Is It Ever Too Early To Move to AL?

BJW714

My older sister (75yo) was diagnosed with AD about 3 years ago and has been living on her own with drop in care for about 2-4 hours/day, 5 days/week.  Recently, she's had more 'bad days', is losing weight and her neurologist is 100% sure she needs to move to AL.  We've found a nice place and we 3 siblings agree it's a good place for her and have a tentative move in date. 

My POA sister who's responsible is now having second thoughts about moving her.  I believe she's feeling sorry for our older sister, who doesn't want to move, although she regrets the burden and stress she places on our POA sister (and quickly forgets the conversations).  Her  caregivers bring her groceries, tidy up, and occasionally take her on outings to the park, dentist, etc.

The 2 caregivers and my POA sister feel that older sister can continue to live on her own, but 2 of us siblings feel that she will do better with regular engagement, better nutrition and support in an AL place.  She definitely thrives on socializing, is otherwise healthy and has no mobility issues.

Question:  Is it ever too early to move a LO into AL?  I see comments about transitioning too late, but nothing on transitioning too early.  One of the posters mentioned that you should plan care based on her worst day, not her best day, and that makes sense to me.  Thank you for sharing any experience and insight.  This is new territory for us!

terei

After my mom moved to AL, I kept her companion that she had still visit her once a week + take her thrifting or to lunch or the dairy queen...whatever my mom wanted.

There is no reason to feel ‘sorry’ for her.  If you choose correctly, there will be daily activities, music coming in, movies, yoga, bingo, socializing as much as she can handle + even hairdressing..   My mom’s even had a weekly Happy Hour.

The best thing was that her medical team CAME to the facility..including podiatrist.  The only thing medical she ever needed after that was dental visits.

AL helps the LO where needed.  I doubt you can place too early + you can never be sure when or if there will be a precipitous decline that would necessitate a rushed, quick placement

RanchersWife

Keeping it light. I want to move into assisted living. (I have 5 kids, a husband, a cattle ranch and a stage 6/7 AD mil.) 

On a serious note. If the money is there,...

Stuck in the middle

AL isn't just for people with dementia.  Lots of older people who have mobility issues choose to live in AL.  I plan to do it myself when I quit driving.

M1

I'm right with you, Stuck and Rancherswife. Id rather go too soon than too late and I plan to be extremely proactive on this front.

Iris L.

If she does not have animals to care for she should move now.  I would move now but I have cats.  Also I am waiting for Covid to resolve more.  The main thing is to have a safe comfortable environment. 

Iris L.

harshedbuzz

I've never heard of anyone saying they felt they moved a PWD to AL too soon, but I know of plenty of folks whose families made the choice to move a LO to AL long after they were capable to make a success of it.

In most places, the term AL refers to a hospitality model of congregate living- think long term hotel. You get a room, meals, housekeeping and amenities. Most will offer a daily well check and the distribution of medications. AL doesn't provide much in the way of support unless it is a high acuity for MC situation. A resident is expected to be self sufficient to make it to meals and activities on time. IME, unless the PWD is very early in the disease progression, other residents will shun them when they can't manage conversation at meals or participate appropriately in the activities which aren't scaled to PWD. 

It sounds like your sister might be a better candidate for a MCF where staff are dementia trained and the meals and activities are geared towards PWD. More hands on care will be available as she starts to need help with hygiene and toileting. 

It's probably best not to talk about the move, but to pick the best available place and move her using the POA. 

HB

MN Chickadee

As HB said, make sure this AL is actually able to offer what she needs. People  often confuse AL with memory care. Some AL do offer memory care services but not all, so the first thing to do is makes sure she could actually thrive there. That means close oversight on eating and healthcare, bathing, reminders and an escort to get to meals and activities, a staffing ratio higher than typical AL, and most importantly, activities she can actually do. If the activities are designed for cognitively normal seniors then she probably will not enjoy them or be able to participate. Activities in MC are adapted and created for people with dementia. 

So assuming you have chosen a place that has the staff ratio, staff training, and services needed for dementia care then I would go for it. Better a month too early than a day too late. And yes, decide based on her worst days. These are a benchmark for what is to become the new normal. These permanent declines can be sudden, and so it can become a gamble of waiting until you think the PWD requires the care balanced with the risk of a crisis. After an adjustment period my mother thrived in MC. The health care oversight by the nurses was so much better than we could have offered at home. They were there 24/7 and came to know her so well, they could spot issues long before we could. We switched her to the visiting physician who came to the facility. This made it so easy to communicate with her doctor. I can just show up Tuesday mornings knowing the doctor will be there. He can see her as often as needed since he's there anyway. The socialization and activities were good for her.  She eats better because the staff are trained at helping and monitor all food and drink, so she has close oversight and gained back all the weight she had lost and more. She is better hydrated because it's in her care plan and they make sure she gets liquids. She has done really well and the high level of structure and support has served her well. If the neurologist is saying she needs 24/7 care I would run with that. I'm sure it's a hard decision for the POA sibling. It's a big decision, and a lot of the guilt will rest with whoever has decision making power. It's a hard journey and a bitter pill to swallow. Try to be supportive and understanding of that while pushing to make the move happen. Guilt and grief and what-ifs are par for the course. Good luck and keep us posted.

sjohnson

Move her now.  I wish that we would have moved my mom earlier than we did.  I agree that it needs to be AL that has MC also.  One criteria for AL that we were told is that the person has to be safe behind closed doors.  Meaning that the individual would have to be able to get themselves dressed, to the bathroom, be able to feed themselves.  The staff would assist in showering if needed.  The AL we moved my mom to was great.  They took care of everything except that there wasn't a visiting doctor at that level.  They made certain she got her meds and did her laundry and got her to meals and to activities.  Before moving to AL, my mom was in her own apartment.  Which was fine; but there were signs of her dementia getting worse that I did not see and then I didn't want to admit it.  My mom stayed in her apartment longer than she should have.  She was having a lot more issues than anyone even knew.  She wasn't happy about moving to AL; but after a couple of weeks, she was happy.  

King Boo

No.  But it can definitely be too late, which it really sounds like your sister is approaching!

With weight loss - her food intake needs to be monitered.  Most regular AL don't do that.

Most likely your POA sister is having a case of the 'guilties' and the old 'not bad enough' rationale that gets our LOWD in major trouble when they are left without a high enough level of care.

So, POA sister needs to step up the care level at home to more hours, 7 days a week, and include a nutrition plan (which equals more costs, too) - OR

realize her stay at AL is going to be very short anyway and grab this traincar while it is still an option.

POA sister also needs to stop discussing things in such detail with your LOWD.  Working against the whole situation........she's never going to say "yes, I'd love to move to AL" which is ridiculously, what we hope they will say.

Cynbar

Of course the private caregivers are going to say she can stay at home, their jobs are on the line here. Please encourage your POA sister to listen to the neurologist and not the caregivers with a vested interest. There is lot of evidence here for placement, but keep a close eye out for even more serious issues like wandering, leaving the stove on, spoiled food, etc. At the very least, I hope your POA sister will increase the caregiving to daily, the current plan does not sound like it is sufficient.

NylaBlue

There is no such thing as too early, provided the LO agrees to the move and has sufficient financial resources. If not, then the assessment starts. As others have said, AL is not just for those with cognitive issues. If your sister is struggling to care for herself for any reason, AL may be a godsend.

abc123

One of the most important things I have learned on this journey is it’s never too early to do

Anything! Research, develop a plan AND make it happen. I wish you well.

BJW714

Thanks everyone, for your quick and thoughtful responses.   We 4 sibs read them all and discussed at our Zoom meeting today.  POA sister is now totally onboard with moving older sister to AL, in part due to reading about your experiences, so many, many thanks for your support!  

Yes, her AL place has graduated care from independent to AL to transitional to MC, and we will ask in greater detail about activities and support geared to those with dementia.  I did worry about other residents 'shunning' her since she repeats questions, which can be trying as you all know.  We received her assessment report today and they scored her as needing the top level of care (which means an additional $1,500/month in support services) and we'll question that, since she doesn't need help with any ADL, only Rx reminders and escort services.  Fortunately, she has the financial resources as a single, retired professional, so that's not an issue.  

Two of us are flying in from out of state to help with the move and I'm taking one for the team by staying overnight with older sis for the first few days to help her transition.