I personally at age 70 have never tried any illegal drugs. That is who I am. If it were in fact perscribed it by a doctor I would see if there was another way to administer it (brownies) because I am also a non-smoker. I am glad that you have found something that works for you.
If I need something to calm me on my journey I first turn to music. Sometimes it is lively music to raise my spirits and sometimes it is calm soothing music to center myself in a difficult time. I also use self hypnosis.
I'm sorry that you have been on such a long journey as a care taker.
Good luck with the book. It is important to get all the information out there.
I hope there are still some people reading this. I hope everyone is doing the best they can in their own situation.
Leslie is getting headaches which are probably a side effect of her newest drug. Her Oncologist, who retired yesterday, had her get a brain MRI. This is the first time for that test, so there is no previous baseline to judge it against. Well they found a 5 mm tumor (less than 1/4") and we went to the Radiologist who told us it was a 90% chance it was cancer. We decided to wait and get another MRI in three months to see if there is any growth or shinkage. If there has been an increase in size they will use the "Cyberknife" to attack it. Te Cyberknife is radiation (no surgury) that can be pin pointed at the tumor. So it is a wait and watch situation for now. All the doctors have been doing a great job giving us information and advice all along this journey.
I was very sad for you and Leslie when I read about the latest tests. I can totally understand that you are waiting for the next MRI results before drawing any conclusions, I just feel so bad that you both have to deal with this worrying and stress that it undoubtedly is causing the both of you. Plus the 3 month wait. I am sorry that she has headaches and has to deal with all this constantly. And I feel for you too. It has been a long road that you both have been on, and the road continues to wind and twist. My heart goes out to both of you and you are both in my prayers. I hope that the news is better on the next MRI. How are doing Walt, are you doing OK enough under the circumstances? Are you able to get rid of some of that energy/emotions that you must also be carrying around? Are you both able to talk openly about what is going on? Do you both also talk to other /outside people?
Yes, I am still here, during this past couple of weeks, and the upcoming weeks I will be sporatic. But I will be here and read and respond. I have read your past couple of posts and have not had the time to write the people who arrive and leave and others doing research. I apologize that you have sat with that alone.
Many of Soren's handicap communication with various authorities (the numerous filling out of forms, going places, refilling things and papers out and aquiring lots of other papers and documents to send to other authorities to get some kind of help maybe in the future) has been taking its toll on me. He could do all of this himself if he was not blind, so it is all on me. On top of running to Ikea, to the new apt, to the dump to drop off junk (to not take anything unnecessary to the new apartment), going to get things like a new toilet (which I by the way, dropped and smashed 20 feet from the front door - I was so angry with myself! I had to get it into the car by myself and get it out of the car and onto a trolley, the trolley wheel got stuck by a brick and the trolley tilted - smash!), trips to the hardware store, arranging the moving and GOSH, the list of my complaining can go on forever and ever, I will not bore you with the details, but I realized about 3 weeks ago how much I am dealing with, along with my job and I am beat. I cannot ask him to help me with anything and it has been a struggle like no other. I have every once in a while a fit (in my head) and maybe have a small cry. I feel like such a man, I do not want to be a man and do everything. I feel so un-feminine right now (maybe a weird thing to write to you about), but because I do everything, I feel like I cannot put down the reigns and let someone take over- just for a couple of things, there is no one but me. I drag everything in and out of the apartment, in and out of the car, back and forth bla bla bla. So, time is something I have very little of. Hence, my not being here and not taking better care of myself and being better involved on this website. While writing this I am also feeling pangs of guiltyness after reading your posting, I feel ashamed for complaining. I am not dealing with health issues right now. Soren is doing fine on his dialysis enough and nothing there. His state of chronic heart, kidney and eyesight failure is stabile and just there, no fluctuations at present.
We move in on the 25th and 26th of July. The renovations with the apt are going forward, they are putting up the cabinets in the kitchen, have painted some walls and the bathroom is getting done. So it seems like all systems go there. I hope they will get done before the 21st, so I can move some stuff in myself and get the bed, some drawers and plants in before the movers come. After the 28th of this month, I go back to knowing what my name is and where I am at. Our other apt sold after 3 weeks, so we were lucky and that all worked out.
Walt, I am thinking about you and sending you many prayers, both for you and Leslie. If you write here I will be checking and will get back to you. I promise.
With what you are dealing with, I don't see any of those things as complaints. It is a verbalization of your feeling. It is ashame that the toilet didn't make the trip. I hope as themove gets closer everything will be completed and you will be able to take a breath and relax. Just because you have to take charge of everything shouldn't make you feel like a man. There have been many very strong women through out history that have handled things much like you are doing and I think most men would not handle it as well as you are doing. I picture a young lady peddling her bicycle to work balancing all of these things on her shoulders and doing it with very few bumps in the road.
I'm glad Soren is stable with each one of his problems. I hope you and Soren can be open and discuss all those bumps as they arise. Leslie and I always discuss each detail until we each know how the other one really feels.
Leslie is doing OK. Yesterday she told me that the headaches were getting fewer and fewer and also less intense. So that is a great sign and it has eased both of minds about waiting for another MRI.
You all are going through so much that it makes me sound like a whiner to be on here. I especially feel for all of you who were caregivers at the end of life for your spouses. That breaks my heart. But what a comfort for them to have you all!
My husband was in an automobile accident (100% the other parties' fault) April 29, 2015. The accident left him a parapalegic. He had severe lung injuries as well. We went through 5 weeks of him trying to wean off the trach/ventilator. That time was a living hell. He couldn't tolerate the CPAP setting at all. He was well on his way to the nursing home with the trach if he couldn't get off of it! An angel of a respiratory therapist tried going to the next step after CPAP and that did the trick. Thank the Good Lord Above!
He spent a total of 3 months in the hospital (Trauma ICU two and a half weeks, Long Term Acute Care for 5 weeks and in-patient physical therapy for 6 weeks). We were renting a garden home that was all on one level when he came home from the hospital so I wasn't faced with moving before he came home, however, the bathroom was not handicap accessible.
I took two months of FMLA leave so that we could transition him home and get our "new normal" worked out. I went back to work full time as soon as those two months were up. I saved a month of leave in reserve in case he had unforeseen complications and I needed to be off work some more. My husband was already retired, but I still have a few years left before I am ready to retire.
We hired a caregiver through a private company so that my husband would have someone with him during the day while he was in the bed. As far as I know, there is no such thing as a free caregiver - other than the spouse. At first we had the caregiver all day (9 hours). We did that for 3 months. This was very costly. So we cut back to half days (5 hours) with the caregiver using the hoyer lift to get my husband up and into his wheel chair for lunch and then she left.
3 months after my husband came home from the hospital, we bought a house so we could renovate and make the bathroom accessible. It is heaven for him to get in his shower and be able to brush his teeth at the sink. However, all of the packing and organizing the move and renovation was done mostly by me. Family helped when they could but they all live out of town a couple of hours away.
Once my husband's one year accident anniversary rolled around, we made the decision to try it on our own without the hired caregiver. My husband was used to being up in his chair and could comfortably fix his lunch and putter around the house. I started getting up at 4:30 a.m. and got ready for work, got him dressed and out of bed. We ate breakfast together. I came home at lunchtime to check on him and then went back to work. This meant he was up all day long. My husband enjoyed getting his independence back as much as could. We did that for 1 week before he developed a pressure ulcer that caused him to have to go on bed rest where he has been for two months now. Turns out he never had his wheelchair cushion evaluated - no one told us we needed to do this. As of this past Tuesday, they have tried him on 10 different cushions and have just about found the one that will work on minimizing the pressure when he is in his chair. We have had out of town family taking turns and staying with us a week or two at a time so that I can work. But still my first waking thought is to take care of my husband. I go home at lunchtime to check on him like before and then go back to work. When I get off work and go straight home, I spend an hour or more taking care of my husband. And only then do I get dinner ready, wash clothes, etc. It takes at least 40 minutes getting ready for bed. (How we miss the days when going to bed was simple!)
I have to turn him in the bed, do his leg exercises, etc. I've done this for a year now and while I occasionally have back pain, my hands, wrists and shoulders have started hurting - probably arthritis. I also have a bad case of tendonitis in my ankle and am in a boot. The doctor wants me to start physical therapy like I have time for that in my schedule (yes, I will do as she says). Although it worries me that there will come a time where I'm not physically able to take care of him.
The thing that drives me nuts the most is people telling me to take care of myself. I would like to take a walk when I get home from work, but there just isn't a good time to do that. I can't leave the house with him in the bed. Even when he was up all day, he wanted to get back in the bed as soon as I got home (mostly because of the pressure issue). We do eat like we are supposed to. Sleep is an issue as I have to get up and turn my husband at least once during the night - sometimes it is hard to go back to sleep or it is close to time to get up anyway, so I go ahead and get up. The weekends aren't much better.
I used to be able to go to lunch with a co-worker or my sister-in-law, but now I go home at lunch to check on my husband, so that little bit of freedom has evaporated. I'm hoping that once they have his cushion worked out and his pressure ulcer is on the mend we can both get out and walk around our new neighborhood. Although a little "me" time would be nice. I'm either at work, at the doctor's office with my husband or at home on house arrest (that's what it feels like anyway). I would never say any of that to my husband because I wouldn't want to hurt his feelings. I choose to take care of him and I don't mind that part at all. The bed rest is depressing for both of us because prior to the pressure ulcer, we would go to the movies or to eat out on the weekends.
Hi Denise and welcome to the forum. First let me say that I am sorry for your situation. I hope we can help you in some way along your journey. The pressure sores seem to be the imidiate problem which when solved or lessened will make things easier on all fronts. Are ther options for your husband getting himself into anther chair or into bed such as a hoist? After I read what you wrote, I walked to my bathroom and realized that there would be no way it would be accessible by wheel chair. I am going to figure out what I must do to make that happen if needed. My wife has only needed a wheel chair on occasion but still had some mobility. So thanks for opening my eyes to what might be needed sometime in the future.
How is your husband's general mind set?
Hopefully the "me" time will start to come in the near future. Whether it is with the help of friends and family or just the general situation getting better.
Please don't be sorry for venting. I write things to this forum that I wouldn't mention to friends or family because there is an understanding here of the feelings and frustration you go through being a care giver.
Let us know how things are coming along especially with the pressure sores. I would like to know the options of the cushions.
Hi Walt. Thank you so much for the response and understanding. I am glad I found this group because, like you all say, no one else completely understands 100%.
My husband came home from the hospital a year ago with a stage 2 pressure ulcer. It took a couple of months to heal up. So, from October to April, he did fantastic without any issues. We finally felt like we were getting a little normalcy back. Then he started back with his physical and occupational therapy as an outpatient. He was learning to transfer, but still had a way to go before he got this latest pressure ulcer that is much worse than the one he had a year ago. He has been placed on bed rest - doctor's orders. They only way we have ever been able to get him out of the bed is with a hoyer lift. He still needs to work on his balance and strength to be able to transfer at home (kind of difficult to work on when you are laying in the bed 24/7). So it has been 3 steps forward and 5 steps back.
My husband's general mindset is pretty good considering. He stays very positive most of the time and is looking forward to the future. He was an inspiration to others before this bed rest. Still he has good days and bad just like the rest of us. I think it would depress anyone that couldn't get out of the bed, no matter what was wrong with them. I sometimes have a harder time with depression than he does. I'm trying to work on that.
We go see the wound doctor next week, so hopefully they will put a more agressive dressing on that will enable him to get up a few hours a day.
There are a lot of options for the bathroom. If you have a tub/shower combination, depending on the amount of mobility a person has, you can get a bench that sits half in the tub and half out that a person can sit on and slide over into the tub. Or you can take the tub out and make a walk in shower in that space if the bathroom is configured to where you can get the wheelchair in. If you do a large shower, you can get a shower wheelchair that can get wet. Just make the shower big enough that you can get in with her to turn the chair around and help her with her shower if needed.
Nothing is quick or easy anymore. It takes a good hour to 90 minutes to get a shower, dry off, get back in the bed and get dressed. Then and only then can I get myself cleaned up and ready to go - I'm worn out and sweaty just getting him ready. We always have to start very early if he has a doctor's appointment or anything.
My husband received a foam cushion with his power chair and used it from Sept. until April. We found out that we should've had a cushion evaluation, but no one ever told us. He has since tried a cushion that has chanels in it that they can remove air pods in some places and put extra pods in other chanels. That one didn't do good because it caused him to slide down some so that it made matters worse. Then he tried a cushion with air chambers. We pumped it up and then it had a valve that would redistribute the air from the parts he was sitting on to the parts of the cushion that didn't have any pressure. That one worked pretty good. However they had the best results in their pressure mapping with a cushion that has a hole cut out of it inside the cover so that he is suspended by his thighs and cheeks and no boney parts have contact with the cushion and therefore have no pressure on them. That one is the most promising so far. We will keep our fingers crossed. Once they say that is the winning cushion, the wound care doctor will give her blessing for him to get up more.
I hope you and your wife are having good days and can get out and enjoy life!
That was good information about the bathroom set ups and also the cushion information. Opening people's eyes to problems like the cushion is very helpful. If you have never been in those situations you don't realize that they can be so much of a major problem in the healing process.
As for my bathroom after reading what you had to say I think I could remve my existing vanity and replace it with a small one then make a couple of small modifications to the tub. Thanks for getting me thinking about what might be neccessary in the future.
I'm glad your husband mindset is on the positive side. It is so helpful to both the patient and the care giver. Leslie has been very positive and willing to fight to stay healthy. She exercises twice a day and I am so proud of her. We went out for a nice dinner Friday with her nephew and his wife to a new place on the water. Very relaxing.
Friday morning, I was really looking forward to the weekend. Dan and I were going to have the house to ourselves for the first time in several weeks. Don't get me wrong, I am forever grateful to our family members who have taken turns staying with Dan so I can go to work while he was on bed rest. But it was going to be nice to have our house back if only for the weekend.
Dan has been running a fever and getting the chills for the past week or so. I called the doctor's office last week about this and she said we could wait until his appointment on the 18th. Well, when the home health nurse came to check on Dan Friday, Dan's blood pressure was extremely low (74/30). So, off to the ER we go. They admitted him Friday evening. I will spare you the details, but it was all related to his pressure ulcer. He had one surgery Saturday and another one on Sunday. He may have to have another today, but that's ok because we want this thing healed up - whatever it takes. In instances like this it is actually a blessing that he doesn't have any feeling below the rib cage. He will have to have reconstructive surgery at some point.
Hopefully he will be able to go home in a few days.
Walt,
So glad you and Leslie got to get out and have a good time with your nephew. That is wonderful! I know that lifted everyone's spirits.
I'm sorry that your plans for the weekend had to change so much. Hopefully this will speed up Dan's recovery of the pressure ulcer. Maybe this will give you a couple of minutes to yourself since you know he is being well cared for.
Thanks for the update.
I lost a friend to brain cancer this weekend, but he put up a good fight did better than all the doctors expected and went peacefully.
My prayers are with everyone on the forum and all of the police officers that defend our safety.
I am very sorry for your loss. I know you will miss him.
Yes, Dan and I are both glad he went to the hospital. We are confident that this will speed up the healing process. Hopefully this will mean he can get back to his life a little sooner.
I have had some time to myself to do some things around the house and it has been nice being able to go to bed when I want to and not around a schedule. I feel guilty for even saying that out loud. I love Dan very much and would do anything in the world he needs to help him heal. I work a full time job outside the home and it is sometimes overwhelming.
I too pray daily for our country and the people who put their lives on the line to keep us safe. We need a resolution to all of this turmoil and strife.
When you have the time for yourself please don't feel guilty about doing things for yourself even if it is as simple as going to bed when you want to. It is important to take those little breaks when you can to recharge your batteries even to make you feel good about yourself.
I've eaten a lot of peanut butter and jelly sandwiches or grabbed a couple of cookies because I wasn't taking the time for myself. After things got into a calmer routine of medications, test of all kinds and doctor visits, I started taking care of myself a little better and I think that helped the overall situation.
So, please don't feel guilty. It sounds like you are doing a great job of being a care given. My hat is off to you.
Hello, I thought I might be able to cope better, if I spoke to some peers about my caregiving life. My name is Andrea. My Husband, Joseph and I have been married for 46 years. We were "Childhood Sweethearts". It has not entirely been a bed of roses, but we have gone through our ups and downs, and come out stronger than ever each time. Then in 2013 he was diagnosed with Esophagus cancer. He went through the chemo, and radiation, and came out cancer free. After recovery, he had his right knee replaced, having had his left one replaced before the cancer. He struggled with the physical therapy, but completed it, and things had sort of gotten back to normal, when he had a bad fall, and broke his femur in the same right leg. Upon being treated in the ER, they found his white blood count was high, so did an X-ray, and discovered he had Lung cancer. He was not a candidate for surgery, because of the location of the mass, nor did the oncologist choose to give him chemo this time, due to his debilitated physical condition. He had to have his femur repaired before he could have radiation. After surgery he had to go to a nursing home for PT. Then he had six weeks of daily radiation, which he completed in April of this year. He was still recovering from the effects of the radiation, and his broken femur, when he fell two weekends in a row. The second time he fell, he broke his hip. The Right one, of course! He was in the Nursing Home for PT for his hip, but this time insurance quit paying, saying he was not cooperating with the PT, and not making progress! So I had to private pay the nursing home while I try and sort out what I am going to do. I mean, I really am fed up with the whole Health Care System. Joseph has been through so much, and he always was a hard worker, and a good provider. I am frustrated because I can't get him the help he needs. He isn't even getting PT right now, he wants to come home, but I am so afraid he will fall again! Home Health is the only option I have right now, and cheaper than the nursing home, for sure. Oh, and did I tell you that I am working a full time job, balancing running back and forth to Dr.s and visiting with him at the nursing home as much as I can. He is depressed. I am depressed. I am not feeling good about him coming back home and I feel guilty for feeling that way. Oh my goodness...
As you can see frustration is one of the major problems a care giver faces. Would there be any assistance from friends or family if you brought him home? People who could help during the day while you are at work. That might ease the situation until something permanent could be worked out. Can he (and will he) do some or all of the physical traing on his own? I bring up these questions hopefully to let you think about different avenues to take on this journey. The advantage of having Joseph home would be that you don't have to travel to the nursing home. I hope he is healing as well as can be expect in the situation. Have the doctors given any reason for the falls?
I see you are a cat lady (I have three), I hope they bring some calm to you.
I saw this yesterday and I think you'll all agree that truer words have never been written:
"You never know how Strong you are....Until being strong is the Only choice you have". Author Unknown
I am not a nurse, but I play one at home. I can add wound care to my growing skills list. My husband has been on bed rest for 3 months trying to keep his current health issue from getting worse. It didn't work. After a week in the hospital and 3 surgeries, my husband has been back home for 4 weeks. He will be on bed rest for 3 -4 months while his wounds heal. I've been stressed out about work and about who is going to stay with him while I am at work, but have come up with a short term solution. My nephew is attending college in our city. He was looking for a place to live for the semester. Long story short, he moved in with us. He will be with my husband in the mornings and I can work from home in the afternoons while he goes to class. It saves my nephew from having to pay rent and it keeps me from having to pay for a caregiver (soooo very pricey - who can afford it??). A win-win!!
Now my mom's doctor is asking her to have multiple scans of her pancreas. She has been cancer free for 13 years now. I certainly hope and pray this is nothing serious. I will truly have a come apart if we get bad news. Please pray for her.
I have a seminar to go to Saturday - maybe there's one in your town too! It's AARP's A Time Out for Family Caregiving. It's a 90 minute caregiver meeting where we will learn more about how to build a caregiver support network, tips to care for yourself for a loved one, and where to find helpful resources. It's free. I am really looking forward to it. http://aarptek.aarp.org/caregiving/
I hope you all have a great weekend! Try to take a few minutes for yourself if there's any way possible.
So my fiancée was diagnosed in 2011 and we have a 2 year old son and I'm just stress to the max and also am dealing with anxiety and feel like no one understands my stress! I hope to find some people going through the samething in this grouo
My name is Ashton and I am 23 and a caregiver to my fiance who is 26 and a parapalegic. In May 2015 he was in an ATV accident which sliced his spinal cord and left him paralyzed. At the time we had only been dating a little over a year and then that happened. My only choice was to take care of him. At the time of the accident I was already working 2 jobs but I couldn't qualify for FMLA since we weren't married, so I used personal and vacation time. After a year of taking care of him by myself (since only one or two of his family members would help me) I ended up missing too much work which resulted in me losing my main job. Our state has the waiver program so I can get paid to be his caregiver, we just can't get married or else I lose that also.
I find myself becoming more frustrated and depressed as time goes on with everything. Everyday there is a million and one things to be done and it seems like only 2 of them actally end up getting done. In the end, I feel more like a caregiver to him and less like as a fiance. I just don't know what to do anymore, I am scared with how young with both are.
In may of last year (2016) my fiance was in a car accident and suffered a severe traumatic brain injury. He spent a month in the ICU and another month in a rehab facility. I was by his side almost the entire time. I think I spent a total of four nights at home and not in the hospital with him. He is home now and doing well, but he can't work and his memory is terrible. He is finished with physical, occupational, and speech therapy. He's started going to the gym, but it's very difficult some days to get him to do much of anything. He also has trouble controlling his emotions, and some days gets angry very easily and yells at me about silly things, like what we are having for dinner. While he was in rehab I found out that he had cheated on me, but I also understood that the guy in the hospital bed was not neccesarily the same guy who had done that to me, and so I stayed, opting to talk with him about it when he was far enough along in his recovery that we could have that discussion and decide what to do from there. Fast forward, and I'm still here. He hates that he did that. He can't remember specifics, but he has gone back through emails and text messages and told me everything that he knows that happened. I have forgiven him. He is a different person now than he was before, in ways both good and bad. I won't hold old him's actions against new him, if that makes sense. It was still a really hard thing to deal with, but it isn't something that causes me much stress at this point, surprisingly enough.
We don't have much money (I work part time) and we are still waiting on approval from SSI. Our family of three has been living solely on my part time income for ten months now.
His son has also had some behavioral problems since he's come home. He threatened to hurt himself the day after Christmas and was admitted to a psychiatric hospital for two weeks. Things have been better since he has been home, with a few incidents here and there, mostly when he is at his bio mom's.
All of this to say...I'm really struggling. When he gets upset and yells and throws his food in the floor because he can't remember telling me he wanted a bologna sandwich, I want to yell and scream and just leave. Five minutes later he won't remember why he was upset, and tries to tell me that he threw his food as a joke, that he wouldn't ever be that upset about something so silly...but I don't forget. I know that it is his brain injury talking and not necesarily him, but that doesn't make the things he says and does hurt any less. I'm tired of being broke. I'm tired of taking care of my fiance and our kid and not taking care of myself. They have been my priority, and rightfully so, but it's to the point that my mental health is suffering. I am writing grants and doing everything I can to try and bump my postition up to full time so I can get health benefits, but that means more job related stress on top of all of my normal life related stress. I just don't know what to do or where to turn for help. I can't afford a therapist. I can't afford to not work, but I also can't really afford to be away from the house much more than I already am. I'm not super comfortable leaving my fiance and his son alone together. His son is not very understanding of his dad's injury and is sometimes just mean to him. He tells me all the time that he's annoyed by his dad now, and it makes his dad feel awful. They bring out the worst in each other anymore.
I have been a care giver to my wife for nearly 4 years now, with each passing year getting harder to deal with. My wife has a long list of spinal issues most of which I can't spell correctly, from scoliosis to degenerative disc disease. She just had surgery in early March to relieve the crushing of her nerves in her cervical spine, fusion, disc replacement, bone graph and so on. As her condition worsens I am left to do everything, and I mean everything and I work a full time job as well. I 58 and I can't keep this pace up much longer, no family to help, all of our friends are no longer our friends. It is just the 2 of us and the cat and he's no help. I had pneumonia twice and still had to be the care giver and work. My wife does not have time to talk to me, she sleep most of the time but she complains I didn't spend enough time with her. What the hell!!! I only sleep 3 to 5 hours a night, and 5 hours of sleep is a good night.A home of any kind is out of the question, I've seen those places, even the "good ones" private pay and all, they suck. You have no idea of how many times I just wanted to end it, but I can't because I know that my wife would suffer a horrible end. I feel trapped, used, and unliked, forget love, that ship sailed long ago. Missouri suck as most states do when it comes to caregiver support. I just want my best friend back, this has put such a strain on our over 30 year marriage.
Hi, I kind of got out of the loop and forgot about this forem until I just got an email from them. It's been one hell of a ride the past few years. My husband pulled out from his multiple organ failure (from gallstones.. though his gallbladder had been removed back in 2009), his kidneys kicked back in, and he was pretty much back to normal.. even went back to work. It had been a long three months, but after had seemed like it never even happened.
I'm not complaining, because everyone (the doctors, and his 3 daughters) wanted me to let him go. I didn't feel it, and though I felt like the enemy I'm glad I didn't buckle into what they wanted. We were able to have another 1 1/2 years of him, and they were good ones. Ones that he kept working, and we did many things (concerts, plays, movies, outings, etc). He took me to Charleston last November for my birthday, and we had a lovely time walking around all lovely museums.. taking horse carriage rides.
Unfortunately, in the end his cancer spread as the Opdivo infusions did not work for him. He worked until the week before his death (loved his job), and even took calls when he was in the hospital. He was hospitalized for almost a week, and came home with hospice to die. He passed 2 days later, the end of January. I would not suggest inhome hospice for most. It was very hard on him and us. I had to administer morphine with other medications (and I'm no nurse). I got no sleep, and it was just very stressful let alone the stress from him slowly slipping away. I should mention there were 5 family members in the house, and even with all them it was a very difficult 2 days.
On his death bed he told his girls to take care of Karen and send her birthday cards. So sweet, but unfortunately one took it as now knowing where the hierarchy laid. It's been an emotional roller coaster for me. They all went home to their normal lives (their husbands, children, jobs, and regular routines), while mine is turned upside down and I'm trying to figure out it all. They can laugh, but I'm still crying daily. I thought we were close, but love quickly is forgotten when others feel it's all about them. It has become a me, me world. I don't get asked much how I'm doing, and there are seldom any calls.
It's now all come down to money, and them being unsatisfied with what's been left to them (apparently they feel entitled to more). They emailed our attorney for copies of our trust. I just get a sick feeling that they are going to drag this out, and all that will be gained are more attorney fees for me. Very sad!
My poor husband would be rolling over in his grave. I'm sure he never expected this from them. Especially after all I had done. I ended up with osteoarthritis in my knees, lower spine, left hip, rib cage and right arm from carrying the wheelchair (1 1/2 years ago) when he had to use one. It was only for a month I had to do it (he quickly moved to a walker, cane, and then nothing), so I warn all to be careful with any lifting. Meanwhile I'm stressed out from all this, and hoping it gets cleared up. I have enough to deal with, and the negativity just adds to it.
Hoping everyone else is keeping strong, so they can pull through these difficult times. If you have family and friends nearby to lean-on you should do so. We unfortunately live out of state from our family and friends... which makes it harder on me now.
After you've been together 24/7, and your spouse passes.. you find it is very quiet, and all that you did is now not needed. You have to find a new you. Difficult, especially if you feel you don't have the support needed and what you thought was your loving extending family aren't there as you would have thought they would be. Death can make people ugly, and stray away from what really is important.
I'm going to start off by saying I love my wife dearly. We have been married 21 years, and the only reason why I have been doing this is because I do love her. Lately though, these feelings have been faltering. For the last decade her health has been on a slow, and steady decline due to complications of diabetes. About 5 years ago she became mostly wheelchair bound (she was able to get herself out of bed, and onto the toilet, but that was about it) and increasingly bitter towards me. I fell into a daily routine of get up, go to work, come home, cook dinner, clean up, go to bed, rinse and repeat. That in itself didn't bother me, but the constant "you're doing it wrong" or "get off your ass, and get *chore* done" got to me, especially right after a long day at work. After awhile, I didn't feel much like a husband, more like personal housekeeper, and babysitter to our son. I just kept at it though, because I know most of the attitude was from frustration of what her body was doing.
2 years ago, her health plummeted quickly. Things happened so fast, that we didn't really have time to discuss what we were going to do. After a series of horrible, snap decisions, we are in a situation that I was hoping to never be in again. Because I didn't have time to research anything, we have been living with my father, in an area that doesn't have that great of financial stability. Healthcare is a joke, and public housing is out at least another year, or more. The state won't allow me to get paid for taking care of her, and she has some major trust issues with "medical professionals" (it happens when they drop you, or leave you for hours on end when you ask to go to the bathroom). In short, we're still here, and being my dads house, everything is still "his rules".
Since all this has started 2 years ago, we have argued more than the last 20 years combined. I have been at her beck and call, and she really doesn't like me being away for too long (she feels couped up also, and I understand that). So I don't really get much "me time" because I end up having to deal with meltdowns of epic proportions when I get back. I have also been dealing with adult diapers longer than I dealt with our sons baby diapers. Since she has severe IBSD, I have seen some horrific messes, at the worst possible times, and I really don't know if I can handle that much more. Lately, also, our arguments have usually ended with her threatening to kill herself in one way or another, and what worries me, is it's not effecting me emotionally anymore. I don't know if it's because I have heard it so many times now I'm not fazed, or I just don't care what happens.
I'm increasingly more and more frustrated, and resentful of the situation. Her health, and general mood has made her, and everyone around her increasingly more miserable. Our son is 11, and has missed out on so much, because we can't be away for more than a couple hours at a time.
It's because of all this (and more that I haven't gotten into). I really don't know if I can deal with this situation anymore. I have been afraid to ask for a divorce, because I don't really want to look like the world's biggest douche, and for the sake of our son. I know I'm going to need a shrink after all this is done. She has already stated that if we do end in divorce, she will insist on going to a care facility, and passing away there.
When is it time to be able to say "I'm done"?
seems like some people wait for an answer. Others wait for a sign to decide when done is done. She feels lousy about it as well. do you think she enjoys your child missing out on things that a child his age should be doing? Would telling her what she feels already about you wanting to leave an issue of anger or resentment? she doesn't like it just as much as you do but you can't hang on to hoping for change if you don't initiate it.
Karen I'm so sorry for your loss. There just are not words to describe the depth of pain and emptiness at the loss of a spouse. I hear that people forget after a few months and think your life just goes on and everything is fine. It's not. The first birthday, the first holiday they may think about. The first time you go back to a store and see something they would have liked or would have looked good on them, hearing a song they liked, opening a drawer and finding something with their handwriting, or an old phone with a recording of their voice the friends/family are not there nor would they be able to comprehend. You never know when you wil come across a trigger to a wave of grief. I'm sorry to hear your family is far away and unable to support you through some of those times. I cry every day but it is longer between the deep waves of grief so I guess one could say I'm improving. I'm at least functional now. I wasn't functional the first few months. I was in a fog just trying to go through the motions.
RenoViking caregiving is exhausting. Being your wife's advocate and taking care of her is admirable. You're right about the care facilities. I have issue with a lot of medical "professionals" as well. I toured many of the the facilities and I didn't like a single one. When you do the math of how long it takes to do the tasks for each patient vs how many staff is on duty to perform them it doesn't take long to figure out your loved one will be waiting extended periods to have their need met. The food was aweful.They were also not able to accommodate special diets is heart healthy, diabetic, renal, etc. It's terrible that our insurance and medicade will pay the cost of that but not for aid in the home to support familiys which is not only alot less expensive but where most people want to be. My husband preferred I do many of the tasks for him. He did not want others touching him. They did not care for him he felt safer with me doing it. One thing I read was about some situations from the perspective of the patient. It helped so I'll share. From their perspective they have lost all control. That is very frustrating for my husband. They are grieving the loss of all they used to be able to do, their hopes, dreams, and freedoms. They want a day off but that's not possible. They lash out.It's all they can do.I changed by asking questions and giving him as many choices as possible from eating, what to wear, what time he would like me to do xyz. It's difficult, , takes a lot of patience sometimes it may not make sense but it made him feel better to have some say in his care and how things were done. Compliments can go a long way. It sounds as if you are caught between your dads rules, you wife's needs, your son's needs, as well as your own. I hope you can find a better balance so that you may continue to enjoy and benefit from the love you share. That love is a precious gift that many never find.
My name is Kim. I posted here for a while beginning at the end of 2015. I stopped posting when I got locked out of my account. I got an email and thought I'd check in. Things were pretty rough caring for my husband but I would do it all over again. We were together for 32 years and almost made it to our 30th wedding anniversary. I can look in the mirror and know I did my very best for him, I know that he knew that as well. Even during the most difficult times we managed to find bright spots of hope and love. I struggle daily. I walked alone. I don't like being alone. I drove home from the hospital 116 miles alone. I was at my husbands funeral service alone. None of his children came. I had a few people I had just met at church and a few members of a volunteer group I joined stand with me. These people did not know us. In fact all but one had never even met him. These people had only just met me yet they were there. I prayed for God to put people in my path to help me and he did. He continues to do so. It's been 16 months. For some reason God chose to keep me here. I go to sleep hoping I won't wake up. Then I do. God must have some plan for me or work he wants me to do so I get busy doing it in hopes my chores will soon be through and I can be with him again. I volunteer in 2 organizations outside of church, and I am now involved in multiple ministries through the church. One of which is Eucharistic Minister to the Sick and Homebound. When does care giving end? Never for me. It's what I'm called to do. I don't want anyone to suffer alone as I do. I saw people left alone for months with no visitors in hospitals, LTC etc. The nurses tell me it's more common to have patients that are left alone. It's uncommon for American families to be activly involved.
I had minor health issues ie broke a tooth and had to had a procedure done. Not a big deal for most people but they knew it was too much for me. I had to be sedated a few times. Scary. Who do I ask to drive me? Who do I trust to take care of me while under the effects of the sedative. I put off getting the dental work done for months. I lived with severe abdominal pain for months. My husband is not here. There is no one else I trust. I struggle with a lot of things. There is a conference in the spring called Joyful again. My husband wouldn't want me to be this unhappy so I'm going to try and attend.
I've been married to my husband for 21 years, and within the last 10 years he was diagnosed with Parkinsons, mild Alzheimers, dementia, bipolar and was born with ADHD. His combination of issues has been complex. A marriage therapist about 5 years ago made note that he is a people please, which put into perspective the fact that I am not "first" in his life. Given that understanding, I have not failed to be the best wife an caregiver I can as he has become less able to navigate his life. I am now in the position of handling all aspects of his needs such as sorting and dispensing meds, scheduling, transporting (he can no longer drive), and getting him to doctors, dentists, and anywhere else he needs to go. I cook for him, clean for him, and in all love him dearly. I also handle all financial aspects, which is difficult for him because money is his God. We are in second marriages so our marriage was based on separate financial standing. He earned his living....I earned mine....and to this day I don't comingle funds. We split the household bills. Recently he dropped the bomb on me that he wants a divorce. He wants me to sign over the Powers of Attorney (Financial and Health) to his son, and sell our home. I'm overwhelmed and emotionally devastated.
I live with Chronic Illness daily and would like to know who is available to offer emotional and community Service Support in the EL Cajon California area. My Email address: Jonesc748@Gmail.com
I feel depressed and really need to make a human connection.
Paul and I have been married 34 years. He's 84 and I'm 64. Doing well until the last few years. He has stage 4 kidney disease (it's under control), atrial fibrillation and congestive heart failure. He drinks beer every day - averaging about 8 per day, and now he's smoking cigars. His memory is shot. He hasn't showered in over 5 months - says his hormones are dried up, he doesn't have to shower, laughs and says he's a dirty old man. Two years ago, he stopped doing anything around the house. I have to take care of maintence, bills, cleaning, in addition to making his dr. appointments, ordering his prescriptions, and taking him to doctor appointments. Heard him on the phone yesterday telling his sister that he lives a carefree life and doesn't have to worry about anything. I told him I'm tired and he says "I know, I'm sorry". I have so much resentment built up that I don't even want to be around him anymore. His case manager says I need counseling but my insurance won't pay for it and I'm already spending a fortune on health insurance. He has no family here to help. My stepdaughter lives about a 5 hr. drive from here. She visits a few times a year and if I try to tell her anything about the situation she just says she's sorry. I'm sorry for venting. Thanks for reading.
Paul and I have been married 34 years. He's 84 and I'm 64. Doing well until the last few years. He has stage 4 kidney disease (it's under control), atrial fibrillation and congestive heart failure. He drinks beer every day - averaging about 8 per day, and now he's smoking cigars. His memory is shot. He hasn't showered in over 5 months - says his hormones are dried up, he doesn't have to shower, laughs and says he's a dirty old man. Two years ago, he stopped doing anything around the house. I have to take care of maintence, bills, cleaning, in addition to making his dr. appointments, ordering his prescriptions, and taking him to doctor appointments. Heard him on the phone yesterday telling his sister that he lives a carefree life and doesn't have to worry about anything. I told him I'm tired and he says "I know, I'm sorry". I have so much resentment built up that I don't even want to be around him anymore. His case manager says I need counseling but my insurance won't pay for it and I'm already spending a fortune on health insurance. He has no family here to help. My stepdaughter lives about a 5 hr. drive from here. She visits a few times a year and if I try to tell her anything about the situation she just says she's sorry. I'm sorry for venting. Thanks for reading.
Thank you for reaching out and sharing a little bit about your caregiving situation. I am sorry I am just getting to a reply.
I don't know if you're still looking for resources but the Caregiver Help Desk might be of help to you. They provide one-on-one support by listening and pointing you in the direction of resources and supports that you'd find beneficial. You can reach out by phone by calling 855-227-3640. If you'd rather chat, you can click the orange "Help Desk" button on the bottom right of your screen. You can talk with someone at the Help Desk live from 8AM to 7PM Eastern, Monday through Friday but you have the option to leave a message if you reach out outside of those hours.
Please let me know if I can be of any additional assistance or if you have any additional needs/qiuestions.
Hi Tom
Welcome aboard.
I personally at age 70 have never tried any illegal drugs. That is who I am. If it were in fact perscribed it by a doctor I would see if there was another way to administer it (brownies) because I am also a non-smoker. I am glad that you have found something that works for you.
If I need something to calm me on my journey I first turn to music. Sometimes it is lively music to raise my spirits and sometimes it is calm soothing music to center myself in a difficult time. I also use self hypnosis.
I'm sorry that you have been on such a long journey as a care taker.
Good luck with the book. It is important to get all the information out there.
Walt
I hope there are still some people reading this. I hope everyone is doing the best they can in their own situation.
Leslie is getting headaches which are probably a side effect of her newest drug. Her Oncologist, who retired yesterday, had her get a brain MRI. This is the first time for that test, so there is no previous baseline to judge it against. Well they found a 5 mm tumor (less than 1/4") and we went to the Radiologist who told us it was a 90% chance it was cancer. We decided to wait and get another MRI in three months to see if there is any growth or shinkage. If there has been an increase in size they will use the "Cyberknife" to attack it. Te Cyberknife is radiation (no surgury) that can be pin pointed at the tumor. So it is a wait and watch situation for now. All the doctors have been doing a great job giving us information and advice all along this journey.
My thoughts are with all of you.
Walt
Hello Walt
I was very sad for you and Leslie when I read about the latest tests. I can totally understand that you are waiting for the next MRI results before drawing any conclusions, I just feel so bad that you both have to deal with this worrying and stress that it undoubtedly is causing the both of you. Plus the 3 month wait. I am sorry that she has headaches and has to deal with all this constantly. And I feel for you too. It has been a long road that you both have been on, and the road continues to wind and twist. My heart goes out to both of you and you are both in my prayers. I hope that the news is better on the next MRI. How are doing Walt, are you doing OK enough under the circumstances? Are you able to get rid of some of that energy/emotions that you must also be carrying around? Are you both able to talk openly about what is going on? Do you both also talk to other /outside people?
Yes, I am still here, during this past couple of weeks, and the upcoming weeks I will be sporatic. But I will be here and read and respond. I have read your past couple of posts and have not had the time to write the people who arrive and leave and others doing research. I apologize that you have sat with that alone.
Many of Soren's handicap communication with various authorities (the numerous filling out of forms, going places, refilling things and papers out and aquiring lots of other papers and documents to send to other authorities to get some kind of help maybe in the future) has been taking its toll on me. He could do all of this himself if he was not blind, so it is all on me. On top of running to Ikea, to the new apt, to the dump to drop off junk (to not take anything unnecessary to the new apartment), going to get things like a new toilet (which I by the way, dropped and smashed 20 feet from the front door - I was so angry with myself! I had to get it into the car by myself and get it out of the car and onto a trolley, the trolley wheel got stuck by a brick and the trolley tilted - smash!), trips to the hardware store, arranging the moving and GOSH, the list of my complaining can go on forever and ever, I will not bore you with the details, but I realized about 3 weeks ago how much I am dealing with, along with my job and I am beat. I cannot ask him to help me with anything and it has been a struggle like no other. I have every once in a while a fit (in my head) and maybe have a small cry. I feel like such a man, I do not want to be a man and do everything. I feel so un-feminine right now (maybe a weird thing to write to you about), but because I do everything, I feel like I cannot put down the reigns and let someone take over- just for a couple of things, there is no one but me. I drag everything in and out of the apartment, in and out of the car, back and forth bla bla bla. So, time is something I have very little of. Hence, my not being here and not taking better care of myself and being better involved on this website. While writing this I am also feeling pangs of guiltyness after reading your posting, I feel ashamed for complaining. I am not dealing with health issues right now. Soren is doing fine on his dialysis enough and nothing there. His state of chronic heart, kidney and eyesight failure is stabile and just there, no fluctuations at present.
We move in on the 25th and 26th of July. The renovations with the apt are going forward, they are putting up the cabinets in the kitchen, have painted some walls and the bathroom is getting done. So it seems like all systems go there. I hope they will get done before the 21st, so I can move some stuff in myself and get the bed, some drawers and plants in before the movers come. After the 28th of this month, I go back to knowing what my name is and where I am at. Our other apt sold after 3 weeks, so we were lucky and that all worked out.
Walt, I am thinking about you and sending you many prayers, both for you and Leslie. If you write here I will be checking and will get back to you. I promise.
Take care of yourself as well.
Best wishes
Michelle
Hi Michelle,
With what you are dealing with, I don't see any of those things as complaints. It is a verbalization of your feeling. It is ashame that the toilet didn't make the trip. I hope as themove gets closer everything will be completed and you will be able to take a breath and relax. Just because you have to take charge of everything shouldn't make you feel like a man. There have been many very strong women through out history that have handled things much like you are doing and I think most men would not handle it as well as you are doing. I picture a young lady peddling her bicycle to work balancing all of these things on her shoulders and doing it with very few bumps in the road.
I'm glad Soren is stable with each one of his problems. I hope you and Soren can be open and discuss all those bumps as they arise. Leslie and I always discuss each detail until we each know how the other one really feels.
Leslie is doing OK. Yesterday she told me that the headaches were getting fewer and fewer and also less intense. So that is a great sign and it has eased both of minds about waiting for another MRI.
My thoughts are with you.
Walt
You all are going through so much that it makes me sound like a whiner to be on here. I especially feel for all of you who were caregivers at the end of life for your spouses. That breaks my heart. But what a comfort for them to have you all!
My husband was in an automobile accident (100% the other parties' fault) April 29, 2015. The accident left him a parapalegic. He had severe lung injuries as well. We went through 5 weeks of him trying to wean off the trach/ventilator. That time was a living hell. He couldn't tolerate the CPAP setting at all. He was well on his way to the nursing home with the trach if he couldn't get off of it! An angel of a respiratory therapist tried going to the next step after CPAP and that did the trick. Thank the Good Lord Above!
He spent a total of 3 months in the hospital (Trauma ICU two and a half weeks, Long Term Acute Care for 5 weeks and in-patient physical therapy for 6 weeks). We were renting a garden home that was all on one level when he came home from the hospital so I wasn't faced with moving before he came home, however, the bathroom was not handicap accessible.
I took two months of FMLA leave so that we could transition him home and get our "new normal" worked out. I went back to work full time as soon as those two months were up. I saved a month of leave in reserve in case he had unforeseen complications and I needed to be off work some more. My husband was already retired, but I still have a few years left before I am ready to retire.
We hired a caregiver through a private company so that my husband would have someone with him during the day while he was in the bed. As far as I know, there is no such thing as a free caregiver - other than the spouse. At first we had the caregiver all day (9 hours). We did that for 3 months. This was very costly. So we cut back to half days (5 hours) with the caregiver using the hoyer lift to get my husband up and into his wheel chair for lunch and then she left.
3 months after my husband came home from the hospital, we bought a house so we could renovate and make the bathroom accessible. It is heaven for him to get in his shower and be able to brush his teeth at the sink. However, all of the packing and organizing the move and renovation was done mostly by me. Family helped when they could but they all live out of town a couple of hours away.
Once my husband's one year accident anniversary rolled around, we made the decision to try it on our own without the hired caregiver. My husband was used to being up in his chair and could comfortably fix his lunch and putter around the house. I started getting up at 4:30 a.m. and got ready for work, got him dressed and out of bed. We ate breakfast together. I came home at lunchtime to check on him and then went back to work. This meant he was up all day long. My husband enjoyed getting his independence back as much as could. We did that for 1 week before he developed a pressure ulcer that caused him to have to go on bed rest where he has been for two months now. Turns out he never had his wheelchair cushion evaluated - no one told us we needed to do this. As of this past Tuesday, they have tried him on 10 different cushions and have just about found the one that will work on minimizing the pressure when he is in his chair. We have had out of town family taking turns and staying with us a week or two at a time so that I can work. But still my first waking thought is to take care of my husband. I go home at lunchtime to check on him like before and then go back to work. When I get off work and go straight home, I spend an hour or more taking care of my husband. And only then do I get dinner ready, wash clothes, etc. It takes at least 40 minutes getting ready for bed. (How we miss the days when going to bed was simple!)
I have to turn him in the bed, do his leg exercises, etc. I've done this for a year now and while I occasionally have back pain, my hands, wrists and shoulders have started hurting - probably arthritis. I also have a bad case of tendonitis in my ankle and am in a boot. The doctor wants me to start physical therapy like I have time for that in my schedule (yes, I will do as she says). Although it worries me that there will come a time where I'm not physically able to take care of him.
The thing that drives me nuts the most is people telling me to take care of myself. I would like to take a walk when I get home from work, but there just isn't a good time to do that. I can't leave the house with him in the bed. Even when he was up all day, he wanted to get back in the bed as soon as I got home (mostly because of the pressure issue). We do eat like we are supposed to. Sleep is an issue as I have to get up and turn my husband at least once during the night - sometimes it is hard to go back to sleep or it is close to time to get up anyway, so I go ahead and get up. The weekends aren't much better.
I used to be able to go to lunch with a co-worker or my sister-in-law, but now I go home at lunch to check on my husband, so that little bit of freedom has evaporated. I'm hoping that once they have his cushion worked out and his pressure ulcer is on the mend we can both get out and walk around our new neighborhood. Although a little "me" time would be nice. I'm either at work, at the doctor's office with my husband or at home on house arrest (that's what it feels like anyway). I would never say any of that to my husband because I wouldn't want to hurt his feelings. I choose to take care of him and I don't mind that part at all. The bed rest is depressing for both of us because prior to the pressure ulcer, we would go to the movies or to eat out on the weekends.
Thanks for letting me vent! Sorry so long!
Hi Denise and welcome to the forum. First let me say that I am sorry for your situation. I hope we can help you in some way along your journey. The pressure sores seem to be the imidiate problem which when solved or lessened will make things easier on all fronts. Are ther options for your husband getting himself into anther chair or into bed such as a hoist? After I read what you wrote, I walked to my bathroom and realized that there would be no way it would be accessible by wheel chair. I am going to figure out what I must do to make that happen if needed. My wife has only needed a wheel chair on occasion but still had some mobility. So thanks for opening my eyes to what might be needed sometime in the future.
How is your husband's general mind set?
Hopefully the "me" time will start to come in the near future. Whether it is with the help of friends and family or just the general situation getting better.
Please don't be sorry for venting. I write things to this forum that I wouldn't mention to friends or family because there is an understanding here of the feelings and frustration you go through being a care giver.
Let us know how things are coming along especially with the pressure sores. I would like to know the options of the cushions.
Walt
Hi Walt. Thank you so much for the response and understanding. I am glad I found this group because, like you all say, no one else completely understands 100%.
My husband came home from the hospital a year ago with a stage 2 pressure ulcer. It took a couple of months to heal up. So, from October to April, he did fantastic without any issues. We finally felt like we were getting a little normalcy back. Then he started back with his physical and occupational therapy as an outpatient. He was learning to transfer, but still had a way to go before he got this latest pressure ulcer that is much worse than the one he had a year ago. He has been placed on bed rest - doctor's orders. They only way we have ever been able to get him out of the bed is with a hoyer lift. He still needs to work on his balance and strength to be able to transfer at home (kind of difficult to work on when you are laying in the bed 24/7). So it has been 3 steps forward and 5 steps back.
My husband's general mindset is pretty good considering. He stays very positive most of the time and is looking forward to the future. He was an inspiration to others before this bed rest. Still he has good days and bad just like the rest of us. I think it would depress anyone that couldn't get out of the bed, no matter what was wrong with them. I sometimes have a harder time with depression than he does. I'm trying to work on that.
We go see the wound doctor next week, so hopefully they will put a more agressive dressing on that will enable him to get up a few hours a day.
There are a lot of options for the bathroom. If you have a tub/shower combination, depending on the amount of mobility a person has, you can get a bench that sits half in the tub and half out that a person can sit on and slide over into the tub. Or you can take the tub out and make a walk in shower in that space if the bathroom is configured to where you can get the wheelchair in. If you do a large shower, you can get a shower wheelchair that can get wet. Just make the shower big enough that you can get in with her to turn the chair around and help her with her shower if needed.
Nothing is quick or easy anymore. It takes a good hour to 90 minutes to get a shower, dry off, get back in the bed and get dressed. Then and only then can I get myself cleaned up and ready to go - I'm worn out and sweaty just getting him ready. We always have to start very early if he has a doctor's appointment or anything.
My husband received a foam cushion with his power chair and used it from Sept. until April. We found out that we should've had a cushion evaluation, but no one ever told us. He has since tried a cushion that has chanels in it that they can remove air pods in some places and put extra pods in other chanels. That one didn't do good because it caused him to slide down some so that it made matters worse. Then he tried a cushion with air chambers. We pumped it up and then it had a valve that would redistribute the air from the parts he was sitting on to the parts of the cushion that didn't have any pressure. That one worked pretty good. However they had the best results in their pressure mapping with a cushion that has a hole cut out of it inside the cover so that he is suspended by his thighs and cheeks and no boney parts have contact with the cushion and therefore have no pressure on them. That one is the most promising so far. We will keep our fingers crossed. Once they say that is the winning cushion, the wound care doctor will give her blessing for him to get up more.
I hope you and your wife are having good days and can get out and enjoy life!
Thanks again,
Denise
Hi Denise
That was good information about the bathroom set ups and also the cushion information. Opening people's eyes to problems like the cushion is very helpful. If you have never been in those situations you don't realize that they can be so much of a major problem in the healing process.
As for my bathroom after reading what you had to say I think I could remve my existing vanity and replace it with a small one then make a couple of small modifications to the tub. Thanks for getting me thinking about what might be neccessary in the future.
I'm glad your husband mindset is on the positive side. It is so helpful to both the patient and the care giver. Leslie has been very positive and willing to fight to stay healthy. She exercises twice a day and I am so proud of her. We went out for a nice dinner Friday with her nephew and his wife to a new place on the water. Very relaxing.
My thoughts are with all of you reading this.
Walt
Friday morning, I was really looking forward to the weekend. Dan and I were going to have the house to ourselves for the first time in several weeks. Don't get me wrong, I am forever grateful to our family members who have taken turns staying with Dan so I can go to work while he was on bed rest. But it was going to be nice to have our house back if only for the weekend.
Dan has been running a fever and getting the chills for the past week or so. I called the doctor's office last week about this and she said we could wait until his appointment on the 18th. Well, when the home health nurse came to check on Dan Friday, Dan's blood pressure was extremely low (74/30). So, off to the ER we go. They admitted him Friday evening. I will spare you the details, but it was all related to his pressure ulcer. He had one surgery Saturday and another one on Sunday. He may have to have another today, but that's ok because we want this thing healed up - whatever it takes. In instances like this it is actually a blessing that he doesn't have any feeling below the rib cage. He will have to have reconstructive surgery at some point.
Hopefully he will be able to go home in a few days.
Walt,
So glad you and Leslie got to get out and have a good time with your nephew. That is wonderful! I know that lifted everyone's spirits.
Thinking of all of you!
Denise
Denise
I'm sorry that your plans for the weekend had to change so much. Hopefully this will speed up Dan's recovery of the pressure ulcer. Maybe this will give you a couple of minutes to yourself since you know he is being well cared for.
Thanks for the update.
I lost a friend to brain cancer this weekend, but he put up a good fight did better than all the doctors expected and went peacefully.
My prayers are with everyone on the forum and all of the police officers that defend our safety.
Walt
Walt,
I am very sorry for your loss. I know you will miss him.
Yes, Dan and I are both glad he went to the hospital. We are confident that this will speed up the healing process. Hopefully this will mean he can get back to his life a little sooner.
I have had some time to myself to do some things around the house and it has been nice being able to go to bed when I want to and not around a schedule. I feel guilty for even saying that out loud. I love Dan very much and would do anything in the world he needs to help him heal. I work a full time job outside the home and it is sometimes overwhelming.
I too pray daily for our country and the people who put their lives on the line to keep us safe. We need a resolution to all of this turmoil and strife.
Denise
When you have the time for yourself please don't feel guilty about doing things for yourself even if it is as simple as going to bed when you want to. It is important to take those little breaks when you can to recharge your batteries even to make you feel good about yourself.
I've eaten a lot of peanut butter and jelly sandwiches or grabbed a couple of cookies because I wasn't taking the time for myself. After things got into a calmer routine of medications, test of all kinds and doctor visits, I started taking care of myself a little better and I think that helped the overall situation.
So, please don't feel guilty. It sounds like you are doing a great job of being a care given. My hat is off to you.
Walt
Hello, I thought I might be able to cope better, if I spoke to some peers about my caregiving life. My name is Andrea. My Husband, Joseph and I have been married for 46 years. We were "Childhood Sweethearts". It has not entirely been a bed of roses, but we have gone through our ups and downs, and come out stronger than ever each time. Then in 2013 he was diagnosed with Esophagus cancer. He went through the chemo, and radiation, and came out cancer free. After recovery, he had his right knee replaced, having had his left one replaced before the cancer. He struggled with the physical therapy, but completed it, and things had sort of gotten back to normal, when he had a bad fall, and broke his femur in the same right leg. Upon being treated in the ER, they found his white blood count was high, so did an X-ray, and discovered he had Lung cancer. He was not a candidate for surgery, because of the location of the mass, nor did the oncologist choose to give him chemo this time, due to his debilitated physical condition. He had to have his femur repaired before he could have radiation. After surgery he had to go to a nursing home for PT. Then he had six weeks of daily radiation, which he completed in April of this year. He was still recovering from the effects of the radiation, and his broken femur, when he fell two weekends in a row. The second time he fell, he broke his hip. The Right one, of course! He was in the Nursing Home for PT for his hip, but this time insurance quit paying, saying he was not cooperating with the PT, and not making progress! So I had to private pay the nursing home while I try and sort out what I am going to do. I mean, I really am fed up with the whole Health Care System. Joseph has been through so much, and he always was a hard worker, and a good provider. I am frustrated because I can't get him the help he needs. He isn't even getting PT right now, he wants to come home, but I am so afraid he will fall again! Home Health is the only option I have right now, and cheaper than the nursing home, for sure. Oh, and did I tell you that I am working a full time job, balancing running back and forth to Dr.s and visiting with him at the nursing home as much as I can. He is depressed. I am depressed. I am not feeling good about him coming back home and I feel guilty for feeling that way. Oh my goodness...
Hi Andrea,
As you can see frustration is one of the major problems a care giver faces. Would there be any assistance from friends or family if you brought him home? People who could help during the day while you are at work. That might ease the situation until something permanent could be worked out. Can he (and will he) do some or all of the physical traing on his own? I bring up these questions hopefully to let you think about different avenues to take on this journey. The advantage of having Joseph home would be that you don't have to travel to the nursing home. I hope he is healing as well as can be expect in the situation. Have the doctors given any reason for the falls?
I see you are a cat lady (I have three), I hope they bring some calm to you.
Walt
Thanks for sharing
I saw this yesterday and I think you'll all agree that truer words have never been written:
"You never know how Strong you are....Until being strong is the Only choice you have". Author Unknown
I am not a nurse, but I play one at home. I can add wound care to my growing skills list. My husband has been on bed rest for 3 months trying to keep his current health issue from getting worse. It didn't work. After a week in the hospital and 3 surgeries, my husband has been back home for 4 weeks. He will be on bed rest for 3 -4 months while his wounds heal. I've been stressed out about work and about who is going to stay with him while I am at work, but have come up with a short term solution. My nephew is attending college in our city. He was looking for a place to live for the semester. Long story short, he moved in with us. He will be with my husband in the mornings and I can work from home in the afternoons while he goes to class. It saves my nephew from having to pay rent and it keeps me from having to pay for a caregiver (soooo very pricey - who can afford it??). A win-win!!
Now my mom's doctor is asking her to have multiple scans of her pancreas. She has been cancer free for 13 years now. I certainly hope and pray this is nothing serious. I will truly have a come apart if we get bad news. Please pray for her.
I have a seminar to go to Saturday - maybe there's one in your town too! It's AARP's A Time Out for Family Caregiving. It's a 90 minute caregiver meeting where we will learn more about how to build a caregiver support network, tips to care for yourself for a loved one, and where to find helpful resources. It's free. I am really looking forward to it. http://aarptek.aarp.org/caregiving/
I hope you all have a great weekend! Try to take a few minutes for yourself if there's any way possible.
Hi everyone!
My name is Ashton and I am 23 and a caregiver to my fiance who is 26 and a parapalegic. In May 2015 he was in an ATV accident which sliced his spinal cord and left him paralyzed. At the time we had only been dating a little over a year and then that happened. My only choice was to take care of him. At the time of the accident I was already working 2 jobs but I couldn't qualify for FMLA since we weren't married, so I used personal and vacation time. After a year of taking care of him by myself (since only one or two of his family members would help me) I ended up missing too much work which resulted in me losing my main job. Our state has the waiver program so I can get paid to be his caregiver, we just can't get married or else I lose that also.
I find myself becoming more frustrated and depressed as time goes on with everything. Everyday there is a million and one things to be done and it seems like only 2 of them actally end up getting done. In the end, I feel more like a caregiver to him and less like as a fiance. I just don't know what to do anymore, I am scared with how young with both are.
Sorry for ranting!
Thanks :)
Ashton
In may of last year (2016) my fiance was in a car accident and suffered a severe traumatic brain injury. He spent a month in the ICU and another month in a rehab facility. I was by his side almost the entire time. I think I spent a total of four nights at home and not in the hospital with him. He is home now and doing well, but he can't work and his memory is terrible. He is finished with physical, occupational, and speech therapy. He's started going to the gym, but it's very difficult some days to get him to do much of anything. He also has trouble controlling his emotions, and some days gets angry very easily and yells at me about silly things, like what we are having for dinner. While he was in rehab I found out that he had cheated on me, but I also understood that the guy in the hospital bed was not neccesarily the same guy who had done that to me, and so I stayed, opting to talk with him about it when he was far enough along in his recovery that we could have that discussion and decide what to do from there. Fast forward, and I'm still here. He hates that he did that. He can't remember specifics, but he has gone back through emails and text messages and told me everything that he knows that happened. I have forgiven him. He is a different person now than he was before, in ways both good and bad. I won't hold old him's actions against new him, if that makes sense. It was still a really hard thing to deal with, but it isn't something that causes me much stress at this point, surprisingly enough.
We don't have much money (I work part time) and we are still waiting on approval from SSI. Our family of three has been living solely on my part time income for ten months now.
His son has also had some behavioral problems since he's come home. He threatened to hurt himself the day after Christmas and was admitted to a psychiatric hospital for two weeks. Things have been better since he has been home, with a few incidents here and there, mostly when he is at his bio mom's.
All of this to say...I'm really struggling. When he gets upset and yells and throws his food in the floor because he can't remember telling me he wanted a bologna sandwich, I want to yell and scream and just leave. Five minutes later he won't remember why he was upset, and tries to tell me that he threw his food as a joke, that he wouldn't ever be that upset about something so silly...but I don't forget. I know that it is his brain injury talking and not necesarily him, but that doesn't make the things he says and does hurt any less. I'm tired of being broke. I'm tired of taking care of my fiance and our kid and not taking care of myself. They have been my priority, and rightfully so, but it's to the point that my mental health is suffering. I am writing grants and doing everything I can to try and bump my postition up to full time so I can get health benefits, but that means more job related stress on top of all of my normal life related stress. I just don't know what to do or where to turn for help. I can't afford a therapist. I can't afford to not work, but I also can't really afford to be away from the house much more than I already am. I'm not super comfortable leaving my fiance and his son alone together. His son is not very understanding of his dad's injury and is sometimes just mean to him. He tells me all the time that he's annoyed by his dad now, and it makes his dad feel awful. They bring out the worst in each other anymore.
I'm rambling. I just needed to vent.
I have been a care giver to my wife for nearly 4 years now, with each passing year getting harder to deal with. My wife has a long list of spinal issues most of which I can't spell correctly, from scoliosis to degenerative disc disease. She just had surgery in early March to relieve the crushing of her nerves in her cervical spine, fusion, disc replacement, bone graph and so on. As her condition worsens I am left to do everything, and I mean everything and I work a full time job as well. I 58 and I can't keep this pace up much longer, no family to help, all of our friends are no longer our friends. It is just the 2 of us and the cat and he's no help. I had pneumonia twice and still had to be the care giver and work. My wife does not have time to talk to me, she sleep most of the time but she complains I didn't spend enough time with her. What the hell!!! I only sleep 3 to 5 hours a night, and 5 hours of sleep is a good night.A home of any kind is out of the question, I've seen those places, even the "good ones" private pay and all, they suck. You have no idea of how many times I just wanted to end it, but I can't because I know that my wife would suffer a horrible end. I feel trapped, used, and unliked, forget love, that ship sailed long ago. Missouri suck as most states do when it comes to caregiver support. I just want my best friend back, this has put such a strain on our over 30 year marriage.
Hi, I kind of got out of the loop and forgot about this forem until I just got an email from them. It's been one hell of a ride the past few years. My husband pulled out from his multiple organ failure (from gallstones.. though his gallbladder had been removed back in 2009), his kidneys kicked back in, and he was pretty much back to normal.. even went back to work. It had been a long three months, but after had seemed like it never even happened.
I'm not complaining, because everyone (the doctors, and his 3 daughters) wanted me to let him go. I didn't feel it, and though I felt like the enemy I'm glad I didn't buckle into what they wanted. We were able to have another 1 1/2 years of him, and they were good ones. Ones that he kept working, and we did many things (concerts, plays, movies, outings, etc). He took me to Charleston last November for my birthday, and we had a lovely time walking around all lovely museums.. taking horse carriage rides.
Unfortunately, in the end his cancer spread as the Opdivo infusions did not work for him. He worked until the week before his death (loved his job), and even took calls when he was in the hospital. He was hospitalized for almost a week, and came home with hospice to die. He passed 2 days later, the end of January. I would not suggest inhome hospice for most. It was very hard on him and us. I had to administer morphine with other medications (and I'm no nurse). I got no sleep, and it was just very stressful let alone the stress from him slowly slipping away. I should mention there were 5 family members in the house, and even with all them it was a very difficult 2 days.
On his death bed he told his girls to take care of Karen and send her birthday cards. So sweet, but unfortunately one took it as now knowing where the hierarchy laid. It's been an emotional roller coaster for me. They all went home to their normal lives (their husbands, children, jobs, and regular routines), while mine is turned upside down and I'm trying to figure out it all. They can laugh, but I'm still crying daily. I thought we were close, but love quickly is forgotten when others feel it's all about them. It has become a me, me world. I don't get asked much how I'm doing, and there are seldom any calls.
It's now all come down to money, and them being unsatisfied with what's been left to them (apparently they feel entitled to more). They emailed our attorney for copies of our trust. I just get a sick feeling that they are going to drag this out, and all that will be gained are more attorney fees for me. Very sad!
My poor husband would be rolling over in his grave. I'm sure he never expected this from them. Especially after all I had done. I ended up with osteoarthritis in my knees, lower spine, left hip, rib cage and right arm from carrying the wheelchair (1 1/2 years ago) when he had to use one. It was only for a month I had to do it (he quickly moved to a walker, cane, and then nothing), so I warn all to be careful with any lifting. Meanwhile I'm stressed out from all this, and hoping it gets cleared up. I have enough to deal with, and the negativity just adds to it.
Hoping everyone else is keeping strong, so they can pull through these difficult times. If you have family and friends nearby to lean-on you should do so. We unfortunately live out of state from our family and friends... which makes it harder on me now.
After you've been together 24/7, and your spouse passes.. you find it is very quiet, and all that you did is now not needed. You have to find a new you. Difficult, especially if you feel you don't have the support needed and what you thought was your loving extending family aren't there as you would have thought they would be. Death can make people ugly, and stray away from what really is important.
seems like some people wait for an answer. Others wait for a sign to decide when done is done. She feels lousy about it as well. do you think she enjoys your child missing out on things that a child his age should be doing? Would telling her what she feels already about you wanting to leave an issue of anger or resentment? she doesn't like it just as much as you do but you can't hang on to hoping for change if you don't initiate it.
Karen I'm so sorry for your loss. There just are not words to describe the depth of pain and emptiness at the loss of a spouse. I hear that people forget after a few months and think your life just goes on and everything is fine. It's not. The first birthday, the first holiday they may think about. The first time you go back to a store and see something they would have liked or would have looked good on them, hearing a song they liked, opening a drawer and finding something with their handwriting, or an old phone with a recording of their voice the friends/family are not there nor would they be able to comprehend. You never know when you wil come across a trigger to a wave of grief. I'm sorry to hear your family is far away and unable to support you through some of those times. I cry every day but it is longer between the deep waves of grief so I guess one could say I'm improving. I'm at least functional now. I wasn't functional the first few months. I was in a fog just trying to go through the motions.
RenoViking caregiving is exhausting. Being your wife's advocate and taking care of her is admirable. You're right about the care facilities. I have issue with a lot of medical "professionals" as well. I toured many of the the facilities and I didn't like a single one. When you do the math of how long it takes to do the tasks for each patient vs how many staff is on duty to perform them it doesn't take long to figure out your loved one will be waiting extended periods to have their need met. The food was aweful.They were also not able to accommodate special diets is heart healthy, diabetic, renal, etc. It's terrible that our insurance and medicade will pay the cost of that but not for aid in the home to support familiys which is not only alot less expensive but where most people want to be. My husband preferred I do many of the tasks for him. He did not want others touching him. They did not care for him he felt safer with me doing it. One thing I read was about some situations from the perspective of the patient. It helped so I'll share. From their perspective they have lost all control. That is very frustrating for my husband. They are grieving the loss of all they used to be able to do, their hopes, dreams, and freedoms. They want a day off but that's not possible. They lash out.It's all they can do.I changed by asking questions and giving him as many choices as possible from eating, what to wear, what time he would like me to do xyz. It's difficult, , takes a lot of patience sometimes it may not make sense but it made him feel better to have some say in his care and how things were done. Compliments can go a long way. It sounds as if you are caught between your dads rules, you wife's needs, your son's needs, as well as your own. I hope you can find a better balance so that you may continue to enjoy and benefit from the love you share. That love is a precious gift that many never find.
My name is Kim. I posted here for a while beginning at the end of 2015. I stopped posting when I got locked out of my account. I got an email and thought I'd check in. Things were pretty rough caring for my husband but I would do it all over again. We were together for 32 years and almost made it to our 30th wedding anniversary. I can look in the mirror and know I did my very best for him, I know that he knew that as well. Even during the most difficult times we managed to find bright spots of hope and love. I struggle daily. I walked alone. I don't like being alone. I drove home from the hospital 116 miles alone. I was at my husbands funeral service alone. None of his children came. I had a few people I had just met at church and a few members of a volunteer group I joined stand with me. These people did not know us. In fact all but one had never even met him. These people had only just met me yet they were there. I prayed for God to put people in my path to help me and he did. He continues to do so. It's been 16 months. For some reason God chose to keep me here. I go to sleep hoping I won't wake up. Then I do. God must have some plan for me or work he wants me to do so I get busy doing it in hopes my chores will soon be through and I can be with him again. I volunteer in 2 organizations outside of church, and I am now involved in multiple ministries through the church. One of which is Eucharistic Minister to the Sick and Homebound. When does care giving end? Never for me. It's what I'm called to do. I don't want anyone to suffer alone as I do. I saw people left alone for months with no visitors in hospitals, LTC etc. The nurses tell me it's more common to have patients that are left alone. It's uncommon for American families to be activly involved.
I had minor health issues ie broke a tooth and had to had a procedure done. Not a big deal for most people but they knew it was too much for me. I had to be sedated a few times. Scary. Who do I ask to drive me? Who do I trust to take care of me while under the effects of the sedative. I put off getting the dental work done for months. I lived with severe abdominal pain for months. My husband is not here. There is no one else I trust. I struggle with a lot of things. There is a conference in the spring called Joyful again. My husband wouldn't want me to be this unhappy so I'm going to try and attend.
I've been married to my husband for 21 years, and within the last 10 years he was diagnosed with Parkinsons, mild Alzheimers, dementia, bipolar and was born with ADHD. His combination of issues has been complex. A marriage therapist about 5 years ago made note that he is a people please, which put into perspective the fact that I am not "first" in his life. Given that understanding, I have not failed to be the best wife an caregiver I can as he has become less able to navigate his life. I am now in the position of handling all aspects of his needs such as sorting and dispensing meds, scheduling, transporting (he can no longer drive), and getting him to doctors, dentists, and anywhere else he needs to go. I cook for him, clean for him, and in all love him dearly. I also handle all financial aspects, which is difficult for him because money is his God. We are in second marriages so our marriage was based on separate financial standing. He earned his living....I earned mine....and to this day I don't comingle funds. We split the household bills. Recently he dropped the bomb on me that he wants a divorce. He wants me to sign over the Powers of Attorney (Financial and Health) to his son, and sell our home. I'm overwhelmed and emotionally devastated.
01/15/2022
I live with Chronic Illness daily and would like to know who is available to offer emotional and community Service Support in the EL Cajon California area. My Email address: Jonesc748@Gmail.com
I feel depressed and really need to make a human connection.
Sincerely, Christopher Jones
Paul and I have been married 34 years. He's 84 and I'm 64. Doing well until the last few years. He has stage 4 kidney disease (it's under control), atrial fibrillation and congestive heart failure. He drinks beer every day - averaging about 8 per day, and now he's smoking cigars. His memory is shot. He hasn't showered in over 5 months - says his hormones are dried up, he doesn't have to shower, laughs and says he's a dirty old man. Two years ago, he stopped doing anything around the house. I have to take care of maintence, bills, cleaning, in addition to making his dr. appointments, ordering his prescriptions, and taking him to doctor appointments. Heard him on the phone yesterday telling his sister that he lives a carefree life and doesn't have to worry about anything. I told him I'm tired and he says "I know, I'm sorry". I have so much resentment built up that I don't even want to be around him anymore. His case manager says I need counseling but my insurance won't pay for it and I'm already spending a fortune on health insurance. He has no family here to help. My stepdaughter lives about a 5 hr. drive from here. She visits a few times a year and if I try to tell her anything about the situation she just says she's sorry. I'm sorry for venting. Thanks for reading.
Paul and I have been married 34 years. He's 84 and I'm 64. Doing well until the last few years. He has stage 4 kidney disease (it's under control), atrial fibrillation and congestive heart failure. He drinks beer every day - averaging about 8 per day, and now he's smoking cigars. His memory is shot. He hasn't showered in over 5 months - says his hormones are dried up, he doesn't have to shower, laughs and says he's a dirty old man. Two years ago, he stopped doing anything around the house. I have to take care of maintence, bills, cleaning, in addition to making his dr. appointments, ordering his prescriptions, and taking him to doctor appointments. Heard him on the phone yesterday telling his sister that he lives a carefree life and doesn't have to worry about anything. I told him I'm tired and he says "I know, I'm sorry". I have so much resentment built up that I don't even want to be around him anymore. His case manager says I need counseling but my insurance won't pay for it and I'm already spending a fortune on health insurance. He has no family here to help. My stepdaughter lives about a 5 hr. drive from here. She visits a few times a year and if I try to tell her anything about the situation she just says she's sorry. I'm sorry for venting. Thanks for reading.
I wanted to connect with someone out there who may be in a similar situation, but forget it. I give up. I'll deal with it myself.
Hi, Lora -
Thank you for reaching out and sharing a little bit about your caregiving situation. I am sorry I am just getting to a reply.
I don't know if you're still looking for resources but the Caregiver Help Desk might be of help to you. They provide one-on-one support by listening and pointing you in the direction of resources and supports that you'd find beneficial. You can reach out by phone by calling 855-227-3640. If you'd rather chat, you can click the orange "Help Desk" button on the bottom right of your screen. You can talk with someone at the Help Desk live from 8AM to 7PM Eastern, Monday through Friday but you have the option to leave a message if you reach out outside of those hours.
Please let me know if I can be of any additional assistance or if you have any additional needs/qiuestions.
Nichole @ Caregiver Action Network.