Knowing What to do

JWMCeli

My brother & I are working together now to support my mom who was just diagnosed officially with ALZ but has been showing symptoms now for at least 2 years. We want the best for her and to keep her safe and we both are heartbroken. Her short term memory is mostly gone. She has some word and name retrieval issues, and has to ask things like...I love Olivia...she is my grandchild, yes? or when I show her a photo of my kids with her when they were little, she says, " oh look at those beautiful children"....but doesn't realize they are her grandchildren. She knows she loves Olivia, Will Charlotte and Louisa ( my bro's daughter), and the emotions are still strong, it just takes her a minute. We now have her with an aide at her home in FLORIDA every day until. night time, but probably getting closer to needing someone there at night. My brother wants to move mom up north near us into an assisted living place and then memory care. I prefer she stays in her lovely apartment in florida which is familiar and she always said she wanted to age in place. i go down to see her 1-2 times a month for 4 days each visit. My brother does not want to do this which is fair bc he has an 11 year old. I am also worried about moving her bc she has been in her independnt living senior apartment for 25 years. She knows where she is. She knows where the bathroom is. She is known there, etc. Any advice would be helpful. It would be easier to have her up here for my brother and I but would it be better for her? i am not sure. My goal is to keep her safe and not have her ever go to memory care. I would rather have her have 24 hour care 1-1. Thank you for listening. Tough bc we can see a rapid decline in the last year. Dr says it will level out now for 2-3 years. My brother is concerned it could still be going at this rate, and then what do we do? I guess i also wonder if we move her AFTER she doesn't realize where she is. idk, heart is breaking and could use some advice from folks who have been down this road.

harshedbuzz

@JWMCeli Hi and welcome. I am sincerely sorry you have a need to be here but happy you found this place.

TL;DR I'm Team Brother for a lot of reasons.

You said:

My brother & I are working together now to support my mom who was just diagnosed officially with ALZ but has been showing symptoms now for at least 2 years. We want the best for her and to keep her safe and we both are heartbroken. Her short term memory is mostly gone. She has some word and name retrieval issues, and has to ask things like...I love Olivia...she is my grandchild, yes? or when I show her a photo of my kids with her when they were little, she says, " oh look at those beautiful children"....but doesn't realize they are her grandchildren. She knows she loves Olivia, Will Charlotte and Louisa ( my bro's daughter), and the emotions are still strong, it just takes her a minute. We now have her with an aide at her home in FLORIDA every day until. night time, but probably getting closer to needing someone there at night.

If she's already a little confused about family members, she's probably not safe alone for much longer. What you are describing is Stage 4 of the DBAT model— moderate dementia. Maybe even now. The problem is that sometimes, the first sign that 24/7 oversight is required is when something catastrophic happens.

DBAT (7).pdf

My brother wants to move mom up north near us into an assisted living place and then memory care. I prefer she stays in her lovely apartment in florida which is familiar and she always said she wanted to age in place. i go down to see her 1-2 times a month for 4 days each visit. My brother does not want to do this which is fair bc he has an 11 year old. I am also worried about moving her bc she has been in her independnt living senior apartment for 25 years. She knows where she is. She knows where the bathroom is. She is known there, etc.

Your four-day visit doesn't keep her safe the other 26 days of the month. Does mom have unlimited funds or a robust LTC policy to fund 24/7 caregivers including 2 when she is deemed a 2-person-lift? If not, sadly your mom made a wish instead of a plan to make 1:1 care in home happen.

Specific to Florida is the risk of APS involvement if a neighbor or doctor reports mom living alone. Florida has a robust adult guardianship industry; if mom gets caught up in that, you may lose the right to make care decisions for her. Additionally, if you and/or brother are named as her POAs and something happens, you could be held liable legally.

Even if mom's finances and planning make 24 care in-house doable, it is extremely challenging to manage caregiver oversight from a distance. IMO, a PWD needs to live close enough to their POA once they hit the stage where you mom is as falls and infections can mean trips to the ED where mom will need an advocate for health decisions.

I can appreciate wanting to keep her in a familiar setting. I did move my parents out of FL when dad was diagnosed. I get it. TBH, in time she'll likely become confused about where she is and will no longer be toileting. If I had a dollar for every PWD who stood in their long-term home begging to "go home" I could enjoy a nice spa weekend. For PWD, at some point "home" is a feeling of security more than a physical address.

Any advice would be helpful. It would be easier to have her up here for my brother and I but would it be better for her? i am not sure.

I would move her now. I would create a therapeutic fiblet to frame the move as a temporary visit to family and either move her in with you now or into a nice CCRC with AL and MC available as needed. Once she safely moved in, one of you can go back to Florida and close out her apartment and such there.

My goal is to keep her safe and not have her ever go to memory care. I would rather have her have 24 hour care 1-1.

Can she afford 1:1? Where I live caregivers are a little over $30/hour through an agency with extra for holidays and nights. Absenteeism is a huge issue even with agencies who can only sometimes provide a backup. But if it's a no-show shift, you might not even be aware mom is alone.

Thank you for listening. Tough bc we can see a rapid decline in the last year. Dr says it will level out now for 2-3 years.

Really? I have never heard of a physician offering anything more than the vaguest opinions on rate of a PWD's disease progression at the time of diagnosis. Typically, Alzheimer's follows a slower but steady progression in the loss of IADLs and ADLs. Sometimes VD follows a series of steps down followed by a period of relative stability. That said, a fall or illness can hasten things overnight.

My brother is concerned it could still be going at this rate, and then what do we do? I guess i also wonder if we move her AFTER she doesn't realize where she is. idk, heart is breaking and could use some advice from folks who have been down this road.

The biggest caveat is that you don't want this to make the move as an emergency situation. Realistically speaking, 24/7 in-home care is probably only an option if you move her in with you and share responsibility with brother/paid HHAs. A friend did this by having a home built that had a first-floor in-law suite with an ADA compliant bathroom. She provided the bulk of her mom's care but did take 2-3 5 hour breaks through the week and 8 hours on Saturday to spend with her DH. The sale of mom's townhouse funded her care.

If a MCF might be a possibility, be aware that some have waiting lists and that many who allow residents to age-in-place do require a new resident to be ambulatory and self-feeding. If you were to miss that window because of a fall or stroke, she'd likely need to go to skilled nursing which won't be dementia informed in terms of training of staff or activities.

None of this is easy. Safety is always the priority even if happiness can be more elusive. Try to remember that it is the disease making the choices— you are not doing this to her but for her.

HB

H1235

Welcome. So sorry you need to be here. I agree with hb. She is basically aging in reverse. What is safe for her today may not be safe in a few weeks or a wee months. I can understand wanting her to stay in a home environment for as long as possible, but you your are ridding a very dangerous line. You are playing a very risky game with her living alone at the stage she is currently at (based on your description of her). If she starts developing symptoms of sundowning at night while no one is there, things could get very ugly. She may randomly decide to fry some bacon (even if she hasn’t used the stove in years) and burn the house down or she may wander outside into traffic. Some facilities can have a waiting list to get in. If you wait til there is an emergency the whole moving process is going to be so much more difficult. If there were an emergency and she needed to go to the hospital how long would it take you or your brother to get there to advocate for her and give them her medical history? In my opinion she needs to be near her DPOA.

ARIL

HB has given detailed and generous advice. I am #TeamBrother also, for the reasons HB cites. This disease only gets worse; there is no cure. Sometimes it hits a plateau for a while, and then there’s another decline. It has felt like stair steps to me, but the trajectory is only downward.

Moving her near the POA makes good sense. I did a multi-state move for my PWD a while back. It would not be possible now, and now I can visit often and can meet the ambulance at the ER when that is needed (twice in the last year).

You will be better off not setting goals like “never” going to a MCF; it may prove to be necessary, and there’s no need to heap extra guilt on yourself in what will already be a hard moment. Better to set a goal of doing your best for your mom as this disease evolves. That is a goal based in love and does not set unreasonable expectations.

I do understand how hard this is, believe me. But I think your brother is right on this one.

April23

I agree with your brother. I know it’s devastating but having a PWD out of state in independent living with no care at night is a recipe for heartbreak. You’ve been given good advice already above, and all are things you should seriously consider.

psg712

Adding my voice to the Move Now consensus. You may be surprised, once she is moved near you & brother, to find that she is more impaired than you now realize. Yes, the move will be hard on her and on you, but it's the dementia making it necessary. It will be harder when she is further down the road of progression. Or if you have to move her in an emergency situation. Also ... don't discuss the move with her ahead of time. There are lots of posts here on that topic.

Several weeks after I moved my mom long distance to an assisted living facility in my area, some friends asked if I felt guilty about uprooting her from her home and putting her in a care facility. I surprised myself by answering no, I feel bad that I didn't do it sooner. Seeing her more regularly made it evident to me how much she had been struggling with basic tasks and how dangerous it had been for her to be at home alone.