My guilt is flaring again! Any words of wisdom?

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My guilt is flaring again! Any words of wisdom?

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I've been on this forum before with several different requests for advice, reassurance, etc. It has been so helpful to me to read what others are doing to cope with similar difficult times. So I'm ba-a-a-ck!

My 95-year-old dad has vascular dementia, legally blind from macular degeneration, very hard of hearing, & several chronic conditions which have been, up to this point, fairly well controlled. He has lived in a MC facility for the last 2 years. About a month ago, dormant peripheral arterial disease in his left leg has drastically increased & he has developed gangrene. The treatment is futile & above-the-knee amputation has been scheduled within the week.
He requires much assistance to transfer & now probably will be confined to a wheelchair. He has minimal understanding of how bad is his condition due to his dementia.

I have confidence in his surgeon, who carefully & kindly explained the situation, for which there are no good options for treatment, while dad was present. However, how much dad grasped is questionable. Now I have to transport him to the hospital next week & tell him what is going to happen & why. I'm fairly sure he will get very upset - who wouldn't? The guilt is killing me! I HATE that he has to go through this! He was never a tough guy & I think this will crush him! Another example of what could happen when people live too long!

Anyone else faced this? Words of wisdom?

Care Decisions Guilt Senior Health

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PeggySue2020: The MC can give narcotics if they are prescribed to be given at set times, like his regular routine meds, The hospice nurse got an order for oxycodone yesterday to be given twice daily, spaced out.

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Thanks lealonnie, glad, zippyzee, Margaret MC, et al. After much thought, prayer, & conversation with my pastor, I requested a hospice eval & both surgeon & primary care were most helpful. Dad is now in hospice care & being helped by what appears to be a great team. His foot looks terrible, but doesn't seem to bother him too much except when the dressing is changed. As you all have said, it doesn't seem to be humane or make much sense to amputate. My biggest concern with surgery is what happens after. He would be hospitalized, then I'm told he would go to rehab. REHAB! Really? I don't think that would accomplish anything & would only add to his confusion. Also after rehab he probably would need to go to long term care & that would REALLY be bad! Considering staffing shortages, among other things, I hate that idea. I haven't ruled out surgery totally, but would only resort to that if his pain is uncontrollable any other way. Another concern is how long can Memory Care care for him. He needs lots of hands on care. I have told the Memory Care Nursing Director & Executive Director to advise me when his care needs exceed what he can provide.

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Ask the MC how they work with hospice. How do they expect their duties to change?

And then ask your hospice what happens when morphine alone isn't enough for breakthrough pain. Will they prescribe Opana lollipops or oral Diluadid or just morphine? Is the MC ok with dispensing SII narcotics (morphine also is), and if not, who on hospice will be charged with doing so?

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The pain after the surgery and rehab won't be all that great either. My GF was 60 when she lost her leg. Even after she received pain management, she suffered from ghost pain. This is when the brain still thinks the leg is still there. And no guarantee that the gangrene will not come back. With all you father's problems, I would not even consider surgery. And how are you going to explain all this to him.

I too think that placing Dad on Hospice is a good choice. He may need to be transferred from MC to LTC but that u can be discussed with the MC director. He will be given Morphine for his pain. I think you are just prolonging the inevitable.

I would bet if Dad had known how his life would go, he would not have agreed to this.

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I agree. At 95 why put him thru this? Get him on hospice and comfort care. Bless both of you… Such a difficult time for you and such a difficult choice but just remember one thing these are loving choices that we have to make for our elders

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PS: Not to hog the comments here, but I just noticed your header saying your guilt is flaring again. Why would that be? You didn't cause dad's health crisis! In fact, you are doing everything humanly possible to help the man! He is very fortunate to have you in his corner to be helping him & advocating for his excellent care moving forward. There's only so much you CAN do, you know? Of course you hate that he has to go through such a thing, who wouldn't? I remember when my father was diagnosed with a brain tumor; I felt so helpless but not 'guilty'. When the doctor's said there was nothing more they could do for him, I felt relief actually, b/c that's when I could have hospice take over to ensure his comfort. While that's a sad acknowledgement of impending death, its also an acknowledgement of a long life and the need to see a peaceful transition occur.

Please try not to add to your stress now by feeling any level of 'guilt' over what is happening to dad. Let yourself off the hook for that as you move through this difficult period of time. Wishing you the best of luck.

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Thanks all for your comment & ideas. I may have a talk with the surgeon's office to get further clarification & mention hospice.

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Just remember one more thing, surgeons are there to perform surgery. They aren’t always thinking about what’s best for you or your loved one. I have a lot of respect for all doctors as my son-in-law is a cardiologist but these are the facts about surgery versus medical intervention and comfort care.

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Prognosis is poor without surgery & may drag out for months causing further complications. Hospice needs all kinds of orders before they will evaluate. Weird, but that's how they operate.

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Hospice needs one order written to evaluate a patient: from a doctor. That's it. If you run into problems, find a different hospice organization. I would def get a second opinion AND a hospice evaluation BEFORE getting dad this amputation surgery. Just so you feel like you've covered ALL bases before going forward.

I'm so sorry you & dad have to face such terrible choices. My heart goes out to you and I'm sending you a virtual hug and a prayer that God has mercy and takes Dad painlessly and quickly, before he has to undergo more suffering.

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Prognosis is poor with no intervention & may drag out for months. In all likelihood he would need to have an amputation anyway. TBH (& I hate to say it) but the best thing may be for him to pass away during surgery.

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Its not a given he would die during surgery. He could come through that and then simply be more compromised.

We opted years ago for a bowel resection surgery as my MIL did not want to live with a colostomy bag. She was 90 and really was tired of living. She survived the surgery but suffered a massive stroke several days later and passed soon after. My husband did not regret his decision as she was miserable and also kept forgetting she had the colostomy bag.

I think hospice would be best in this situation. At some point quality of life outweighs life itself.

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What made you try a curative approach rather than a comfort care one?

Which direction would be less painful?

Which direction would be less burdensome?

Which fit with his life values?

Basically, definate hospice care & pass away. Or amputation, possible recovery, unknown timeframe of much reduced quality of life, then hospice care & pass away.

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The surgeon went over all aspects & is well aware of dad's comorbidities. He explained that letting the condition go as is will ultimately make him septic & just don't know how long that would take. There is just no circulation to work with. Also the pain would be severe & difficult to control. Whereas the amputation would provide treatment that he may end up needing anyway even after conservative measures. Pain would be easier to control with the amputation. A below the knee amputation would work only if he is able to keep his knee straight, which he won't be able to do. This MD does NOT need to troll for surgeries. He understands that this is drastic & not desirable, but given the situation it is the best of several bad options. I don't think he believes that dad will live much longer, but you never know.

Our local hospice needs an MD order before they will assess & I know this will be in the future.

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A major amputation is absolutely awful to go through in even in the best situations; I can't imagine how horrible it will be for a 95 year old with all of your Dad's conditions.

I'd call hospice, it may be kinder just to let nature take it's course.

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I would love to let nature take it's course, but that could drag out for a long time. You can't imaging how hard this is for me, my husband, & brother. Makes me sick.

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Freddie, I'm glad you're ba-a-ack, and I hope the words of wisdom help. You may have confidence in this surgeon, but it would be a good idea to get a second opinion (perhaps from hospice?) before you go ahead. Sometimes really brusque medicos with a poor bedside manner can be truly 'on the money', and the guys who come across best are really 'there for the money'.

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Thanks for your response. I'm aware about the various MD recommendations & what might be behind them. A second opinion does not seem to be an option right now - it would mean a trip of about 30 miles & he is very difficult to transport.

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An above the knee amputation for a 95 yo dementia patient??? That sounds outrageous to me. How can he possibly return to the MC? I'd think he would need Skilled Nursing at a minimum afterward, after a very long recovery in rehab. He'd be a 2 person assist for everything! I would seriously look into a hospice evaluation before putting him thru such a traumatic and terrible experience. My 63 yo SIL had a below the knee amputation and was never fully functional again, honestly.

Good luck.

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Has he been evaluated for hospice? This surgery will be very hard on him and will likely cause further, sudden and drastic decline that he may or may not recover from.

What is the prognosis if he does not have the surgery?

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My guilt is flaring again! Any words of wisdom?

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