My husband's Parkinsons is worsening after a hospitalization. He is having difficulty standing and walking, although we are working on it with therapists. He cannot make it to the bathroom. He is also having difficulty with new information and has infrequent hallucinations. We have been trying to manage with home health aides and some of their hours are reembursed by his long term care insurance.I have looked at Assisted Living places that have room for spouses, but I am not sure I could live there. On the other hand, my husband may not be able to adjust without me.
I wouldn't go to a facility with a spouse if there were nothing wrong with me. My caregiving burden has been heavy for some time, and I'd want to try to have normal life again. I'd advocate vigorously for my DH, but from outside the place.
Visit often and advocate for him.
I wish you all the best.
I will say that [most] loved ones 'DO' adjust with time.
- Make his room comfortable, his own furniture.
- Have volunteers or paid caregivers come over to socialize with him / keep him company (develop other friendships/bonding/relationships)
- Take him out for lunch or a ride if this is a possibility - some facilities have buses / outings for residents (if they do, join him).
Consider:
- if facility has ind living area for this spouse or is she considering 'moving into his room' (I am not clear).
* Need to consider if she decides to move and it doesn't work out, can she still move back into her home (or would she need to sell it?)
* Depends on the severity of her husband's decline and how old / mobile the wife is - she could possibly have a very full life / a new life 'on her own' which might be very beneficial to her. (And visit as often as she wants).
There are no easy answers to this situation. Everyone, every relationship, is so different.
Gena / Touch Matters
It is progressing so fast, almost daily or weekly. He is falling, soon he will not be walking and there are other concerns which perhaps will get better, perhaps not. I reached acceptance that this is progressive disease and any complications could occur.
I am sure I would not go to AL with him. I was thinking about that at one point. And my husband would never want me to give up my life.
He was in AL recently for respite stay and it was beautiful place, seemingly, but no life. And very little assistance offered for over $300 a day.
And horrible food!
It is not for me, I want to be away from institutions.
And most people were 20+ years older than me, (although I have older friends but they work, travel, lead interesting lives). Most people in AL talk about ailments, complain about everything. To be honest I could not wait to leave. And that would cost about $15,000 per month for two of us.
And my husband probably in two -three years will need NH as per his neurologist. He will reach advanced stage and at that point he will be 2 people transfer. If dementia, incontinence show up then it will be beyond my ability to deal with all of it.
My story follows:
After 2 years of being sole caregiver for my brain injured DH, I realized that he was no longer improving and I was not able to give him the help he needed.
I found a beautiful AL facility for him originally just for a month of respite care for me. I felt guilty but knew we both needed that change.
11 months later, he’s content there and surrounded by wonderful caregivers who are trained to help him with his every need. The nurses are in contact with his doctors and pharmacy and me.
I hadn’t realized how exhausted I’d become, no time away from home or my 24/7 worries about him for 2 years.
My experience has been very positive, living separately after 57 years together. It’s better for me and for him and my visits with him are positive experiences rather than worrisome ones.
Good luck with your decision. I’m sure you’ll find the right one.
I’d suggest that you consider your age, your health, and how you feel about ‘trying to have a normal life’ after all that caregiving. If you think that your life will still revolve around DH, why not go with him? If not, stay living separately, visit as much as you want, and take a break for yourself. You don't know how well he will adjust until you try it for a good while.
Some people who have the resources choose to move to assisted living together (rather independent living with a continuum of care levels) well before either need assistance. I've seen some couples who are in very different places and feelings about it (one wants to do it the other says "move in with the old people? No way" )
You may feel better knowing also that you will have a plan for yourself if there is a continuum of care at the place you choose. You'll want to be sure it's a place that has enough to keep you happy and engaged. I wouldn't base the decision on his ability to adjust. That's a decision based on guilt and I don't think that's a great place to start.
There have been recent very informative posts about what questions to ask if an assisted living arrangement.
I hope others who have made the decision to do this (or not) will chime in with their experiences and thought process.
I'm sorry you and your husband are facing these challenges.
I have family with similar, tossing up IL, AL, higher care options etc.
Same as your situation in that the couple have different care needs. 1 has high care needs, inc mobility assist & some cognitive decline.
The other is currently independant but may benefit from housekeeping & cooked meals.
I have been researching Placement Service Agencies to ask advice. How to find the right level of care/quality of life for BOTH? How does double AL work? How does split care work? Financials??
IL. Indep apt within a facility - you will need to provide your DH's care yourself or have visiting aides as you are. So no improvement to now.
AL. A double room within a facility. Will your DH get all the help he needs? Will you have to do the lion's share anyway? (Because you are there & want to or he prefers you to others?) Will you be able to make social connections for yourself or attend activities you like?
Or will AL living mean you'll both be living HIS life?
Combo. High Care/NH + IL.
There places exist where I live (Continuum of Care model) but so many considerations.
Pros: You would be close by, stay very involved, visit your DH in his section multi times a day.
Cons: You may need to *buy into* IL. May be $$$? Maybe not where you want to live.
Eg Many here are modern tiny highrise apartments. Some folk love the city hotel vibe of that - others feel caged.
Going back to the double AL room idea.. Could you TRY it? Not *buy into* the AL facility but rent the room? For say 3-6 months?
Rent your own home out short-term, or if affordable, go between the two places? Try before you *buy* approach.
As.. I dunno.. quality of life notes..
I met a lovely couple when volunteering in a NH. Wife was heart-broken to place her Husband in care but his Parkinson's was very advanced. He was a tall man with much stiffness & while ususally calm, had lost his speech so he would get frustrated at times. Even with aides homelife had gotten too hard. I recall 3 x assist for clothing changes was required in care. 1 to smile & distract while 2 did the work.
So he moved to MC. He had his favorite recliner. Mrs would visit every night & they would sit after dinner together, just as they had done throughout their long marriage. Then she went home. To sleep alone she said through tears to me one night. But to get some SLEEP. Through MY tears I said how the staff had got to know him, what he liked, had become very fond of him. That they cared for him very well. That he was ok.
I have never forgot them. I hope my DH & I can be just like that.
So true, AL will be living his life!
Her husband needed AL, but she did not. They moved into the AL together.
When he needed MC, she stayed in the AL.
He passed away. She continues to stay at the AL, and even volunteers to greet new families. She has a name tag and everything!
She's very happy.
If you move in with him, you will have peace of mind that he is being taken care of. ◡̈
Firstly you will remain the primary caregiver in the eyes of hubby and of the facility.
Secondly you will be paying an enormous amount for care you don't need at present.
Thirdly, this is a decision you can make when and if you need to.
That's my thinking, but the final decision for you will be your own. I can't know how close you feel you are to needing this type of care yourself.
I wish you the best.
I visited such a care facility yesterday for lunch. I spoke with several residents, encouraged them in their choice of dessert, and hugged a couple of sweet little ladies. I enjoyed seeing their smiles, but I guarantee you that their struggles could make a normal person feel sad if surrounded by it 24/7 as a living situation. I was glad to be able to walk out under my own power and leave after the visit.
All that said, it was a very nice facility, and I would choose it for any relative if any of them needed that level of care.
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