Where we are now

GothicGremlin

So, here we are.

Peggy is now later stage 6, and it's been eleven months since I placed her in memory care. There have been no cliff dives since she moved there - thankfully. It's been gentle slow slide downward since the end of last October. I know it's only temporary, and I'm always looking up and over my shoulder for another shoe to drop, and even then, when it falls, is it a tennis shoe or a stiletto that's about to land on my head?

The biggest thing I've seen is that she can't comprehend compound sentences anymore. When I speak to her now it's only in simple sentences. She just can't remember the first half of the sentence once I'm done speaking the second half. If I ask her a question, I always have to make sure that the answer is 'yes' or 'no'. No open-ended questions. Even then, I'm not always sure she's understanding what I'm saying.

Her ability to speak is quite damaged now. Maybe it's the Alzheimer's, maybe it's the Primary Progressive Aphasia, maybe both, but there are so many words that just aren't there anymore. She falls back on her "I don't know how to say it", or "...it won't come out" much more frequently. Or, when she does get the word out, it comes out as gibberish. It'll sound something close to the word, like "kays" or "sees" for "keys". Usually I can figure out from context what she's trying to get at.

Her world has become so small now. We only talk about close family members, her close friends, and daily life in memory care. We stopped talking about current events long ago. I thought about bringing up the death of Queen Elizabeth, but I'm not confident it would mean much, if anything.

She knows her birthday is coming up, but she doesn't know the exact date anymore (she hasn't known it for awhile now), but she's said to me a couple of times recently "I'm coming up."

So yeah, much suck-age and sadness, but at least we're moving somewhat slowly right now (knock on wood).

I get out now more than I did before Peggy was placed, which is nice, but I'm still worn out. For me, right now, the emotional burden is feeling heavy.

I'm not even sure why I'm writing all of this out. There is no crisis (for now), it's really that it's all just sad.

M1

It is Indeed sad, GG. I am glad to hear from you regardless. You have been an incredibly loyal and loving caregiver to Peggy, so hard to watch the slow decline. Im glad you posted, we do care.

Quilting brings calm

GG. - I’m sorry to hear of her progression.  

My loved one is in assisted living. I have come to realize that being an off-site caregiver still comes with a lot of responsibilities and emotional turmoil.   You still see the toll the disease  takes on your loved one  and it still takes a toll on  the caregiver to see it. Yet there’s nothing that you can do to change it.  

buckeyenut

GG I can totally relate to how you are feeling. It's been a long 5 years with my dad! In March my dad was placed in MC. I just want this nightmare over for him and it makes me so sad!

SusanB-dil

Hi GothicG -   ((hugs))

I know - we hate 'this'!

Oregano

That sort of gloomy, somber feeling is one I'm sure ever caregiver can relate to. If you want a ray of hope, something that may help improve Peggy's symptoms, I highly recommend you look into anti-fungals. Mold in the brain may very well be the dark secret behind Alzheimer's. Personally, I have seen a lot of mental benefits from taking a combination of NAC + oregano oil (capsules) + black seed oil, but there are plenty of other natural anti-fungals out there.

Even if it's just something as simple as adding a drop of rosemary extract to her tea, you might see very real improvements very quickly. God bless!

Tfreedz

Thank you for the update GG, sometimes just getting it out helps with the sadness. You’ve been a great sister and we all know how difficult this has been for you!

mommyandme (m&m)

Gothic, glad to read you’re on a level path if even for a minute.  Thanks for your update!

GothicGremlin

Thank you. All of you.  It means a lot to me.

I think part of the reason I'm feeling burdened is because Peggy's birthday is close - her first one in memory care, and she'll only be 63.  This is not at all what I wanted for her.

M1, thank you. I know you're in a tough spot too, and I'm sending you all of my positive thoughts.

Quilting and buckeyenut - just because we're not "on site" doesn't mean we have no responsibilities, we do. I don't think any of us here are the "out of sight, out of mind" types.  I'm also well aware that we caregivers often die before the ones we care for, so I'm trying to look out for my health.

Thanks, Oregano, maybe I'll experiment with infusing her water with rosemary.

(((SusanB-dil)))

Tfeedz & m&m - thank you. Sometimes we all just need a buck-up, you know?  I'm feeling more bucked-up now.     And I do think about what's happening now, and try to live in this moment where there is no crisis. It's a mostly level path right now (crosses fingers).

May flowers

(((Hugs)))

SonShine Lady

Hi GG!!  

I haven't been on much but soooo good to see an update post about how Peggy is doing.  You two have such a special relationship and that has to be comforting to Peggy.

I thought about bringing up the death of Queen Elizabeth, but I'm not confident it would mean much, if anything.

Pretty much the same with my mother and news.  She has a TV in her room but never watches it and says she's not interested.  At her home the TV was on most of the time.  I asked her if she wasn't sure how to use the remote control and she said she just wasn't interested.  One of her brothers who lives in another state passed away last month.  Step-father said he didn't see any benefit in telling her as it would likely only upset her and he didn't see a positive side. 

I visited one time in the morning and, instead of being in her room, Mother was in a sitting room area on the main floor and a TV is always on there.  The "Golden Girls" was on and she commented on the clothes some of the ladies were wearing.  When Betty White was on screen I did tell Mother that she had passed away shortly before her 100th birthday and that seemed to connect.

Glad to hear you're getting out more.  Sending {{{HUGS}}} to you and Peggy.

2Ts

Hi GG, Thank you for sharing. I’m new here. My mom was diagnosed in 2020 but she had had a stroke in 2009 (at the age of 59) so I was already partially taking care of her while she was living in her own home. And in some ways had mourned the loss of my best friend, a couple of times after her cognitive and physical ability drastically changed, then. 

As her full time caregiver, in my home (which I remodeled for her care and comfort), I often have to remember, I, nor she, has any control over this horrid disease. And there are so many times I feel alone. Reading your post broke my heart but All I wanted to do is just give you a hug and encouragement. You are a phenomenal caregiver even though Peggy is in a MC now. I hear the way you’re adjusting for her by any means necessary. I see that in myself. 

Just today I was in a rut and decided to sign up and read about support for caregivers of Alzheimer’s loved ones. Saw your post and weirdly could only think of praying for your peace. Which took me out of my rut. Because I’m not alone in this and neither are you. And again, thank for sharing.  

GothicGremlin

SonShineLady - so good to see you!  It sounds like your mom is doing well.  I think I agree with your step-father - why tell her?  We're in a similar position.  My very elderly uncle is in hospice now. He's my mom's brother, and we've always lived in close proximity to him and my aunt, so we're close. We've all decided that none of us are going to tell Peggy when he passes. I pretty much only share good news with her now - I just never know what's going to make her teary.

2Ts - Thank you for your kind words, they mean a lot.  And welcome to this place.  I'm so sorry about your mom - my sister was the same age as your mom when she was diagnosed.  That's just way too young.

You sound like a wonderful caregiver yourself. And you're absolutely right - neither of us are alone in this.

buckeyenut

GothicGremlin wrote:

Quilting and buckeyenut - just because we're not "on site" doesn't mean we have no responsibilities, we do. I don't think any of us here are the "out of sight, out of mind" types.  I'm also well aware that we caregivers often die before the ones we care for, so I'm trying to look out for my health. 

Hey GG 

you are right "out of sight,out of mind" isn't our type my dad is constantly on my mind..the only time I "forget" about him is when I escape every other month out of town. 

Today, my husband visited with me after a rough week with dad..he was like wow I haven't been to see dad for over 3 weeks.. I calmly looked at him and said it's been at least 6 weeks or more. He was like you are right.. I now know why you have to go away next week! We have to take care of ourselves! 

Hang in there!! 

toolbeltexpert

GG it's good to hear your update from you, sad are all the slow losses, I am just starting the mcf road.