Update: assessment went well, advice on move

Anonymousjpl123

The assessment went really well. Mom is at a higher level of care than I realized (no shock there), but they are confident they can work with her and meet her needs. We discussed incontinence and they asked some tough questions (e.g. am I opposed to the briefs with tape, more like diapers, which are harder to take off. I am not but was filled with unbelievable sadness).

So I’m set to move her this weekend. Truthfully she will get the first single room. Thoughts on whether to bring her furniture or use theirs?

Director said it’s up to me but may be easier to use theirs, this way she really knows it’s temporary. Then if she likes it we figure it out.

Other than that it’s just logistics. I’m so relieved, and so sad.

M1

I would definitely vote for using their furniture. One less thing for you to worry about. Some pieces may be specifically designed for dementia - that's the case at our facility. Familiar objects have just been a trigger for my partner to want to pack them up so that no one will take them.

Anonymousjpl123

That’s what I’m thinking. She is beyond the point of packing her things up now. I really hope she gets her own room soon so she can have more of her things. But for now I think it will be good for her to settle in slowly. I am 100% sure it’s the right move just worried about how hard it will be to not have her things.

psg712

It will probably be harder for you than for her. But I hope the move goes smoothly. You are doing great for her.

M1

I agree that you are probably putting more value on the familiar objects than she will. My experience is more out of sight, out of mind and she won't miss them. It's so hard to imagine what really goes on in their heads. So wr project how we would feel, but i think that's rarely accurate.

Anonymousjpl123

Thank you both for the affirmation re furniture.

It may seem silly but in addition to outdoor space, the new place has a cat and an incredibly sweet little dog. My mom adores animals. I told the assistant director i was worried she might hoard the dog and he said it was fine! I hope this goes well.

psg712

Animals can be so comforting. I've told the story here several times - being able to move my mom's cat with her to AL was key to her adjustment.

My biggest stress in preparing for the transition from AL to MC a year and a half later was having to separate her from the cat. Yet that was where "out of sight, out of mind" truly came into play. She had been in the hospital and rehab, and went from there into MC. Cat had been rehomed and she never mentioned him again. Yet she plays happily with my dog when we bring her to my house ... still enjoys an animal. And calls the dog by her old cat's name!

harshedbuzz

@Anonymousjpl123

It sounds as if you have chosen well.

A couple thoughts on furniture.

Using theirs is easier— no moving now ahead of placement nor later when the inevitable happens. The day I cleaned out dad's room, I donated most of his things and DH and I left with one packing box each. On the drive home we passed the facility that rejected dad; there was a couple with a U-Haul loading a double bed, recliner and curio cabinet at a time when they probably weren't feeling it.

Using theirs allowed us to use a fiblet that dad's stay at this new rehab place was temporary and that his doctor would decide on discharge timing. In retrospect, he might not have noticed but I wasn;t going to chance it. Over time, we brought in a couple of things to personalize the space.

If the furniture is something special, you can expect it to be trashed by your LO and staff. My aunt moved her sister into a MCF with several of her favorite things— they were destroyed. There was a bombe chest that was lovely, staff wiped it down with Lysol wipes, dinged it with wheelchairs and left cold drinks on it.

HB

Anonymousjpl123

@harshedbuzz i know you are right! It’s just her new room is so small, since it’s part of a suite. They’ve convinced me to take only a small area rug, chair, and ottoman. I am probably stressing this way more than mom ever will. We can bring her stuff when she gets the bigger room. You are right, it may not even matter. I think my worry about the furniture is so much more about her past self than her now. She loved her things.

The new place has already been much more proactive with this move than the current place ever was.

(Digression/rant: I’m enraged, but maybe I shouldn’t be. Current place is a small MC in a large assisted living. They came through in a pinch when my mom needed it and I took the room site unseen. I just hate how they make my moms incontinence seem so extraordinary, and like it’s a special toileting trick only I know when I say casually “hey mom we gotta change, I’m heading out soon,” as opposed to literally asking her through the door “do you need the bathroom?” And when she says no saying “see, she refuses care.”)

I’m beating a dead horse. Her new MC has higher levels of care. With 15 out of 25 rooms vacant I’m clearly not the only one disappointed in the corporate place. I gotta let it go.

Plan is: Sunday, my niece and I will put a few of her things in my car, movers will pack everything up and move it while we’re gone, we have breakfast, show up to the new place, where her room will be ready except the few things we’re bringing. We’ll have lunch with her there I guess. I’m nervous but this needs to be done.

She’s gone from late stage 4/early 5 to late 5/early 6 in two years. That’s not the worst. It is very hard preparing for the future, but new place is encouraging me to do so. They are equipped to be her home until the end of her journey.

M1

This is kind of off topic, but I would consider ditching the rug: fall risk. They are not allowed in our facility for that very reason....

Anonymousjpl123

Geez how the heck do I personalize it? I really am asking. It would be so much easier if they had an open studio.

M1

I wouldn't worry about it, honestly. Pictures on the wall maybe, a favorite blanket or coverlet, hat may be enough.

harshedbuzz

The rug leapt out at me, too. With my parents, I am the throw-rug police.

You may be over thinking this. We hung 3 photographs on the wall— 2 poster-sized frame pictures of his favorite golf course and a 20 x 24" of my sister and I as young women. We brought in a pretty comforter and sham, his favorite 8 x 10" of mom, a soft throw banket and his Philadelphia Eagle's Pillow Pet. I think we did this more for us than for him. He never seemed to notice any of it.

HB

Anonymousjpl123

Ok fine no rug. Photos, chair, ottoman, sheets. I will stress that it is only until she gets her room. This is really about her increasing needs than it is about her stuff.

So stupid. I feel like I’ve failed. AL, MC, now MC plus.

Quilting brings calm

You haven’t failed. There no way to prepare for this marathon. Training seminars and books can’t possibly prepare us. We are all like first time parents. We learn as we go along. You are doing your best.
One of the benefits of this forum is that we get the expertise of people who have gone before us. They either learned by trial and error or by advice of people who went before them.

M1

exactly right A. Not stupid at all. But those of us who are ahead of you can give some advice about what’s worked and what hasn’t, what’s turned out to matter and what hasn’t. No way any of us can anticipate it all.

harshedbuzz

You've done great so far.

It's only natural to want to feather a nest for your LO especially as she downsizes into a space you don't consider ideal.

Maybe it would help to remember that many MCFs operate under a model in which the resident's room is meant to be their "bedroom"— pleasant and cozy but intended for sleep and rest. To that end, it shouldn't be so appealing that a PWD "stays in their room" rather than socializing in the living areas of the facility.

HB

psg712

In no way have you failed! Her progression through all these levels of care is the disease causing ongoing changes in her needs. It's so exhausting to adapt and change plans with every stage.

I like the image of our journey with our PWD being like that of a first time parent. The parent is sleep deprived, anxious to do the right thing every time, overthinks all the decisions and blames him/herself if things don't go perfectly. Give yourself some grace. You love your mom and are doing the best you can for her.

My mom's room in MC is significantly smaller than her AL room was, but it really hasn't affected her. I think the coziness suits her needs. And for what it's worth, she doesn't appear to have a lot of attachment anymore to her personal possessions.

Anonymousjpl123

Thank you for giving me that reassurance. I do feel it. I had good feedback from a friend who has been walking each step of this journey with me. She reminded me my mom is on her own sacred journey, and my job is to stay with her and make sure she is safe, clean, warm, comfortable, and not alone. I keep trying to intervene.

I stopped by the new MC yesterday to see the room, which all set up looks lovely if small. I had a lot of judgement about how far along some residents were then realized: they are ok; safe. The whole floor is like one big home with a living room, dining room, and other spaces.

One resident was in the music/cat room and a staff asked if she was looking for the cat. She said “no, im washing my hands before supper,” and in fact she was trying to wash her hands in the cat’s water fountain. The staff said “oh, what a good idea! Supper is soon. But lets go over here to wash up” And guided her away. That is no different than what I would do in that situation. It does seem warmer there. I know there will be problems, but this is the right move. Also my mom is being kicked out due to her increasing needs, so it’s not like there was a choice.

I love the metaphor of first time parents because i truly am one! Glad i am finding support here and with friends.

kblau

weighing in to say - take their furniture. We moved my mom’s bed in and it confused her. Made her think she was still at my sisters.

Anonymousjpl123

Update: move is done. Overall the move was extremely smooth. She did NOT want to leave her current place, which breaks my heart, but we did it. We used the new place’s furniture and everything was moved to my place. We took some photos and photo albums but not the rug, chair, etc. I did get her some new sheets and a blanket.

Well thank god. The day was easy - niece came, we had lunch, enjoyed outdoors - but it is so weird. As expected she sees everyone there as “old” and “with problems.” In the afternoon, after a nice coffee with her roommate, another lady, and the dog outside, she said “lets go home,” and proceeded to tell everyone it was lovely to meet them and have a nice life. She kept saying it was time for us to leave, and when i said she was staying she said “no I’m not” and it was downhill from there. I asked if I should bring up the rest of her stuff (what little there was) and she said “no, nothing.”

Previous MC was very laissez-faire. This place the nurse saw her escalating, me about to cry, and gently pulled me aside and said “we got her from here,” and ushered me out. They said she would be ok.

Logically, I know this is the right move. Mentally, I am sick to my stomach.

M1

Sounds like it went as well as could be expected, truly. Hopefully she'll indeed be in better hands.

Anonymousjpl123

@M1 thank you. I truly hope so. It was hard to leave her but a good night sleep cleared my head. I really think it will be ok.

mrsabaldwin

So glad it went well! What I discovered having mom here at my home is that for my mom as the dementia progresses, the need for personal items that made her feel at home when she first moved in is decreasing. Mom has not lived in California for 30 years but that’s where her mind is most of the time. Other than pictures, mom did not have furniture or knickknacks or clothes from 30 years ago. So favorite blankets and throws and pictures are the best way to personalize in my opinion. Something that was recommended to me was framing copies of pictures and storing the originals. That way if something is broken or lost, it was a copy and not the original.

Anonymousjpl123

@mrsabaldwin thank you so much. It is so hard because she feels i put her out to pasture. The people where she is are farther along in their dementia journey than she is in some ways, but not in others. This is where she was placed.

I wish to god I could keep her home because in my house i feel everything would be familiar. I don’t think she would care as much if she were in my home. Last night she didnt want any photos or pictures because she wants out.

I am going tonight for a short visit and really hoping she is ok.

harshedbuzz

@Anonymousjpl123

It will take her some time to settle in with her new team.

A couple of thoughts—

1. Almost all PWD lose a sense of the familiar as the disease progresses. There have been members here sharing stories of their LO begging to "go home" while standing the living room of the home they've lived in for 50+ years.

2. Do you typically visit in the evenings? Many PWD sundown or have more issues with emotional regulation later in the day. Perhaps a visit around lunch would be easier on you both.

3. While dad was oblivious to how progressed he was in his own dementia, his spidey sense about those around him was spot-on.

4. It may be best, for now, to ghost mom when it's time to leave. I know it seems awful, but getting her set up going to an activity/meal or excusing yourself to go to the bathroom is generally less stressful all around.

HB

Anonymousjpl123

@harshedbuzz: thank you for these tips! So helpful. All of these are now in my pocket, if you will.

Everyone has been so incredibly supportive i will give one last update. I went tonight after work to drop off a few things she hadnt brought in (nightgowns etc).

It was night and day.

She was in the living room interacting. The staff were so incredibly kind. I watched them and how she treated her re: toileting and almost cried. She made a friend. By the end of a one hour visit she was tired, we were in her room, and she said “this room is actually lovely.”

All my worry, stress. She seems to feel more relaxed because she knows she is getting a MUCH higher level of care.

psg712

So good to hear!! That warms my heart. Really glad for you.

Anonymousjpl123

@psg712 it was such a relief! Not just seeing her but the staff and their ability ti work with her.

housefinch

That’s great news! You are definitely due for some relief from stress. Very happy to hear it.

M1

I think there's a lesson here for others too who fear that their loved ones aren't ready for the higher level of care. Better too much than too little.