My mother (age 78) moved into a memory care facility at the end of June after my father (age 85) and I (age 40) tried many home caregivers and our situation was not sustainable. The facility is great. Not perfect, but miles above what I feared we would be dealing with. Expensive as hell though, but worth it, imo. She hates being there and asks to come home constantly. She says she feels like she's in prison, but the fact that she's even talking is a big improvement over what we saw at home.
After a very rough transition for about 6 weeks, my dad felt guilty and started bringing her home on the weekends. He has a really hard time wrapping his brain around her dementia and often gaslights himself into thinking she is in better condition than she is. She is extremely intelligent and so knows how to mask her symptoms pretty well and can often appear much more "with it" than she actually is.
I was against his choice to bring her home on weekends because I felt it was not allowing her to adjust to the facility properly, and because when he brings her home on the weekends, he doesn't do anything to take care of her so it's all left to me to do.I am a full time nanny and need to be able to have a weekend to just... not be a caregiver to recharge for the week again.
I have been trying to stay firm to the boundaries I laid by insisting he do the caregiving if he wants to bring her home, but it's incredibly difficult when it's 1pm on Sunday and I realize he hasn't even gotten her out of bed yet. So inevitably, I fail and end up taking care of her anyway because I'm not willing to let her suffer because my father is not a caregiver like that.
Most importantly, the difference between her at the facility and her at home is night and day. Every single weekend she comes home and just sits on the couch, staring at the tv, not even comprehending it most of the time. She doesn't really talk, doesn't get up and walk around, doesnt interact with anyone, doesn't eat (anything other than snacks and sweets), nothing. We have to drag her out of bed in the afternoon because she just sleeps in forever. She won't go for a walk or move off the couch.
At the facility, they are all up and doing activities at 8am. She's eating actual meals more regularly, getting up and moving around all day, and she actually talks! She gets to interact with so many people every day and she's a very social person. She is a bit of a stubborn curmudgeon about all of it, but she's doing it and she's benefitting, whether she sees it or not. She even helps my dad and I complete crossword puzzles now daily!!
But when she's at home, she's quiet and not complaining, so it's easier on my dad's guilt. Whenever she has a few more bad days/moments where she's upset about being there and accusing us of imprisoning her, he starts talking about moving her back home. I think it's a bad idea and have been trying to point out all the ways in which she does better when she's there vs at home. To me, it's being irresponsible with her care to consider moving her back and forth like this.
Has anyone ever moved a loved one OUT of memory care and back home? My big fear is once she is home again and he remembers why we moved her there in the first place, he will change his mind again! Ultimately, as her husband (and the one paying for the facility), it's up to him to make the decision.ive been trying to find any articles that talk about whether it's harmful to move someone with dementia out of care like that but cant find anything that fits our situation.If anyone has experience with this I would love to hear about it!
Complaints are the NORM in placement. They are the norm for families that find the care imperfect. They are the norm for the elders, who, as my brother in care said, is one of two subjects the elders sit about expounding over every day. His comment: "Pretty much we have time to sit in the gazebo and complain about everyone and his or her shortcomings all day. That and watch the ambulances and hearse coming and going".
That's the truth. This isn't a great time in life. Not a happy time.
You are in the position now where you are taking on the "happiness" of loved one who cannot be made happy in this time, and the ruination of your own life as you jump on the burning funeral pyre WILL NOT LEAD TO HAPPINESS FOR ANYONE.
I am sorry to be so blunt. But that is the fact. And if you make his mistake I will be proven right.
The even more sad fact is that YOU ALREADY KNOW THIS.
I wish you the best whatever your decision. Truly I do.
Your mother is where she needs to be. Her brain is broken. Right now she is as good as she will ever be mentally and it is going to get steadily worse. It's too bad your father refuses to see that.
The well being of the entire family is important, not just your mother's.
She’s also had metabolic encephalopathy which exacerbated her dementia .
She was placed by her son in a lovely board and care home last November . She finally agreed to take Aricept . Between improvement of the encephalopathy and taking Aricept , she improved a lot . However she still has fluctuating cognitive problems , which is common with Lewy Body . She can have weeks of being really good and then some not so good. She is also very intelligent .
This past May she showtimed so well at the neurologist and she strong armed him into saying she could go back home to live with her son whom she has lived with for a dozen years because she’s terrible with money . My sister who is again able to get on her doctor portal insisted that Dementia be removed from her list of diagnosis ,( which the doctor did despite having scans to prove Lewy Body ) . Sis insisting that her encephalopathy was the only problem and that it’s cured . My nephew sent me the doctor note from that visit . He basically said she had improved and at this time can not see any significant symptoms of dementia preventing her from going home. My nephew contacted the eldercare lawyer he has been using . The eldercare lawyer said because his home was her legal residence she has the right to go home . He said all he could do is either have my sister go out on her own and fail , or she goes back with my nephew and finally starts paying him rent for the first time . And at some point the eviction process would be an option .
To back track a bit , the only reason she had money for the board and care home is because a spinster aunt died and left sis money in her will . That money came after many months of my nephew being at his wits end living with my sister . She is unreasonable , and my nephew was a prisoner in his own home with her.
Nephew decided it would be more work moving her into her own place and dealing with her failing . He also felt he needs to save her money for eventual placement again . So sis is back home with my nephew . She pays him rent but he just places it in an account to use for her later. And of course now she’s going down hill again. My poor nephew is at square one again , stuck with her in his home being bossy and unreasonable , slurred speech , paranoid etc . She will not allow a companion in the home either. She believes there is nothing wrong with her and says she will never need a nursing home and “ no one will ever put me away again “.
My sister believes I was the driving force in getting her placed . She thinks I “ hate old people and just want to put them all away “. She says this because she remembers I placed our mother and my FIL in care due to dementia .
My sister knew what my mother put me through so , when my sister first began having dementia symptoms she asked me to support my nephew in placing her when needed which I did .
I’m fine taking most of the blame since this is what she tells herself . She does not want to admit it was necessary . She does also say the doctors diagnosed her wrong and that her money was wasted in care she didn’t need . She refuses to believe she ever was unsafe alone at home while my nephew worked . He had to work from home for awhile but his job was about to fire him if he did not return to the office. Luckily , she ended up in the hospital with encephalopathy , then fell and broke her hip in rehab , had surgery , back to rehab . Finally going to the board and care home from rehab last year . But now she is back home .
My nephew’s life is a living horror again as she is so stubborn and unreasonable and continues to complain how her money was wasted on the board and care home. I feel bad that my nephew is so isolated again. It’s not fair to him . He walks on eggshells in his own home .
Sis says “ no one is ever going to put me away again “.
I hope he doesn't act on his emotions. I feel for him and I know how gutted the fact of your mothers decline must be for him. I am in a similar situation with my parents and there is a fine line a child needs to walk. This may need to be a little manipulative on your end in a loving way of course. You need to gentle support your fathers feeling but be very clear it is not in the best interest of either of their health. I would also involve the MC facilities DON and Social Worker to intervene and guide him to make the decision for your mother to remain in MC.
IF he does make the very unwise choice to discharge your mother and bring her back to live at home you will need to become very "uninvolved" with the situation. Visit and make very clear that you do not support the unwise decision and will not be involved with any crisis. And, in the best interest of your mother, you may need to contact APS to report neglect if your father fails to care for her in a manner that is unsafe.
I have much empathy because I do realize the emotional conflict of the situation. Wishing you the best of luck.
Happy walks out the door when dementia arrives. Mom is going to complain about anything she can, partly to get your (and dad's) attention. "Poor me, poor me, you are so cruel to put me in this place where I have everything I need and people to take care of me." So dad falls all over himself to make her happy, which is not happy.
You are completely right, and dad clearly counts on you to make up for his shortcomings. What if you didn't? Do not agree with dad one single bit. Make yourself scarce. Walk out of the room if he starts in about moving her home permanently. That is something that he would regret, you would regret, and mom declines when she doesn't have regular meals, friends, and activities. She's in the best place she can be!
I wish you luck with this horrific problem. Suggestion: whenever dad starts in, ask yourself if you are enabling his wrongthink. The answer will more times than not be YES. Refuse to enable him or mom or anything that interferes with the goal of mom's staying in the facility. And by the way, my husband is in a fine facility, and I see the benefits of this type of care every single day. Moving him home would be unthinkable because he has been helped so much by being there. I want him home - but that can never be. I had to come to peace with that, but your dad gives no sign that he can.
Don’t do it!
So be clear with your father that if he brings your mother back home that you will NOT be doing any of her hands on care and that he will have to hire full-time 24/7 care for her which in the long run will cost way more than than the memory care facility she's in now.
And perhaps you can share with your father just how devastating it is for your mother to keep having her routine disrupted by him taking her out of the facility on the weekends. People with dementia need routine and do so much better when their routine is NOT disrupted in any way. He is actually hurting your mother more than he is helping her, and that is so very selfish on his part.
Maybe you need to let him read the responses from your post. It may just open his eyes a bit.
Go out of town.
Go camping.
Be scarce.
Father appears to have cognitive decline also.
Do not bring her home on weekends and do not bring her home permanently.
If so start getting a cheapo airbnb room or local motel on the weekends.
Provide "0" support.
She shouldn't even be spending weekends at home. Why does your dad bring her home on weekends? Because he thinks you will be there to take care of her?
You already know it's a bad idea. But, I don't know how you persuade your father.
For starters, you need to find a way to remove yourself from this situation. Leave on weekends. Your father will see you as her caregiver, you need to change that.
And, for heaven's sake, you do not need to get her up out of bed, if she wants to stay in bed all day, all weekend. Let her. Stop enabling both of them to think this ridiculous weekend visit is worthwhile!
nightmare. Don’t know the answer.
needs to place loved one in the assisted living area in order to qualify.
It is a tough decision to do so, but still allows person to have care needed.
We are fortunate in that the senior living where spouse is currently in memory but can transfer to assisted living, knowing our wonderful
care partners in the area, can still take care of him. I think what pulls us
down is the escalating costs that adjust upward as loved one needs
more care. In same situation and only know once money gone, that is
only option. I can " help " in small ways but no longer able to manage
24 hr care that is needed. I am myself am in assisted living. Hard for
outsiders to understand this constant stress on how to manage. At one time we were using aides at home, but then the hourly rate increased
and needed minimum of 4 hours. Then it was the higher cost for evenings
and weekends and holidays. A nightmare if aide calls off. It was less to
move out to senior care but still a big bill to manage. How a spouse manages at home ,paying all those bills, no to mention handling repairs or
replacing high cost items like furnace.
Not sure your age, but we were both doing fine, just entering our 70's.
Within a few days, life changed. We were okay and then we weren't.
Many we knew were able to age in place at home for a few more years
and had hoped we could still carry on the same for awhile. For us, we
grieved over moving from our home which was so much like a safe and comforting haven. A home full of wonderful memories
for us. Our beautiful gardens my husband created were so soothing, kind
neighbors who were like family. The sudden loss of one's life as it was
and needing to adapt to new life is not easy. Being pulled in so many
directions for all that is occurring, wondering what the next day will bring
and trying to hang tough.
I just try to hold onto each moment, treasuring the days we are still
together because I am not ready to let go yet. Read a comment about
dementia - the wife said when her spouse was undergoing those challenging changes, she told him she would remember for both of them.
Keeping all of people in this forum in prayers.