Coping with disease progression

Anonymousjpl123

My mom is in a good MC receiving high quality care. Before that she was also in a good AL/MC, albeit one not equipped to deal with more advanced dementia. Now, I find myself watching my mom progress and filled with sadness. She is comfortable, clean (a miracle, given that she has a lot of incontinence issues), and still engaged. But she sits with the folks who are further along in their journey. She often doesn’t make sense. She’s moving I would say from late stage 5 to stage 6. And I feel awful.

I’m trying to get her a larger room, although she doesn’t complain about her minuscule room now. I find myself on the verge of tears going to see her sometimes because I can’t take the changes. Family members have visited and report she seems well and the staff are kind. But I see the changes.

I don’t want to dwell on the negative but can’t deny this disease is taking its toll. Ideas?

Quilting brings calm

I wish I had some ideas. Mom is moving from stage 5 to stage 6 too. Which I find hard to deal with because she kind of blew through stage 5 without stopping. Hang in there.

easy23

It sounds like your mother is well taken care of in MC. My DH also sits with folks who are further along in their journey and he doesn't notice. I try not to think of all of the negative and be thankful that he's not at home wearing me down. It's great that family members are giving you good reports. I would consider a therapist to help you through your emotions.

Emily 123

I know you want to do something for her, but will another move be meaningful for her? I say this because Mom's in rehab and I think she actually finds the smaller room more comforting. I don't think she'll recognize her MC room that she moved to in February IF we can get her back there. It's like she's a rock in the middle of a stream, and everything moves around her, but doesn't affect her. The minute I'm out of her line of sight I'm gone, and I'd say it's 50-50 if she can tell it's me (by my voice, I suspect). What can you do for YOU to help get you away from spinning thoughts for a bit? I've been doing walks. I totally get feeling like you want to come up with something…

If I don't go I spend all my time feeling guilty, if I do go there's not much interaction, though she likes it, though last week she thought I was staff the whole time and was in a pissy mood. It's just so depressing to go sit and watch her world close in.

fmb

The only reason I would consider a larger room would be if it appears that she is going to need a large Broda chair and/or a Hoyer lift. My DH is in a medium sized studio room (no kitchenette) with a hospital bed (twin size width), a Broda and a Hoyer, a large dresser, small nightstand, and wingback chair for guests. There is plenty of room. In general, the room is only for sleeping, and residents are encouraged to be out in the common areas for both socialization and to make it easier for the staff to keep an eye on everyone at all times.

psg712

Anonymous, I relate to your sadness at seeing the progression. I am also happy most of the time with my mom's MC facility and grateful for caring staff. But the disease marches on. I also relate to Emily's description of the rock in the middle of the stream. I agree with not moving your mom, if she's not complaining about the small room.

Virtual hug. This is hard.

harshedbuzz

@Anonymousjpl123

Dementia is a gut-wrenching way in which to lose a LO. I am sorry for the place in which you find yourself and the feelings that place elicit.

A couple of thoughts.

It sounds as though you have chosen well in terms of a MCF given that you mom seems mostly content and that family members who visit agree that she's being well cared for.

Dementia is relentless and it always wins. You can't arrest your mom's decline with a larger nice room or the companionship of residents who only mildly impaired. There is nothing you can do but continue to ensure her continued care at a high level and love on her.

And with all due respect to a fellow daughter, your mom isn't moving towards stage 6, she crossed over that line with incontinence.

Measure and Manage the course of AD using The Functional Assessment Staging Test (FAST)

HB

Anonymousjpl123

This is why I love this community. There is no one - and I mean no one who understands this like those going through it.

@quiltingbringscalm yes! Stage 5 seemed to go by in a blink.

@easy23 I am definitely grateful that I don’t have to do this alone. Or at my home, with no one else here. I try to find moments of gratitude and sometimes do, but other times it just eats me alive to see my mom having to slowly disappear. Thankfully I’ve been in therapy for years with an amazing therapist so that has been a life saver.

@emily123 you absolutely nailed it. Like - nailed it. I’m so sorry your mom is in rehab - had missed that chapter. That analogy of a rock and a stream is spot on. The guilty for not going/not quite engaging is spot on too. My mom still knows me, but it is fragile. My sibling saw the decline and when we talked about it, it hit me too - even though he agreed she is receiving much better care.

@fmb it’s funny you say that because that is exactly why my mom hasn’t gotten a larger room - staff let me know there are others who do need hoyer lift/broad chair who got priority. That makes sense to me. My mom actually still walks on her own, which is amazing!

@psg712 you’re right - we’re not gonna move for now. She seems ok. She knows where she is. She is comfortable (except for the clothing/briefs situation which is a work in progress). Truly this place is insanely good. I don’t know how they keep her room so clean, and they just know how to do this: example, it was genius that they took away all of her clothes. This has drastically reduced the soiling/hiding situation. I hate that you are going through this too but glad we can commiserate!

@harsherbuzz yes: I am utterly relieved where my mom is. It is a boulder off my shoulder seeing people farther along than her receiving responsible care, with dignity. You are so right: I AM imagining that the larger room or less impaired people will slow this thing down but it always wins. It helps to let the sadness out. Wow - I hadn’t seen that staging tool. Based on that she’s been in stage 6 a while. I’m always a few stages behind.

On a positive note: the other day when I visited, I brought Thai food and we ate it while watching law and order svu in her room and she loved it. I did it more for myself than her, but I think she liked feeling things were “normal,” even if she didn’t eat the food or understand the tv show. I think I’ll make it through. I don’t want to “check out” because it is so hard, but it is so hard.

Thank you all for such thoughtful responses. It really helps.

CaliforniaGirl-1

I agree with the don't move if you don't have to advice. Cross that bridge when you come to it. MC is so expensive, I would defer anything that was going to ratchet up the cost until it was inevitable. You never know when the care levels will increase and over time the physical layout of the room will matter less and less. And you don't know how long it will go on.

I find it helpful to ask one particularly clear headed relative about things like this, "Am I doing this because it is going to make a positive difference for my LO or am I doing it because it will make me feel better to think my LO has a bigger room, fuller cable package (or whatever) and because I am thinking of the LO, that I wish was still here?" The answer is almost always (but not always) that there is a large element of wishful thinking on my part.

Anonymousjpl123

@CaliforniaGirl-1 you are so right: I think it is 💯 about me. I want her to be in another place and time, I don’t want her to be suffering this disease and progressing. The crazy thing is she had her annual neurology appointment (I wasn’t sure she would go, but she did) and two things were true: her physical health (strength, muscle tone, mobility, BP) are better than ever been, and her mmse went down 4 points since Larry year (13 to 9). I don’t understand how this happens.

She’ll stay in the same room until staff recommend otherwise. I guess I can be thankful she’s getting good care and her physical health is good, even as her brain is…

DotBern

https://alzconnected.org/discussion/71154/coping-with-disease-progression

My heart is with you. I, too, like many others, feel helpless and want to do everything in our power to make things better for our LO. It is a journey. One that I'm sorry that we are all on but something we have to come to terms with. I am an only child with a good friend who is supportive and helpful. There was a time that I found many of the things I would do were more for my benefit than truly for my mom's. It made ME feel better to take her out for ice cream and give her a few hours of normalcy and enjoyment. Then I learned quickly how these times were only enjoyed "in the moment" for my mom and would ultimately cause her greater confusion upon return to her MC facility. She would be angry and sad that I was "leaving" her there. Since I stopped my constant, half day visits and taking her out, I'm finding she is less stressed with "wanting to go home" and I am less stressed. It still saddens me to know she is alone and my constant wondering how she is doing or if she needs something. I, too, am comfortable with the staff at her facility. I think they do an amazing job of looking after our LO's but also know that no one will ever take care of her like me. Yet, I know that it's not possible for me to take care of her full time. My mom continues to decline but seems to be somewhat stable at the moment likely in the midst of late stage. She is on hospice since her last big "dip" in decline a couple of months ago. I struggle daily with guilt and worry and am trying to take better care of me as I see the stress causing me lots of physical ailments not to mention lack of sleep. I'm attending my first acupuncture session tonight for stress with hopes to get a handle on my mental health and well being. I'm sending you a big virtual hug as I know this journey is not easy for any of us or our LO's but sometimes think it's harder on us as we have our faculties and watch with sadness everyday our LO turn into something we never imagined. God bless you and your mom.