Have any questions about how to use the community? Check out the Help Discussion.

When to move to AL?

dserra552
dserra552 Member Posts: 5
First Comment
Member
in Caring for a Parent
Hello, I’m new to this forum and wanted to know if anyone has had experience with when/if to move a parent from independent living to assisted living? My mom is in IL right now and her Alzheimer’s is advancing, but she can still do many things for herself. She has pretty severe anxiety and I’m worried that moving her to an unfamiliar place would be terribly hard for her. She is on hospice, so has that support, and I have hired home health care workers to check twice a day while I’m at work. Some of her caregivers suggest keeping her where she is, and some suggest moving her now while she still has some idea of what’s happening. I’m confused, exhausted and grieving and honestly don’t know what to do. Any advice would really be appreciated ~

Comments

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Welcome to the forum. I'm a bit confused, is she receiving hospice care because of her dementia, or for another reason? Not sure it makes sense to move her if she's already on hospice.

  • dserra552
    dserra552 Member Posts: 5
    First Comment
    Member

    Thank you for asking, she’s on hospice for her dementia, she was sleeping pretty much all the time, refusing to eat and had lost a significant amount of weight so her doctor recommended hospice (this was about 3 months ago) She has improved a bit since then. She will sometimes go several days without getting up or eating much, but then will have a period of good days when she gets up and can function and seems like she knows what’s going on. Some of her hospice team thinks she should move and some think it would be better to leave her at her current place with extra care in place. Hospice has told me that she could go on and off hospice for a while, and that they will re-assess her every 6 months to see where she’s at. I feel like a move to AL would create a big downward spiral for her, but I wondered if others had experience with a move to AL at different degrees in the Alzheimer’s process?

  • Marta
    Marta Member Posts: 694
    Legacy Membership 500 Comments 100 Likes 25 Care Reactions
    Member

    I can’t understand how your Mom qualifies for hospice.

    FYI: there are for-profit hospices out there that have very loose admission criteria and are therefore scamming Medicare and us taxpayers.

  • dserra552
    dserra552 Member Posts: 5
    First Comment
    Member

    Well, she lost almost 20 lbs (from a very tiny frame to begin with) and she slept for almost three weeks straight. She was full on hallucinating when she was awake. Her doctor felt that she would qualify and hospice agreed. I don’t feel like we are scamming anyone. I’m the only family caregiver in town, my siblings live across the country. I work, I help my kids with my grandkids as often as I can and I feel like I’m not keeping my head above water. Maybe her Dr was trying to be kind and helpful. Mom is getting better support and I feel a little less pressed. But that wasn’t actually my question. I was just looking for advice about whether to move her.

  • housefinch
    housefinch Member Posts: 434
    100 Care Reactions 100 Insightfuls Reactions 100 Likes 100 Comments
    Member

    I suppose if independent living is truly ok with a dementia patient on hospice, and the very intensive hands on care most patients with that situation require, I wouldn’t move her. The reason you are getting surprised responses that aren’t focused on answering your question is because most of us are probably stunned that any independent living facility would agree to having a dementia patient who qualified for hospice. I am sorry that my response is so blunt. I don’t know how else to explain this. Typically even memory care facilities sometimes ask families to hire extra caregivers in this situation. For reference, 2 of us replying are physicians and 1 is a nurse. I hope this helps.

  • Emily 123
    Emily 123 Member Posts: 847
    Fourth Anniversary 500 Comments 100 Insightfuls Reactions 100 Likes
    Member
    edited November 2023

    Hi dserra,

    Make the decision based on what provides the best solution for both you and your mom. What does the healthcare team think is going on with these up and down cycles she has?

    When she is able to be up and about, what can she still do? What do you rely on the aides for? Ultimately, your decision may come down to whether or not she's safe when there's no-one there with her, or if the disease puts her at risk. Can she rescue herself and get help if something happens? If you're stretched thin, moving her may ultimately provide better security for her and peace of mind for you. The move might be easier for her if she can still understand it, but any move once the Alzheimer's has taken hold will be disorienting, because the person has to learn a new environment without having a short term memory. It can take weeks, depending on where the person is in their disease (just so you know). Often by the time the move is made the person is fairly well along. Hopefully her healthcare team would be able to adjust her medications to help with any anxiety.

    There's a checklist at the back of this handout that can be handy in identifying behaviors in Alzheimer's. A person with the disease may not check every box in each stage, but they will progress through the stages as they're listed.

    Tam Cummings assessment tools/AD checklist

    https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

  • dserra552
    dserra552 Member Posts: 5
    First Comment
    Member
    https://alzconnected.org/discussion/comment/189832#Comment_189832

    Thank you, this is helpful. The people at her IL are really supportive, they check in on all of their residents at least once per day (if requested), and have a team of caregivers that work exclusively with their residents (they are hired by residents who need extra care). I didn’t realize this wasn’t a common occurrence in IL, and am even more grateful for them now. And it does help explain other comments, so I appreciate the information.

  • dserra552
    dserra552 Member Posts: 5
    First Comment
    Member
    https://alzconnected.org/discussion/comment/189835#Comment_189835

    Mom’s health team haven’t really had any good ideas about why she cycles up and down so much. They have told me that this is common with Alzheimer’s, but haven’t really explained why. I can connect it it most often to periods when she is stressed or anxious about something, but that’s not always the case. We have a caregiver who helps her shower, she can’t do that on her own. I manage all of her meds, her finances, shopping, appointments, etc. She can still dress herself, toilet and feed herself if she is not in a downward cycle. When is down, her caregivers and I help her with getting meals, making sure she eats and drinks. She has pull cords throughout her apartment, and people checking in briefly 3 times per day at least, so I feel fairly good about her being able to get help if she needs it.

    Thank you for the resources, I think these will be helpful. I appreciate you reaching out.

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
Read more

Community Guidelines


Click here to review the ALZConnected Community Guidelines

Categories