Facing the reality of my Mom's decline, and considering Hospice.

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I'm grateful for the thoughtful, caring posts I've found on this Web site. I'm new to the forum -- Glad to have found you all.

I’ve no clear questions at this time, but just sharing with you where I am in time and space with my soon-to-be 91-year-old mom, and any comments (and hugs) are welcome.

I feel my mom is nearing the end -- she has a lot of health issues -- and I'm trying to give her quality time (as much as I can) and keep her comfortable and happy.

She has live-in caregivers who are very good and compassionate, but it is getting hard for just one person to manage her. I'm over there just about every day, helping with transfers, doing wound care, and overseeing everything.

I (and my siblings, and Mom) made the choice long ago to keep Mom at home. For her, it's absolutely been the right decision. There is no doubt in my mind that she would have been gone long ago of she'd been in a nursing home (based on her experiences with numerous rehab/long-term care facilities in the area). Now that she's nearing end of life -- 3 months? 6 months? 2 years? -- we'd like to continue to keep her at home if possible.

She sleeps a lot, and is not always engaged. She doesn't have a terminal diagnosis but a lot of "co-morbidities" - diabetes, vascular dementia (a recent thing), chronic wound on her foot, and other issues. She's also in a wheelchair, and fully dependent on others. I used to take her out once a week to get her hair done, or take her to lunch, but she sleeps so much, it's hard to even get her to the doctor's office.

A couple of healthcare professionals have suggested that we consider bringing in hospice. Her primary doctor would support this, although he hasn’t explicitly recommended it. And she doesn’t have a terminal prognosis at this time. But it seems clear that she is failing.

The other thing is, Mom is afraid to die. I’m trying to address that with her (and you all had some great suggestions I’m going to try). But “hospice” has such a heavy "final" connotation, so I’m not sure that I can bring an agency in until she is more at peace with her mortality.

Also, when my dad passed, we didn't have a positive experience with hospice. I’m hoping our negative experience was an anomaly – he came home bedridden on a Friday and they said, “See you Monday” and we had no clue what to do or how to care for him. But if we can bring hospice in before we’re in panic mode, maybe it will be a better experience.

One of the things that is looming is the chronic wound, which could lead to loss of limb if it doesn't heal (and she's had it for more than 6 months, and it's not looking good). I told her long ago that she is leaving this earth with all her parts; so hospice may be on the near horizon.

Thanks for letting me ramble. Scared, sad, and brokenhearted that I can't save my mom from the inevitable. Hoping I can at least help her come to terms with dying and be at peace with it.


Welcome to the forums.

Some thoughts to share with you:

Hospice is really intended to be a "long" experience of weeks or months, and is not set up to provide the most benefit when called in at the last moment.

Your mother may not qualify for hospice care at this time, but having her evaluated would be an introduction and you could call upon them later.

My experience with hospice in our home was entirely positive. My husband was on it five weeks.

With your mother fearing death, I really don't know how she would react to hospice. Maybe it would be terrifying. Or maybe hospice could help you help her be more at peace.

Hospice isn't always "final." My mother went on hospice in April. After three months she "graduated" and hospice service was withdrawn, because she made unexpected progress. I think the extra care and attention she got with hospice is one factor that helped her recover. We will not hesitate to call hospice in again when it seems likely she is in the final lap of her journey.

You mother (and mine) has outlived the life-expectancy for her generation by decades. We are lucky to have these fine ladies with us for as long as we have.

Sandy, so sorry for you mom's decline. I'm very much in the same boat. Does your mom have a visiting wound nurse keeping an eye on her foot?
Thanks for the welcome and for your thoughts, Jeanne. She still has good days -- although they are far and few between -- yesterday was a good day for her. So I talked about the future and things we might do, and also reminisced with her about her childhood stories. Days like this make me think she's not going anywhere anytime soon. I think the last round of visiting nurses, while well intentioned, talked a little too much about hospice in her presence, which probably stirred some of the fear.
Ba8alou, Thank you for your comment. Yes, my mom had a visiting nurse for a while, and a wound nurse made one visit. Plus her podiatrist is very knowledgeable about wound care. The visiting nurse just closed her case after 3 months, in part because the wound wasn't improving and insurance will only pay for so much at home care. But I think I do a better job of managing the wound than the visiting nurses. It actually looked better the last two times I've seen it (when I change the bandage); hoping it will look even better today.

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