Caregiving broke my spirit | Caregiver Action Network

Caregiving broke my spirit

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Caregiving broke my spirit

My dad went into the hospital on election day. We had no idea that his subsequent stay in the rehab facility would become permanant. I still considered myself a caregiver as there was as much if not more to do as his advocate. And he still turned to me whenever he needed anything and I would make sure he got whatever he needed. I brought him treats, I had meals with him, and I visited him 4-5 times a week. I was the "established contact" as far as the facility was concerned. I was taking care of everything.

5 years ago when we realized that my dad couldn't live alone I went out and rented the first house I could find that was elder-friendly (step in shower, no stairs, etc). Financially my dad and I became roommates. Once we realized that he was never coming home I had to find a place to live and FAST. Medicare was going to drop my dad which meant that his income was going to go to the facility and not to the upkeep of the house I rented in which to care for my dad. So we had about 2 weeks in which to find a new place to live and move. And to make matters more complicated this was all during the holidays.

But we got it done. We got moved. I love our new apartment. We had to move outside of the city limits so now we're about 45 minutes away from the facility.

I was running on pure adreneline, pure stress, when it was brought to my attention that I had not turned in a form I was supposed to turn in a month prior. This was a mistake of epic proportions and is costing us dearly. This was also the turning point when I realized that I couldn't do it any longer. I couldn't continue to be caregiver and advocate and mother and employee. I broke down on the phone with my brother and he stepped in. And while the mistake I made was huge, my brother didn't blame me. It was a mistake after all and I could not have felt worse about it but it was a game-changer.

Every time I'd walk into the facility to see my dad I'd be accosted by various staff and business people asking me questions or needing something from me. A phone number, a signature, permission, copy of a document, etc. My brother took over all of that. He became the 'established contact' person but no one in this God-foresaken facilty communicates so I still get calls. I still get accosted the second I arrive or the second I try to leave. I just refer everyone to my brother. I'm not playing anymore. I visit. I do the laundry. I still bring my dad treats but I refuse to speak to anyone unless it regards my dad's health and even then I'm only partially paying attention.

I've become so depressed and so down on myself because of the mistake I made. I made it right, I backtracked and we're ok now (I hope) but I can't forgive myself. Everything I had shared with my brother up until that time is now questioned. My brother gets different answers than the one's I gave him and this infuriates me. I know what I've been told and it's not like I pulled information out of the air but the information my brother gets is different than the information I got. But my credibility is shot. I know for certain what the Dr. told me however this moron of a Dr. told my brother something completely different and because of this huge mistake I made it looks like I'm the one getting the information wrong but I'm not. I understood the Dr. perfectly.

I've lost my faith. I planned on going to Mass at the church in my new town but I had been crying a lot of the day and was too depressed to go. My nightly prayer consists of, "Please make it stop. Please make it stop. Please make it stop." Meaning the stress. Please make this unrelenting, crippling stress stop.

I know it's horrible but there have been times when I wished that my dad would pass away so all of this would stop. I'm so unhappy these days. My health has been affected. It's affected my relationship with my daughter. It'll probably be the end of my relationship with my brother.

I've worked harder advocating on my dad's behalf than I did as a hands on caregiver. It's been a full-time job. Neverending phone calls, gathering documents, finding out where to get other documents, insurance papers, trying to use my PoA and NO ONE wants to honor it! It's not like I'm trying to get money with the stupid thing. I tried to get the previous 3 months bank statements of my dad's and had to argue with the bank for over an hour and I had my PoA. But I'm done with all of it.

I don't give a damn that my brother has a full-time job and a wife and 3 kids. Let him deal with this crap from now on. I can't take it anymore. Just today, on my way out, I was button-holed by someone needing information and I told her (with some satisfaction) that I was no longer the responsible party, here's my brother's phone number, call him from now on.

And while my brother didn't complain he did tell me that he spent all morning on the phone getting this and that squared away. I said, "Did you get frustrated?" with a note of triumph in my voice and he said, "No, it was just a few phone calls." But I know it was NOT just a 'few phone calls'. It was the equivalent of trying to throw a wedding in 3 days and I know it! I've made those calls. I've tried to make those arrangements. It takes hours and hours to do a lot of this stuff.

So now I'm the weak one. "We'd better not bother her, she's close to cracking." What no one realizes is that I've already cracked. No one knows I cry everyday. No one knows I pray every night to make it go away. No one realizes the extent to which this has affected my health. I've barely been to my job in a week.

I hate that facility. I hate is so much. They take pretty good care of my dad but to me it's the source of misery, misunderstanding, miscommunication....I now walk through there with blinders on, ignoring anyone and everyone.

I was a hands-on caregiver for 5 years. I don't know how people do it longer. 5 years and I'm done. I'm a different person than I was even a month ago. My dad doesn't like that my brother has taken over. He wonders where I am all the time. He prefers me and I feel sorry for him that he's put his faith in me, the wrong person. He thinks I can do no wrong.

((((((((((((Jen)))))))))))))) I'm so sorry this has affected you to this extent!! It bothers me that you cannot forgive yourself for the one oversight. Sure, I understand that it is a huge deal and had a lot of repercussions, but you're ONE PERSON and you've been trying to cover so many bases for so very long. It is good to hear that your father is receiving good care. That is key. You need to take the time and energy to take care of yourself now. As you said, let your brother put his catcher's mit on and see how many balls you've been fielding. Defer the questions, signatures, etc., to him, and let him see how challenging it's been. He is, after all, your Dad's son, and I feel he has an obligation to help with his care. Go in to visit Dad like you have been, and restrict your focus to his happiness and comfort and health. Your brother can handle the rest. You held back for so long in asking anything of him, it's time for him to step up to the plate. Sending prayers up for you as you work through this, dear one. ((((((((((((((More hugs))))))))))))))))) Love, Gab
Irish, You have heard me say
Irish, You have heard me say this before . . . The one person hardest to forgive is your self. Now having said that, YOU KNOW at any given time you were and currently are doing the best you can for Dad. Shoulda's, woulda's, and coulda's are not going to change the present. Love yourself & forgive yourself. Take it to the confessional if you want to know you have rec'd God's forgiveness. Love, Colette xoxoxo
(((((Gaby)))) I'm so glad to
(((((Gaby)))) I'm so glad to see you! Thank you for your words of encouragement. ((((CharMING)))) Love that name ;-) Thank you for checking in on me. It's tough getting used to the new website, eh? But I'm finding my way around. I hope everyone makes the transition.
Jen, you've done a great job
Jen, you've done a great job taking care of your father. Please do not allow anyone to make you feel badly because the truth is that no one else knows what you have done all those years (because you were taking care of him---not them). No one has the right to criticize you or judge you. You did the best you can and you are still doing the best you can. Being able to take care of an elderly parent is something that most people cannot do. Your brother has never cared for your father and he only came along after your father was put into a facility, so he has no right to say anything to you. You cared for your father in your own home, and took care of all his needs. That is monumental. You sacrificed your own life to take care of your father. Not many people do that, and you should feel very good about yourself for having done it. You need to put the administrative mistake into perspective----forgetting a paper is a mistake that anyone could make and it has nothing to do with how you take care of your father. So you made one mistake having to do with paperwork; it's nothing. Forget it. You did so much for your father and you are the one he still thinks of as his caregiver because he knew and still knows how much you care about him and have helped him. Everyone likes to judge and criticize but they don't know what it's like to be a caregiver because they didn't do it. I get judged all the time by people who don't have a clue and see my father twice a year for an hour. Yet they think they know better than me about how to care for my father. I have decided to distance myself from all those judgmental people. My father is still living alone but I am realizing now that he cannot. I had an aide but my father sabotaged it by staying in the other room whenever the aide came, and refusing to even take a sandwich from the aide. So all the responsibilities fall on my shoulders. I think about bringing my father into my home, but my husband doesn't want to (although he would if I insisted). My husband is afraid I will give up my entire life if my father lives with us and he is afraid I will get sick (I had cancer several years ago but I am doing well now). So I am now at a point where I have to figure out what to do. I don't want to put my father into a nursing home. After reading your stories, it confirms that it will not ease my burden. I hope that you can find your spirit again. It's important to look at things in a more positive light. You have given your father an amazing blessing by being a devoted daughter.
Sometimes I think people
Sometimes I think people forget these diseases are Progressive. There is no cure or recovery. There comes a point if your loved one lives long enough-help with care is required. The dilemma is when is it time? We have to put 1st things 1st-we need to get those "forms" (God I hate forms) in order (Ming had a list of em on the old site) as soon as possible (sometimes that may even mean court). Fix Trusts if there are any assets, separate bank accounts do all those hoops in preparation for the day LTC may come. If Our loved ones die at home and never have to go-then it was insurance, but IF there comes that time we have to let them go to LTC, it's invaluable. E-lass is still doing a great service and demonstrates that even when LTC is necessary it still takes a toll.. but Heatherrose taking 24/7 care is more than most imagine. Anyone who has done it can relate to everything in the OP..5 yrs-Gosh..I won't make 5, won't even try. I was batty in the 1st 2 weeks, a nut job in 6 months and have quit twice (& it gets easier everytime) in a yr. My Marriage suffers, I physically suffer and Dad is still not happy. Mom according to our GP is killing herself and likely to die first from the strain.or if Dad don't kill her (he's become physically abusive She was struck by a man for the 1st time in her life at age 83 I was able to do a manual hold as he was about to strike her again with a cane)..She has been through more hell than anyone, it's been horrific. and it will only get worse-Mom still feels guilty for even considering LTC. Geez..not me. He needs it, She needs it and so do I. For me..If I had it to do over..I would not have tried to tackle it at all. I would have made preparations at the first diagnosis of dementia-and LTC would have been facilitated BF Alzheimer's developed. (Add Parkinson's) No. It has change me too as well as my Mom and none for the better. I am no more a qualified caregiver than I am a dentist. the whole deal has destroyed my family and caused hard feelings that will remain long after the 3 principles deaths. We deal with it, because we were hesitant to do the best thing at the onset. Our emotions over ran our brains. Now we suffer the consequences and still we are headed where we tried so hard to avoid going. So all the suffering the "caregivers" have done and the families could have been lessened..that's my point. But I will easily "forgive" myself & Mom and. . . and..b/c we made a mistake. For us trying to live up to a community standard and other people's expectations was a mistake. Few manage to get through the process with out severe damage (healthwise, financial or otherwise) and watching the decline of your loved one is no easy task. If you have a family-they are affected as well. LTC is a form of transition and there is no shame or disgrace to it. JHO but there is nothing to forgive when one has served, given and continues to be devoted. To require forgiveness implies a wrong. Not being perfect does not make one wrong, it makes one human. We are all human. Let us be gentle with ourselves and with others when they have done their best or even if they haven't