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Advice on Home Care, plus the Dreaded Question...

Alan4HER
Alan4HER Member Posts: 5
First Comment 5 Care Reactions
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in Caring For a Spouse or Partner

I’m new here and so grateful I found this site filled with amazing stories, compassion, helpful information, love and support. It’s a wonderful community navigating a difficult journey…

I too, am on the journey. My DW is likely stage 4 and becoming less verbal, more withdrawn, and lost interest in cooking. She needs reminders/help with personal care and occasional incontinence began seven months ago. She enjoys reading, but is less active. We walk at stores or sometimes outside, but overall not much physical activity. I’m not a great cook and getting concerned about nutrition, since we have a narrow repetitive meal routine. 

Some family members have recommend home care help and I spoke with two so far. One is highly rated, seems to have an experienced responsive main person with a heartfelt passion to help, does background checks on staff, provides an on-line daily report journal, and offering a free home visit. They seem like a premier company with a cost ~10% higher than the other company. The first company requires 12 hours/wk minimum and recommends starting two days with 10-4 shifts.

The cost is more than expected and something I’d have to adjust to, but I could afford it. I don’t think my UHC MA policy provides any benefit, but they may have some 8 hours/mo support.  Maybe I could get PT or OT to provide some help, but not sure if that’s good and then I’m coordinating amongst multiple agencies and involving multiple people in our home. 

I feel having someone in our home 12 hours every week would be intrusive, but assistance with meals, physical, and social stimulation would helpful. I’m looking for comments, recommendations, and advice on how to navigate this, how to start, and how much time is appropriate. 

Also, some neighbors, friends, and family are asking the question I’ve come to dread: “How’s DW?”  I KNOW they are well meaning, but I find this VERY HARD to answer.  Many people, including myself, don’t fully understand what is happening, the outlook, or how someone is really doing.  How does one respond to this question without violating privacy, making your LO look bad, or having others needlessly worry? 

Sorry for the long post, but look forward to your comments… 

Comments

  • jgreen
    jgreen Member Posts: 367
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    Hi @Alan4HER

    Welcome! Glad you found this site; just sorry you have to be here.

    I called my local Agency on Aging and am waiting to receive a phone call back from them to do an assessment. (Another name could be Elder Affairs - you can look them up for your area). I understand they can connect you with resources and may also be able to talk with you about agencies ‘requiring’ a certain amount of hours per week. I don’t like that tactic.

    And there is a program called GUIDE that will cover in-home care expenses up to a certain amount for Medicare recipients. Ask them about that. And finally ask about legal services if you haven’t taken care of durable power of attorney, healthcare surrigagte, advanced directives, will/trust, and the like.

    Check back with us and let us know how you are doing. We care.

  • White Crane
    White Crane Member Posts: 1,195
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    Hi, Alan, and welcome to the forum. I'm sorry you need to be here but since you do, it is a good place to come to get help, support, and answers that come from experience. First of all, if you haven't done so already, you need to contact a certified elderlaw attorney. That person can guide you on what you need to do to protect your assets and help you with a durable power of attorney for finances and healthcare. If you can't find one, look on nelf.org. As jgreen talked about, call your local Area Agency on Aging. They were a tremendous help to me when my DH was still at home. And there was no charge for their services. They provided us with caregivers who came to the house and a shower aide. As to how to answer the question of how she is doing or how things are going. My stock answers are, "He is doing as well as he can"; "A day at a time we get by."; and "We/I are/am hanging in." Then I smile and let it go at that. There are a couple of dear friends who I can talk honestly with but otherwise this forum is my main support. Come here often and ask all your questions. We are here for you and for each other.

    Brenda

  • Jgirl57
    Jgirl57 Member Posts: 848
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    Welcome, initially it can seem intrusive to have home help. Since nutrition and meal planning is a concern for you , you might want to have the home help staff prep and make some meals. It can take a bit of pressure off you. Our agency doesn’t have a weekly minimum, but they do have a 4 hour minimum per visit. When people ask how he is doing , I say “doing ok with the expected decline”. I think they really just want to be polite but can’t handle nitty gritty truth .

  • H1235
    H1235 Member Posts: 1,980
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    Welcome. Since meals are a concern, you might consider having someone come in strictly to cook, clean and shop. Then have someone else come in for caregiving. This might be less expensive and your help would be specialized for the needed tasks.

  • Michele P
    Michele P Member Posts: 434
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    https://alzconnected.org/discussion/76239/advice-on-home-care-plus-the-dreaded-question

    There are chef curated meals through companies such as Factor that will ship meals to your home that can be heated in the microwave or oven. Meals are already fully prepared and frozen. They offer excellent meals with options for vegetarian or plant based meals if desired. Before you bring anyone in your home for care, lock up all valuables. We had jewelry stolen out of a relatives home.

  • annie51
    annie51 Member Posts: 663
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    Welcome @Alan4HER. This forum does not disappoint, as you can see by the wealth of good information you have received here. In home care is the logical next step for you so you don’t get burned out.
    My journey with my DH is over, but one thing I wish I had done early on is contact the Area Agency on Aging, as many have mentioned here. I didn’t know about all the resources they can provide.
    Personally I started with a companion caregiver for DH for two days a week, 2 hours each day. The cost per hour goes up when you only do 2 or 3 hour shifts, but I was concerned about what that person would be able to do with DH to fill the time (he was in a later stage than your wife, so his activities were very limited). I would have had a hard time having a person from 10-4 to start off. In my opinion, find an agency that allows shorter visits of 2-4 hours and see how your DH responds and how comfortable you are. Best of luck and keep coming back to this forum. It is a lifesaver!

  • SDianeL
    SDianeL Member Posts: 3,336
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    if your DW is not on Medicare, file for disability. There is a waiting period but it might be waived for Dementia. Then she can get on Medicare. There is the GUIDE program on Medicare you may be able to get help from. I started with 4 hrs per week of respite care. I could run errands and go to my doctor appointments. I also got maid service to clean every 2 weeks. Read the book “The 36 Hour Day” and search online for Dementia caregiving videos by Tam Cummings or Teepa Snow. They are very helpful.

  • Chance Rider
    Chance Rider Member Posts: 314
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    https://alzconnected.org/discussion/comment/274447#Comment_274447

    Thank you for mentioning Factor for prepared, frozen meals. I came here today to ask for recommendations for exactly this. My husband doesn’t like leftovers, prefers to be able to pick from frozen meals on hand that he can simply microwave. Factor sounds like it’ll make meals easier for him and me. Thx again!

  • sjones920
    sjones920 Member Posts: 2
    First Comment
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    https://alzconnected.org/discussion/76239/advice-on-home-care-plus-the-dreaded-question
    https://alzconnected.org/discussion/76239/advice-on-home-care-plus-the-dreaded-question
  • sjones920
    sjones920 Member Posts: 2
    First Comment
    Member

    Hi Alan4Her,

    My DW has many of the signs of stage 4, but she hasn't been incontinent. We have an in-home caregiver who comes three times a week for 3-hour shifts. She has been a Godsend for my wife and me for several reasons. First, she's a trained professional who knows which activities will stimulate my wife physically and cognitively. Second, she does light housekeeping that my wife can no longer do and that I don't always have time for. Third, those visits give me time for self-care, which is important for all caregivers. It is stressful to deal with my DWs emotional outbursts, even though by the next day she will have forgotten being upset. I am fortunate to still be working full-time and to be able to work remotely and to be able to afford the costs of an in-home caregiver. I think having someone come in a few times a week, even if it's not for 12 hours, is something you should consider.

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

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