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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.

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I'm sorry for your loss I didn't see the post until after I posted.
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Reply to MartinaS
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I'm so sorry I feel your pain and my MIL had her right leg amputated and her children expect me to take care of her. I have for the past 3 years and now my health is getting worse. She is bareatric so if it's spelled wrong. I don't know what to do I am falling apart.
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Spccon, So sorry for the loss of your mom. She was so young, she is at peace now, and pain free. Please take care of yourself, you have been through a lot.
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Reply to Anxietynacy
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Spccon, I’m so sorry.
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Spccon

Condolences on the loss of your mom. Wishing you peace.
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Reply to 97yroldmom
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spccon, I wish you peace as you navigate your grief. (((hugs)))
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Reply to Hothouseflower
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So sorry for your loss.
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Reply to JoAnn29
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spccon (((((hugs)))) her journey is finally over. My condolences on your loss. I am glad she was peaceful and you were ready. She has a new life now and so do you. Take care.
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spcon, while I'm sorry for your loss, I also know that along with the grief, there is a sense of relief that you feel after your very long journey with your mother. And that is very normal and healthy.
I pray that God will now give you His peace, comfort and strength as you start rebuilding your life.
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Reply to funkygrandma59
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Hi, everyone.

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.
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AlvaDeer Oct 13, 2024
I am so glad you feel the peace I felt at the passing of both my parents, and at the passing of my brother. They had good long lives. Say what you will this is STILL the loss of your mother. And that is a life passage. My heart goes out to you in your loss, but Nora McNerney the other day said something that is so true. They are always with us.

Take care, spcon, and please stick around with us, update us on your journey. You can so help others doing so.
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What a blessing you’ve been to your mother. I’m believing she heard your words today. Continued peace to you both
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Reply to Daughterof1930
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((((spccon)))). Such a difficult time and yet it can be rewarding. I'm glad you were able to tell your mom she could go. That gives you more peace. I remember when my father was a little further along that your mom is, and I had to return home- across Canada to my kids who were little. We both knew it wouldn't be long and he passed a few days later. He had told my mother than he knew he was dying but he wasn't going to die before he saw me, so I went right away and spent a few days there with him. When I had to go, he said "Good bye". He never had said Good bye" before - it was always, "arrivederci", "sayonara", "au revoir". "see you later". His peace and acceptance was gift to me. May you have peace and acceptance at this time. ((((hugs)))).
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Saw Mom today. Breathing is now very labored with frequent pauses. She doesn’t quite have the “death rattle,” but I can tell breathing is becoming much more difficult for her. I’m guessing it’s not going to be long.

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.
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AlvaDeer Oct 12, 2024
Heartbreaking spcon. Thanks for taking us on this, your long journey. I am so sorry, but I hope you will feel a relief and a lifting and that you will be made lighter by not having to stand witness to your mom's suffering any more. What a blessing you are to her.
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So sorry, but love your attitude. This is what Mom wants.
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Hi, all.

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.
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Llamalover47 Oct 8, 2024
spccon: Thank you for your update.
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Please be careful of postings dated a year ago
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JoAnn29 Oct 9, 2024
The OP has been updating a long.
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Spccon,

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.
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spccon Oct 8, 2024
So sorry for your loss.
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So sorry.
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Reply to JoAnn29
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Thanks sp for your update. Sorry to hear this. This is a long slow decline. I know you don't want your mom to suffer. I am so sorry.
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Reply to AlvaDeer
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spccon - sorry to hear that your mom is declining. It's always hard news even if you know it is coming. Take care of you. ((((hugs))))
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Hi, all.

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.
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Daughterof1930 Sep 26, 2024
Thanks for update. May you and mom both have calm and peace
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Spccon, my mom pulled through from "near sepsis" from a UTI at 93.

Stay hopeful and (((hugs))) from me.
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So, she doesn’t quite have sepsis, but she has what’s called bacteremia, an infection of the blood. They found staph to be the culprit.

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.
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AlvaDeer Sep 19, 2024
Sorry to hear this update from you spccon.
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I think the hospital will give her IV antibiotics for the UTI.
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I’m so sorry you’re facing all this with your mom. I have no answers, just wish you both peace
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Reply to Daughterof1930
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your mom is 61? I’m 60. If I had to deal with having more and more amputations, I would choose hospice. Has this been explored?
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Update: NH called me Sunday night to let me know they were sending Mom to hospital due to altered mental state (that I noticed on Saturday). Hospital found a UTI that turned into sepsis, and she actually has encephalopathy that was triggered by the sepsis. That explains the altered mental state. The head CT found cortical atrophy, which is really concerning.
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Llamalover47 Sep 16, 2024
spccon: I am sorry to read this update.
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Hi, everyone.

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.
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Rumbletown Sep 14, 2024
could check thyroid.
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In my State of NJ each county runs their own Medicaid program. So if I liked a LTC facility in another county, I would need to go to that county to apply for medicaid not the county Mom lived in.

I think in that case, its only a matter of Moms paperwork changing hands. She will not lose her Medicaid.
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spccon Jun 11, 2024
Thanks! That’s what ended up happening. She was approved in the new county on Friday. It just took a while, as per anything with the state.
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Hi, all!

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.
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Isthisrealyreal Jun 5, 2024
spc, Medicaid is state, could it be that she had an advantage plan for insurance? Because those are county specific in many cases.

Just a thought.
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