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Dealing with possible anosognosia and FTD

sandyeigo
sandyeigo Member Posts: 9
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We have been living with my MIL for about 6 months. She was diagnosed with FTD approximately 5 years ago. I could not say definitively what stage she is at as my SIL managed most of her care previously as she lived closest but was not able to move her into her home. The decision to have her move in with us was prompted by increasing signs that she was no longer able to manage things like driving and cooking for herself. After her initial diagnosis she was aware of the diagnosis and over the years had questions and anxiety about what that meant, but I have noticed in the time she has been living with us that awareness is gone. It's not that she denies having dementia, it's just not discussed, but she does not seem aware or acknowledge the need for support and when the dementia diagnosis does come up, like at the doctor's office, she does not understand what that means.

The difficulty we are experiencing is the time my husband and I are out of the house. Initially we thought she might be ok for a few hours while we both work as our work schedules only overlapped one day of the week, but after a fall she had while out on a walk without our knowledge as well as some other questionable decision making while we were gone, we realize constant supervision is probably best at this point. We located an Adult Daycare in our area, took a tour, took her to visit it, and decided to sign up for the minimum required days, which is 2. While we have some kinks to work out as far as how long she should be there, and what time of day (definitely not too early as waking her up before 8am is definitely courting disaster) the two days she has gone so far have been met with a lot of resistance. She believes she does not need to be there and does not need any assistance, and I suspect anosognosia is the cause. To be fair, to the casual observer, you would not know she has dementia. But she relies very heavily on the routine we have set up in the home, is beginning to have difficulty bathing (still does it but is likely just going through the motions most times as I do need to wash her hair for her every few days), struggles to think of ways to occupy herself without direction, cannot follow a series of directions, consistently forgets where things are in the house despite things being labeled, and I'm not convinced would remember to eat meals without being directed. She can fix a bowl of cereal on her own and regularly assists me in meal prep at dinner time as long as I keep the instructions simple, but I have had to start prompting her to eat something in the afternoons as well as preparing a lunch as she was not doing so herself.

My question is how have you all delt with these kinds of transitions. The move into our house was not exactly met without resistance, but once she was here it did not take long for her to settle in. The Senior Center is a whole other level of resistance and I'm at a loss on how to proceed as I don't think she is aware that she has a problem, or at the very least, she does not believe it is bad enough that she cannot be left unsupervised. The care center has seniors of all abilities, some nonverbal, some recovering from strokes, but there are definitely those who would be considered peers as far as ability. However, all she is focused on is that she does not need help like "those others do" and does not recall the interactions she has that are positive. I am concerned that this is going to just become a point of contention and an argument every morning we need her to go to "that place" despite us trying to put a positive spin on it. Do we just give in and try and seek alternate care that will likely be met with the same resistance? Do we dig in and just plow through and hope she adapts?

Comments

  • SDianeL
    SDianeL Member Posts: 1,523
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    She does not know nor will she admit that she has dementia. You can’t reason with her. Try fibbing. Tell her it’s a senior center where seniors go for fun. Don’t discuss dementia or that she needs care. Tell her the senior center needs her to be there. Use similar fib if you have a caregiver come to your home. Tell her you need the help. If you haven’t done so, read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Also search for Tam Cummings videos about dementia and caregiving.

  • sandyeigo
    sandyeigo Member Posts: 9
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    Thank you! I will definitely check out those recommendations. I have known for months she was no longer aware of her diagnosis but never knew there was a name for it.
    She is currently dug in bed refusing to get up because she was supposed to go to the center. We are at our wits end and will probably just look to having a home care giver come in because there is no amount of trickery that will get her to go back. She has decided.
    It’s hard because she might be ok on her own for a few hours but we just don’t know. She’s definitely made some questionable choices lately. She had a fall a month ago because she went on a walk without telling anyone. Hubby had left for work and I was still in bed. Woke up to her trying to clean up her bloody face 😞 She remembers the fall and insists she will never do anything like that again.
    It’s so difficult because as I said, it’s not always obvious she has dementia. She has really good days/moments that make me question how much support she really needs and feel awful for taking away so much of her autonomy.
    As a side note she always likes to tell the story about how she would refuse to eat things she didn’t like and her mom would make her sit at the dinner table until she finished. Guess who also won those grudge matches 🤪 I knew what we were up against going in.

  • Schilder64
    Schilder64 Member Posts: 8
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    I'm sorry you're having to deal with this - it's so hard. My mother has dementia, and we've been using an in-home service called Seniors Helping Seniors - here's a link: https://seniorshelpingseniors.com/

    They use retirement-age people (and younger sometimes) to go to peoples' homes and assist with whatever they need help with. Both of my parents were resistant at first but now they look forward to the visits. My parents have both given up driving, so the SHS folks take them shopping, help them run errands, etc. All in all, it's been working out really well, and if she has long-term care insurance, the visits should be covered.

  • H1235
    H1235 Member Posts: 864
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    I get it! Anosognosia is the worst. In a normal conversation with my mom you might not even know she has dementia. But she plans to reupholster a couch, mow the lawn, sew a quilt and thinks she can go up and down steps with no trouble. She is stubborn and feels I am taking all her freedoms away for no reason. We have also experienced a personality change with my mom. Where she use to be indecisive and had no hesitation asking for help, now she is more confident and independent minded than I have ever seen her. It’s nice, but not when she she’s determined to mow the lawn. So even though she can fix herself a sandwich, use the tv remote and take care of her personal hygiene she still can’t be left alone. Someone here has said you need to provide care for your loved one at a level alined with their worst day not their best. If you have a caregiver come into the home I would tell her it is to help you out or they are a friend of a friend that needs experience (she would be doing them a favor) and down play that they are there to care for her. Good luck.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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