Reflection on Progression

kblau

I haven’t been here in awhile. Mom is in MC. She’s 73. I have a 5 year old. Husband is away for work. Old pic popped on my phone of my daughter and mom just a year ago. She was in MC then (been there almost 2 years now). I just can’t believe how fast this all went down. In the picture she is smiling with my daughter. Now, she knows she knows me but doesn’t know how. She hardly speaks ever. A couple words. We just had to put her in depends. She keeps taking them off and then no one knows until she has an accident. I can’t believe how fast she went from talking to not talking. From knowing me to not really knowing if I’m my sister or myself and not speaking anyway. This is just awful. I’m always in caretaker mode and maybe that helps with the sadness that my mom is already gone.

caregiving daughter

I understand. I am also so very sorry for what your mom and you are going through.

The grieving process does go on for a very extended time and caregiving can be a distraction. At the same time, it just doesn't seem like our loved ones understand what all is happening. Early on, my mom told me she thought she did not have the A word. She was already in the difficulty with word finding stage and I responded, "okay, good".

SDianeL

so sorry about your Mom. Some PWD have steep declines followed by plateaus. Have you considered a hospice evaluation? They are an extra set of eyes and provide much help and might help with the incontinence issues. Hugs. 💜

psg712

Those old pics can really be a stab in the heart. Like you, I'm functioning in caregiver task mode most of the time when I see my mom at her MC. Once in a while, a pic pops up from not so long ago that highlights the change between then and now. And the sadness breaks through the focus on practical matters. Even my middle school son can see it ... just when I think he's absorbed in his own drama and oblivious to the rest of us, he comments on how much his grandma has changed. Breaks my heart for both of them. Makes me mad that I can't fix it!

kblau

https://alzconnected.org/discussion/comment/268224#Comment_268224

I don’t know much about hospice evals.. what service would they provide with incontinence?

kblau

https://alzconnected.org/discussion/comment/268263#Comment_268263

you said it perfectly. My daughter going thru it with me adds another layer/perspective and heartbreak. 💔

SDianeL

https://alzconnected.org/discussion/comment/268675#Comment_268675

hospice provides supplies & nurses and counseling & clergy for families. Well worth talking to them.

Anonymousjpl123

@kblau we’re on about the same trajectory. I’m so sorry. I hope you can take comfort that your mom is receiving good care that she is declining with a terrible disease but not alone and not in (too much) pain. My mom seems to be about where your mom is and after a very bad fall last year they put her on hospice (about 8 months ago). It adds a LOT of extra services. She was already double incontinent but it pays for supplies (depends etc), extra visits, a care team, and things I can’t even believe (one hospice worker did lavender reiki with her!!).

you may feel like your mom is gone, and she is (the one you knew), but your caregiving is what matters. Definitely hard to see the changes happening, but she’s lucky to have you and your daughter!

wizmo

DW age 61 is in MC 2 years and I have watched similar progression. I visit often enough to have seen some other residents advance to end stages. I will be able to prepare myself somewhat for this. In the meantime I believe my continued presence provides small comfort, and prolongs the time she recognizes me as a familiar person even if the best parts of her are gone.

katiedad1951

https://alzconnected.org/discussion/75590/reflection-on-progression

I feel for you. My dad was diagnosed this past year with Alzheimer’s , he’s 75. The disease is progressing but most days he still seems so normal, then others you are wondering, where did they go. I’m so scared for the harder days to come. It keeps me up at night and my heart breaks. I am sure you are a wonderful caregiver and I totally understand the pain you are feeling. I think a part of me is still in denial that it will get worse. Sending love , here to connect if you wish

Merla

I'm sorry. My mom is 74 and been in MC for a year and a few months. And there is very noticeable progression. Sad. I am having her move out by me to another state and memory care bc she needs closer supervision now. I feel bad I could only see her every few months for the past year and now she is worse and I feel like I missed the better time period. Though I guess with dementia we always have to value the present to some degree bc the disease just gets worse.

What do you tell your 5 year old a lie grandma? Does your child come with you to visit? I have a 3 and 7 year old. I've talked with my 7 year old with grandmas illness and needing help but I don't feel like the conversation was impactful and of course dementia is always progressing so behaviors change. However since my mom will be living by us now, I need to figure out how to communicate to my kids about Alzheimer's.

My kids actually really like the memory care she will be at. We visited a few times with my kids to check it out. They like the pets, snacks and activities. And they don't seem to be taken aback by people.

MaryMN

There are lots of good books to share with children that help explain Alzheimer's. Ask your local librarian or bookstore or check out the list on the ALZ.org website under "Resources to Share With Children."

kblau

https://alzconnected.org/discussion/comment/269405#Comment_269405

My daughter has been coming with me since she was 3, when my mom first moved in. I tell my daughter that she lives there so people can help her, especially in the beginning when y mom would get upset when we were leaving. I recently explained she has a sickness in her brain and so do the others w her. That causes confusion. And if she ever forgets your name it doesn’t mean that she doesn’t know who you are in her heart.

There are a lot of books for kids online and the one thing I’ll advise is to read them all the way thru first to make sure your child is ready for the content.

My daughter LOVES going. It’s like she has a dozen grandmothers doting over her. I hope yours will feel the same way. Side note tho it is soooo taxing for me to handle both my daughter and my mom as she progresses. They want to go in opposite directions.

kblau

Thank you. I know that fear all too well. I think I’ll always be in denial to some extent. The only good thing I can say is that it seems to come and go so it’s like you lose them little by little. Which sounds weird to say but it’s like there’s still a day where my mom comes back to a little bit better than she was. But never like how she really was 6 months ago etc.

SoCo Kirsten

https://alzconnected.org/discussion/comment/269686#Comment_269686

I'm shocked about once a week how the body can hold on when the brain is so damaged. That also makes it hard because my LO still looks mostly OK physically, very incongruous. Hugs!

Merla

https://alzconnected.org/discussion/comment/269684#Comment_269684

my kids also love going bc of the pets, grandmas tv tablet, juice, snacks. What rules do you have for your kid in memory care? Two kids and a parent is a lot to manage while at memory care ia a lot to manage. It's so quiet in her memory care and my kids are so rambunctious and loud relative to the residents. I told my kids to walk not run in the hallways as my really scared my 7 year old could plow an unsteady resident straight over. The building is a square so there are tons of turns and blind spots.

H1235

https://alzconnected.org/discussion/comment/269714#Comment_269714

When my mil was in Al I would visit with my two grandsons (I babysat them at the time). They were baby to about age 4 while she was there. We would often take a walk around the building during visits. It was hilarious. We were kind of like the pied piper with a mob of old ladies following behind us by the end of the walk. The residents loved them! My mil has passed and my mom now has dementia. The boys are in elementary school and don’t visit much. Since they are older now I always worry that any explanation I give them might be repeated back to her. Since she has anosognosia bad, she would not want to hear them say that she has problems with her brain or even that her memory isn’t working. The list of things that irritate mom is long and I avoid these topics at all costs. I worry they will innocently bring one of these topics up or even suggest things that can’t be done. You should come to my baseball game.

Merla

https://alzconnected.org/discussion/comment/269724#Comment_269724

yeah this is also a concern of mine. We will see how it all plays out. My mom is better with my younger child than my older one. And my older one of course notices more oddities and there is the real risk of my mom and daughter getting into an argument.

kblau

https://alzconnected.org/discussion/comment/269724#Comment_269724

ahh understandable. I think we are passed that point.