Follow
Share

Hello; First time poster here.
Wife 53 YO Bi Polar had stroke 2012 (fairly severe) has had open heart surgery (Mitral Valve Repl) chronic pain sufferer from Osteo Arthritis and old spinal injuries and now from the stroke. Incontinent. Has been in and out of 3 rehabs and more Hospital and ER visits (mostly from falls.) Every time they release her from these rehabs she does fine for a few weeks walks with her walker uses the bathroom wears regular under wear, has no incontinence,and eats well etc.Then for some unknown reason she backslides into worse shape than before the rehab. Has home Health Rehab folks come by (to not much avail) someone to come bathe her etc. No other in home help is available as I write this. I am the sole care giver. I'm disabled (but mobile) from my own stroke 2 yrs ago. I'm 67.She can't get Medicaid because they say our combined income is too high. The task of caring for her is simply too much for me to handle physically. I told them that at the last rehab and they discharged her anyway. She refused to appeal the discharge "I wanna come home" I told her that I could not take care of her as I've been as it's just too much. I don't like admitting that but it's true and I'm suffering the consequences as I write this; it's literally killing me. I can't stop her from falling even when I use a support belt (she weighs more than I do) and if she does fall I can't pick her up. I have to call EMS. She fell on top of me awhile ago and I got injured too. This falling is dangerous. She tries to walk unassisted and falls. There is no help available from relatives; friends; etc. Had a roomate/caregiver for a time but she bailed..Her condition has declined to the point of her being bed and wheelchair bound. I have three agencies trying to place her in NH but we can't find any that will take her. (No beds; No medicaid; low SS income). I'm at wits end with it all. Now her condition is declining further and after her last fall she just keeps telling all involved "I just want to die" when we do discuss the subject and I ask her what happens after the rehabs she says she needs more encouragement form me. We had been separated for years; when I had my stroke she lived with me (rent free of course). And took care of me. She does need encouragement; but I find it difficult if not impossible to provide much in the way of "happy, Happy" when faced with the 24/7 job I must do; and it IS a job. Worst job in the world; especially if you're disabled.
As I stated she keeps saying she just wants to die; she smokes 2 packs of cigs a day hoping she'll have a heart attack; keeps asking me how she can kill herself.......Takes meds for the Bi Polar but it rears it's ugly head regularly and I get verbally abused in the offing. She's also on opoids; but if she takes enough to eliminate the pain she "zombies out". My point in this whole rant is that I feel guilty for agreeing with her not wanting to live; I haven't voiced that sentiment to her but I wouldn't want to live that way either; so what the hell do I do? If she feels that way way strongly enough for long enough she probably will die from one cause or another. I just do the best I can with what I have and watch and wait and hope that I can find a facility where her full time care will be provided and she'll be comfortable. Thanks everyone for letting me vent here. Hope I' in the right place for this post.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
Three possibilities: check your area for P.A.C.E. (Program of All-Inclusive Care for the Elderly); ask your doctor if she is eligible for Hospice and if you're retired military both/either of you may be eligible for VA assistance.
(0)
Report

Thomas, I have no advice...just wanted to send some words of support. Caregiving under any circumstances is hard...this site has always been a great avenue for venting and also showing compassion. I'm wishing you the best.
(0)
Report

Thanks for your response Caring. Living in Tampa Fl can't downsize income........ALF won't take me as I have an open wound. She has mobility issues and probably wouldn't adapt to an ALF living style; can't live by herself and can't use a wheelchair alone. The real problem with this situation is that I'm disabled too and physically incapable of taking care of anyone 24/7. Thanks for your interest and support.
(0)
Report

Thomas,

Your last post was 5 days ago so I hope you see this. Not that I have any vital information, I just want to welcome you to this site. I'm so glad you found us.

My mom was much older than your wife when she went through something similar. She wanted to die. She had been sick but the cancer was removed, she needed no chemo or radiation. She did well in rehab. She came home, went to bed, and died soon after because she never got out of bed. The only way I could get her into the hospital was one night, after she fell and my dad called me to come pick her up, I pretended that I couldn't get her up. We called 911 and because she was a little loopy from pain meds they took her to the ER. While in the ER I asked to speak to the nurse alone. When we met out in the hall I told her my parents' situation. That dad couldn't care for mom, that mom won't get out of bed, and that I needed her to be admitted for evaluation. I called it a "domestic situation". They admitted her.

I'm so sorry that your concerns about bringing your wife home were not heard. You may have to make a little more noise. Upon discharge from the hospital my elderly father was asked, among other things, "Do you feel safe at home?" There's a screening process in place upon discharge and I think if you squawk loud enough about having difficulty taking care of your wife your concerns will be heard.

Again, welcome to our little corner of the internet. I'm glad you're here and look forward to hearing more about you and how you're coping.
(1)
Report

When a person starts to feel like they want to die, I just tell them that the Lord is not ready for them to go, they still have work to complete. If she feels that way don't deny her we can't predict our time here so let her just pray and you pray with her. It is normal for her to feel depressed just let her know that you do understand and you don't want to see her suffer but it's just not her time now. Maybe you guys can down size your income and go into an AL where you won't be alone and she can get the proper care, and you guys can be together and she don't have to be in a skilled facility. If you down size maybe apply for medicaid again and you could get help.
Good Luck
Stick it out with your baby she is just going through something!
(0)
Report

what area do you live on?
(0)
Report

Thank you all for your responses. I'm a newbie here so.....hard finding my way around the site right now. Kinda lost really. Wonderful source of info and advice and I'm grateful.
(2)
Report

I would consider divorce to separate the finances. Talk to your attorney about it. You don't have to abandon your wife emotionally, but legally your resources could be separated.
(3)
Report

Know the feeling, we can't get medicaid for mom who is 87, cause she has an insurance policy and the home care agency doesn't seem to be able to fill the times that I need care for her, so I guess it will mean my job. Have you tried any other agencies, like Agency on the Aging in your area. Seeing as both of you are disabled is there no agency in your area dealing with strokes? See what the social worker from the hospital can put you in touch with.
(0)
Report

Firstly, I am so sorry you and your wife are suffering such ill health at such young ages. I worry for you: too many times have I seen the caretaker die before the one being taken care of. It sounds like your wife has mental health, addictive as well as physical issues. Perhaps addressing them will help her progress physically. Like quitting smoking before she burns the place down! Is she open to getting help for these issues? Will she go to counseling? Sometimes counseling can help the caregiver get their head together. The one thing you cannot save a person from is themself. Do you think her regression can be induced by her overmedicating herself? Maybe if you can get her the help she needs, you would be what she needs. I would think a good PCP might be a place to start.
(2)
Report

Thomas you are at the right place to vent. Hope you feel safe coming here to do that. This caregiving is so hard no matter how we look at it! I wish you strength this day.
(1)
Report

Thomas we all feel your pain so come here often and you will be with friends. I would just add to the advice already given that next time she is hospitalized refuse to take her home. It is clear that you are physically unable to care for your wife from your description. Your wife certainly has reason to want her life to end. Many people here will have religious objections and rightly so about suicide and assisted suicide and I am in no way advocating any form of assisting another to end their life but if something happens where you feel you have contributed just by for example not hearing her call if she falls in the night please do not even consider that you have any guilt. We are taught that we have a merciful God and that he acts in strange ways but never asks us to carry a load heavier than we can bear.
Your wife may enjoy a better quality of life in a N/H and decide that life is worth living but it will be a struggle to get her there and you may have to take actions you would never consider in "normal" circumstances. So do whatever has to be done while you still can. I hear the train coming so get yourselves off the track, pull up your big boy pants and get to work. Involve your wife, you are both in this together caring for each other so one does not demand more than the other can give. Present a united front you are part of a team now whether or not you still feel united in marriage. If you refuse to take her home she has to agree before you have another stroke and both of you need placement. She needs to be part of the solution not the problem. Your question to your wife needs to be "If you stay home how are you going to care for yourself?"
(3)
Report

So sorry for your situation. You need the services of an elder law attorney. I read on here about a way to set up a trust that gets all your income and pays it to Medicaid or the NH or SOMETHING so that if your income is too high but not enough to pay for a NH, you can qualify for help.

Talk to your local Area Council on Aging. Also talk to someone at a NH that she might go to. They can explain things and tell you how others have worked out such problems.
(1)
Report

I hear your pain Thomas and my thoughts are with you. My 81 YO dad has some similar issues and often said he just wants to die and that he has lived long enough; I believe that was the voice of an addict with uncontrolled bone pain. He moved in with us (11 hours from the only home he has ever know) partly to receive a pain-pump to control his back/neck pain - OA and degenerative spinal condition; 11 back/neck surgeries w/rods, screws with one donated bone graph and many other surgeries. Periods of intense pain, etc. I was worried about the operation to install the pain-pump and the compound meds that are loaded into the pump and released directly into the spinal nerve. After a couple of months - nearly ALL pain subsided with the pump meds adjusted to just the right dose. Now, he rarely takes a pain pill and occasionally takes 2 Advil. His brain is no longer craving the drugs but his body is wore out. He should have gotten the pump years ago!! He knows every one of his meds and if I slip-up and miss one - he calls me on it, and he should....but that is not the mind set of someone who wants to pass on; otherwise he could just refuse his meds and bring death sooner. Of course I would have to report that action to his doctor. Only once in a while he will say that now and I believe that indicates he need a little more attention that day:)
He is also taking Pristique - a wonderful anti-depressant. It comes in 50mg and 100mg. New and expensive but the manufacturer will assist with cost.
Do stroke victims have an organization like American Heart Association or National Breast Cancer Org? Might be worth a Google for any assistance available to you and your wife. Good luck and remember, it's a marathon not a sprint. Hang in there and visit this site often, I'm a newbie here also trying to navigate my way to being a better caregiver and daughter.
(2)
Report

I'm 52 yrs old, sole caregiver for my mom. I can't imagine your situation. I've been sick for a week, work full time. My boss is ready to fire me for being tardy. I agree with you a NH. However, there are people here that have more skills than I do on these matters. I'm barely making it day to day myself.
(0)
Report

Yes, you are in the right place to vent and get advice, as well as emotional support. I'm not the one with the advice that will help you, but somebody with a similar situation, and more experience and knowledge than me will be along soon. All I have to offer right now is support. Caregiving is extremely hard for those of us that are able bodied, I'm sure it is extra hard for you. It's obvious that both you and your wife suffer from situational depression, which more often than not, leads to full on depression that needs to be treated medically.
Venting is very necessary.....like a steam kettle.....you don't want to explode. Reading other posts here will show you that you are not alone, and that helps a lot. There are always ears here to listen. This place has been a Godsend to me personally. Good luck and God bless you both.
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Subscribe to
Our Newsletter