help, decision to make

LisaLH

My step father was diagnosed with alz in 2017(he had it before 2017)  This was 2 years after my mother passed.  Due to emergency health issues which accelerated it and being insulin dependent diabetic I moved him to assisted living. I am 2 hours away and only moved him to that location because the rest of the family, who live close to him, made grand promises of spending time with him.  My sister is the only one that sees him besides me and helps me with his needs.  We alternate weeks.  

I would say he is in the middle to late middle stages.  He dresses himself, interacts somewhat with people, has a garden there that people help him with, but of course never remembers anything past 5 minutes.  I am not sure he is bathing and denies he has dentures so I know he isn't cleaning them.  Just some more info.  

Questions:  he is ok in AL but he tries/has gotten out a few times. He has only got truly outside when a visitor with the code let him out thinking he was another visitor.  Otherwise he will push on the door(fire door, 30 sec. open time) long enough to get through the 1st set and then he is caught. He thinks no one comes to see him, that he doesn't do anything, or go anywhere because of his memory.  He doesn't believe he is 74.  He is living in about his 30's.  When is it time to move him to MC?  I've been looking at MC facilities and he doesn't need even half of the assistance they need but some of them have so many more activities to keep him busy as well as outings.  Also if I move him it would be close to me because I have the time to visit him more often if he isn't 2 hrs one way from me.

Another question:  my sister, who has been my saving grace, is totally against me moving him to MC anytime soon.  She says he isn't "ready yet".  She is a very "heart" person where I tend to be more practical and try to take emotions out of this.  I guess that's why he and my mother pick me as their POA's etc.  How do I get her to be ok with it?  

M1

Lisa, sounds to me like the time is now. He's not "okay in AL" if hes gotten out, you're just lucky nothing untoward happened. Yet.

I'm sure you don't want conflict with your sister, but do you have power of attorney? If so, you get to make the decision.

Good luck, he's fortunate to have you looking out for him.

loveskitties

You don't mention if the current facility has MC option.  If they don't they may make the decision for you and your sister, if he no longer meets their criteria for AL.

Does he have a Dr. assessing his abilities?  If so, that person may help your sister to understand the needs.

Wishing you the best

star26

 Hi Lisa,  

I agree with getting input from the AL and his MD If possible. Not because I don’t believe he’s appropriate for MC, but for both you and your sister’s sake in feeling it’s the right decision at the right time. A few other things to consider if you haven’t already: 

-It’s uncertain whether your Dad will participate in MC activities or whether it will have any effect on his belief that he doesn’t do anything or go anywhere. However, rather than leaving him to his own devices, a good MC will attempt to keep him engaged and occupied so those thoughts can’t fester and lead to behaviors. (I’d definitely look for a place that offers gardening since this is something he enjoys. And I love the facilities that seem like a town inside with various places to go.) 

-It’s possible that the move and new environment could cause a decline for him. This is not a reason to avoid moving him if he needs to move, but it’s good to know it’s a possibility. And ideally it’s good if both you and your sister acknowledge this possibility but agree that the benefits of the move outweigh this risk of triggering an inevitable decline. Other members here have had guilt and regret about a MC move when their loved one is not doing well in the new environment and I am just imagining this could be particularly difficult for you and your sister if she was not in favor of the move in the first place. 

-Your top choices of MC may have waiting lists. If you wait until the last possible moment to move him from AL it might be a situation where you don’t have the luxury of going on a waiting list and you might have to place him in a less desirable facility. (maybe this could be a selling point for your sister?) I’d feel more comfortable about waiting if his current AL had a MC wing and said a transfer when needed would be no problem. Then you could move him to your location when possible. 

I see the importance of having your sister feeling okay about the move. A lot of us here have siblings that do not offer any help or support and the fact that you and your sister are working almost like a team is very valuable. I agree with trying to get her more comfortable with the move rather than “pulling rank” with the POA. The decision to move a parent to MC can be tough emotionally because there can be a stark difference between the residents of MC vs AL and frankly, some MCs can appear pretty bleak and depressing because of this. Also, it’s one more step towards “the end” and besides hospice, MC can be seen as the end of the line for dementia progression. If any of this accounts for your sister’s feelings, maybe having her tour a particularly great MC candidate in your area might make a difference. A place where she could see what he would be GAINING from the move rather than it being a negative for him. In addition to lots of activities and engagement, she might appreciate a facility with heavy focus on dementia training for the staff to improve quality of life for residents. 

Hopefully others will continue to provide their input. Let us know what you decide and how it goes. There’s lots of people in the same boat. 

harshedbuzz

LisaLH wrote:

Questions:  he is ok in AL but he tries/has gotten out a few times. He has only got truly outside when a visitor with the code let him out thinking he was another visitor.  Otherwise he will push on the door(fire door, 30 sec. open time) long enough to get through the 1st set and then he is caught.

For safety's sake, he needs a truly secure unit. He could easily slip away next time if they're short staffed or there's a situation where staff are distracted by another resident's needs. This alone is reason to move him asap.

He thinks no one comes to see him, that he doesn't do anything, or go anywhere because of his memory. 

A move may not fix that even if you visited daily.

My dad had a visitor daily and claimed we never came to see him. Of course, he had lots of imaginary people visit, so perhaps it was a wash. 

He doesn't believe he is 74.  He is living in about his 30's.  When is it time to move him to MC?  I've been looking at MC facilities and he doesn't need even half of the assistance they need but some of them have so many more activities to keep him busy as well as outings.  Also if I move him it would be close to me because I have the time to visit him more often if he isn't 2 hrs one way from me.

One of the problems with a hospitality AL is that they aren't trained or staffed to attend to the emotional as well as physical needs of their residents. In AL, he could miss meals, because he doesn't know it's time to eat, he may be shunned by other residents because he can't keep up cognitively or conversationally or because his social filter causes him to be inappropriate. This happened to an aunt who had been so well scaffolded for at home that placement was done in AL when she was MC material- it was an unmitigated disaster (missed meals, meangirls, and lying on the floor with a broken hip for about 18 hours which hastened her death.

Staff in a quality facility will engage him with activities on his level and there will be more of them around to attend to his needs both emotional and physical. 

I can appreciate that it can be difficult to tour MCFs when your LO is only in mid-stages because there are always those who seem/are further along in the journey than where your DSD is right now. But that is the strength of MC- he can age in place without being turfed elsewhere. He doesn't "need" all of what they offer, but it sounds like he could use some prompting around oral hygiene at the very least which means there may be other aspects of selfcare of which you may not be aware that need attending to. 

Another question:  my sister, who has been my saving grace, is totally against me moving him to MC anytime soon.  She says he isn't "ready yet".  She is a very "heart" person where I tend to be more practical and try to take emotions out of this.  I guess that's why he and my mother pick me as their POA's etc.  How do I get her to be ok with it?  

Sis says "he's not ready yet". I think she's not ready yet. And while I can appreciate that it can be hard to place a LO in a place populated by some people who are more impaired, it really isn't about her. If you are the POA, it is your responsibility to make the best choice. I had an uncle who played devil's advocate around this. Based on his once-every-six-weeks 45 minute drive-by, he didn't feel dad was "quite ready for MC" and was pretty salty about it. I chose a MCF in his town so he couldn't use distance as an excuse, he visited dad once (and called me to complain about a lack of TV in his room insinuating I was too cheap to spend for this- TV confused dad and became a source of anxiety) in the 7 weeks he was there before he passed away.

Another thought is that the model for MCFs generally requires a PWD to be admitted in a stage where they are still capable of ambulation, self feeding, etc. If there was a stroke or fall that changed that, the door to a nicer MCF with activities and a home-like feeling would be lost- he'd have to be placed in a SNF.

The other piece is that while most MCFs will allow a resident to "age in place", there will come a time (unless he dies of something else first) when you will have emergency runs to the ER or calls for falls. Your don't need to add a 2 hour drive to both ends of these emergencies. 

HB

Cynbar

Bottom line, it's about his safety. Sounds like exit seeking is increasing, one of these times he is going to make it. There was a story in my area recently about an elderly man who wandered away and was found dead in the woods. Stepdad needs MC placement that can securely keep him in. The rest will fall into place. You parents made you POA because they trusted you to make sound decisions for them. Sometimes you can get other family members onboard, sometimes you can't. Your vote is the only one that matters.

LisaLH

Thanks everyone. This really helped. Right now he has his garden he can see right out his living room window that he tends to every day. This fall to winter when it is no longer viable I plan to move him to memory care. Whether I move him to the memory care at the location he’s at, which is two hours away from me but closer to rest of the family, or whether I move him closer to me is the next question. The memory care that is attached to the assisted living he is at is OK but anytime I’ve spontaneously gone through there no one appears to be doing anything. They are either in the rooms watching TV or sitting in the living room watching TV. The one memory care closer to me that I’ve actually had time to look at has so much going on for the residents. I think one of the worries my sister has is if he needs someone over there it will always be me because no other family lives by me. At this point I’ve got some time to make that decision as I’m looking.

Sjodry

Lisa,

It is a hard decision to make. What I discovered about the decision was that it was (and is) usually past time. I kept seeing cognitively appropriate moments from my mom and tended to keep telling myself we were “close” but not quite there. On one particularly difficult behavior evening, I took my mom to a psychiatric hospital. The visit ended up being more for me than her. The doctor pointed out that my mom was not the mom I had grown up with and it was time for memory care immediately. It was a bit of a reality slap which I needed to make the decision.

As gut-wrenching as the decision is, I found that my mom adapted to the memory care unit much easier than I expected. After having her there for quite awhile and then bringing her to my home (5 mins from memory care), I saw that she had become used to and comfortable with the memory care surroundings. She started getting anxious and asking when we needed to leave.

It is different for each resident based on their individual functioning, but I think they eventually adapt.

Best of luck to you both with your dad.

Take care.

Sandy

bela

AL usually lets you increase the level of care, right? Exit seeking is dangerous so the extra level would be to increase supervision if they offer it -my guess is AL might not be meeting his need for activities, getting outdoors, staying involved etc so exit seeking behavior can increase- but exit seeki g is pretty common even if there is an active s hedule - I’d feel safer in a locked unit . For now are there gps shoes/other devices/safe guards that can be implemented? You do not want him to get out and wander the streets -he needs the de urs features that some facilities have - start reading up on exit seeking dos and  donts and doing so may give you facts to convince  the one opposed. A solution to exit seeking is a must -