How can I go about this gently for my mom? How do you relocate a parent with Alzheimer’s that is still holding on to their independence? This is so challenging and sad to see my mom like this. Please advise.
I take care of my husband. He has dementia. I've done caregiving for both parents who had dementia and another relative as well.
Others have pointed out that it's not an easy road to take someone with dementia into your home.
I can be more specific. What to expect:
Getting them dressed in the morning can take from 20 minutes to an hour and a half or even more depending on how cooperative they are. Sometimes they flatly refuse. It's no use to tell mom to lift her foot so you can pull on her sock if she no longer can associate that thing at the end of her leg with the word "foot." Or associate the floppy striped thing with the word "sock." Undressing is equally frustrating since they might not know why they're expected to take off their clothes.
Showering them can be a debilitating chore for the caregiver. Some patients will not. Some are scared by the water. They might not know the word "shower" anymore, then you show them the shower, then they still refuse to get in. With my husband, he forgot the steps of showering himself. He had no idea how to go about getting clean and just stopped showering altogether. When I shower him, every single thing must be explained. "Now I'm going to spray water on your legs." "Now I'm going to put soap on the brush." "Now I'm going to blah blah blah." Each time it is as if it's the first time he ever did it because he can retain no memory of anything about it. The whole experience upsets him. He can't cut his food now so I do it. My mother got to where she couldn't swallow solids and existed mostly on Boost.
I've found good silverware in the kitchen garbage as well as the kitchen sponges and dishwashing brush. Today I wheeled the trash cart to the curb NINE times and DH wheeled it back up to the garage. He didn't know why it was out there. He can't be unsupervised, so I was watching him puttering in the yard through the big window when he went out to get the cart, and I went out to wheel it back to the curb every time. I was outside with him much of the time, too, and he'd still do it. I explained over and over that the truck was coming soon, but he had no comprehension and he'd wheel it back up to the house again immediately. A couple of times he pulled some of the garbage out and took it into the house. I find used toilet paper in odd places. He's peed on the carpet. He didn't know why the carpet was wet and didn't remember he did it. He thinks there's another person around the house, and maybe that person is the culprit. But he doesn't seem to think there's anything wrong with peeing on the carpet in the first place. My dad had to be stopped from heading to work at 2 a.m., car keys in hand though he hadn't driven in ages. My mother had hallucinations that scared her. There was an animal in the fake plant in her room. She could see it. We couldn't. She was afraid of the man who came to fix the washer and any stranger in her home. Both she and my dad cried out pitifully that they wanted to die. It was terrible to hear.
This is life with a person with dementia. All day every day living with this sort of thing is difficult for family caregivers. My advice is that you don't take her into your home but find placement for her right now, while you have the chance. Once you get her into your house, it will be hard to get her out. Besides, she'd be better off with the socialization and activities at a facility, and you'll retain your sanity.
"Oh, but I love her so much and I don't want to put her in a 'home!'" It's amazing how many people change their mind after they've tried it.
As other posts have mentioned, moving her in with you will be hard on you. Do you know if she sleeps at night? Is she up all night lost and wandering? What if she leaves the stove on and starts a fire. You will be on call 24/7. You will be handling her medication. I never gave my sister with dementia a choice to live with me. She went to assisted living and then memory care because she doesn't sleep and wants to "go". even though she has no idea where. Research your options. My sister doesn't want to be in memory care, but she likes the staff and is safe there.
Is there a formal Alz diagnosis? Already a POA? Sorry if already mentioned.
Littleflower, do you need help with how to LEGALLY move your Mother? Either in with you or into a more supervised home ie AL.
Or are you seeking advice regarding the MORAL angle? How to override what Mom wants with what you are seeing she needs?
Many have the desire to care for their parent themselves. They co-habitate. Either move them into their home after a health crises or if the elder is unwilling to relocate, move themself into the elder's home.
Then they set about providing all the care with their best intentions.
But often their expectations do not match the reality. The elder is not thankful. May even be hostile. Does not understand. No matter what is explained, due to dementia brain changes they just CANNOT understand why their daughter or son is there, holding them prisioner.
Dementia can be heartbreaking in many ways for family & caregivers.
Do you have POA? If you do not it is too late to get it because this requires competency. You will likely need to see an attorney for guardianship. Then, with diagnosis in hand, you will let your mother know that you understand her choice, but that she honestly has no choice now, and that you have to make the best decision for her safety that you can make. Tell her you want to include her if she is willing to work with you, but that if she is not you will have to do this for her safety on your own.
This of course requires a clear diagnosis of Alzheimer's severe enough that mom is not safe on her own and incapable of making her own decisions.
I keep sending folks to attorneys offices today. I think I should get a cut! I understand it is so expensive but because things weren't in place when she was well this is the only choice left. I surely do wish you the best. I have purposely not here gone into your decision to do 24/7 care, and I must assume you have thought of what this means for your own life, and that your caretaking will only become more and more difficult with time.
The thing about Alzheimers is The person Can Live another 10 - 20 Years so That is a Big Portion of your Life you are giving up for Your Mom . It is very challenging to Observe and if you dont Have a support system even Harder . It is a slow decline - The Person begins to shuffle when they walk , They become Paranoid and May Hallucinate or hear voices , They will hide things and expect you to find them , The toilet May become messy or they have an accident , Temper tantrum's , manic behavior , Obsessive compulsive behavior . You will have to cook for them and clean constantly . Then the Falls begin and you have to Pick them up or they can't shower and you have to Hire a CNA to shower them. They May have Mini strokes and falls and end up In the ER or Intensive care Unit . You are constantly On call 24/ 7 there are no breaks to catch your breath . No One will really care either . You will feel alone and Isolated . Just preparing you for the reality . I Keep seeing the same Patterns of decline . They won't be able to drive or Make decisions . Basically You have a child so you become the parent . No Love Life , no career , No time for a vacation . You are taking care of a seriously Ill person .
It's sad that your mother is so young (68) to have Alzheimer's disease. It happens to more and more younger people these days.
Does she have an actual diagnosis of it? If not then she needs to get some testing done.
It's understandable that you want to relocate her closer to you if she has dementia. Don't move her in with you though. That should not even be considered if she has Alzheimer's. An AL in your area depending on how advanced her condition is would probably be your best bet.
I did homecare for 25 years and can speak from experience in saying moving a person with Alzheimer's or any dementia into your home is not a good idea. What usually ends up happening if the person doesn't die is the family caregiver who took them in (most of the time the rest of the family does not help with the care) is worn down so badly and exhausted from caregiving that the person ends up getting placed in a care facility anyway.
I think it's better to get a person placed while they still have enough mental faculties left to be able to acclimate to it and even make friends and enjoy the socialization part of it. When a family takes the person into their home then waits until the dementia becomes advanced before placing them, they usually don't acclimate to a new environment. So they spend their days in an endless cycle of begging and demanding to go home. Or calling making hysterical phone calls to their family members over some "emergency" or crisis they fabricate in their own minds.
It would be your best bet to get in touch with her POA and have a serious talk about finding appropriate placement for her now. Or get APS involved because your mother will need a POA or conservator making her decisions.
There is no gentle or easy way to take a person out of their home and place them somewhere else. It's better to just do it. Be prepared for the very hard feelings, resentment, anger, and hysterics from your mother. Most people don't go willingly into care. Have a support system in place for yourself when this behavior starts up because you will need one. Good luck.
It's true that unless you are her PoA you won't be able to get a resistant adult to do anything against their will. If you are unable to convince her to assign a PoA, then the only option left is guardianship by you or a 3rd party guardian assigned by a judge (this would have come through APS/social services).
Do you have any contact or relationship with her neighbors or friends? Is there anyone local to her that you can work with to keep tabs on her or be boots on the ground in a more urgent situation? I did this with my MIL's very sweet and willing neighbor and it was so helpful.
An alternative strategy is to invite her to have a vacation at your home, and keep extending it. But then you'll have to deal with her prior residence and if you don't have legal authority to do so and she's against selling it... it's a problem.
It's also true that probably the majority of participants on this forum will warn against romanticizing living with a parent in decline -- especially if you are married and have kids in the home. There are costs to this arrangement: privacy, marital, emotional, mental, physical and financial. Your Mom is very young and so her journey may last a years, with both cognitive and physical decline happening every month. Please go into this with your eyes wide open and if you have a spouse... they need to be fully on board. Just be open to other care solutions.
I wish you success in helping your Mom get the best care possible!
If you are not your moms DPOA or medical POA, then you really have NO say in the matter. And your mom is very young at 68, so of course she doesn't want to give up her independence. No one at any age really wants to. I would also say...be careful what you wish for. Moving your mom in with you may sound good on paper, but realistically it can be a living nightmare, especially as her dementia progresses. Whoever is moms POA, should instead be looking into having her placed in an assisted living facility where she will be around other folks her age and that has a memory care unit attached for when the time comes(and it will)that her dementia gets worse. It sounds like you are pretty much a control freak like me, however your moms dementia is one thing you will not be able to control or fix. Best wishes as you take this heartbreaking journey with your mom.
OP, your profile says that your mother is 68 and is ‘living in Independent Living’. Does she have a formal diagnosis of AZ, and how far along is she? What services are provided at her IL place? Can the services be increased so that she can cope for now?
Your profile says about yourself “I am the leader of my family and take initiative. I solve problems and care so much etc…”.
Very few people on the site would suggest that it’s a good idea to have her live with you, which could easily be for two or more decades. You say that “she doesn’t want to move”, which sounds fairly reasonable at age 68, and clearly we know neither you nor your mother. It would be good to have at least a second opinion about whether M really needs you to ‘take initiative’ to this extent at this stage in her life.
She can’t live alone if she has been dx with Alzheimer’s. You don’t have to do this gently. You have to do it though. It doesn’t matter what she thinks about it.
It’s up to you now to make the safe choice for her.
Why do you want her to live with you? How many years would you give care for? What is your exit plan for when it gets bad and she is peeing and pooing all over your furniture and your house?
Who else lives with you currently? What are their thoughts about this?
Others have pointed out that it's not an easy road to take someone with dementia into your home.
I can be more specific. What to expect:
Getting them dressed in the morning can take from 20 minutes to an hour and a half or even more depending on how cooperative they are. Sometimes they flatly refuse. It's no use to tell mom to lift her foot so you can pull on her sock if she no longer can associate that thing at the end of her leg with the word "foot." Or associate the floppy striped thing with the word "sock." Undressing is equally frustrating since they might not know why they're expected to take off their clothes.
Showering them can be a debilitating chore for the caregiver. Some patients will not. Some are scared by the water. They might not know the word "shower" anymore, then you show them the shower, then they still refuse to get in. With my husband, he forgot the steps of showering himself. He had no idea how to go about getting clean and just stopped showering altogether. When I shower him, every single thing must be explained. "Now I'm going to spray water on your legs." "Now I'm going to put soap on the brush." "Now I'm going to blah blah blah." Each time it is as if it's the first time he ever did it because he can retain no memory of anything about it. The whole experience upsets him. He can't cut his food now so I do it. My mother got to where she couldn't swallow solids and existed mostly on Boost.
I've found good silverware in the kitchen garbage as well as the kitchen sponges and dishwashing brush. Today I wheeled the trash cart to the curb NINE times and DH wheeled it back up to the garage. He didn't know why it was out there. He can't be unsupervised, so I was watching him puttering in the yard through the big window when he went out to get the cart, and I went out to wheel it back to the curb every time. I was outside with him much of the time, too, and he'd still do it. I explained over and over that the truck was coming soon, but he had no comprehension and he'd wheel it back up to the house again immediately. A couple of times he pulled some of the garbage out and took it into the house. I find used toilet paper in odd places. He's peed on the carpet. He didn't know why the carpet was wet and didn't remember he did it. He thinks there's another person around the house, and maybe that person is the culprit. But he doesn't seem to think there's anything wrong with peeing on the carpet in the first place. My dad had to be stopped from heading to work at 2 a.m., car keys in hand though he hadn't driven in ages. My mother had hallucinations that scared her. There was an animal in the fake plant in her room. She could see it. We couldn't. She was afraid of the man who came to fix the washer and any stranger in her home. Both she and my dad cried out pitifully that they wanted to die. It was terrible to hear.
This is life with a person with dementia. All day every day living with this sort of thing is difficult for family caregivers. My advice is that you don't take her into your home but find placement for her right now, while you have the chance. Once you get her into your house, it will be hard to get her out. Besides, she'd be better off with the socialization and activities at a facility, and you'll retain your sanity.
"Oh, but I love her so much and I don't want to put her in a 'home!'"
It's amazing how many people change their mind after they've tried it.
You’ll get the same result a lot sooner!
Littleflower, do you need help with how to LEGALLY move your Mother? Either in with you or into a more supervised home ie AL.
Or are you seeking advice regarding the MORAL angle? How to override what Mom wants with what you are seeing she needs?
Many have the desire to care for their parent themselves. They co-habitate. Either move them into their home after a health crises or if the elder is unwilling to relocate, move themself into the elder's home.
Then they set about providing all the care with their best intentions.
But often their expectations do not match the reality. The elder is not thankful. May even be hostile. Does not understand. No matter what is explained, due to dementia brain changes they just CANNOT understand why their daughter or son is there, holding them prisioner.
Dementia can be heartbreaking in many ways for family & caregivers.
Please consider the options most carefully.
If you do not it is too late to get it because this requires competency.
You will likely need to see an attorney for guardianship.
Then, with diagnosis in hand, you will let your mother know that you understand her choice, but that she honestly has no choice now, and that you have to make the best decision for her safety that you can make. Tell her you want to include her if she is willing to work with you, but that if she is not you will have to do this for her safety on your own.
This of course requires a clear diagnosis of Alzheimer's severe enough that mom is not safe on her own and incapable of making her own decisions.
I keep sending folks to attorneys offices today. I think I should get a cut! I understand it is so expensive but because things weren't in place when she was well this is the only choice left.
I surely do wish you the best. I have purposely not here gone into your decision to do 24/7 care, and I must assume you have thought of what this means for your own life, and that your caretaking will only become more and more difficult with time.
I hope someone has her DPOA.
The very worst thing you can do for both her and you is to have live with you. This is not sustainable.
Read around this site, it is very clear that this proposed option does not work.
Does she have an actual diagnosis of it? If not then she needs to get some testing done.
It's understandable that you want to relocate her closer to you if she has dementia. Don't move her in with you though. That should not even be considered if she has Alzheimer's. An AL in your area depending on how advanced her condition is would probably be your best bet.
I did homecare for 25 years and can speak from experience in saying moving a person with Alzheimer's or any dementia into your home is not a good idea. What usually ends up happening if the person doesn't die is the family caregiver who took them in (most of the time the rest of the family does not help with the care) is worn down so badly and exhausted from caregiving that the person ends up getting placed in a care facility anyway.
I think it's better to get a person placed while they still have enough mental faculties left to be able to acclimate to it and even make friends and enjoy the socialization part of it. When a family takes the person into their home then waits until the dementia becomes advanced before placing them, they usually don't acclimate to a new environment. So they spend their days in an endless cycle of begging and demanding to go home. Or calling making hysterical phone calls to their family members over some "emergency" or crisis they fabricate in their own minds.
It would be your best bet to get in touch with her POA and have a serious talk about finding appropriate placement for her now. Or get APS involved because your mother will need a POA or conservator making her decisions.
There is no gentle or easy way to take a person out of their home and place them somewhere else. It's better to just do it. Be prepared for the very hard feelings, resentment, anger, and hysterics from your mother. Most people don't go willingly into care. Have a support system in place for yourself when this behavior starts up because you will need one. Good luck.
Do you have any contact or relationship with her neighbors or friends? Is there anyone local to her that you can work with to keep tabs on her or be boots on the ground in a more urgent situation? I did this with my MIL's very sweet and willing neighbor and it was so helpful.
An alternative strategy is to invite her to have a vacation at your home, and keep extending it. But then you'll have to deal with her prior residence and if you don't have legal authority to do so and she's against selling it... it's a problem.
It's also true that probably the majority of participants on this forum will warn against romanticizing living with a parent in decline -- especially if you are married and have kids in the home. There are costs to this arrangement: privacy, marital, emotional, mental, physical and financial. Your Mom is very young and so her journey may last a years, with both cognitive and physical decline happening every month. Please go into this with your eyes wide open and if you have a spouse... they need to be fully on board. Just be open to other care solutions.
I wish you success in helping your Mom get the best care possible!
And your mom is very young at 68, so of course she doesn't want to give up her independence. No one at any age really wants to.
I would also say...be careful what you wish for. Moving your mom in with you may sound good on paper, but realistically it can be a living nightmare, especially as her dementia progresses.
Whoever is moms POA, should instead be looking into having her placed in an assisted living facility where she will be around other folks her age and that has a memory care unit attached for when the time comes(and it will)that her dementia gets worse.
It sounds like you are pretty much a control freak like me, however your moms dementia is one thing you will not be able to control or fix.
Best wishes as you take this heartbreaking journey with your mom.
When someone we love is in need, it's a natural caring instinct to want to wrap them up & bring them home ❤️
Keep your loving heart but also keep your head. Less red hat & more white hat before you decide the best pathway forward.
(Red Hat: feelings, reactions, vibes.
White Hat: data, facts, information
Blue Hat: manages)
Your profile says about yourself “I am the leader of my family and take initiative. I solve problems and care so much etc…”.
Very few people on the site would suggest that it’s a good idea to have her live with you, which could easily be for two or more decades. You say that “she doesn’t want to move”, which sounds fairly reasonable at age 68, and clearly we know neither you nor your mother. It would be good to have at least a second opinion about whether M really needs you to ‘take initiative’ to this extent at this stage in her life.
It’s up to you now to make the safe choice for her.
Why do you want her to live with you? How many years would you give care for? What is your exit plan for when it gets bad and she is peeing and pooing all over your furniture and your house?
Who else lives with you currently? What are their thoughts about this?
If mom is stage four, she can’t live alone. It doesn’t matter how young she is.
I also assume mom has been formally diagnosed