She’s wheelchair bound; she can’t stand up alone due to her extreme fear of falling, won’t even cooperate with a physical therapist. BUT when she desperately wants to get out of there, will try to stand up out of her chair only to fall down. At night she flails around in bed trying to get out of it..and then what? fall to the ground! She has a long-term catheter because she’s unable to pee without it.
She’s currently in a nice clean 6-bed facility. They take good care of her, but she desperately wants to come home. When I visit (daily), she’s fixated on going home with me and demands I don’t dare leave without her, when I must eventually. It’s horrible! I’m alone, am 85, and I can’t possibly give her the help she needs at home. Now again I ask, is in-home care for her a real possibility? I personally don’t see how it could be, but asking anyway.
It sounds like she is Sundowning. This is a feature of dementia that usually starts to happen in the afternoons. The "home" they wish to go to is actually their childhood home since that's what is in their long-term memory.
At-home care is possible but is it beneficial? The caregiving arrangement has to work for both the care receiver and the giver. In home care for her level of need will be very, very expensive. Eventually 24/7 in-home care will exceed the cost of a facility.
If she is a fall risk at night, how do you expect to get any sleep? Even if she has devices in place that prevent her from successfully getting out of bed, could she still scream for you?
Others will post their personal experiences. I wish you much wisdom and peace in your heart as you come to conclusions.
If you are going staying into the late afternoon, maybe leave earlier. They always want to go home but its not always the last one she lived in. Could be a childhood home. They take good care of her, then keep her there. I knew a man who had to finally place his wife. He went everyday and had lunch with her and stayed till dinner time.
I don't know how bad her dementia is, but if she's actually talking about going home to YOUR home, this is really just a case of not being able to accept the inevitable changes that life brings to us all whether we like it or not. There's no reasoning that will fix the situation, just acceptance or a life of misery.. Ultimately, our bodies fail us and they dictate where we life
It's something we all dread, and unless we're "fortunate" enough to live a fairly independent life then die in our sleep, it's all going to come to us one day eventually.
Also one of the ladies in my caregiver support group cared for her husband who had Parkinson's and Lewy Body dementia in their home until he passed last year. She did it on her own until hospice was needed towards the end, but he too became completely bedridden, so she didn't have to worry about him falling.
So unless you perhaps have a hospital bed that she couldn't get out of and hire some in-home help, you may want to leave well enough alone.
Lewy Body dementia is pretty aggressive, and the life expectancy isn't typically very long,(5-7 years)so it may be time to bring hospice on board even if she stays where she's at.
I wish you the very best as I know how hard this all is.
May God bless you and keep you.
My husband has Parkinson’s but no dementia and is independent, he does not need help with meds, has mobility issues, walks on his own but uses walker as well.
Your wife would benefit from PT, as it is helpful not just for mobility but pivoting, but as I know nothing about dealing with dementia it is hard to say, but, maybe worth trying another PT.
You already know the answer. As hard as it is, she's probably better off where she can be cared for and not by you. You are wonderful to go see her everyday. But let the CG's do their jobs.
I'm so sorry for what you are going through,
Have a plan for how to change the subject after you tell her this same answer to going home every day. Be ready to talk about something else right away.
Maybe she needs some additional anti-anxiety pills?
That said, I am so sorry you are faced with such a situation. That illness of this magnitude has put your wife AND you into such a state where you're both miserable and suffering daily. Where she is insisting on 'going home' and you're faced with dealing with her demands all the time. That is very wearing on a person, I know. My mother lived in a wonderful Memory Care ALF for nearly 3 years with advanced dementia and I had to deal with her wanting to 'go home' and all sorts of other ugliness. It wears a person out, is what it does. It lingers on one's mind and strips the joy out of life. It creates guilt and a sense of a dark cloud hanging over everything, and like we don't deserve to laugh or feel good b/c our loved one is suffering so. Is that how you are feeling too? If so, I get it. I'm not sure there's any 'answer' to such a situation, either, and if there is, I wasn't able to find it myself for the duration of my mother's stay in Memory Care. The only relief came when God called her home this past February and took her out of her misery and back to wholeness once again, to be honest with you. Nobody wins when disease of this caliber is present; we all suffer.
Sending you a hug and a prayer for peace with such a sad and debilitating situation.
we had lunch /dinner everyday .. lots his favourite foods … takeouts etc …
i think he understood He needed lots care was always happy see me and I hope he forgave me … but the guilt was always there …
he was safe and well cared for and I was with him everyday… we were able to be husband and wife with dignity till end .
No one person on their own can safely provide the level of 24/7 care your loved one (LO) likely needs now. Safety and proper care for you have to come first, even over the pleadings of the LO to "go home."
In know from personal experience -- dealing with my mom in a similar situation -- this is so, very hard. It breaks our hearts to hear the "take me home pleadings" from a LO, but that reality often is not possible.
I am not a physician, not a nurse, not a physical therapist, not a psychologist, not a dentist, not an optometrist, not a social worker, not a podiatrist, not a dietician, not medical transport, not a 24/7 on-call aide; all of which my mom's highly rated nursing home has and she needs all of those services. Trying to be or take on all of these positions -- so proper and safe care is proved to your LO -- as one person 24/7 is not doable. It is not feasible.
Accepting what your LO wants is not feasible is the hardest part. Trying to explain it to them is unrealistic too because with dementia their ability to understand and reason -- much less remember -- makes such explanations impossible. Best as others have said, to come up with a brief simple response and to get comfortable say the same thing every time the topic comes up: "When the doctor says it is safe, we can talk about it then." And then change the subject; distract and redirect to an entirely different topic if you can.
Now if resources are not an issue, it could be a different matter. We have another family member -- she is 96, has dementia and host of other issues, including not able to walk, not continent -- who has remained at home. Her husband left her with a boat load of money. So her adult kids opted for spending it all on 24/7 care so she could remain home. The cost for 3 full time aides -- they split shifts for the week -- is $10K a week and that does not include the weekly visiting nurse or other services. At $40K per month plus the other expenses, it will be about about 1/2 a million for the year. Obviously, most people do not have this level of resources for quality 24/7 care at home......
Read up on reflective conversation. Start using those strategies.
Example....wife "I want to go home." you "I'm sure you do. The doctor says you need to stay longer. Tomorrow there are some good movies on TV. Do you want us to watch ____ or ___.
Whenever she starts talking about going home you need to immediately change the subject in conversation. That is called reflective conversation or redirecting.
Be at peace with yourself and your present care arrangements in the facility for her; I know this grieves her and you, but you really are doing the safe thing for you both.
It is common for patients in facility care to guilt trip and beat up on lived ones visiting about wanting to go home. Redirect the conversation to something else. If she continues unrelentingly, gently say you love her and that you have to be going and will see her again soon. Do not stay for long visits or even short visits that are not healthy for either of you , and , listening to her go on and on about an unrealistic request is unhealthy for you both. Speak with your community support such as your pastor or a local chaplain to get self support as you make this long arduous and grief provoking journey with your wife. So sorry ....
Peace
How did you find a six bed facility?
Can you physically lift your wife when she falls? Get her in and out of the shower? Up and down stairs? To and from appointments (and in bad weather)? Will she actually do PT at home? Will you become a recluse because she might fall when you leave to run errands (or have a life)? Can you manage little things… like twice the amount of laundry? Her catheter? Retrofitting the car for a wheelchair or buying a van? Calls to come home when you run errands? The “I need, I want” fetching? Bad nights sleep because she flails and falls and keeps you awake? And everything else?
Someone posted an incredible insight about why mom can’t come home when their visits were so much fun. She said “I want to be your daughter, not your unhappy, stressed out caregiver.”
Your wife’s begging guilts you into questioning yourself when you know her care is beyond your capability. And since you love her, her pain and false belief that you can solve it must hurt on a visceral level.😔
Sending a 🤗.
My MIL cared for my FIL with dementia by herself at home. He too constantly asked to “go home”. What then?
You are doing the best thing possible for her. Perfect just doesn’t happen at this stage.
Caregiving will definitely threaten mental, spiritual, emotional and physical health.
If I were 85 years old there is no way.
My mother desperately wants to go home as well, which is her childhood home with her parents. I think that goes with dementia.
As it is, you can sleep at night without interruption, you can move about life as you see fit - you're not trapped at home. If your wife comes back home, those two things will end for you.
Even if you can afford night help, unless you live in a castle you're going to wake up and hear anything that goes on, thus interrupting your sleep.
I am speaking from experience. I was determined to take care of my husband who is 80 and has late-stage dementia. I tried everything from adult day care to full-time caregivers. My husband was "home," but never in his mind. His "home" was some fictional place where he was well and independent.
During the long five years of the ravages of LBD w/parkinsonian expressions and taking care of my husband's needs, my health deteriorated to the point where I am now on life-saving medications. I neglected going to my doctors because I was consumed with all the medical care of my husband. I just didn't have the strength to schedule appointments for me.
The good news is--my best friend and my son and his wife encouraged me to place my husband in a continuing care facility. July 5 after a 6-month long search. Within seven days after placing my husband I got Covid. I tested positive for ten days. Serendipitously, not being able to visit him allowed him time to adjust to the facilities routines, activities, and to develop friendships. He learned to accept the reality that I couldn't visit him often and that if he wanted to survive, he needed to depend on others rather than on me. In a way, he grew up emotionally.
Meanwhile, I am concentrating on staying alive so that I can manage his care, Doordash him surprises, shave him twice a week, and enjoy the little time we have together.
https://www.continuingcarecommunities.org/assisted-living/california/fontana.html
I'm late to the role of care giver but I envision the end game some describe and it scares the hell out of me. She is 84, in dementia, Type II diabetes and neuropathy below both knees. I want the best care for my wife, lover and best friend of 59 yrs but I am truly her CONSTANT companion and feel my own health slipping. That can't be good for either of us.
I'm in Virginia midway between Fredericksburg and Richmond if you can point me to a really good assisted living (if that's the correct thing to be looking for) that you've found for your loved one.
Best.