Advice needed---- elderly parents, one with dementia...baby of the family, siblings issues

[Anonymous]

There is so much knowledge on here to glean I'm sure but here are the facts of the matter:

Highly functioning father *86yo* primary care giver of my mother *86yo* dementia ... which seems stable and not functioning downward hardly at all over last 5 years, diagnosed 7 years ago.

I have two older siblings. Sister advocates my Mom be put in Memory Care. Occasionally comes to visit my parents, two times a month. Brother does not seem interested in helping , maintains cordial but distant relationship with parents. Sees them once a year, lives 2 hours away married but no kids. I have fraught relationship with both siblings.

I am baby of the family by 10 years. Lives in same area as parents , see them almost daily.


Obviously my relationship with my parents, and the experience I had growing up differed greatly to that of my two older siblings ... who likely see me as "spoiled " and perhaps with more of a codependent relationship with my parents , so whether fair or not, my older siblings have sort of said in so many words "they are your problem". (I have inferred this attitude because of their growing distance to my parents as well as to me over the last 10 years or so.)

Questions off the top of my head:


1. Do I try to do what's best for my parents regardless of what kind of role my siblings should have at this stage ?
2. How do I help my parents when I don't have my own shit together to the degree I should have at this stage in life ???? (Besides getting there as quick as I can.)
3. And I don't want this to be all about me, but how can I be there for my parents and be the best advocate I can be for them when my own position within my nuclear family, and just life at large, is the weakest link?

Okay so maybe I need a psychiatrist more than anything lol. Thanks for reading. And thank you thank you for anything you can think of. I know I will probably get a lot of "tough love" and "grow the f up" type comments but I do understand it's not a good predicament I am in and I am plenty hard on myself and feel real shitty as is because I should be more or a responsible adult than I actually am. Thank you thank you for any hints or heuristics you may have for someone at this juncture. 🙏

[Anonymous]

Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

[Anonymous]

Anonymous wrote:Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

Thank you for that , my thoughts exactly, and my father's thoughts as well. I think my sister is thinking of my Dad, and wanting things to be easier for him since he's in such great health, mind, and spirit currently (which I can understand) but I cannot see my father doing that to my Mom while they are maintaining well in the house they have lived in for 50 years. Ya know?

[Anonymous]

OP, every decision does not need to be maximized, or criticized about the precise timing. A few months or a year moved to Memory Care is not an unreasonable outcome. A reasonable person might decide that Memory Care is a reasonable place for Mom. So, stop with hyped-up sense of doom and stress re: the precise right decision as the precise right time, and don't fault your siblings for their view. Drop the narrative that is because of sibling drama/you're the youngest/blah blah blah.

If your Siblings have truly anointed you in charge, step-up and be in charge. You've probably read here: you need to be on their checking account. You need to know all their finances.
The person who takes responsibility makes the decisions.

[Anonymous]

It's impressive that your mom isn't declining. How is your father coping? Is he overwhelmed by her care? Are there aides?

For the record....Memory care is only like a prison for those who wander and have other needs where they need it to be that intense. There are different levels. Plus, many places have both AL and Memory care so she might qualify for AL and then if she needs more intensive care she moves to MC. When someone with dementia is that unsafe aging at home becomes a prison too. You get special locks for everything and they have to be closely monitored.

You have to look at your father's needs too. If he truly is fine, that is great and he may be happier having her close. If he starts getting burned out it can take a toll on his health and make him decline faster so keep an eye on things.

You can hire an aging professional to periodically assess level of need. You can then have that person take the lead in a family meeting. If someone chooses not to be part of family meeting, let it go. Just give the siblings a chance, but let them be who they are.

What's "best" for your parents is so hard to quantify. Some parents insist when cognitively fine they want to age at home. Is it safe to have winding steps and a lot of things can not be altered for aging? No, but sometimes you just have to accept their best is not your best. My mom chose a best that has her rotting in front of the TV. Breaks my heart when she is a social person and she is declining so fast, but she chose this best when cognitively fine and refuses other suggestions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

Thank you for that , my thoughts exactly, and my father's thoughts as well. I think my sister is thinking of my Dad, and wanting things to be easier for him since he's in such great health, mind, and spirit currently (which I can understand) but I cannot see my father doing that to my Mom while they are maintaining well in the house they have lived in for 50 years. Ya know?

My mom refused memory care for dad because she had a very antiquated idea of what it was like. She became so burned out she became abusive toward him and her own cognitive, mental and physical health declined. We finally got him into Memory care when she was hospitalized and he adjusted better than anyone could have expected and seemed to age backwards for a while. He has since passed, but I can honestly say he was happier and safer there. Visit Memory Cares and keep an open mind. Two of my friends had similar experiences with their parents.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

Thank you for that , my thoughts exactly, and my father's thoughts as well. I think my sister is thinking of my Dad, and wanting things to be easier for him since he's in such great health, mind, and spirit currently (which I can understand) but I cannot see my father doing that to my Mom while they are maintaining well in the house they have lived in for 50 years. Ya know?

Yeah, memory care is not better for the person who is impaired. But it might be better for the family members caring for the patient. Depends really on what your dad wants and how burned out he is.

Do you - or you and your your siblings - health care power of attorney, hipaa access, and financial power of attorney for your parents? You need to get that in place if not.

Also, my mom has dementia and remeron and aricept help her. It’s person by person though because I think remeron can also make people really sleepy. She gets more depressed when she is not on them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

Thank you for that , my thoughts exactly, and my father's thoughts as well. I think my sister is thinking of my Dad, and wanting things to be easier for him since he's in such great health, mind, and spirit currently (which I can understand) but I cannot see my father doing that to my Mom while they are maintaining well in the house they have lived in for 50 years. Ya know?

My mom refused memory care for dad because she had a very antiquated idea of what it was like. She became so burned out she became abusive toward him and her own cognitive, mental and physical health declined. We finally got him into Memory care when she was hospitalized and he adjusted better than anyone could have expected and seemed to age backwards for a while. He has since passed, but I can honestly say he was happier and safer there. Visit Memory Cares and keep an open mind. Two of my friends had similar experiences with their parents.

I forgot to add that mom got to this level of burnout despite him going to a day program and having hired caregivers at home when he was not at the day program. So she had plenty of time where she could do her own thing. She missed the privacy in her own home and could not accept how much he had changed. He could sense she didn't like any of this and it was not good for him either.

[Anonymous]

OP If your parents have a few bucks, consider hiring a care manager to help your parents and you navigate their situation.

[Anonymous]

Is your mom able to be safely home alone while your dad manages his own appointments, activities, etc.? Your dad is 86 and it’s wonderful that he’s in such good health but ultimately, he could have a health crisis that will make it difficult or impossible for him to continue to manage her care at home - so even if the plan is to age in place, I think it’s wise to at least investigate facilities in your area, and learn about their availability and what would be involved in securing a spot.

Also - are you sure there has been zero decline over the last seven years? Is it possible your dad has been in denial, or covering for her? How dependent is your mom? In what ways does she need assistance?

I disagree that memory care facilities are a prison. That kind of thinking keeps people mired in guilt and trapped in unsustainable situations. If your dad’s health begins to suffer, or they are one health ailment away from a crisis, or your mom begins to wander, etc. - then memory care is a viable option, and there are a lot of nice facilities (although you don’t mention their financial situation).

Somebody needs to be appointed financial POA/health care surrogate, in case your parents become unable to make health care decisions for themselves. But again, if something were to happen to your dad, what is the back-up plan? All of that needs to be considered.

[Anonymous]

Anonymous wrote:Is your mom able to be safely home alone while your dad manages his own appointments, activities, etc.? Your dad is 86 and it’s wonderful that he’s in such good health but ultimately, he could have a health crisis that will make it difficult or impossible for him to continue to manage her care at home - so even if the plan is to age in place, I think it’s wise to at least investigate facilities in your area, and learn about their availability and what would be involved in securing a spot.

Also - are you sure there has been zero decline over the last seven years? Is it possible your dad has been in denial, or covering for her? How dependent is your mom? In what ways does she need assistance?

I disagree that memory care facilities are a prison. That kind of thinking keeps people mired in guilt and trapped in unsustainable situations. If your dad’s health begins to suffer, or they are one health ailment away from a crisis, or your mom begins to wander, etc. - then memory care is a viable option, and there are a lot of nice facilities (although you don’t mention their financial situation).

Somebody needs to be appointed financial POA/health care surrogate, in case your parents become unable to make health care decisions for themselves. But again, if something were to happen to your dad, what is the back-up plan? All of that needs to be considered.

+1,000,000 This is all well said. Please be proactive. In my family my siblings just considered me the back up plan and refused to discuss proactive measures. When the Sh$t hit the fan, I had my own family crises and it never occurred them them I might not be available for every single emergency.

Also, I have never heard of someone with dementia going years without decline. What exactly is your mom's current level of functioning?

[Anonymous]

OP - It would be good to know if your Dad, while he is fully competent has made legal decisions which will spell out who will be POA and Health Care Power for your mom and for him. Rules change and so has he had his will and any trust situation updated recognizing the fact that assets might well need to be protected, especially as it is likely that your mom night need memory or skilled nursing at some point well before his care needs might kick in. Equally important is to see if your dad has made appropriate financial decisions and do all three siblings understand his basis wishes.

For the here and now, I would encourage your dad to work with an agency unless he has private contacts to find a suitable companion for your mom a couple of days a week so that he can pursue interests of his own - playing golf, seeing buddies regularly for coffee or lunch, joinging a service group, joining a community center with swimming or fitness options, joining a senior center with programming he enjoys. My parents made it to 96 and 99 with my dad the latter having full faculties and driving very locally till 97. They moved into Indepedennt Living in a CCRC with AL and in time Memory Care was added in early 90s when my Mom's dementia and physical condition warranted a one-floor home. They had the funds to do so, and I do credit my dad with appropriate planning including turning over financial investments to a group at a certain point in time. There was a period where both were able to be served in the CCRC. One issue that I would make sure the administrative staff at the CCRC knew clearly knows a family's decision on is that if the spouses are living in separate units, that a family member should be informed first of the sudden death of one first AND not just the remaining spouse. My mom had a sudden heart attack and the staff went to call my dad (who by then was around 95) when they knew brothers lived within 10 minutes. Due to him not hearing the phone, a staff person went to tell him in person. But still a better way could be decided upon in advance.

OP the final thing to remember is that health status of either could change very quickly so it is also advisable for you and your siblings who might be interested to do some local research on services in your area and share them with your dad to even get his general opinion. Some programs may have waiting lists that one might consider getting on as a backup option. As things trend down with your mom, one might also talk to area agencies ahead of time and research their reputations and costs structures for care. If you know you could benefit from some professional support, it would be a very wise step for your own health to get it in place. Also, do not feel that what happens with your parents needs to be solely on you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Memory ward is like a prison. Don’t put your mom there unless it’s becoming impossible to keep her at home

Thank you for that , my thoughts exactly, and my father's thoughts as well. I think my sister is thinking of my Dad, and wanting things to be easier for him since he's in such great health, mind, and spirit currently (which I can understand) but I cannot see my father doing that to my Mom while they are maintaining well in the house they have lived in for 50 years. Ya know?

NP here
It's all well and good you feel that way, I guess. Just realize you have NO RIGHT to insist or even ask your siblings to "do more" if this is the road you and your dad choose to take.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is your mom able to be safely home alone while your dad manages his own appointments, activities, etc.? Your dad is 86 and it’s wonderful that he’s in such good health but ultimately, he could have a health crisis that will make it difficult or impossible for him to continue to manage her care at home - so even if the plan is to age in place, I think it’s wise to at least investigate facilities in your area, and learn about their availability and what would be involved in securing a spot.

Also - are you sure there has been zero decline over the last seven years? Is it possible your dad has been in denial, or covering for her? How dependent is your mom? In what ways does she need assistance?

I disagree that memory care facilities are a prison. That kind of thinking keeps people mired in guilt and trapped in unsustainable situations. If your dad’s health begins to suffer, or they are one health ailment away from a crisis, or your mom begins to wander, etc. - then memory care is a viable option, and there are a lot of nice facilities (although you don’t mention their financial situation).

Somebody needs to be appointed financial POA/health care surrogate, in case your parents become unable to make health care decisions for themselves. But again, if something were to happen to your dad, what is the back-up plan? All of that needs to be considered.

+1,000,000 This is all well said. Please be proactive. In my family my siblings just considered me the back up plan and refused to discuss proactive measures. When the Sh$t hit the fan, I had my own family crises and it never occurred them them I might not be available for every single emergency.

Also, I have never heard of someone with dementia going years without decline. What exactly is your mom's current level of functioning?

I'm not the OP, but I was in the same position as OP's older siblings just a few short months ago.

I will guarantee you that OP and her dad are in denial about the mom's condition. The sister who is suggesting memory care can see that it's necessary because she is looking at it from the outside. It will take a crisis for OP and her Dad to realize/ acknowledge just how bad things have become.

[Anonymous]

Hi OP here tremendous helpful responses thank you so very much

1. We have an aid come in 4 hours twice a week to relieve my Dad so he can visit friends and do some things.
2. I believe it's the aricept that my mother has that seems to stabilize the disease. The biggest thing is not wanting to bathe and modesty issues even with my Dad. Even the female aids aren't either pro-active enough and she just simply refuses and so he's gone to Plan B with sponge-baths and the like, but this seems the hardest area for a breakthrough (although really it shouldn't be, right?)

Occasional bathroom messes is the other. But her mood, appetite, general demeanor *laughs a lot* enjoys music and being at home where there is a view and such. .. .these are the positives I see and no deterioration in these areas really. She tracks conversation and gets a boost in social situations. She laughs along with jokes and keeps eye engagement and is her general good mood 95% of the time.

3. Sister has power of attorney and financial control I believe on accounts. We have toured care centers locally and we have her name on waiting lists in case of emergency.

4. Sounds like the big thing we are missing perhaps is a Counselor from the State Agency of Aging maybe for an appointment or a case manager from this agency or one like it???

So much great feedback I really appreciate those who took the time to respond.