Memory care and progression - need reassurance

Anonymousjpl123

Can someone please remind me that moving my mom to MC did not speed her progression? From the time she was diagnosed with NPH and dementia she had progressed so quickly. It’s still a shock to me. Every day she gets worse.

I moved her to MC in October. The truth is I moved her from Asst Living because her progression there had been dramatic.

But now it is getting so much worse every day. She is so confused. She says things like “I’m watching things go by” when she’s talking about letters on a page. She thinks there is someone impersonating me on her phone (I had added daughter to my name) and is in a frenzy. She thinks people have left who haven’t; she told me today she is “leaving town.”

God I want to believe a misstep on my part hasn’t caused this.

SusanB-dil

Hi Anonymousjpl - I sincerely don't believe you got it wrong. As you state - her progression had already been dramatic prior to the move. So it sounds like she was already on that slide.

And now she is where there is 24/7 care and you can still be her advocate. She is blessed to have you.

M1

It wasn’t you and it wasn’t the move. She’s in the right place.

Emily 123

Jpl, she needed more support. She may have just been barely hanging on and able to showtime. It would be worse if she was at this point and you were waiting on a MC bed. I think you’ve done right by her.

Quilting brings calm

It wasn’t anything you did or decided to do or didn’t do. Some PWD progress faster than others. Some PWD showtime better than others. Caregivers who are doing the heavy heavy lifting are like frogs in a pan of water heating on the stove - too darned busy to notice that the water is getting hotter. You aren’t as busy or as stressed ( not to say the stress is gone) so now you can see her actual condition each time you see her

Anonymousjpl123

Thank you all. She calls with urgent messages all the time, and but I’m not quite ready to do that because she still has one old friend she talks to and I want them to stay in contact.

The easiest solution is to block her calls while I am at work. I forget, and then around this time when she’s sundowning she calls a million times in a panic.

she is still able to go out once a week, and she’s still one of the higher functioning people there, which is hard. But I also know it’s where she needs to be (she sometimes tries to get out per staff.

psg712

It's not the move. It's the disease.

My mom moved from her own home to AL less than 2 years ago. People asked if I felt guilty making her leave her home, friends, etc. Once she got here, the only guilt I felt was that I hadn't done it sooner - her incapacity to function in day to day life was so evident when I got her closer to my home.

Today I look back at her early days in AL and am shocked at how fast she has progressed. She went into MC this week, and it was high time. There are people who love her who think that she declined because she was "put in a home". Their misjudgment is hurtful to me, but I know they are mistaken.

I think that our fear of what the disease can do makes us pretend that there is something about it that we can control ... for example, that if only I hadn't moved her to AL or to memory care, her mind would not be this bad. So we take on the guilt to avoid the stark, soul- chilling truth that this decline, in this disease, is inevitable. I can only stand on faith that God is for us, and that she - as a whole person- is safe in him.

Anonymousjpl123

@psg712 you literally brought tears to my eyes. That is just what I needed to hear, exactly how I feel, and makes so very much sense. Today I realized this is the best possible situation she could be in. I’m actually grateful for the choices I’ve made because when I block the phone, I am not terrified of what might happen. And for her, it’s actually much better.

I’ve been thinking about how while it’s true she may have been ok in AL for a few more months, it also could have ended in disaster. And at least now she doesn’t have to keep moving again and again. You mentioned about those who question you “their misjudgment is hurtful to me, but I know they are mistaken.”

I feel the same way, but doubt myself sometimes. This helped so much.

psg712

@Anonymousjpl123 I am so glad. I have gotten so much insight and encouragement from reading others' posts here. I do sometimes feel sad that my mom is in MC now, but mostly I feel relieved. She is getting the care that she needs. I'm glad that your mom is getting it too. Blessings on both of you.

housefinch

I think also unless you truly test someone’s cognitive abilities, you don’t see their deficits necessarily and the scaffolding you provide unknowingly. I think everyone probably does this and has no idea. For example, my mom says that my stepdad can socialize with other residents at their CCRC without any problems. (They live together in IL and he has moderate dementia). I am really surprised to hear this, given his limited conversation skills last time I visited. But my mom sees him saying “Hi, how are you? I’m great, thanks!” and then turns to my mom and has her answer anything about their social life, plans, etc. Also, many husbands of their generation look to their wives to answer those questions anyway, dementia or not—-so maybe it isn’t as evident. 18 months ago he overwatered their houseplants so much they all turned yellow, because he couldn’t remember he had already watered them. He unloads dirty dishes, has daily incontinence, etc. My mom truly doesn’t see it. However, he also showtimes incredibly well and I think that lulls her into thinking he has mild symptoms. I think he shouldn’t be left alone and would need MC if something happened to her. I applaud you for ensuring her safety. You avoided a crisis situation where she could have been hurt, in pain, alone waiting for help, etc. Be proud of yourself for caring for her appropriately, even in the moments when she looks like she fleetingly didn’t need it yet. Her behavior is saying she did.

Anonymousjpl123

@housefinch thank you so much for the important perspective.

Your mom sounds exactly like my dad was before he died. He was worried about my mom, but couldn’t deal with it. Looking back, he was either in deep denial or knew and didn’t let us kids know (of my parents, he was the nurturer and I’m forever grateful to him for that). And he really was able to provide the scaffolding she needed, although in hindsight he was shouldering so much more than we knew.

While your stepdad has her, as long as she is not suffering, I think it’s fine she carries him.

As I write this I am lying in my mom’s dark room in MC because she is tired but feeling unsettled and doesn’t want me to leave just yet. Her sundowning has been fierce lately. I met with the staff and their sense is she is transitioning into mid/late stage 5 and it’s hard. I read the stages and that is 100% where she is. It’s easy to forget on her good days, which are becoming fewer.

But on nights like tonight, when I can just be with her and not stress, because I know she’s safe and the staff know what’s going on, I thank every god and goddess that I had the sense to move her when I did. She is so disoriented right now but she knows who I am and that I am here. She’ll be better tomorrow hopefully. But she is safe and in a beautiful space surrounded by her most cherished things, and I can comfort her because I’m not full of stress.