Hello, fellow caregivers! Although I spend a great deal of time reading the forums and looking for advice, I find myself in need of a reality check. For the past 5 years or so I've encouraged my now 90/91 year old parents to move out of their three story house and of state to be closer to me. I have two siblings who did pitch in a little to help with them, but even that was enough. When push comes to shove, my mother always looks to me for support and decisions. She rarely, if ever makes decisions on her own. Dad has stage 6 Alzheimer's, mom functions fairly well on her own and takes care of him during the day. Last summer mom indicated that it was getting to be too much and asked if she could move them into an independent care community near me. I told her to come into my home and we can make a decision about the appropriate level of care for them, but that setting up a new condo in an independent care community was unreasonable and would give me a second residence to care for. Long story short, they've moved in with my spouse and me. Dad's disease continues on its destructive course, mom is bored to tears sitting in the house doing nothing all day, and the conversation about them moving to an assisted living facility have gone nowhere productive. I've taken them to visit several and she gives me a polite, "that's nice," and we move on. She insists that she is not going, and would put him in memory care, but not go herself. She is his world and separating them would be devastating to him. Here's where I need the reality check. I did not sign up for this. I have a demanding job and my spouse and I have previously enjoyed basically being in control of our home and our time. We loved to travel, and now a weekend away is impossible. I will likely retire in the next five years, and we may want to start looking at downsizing. Now every waking minute is consumed with making sure they're needs are taken care of. I have to bathe my father, which is uncomfortable, shop for groceries, tidy up behind them, etc. Dad is incontinent and has lots of difficulty in the bathroom. The house smells like urine, their bathroom is a struggle to keep clean, and I've had to insist on mom taking proper care of disposing of his diapers. The kitchen is cluttered with their food and snacks, and we have gotten to the point where we rarely eat at home. Now my spouse and I are feeling as if our marriage isn't stable anymore. I feel like the walls are closing in on me. They are well off financially and as far as I can tell should have no concerns about money. Am I being unreasonable to want them to move into a more appropriate care facility? How can I "unstick" myself. I was only trying to help solve an immediate problem, not take this on in any permanent way.
dementia and there was no way she could keep up with his care due to her own
mobility limitations and health concerns. Friends and neighbors pitched in as much
as they could, but she often refused help because she felt she should do it all herself.
When they finally went into care, the husband ending up really enjoying himself, but
his wife was so spent from care giving she died a short while later.
Modern care giving often necessitates outside help. Our fantasies about the good old
days are just that--fantasies. Several generations ago we did not have the medical
equipment, medications and procedures we have now to prolong life. We did not have
atrocious processed diets that lead to severe physical and cognitive decline. We did not
have every adult in household needing to work outside of home to make ends meet
We did not have fractured communities as many people stayed put or maintained close
ties with community, with church, as most women did not work outside home and were
able to create and maintain these community ties.
The world we live in is different, for better or worse. There is nothing wrong with
finding a quality retirement community with different levels of care. Many seniors
thrive on having others to socialize with that share their common interests. They
enjoy having strong cheerful young care givers who have the strength to transfer
them without causing their own bodies injury. To have 24/7 access to nursing staff and
doctors. Many adjust and thrive, provided the facility is of high quality and flexible
enough to provide two entirely different levels of care.
Having one spouse with dementia and the other in IL is not uncommon. Spouses can
still spend the day together and maintain their close bonds. The bottom line is many
of us are not able to provide the care a dementia patient needs. And even without
dementia in the picture, caring for a limited mobility parent with incontinence issues
can cause injury to care giver if they're not in great shape and untrained. My back is
a mess now as I reinjured it from several old accidents and then added a new injury.
All from dealing with transferring and incontinence.
Good luck with your situation. Hope you find a solution that works for everyone!
(((hugs)))
I hope you find something that’s works for you.
visit all the time. And still get to have a life.
I remember watching a couple who had no children, decide that the dementia
patient could never exist in memory care. That he'd hate it so much it'd be like
a death sentence. So his wife and neighbors, friends, etc pitched in to help.
It was not a good situation. It got to be where both were living in absolutely filthy
and unsafe conditions.
What ended up happening is that they both went in together and he LOVED it!!
His wife died shortly after. Caregiver burn out. : ( . Incredibly sad.
In the good old days people lived in large extended families. They lived in same
town. They all went to same church. There was a large community to pitch
in and carry the load. We don't have that anymore. SNF and AL are the new
communities like it or not. I've been to some very very nice ones. Keep looking
until you think you've found a couple of good fits and give her choice.
And just my two cents: I would not say anything about your marriage, just say you're
going to be downsizing. Be matter of fact about it. All I know is that when I've appealed to logic and common sense I've gotten guilt tripped, shamed or otherwise manipulated. Be polite, professional, and opaque-- keep everyone's feelings intact and
give yourself the most graceful out. Good luck!!!
I don't think your father's "needs" or "wants" should take priority over your mother's. His brain is broken. He's not capable of making those decisions anymore. And I agree with others that it sounds like your mom is probably past ready to retire from caregiving and doesn't want to get "locked away" in a place she doesn't really belong.
Again, forgive me if I'm mis-reading the situation, but it sounds to me like the solution to unsticking yourself is you accepting their separation. Your mother is already there.
To me, the most reasonable solution seems to be moving your father into memory care, moving your mother into an independent living situation, and getting her some home supports in place so you are not the one looking after her new home.
Are they paying anything to stay in your house? Nice for your sibs that your free caregiving (and room & board?) is preserving the inheritance. YOU should have been paid from that money for all the caregiving you have been doing for the past year.
Mama won't be happy moving out. Accept that. But you need to get them out to preserve your health, your sanity and your marriage.
So, what changes can you make in the household to ease the burden on you and your husband and the feelings your parents are experiencing?
I wouldn't recommend private duty as for me it was a bad experience, but you might be able to find some assistance if you can actually find a good company. Many of the tasks you're performing could be done by others.
Is your father a Vet? Get him registered for medical treatment and (a) ask about in home assistance and (b) their very good caregiving support program.
You're not being unreasonable; you've recognized a glitch in the planned care, now it's time to address it and find alternatives. If you think of it that way, you can keep the emotions out (hopefully) of the picture, to the extent possible.
Good luck, and please feel free to ask more questions or come back with alternate plans.
Difficult. She wanted to go to the IL community, remember. That they're now living in your home instead is your doing - I know you know this, I don't mean to rub it in, I'm just saying it needs taking into account.
I'd keep looking for more flexible facilities, aiming for one that provides continuing care and has a greater spectrum among the residents.
But to expect your mother to accept what she sees as incarceration in an asylum, tied to your father... you can see why she's not keen.
Meanwhile. Any day centres or groups they could join to get out from under your feet for a couple of afternoons a week? These *could* be separate - if your mother is still caregiving at 90 she must be desperate for a break by now.
Explain to your mother that she will have to "pick one" of the lovely places you have toured with her. Say this move to your house was temporary and now there are things happening that may have your marriage end in divorce. Yes, that's harsh, but she needs to see the reality- that they need to live somewhere they can both be taken care of in their own ways.
Revisit the "chosen" facility and make arrangements soon for them to move in.
My husband and I were in the same boat when HE suggested that we move my Alzheimer's stage 6 mother in with us. (The other facility she had been in raised the rent too many times and she couldn't afford it.) BIG, BIG mistake. (I tried to tell him.) Within 3 months, we were snapping at each other and, at times, barely speaking.
NO ONE is worth tearing your marriage apart. You can't please all of the people all of the time.
My mom now resides in another less expensive Memory Care facility. She and we are much happier.