After 2 years of struggling to care for my husband as he became progressively weaker, refused to perform simple exercises given by his Neuro NP, my husband became unable to get himself up to a standing position. I am in year 3 of a 3-5 year life expectancy with blood cancer, am 82 and now seeing a cardiologist. Between responsibility for him, me, a house and all that goes with these things, I’m exhausted and warned him that by not trying to keep some strength, the day would come I couldn’t care for him. That day came. After calling the FD 10 days in a row to get him out of his lazyboy and into the bedroom, I arranged Skilled Nursing in the facility he would go for 5 days of Respite every 9 weeks. He’s not happy and calls wanting to come home. I tell him it is under his control and give him a simple excercise to begin with. From the side of his bed and using his walker, stand and sit 3x. Do this 3x a day to start. He won’t do it. I’m crying off and on throughout the day feeling so pressured and knowing I cannot care for him, won’t care for him if he won’t try to help just that little bit to regain some mobility.i just don’t know to handle my feelings of guilt and having to keep telling him he can’t come home until he gets some strength so I don’t risk my own health. He seems completely oblivious to my health issues and the exhausting work it is to be the only person caring for him FT along with everything else. It breaks my heart when he calls and asks if I’m coming to take him home. Even if he is “working” me it is so painful telling him he can’t come home until he regains some strength, which he is obviously not going to do. Has anyone dealt with this? Do I just keep telling him no?
He won't be happy no matter what happens. Keep that in mind, and save yourself. You've done the best you could, and nobody could have done it better.
As for telling him to do exercises, he no longer understands what you want or need, nor does he care. You're holding onto a false hope, sad to say. If you could accept where he is now in his health situation, if you could realign your thoughts to "he will never be able to come home" so you won't constantly be faced with disappointment because he doesn't care, you might start to feel better. You might need to consult with a licensed counselor to learn how to do that.
Please stop taking all his calls. That's not helping either of you. I wish you peace in your heart as you come to grips with all of it.
How can you possibly manage him for 9 weeks back at home?
If he fails to get stronger, is he going to remain in the skilled nursing long term?
I'm so sorry for how this makes you feel. I know it is not easy for you, and it's heartbreaking not being able to have him home again. But, realistically, you simply can not take care of his needs if he can not stand on his own. All you can do is remind him of that reality when he asks you to come and get him and take him home.
All the best to you both.
I agree with others on silencing your phone and concentrating more on your own needs now. Do you have someone who can help you around the house with repairs and upkeep or perhaps thinking about downsizing?
My dad had dementia and while he lived with my mom, she was too upset by it all to make any decisions and I had to do it, including deciding to transfer him to a hospice facility and telling him he couldn’t go home because he lacked the strength to stand. He was very angry. He passed 2-1/2 years ago. Now, my mom’s mobility is getting worse and she also refuses to do even super easy, simple exercises. (She has no dementia that I know of). So, I feel you. And I have deep respect to you for facing the truth. Give yourself credit and grace.
Even if you weren't in the midst of your own health issues, at 82 years old, how much physical exertion do you think you would be able to safely do? There is the very likely possibility that you would cause serious injury to yourself trying to lift your husband. What good would that be to anybody?
Even if there is a "reason" for your husband's lack of empathy to your own health crisis, that doesn't change the position that you are both in at this moment in time.
Difficult as it is, if I were in your position, I would think quite hard about placing him permanently. If you take a sudden turn for the worse, it will be better for you - AND him - if he were already somewhere being taken care of. The last thing you will need at that point is the additional stress of finding care for him.
I hope you can find peace in your heart; yours is truly a heart-breaking situation.
I am sorry for what you are going through.
You have a terminal blood cancer. You need to take care of yourself first. When you are traveling on an airport you are told to put on your own breathing device first before assisting a child.
Lower your expectations on what your husband can do. It does not sound like he understands why strengthening himself is important. It does not sound like he can remember to do exercises. I think his brain has declined such that he has lost empathy and he cannot learn new things.
Consider letting his calls roll into voice mail. Call or visit once a day.
Consider transitioning to full time at the skilled nursing facility.
I think its time to permantly place him. Talk to the facility office and then get an Elder Lawyer to split your assets. His split paying to take care of him. When almost gone you apply for Medicaid.
I say this because it will be so much better to already have him placed if and when something happens to you. If no family, the State will take over his care.
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