Friday, May 6, 2011

Why I Keep My Mother at Home

My mother has mid-stage probable Alzheimer's Disease or some related dementia and as my friend Susan says, "has become toxic." This week she is suspicious of and furious with me because of the form we need to fill out for her Long Term Care (LTC) Insurer. It requires her caregiver to mark the amount of time she spends on each task listed at the bottom of the form. Toileting, transferring, bathing and other Activities of Daily Living (ADL) are arrayed in the little box at the end of the page. So are "constant supervision due to cognitive limitations" and "medication supervision," as well as "cuing" for other ADLs, all of which apply. The major task in taking care of my mother is to be present, as she shouldn't be home alone anymore for the whole day. And when one of mom's three insidious chronic diseases present themselves, she needs ferrying to the doctor's office sometimes multiple times a day. Plus, someone should be there to make sure she eats, is safe getting in and out of the shower and dressing.

The problem comes because my mother doesn't think anything is wrong with her so she wants her caregiver to mark down only that she does "housekeeping," which is clearly not just unreimbursable but is likely to get the LTC policy discontinued. This weekend she accused me of making her caregiver commit fraud by lying on the insurance form.

And then today she tried to sell a Currier and Ives print from my childhood without telling me. She asked both of my children if they wanted it, but not me. I think she is trying to hurt me. My eldest says I'm making more of it than it is. My husband agrees with me. And here you see the beginning of a feud in my own home.

Therein lies much of the problem.

I have these forms spread out on my kitchen table, trying to fill out the ones that need tending so that mom gets reimbursed. Mom showed up in our bedroom today where I was hiding out, and wanted to see every form before I mail it, which means I have to confront her with the truth, which means that mom will be furious and life will be very nasty for a long, long time, or at least every week when I have to deal with LTC housekeeping. I did not sleep last night.

I really think that subterfuge and lying are the way to go here.  Agree with her to her face, and send in the forms like crazy behind her back.

Our family therapist, mom's physician and a friend all tell me that maybe it's time for mom to be moved to a more appropriate environment, if only to save my sanity, marriage and possibly my relationship with my mother. However, sending her away seems like breaking a sacred trust. Just as I wouldn't send my husband away in similar circumstances, or my children, I wouldn't send my mother away. So, other than that, why do I keep my mother here in my house?

I think while writing, so I thought that writing the reasons mom should be at home would help me to better consider my alternative courses of action. So, here we go...

My mother lives in an addition on our house because:
  • She took care of me for the first 18 years of my life, sometimes when I was not so loveable and I owe her the gift of living where she wants to live.
  • She has helped us tremendously as a married couple with emotional support (when she was able) and financial support (when she was cognitively intact) and we owe her this much.
  • She paid for the beautiful addition on our house where she lives; we committed to caring for her and shouldn't renege on that promise unless we can come up with the money the addition is worth to set her up in another living arrangement. The sky will fall before that happens.
  • I'm a gerontologist and I know what happens to elders who are moved without their consent; they die.
  • She shouldn't be moved unless she wants to move.
  • She paid for a LTC policy and has the money to bring in a caregiver to take care of many of her needs during the day, which lightens the burden on us.
  • Paying for a nursing home or other extended care arrangement would be like throwing away money because her LTC policy wouldn't be needed or used; what a waste.
  • She is a part of our family; our children, grandchildren, grand nieces and nephews love having her here; so do we, but less and less often these days.
  • Her garden improves our quality of life; if she wasn't here it would be a weed bed or filled with stones and ugly red bark dust.
  • What would I do without my mother's love, because surely I would lose it if I moved her?
  • I could never forgive myself.
  • And finally: Some things you just do.
    I knew that there was never another course of action but to keep mom at home, but writing it out helps me see the many reasons why that's so. At this point, if I could just get her to stop barging into our house to use our washing machine (she has a beautiful one in her own place) I think that half of the battle would be won.


    1. Wow - I know what you're going through, believe me.

      Though my family's such woes ended in 1999, when my great-grandmother finally passed away, we dealt with her illness (Alzheimer's) for over 10 years. We saw her slip away, bit by bit and piece by piece, until she - the last few years of her life - was curled-up in a fetal position, unable to communicate.

      It was a heartbreaking to see this strong, funny, sweet, hard-working Cajun woman become what she did but none of us regret the experience.

      We put her in a home only once during the decade we had her with us and she was suffering through the disease and it was right after she fell and broke her hip. After a year, we brought her home for she was dying and slipping away from us there at a terrifyingly sped-up rate.

      We kept her at home and had nurses aides (bless them!) come 3x's a day to help with her basic needs. It takes an enormous toll on a family deciding to keep an ailing Alzheimer's patient at home and my heart goes out to you. Have you looked to see if there are any local, or even online, groups that you might be able to find some solace and understanding in? Back when we were fighting through this, it was all still quite new and there were not as many resources for family members of Alzheimer's patients as there are now. I urge you to reach out and find a local or online community filled with others going through the very things you are. It really does help to know you're not alone.

      Best to all of you; I know how difficult it can be and it's never an easy decision to keep a ailing loved one at home.

    2. Shanna, thank you for reaching out. It is the most Godly and appreciated things that we humans do. I have a lot of support, both from on-line groups and our family therapist. But, writing helps.

      Remember your grandmother as she was when fully present. That is my goal with my mother.

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