Widowed mom with dementia, living across the country

[Anonymous]

Anonymous wrote:

Anonymous wrote:No no no no. The only solution is institutional care, ie a nursing home or memory care unit. Look for something that has progressive care, since she'll need more supervision as time goes on. If she's indigent, then look for medicaid homes.

None of you can take adequate care of her, I hope you realize that. By the time my grandfather got lost on everything but the most familiar walks, it was time for him to go to a home - my grandmother could not care for him. She couldn't run across town looking for him, or deal with his anxiety and anger issues stemming from the dementia.

This. It gets worse and worse and with a fall, health event of family stressor the decline can be at record speed. Also, she may not like it, but her brain needs social connection with people other than family. It can be way to easy to be difficult and ornery with family. With strangers you are forced to exercise social skills and that is crucial.

Some may be offended by this comparison, but think about your toddler who didn't want to go to preschool or daycare and just wanted to be with you all day even if you had to work. Then think about how much better off your toddler was having activities and social interactions with peers while adults kept them relatively safe. Yes, they teachers missed plenty and your toddler got bonked in the head, bitten and shoved, but under your care your tot had plenty of split second accidents when you turned your head to sneeze or answer the door. Think about how much more cheerful and pleasant YOU could be for your toddler because you weren't with the tot every second. Could you have chosen to leave your tot at home with no caregiver or with a caregiver who just showed up a few hours a day and then left her to her own devices?

Some will say, no don't torture the elderly with this evil residential places, but many of us have chimed in to say our parents did better there once they adjusted and it made for much better visits where you could just savor the time and not be burned out and resentful.

I really don't think she would want that, and she would have the opportunity of in home care. For someone who is introverted and does not really like other people, in home might not be the worst I think. What I am grappling with the most is that all of this is happening so much faster than Alzheimer would be happening. I thought I would have my mom until 85 or longer (her dad died when he was 82 in the 90s). I never thought that I would lose her so much earlier than that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:No no no no. The only solution is institutional care, ie a nursing home or memory care unit. Look for something that has progressive care, since she'll need more supervision as time goes on. If she's indigent, then look for medicaid homes.

None of you can take adequate care of her, I hope you realize that. By the time my grandfather got lost on everything but the most familiar walks, it was time for him to go to a home - my grandmother could not care for him. She couldn't run across town looking for him, or deal with his anxiety and anger issues stemming from the dementia.

This. It gets worse and worse and with a fall, health event of family stressor the decline can be at record speed. Also, she may not like it, but her brain needs social connection with people other than family. It can be way to easy to be difficult and ornery with family. With strangers you are forced to exercise social skills and that is crucial.

Some may be offended by this comparison, but think about your toddler who didn't want to go to preschool or daycare and just wanted to be with you all day even if you had to work. Then think about how much better off your toddler was having activities and social interactions with peers while adults kept them relatively safe. Yes, they teachers missed plenty and your toddler got bonked in the head, bitten and shoved, but under your care your tot had plenty of split second accidents when you turned your head to sneeze or answer the door. Think about how much more cheerful and pleasant YOU could be for your toddler because you weren't with the tot every second. Could you have chosen to leave your tot at home with no caregiver or with a caregiver who just showed up a few hours a day and then left her to her own devices?

Some will say, no don't torture the elderly with this evil residential places, but many of us have chimed in to say our parents did better there once they adjusted and it made for much better visits where you could just savor the time and not be burned out and resentful.

I really don't think she would want that, and she would have the opportunity of in home care. For someone who is introverted and does not really like other people, in home might not be the worst I think. What I am grappling with the most is that all of this is happening so much faster than Alzheimer would be happening. I thought I would have my mom until 85 or longer (her dad died when he was 82 in the 90s). I never thought that I would lose her so much earlier than that.

Re: the bolded - totally understandable, but at some point there simply won't be a choice. I think best case scenario is that you keep her in-home for as long as it's feasible and then she will have to go to a memory care facility. I think the sooner you put plans in place, the better.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:No no no no. The only solution is institutional care, ie a nursing home or memory care unit. Look for something that has progressive care, since she'll need more supervision as time goes on. If she's indigent, then look for medicaid homes.

None of you can take adequate care of her, I hope you realize that. By the time my grandfather got lost on everything but the most familiar walks, it was time for him to go to a home - my grandmother could not care for him. She couldn't run across town looking for him, or deal with his anxiety and anger issues stemming from the dementia.

This. It gets worse and worse and with a fall, health event of family stressor the decline can be at record speed. Also, she may not like it, but her brain needs social connection with people other than family. It can be way to easy to be difficult and ornery with family. With strangers you are forced to exercise social skills and that is crucial.

Some may be offended by this comparison, but think about your toddler who didn't want to go to preschool or daycare and just wanted to be with you all day even if you had to work. Then think about how much better off your toddler was having activities and social interactions with peers while adults kept them relatively safe. Yes, they teachers missed plenty and your toddler got bonked in the head, bitten and shoved, but under your care your tot had plenty of split second accidents when you turned your head to sneeze or answer the door. Think about how much more cheerful and pleasant YOU could be for your toddler because you weren't with the tot every second. Could you have chosen to leave your tot at home with no caregiver or with a caregiver who just showed up a few hours a day and then left her to her own devices?

Some will say, no don't torture the elderly with this evil residential places, but many of us have chimed in to say our parents did better there once they adjusted and it made for much better visits where you could just savor the time and not be burned out and resentful.

I really don't think she would want that, and she would have the opportunity of in home care. For someone who is introverted and does not really like other people, in home might not be the worst I think. What I am grappling with the most is that all of this is happening so much faster than Alzheimer would be happening. I thought I would have my mom until 85 or longer (her dad died when he was 82 in the 90s). I never thought that I would lose her so much earlier than that.

At some point she won't have a choice, OP. Your job is to make it easier ON YOURSELF by doing your research, preparing and persuading. The worse is if you do nothing, and suddenly she needs a home and you've got nothing lined up. The short-term solution is the in-home aides, but please realize that this might not last long, so you've got to prep for the step after that.

Separately, the "she doesn't want to" line is not an excuse for you to do nothing. The elderly, by definition, "don't want to do" anything that goes out of their ordinary routine. Even those who don't have dementia. You've got to be the grownup, and push her into decisions you think will work best for her. Maybe right now it's the in-home care. But just stay aware and be ready to switch.

[Anonymous]

Anonymous wrote:OP. I am also a bit angry - she refused evaluations and doctors appointments up until now, and she still does not agree that she has an issue. The neurologists confirmed that she would be doing much better if she had sought proper care and taken medications to lower her blood pressure. I had begged her to go see a doctor since 2019. Same with my sister, who has been begging her since 2021. Now she does not have a strong resistance anymore, and I was able to take her directly to a neurologist, who confirmed everything in an MRI.

I can understand being angry. My father is an incredibly difficult dementia patient. But there isn't really much that can be done. The meds and lifestyle changes can slow things down, but dementia is a horrible and cruel disease. And honestly, the longer the person lives, the more they mar memories of who they used to be. It's just so hard.

I'd bring her near you, but put her in a facility. If you can afford in home care at your house, try it, but I doubt it'll work. Speaking from experience. My father is still aging in place and it is just a horrible situation.

[Anonymous]

You have to hire help. We moved my mil cross country to live with us and it was a nightmare. It was worse than having a newborn all over again, the adult day care was terrible and as the dementia progresses she got verbal abusive, not on purpose but she as scared and did not understand. We could not leave her home alone so we had to put her in a nursing home.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP. I am also a bit angry - she refused evaluations and doctors appointments up until now, and she still does not agree that she has an issue. The neurologists confirmed that she would be doing much better if she had sought proper care and taken medications to lower her blood pressure. I had begged her to go see a doctor since 2019. Same with my sister, who has been begging her since 2021. Now she does not have a strong resistance anymore, and I was able to take her directly to a neurologist, who confirmed everything in an MRI.

I can understand being angry. My father is an incredibly difficult dementia patient. But there isn't really much that can be done. The meds and lifestyle changes can slow things down, but dementia is a horrible and cruel disease. And honestly, the longer the person lives, the more they mar memories of who they used to be. It's just so hard.

I'd bring her near you, but put her in a facility. If you can afford in home care at your house, try it, but I doubt it'll work. Speaking from experience. My father is still aging in place and it is just a horrible situation.

In hindsight I wish we did a facility directly we we needed the long term Medicaid and finding a bed was a nightmare. It would have nomads a smoother transition. I hated having her in a facility but it was just too hard.

[Anonymous]

You said she currently visits you a few months every year. That sounds like you could move her in with you for awhile as you research and find a memory care placement nearby where you could monitor her care and visit regularly. If she doesn't have the money to pay for in home care I think this is the best option, especially since you say your sister is not being very actively supportive now.

[Anonymous]

Anonymous wrote:You said she currently visits you a few months every year. That sounds like you could move her in with you for awhile as you research and find a memory care placement nearby where you could monitor her care and visit regularly. If she doesn't have the money to pay for in home care I think this is the best option, especially since you say your sister is not being very actively supportive now.

This is exactly what my mom did with her dad (not fully by anyone’s choice, but it’s how it happened).

From that experience, OP, I can only caution you that your denial/reluctance to act will likely culminate in a situation that may force you to do things your mom would have liked even less had she been in a position to determine it for herself.

I’m so sorry; I know it’s impossibly hard.

[Anonymous]

Op, you say “I have no good solution” and that’s because there really is no good solution. All of this sucks. Your mother simply is going to have to accept care from people outside the family. That may not be what she wants, but we all live in reality where we have to accept things that are not the way we want them. When she starts receiving this care she may find that it’s not as bad as she thought. My parents actively resisted any care from non-family until they were absolutely forced by circumstances to do it. I know it’s hard. Sending you all my best wishes.

[Anonymous]

Anonymous wrote:Op, you say “I have no good solution” and that’s because there really is no good solution. All of this sucks. Your mother simply is going to have to accept care from people outside the family. That may not be what she wants, but we all live in reality where we have to accept things that are not the way we want them. When she starts receiving this care she may find that it’s not as bad as she thought. My parents actively resisted any care from non-family until they were absolutely forced by circumstances to do it. I know it’s hard. Sending you all my best wishes.

This is all very true.

When I was in the weeds of this stuff, and at the worst moments, I held on to the mantra "safety first". Nothing else mattered until safety was ensured. So staying in their house alone, or only having drop-in care, or planning to move in w/ one of us, etc... - all were easier to deal with in the context of mandatory safety.

By those measures OP, moving in with you is not the best option for your mom. You won't be able to keep eyes on her 24/7 as her memory fails, you won't be able to set up a home environment that will be physically safe for her as she declines, etc... The best thing you can do is keep her safe. And that will probably mean solutions that she dislikes, or that you feel badly about, but it really isn't as difficult a decision when safety comes first. I found it incredibly helpful - it put all the guilt/fear/grief to the side and gave me a tangible and critical issue to focus on. Knowing that I prioritized safety also gives me comfort now, with both of my parents gone. I kept them as safe as I could (and as safe as they would allow me to keep them - which is an important point) for as long as possible. That was the best I could do - truly.

These times are so hard, I'm very sorry.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I mean, she's going to have to deal with a caregiver, that's the bottom line. At a certain point it doesn't matter if she likes it, it's the only way to keep her safe.

Yes, that's probably true. But we are close, and she visits us for several months every year. She would be heartbroken if those vists with us had to stop. I would visit her for a few months per year, but realistically, the kids can only be there during the summer (which is what we do, and we take a few shorter trips from there). She would not be party of our household like she is now. I think that would make her very sad. OTOH, assuaging my guilty conscience - she never visited her dad, we spend 2 afternoons per year there and he only lived a 45 minute car ride away from us. I would have liked to have a closer relationship with him, looking back. He was a very kind and interesting person. I never got to know him really.

Not sure why you think you can’t visit if she has a caregiver.

[Anonymous]

My mom was at Asbury over 55 independent living.

We had a company called interim come n every AM and get my mom dressed and make breakfast.

We had someone take her out every day at 10am to shop or go to lunch or do dr appointments.

At 5pm she went to dinner provided by asbury.

At 7pm interim came back to give her medicine, and help her prepare for bed.

Once a week they bathed her. She went to get her hair done once a week.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I mean, she's going to have to deal with a caregiver, that's the bottom line. At a certain point it doesn't matter if she likes it, it's the only way to keep her safe.

Yes, that's probably true. But we are close, and she visits us for several months every year. She would be heartbroken if those vists with us had to stop. I would visit her for a few months per year, but realistically, the kids can only be there during the summer (which is what we do, and we take a few shorter trips from there). She would not be party of our household like she is now. I think that would make her very sad. OTOH, assuaging my guilty conscience - she never visited her dad, we spend 2 afternoons per year there and he only lived a 45 minute car ride away from us. I would have liked to have a closer relationship with him, looking back. He was a very kind and interesting person. I never got to know him really.

Not sure why you think you can’t visit if she has a caregiver.

It’s a long flight away and I could only spend a few more than there per year, at most. I could not visit for weeks or months at a time.

[Anonymous]

OP again. I am not in denial. My sister is looking at a facility near her and figuring out how to get on a waitlist. I just don’t even know whether there will be time. Every time I see her, she deteriorates. This is not like Alzheimer where people languish for years. I am so sad and heartbroken and cry several times a day. I love sweet mom so much.