I've been tired and probably burnt out for some time. My spouse has had health problems for years, but things always seem to keep getting worse. He's had COPD and heart problems(afib and heart failure), but fell the first part of January. The back pain got better, more like his old back pain. His heart was worse and ended up on oxygen at home. Things leveled off and I seemed to be getting a handle on things, then more. He had another stroke the other day, his back pain has gotten worse, and he's needing a whole lot more help. He's angry, not easy to talk to about things, complains about pretty much everything, and insist on continuing to smoke. He can't be left alone and the only help I really have is our 18 year old daughter. I've been trying to find a private caregiver I could get to come in some while I work just a day or two a week, but even having trouble finding that. I don't even know if that's a possibility now with the way things are going as he'll need meds(pain pills and inhaler) and he's on oxygen. He's on hospice and his nurse comes out once a week. I've called them some and the VA line, but I still feel pretty much alone and very fustrated. Venting and not sure what to ask, but wish these forums were more active.
Things Keep Getting Harder
Sun, 04/14/2013 - 09:35
#1
Things Keep Getting Harder
Mon, 04/15/2013 - 13:46
#2
Beyond Tired,
Beyond Tired,
Politly suffering in silence will get you nothing, to get help you have to fight for it. Call them and insist, then keep calling until they pay attention. They love to send out someone for an hour or two and then say how much help they are providing. Don't let them get away with the study the local rules for your area and use them. Talk to the doctors as well they can help you if they know about your problem.
Tue, 04/16/2013 - 02:50
#3
I've decided doctors are not
I've decided doctors are not much help at all, don't seem to listen a whole lot, and don't have time to talk about real stuff like all the books say you ought to discuss with your doc. I'm getting really tired of fighting. It feels like all I've done sometimes. Thanks for the advice, but I have talked to the docs. I had to fight even to get him on hospice because he has some of those diagnoses that doctors are always uncomfortable saying may cause death in about 6 months or less, though 6 months is not a set in stone guideline for hospice. At least his nurse is going to see about getting something to help calm him and maybe it'll help.
Fri, 04/19/2013 - 03:48
#4
I found hospice to be one of
I found hospice to be one of the best sources of help available. One of the things that I had to focus on at that time was the legal stuff and preparing to go on afterward. It's not easy, but please make sure your affairs are in order and that all end time wishes are made known. At the end the caregiver's job becomes that of helping the terminally ill transition, the one thing about it, is it gives us an opportunity to right wrongs or make amends if needed and to say good-byes. The Hospice I worked with had an inpatient program, but we chose to have my spouse remain at home (colon cancer), Self care is important and sometimes has to be done in small increments, you take it where you can. Just a bubble bath, a walk in a local park or sometime spent in some activity can allow you to recharge a bit. The Dr can provide nicotine patches and the cigarettes can be removed, smoking while using O2 is a danger for all-there are also pills than can be used to lessen withdrawal effects. (he's already angry and complaining, what's one more thing :) ) Try not to take his remarks personally - carry a Qtip in your pocket to remind you (Quit taking It Personally) remember he's bound to be frustrated and you just happen to be nearby-it's not nearly as hurtful if you can detach.
Fri, 04/19/2013 - 14:31
#5
Oh my!!!!!!! thanks for
Oh my!!!!!!! thanks for sharing I loved the Qtip idea. I have a 95 year old aunt that lives with me and she is angry that she is still alive. I have a 44 year old daughter that had a stroke then there is a son that has a fibulater with other health problems. Everyone is taking care of there self alot. 20 years ago my husband at that time had cancer and we had hospice they were a life saver to us and helped me and my children cope with the lost.Also helped my husband come to peace with the idea of dieing. I felt like it was a blessing. I found that when I was able to say how I felt about lossing my husband it helped me alot. there was a hospice nurse that sat with us and we all talked about it and cryed with each other. My husband also said that he was angry because he could not help us feel better because he was so sick. some of the things did not make sence at the time but in hind site they were a blessing. Keep venting on here that will help.And know that tomorrow will not be like today I have to take care of me or there is no me for them.love to you one day at a time and one step at a time is all that I have to do.
Tue, 04/23/2013 - 18:22
#6
Thanks for the tips
Thanks for the tips Ifnotforgrace and nicenience. I'm working hard at the not taking things personally part. Some things I have ready and some things I feel I have no clue, because there is so much we've not been able to talk about due to his anger. It's been a rough few days and I need to do better on the sleep. It starts making me loopy. His nurse comes tomorrow and I called her today about several things I thought needed addressed that I didn't know how.