Oh, Peach, I'm so sorry you're journeying through this. You've gotten some excellent advice, so I'll send good thoughts and vibes your way.
That's a tough situation, PW. I am sorry for you and your family. One thing I can say is hospice is amazing. I don't know where they find these angels, but when my sister was dying, she did in-home hospice. They kept her comfortable, coached us through all the med stuff, and spoke to us in real terms about what to expect. She was in hospice for a month before she died (I was actually with her when she took her last breath), and I don't know what we would have done without all of them. Several of her team members came to her funeral. They were wonderful people who helped us through a very difficult time. Best wishes to you and yours. And a hug too.
Having been down this road with my mother in '99 and my mother-in-law in last year, I can only offer two thoughts. 1: what everyone is saying about Hospice is true. It made life, and death, much more manageable and comfortable for all involved. As Digits said, where they find these compassionate souls is a mystery and a wonder. 2: what if your mother is incapable of response but somehow cognitively aware? Is this the kind of lingering distress she would want for herself or the rest of the family. The sooner nature can take its course, the better it will truly be for all of you.
I'll echo what the others have said about hospice. How those people manage to find the strength to help all of the people that they do is beyond me. They are angels of mercy. You are your dad are having to make one of the hardest decisions that you will ever make. Maybe the best way to handle it is to ask yourselves if she were in complete mastery of all of her faculties, would she choose this procedure?
The decision, I think, has been made, that amputation must not be done. However, my dad is looking into getting a final diagnosis. I had a damned panic attack today, admitted to it and Dad got worried. I told him I wasn't sure why, but I know I have underlying stress that bubbles to the surface. Later he asked again. I'm thinking that if I can find the words, I'll write out what I'm feeling. I'm worried about him too...
Hugs Peach.. you are in my thoughts. I know it's hard to have to be the stronger one. It's a great kindness though, for those that need you.
An update: Dad is getting in-home care every other Tuesday for a meeting he has. That's a big step for him.
The in-home care thing seemed to go well. I'm glad of that. Dad also has all three of the neurologists that saw Mom talking to each other. He's looking at a final diagnosis.
I'm glad the in-home care thing is going well. Once your dad sees how nice those people are, he might become open to more assistance. The more help he's able to accept, the better off he will be.
I know that if we go through with it and Mom dies on the table, he won't forgive himself. If we go through with it... how much more pain is she going to be in? If we don't go through with it and the sepsis sets in... it doesn't help that I'm coming up to that time of the month and my mind is not entirely rational...
Hormonal or not, when dealing with these sorts of issues, one can NEVER be entirely rational. You have my deepest sympathy.
The hormones don't help matters. I'm going to the library and checking out more books. Maybe I can find something to help Dad and me. My gut tells me going through with the surgery would be horrid.
If it isn't out of order pulling out a Star Trek-ism, it's like the Kobayashi Maru test. No good options, the importance is in how you handle the situation.
^that's a very good way to look at it Ar-Pharazon. There is no definitively right choice and either choice sucks and has potentially negative consequences which are out of your control. Making peace with being in that place is something you and your dad will have to do over and over again.. that's what's hard IMO, you think you're okay with what you've decided and then the whole choice crashes over you afresh. This is normal. Hugs Peach.
The Kobayashi Maru was something I thought of at this time last year and in late 2014 when the shit really hit the fan. It's definitely appropriate. I came back from the library today and started reading a book on peripheral neuropathy and realized some of this started when I was about nine. Mom was hit with Guillain-Barre Syndrome when I was eight and after that, her feet and legs were never quite right. That didn't get the dementia going, but it did contribute to exacerbation of the diabetic peripheral neuropathy. ETA: I discovered last night and today that we were licked well before I was born. Mom started down the road of autonomic neuropathy when she was in her early teens. She experienced sexual response issues which doctors warned about back then but thought it was just a symptom of the diabetes.
I apologize for the thread necromancy, everyone, but I need to let all of you know how thankful I am for all the advice. It helped me help my dad make the right choices. On March 31st, Dad and I took Mom to a neurologist and set things in motion to have an MRI that would determine exactly what we were up against. The neurologist said that Mom likely did not have diabetic vascular dementia and nor did she have Alzheimer's. Spasticity that Mom had indicated something else, but the doctor wasn't sure. So we planned for the MRI and kept the plan for amputation on hold. On April 5th, Mom completely lost the ability to swallow and we took her to the ER on April 6th. The MRI that was on the books was performed, along with CT scans, blood tests and a couple of other things. What we found out was that Mom had white matter disease, hardening of the arteries and microvascular disease. The white matter in her brain was deteriorating, effectively shutting down systems in her body and so we made the decision on Saturday to move her into the hospice center for her final days. She was moved on Sunday, and members of our family came to say their goodbyes. On Monday afternoon, I sat in Mom's room and a wonderful gentleman came and played the harp for us to help Mom relax. Our good friend who's also been doing our hair for years came and told Mom it was okay to let go. A couple of hours later, Mom was dead. Dad was with her when she passed and told me she fell solidly asleep and stopped breathing. I had gone home to check on my dog and relax for the next school day, but raced back to the hospice. Mom had died peacefully which is something I'd prayed that God would allow. He said yes to this one, that Mom would go peacefully when her time came. There was no pain and she was finally free... Thank you, everyone for your help.