Is it wrong to cope with caregiving by thinking this will only last another year?
I have been caregiving for my husband in some capacity since 2010 due to diagnosed depression and cognitive issues. In 2016 Parkinson's Disease was diagnosed and LBD. In January 2023 he fell (again), hit his head (again), but this time had a 7mm subarachnoid hemorrhage brain that did not worsen over 3 days in the hospital. Neurologist in hospital put him on Keppra to prevent seizures, stating it was standard procedure for his injury. Within a little over a week, being on that medicine caused him to be in a drastic dementia state and no ambulatory. No one told me it was the Keppra causing this. By the time we weaned him off his morning dose of Keppra and his mind cleared, it was 3 months later and the Parkinson's worsened. Even with PT he didn't regain his ability to walk. Fast forward 15 months and his Parkinson's was painful and he was no longer wanting to get out of bed into wheelchair. On muscle relaxer, pain meds. Hospice is involved. Currently, his cognitive ability has declined. He's tired and sleeps a lot for sometimes 3 weeks at a time, then is more awake and a little more talkative for a few days. It's a mental roller coaster. People tell me these ups and downs are typical for his disease. As it progresses there will be fewer ups and more downs. I have aids, have made arrangements for future needs (care trust, burial plans, etc.). He is at home, and I want him here, since I have help. I am overwhelmed with the thought that this may be his condition for years. I have coped by telling myself "just one more year". Then again "just one more year". I don't wish him dead, but open-ended caregiving is truly overwhelming. Kids grow up and care for themselves. Terminally ill people will be at peace in months to a few years. There is an end in sight. Is it wrong for me to handle caregiving for him one year at a time?
And yes it's like being on a roller coaster, and yes there's an end in sight that will come with relief, but trust me when I tell you that after your husband is gone, you will wish for just one more day to be able to care for him.
And that's the crazy truth of it all. Go figure.
When in the hospital 2 years ago for the head bleed, he was non-compliant, started hitting, kicking and spitting at the nurses. He was terribly confused as to what was going on and acted out. He was put in restraints and given Haldol. When I arrived he settled down. Once home, the aggression stopped. He was grounded again.
That's why the thought of him being in a facility is not an option now. He's mostly calm and seems content. He knows me, his aids and his dogs. And family. He knows he is home which is calming to him. His 2 pups are his happiness. I joke I've always come in 3rd.
I'm 60 and he is 74. Married 32 years. "In sickness and health". I like the advice from AlvaDeer to think " I'll do this only one more year" and see how each year goes.
But I thank you MeDolly for your advice. I do need to continue to be practical too.
What I did was place him in one of our rentals and hired 24/7 in home care for the last 4 months of his life, I visited him at least every other day, it worked for both of us.
I did not have one more year in me.
You need to do whatever you want, it is your life, your call.
Nothing is wrong with that. I am sorry, I know how mentally it is exhausting.
My husband has Parkinson’s disease as well. In hospital again for 4th time in little over a month.
Hospice already came last week to evaluate him.
He is still mobile but pain is becoming unbearable even with increasing morphine. He had ups and downs, it was progressing slowly through years, then last year by months, now weekly even daily.
I can tell you honestly I would be surprised if he survives another year.
I hope so but then again if it is going to be agonizing pain and this disease will ravage him completely then I am not sure if I want that for him.
This is no life either of you are living. The end comes as a relief for so many of us watching our loved ones suffering and slipping away on a daily basis. It's blessed peace for all concerned.
To be honest with you--it may be more realistic to say "I will DO this only one year more". That means that whether to keep him home or not, will be reassessed with honesty in one year.
We here have seen caregivers pass before their loved ones. I don't know what will happen to/with hubby if that happens to YOU, but it won't be as good as being in care with your loving visits, I think.
You say you don't wish him dead. In your heart of hearts, why don't you? When my brother was diagnosed with Lewy's we honestly considered if he wanted to make his final exit right then or if he wanted to go on knowing he would eventually lose control, the most important thing in life to him, and his mind. I would have assisted him in his final exit had he wished it. He said he hoped that he would pass before it got his mind, and he did (of sepsis, untreated, at home and on hospice). I hoped for that. Were I believer I would have prayed for it. When my parents passed, each so much loved and mid-90s, I felt nothing so much as relief and thankfulness they had to suffer no more losses and that I no longer had to stand witness to those losses for them.
To me, death is often deliverance. I am thankful for it when it comes in very many cases. I fully understand people who make their exit when life is too tough for them.
I am so sorry you both are going through all of this, but as far as your thoughts, please be accepting of them. There are no thoughts that you can have that are unique, trust me in that. Again, I am so sorry.
There is no right or wrong yet you are entitled to a life as well, he will not get better.
Sorry about this, it is a fact though.