My mother (60) has had bad complications with her uncontrolled diabetes for about two years, now. It started in 2021 when she had her toes on her right foot amputated, then her toes on her left needed amputated due to non-healing ulcer. Earlier this year, she needed a BKA on her right leg because she refused to properly care for her foot, and the infection then returned and spread up her leg. Now, several months later, she’s having complications with her left leg.
A doctor called me yesterday afternoon to let me know she has necrotizing fasciitis on her left leg that is extending all the way up her thigh, and he fears she might need an above-the-knee amputation on the left leg.
When my mother had her other amputation earlier this year, she told me she never wanted another one; she just wanted to let the next infection kill her. I haven’t had a chance to talk to her since her admission to the hospital (they said she’s been really “out of it” as one could imagine), but I would believe her thoughts are the same. She’s been severely depressed for several years and has seem to given up on life. I convinced her to get the last amputation, but I fear I did the wrong thing because she’s just been miserable ever since.
Now that it’s likely she’s facing another amputation that she’s likely going to refuse, what should I plan on doing? Is hospice care the way to go? Who sets that up? The hospital she’s in right now? I just feel at a loss and don’t know what to do at this point.
Thank you, all, for listening to my rambling. I am just so happy that it seems to be a good fit for BOTH of us and not just me.
It’s uplifting and encouraging for others to see that there is hope.
Please continue to update us on your mom’s progress. It’s delightful to read about situations that work out for the best.
This was the best decision for you and your mom.
You placed a smile 😊 on my face with your post!
Had our first care conference today. It went well. Mom is getting therapy 3-4x a week, which is great.
One thing I am a little worried about is since this is a different county, they had to alert Medicaid, as I expected. The admin at the NH said she was still “Medicaid pending” and I was wondering if there could be something wrong? I’m trying to think how one county could get it approved and another county would have issues or if nothing’s wrong and it just takes a while.
Just a thought.
I think in that case, its only a matter of Moms paperwork changing hands. She will not lose her Medicaid.
Long time, no real updates - which is good, I guess.
This new facility has been pretty good for Mom. In the last month or so, however, I’ve noticed a hefty decline in her awareness/mental acuity. In my visit last week, she was asking me how certain family members (who have been dead for several years) were doing. I’d tell her that they are no longer alive, and she would say, “I don’t know why I keep forgetting things.” She also has been moving so slowly in her bed and isn’t able to even shift her body or adjust in the bed.
Today, when I walked into her room, she just stared at me. I asked her if she knew who I was, and she just lightly nodded. I wasn’t fully convinced she even knew me. I sat there for about an hour, and she was just silent—almost mute. I asked her some questions, and she just stared at me. It was really eerie. It’s like someone had taken over my mother’s body. I brought her some food but ended up taking it home with me because she was so out of it, and I was worried she wouldn’t even realize it was there and would spoil.
It was so bad. I have a care meeting this week, and I’m going to bring it up with them. I wonder if she’s getting dementia at just 61 years old. I also wonder if it’s severe depression, and she just doesn’t care.
Is there anything specific I should ask, any tests? What I saw today really disturbed me. I don’t think it’s anything they’re doing wrong, but she’s just acting so out of character.
They did a TEE today to check her heart because these infections often attack the heart, and they found she has early endocarditis.
Hopefully the antibiotics work quickly, but I’m honestly worried about how much she comes back from this. She’s still practically unresponsive. I’m going up to see her after work.
Stay hopeful and (((hugs))) from me.
Mom is getting the treatment she needs in the hospital. Her mental status is still really bad. The palliative team contacted me today to ask me about her baseline, and I told her that she is normally alert. They said that she isn’t getting better in that regards and told me she might have to go on hospice. That’s where we are at this point. Sucks, but I knew it was coming.
I'm so sorry for what you are going through, and for your mum. She has been through so much already that the best and kindest thing you can do is ensure that she is comfortable. I would say yes to any drugs to ease her pain and any agitation she might experience.
When my mum wasn't communicating, I found that singing to her soothed both of us, or playing some of her favourite songs. Perhaps you could find something that would suit both of you.
I firmly believe in quality of life over quantity. I also believe that our lives have meaning, no matter how short, and no matter what mistakes we may have made.
My mum's funeral was today (she was 76 and we had lost her slowly to brain atrophy/dementia since her stroke at 63). I found that remembering the small acts of kindness and compassion (along with her acidic tongue and dark sense of humour) for the eulogy, really helped me to feel more at peace about losing her. I found myself smiling while crying when remembering her.
I wish you strength, acceptance, and peace on your journey.
Another update. Mom is officially back in the NH on hospice. Met the hospice nurse today to go over everything, and I think she’s going to be a great fit for my mom. I asked her how long she thinks we have, and she said it’s looking as if it won’t be long before my mom passes.
I totally agree with her assessment because it was so pitiful seeing her how she was today. She just stares and then falls asleep. Almost a prisoner in her own body. My mother, who was once so full of life and ambition when I was a kid, is now just waiting for her last breath. It’s so darn sad.
The thing that’s giving me solace is I’m following what my mom has told me to do all along-let her pass. And that’s what we’re doing. We’re making her as comfortable as possible.
I finally found the courage to tell her that it was okay for her to go and be reunited with my father. I know a big chunk of her died the day he committed suicide. I told her I’d be okay and would always hold her in my heart.
Mom passed this morning at 5:05. I woke up at 4:00 and knew it was coming. I just prayed and thought good thoughts. Got out of bed and went to the bathroom around the time of her passing and came back to a voicemail from the NH and knew it was “the” voicemail.
Got dressed and went to the NH to pack her things. She looked so peaceful in her bed - as if she just passed during her sleep. It was so surreal just looking at her and feeling her. My mom - now just a body.
Thank you, all, for your best wishes over this journey. It’s been going on for quite some time. I’m glad she’s no longer trapped in this life and pray that she’s happier in the next.
Take care, spcon, and please stick around with us, update us on your journey. You can so help others doing so.
I pray that God will now give you His peace, comfort and strength as you start rebuilding your life.
Condolences on the loss of your mom. Wishing you peace.