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ALZ stage 3/4 - level of support

Katithedaughter
Katithedaughter Member Posts: 4
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in Caring for a Parent
Hello all, I am a secondary caregiver to my mother who is approaching stage 4 ALZ pretty quickly. She is on her 6th round of Kisunla, so the constant supervision requirement has lessened, but the doctor is telling us that she is still needing supervision due to the ALZ, but not super specific on what that means exactly. My sister and I feel it still should probably be pretty close - someone with her overnight, check that she takes meds in the AM and PM, and probably around meals as well to ensure she eats and is safe if she has the whim to cook something. My step father on the other hand went away for the weekend without telling us, citing that the supervision requirement is lowered now. I plan to try to reach out to a social worker at the Area on Aging Agency tomorrow as we do not have one assigned to us, but was curious about others' experiences. Thank you!!

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  • H1235
    H1235 Member Posts: 2,333
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    Answer ✓

    I agree with the above. With anosognosia you just never know what she might decide out of the blue she is going to do. What if she decides to bake banana bread and forget ps it in the oven, go fora walk and gets lost, paint the shed and climbs a ladder and falls. My mom thought if she could push her walker there is no reason she couldn’t push a lawn mower. You just never know what they might be thinking. In my opinion it’s best to err on the side of caution. Burning down the house is just taking too big a chance. At a solid stage 4 moms doctor ps have recommended 24/7 care. This really puts you and your sister in a tough situation.

  • Emily 123
    Emily 123 Member Posts: 987
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    Answer ✓

    Hi,

    Have you spent an overnight or two with her lately? I think that might give you the best idea of where she stands. Most people in stage 4 can get through the day by relying on their routines, but over a few days the gaps become clear. I do not know much about how much of a bounce back there is after Kinsula, but since the disease varies so much from person-to-person it's good to be err on the side of more support rather than less. Stage 4 is a tricky one because there might not be a lot of missteps, but any misstep could be a big one, and they can crop up randomly. I think you and your sister are on the right track.

    Stepfather should still arrange for you all to be able to check in on your mom if he's away. Does he think the Kinsula is a cure?

    If you have concerns for the level of care your stepfather can provide, or if what he can provide is consistent, now might be a good time to have a talk with him and assess if he's up to the burden of care or if an aide or even assisted living might be an option.

  • April23
    April23 Member Posts: 211
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    edited September 27 Answer ✓

    If you look strictly from a clinical perspective, using the Dementia Behavioral Assessment Tool, Stage 4 would mean your mom should not be driving, have access to finances, needs assistance taking medications and eating (as you’ve seen), and is at risk for exploitation/scams. Problems with coordination and ADLs are on the horizon. Also she may have difficulty with complex tasks like cooking and bathing. I don’t think you can be too cautious at this stage. On the contrary, it’s best to stay one step ahead.

Answers

  • Katithedaughter
    Katithedaughter Member Posts: 4
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    https://alzconnected.org/discussion/comment/283216#Comment_283216

    Thank you for your response, this is very helpful to gage whether we are being too cautious. We spent last weekend with her while he was away (hunting season) and generally if left to her own devices she will watch TV, play solitaire on her phone, nap, and generally forget to eat. This feels like a conflict we keep coming back to as it relates to him wanting/needing to be away (I get it - respite is important! And we encourage it if her care is considered), but I think they both struggle with the reality of her needs only increasing and not decreasing ever again. A bit of denial for sure.

  • Katithedaughter
    Katithedaughter Member Posts: 4
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    Thank you for your response, this is really helpful in confirming that we really need a professional to speak with him (and my mom) about what the expectations should be at this stage.

  • Katithedaughter
    Katithedaughter Member Posts: 4
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    Member
    https://alzconnected.org/discussion/comment/283238#Comment_283238

    This is SO helpful! Thank you so much - I had not known about this tool. We are definitely seeing all of these declining unfortunately.

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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