Some later stage behaviors

GothicGremlin

Yesterday I posted in the general caregivers forum about getting my sister evaluated (and then accepted) for hospice. If I'm doing this right, the link should be here. My rationale for the evaluation is there.

Even though Peggy is very late stage 6 but probably early stage 7, she still knows who all of us are. I think that's the FTD speaking. If you ask her yes/no questions she can communicate fairly well, but you really have to know what to ask.

Peggy's eating habits have changed dramatically. Like I said in the post I linked to, she's lost more than 50 pounds since early summer. Yikes. I'm not sure if it's the progression, meds, or that she's having trouble seeing her plate (her perception was one of the first things to go). Maybe all of the above? She's in between finger foods and hand feeding.

Last December our 93 year old uncle passed away, and my pain-in-the-neck brother decided Peggy needed to know this. She hallucinated our uncle in the dining room for several months. Honestly, she's never been the same since then (not my brother's fault, this was always going to happen, he just hurried it along). Once she got over his death, then she started having bouts of screaming. I don't know why. We've been trying to get that under control for months. Now that I have hospice, the screaming is getting under control.

A lot of times she doesn't know where she is, and questions why she's there.

None of us, and by "us" I mean my small team - my s.o., Peggy's amazing friend M, her kindergarten friend D, and my new hospice team, think that Peggy's happy. I think there's still a part of her that knows something is wrong (she's forgotten that she has AD & FTD), and wants her old life back. I think that's also the FTD speaking. I still try to validate whenever I can and whenever I think she's understanding me.

I think in this small FTD group, Peggy's probably the farthest down the road, so I thought I'd share what I'm seeing with her. I don't know if this happens with everyone who has FTD ....

Jeanne C.

Thank you for sharing. It truly helps to hear about what others are seeing on this journey.

The screaming must have been so upsetting for everyone involved. Isn't it odd how the death of a loved one can impact a PWD? Almost a year ago Ralph's sister called and told him that his cousin died. They were very close as children and Ralph was incredibly upset by the news. The next day, in a severe fit of anxiety and agitation, he exhibited expressive aphasia - like full-on speaking in tongues aphasia. He ended up admitted to the hospital under stroke protocol. Thankfully it wasn't a stroke, but the event did trigger a big jump in progression.

I'm glad to hear that hospice is providing some relief for Peggy.

GothicGremlin

@Jeanne C. - your husband's experience is exactly what happens with Peggy when she's agitated "A full-on speaking in tongues aphasia." She's making sounds, and I know she thinks they're words, but they're not. They're sounds, with the rhythms of speech, but not actually speech.

I don't know if this is common generally with people who have FTD, or if it's only common with those who a particular variant. Peggy also has Primary Progressive Aphasia (PPA) - the logopenic variant. I think this is also what @CStrope 's husband Bob has.

Peggy's doctor told me it's the rarest form of PPA.

GG06

@GothicGremlin reading your posts makes me so sad for you and for Peggy. What you describe happening to her are the things that gave me crushing grief when I was first learning about FTD and how it may eventually affect Paul. It's comforting to hear your experience with hospice is a good one.

Thanks so much for taking the time to let us know what you are seeing in the later stages. It's heartbreaking, but helpful.

CStrope

@GothicGremlin I agree, I think traumatic events such as deaths somehow have a major impact on progression. A year ago we had to say goodbye to our dog that DH loved dearly, and we all noticed a dramatic change in the days and weeks following. Things like that are a major life change and I just don't think they can handle anything that is out of their daily norm. And yes, DH has the same diagnosis as your sister and not a common one! Gee.....lucky us!

GothicGremlin

I just thought I'd make a quick update .. so much has changed since December. I noted the big changes in a post in the caregivers forum - it's here.

We've moved beyond even that latest development. Peggy's still barely eating. At least I'm getting a little Ensure into her. The hospice nurse/care manager and I talked yesterday and he's somewhat dubious that the soft food diet is working for her (I'm with him), and so he proposed trying it for one more week and if it's still a no go, then we'll move to puréed foods. I'm really sad about that.

The FTD part of this is that Peggy still knows what's going on when she has moments of clarity. She's really confused about what to do with food that's in her mouth. She has said - on more than one occasion - "what do I do with this?" This, while the food is actually in her mouth. On one hand, I'm glad she can verbalize her question because at least we know what's going on with her, on the other hand, this is terrible for her.

And that's my big takeaway from this last stage so far - Peggy is still aware of what's going on (at least sometimes), and in moments of clarity she can tell us about it. I don't know if I'm right, but it feels like this is the FTD, not the Alzheimer's.

Stage 7 has been really hard to navigate. It's squishier. In the previous stages I knew when to redirect, when to validate, how to deal with her meds, etc. Now? It feels like we're experimenting more, throwing everything against the wall to see what will stick. And these walls are made of teflon.

Jeanne C.

@GothicGremlin I wish I knew what to say. My heart is breaking for you both. Ralph isn't aware of his illness usually, but the moments of clarity are brutal. I cannot even imagine how hard it is for you both. I'm so glad you have hospice care to help you through this. The squishiness of stage 7 must feel like an itch under your skin - I get the feeling you're a planner like me. Hang on. And definitely use us to vent, bounce ideas, whatever you need.

GothicGremlin

Thanks, @Jeanne C.

Is Ralph still fairly verbal? A lot of times Peggy babbles, or loops in on one thing, but occasionally an almost complete sentence will come out - even at this late date. And it will be on point. I'm always surprised when it happens. My theory is that it's an FTD thing, but who knows? Definitely not me. But yeah, those moments of clarity can be so brutal.

Yep, guilty as charged - I'm very much a planner. I usually have a Plan A, B, and C. With dementia, particularly now, most of my plans end up out the window.

It's not like I'm venting ... it's more me scratching my head and bouncing ideas. I'm trying to figure out ways to make things "less bad" for her - and I'm sure that's what we're all doing. At this late date, I can't make anything good for her, so I'm settling for less bad.

Jeanne C.

Ralph talks much less than he used to. He is fairly verbal, though he loses words, uses the wrong word, frequently misunderstands, and occasionally uses gibberish. And almost none of it is an actual conversation. Language is definitely something that's on the decline. When he seems to know what's going on, it's awful. Fortunately, it doesn't last long.

You're right, I think we're all just trying to make it easier for our loved ones. If I weren't in the middle of it, it would be a fascinating puzzle to examine. But when it's your person's life...