We moved mom with dementia from her home to Memory Care 6 weeks ago presenting it as a rehab to get to bottom of stomach issues. That worked for about 10 days after which she said they weren’t doing surgery there and she wanted to go home. We met with her and with staff and said doctor wanted her to stay 90 days so they could adjust diet and adjust meds to get her feeling better. She participates in almost all the activities but as soon as a minute free she is in nurses office insisting we are picking her up. She has had her stuff packed in bags for weeks and when we visit she says are you here to get me, I am all packed. Mom tells us to go to hell when we say no just to visit and she has to stay for a few months. They increased antidepressant and added anxiety meds. She has ocd and she is hyper focused on leaving. Staff is saying they want to tell her she is staying. They think she fixates on it more which a timeline and her dementia is not so severe that she is going to forget. Outside social worker says absolutely not, it would devastate her. So confused as to which way would be better. I agree she will not forget and just settle, but is it too soon to tell her? She thinks there is nothing wrong with her and she can take care of herself. We were paying a caregiver for a year to do groceries, make food and spend a few hours with her daily at home who mom thought was a paying tenant. Things were getting worse and safety was becoming a major concern. Thoughts on easing the transition for her?
At times, the hard reality is there is 'no easy' or easing in for this kind of adjustment.
- Expect she will continue to express anger, frustration, disappointment at you/the family. She is confused and scared - perhaps getting varying information from different people/staff - or it is simply a matter of her wanting to go home and focused on that.
- While easy to write, not easy to do: Do not take her responses personally and try to emotionally/psychologically detach yourself from her reactions.' This DOESN'T MEAN to not feel compassion and caring for how she is and how she feels. It means to give yourself 'room' (a buffer) to be more present with her due to not taking in / absorbing her frustration, while taking care of yourself, TOO (important).
- And, then it would help you to realize you are GRIEVING this situation, her loss of independence - so allow yourself to feel the grief - and perhaps talk to a social worker (on staff) and/or get a therapist to help you through this period.
I know this sounds like a very tall order (above) if not contradictory.
The key is to figure out how you can function for you - and to be there for her, which means knowing what / when to let go / and when to be present.
I know this is what you are asking us ... how to ... what to do?
I think we all need to find our own ways which certainly is not easy at all.
We stumble, make 'mistakes' (in our loving intentions) ... they aren't really mistakes ... most of us are on a path without any preparation, education, or knowledge of how to proceed. Coupled with that, we are EMOTIONALLY connected so it isn't 'just' academic.
* Lean on friends and support (church, networks, therapy / therapist).
* Hire an ind med social worker and see what s/he says.
* Get volunteers to visit as a way to distract. (Caregivers are wonderful, although a volunteer is different)
What I might tell her-
- The MD wants to observe her for a couple of months (not 90 days). That is mostly true.
* Expect she'll say NO and insist on going home.
* And know that its OKAY to say, I don't know now ... I don't have an answer to that ... I am working on it" ... "that's a really good question." This is being honest.
Know when you can use logic (if at all) and when you can't. Like explaining why she can't go home. It causes a 'tug of war' - I'd suggest:
Using REFLECTIVE LISTENING into your communications / conversations:
You say "I hear you want to go home ..." [then stop]
You do not argue; you do not agree or disagree.
You let her know you are listening to her.
You try to RE-DIRECT / change the subject / focus.
If I were you, I would get a book(s) (and google / You Tube) elders in memory care with OCD or words like that and see what comes up. TEEPA SNOW is also an excellent website / webinars as she is one of the country's leading experts on dementia and how to communicate with those inflicted . .
Using reflective listening, non-verbal communication, re-directing is key.
And, be kind to yourself. This is very hard with no cookie cutter answers.
No one has 'THE ANSWER' - we figure it out as we go along. And, she hurts and will continue to hurt - until she adjusts to her new environment.
If my mother, I would try to get medication to deal with the OCD.
Gena / Touch Matters
In any case, I would be honest with your mom if she is capable of understanding. Failure to do so is a betrayal of trust. If there are alternatives, provide her the options.
Clearly you didn't come from an abusive home like so many do. Also, don't compare it to caring for your own child. Children grow up and if you parented them right, become independent and make their own lives. In the case of the elderly that does not happen. It gets worse every day until at some point your whole life is consumed by their increasing neediness.
People have to work and earn. This is what the world is. If a person is not working and earning because they're at home with a needy, elderly parent 24/7 they better be rich or have a spouse who's a big earner. If they don't, the they are screwing themselves when they become seniors.
I refuse to end up in some gross Medicaid facility if I live to be elderly. I will have a luxurious old age (God willing) with my husband that our kid does not have to provide. That's why I work six days a week. That's why my husband works so much too. We will live well and still leave something behind for our son and hopefully our future grandkids.
Neither of us will allow our kid to give up his life (or expect his future wife to) to meet our old age care needs. No way. When my husband and I remarried we had legal contracts drawn up a sort of pre-nupitual agreement that neither of us would move in a parent or aging family member for the purpose of becoming caregivers. Also, that we would not relocate ourselves to do the same.
We will not be a burden on our family not will we allow anyone to be one on us.
Another aspect is that if you have billed the stay as a temporary stay, of course she is going to ask you to go home. Of course she is going to have all her things packed up. You would too, because the stay is temporary.
With dementia and staying in an institution, time is warped. Just think of yourself on a cruise...they have those rugs in the elevator that tell you what day of the week it is, for a reason....because you lose all sense of date and day. That is maybe what she is going through. I went though a little bit of confusion about dates once I retired because I did not have any "day of the week" markers so I totally get how easy it is....and I don't believe I have dementia yet...
As for being ocd, in working with a lot of retired folks, ocd seems to be the general ailment that we all have. I have my own theories as to why elders (of which I am one) are more ocd than in our younger years. On the other hand, I also wonder if it is my peer group that I hang with.
In either case, now as I'm writing this all out, I'm thinking that you may need to level with your Mom, in the way she has handled news in the past, that she is there permanently. Then I would help her make the adjustments to live there, including taking her out for car rides (put her in the back seat with the child-proof door locks). Make it look like being at the Memory Care center is a positive thing and visit her more. I suspect she is just really, really bored.
What are you doing with her home? I turned my Mom's place into a rental and told her it was to help with the costs of the MC. Whenever my Mom wanted to go back home, I told her "nope....we are making money off your home by renting it"....and that seem to make her a little more accepting of the MC.
Just some ideas. I don't know if there is a right way or a perfect solution. However, I do know, dementia or not, what the elderly people really want, especially those in managed care, is just to talk to someone, be heard....and to enjoy life. Ask your Mom, what would she enjoy doing now...and see if you can make some that happen. It is okay to say "no", however, use your creativity to see if you can make part of it happen. It is possible that all she needs and wants, is just something to look forward to.
Good luck!
While her resistance may be difficult to manage, helping her feel heard and respected during this time can make a significant difference in how she adjust to her new living situation.
she may be feeling abandoned /isolated - maybe to reassure her you have not abandoned her and visiting but it isn’t safe for her to live at home
maybe she needs more personal things around her
I would speak to a doctor and hear how they recommend to handle the transition
maybe it’s the place and another might be better suited if possible
I think a doctor should be consulted
transitions for anyone are unsettling
even a child at a new school could cry themselves silly until they settled in and made a friend
maybe that’s the key
find a friend for her there
I recall a brother going to a new school when we were younger - first day
he stayed of course but mid morning thought I’ve had enough of this and left! The school was in panic - they didn’t see him leave - alerts everywhere while one ran to our house - and it was a good run distance to find my brother had just gone home - and my mother had let him in and made him something to eat!!
then he was taken back! And asked not to do it again lol
Sometimes the transition is quick- sometimes not - he made some friends then loved school
I know this is hard. I am my mom Legal Guardian. It isn't natural for us to become the parent. Just make sure you keep telling her how much you love her and only want the best for her.
Laurie
How long have the memory care workers been there? Would they be around long enough to even know if their theory worked? I find workers come and go. The facility is being paid to take the heat.
Do what you think is best. All dementia patients are different. At different levels, different personalities etc. it is truly not a cookie cutter world as much as we try to make it that way.
I bet if you interviewed a good number of the other patients about when they are going home they will tell you soon. (No one will thank you for doing that).
We have had other posters who reported their LOs are packed and ready to go home. Some of them ARE home.
At least your mom has some busy work to keep her occupied with her packing.
It has only been 6 weeks. Hold fast to the 90 days. It isn’t uncommon to take much longer to adjust no matter what you tell them. She has had a major shock. Can you even imagine?
Everyone in that place is going home at the end of their shift.
They can suck it up and defer to you. “ Your daughter is working with the doctors. “These doctors like to be very sure their patients are well enough to go home” or “I heard your daughter say the doctor wanted at least 90 days to make sure you are on on the right med. “.
Acknowledge her concern, then distract. ‘ Let’s go join in this activity yada yada yada.”
If she is able to learn as they seem to think, then she will learn to not ask them because they always say 90 days.
I’m glad the meds are helping today. Consider doing something for your own anxiety. It’s taken me three years to accept I have no choice but for my DH aunt to be in a NH. Therapy helps. I needed it to even go visit. And Aunt told me to go live my life. She’s an easy case. Another time I saw the realization on her face when I brought her fresh laundry. I would have preferred to be told to go to hell. Look at how this country is torn apart over rights. Everyone wants their rights…even the demented. But they aren’t getting theirs either.
And speaking of, I can’t imagine a worse hell than being in one of these places but the reality is we haven’t come up with anything better. With dementia they at least have a buffer. You and I are going in cold turkey and have to take it on the chin but we are leaving w/o them and that has to be enough for today. Time will dim the memory of a previous home. You should also give yourself 90 days to adjust before you tell her anything different.
For what it’s worth, I’m not that fond of social workers either. Have one in the family and she doesn’t have a clue.
The same with many facility medical staff who have worked with NH. They breeze in and out if you can see them at all. They don’t want to “catch old or demented” it seems.
Sorry I’m so negative. There just is no “one and you’re done” for dementia. Pro or con on this topic, it will simply take time.
And to make it worse, I doubt seriously that the memory workers don’t already say whatever they choose in the moment. And then close ranks when you try to get to the bottom of almost anything. But best to kiss their behinds and carry on. Bring them something nice for Christmas, etc.
Perhaps her home gets a leak next hard freeze or whatever reasonable delay you can think of. Lots and lots of damage. Mold etc. There are many things that require upkeep on homes to be discussed. But you know your mom best. Don’t forget that. For now I would be consistent on the 90 days.
Wishing you peace.
I have to admit it was one of the hardest experiences of my life. I knew in my heart she was where she needed to be but that didn't make it any easier. My advice is to just keep telling her the doctor thinks she needs to be there, redirect conversation and smile. Over time she will adjust to the routine, start to participate in activities and hopefully be at peace. It took 9 months for mom to finally accept her living situation and that it was her only option. It was a long time of hearing complaints at every visit and it definitely took a toll on me but I knew with certainty that she is getting great care, eating regular meals, bathing 2x a week and receiving the medical attention she needed. I'm very blessed to have her in a great facility.
A book that was recommended on this site call Mother Lode by Gretchen Staebler is an excellent resource. Blessings to you and your family... try to be kind, loving and patient and know that there are many of us struggling in the same situation. You are not alone.
I spend a lot of time at his memory care, getting to know staff and residents and the routine. I have observed that most residents cope in this way. While talking with one resident yesterday, she spoke of her boyfriend and their future plans, her nursing career, the sheltie they were going to get for their new place. I made a slight misstep when asking about her past nursing career. She corrected me saying she is still a nurse. I quickly recovered saying, "of course, once a nurse, always a nurse!"
Thanks to this forum and my recent experience with MC, I remind myself often that I am in the depths of grief as is my husband. Trying to deny the reality of it is a fool's mission.
I don't have advice for you. I just offer our story so that you know you are not alone and you are doing the best you can. When I think of many people with whom I have been acquainted that walked this path alone with their person in isolation, I realize we are very fortunate to be able to have memory care as an option.
You are providing memory care for Mom out of love. You are bearing the emotional unpleasantries out of love. She is lucky to have you as a daughter. May you find peace in this.
Tell her the truth that the "tenant" you used to pay was a caregiver and you can't afford it anymore. Tell her that she can't live alone anymore and where she is now is her home now. It's good that she's a social person and takes part in the activities the memory care offers. If she's allowed to continue believing that she's only temporarily there, she won't let herself truly accept the reality that she lives there now.
Let me tell you something. I did caregiving for seniors with every kind and level dementia for 25 years. The lying is usually worse than telling them the truth.
There are harmless delusions that you can go along with. Like the one lady I worked for who believed she was secretly married to Elvis Presley. So we'd go along because it made her happy. Then there are the delusions that you never validate because that only fuels them. The ones about everyone stealing, or neighbors spying on them, or letting someone believe they're going home when they're not.
It's better to just take the reaction and vitriol they will throw at you. They may even turn on you. The anger and rage means they understand they're staying. Then they have a chance to acclimate to their permanent home and even have some quality of life there. They never do when they think they're going home.
I think you are handling it well. Your mother will eventually accept being in the Memory Care unit.
Sometimes there are no easy yes or no answers to these situations other than allowing time and acceptance to take place. It is hard for both the loved one and the family members to separate. Watching our loved ones health and minds deteriorate is difficult.
Six weeks is not a long time to adjust to the MC now being her home. I may go with the MC before a SW though. Maybe it would be better if she is told this now is her home. She probably will be mad but may adjust. When she confronts you, you say for now this is how it has to be becausevshe is not safe at home, Everyone is different. You can't lump people together.
And as you know there will come a time that she won't remember what you've told her anyway, so it may be worth a shot.
Perhaps this “would devastate her”, but only the truth is going to make things clear to her. Not understanding reality isn't doing her much good either.
She will likely continue insisting she can take of herself . Prepare to keep having the same conversation that she needs to stay for her safety .
I am in a similar situation with my uncle. He has been in a long-term care since July after 100 days of rehab that wasn't successful in him gaining mobility. Due to dementia or denial as a self preservation mode, he is incapable of realizing that he is not well needs to remain in the NH. Every time I visit he is insistently saying his is improving, walking and going to be going home in a few weeks. I have told him the truth and he gets sad, mad and then denies he is not mobile. Then the next visit he never remembers our previous conversation and the loop starts over. It is exhausting and it never changes.
There is no real transition for some. Ever.
I am afraid I am on the side of the staff. I don't believe in lies to elders and think it adds to unrealistic hope and more confusion. I can't say that telling the truth will make a difference, either. Sadly, this is the face of worsening dementia.
I wish I had better things for you. But lying to you and saying "Oh, this will be better in a month or two" just prolongs things. Doesn't it?
I wish you the best. I am so very sorry.