Small win?

M1

My partner actually went outside today at her new MC, tidied up, and watered the flowers. I’ll take it. Have to give her A for effort too: yesterday she snuck into the nursing station while it was unoccupied and made a stealth phone call to me (saying of course she was ready for me to pick her up). I didn’t get the call, went to voicemail, but she’s clearly not giving up. Have to laugh, she’ll keep them on their toes….

Jeff86

Scale changes with AD.  There are no small wins, only big wins!

Meaningfully symbolic that your partner watered the flowers.   A sign of adaptation, the snuck phone call notwithstanding.   

Joydean

M, Jeff is right, any win is big!  I love that she cared enough to water the flowers. Sorry I couldn’t keep from smiling when you said she sneaked into the empty nurses station and called you! I’m sure they had all meds behind lock and key. You just can’t keep from admiring her!  Thank you for sharing.

Stuck in the middle

Sounds like she's adapting really well.  It wouldn't surprise me if she rewired the thermostats to cool her room and heat the administrator's office this summer!  Thanks for sharing your good news.

toolbeltexpert

Sounds like a win column check, so happy for ya M1

Ed1937

No small losses, no small wins. Glad you got one. Hang onto it.

Pam BH

That's a huge win for both of you. So glad it happened and lightened your day

Jo C.

A very good and lovely win!   Must have felt wonderful to hear the unexpected happy report.   

J.

shardy

I read this and thought not a small win, that's a big win.. Any win is a big win.. Then read the replies that basically all said the same thing.. funny how it seems we have all learnt to think alike..

M1

Another wrinkle today though:  I got called in to pick up the home meds they had asked me to bring on Tuesday....and the nurse told me they think she is in fact too high functioning for the unit she's on, they are thinking about suggesting moving her to another facility.  Haven't heard it officially yet.  But oh brother.  I'm bracing myself....seems like nothing is smooth here.  Anyone else had this happen?

Ed1937

M1, I'm sorry it's so hard to get anything to the point where you can expect long term care without moving her. If she is functioning well in the environment, maybe you could point out that she could, in fact, be an asset to the facility because she could get others occupied with their time, and it would seem like a win-win for them and you. It won't hurt to have them think about it.

Marie58

M1, I liked your OP but sorry about the wrinkle. Mayor Ed has a good suggestion tho.

SusanB-dil

Hi M1 - that is a win.  and hoping you are settling down a bit, now, too...

also hoping you won't have to move her.

Beachfan

M1,

Is the other facility (proposed for the possible move) on the same grounds where your partner is located now? My DH is in a cottage, one of two residences for patients with Alzheimer/ dementia. (Same layout, same number of residents, same trained staff go back-and-forth.) A caregiver with whom I have become friendly told me that the residents in the “other” cottage are further progressed than in DH’s cottage. When we toured the MCF, I was asked which cottage I preferred; there was no discussion regarding the ability of the residents.  It does sound as though your partner is functioning at a much higher level than anyone with whom I’ve come in contact at  DH’s MCF. (The sneak phone call was a dead giveaway.) Maybe, as she settles in, this won’t be a big issue and it will all work itself out. Best of luck. Don’t worry about something that hasn’t happened yet.

MN Chickadee

Oof, I would be wary of moving her again at this point. My mother was the highest functioning at her facility. Until she wasn't. And it wasn't a problem that she was higher functioning (after the early adjustment period.) She had nice chats with the staff, she helped pass out materials for activities and set the tables for dinner. She seemed to like feeling like she was taking care of people and chores, being the useful one. Eventually another higher functioning lady moved in and they were two peas in a pod for a while until mom declined. The skills of the other residents ebbs and flows. Often people think if the other residents around our LO were higher functioning it would work better, but the reality is they all have dementia; they aren't going to carry on conversations like cognitively normal people or have the people skills we want. There is one facility near me that is a middle level of care on its campus, kind of an in between AL and MC but it is technically memory care and people are early in the disease. I can see the appeal, but still not sure it would be worth the upset of another move. And people don't last long in it, they move on to more care pretty fast. And then they are waiting on a bed in the unit that can meet their needs. Things can change so quickly with dementia. Tomorrow something could happen you weren't expecting and you may be very glad she is where she is. I'd see if the place has some good reasons to want to move her and think it over carefully.

M1

I'm with you Chickadee, I really don't want another move.  I'm hoping I can visit or at least have more phone contact this next week.  The silence is deafening at the moment.  I feel very sad, very bereft, very alone.  I imagine she must feel the same, but perhaps that's projection.  At least I have farm chores to keep me going.

GothicGremlin

Your first post in this thread sounds like a big win to me, M1.  It sounds like she's starting to adapt, which is great.

I'm with MN Chickadee on the follow-up. I hope she doesn't have to move. My sister Peggy seemed to be pretty high functioning too when she first moved to memory care. She was the only one with a phone (and could still mostly use it).  We had stripped it down, no internet access, no email, or anything like that. She could still turn on the TV and she knew what channel to turn on to watch her favorite TV show. She could be word salad-y, but mostly she was coherent.

Within months that all changed. After many pocket dials to people on the white list and misplacing the phone many times, I took her phone with me in Dec. (to "fix" it), and never gave it back, and she's now forgotten all about it. She can't figure out how to turn on the TV, and has now forgotten that she even has one in her room.  When I go see her I don't stay more than 20 min or so because it tires her out. Phone conversations are tiring for her as well. I've found that I've really changed my vocabulary when I'm with her (short sentences, short words), and I now leave my snark at the door (she doesn't understand my good-natured sarcasm anymore).

So, 5 1/2 months, big changes.

All of that said, Peggy's done well in memory care. She's a lot more calm, and she loves the staff.  I think it's because the environment is so much more manageable for her.

I hope things smooth out for your partner and that she continues to adapt.

jmlarue

M1 - Is it possible that the facility's definition of "high functioning" is that she is not at the point in either her medicated state or disease process to be unquestioning and compliant? One of the reasons I'm having difficulty getting a spot at a Veteran's home for my DH is because he is "high functioning" to the extent that he is still capable of attending to most ADLs with moderate prompting and is not regularly incontinent. Of course, they minimize the fact that he is: angry, argumentative, aggressive, 100% contrary and non-compliant, delusional, and paranoid. His rantings are little more than word salad laced with vulgarities and threats. Big problem for any facility, but not a problem for his self-sacrificing spouse/caregiver. Left unchecked, he'd be: driving, climbing ladders up to the roof, playing with the chop saw, mowing the lawn, overdosing on medications, or digging burnt bread out the toaster with a fork. That's just for starters. I'd love to shove that "high functioning" label up someone's kazoo. Pardon the rant, but I'm near the end of my rope, just like you were a couple of weeks ago.

Jo C.

That is indeed projecting.

Best not to imagine too much before you speak to the supervising staff involved on Monday.   It may actually turn out to be a positive, especially if still on the same campus.  Remember, they were going to be taking her to, "the other side," to a different group to engage her in a couple of higher level activities each day.  It may be that they can keep her more stimulated and engaged in such a change.  They needed time to assess their new resident in depth after admission and they have now had time to do that.  They are experienced in this, so perhaps this will be a positive. It is about what is best for her, and that is the priority.

If it is not a positive, then you can advocate.  Not making those phone calls at this time per staff advice - best to continue to let the staff be your guide as the calls appear to be a trigger at this point.  You do seem a bit calmer and am glad that is so.

J.

Jo C.

I am thinking of you.  Today is the day that you will be able to speak to the folks at Memory Care to find out the details regarding their proposed care plan move for your Partner.

Sincerely hope that it turns out to be a positive in your Partner's best interests.  Will keep fingers crossed for this and am sending best wishes your way.

J.

Joe C.

M1, I glad you were able to find some positive development, you have had a difficult transition for sure.

M1

Two things today:  Most importantly, I am invited to come for my first visit tomorrow.  I must admit I'm apprehensive.  I'll take a treat, I'll go before lunch so that there's an endpoint.  I'll try to go to the courtyard, though it may be raining.  Any other input from others, I'd welcome it.  Almost certainly going to be painful.

The other thing:  I cancelled her cell phone account today.  I remember when she got it in the mid-nineties.  Felt like a death of sorts.  Vanishing trace of a life.  I'm so aware of her slipping away from me.  Memory care doesn't feel good at this point.  Maybe it will get better, but I just feel her absence everywhere.

Ed1937

That's not hard to understand. Try to visit while putting a good focus on everything for both of you. Force yourself to focus on the good stuff because our brains are hard wired to focus on negative things, and that's not good. That doesn't mean we overlook the bad things, and become inactive on them. That just means after that part is over, we need to see the good things. And while it sometimes feels there are none, if we look hard enough we'll find some. Guaranteed!

Quilting brings calm

M1-   I’m glad you get  to visit tomorrow.  And yet, I am sure it will be painful to visit also.  Be prepared for any of  several reactions.  I wish my parents assisted living was back to allowing visitations in the common areas.  We still have to go directly to and from their apartment  and nowhere else.  

I know that having  your spouse leave your home for memory care cannot be equated to the last offspring moving out of your home.   And yet the closest verbiage to describe it is still empty nesting.   You’ve been your wife’s parent/ caregiver for some  time now.  It’s to be expected that you don’t know what to do with yourself without her there.     It’s going to take some time ( as in months) to get used to the solitude.   If you can afford it, try to go out for one meal a day- with or without a friend.  

Jo C.

Ed gave very good advice.  Under the circumstances, it is easy to feel and place anticipatory negativity into our thinking when there are such regret filled emotional dynamics.  That is part of being human.  Things just could not have continued as they were; there was danger for the both of you.

There is certainly grief one feels regarding such a situation; we mourn our deep loss and what will never be again. Grieving is normal; it is a very lonely place within the heart and I am sorry for the pain you are feeling. When a successful transition is processed and adapted to when a few months passes, and it does take weeks into a couple of months time, it will get much better and you will once again feel brighter and have smiles and laughter and some of that will be shared with your beloved.   Truly.

Sure do understand what you are feeling.  I remember my first visit after my LO was placed. I do not think many of us find that admission and first visit easy - it just isn't - try to remember that this is part of the process even though it doesn't feel like it. There is also a period of adaptation for you as well as for your Partner. It does not happen overnight or even within days or a week. It often takes a couple of months.

M1; I had such dreadful anxiety approaching the front door of the building on that first visit; I could feel my heart pounding - what was going to be facing me?  Also inside of me with everything else was the actual guilt I felt at having made the placement; that for me was a big one.  I even worried about getting verbally blasted by my LO.  It wasn't as bad as that.

As far as suggestions; you are smart in visiting before lunch which will give you a shorter first visit and a graceful exit.

I would suggest however, not going out to the courtyard if it is empty and no one else is out there.  I found that my LO acted out and carried on if we were alone either in the room or at a space where no one else was.  I ended up visiting at a table on the side of the activity room so there were always people walking in and out, etc. For some reason, this kept the negativity at a much better level.

Be prepared to pull excuses or fiblets out of your pocket as needed and remember refocusing strategies, and if things go floridly sideways and cannot be refocused in a reasonable amount of time, excuse yourself and leave.  Another day will be there for another visit and reinforcing a meltdown is not therapeutic for either of you.  Staff can be helpful.  If you need an excuse to leave if she demands you stay for lunch, a fiblet regarding a meeting or appointment should suffice.

IMPORTANT:  The most important thing in all of this is no matter how you feel inside yourself, you will be the barometer for the visit.  Our LOs can intuitively recognize our emotions.  Try to keep your body language, tone of voice and expressions positive.  If you feel yourself beginning to tear up or losing control of your emotions which would not be good for her, just excuse yourself to use the restroom until you find your equilibrium.

If she feels upset and tells you she wants to go home; be prepared. Empathy and kindness is one thing, but you will need that even keel.   You are an intelligent person and have spoken to many patients over the years and have good social and people skills; you can handle this.

I send the very, very best wishes and high hopes your way; you are a loving person who deeply cares, she is blessed to have your care and advocacy.

J.

Jo C.

Thinking of you today and hoping for the very best for you.

J.

toolbeltexpert

M1 Thinking about you this morning, praying your visit goes well.

M1

Thanks TBE.  It went okay.  I took her fried chicken wings from Publix, and peanut M&M's.  She said she didn't know I was coming, but--I think she did, the staff said they had told her; and she had completely dismantled her room thinking that I was going to take her home.  That was a little disheartening, but I guess they can put it back together.  She literally had everything packed up and sitting by the door, had unplugged the lamps, taken the pictures off the walls, stripped the bed.

The adjustable bed frame I bought her did not fit, still sitting there in its box.  No one had bothered to take the plastic off the new mattress, just put the sheets on over it.  Don't know what to do with the frame, as it is very heavy.  I'll cross that bridge another time.  I guess I can see if the furniture store will take it back.

But the positives:  she was glad to see me, not angry with me.  Doesn't know where home is any more, clearly, asked me which house I was living in.  Said everyone was being nice to her.  I think she's still isolating in her room most of the time, eating her meals alone apparently.  

It's just going to take a long, long time.

Ed1937

M1, I'm glad you had some positives. That is huge! Hope things continue to get better. Any more word on them wanting to get rid of her because she's so competent compared to others?

Jo C.

Glad it went as well as it did; especially that she was not angry with you.  And what a great treat - chicken wings AND peanut M&Ms! That is definitely a winner of a gift.

In her life, she has been so very talented and as a construction owner, she was in all probability highly organized and got things done in detail; that seems to still be with her ala the details in packing up her room.

Thank you for sharing with us. I too am remembering you and her in my prayers.

J.