My father had a stroke last November. My husband and I had moved in with him in July, a few months after my mother passed. At the time, he was able to live independently. We were staying with him until we found a house nearby. Now we find ourselves living in his house while he is in a nursing home. He can't get out of bed or wheelchair without assistance (his right side is very weak), hasn't mastered a pivot transfer or using a walker, can't toilet, dress, or bathe on his own, is incontinent, and we are told that he sometimes wakes during the night, crying out because he is disoriented and can't remember why he can't move his right leg and forgets that there's a call button.
I visit him every morning for a few hours and look forward to our time together. He seems pretty with it until about 3:00pm, then sundowns HARD. I've had a lucid talk about current events with himat 1:00, then call him at 5:30 and he's talking gibberish and thinks what's on the TV is real.
He is still getting PT and OT 4x/week. He has made progress, but he is unable to process what therapy is for. He thinks it's a waste of time and wonders why they don't just "fix it." He also forgets from day to day what he did the previous day in therapy. I have a feeling that he's progressed about as far as he might, especially since it's been over 3 months since the stroke.
Even as I type this, I see that Dad staying in the NH is the obvious answer. But he still thinks that when therapy is done, he'll come home. He has started to talk about how he can't wait to get out. I don't think he realizes how much assistance he requires.
Theoretically, we could bring him home if we were able to find 24/7 assistance. But my husband and I would find our lives drastically changed. We would essentially be living in a nursing home. And we're not sure we can do it. There are times when I think I can. My husband is against it. If a final decision is made that Dad will stay in a NH, we'd sell the house for him, as it isn't a place my husband and I would want to stay.
I guess my question is, has anyone else out there been in this position? What's the best way to have this conversation with Dad? He is still his own person - I'm the POA, but it hasn't been activated. He's pretty with it in some ways, but he lacks insight into his condition. He is already depressed. I'm afraid of saying the wrong thing or taking away his will to live. Every now and then, I think, "I could do this. I could take care of him." And other times, I think, "I couldn't do it. I'd be giving up my life, and destroying my marriage." It just goes round and round in my brain.
(Oh, and an added complication is that the NH Dad is in, which is a small, locally owned and fabulous facility, was just sold to an out-of-state corporation and will change hands in a few months. Sigh.)
Thank you to anyone who has insight. This forum was so helpful for me during my mom's last years. She had dementia and my dad was her only caregiver. He spent years caring for her at home because she was unaware that she had a problem and she refused to go into a facility.
Try not to have expectations. There may be rage or accusations or bargaining or crying or depression. You will have to know that any or all are a possibility. Is this not worth mourning, this loss upon loss upon loss that is aging? It will have to be faced by you both.
Get your G words in order as words matter. You will be grieving. Not guilty. You are a human being with flaws and limitations. Were you God this never would have happened in the first place. Allow yourself the grief. Not everything in life can be fixed, can be prettied up.
You Dad is likely ready for the conversation, and in all truth at some point here it will come, ready or not.
I am so sorry but there just isn't anything to be done about the pain in life we must all face and get through best we can. Wishing you the very best for yourselves and for your Dad.
Encourage dad to get better with his goal getting out of the nh. Realistically this is to help him graduate to a lower level of care if he can and not to come home, but he doesn’t have to know that yet or maybe ever.
You are right in that he is 24/7. Thankfully you’re not in the position of trying to do that to preserve inheritance. You have no conflict of interest in needing to stay there for your own survivability. Which means you do not have conflict of interest.
Whether he should be told the truth depends on whether you think he'd remember the next day and if you think it would benefit him to know. If a therapeutic lie ("let's see what the doctor says") is better in order to keep him from plummeting into depression, then take that route instead.
You know what needs to be done -- arranging for permanent placement -- so get the POA going and take care of your Dad.
On the one hand, I have been an in-home caregiver for almost 25 years. I've had many clients in his condition so it was feasible that I could do it. Other people have. I thought about the money too.
On the other hand, I was only responsible for a care client during working hours. My working hours would have been 24 hours a day 7 days a week if I took my father home. I did not have to get a home renovated to accommodate the client's care needs. My elderly toxic mother wasn't on the job with me sniping at the clients night and day which is how her and my father communicated my entire life. I gave each equal thought.
I did not take my father out of the nursing home because I could not care for him myself. There would be no help for me with his care. Whatever money he had would have gone towards renovating my home and making it handicapped accessible.
My father was less than a year in the nursing home. He gave up the will to live and died at the age of 91. Try to move your father to a different facility that is not corporate owned if you can. You already visit him every day. You're doing the best you can and God bless you.
Don't take on more than that. Bringing him home and becoming his 24/7 caregiver is a bad idea. It's also okay to compassionately lie to him if he has dementia. Tell him the doctor decides when it's safe for him to go home.
If found he is 24/7 and there is a NH facility attached, you can have him transitioned over or if not find him a facility. If he has money, pay for him privately (it will get him in a facility faster) and put house up for sale. It must sell for Market Value if Medicaid will be needed in 5 years. All proceeds go towards his care. Keep settlement records. When Money is gone, apply for Medicaid.
If he has no money you can start the Medicaid application. Once the house sells, though, Medicaid will stop until money is spent down, then it starts again.
The end of acute rehab can be a brutal drop down to earth.
The dust settles. You see what the damage is.
For some with mild CVA recovery gains are enough to enable returning home. Maybe with more services/supports.
For others, a more supportive environment is required. Around the clock care may be needed.
Vascular dementia is a label that describes the brain injury post CVA. Even though it may not be 'terminal' or even life-limiting like Alzheimer's I believe the kindest thing is a comfort care approach. A safe home. Some familiar belongings. Kind carers. Meals he can swallow. Activities he can join in. Rest when fatigued. Brain fatigue by later afternoon is common. I think of it as birds returning to their trees to be soothed.
I will add it is ok to feel incredibly sad about the situation. Instinct tells us to wrap someone up & bring them home. But love is a separate thing to the practical needs of 24/7 care.
Use your sadness towards adding kindness & joy to this life he has now. He is a stroke survivor now. You have this extra time.