My 87 year old mother has worsening Alzheimer’s , but still has a life of the mind. She is highly educated and was always unconventional. She has been living in IL in a building with AL and MC options, and we are under intense pressure from building management to place her in Memory Care. Many of her symptoms— total absence of short term memory, delusions and paranoia — would seem to demand it. I decided to gently suggest to her that more care might be needed. She was very angry and said, “So, THIS is how it is done.” She will never, ever get over being placed or forgive us for doing it. I’m sure of that.
So my question is this. Do we exhaust all her resources to place her in Memory Care in our very expensive urban area? Or do we seriously consider a move back to her home state, her own apartment, and whatever in home assistance her money might allow. And do we try to offer her that choice?
If it were me, I would rather have more independence even if I were told point-blank it might well kill me. I am thinking of laying it on the line for her in exactly those terms, because I know physical safety at all costs does not comport with her personality or values. My parents were always more Scott and Zelda than Ward and June. Spending every dime to be wrapped in bubble wrap is not what she wants, even if it might mean a few more years. Yet the management of her building is insisting on Memory Care to such a degree that the pressure is making me ill.
I wonder what you all think. I would like to offer her a choice before it is too late.
Your mother lives in an assisted living building that also has memory care available.
Who made the decision for her to be living there in the first place?
Obviously she was no longer able to live independently so moved to AL.
She has Alzheimer's dementia. That condition does not get better. It only gets worse with time. It wouldn't be a good idea to move her away from you to another state and into her own apartment. Even if you hire live-in help. No one knows how her Alzheimer's will progress or how fast. She could very well get to a point where live-in homecare won't be possible.
It's probably best to keep her in the facility she's in now and move her the memory care section of it. If the management of her building is putting pressure on you to move her into memory care, take her to the doctor first for an evaluation. See what her doctor thinks before making the move. Very often the management and administration of an AL facility that also has a memory care unit will tell a family that their person in AL has to be moved to memory care. That isn't always true. Memory Care is more expensive than AL. So a person gets moved from their AL residence to the more expensive MC area in the same facility. Then their apartment gets rented to someone else and they're bringing in double the money. Get your mom checked out by her doctor first before you decide.
If you sent her back to her home state, who is there to see about her? Even if she has relatives there, do not shift the oversight of her care from being close to you to those who are in the other state. Will never work out. If she has money and can afford round the clock care in a home, maybe an apartment in your area with that kind of care. You might even look for a private caregiving home facility where they only have a couple of people to see about. Might be comparable price to where she's living now.
You can also consider hiring these aids to work for mom at her current facility. Facility people are really saying her needs are more than our living situation takes care of and mom needs a step up into more hands-on care.
It all comes down to mom's finances.
My mother was the same way. Situation accelerated to the point she had to be moved to memory care. It has taken about seven months for her to finally accept and actually like where she is currently. They keep her busy where she is never in her room until bed time. I know because I try to call throughout the day and can't get her. When I do get her she tells me about her day and she is happy, not complaining.
Here, I don't see you have that choice - as that time has passed. Moving from one IL to a other is different. There is management & needs assessments etc. Unless you went completely independant.
Do you think she could live safely alone? If not, moving her into an unsafe situation... could you live with yourself?
A few lone elderly neighbors I wanted to tell you about.
#1, very late 90s (no dementia) lived alone. Found on floor after 1 day. Hospital, NH, made the best of it.
#2 hardly old (?70s), lived alone, didn't answer weekly call by family. Found in bed, deceased. Stroke, multi days before preventing getting out of bed or to the phone.
#3 70-80s with Alz. Wanderer. Ran onto main road at night, struck by car, hospital, NH, died of her injuries after 1 month.
I tell you these tales as even if you set up a new IL, a fall or other crises can change it all in an instant. Then hospital, MC anyway.
Sad tales?
Or success stories at living alone *for as long as possible*?
I too wonder about existing in a MC or NH for a decade vs a quicker exit.
I admire that you can discuss these things. This is how things can change for the elderly in the future.
I wish you & your Mother warm thoughts.
Have you checked out other MC facilities in the area.?
Your mother with her worsening AD really shouldn't be making these decisions - her brain is broken and my be unable to make rational decisions.
If you allow your mother to live on her own with little or no supervision, someone may report her to adult protective services and hold you as her child responsible for her unsafe condition. This happened to my cousins child and husband who were taking care of granddad (cousin's father). They were accused of starving him - it wasn't true - granddad was refusing to eat, but it was a bad time trying to defend themselves from accusations of abuse.
I do understand your mother being very angry about the possible move to MC and being a Zelda personality - while I'm not a Zelda myself, I can be a rebel not living following all the inane rules - I'm more of living to a beat of a different drummer.
While your mom doesn't want to live a live in "bubble wrap" she still needs safety. Living on her own is a disaster waiting to happen.
While memory care doesn't sound like her thing, she wouldn't be isolated from stimulation like she would be in a place of her own with a just a caregiver. Let's face it -- caregivers who are all-in on entertaining their clients and giving them mental stimulation all day while doing all the other tasks required of them are few and far between, if they exist at all.
I have a friend whose mom has Alzheimers, and her dad, a brilliant man who still works full-time at 93, hires three different college-educated people to come in to play mentally stimulating games and do puzzles with her each day. He has her daily life scheduled to the minute and I guess it's helped somewhat to keep the progression of the disease slower than it might have been otherwise, but it's a huge time commitment and expense and as she declines in other ways, full-time care is going to be required no matter what.
You need to balance what your mom wants with what she needs. Alzheimer's isn't going to be her only care need, and MC can handle all of them efficiently as the disease and her age progress. Going the other route will require a great deal of organization and supervision on your part. You need to be committed to do it.
Exhausting your mother's resources is precisely why she HAS resources: so they CAN be used for her care in exactly this situation she finds herself in.
If your mother's IL management is telling you she's in need of Memory Care, you KNOW she's not doing well b/c they are going to lose the rent she's faithfully paying each month. They're telling you the truth, I would imagine, whether or not either of you want to hear that truth.
Leaving her alone to fend for herself so she can be 'independent' is doing her a disservice, in my opinion, because as she continues to lose more and more brain power, she will not be able to make any decisions for herself. Including where to toilet, how to eat, bathe, sleep........all the basics of life will be too confusing for her to manage. Is THIS the way anyone should live in an attempt to maintain independence?
A disease should be treated accordingly, especially when it affects the brain which governs the rest of the body. AD is a very serious disease that requires care by a team of people working 24/7. My own mother lives in Memory Care Assisted Living where she's as safe as possible, fed, bathed and cared for by people who truly do care for and about her. She's entertained and kept busy, plus she gets to socialize with other elders in a group environment with 20 others. Is it ideal? No, of course not; but it's the best of a BAD situation. If she were living alone, I shudder to think of what would have happened to her by now. If she were living with me I'd have lost my mind long ago. She's not a happy person under ANY circumstances, and dementia has worsened her misery a thousand-fold. While she feels she would be 'happier' elsewhere, the truth is, she wouldn't.
Some things in life have no choice and this may be one of them. Sometimes love forces us to make an uncomfortable choice for a parent who's afflicted with AD or dementia that puts them into a safe place where they can thrive instead of a place where they think they'll be happier and better off.
Keep in mind that in MC she can not leave the building unless accompanied by family, friend or staff. In AL she can leave by herself. Is it possible that she has been trying to leave and staff, aware of her is redirecting her? Is she doing other things that may be unsafe? Is the staff in AL having to help her more taking more time that should be used to help other residents?
Bringing her home and caring for her is a full time job with no time off. It is supervision 24/7/365. It is also making sure that home is safe and accessible for her not just now but in 2 months, 6 months or a year. When you go from a walker to a wheelchair to a Hoyer Lift. When you go from being able to step over a tub to take a shower, to not being able to step over the 2 inch edge on your "walk in" shower to having to have a bed bath because you do not have a roll in shower. There is a lot to think about when caring for a loved one with dementia and all the idiosyncrasies that come with each person.
Has your mom seen a doctor about the new symptoms? That would be my 1st step. Rule out any infections or other conditions.
Then you have to take a look at reality. 2 years ago you moved her because she was not doing well living in her home state, on her own. 2 years down the road she needs more care and that is difficult for anyone to have to face.
If you and she has a hard time thinking about memory care, I was told that my dad needed memory care and I totally disagreed, I recommend that you look into board and care homes. That way, if you choose mindfully, she will never have to move again. They tend to be cheaper than a facility, with better staff to residents ratio and they are homey. She will not be locked up. She will be able to live her life without the same restraints as a MC. She will get all of her needs met and you can add enrichment activities for her.
I have had multiple family members succumb to this brutal disease and having to place them in a facility for their own safety is the hardest thing that I have ever had to do. I know that it was the only alternative in every single case and each loved one actually did better because of the care they received.
Don't let her passive aggressive comments and snark cause you to make dangerous choices for her. She doesn't have the capacity to decide for herself and she needs you to decide based on safety and wellbeing, not emotions. She will eventually adjust and get over being mad, especially if you take the time to find a facility that meets all of her needs as well as possible.
My dad loved young people and sitting outdoors, so I found a facility that had a patio off his room and was ran by young people. It was the best fit for him.
One thing that I want to stress. No option is going to be perfect, there will always be issues and problems, we are all human after all and we all make mistakes. So keep in mind that no matter what you do, it will be hard for everyone involved. So you try to check as many boxes as possible and learn to pick your battles and you learn to disengage when things are heading down a circular path. You can't fix her but, you can provide her with the best solution available and her living alone is not even on that list as things stand now.
You will get through this and you will make the right, albeit tough, decisions about her care. Please do not let a demented mind run the show, it will not work. You are now the "mom" and you have to make those decisions based on keeping her and others safe.
You can do it!
Great big warm hug!
I think it is hard for us with highly educated, formerly independent LOs rro watch the deterioration of their thought processes. My husband was one of the best Criminal Investigators; his investigations led to significant case law, yet he can't get his shoes on the correct feet. You have to accept the facts in front of you. Your mom needs more help to live her life. Be prepared for her to be very angry; but the anger won't last forever; her broken brain will take care of that. Hugs to you - I know your heart hurts
"She was very angry"
Is going against her wishes really it..?
"exhaust all her resources"
Is this the worry, what would happen once funds are gone?
"If it were me, I would rather have more independence even if I were told point-blank it might well kill me".
I don't see this as a moral decision at all, unless you're going to be saddled with guilt whatever you decide for her. In my opinion, I don't see how you could possibly consider moving your mom to an apartment and have her live a “normal” life. Exactly how do you pull off a long distance move to a new and strange location (home state means nothing, it is still a different location) with someone who experiences delusions, paranoia and hallucinations? So your placing her wants for independence over her need for better care? That's the consequences of having Alzheimer's, you not only loose your independence, but you loose the faculties to make safe and appropriate decisions on your own behalf.
So by considering a stand alone apt for your mom you're OK with her occasionally leaving all the stove burners on all night, her seeing strange men in her apt or bugs on the wall, her overdosing on meds she is taking or not taking them at all, her leaving her apt at 2 AM and wandering around outside, her …..? And what makes you think the apt management would tolerate her psychotic behavior?
Being wrapped in a bubble wrap is not what she wants, you say. With her worsening Alzheimer's, it's no longer what she wants, it's what she NEEDS. And what do you mean by saying the “total absence of short term memory, delusions and paranoia — would seem to demand it.”? SEEM to demand it!!! What other symptoms are you waiting for?
Just my thoughts... you decide.
How far away is her home state? You will be very busy being her care manager, and expect to have to make many trips there to take of emergencies if you move her back to her home state. Are you really willing to do all of that?
You can't offer your mother a choice as such, at this point, while her functioning is so impaired. Assuming it is permanent and can't be improved, you must make the decisions on her behalf.
This is where an advance directive is so helpful! - but that's just saying "I wouldn't start from here" so let's skip over that.
So, next you consider, in order:
Her best interests
Her known wishes expressed when she was well
Her habits and priorities
Your best judgement of what she herself would decide were she still capable of making the decision.
I have no idea if that helps with your current options, but one thing does strike me - she seems to have a very negative perception of the memory care unit in her facility. What has she seen or might she have heard about it? Because, just saying, there are others, after all.
If you want your Mother to make a rational decision, based on being able to understand the question, weigh up her actions, & the consequences, I think you would need to go back in time. Brain changes are that. Changes to reasoning, processing & judgement.
Of course I do not know what stage Dementia or Alz she has.
Why does her current IL say she requires a different setting? Is she able to eat, dress, bathe with minimal prompting? Is she wandering? Is she falling or unsafe in other ways?
I don't see it so much as the usual Duty of Care VS Dignity of Risk (ie Safety VS Freedom) as you already know she needs a supervised environment.
So it seems you are weighing up supervised living in a MC facility VS supervised living in a 'do it yourself' version.
A facility set up for this, with staff on shifts, laundry done, medication managed, meals provided (modified diets, soft etc), visiting health professionals I presume? Physio, Doctor, Dentist, Podiatrist plus hairdresser. Activities & social contact provided.
VS
An IL apartment where YOU become Care Manager, booking Aides, ensuring all shifts are covered, arranging medications, continence products, meals delivered or cooked on site, laundry, transport to all medical appointments, hairdresser etc, transport & Aide for outings or daycare.
So in MC, she would need to fit in with the group & you say she's not that sort of person. More safety but less freedom.
But IL would give her the chance to still Rule the Roost, so to speak? More freedom? Maybe just as safe (although a massive job for you..).
Is THAT what you are grappling with? That as this insidious disease takes over, she will lose her freedom? Lose control of her life choices? Will living in an IL apartment fix that? Or just cause daily arguments with Aides?