Do people living with Alzheimer’s/dementia get sad?

Anonymousjpl123

Today was a very tough day for my LO. She went to the doctor and was more disoriented than usual - the “cognitive reserve” was down. Even after a meal out, which usually cheers her, she looked like she might cry.

Then incontinence didn’t help, and she won’t wear anything like depends. She looked so humiliated and dejected.

She never talks about memory loss, her struggles. She talks a lot about her age (80s), and that of course she’s not as sharp as she used to be.

But today, I feel like she was aware of how stuck she was. Part of it was a friend took her to doc instead of me (I met her there) . I think that small change threw her off.

On a positive note, she was so happy to get back to her AL. I think it’s become her safe space. She likes it - she has friends (all w/ memory issues, not sure what they talk about) and likes the space and the staff.

Do you think people w/Alzheimer’s/dementia know when they are off? I know about anosagnosia, and my mom does not think her memory is off, but do they know something is wrong?

This seems like it would be so scary.

Quilting brings calm

My mom knows something is off, and she knows she gets confused and can’t remember stuff. It used to upset her, but she’s on good antidepressants and they help.

GothicGremlin

Yep, my sister definitely knows. And it does frighten her sometimes. Between me and Peggy's friend M, we can usually make her feel safe though.

She also knows she can't do the things she used to do. Last week she asked me "do you know why I can't do some things anymore?" She's asked me this before, and I take careful note of her mood before I answer. If she's relatively clear, I'll tell her it's the Alzheimer's, and she'll respond, "oh, that's right" (or words to the effect). If she's in a precarious mood, I'll just say something like "well, none of us are twenty years old anymore." If I laugh about it, she'll laugh with me.

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Anonymousjpl123

Thank you all for responses. It’s good to know I am not imagining it.

@Quilting brings calm Maybe antidepressants will help my mom at some point. I don’t know what she feels about it all.

@GothicGremlin I love that your goal is making her feel safe. That’s precisely my strategy. Comfort, familiarity, security. I want to help her have that. It’s hard when I see the progression.

@Victoria2020 we are almost there, but not yet. She still gets dressed by herself. A year or so ago, she bought herself like 100 pairs of underwear. I think this was happening. She usually has quick access to change. I can’t bring myself to push this right now. Maybe in a few months.

I guess I just need to accept this is what is happening and let that be hard sometimes. I am so grateful the staff are so kind where she is. The vibe is cheerful and loving and that is everything.

harshedbuzz

@Anonymousjpl123

Emotional intelligence persists well into the latest stages of the disease. If she was upset by the routine of you not driving her, perhaps thinking you were "too busy for her" I could see that setting her off. Or perhaps she struggled with something and the mood stuck.

I would address the incontinence sooner rather than later.

If she's wetting herself, the staff at the ALF may bring it to your/her attention which will likely upset her. Another resident may call her on it. If she's starting with bladder incontinence, she could be leaving furniture wet in the public areas of the community. Check her laundry; if she's changing panties but not her slacks, that's not great. Maybe you could introduce Poise pads or a washable incontinence panties.

Absorbent Underwear for Bladder Leaks | Thinx for All Leaks

Be sure her bed is properly covered in a 6-sided, zippered waterproof cover or her mattress will be ruined.

HB

Anonymousjpl123

@harshedbuzz yes you make great points. I will definitely make sure her mattress is covered - that’s the easiest one.

I do her laundry so I have some sense of it. Well before moving, she ordered literally like 30 pairs of the same lightweight pants (along with the underwear). I chalked it up to her not being able to use the washing machine at her place anymore at the time, but now I know better. She tosses the dirty stuff in her laundry basket and changes. I think it doesn’t happen there in public because they have bathrooms everywhere, but that could very well be my fantasy.

in terms of the emotional intelligence I think there’s a lot of truth in what you are saying. I don’t think it was she thought I was too busy (I did meet her there) as much as she just gets really disoriented with unfamiliar things (like my neighbor picking her up). She didn’t know who she (neighbor) was. That’s what I mean about things getting scary for her. She also didn’t recognize her doctor (who she saw 4 weeks ago). That has to feel bad on some level.

Cosmic

Not unusual for depression. My wife of 60 yrs. knows she has memory problems, she knows she has dementia and that is depressing enough for her. The anti-depression medication seems to help but there are times when she gets overwhelmed and nothing helps. You're fortunate you can still go out to eat. My LO forgets how to eat sometimes and has to watch me or be taught. Food needs to be cut into bite size pieces so she can use a fork, any sandwich foods need to be cut in small portions and she has to be shown how to eat them. Every morning I have to lay out her clothes for the day along with fresh underwear/pads otherwise she does not know what to do and starts crying. Same with bedtime pajamas. Yes they do know there is a problem and nothing can be done. She begs for help and it breaks your heart.

mommyandme (m&m)

Will she wear incontinence pads in her underwear? That’s where my mom started.

And yes, sadness is a thing although mom barely ever cried. I could tell what she was emoting usually. She’d often say, “I just don’t understand why I don’t get it” or “why is this happening?” Validating her feelings worked best for me. Empathizing by saying “we all have trouble sometimes.” or something like “I know it’s hard, I’m here to help you from now on” in other words, “ I got your back”. She actually got herself diagnosed. She was an RN and was always seeking medical answers for anything and everything. There came a time I asked her if she knew what Alzheimer’s (dementia) was… she said in a confused sort of way,”no?”, so I never brought that up again.

we do what works best most of the time to comfort our LOs. It’s the best we can do.

Anonymousjpl123

@Cosmic wow for some reason your post hit me hard. It just made me remember to truly be grateful for what I have. I cannot imagine what you are going through. I think of my father (they were married 60 years too) a lot these days. My relationship with my mom is complicated your post really really helps me feel compassion.

@mommyandme (m&m) i guess I’ll broach the subject with her. It’s so crazy. I really need to make sure she feels respected, and not embarrassed. Not sure that is possible but I want to try. I might say I’ve been using them (I’ll find a reason). Actually, now that I write that, it may work! I do try to empathize, make it no big deal. But on some level I know she knows. We don’t talk about it because she’ll deny any memory issues but I feel it that she knows on some level. She had a phd and prided herself on her intellect. It’s sad.

LicketyGlitz

On days like that my mom used to ask me what was wrong with her. I'd tell her it was her brain acting differently now, and me an my sister were going to help her from here on out. That's not always the best approach for everyone's dementia person, but Mom found it comforting to get an answer.

Also, Mom went through a stage that I nicknamed Downer Town where she was continuously sad for a month straight. Her primary care doctor sent us to a geriatric psych doctor (the specialize in medication for elderly cognitive issues). We went to Dr. Susan and after hanging with her for a half hour she said, "Well, of course your mom's depressed, she has dementia." Doh! That made a lot of sense and a low dose antidepressant provided some relief from the crushing sadness she was experiencing.

PookieBlue

Sadness and sobbing is a new behavior with my DH.

Yesterday, he came out to the garage where I was sorting mason jars. He was sobbing saying he felt like a failure because he did not go to see his mom when she was dying. I reminded him that he used to fly back to Iowa once or twice a year and spend a week with her. I had a hard time comforting him, so to distract I asked him to get the jars from off the top of the ice box. It worked for a little while, although not completely. I finally convinced him that we were both orphans for quite some time as our parents had passed away decades ago. I convinced him that we had flown back for the funeral. He calmed down saying he was glad that he didn’t call his sister Karen and Bob about it.

I realized that in his mind, she had just died and he thought he missed her funeral.

I asked him to go sit in the sun by the water feature and he did. I brought out coffee and sat there with him. That helped him a lot. Apparently, I’m not spending enough personal time with him because I am so busy and feeling overwhelmed with all the redundant questions. I need to just take a deep breath and be with him more, although I feel like I am always with him unless he is napping.

Anonymousjpl123

Great news to report! It worked like a charm. I told her I was having problems too, and did she want me to share with her what special underwear I found. She was like “yes that would be great!” I asked her to please not share with anyone and she said “Of course not, because that would mean I was sharing about my problem too.”

@LicketyGlitz and @PookieBlue yes I guess the depression does make sense. I’ve been trying to be really nice to my mom. Just kind. My niece got wind my mom had a rough day and went to visit her with her dog!l yesterday. It’s the little things.

Honestly I am just so relieved she is not alone anymore. For anyone feeling guilty their LO is in care, that was far and away the best decision I ever made. Now, she can come visit me (like she is today) and relax and enjoy it. She still knows who I am and where I live.

Yes, incontinence has now gotten to the point where she needs to wear depends or something all the time.

Yes, she cannot be alone outside her AL safely.

Yes, she can’t hold a long conversation.

but she is safe and comfortable and relaxed and I am endlessly grateful.

LicketyGlitz

Rock on, Anonymous! So happy to hear you and your fam gave dementia a good punch in the face on this one by hitting on a new strategy and showing up to cheer up!

Your mom's incontinence may be past this stage, but if not these were really good transitional panties for my mom: https://www.thinx.com/thinx-for-all-leaks?utm_source=google&utm_campaign=DemandCapture_Search_TFAL_US_NA_Conversion_Nb_Google&campaignid=19573917090&adgroupid=146896668882&adid=655272425442&keyword=bladder%20underwear&gad=1&gclid=CjwKCAjws7WkBhBFEiwAIi1686JSq3sOL88s-ICZRqulL3Ilr495JiTHErxGWes4enlUjDqzNjS5IxoC1c8QAvD_BwE

Anonymousjpl123

@LicketyGlitz thank you and yes!!!! That’s exactly the cheer I needed thank you!!!!

I think she may be past that phase, but maybe a good start! She seems to have pretty much zero control now. But I’ve got to believe any protection is better than none. I am so relieved we had the conversation and can shop around.

The symptoms seem to be worsening so fast, over 2 years, but in hindsight I just wasn’t aware before - I really didn’t see her that much. Like everyone here, I’ll just try to handle it with as much grace as possible.

Thanks everyone.