'no man's land' (AL/MC)

Sleepless in Sleep

I touched on this issue with a reply to someone else, but it is where I find myself.

I believe my LO is 30+% (could be close to 6, but just not sure) into stage 5. At this point I think they are easily beyond AL, but just not 'ready' for MC. It seems we are in 'no man's land.' I also think they are going to need a professional care environment soon. I am an only child, and as much as it pains me, I have responsibilities that make it impossible for me to handle on going 24/7 care.

Another reply in the other thread mentioned High Accuity AL, but I am not sure that is an option (I have visited 3 places so far). 

For anyone that has been in this position, do we just continue to tuff it out until MC is fully appropriate, or are there other approaches I am missing?

*I have young children in the house and we have planned for the cost of a care facility.

Marta

By what criteria are you judging that loved one is not ready for MC?

harshedbuzz

SiS-

What Marta said. 

I feel like there's a tendency for families to view their LOs through rose-tinted lenses recalling them at their most lucid rather than taking the approach that care level should be determined by the PWD's skills/behaviors on a bad day. By the time most families are willing to consider AL, that cruise has long sailed. You might be the exception.

I toured about a dozen facility ahead of placing dad. There were a couple of places that styled themselves as "AL for MC"; most often these were corporate facilities that offered Personal Care and Memory Care both. One side was secure, the other not. 

One strategy would be to place dad in a community that offers both AL and MC; this would mean they'd evaluate him and presumably make a non-biased decision. Although, there is a certain amount of bait and switch in placement where a PWD is accepted into AL on a trial basis that the facility knows they're going to fail. If you are happy with both AL and MC in one place, this could be a safe strategy especially if you can pay ala carte for additional help in AL. Another option is to look for a community that has both and is flexible about allowing someone who has one foot in MC and one in AL participate in some of the social activities on the AL side while a resident of MC. My aunt's MCF did this; she was a MC resident but was included in crafts, lunch and outings with the AL residents for several years.

HB

Sleepless in Sleep

Good question Marta.

I am basing this off of what I am seeing during my visits to the MC facilities and the belief that my LO is not 'ready' to be locked down. Not sure if that makes sense?

Wandering is not a problem, yet, and my LO still enjoys short walks and having their 'alone' time. Alone time is few hours at a time, a few days a week, in their condo community (LO's previous full-time home). There are a handful of friends in the community that know what is happening and they visit with them, etc.

Sleepless in Sleep

harshedbuzz, what you describe is what I may be dealing with. Am I looking through rose colored glasses?

I just struggle with the idea that my LO is 'ready' for the MC environment, and maybe that is based on their better days?I will have to consider that.

My objective thought is that we are in 'no man's land.'

Based on what you mention, I will circle back to the AL/MC places, and see if they accommodate some cross-over for activities-food service etc. Thanks for the idea.

King Boo

The population in MC is a constantly moving target.  You can chase 'the right' population for your LO one month, only to find many other residents have declined more rapidly.

At Stage 5, there is no way I would place in AL. Their stay will be short, their needs not met, and they get 'lost' with higher functioning residents - which we children desperately want to believe they belong with.   But we all over estimate our LO's abilities as not MC ready, when they really are.

It is much easier to expand upon MC services than to patch together a low level of care at AL and keep your fingers crossed nothing bad will happen.  The former you LO is safe if it is a good facility - at AL, they are very exposed.

Place in MC and activities should be able to schedule outside walks, excursions etc and you can always hire extra.

Wishful thinking be gone.  Place for the worst day, with room for years of residency and keep your eye on the skilled nursing facility you will use.  It would be great if there is one at the community you choose - more bang for your buck with spend down for a long time resident, vs. going in penniless and queing up for a Medicaid bed.

I am sorry to be so blunt, but I tortured myself with this, and worked against myself.

Stuck in the middle

I would do it now.

You say wandering is not yet a problem, but they enjoy short walks.  The problem is, the day you find out wandering has become a problem may be catastrophic.  I know a PWD who began adult day care while spouse was at work after mistaking a neighbors house for his own and kicking open the locked door.  In a place where there are more guns than people, that could have been fatal.

The TV news cancelled a "silver alert" last week after the PWD was found in a crop field suffering from heat exhaustion.  Last winter, a PWD in our area was found too late on a very cold day.

Similarly, you may find they need supervision taking meds the hard way.  Or trying to cook and burning the place down.

It won't hurt your LO to be the smartest person in the room for a little while.  If they need 24/7 care, I would go directly to MC.

Lindsay22

The thing is, you just don't know when a sharp decline might occur and then you may need a locked facility right away. This happened with my aunt who was in AL, never wandered until one night...she did. To the parking lot, in the winter, in her pajamas, to try car doors trying to get home.  Then they called and told us we had to move her to MC that day because they couldn't ensure her safety any longer.  So my mom is going to a AL/MC combo where they will determine when she needs to be on the MC side, especially at night when there is higher security.  During the day they mix for meals/activities but their rooms are on the MC side which is secure.

MN Chickadee

If it were me I would not move to AL for someone in stage 5. That stay will be very short, and you may have to move him again right away and have more chaos in his life in a short amount of time. And suddenly be asked to hire round the clock care if he isn't safe in that kind of setting, because they are not staffed in AL for dementia. Keep in mind a move may set him back temporarily, being out of new surroundings. Are you sure he won't wander in a new place? One thing I have learned is that being prepared, thinking one step ahead, and having a plan B are essential. Making decisions based on wishful thinking and what we hope for or what we wish was true is not helpful. We often think more independence is a good thing and should be the top priority, but that isn't always the case. Moving to memory care a month "too early" is so much better than a day too late, take it from someone who knows. The people change. Today they might all be decrepit, next week there may be turnover and a few more like him. 

The high acuity thing is a term that doesn't mean the same thing everywhere. Each state, each facility has different terms and meanings. My mother's first unit was considered Assisted living with memory care. It was a locked unit, had people from all stages of the disease from busy and pretty with it, to those on hospice who completed the journey and passed away there. But what mattered was it was locked, it had the staffing ratio to deal with dementia stuff, the training, and activities geared for dementia she could partake in. Do you think your dad can do regular activities with his peers in AL? Get himself to meals and activities, likely on his own without much reminding?  AL often means you need a certain level of independence. You need to go through what the places offer with a fine tooth comb and see if it actually matches his needs. And assume his needs could change on a dime. Things can change so quickly with dementia. A random decline can happen with most of the dementias, or a fall or infection or any number of things can suddenly affect cognition and you're up a creek without a paddle if he isn't at a level of care where he can decline in place. 

Sleepless in Sleep

Just wanted to let everyone know I am reading and learning from all of your replies. If anyone else has experience, please add it here. 

Very helpful, Thank You.

MN Chickadee

No matter what you decide to do now, I would get on wait lists at your top 3 memory care choices asap. There is often a wait, so this way you will know you are on the list and make the decision if and when they call. Usually if you decline the room you stay at the top of the list and they will call again the next time a bed is available, but verify with each place. This is a good way to have a back up plan when a PWD is in a precarious situation. At least if the stuff hits the fan and you need that higher care all of a sudden you will know you only have to cobble together temporary care for a short while.

quartlow2

In my parent's MC facility they have 2 separate MC units. One unit is for those who are more mobile with less cognitive abilities. The other unit is for those with less physical abilities but are higher function cognitively. I don't remember them mentioning this when we discussed where they would fit best.