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

[Anonymous]

The issue with bathing is very, very, very common and it can even be an issue in a care facility. The difference is they would develop a care plan with a multidisciplinary team to work through it, but they are not necessarily going to force the issue either.

Sounds like you and your family have already thought ahead. Meeting with a care manager is not a bad idea - they can give you additional feedback. My one real piece of advice is to keep an open mind. If at any point there is a health crisis or your mom begins to wander or have regular bathroom accidents, it will become difficulty to manage her care at home - and this has zero to do with what place you are at in your life (as you mentioned in your OP). This stuff is incredibly difficult and challenging for everyone and anyone, and you should not feel guilty if you are unable to assume the burden of care, or if your mom eventually needs go to a facility. Try to let that s**t go, it doesn’t help you or your mom.

[Anonymous]

Anonymous wrote: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.

OP I would be thinking about Memory care sooner rather than later. The bathroom issues really through my mom over the edge in dealing with dad, though it sounds like her mom has much better mood and demeanor than we dealt with. You can't expect the aides to miraculously make baths happen. As someone on here mentioned, at a MC they would have a team involved in planning which would make it more likely, but they can't force it. Very good that you have toured places and have her name on waitlists. Be proactive on waitlist when you come to terms with moving her. They don''t want to waste their time calling people who aren't there yet.

Do they have steps? How are her gait and balance?

[Anonymous]

OP the big issue here is your dad. It’s likely/inevitable that your dad is going to have a health/mental health crisis that means he can’t care for your mom. So you need to prepare for that. You need to have a plan for either 24/7 home care or a memory care facility for your mom in the event your dad is incapacitated. It’s you, aides, or a facility and you need to know before it happens because you’re also going to be dealing with your dad at that point.

Usually budget is a factor so get all of those ducks in a row now. Have the conversation with your dad. If he falls and breaks a hip tomorrow, what is the plan for your mom? Can you execute it without him?

[Anonymous]

Some great advice already. A couple of additional thoughts:
- take your issues with your own place in life out of the discussion, make your parents and their well-being the center - always - of decision-making and discussion. It really isn't about you and making sure you always keep them at the center will help w/ fraught sibling relationships and your own regrets later.
- Safety first. Always safety first. Two 86 yr olds living independently, one as a caregiver for the other w/ dementia, is - by definition - a situation that can only remain safe/calm/stable for a finite period. The question is what sort of intervention will be needed and when that will happen, not if. Your parents are one fall or one bad virus away from a crisis - so it is very smart to be planning for that now.
- If your sister has POA and financial control then you are not the one with all the responsibility. Things will change as soon as your father is not making the decisions. If your parents chose her for that role then you will need to take second seat to her role (when the time comes). If you and she can work together that would probably be hugely helpful for her, and for your parents, so you might invest some time in talking about these issues w/ her. You could be her ally when the time comes.
- As much as possible, get your father's wishes/opinions/preferences spelled out while he still can. When the time comes that difficult decisions need to be made, if you can refer back to what he wanted (rather than what you or anyone else thinks is best) it will help clarify what to do. It may also minimize stress between siblings and save you significant guilt later.

I'm the oldest of 3, and I was the designated child for all medical/financial/legal decisions and responsibility for our parents. Both of my parents are deceased now and we had (and are still dealing with) every variation on long-term care, crisis management, estate management/resolution etc... possible. So my thoughts above stem from that. You have the ability to do many of things that are what got me through:
- keep your parents safety as the primary driver for all decisions
- keep their wishes as the second most important driver for all decisions. I regret the last weeks of my mother's life in many ways, but I also know that she made the decisions. So even though I disagreed w/ some of her choices, I gave her the ability to make them, and I supported them. There is comfort in that now. I couldn't prevent her dying but I could give her as much control over her own life as possible for as long as she was with us.
- Support your sister. Support her decisions, don't argue with her, don't fight about possessions or small dollar amounts, etc. I have very strained/limited relationships w/ my siblings (addictions being at the heart of almost all of it) so there was never any question that i was the only one responsible enough to handle the burden of the last few years of our parents' lives. But at every crunch point, every tough decision, all the estate management nightmares, my siblings both, consistently, supported me. I will never forget it and I am eternally grateful. Being the one with all the responsibility is very hard, so just support your sister as much as you possibly can when that time comes.

These years are so hard OP. You have the gift of proximity and time to spend w/ your parents, so take advantage of that while you can. You can deal with whatever junk in your own life you have to manage whenever you choose, but try to keep that separated from how you enjoy your remaining time w/ your mom and dad.

Hang in there.

[Anonymous]

I posted already, but now am confused. In the first post you implied your siblings say everything is your problem with the parents, but in another post you say your sister wants your clearly impaired mom in MC. You also say your dad is very high functioning, yet you also say he sees this as sustainable. It sounds like you have some magical thinking and your sister is saying if you insist all is well then it will be your problem to deal with emergencies.

After dealing with enough emergencies myself and seeing what a mess things were with my parents and my sister resisting placing them in a safer situation where there are people to deal with emergencies, I also had to say, that is fine, but it is now your job to put out fires.

I also hear from you and a lot of people here some very rigid and jaded thinking about Memory Care. Memory care was a Godsend in our situation. Heck, OP you even said you visit some. I cannot imagine every single one you saw was just dreadful. Make sure you aren't looking at MC and thinking of the needs of mom as she used to be vs. looking at it and thinking of the person mom is now. Some of the activities my dad loved at MC were things he would have never participated in when he was a say high powered 55 year old.

[Anonymous]

Hi OP here real quick. People were interested to know the combination of meds my Mom is using as they seem to be effective (for her) and like I said, since she was diagnosed in 2015 she hasn't had any downward trends really at all. She had an initial setback that got her to her current level of care, but then stability. It's quite a miracle and continue to remain grateful in the moment that we can laugh together and have time together because I know anything can happen at any time.

Aricept and Memantine are her dementia meds and she takes a dose of each in the AM then before bed.

[Anonymous]

Anonymous wrote:Some great advice already. A couple of additional thoughts:
- take your issues with your own place in life out of the discussion, make your parents and their well-being the center - always - of decision-making and discussion. It really isn't about you and making sure you always keep them at the center will help w/ fraught sibling relationships and your own regrets later.
- Safety first. Always safety first. Two 86 yr olds living independently, one as a caregiver for the other w/ dementia, is - by definition - a situation that can only remain safe/calm/stable for a finite period. The question is what sort of intervention will be needed and when that will happen, not if. Your parents are one fall or one bad virus away from a crisis - so it is very smart to be planning for that now.
- If your sister has POA and financial control then you are not the one with all the responsibility. Things will change as soon as your father is not making the decisions. If your parents chose her for that role then you will need to take second seat to her role (when the time comes). If you and she can work together that would probably be hugely helpful for her, and for your parents, so you might invest some time in talking about these issues w/ her. You could be her ally when the time comes.
- As much as possible, get your father's wishes/opinions/preferences spelled out while he still can. When the time comes that difficult decisions need to be made, if you can refer back to what he wanted (rather than what you or anyone else thinks is best) it will help clarify what to do. It may also minimize stress between siblings and save you significant guilt later.

I'm the oldest of 3, and I was the designated child for all medical/financial/legal decisions and responsibility for our parents. Both of my parents are deceased now and we had (and are still dealing with) every variation on long-term care, crisis management, estate management/resolution etc... possible. So my thoughts above stem from that. You have the ability to do many of things that are what got me through:
- keep your parents safety as the primary driver for all decisions
- keep their wishes as the second most important driver for all decisions. I regret the last weeks of my mother's life in many ways, but I also know that she made the decisions. So even though I disagreed w/ some of her choices, I gave her the ability to make them, and I supported them. There is comfort in that now. I couldn't prevent her dying but I could give her as much control over her own life as possible for as long as she was with us.
- Support your sister. Support her decisions, don't argue with her, don't fight about possessions or small dollar amounts, etc. I have very strained/limited relationships w/ my siblings (addictions being at the heart of almost all of it) so there was never any question that i was the only one responsible enough to handle the burden of the last few years of our parents' lives. But at every crunch point, every tough decision, all the estate management nightmares, my siblings both, consistently, supported me. I will never forget it and I am eternally grateful. Being the one with all the responsibility is very hard, so just support your sister as much as you possibly can when that time comes.

These years are so hard OP. You have the gift of proximity and time to spend w/ your parents, so take advantage of that while you can. You can deal with whatever junk in your own life you have to manage whenever you choose, but try to keep that separated from how you enjoy your remaining time w/ your mom and dad.

Hang in there.

I agree with some of this and I hope it's this clear cut for others. In our case parent's wishes went directly against their safety. I had to work in therapy to accept I could not keep them safe while the medical community still considered them cognitively capable. I do suspect there is a prodromal period where they pass the tests for dementia, but are clearly disabled enough they shouldn't,but I have to let that go.

If your parents are well behaved and enjoyable to be around I agree with the above, savor this with them. If one becomes abusive, combative, paranoid, etc and refuses to stay on meds and the doctors can't help, protect yourself. Take care of yourself. Let outside professionals work with the situation and figure out your limits.

I agree with doing what you can to foster sibling support and not add to drama even when you don't get along with the sibling. My case is extreme. Sibling is definitely getting financial favors for playing into mom's warped reality and has even thrown me under the bus to mom (when I let her know all my concerns, she "told on me" and mom lashed out). Here's the thing, mom enjoys siblings company. They were never close before. Yes, sibling is taking advantage, but as much as I dislike her, I know she is not to going to take all the money, she will simply pay herself generously for her time. Mom is happy. I cannot be around mom due to the abusive behavior, but now I not only have professionals involved, but a sibling keeping her company. If I started a huge fight, sibling would make my life hell and make mom all hysterical. It's not an ideal situation by any stretch, but I have needed to let a lot go for the sake of not having hysteria. I don't plan to be involved with sibling at all after mom passes, because I think she is a snake in the grass, but if I tried to expose her now I guarantee you mom would lash out on me and lose sibling's visits. If she starts to truly rob mom blind that is another story, but for now she is basically just an incredibly expensive visitor.

[Anonymous]

I thought the same and my sibling took everything by hiring an attorney and getting my mother to revoke my parents' revocable trust. Greed and a sense of entitlement change people.