So very weary...

fmb · July 14

Visited DH today for a couple of hours. Not very responsive, couldn't get him to look toward me while taking a picture. Last week he was tapping his hands on everything (table, his legs, etc.) Now he's rubbing the palms of his hands constantly. Then he started rubbing my hands. Aide says he is eating everything but has to be hand fed because he's just pushing the food around the plate. She said he was talking yesterday. Talking very little today, just single words, confusing "yes" and "no". Dark urine, but could just be dehydrated. I gave him some water, and he drank it all. I'm suspecting yet another UTI. Wondering if it is time to just let nature take its course. Does that make me a bad person? No easy answers.

Crkddy · July 14

fmb, of course you are not a bad person - your feelings are only natural and are common to most of us here. You are doing the best you can under the most difficult of circumstances. Unfortunately, nature is going to take its course with this disease regardless of our actions and best intentions. Best wishes to you.

Denise1847 · July 14

Dear FMB,

You are not a bad person. Why let him suffer any more than he has. I would want that for myself and I cannot imagine anyone in that state wanting to continue to live.

midge333 · July 14

I am so sorry! Wanting your DH's suffering to end does not make you a bad person. Obviously, you love your DH and want the best for him. I think it is reasonable to forgo treatment of UTI (and pneumonia) in end stage dementia. Have you consulted hospice?

Judy.T. · July 15

You are not a bad person for wanting this pain to end. I have taken my DH off all medications and started Hospice. I was feeling guilty but then my daughter said. " Mom we love our pets, right? Yes, When they came to the end of their life's journey we kindly & lovingly gathered the whole family, gave them their favorite meal, surrounded them with love and compassionately ended their pain. We did it because we loved them and didn't want them to suffer. Shouldn't we show Dad the same love and stop his suffering? Everything that is ever born will die."

It is still hard. Remember we are all doing the best we can and the best for our loved ones under these conditions. Don't feel bad.

Pat6177 · July 15

You are certainly not a bad person. Someone on this forum recommended the following book and I got the kindle version and read it. I found it informative and it helped me to understand what the effects of our decisions are on our loved ones approaching the end of their lives. Maybe this will help you to be comfortable with your decision. The author’s mantra is to “let go and let it be”. It is a short and to the point book. It says the print version is 88 pgs.

Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness, 6th Ed. Paperback – April 24, 2016

by Hank Dunn (Author)

fmb · July 15

https://alzconnected.org/discussion/comment/215869#Comment_215869

Thank you.

I have always been someone who fixes problems, and I just can't fix this. Rationally I know he will die regardless of what I do or don't do. It is just so hard to accept emotionally.

fmb · July 15

@Denise1847

I also would not want to suffer like that. With ten blood relatives having had ALZ, Lewy Body or Parkinsons, I have given a great deal of thought as to what I might do if diagnosed myself.

I think my current feelings have as much to do with wanting my suffering to end as wanting his to end.

fmb · July 15

@midge333

DH has been in hospice care since Thanksgiving. He has had at least four rounds of Ciprofloxacin for UTIs since then ( due to a chronic indwelling catheter). I did speak with his hospice nurse this morning, and she does not think he has a UTI at this time, and wants the ALF to provide more liquids.

I do think that the next time he does have a UTI, I am going to discuss not treating it. I just don't want him to suffer needlessly, either.

fmb · July 15

@Judy.T.

Thank you. I have long believed that as a society we treat our pets much better than we do the most vulnerable of our population.

midge333 · July 15

https://alzconnected.org/discussion/comment/215945#Comment_215945

That is very normal. If we were all honest with ourselves, we would admit that we want our suffering to end as well. It has been nearly a decade for me and I just want it to be over - for my DW and for me.

@fmb: You are not a bad person because you want it all to be over!

fmb · July 15

@Pat6177

Thank you for the book recommendation. I found "Making Tough Decisions about End-of-Life Care in Dementia" by Anne Kenney, MD, to be very helpful. I also read the classic "Being Mortal" by Atul Gawande, MD. It was real eye-opener for me.

We do have a very knowledgeable and compassionate hospice team, and I plan to consult with them soon to discuss DH's future.

ButterflyWings · July 15

@fmb FWIW, Cipro did not work for my DH's UTIs but a culture was done once before he was on hospice, and they selected a different antibiotic due to what the culture indicated. That med cleared the UTI.

I would not want my DH catheterized (is that a word?) if it comes to that, as it is easy for me to identify what would be considered invasive procedures at this point. (I know your LO already had that indwelling catheter and now you are just trying to make the best of things - no judgement here.)

I mention the obvious interventions I'd have no problem declining now in early Stage 7 because I am finding it much harder to say 'No' to simpler things like another round of oral antibiotics for suspected UTI, or to catch suspected pneumonia early, etc. I do not believe our hospice agency is trying to prolong anything — I believe the compassion and genuine love for my DH is going to lead his regular nurse to always recommend something technically comfort care-related that maybe not be pursued by a different hospice agency or even a different nurse.

So I am realizing it will definitely be up to me to initiate the "ok, its time for us not to prescribe any more antibiotics - just pain meds and oxygen + nebulizer when needed". I guess technically at some point even the nebulizer might be considered prolonging the inevitable but I just cannot see him suffering and struggling to breathe due to his longtime chronic asthma. No easy choices here.

GothicGremlin · July 16

Hi @fmb

No, you're not a bad person at all. You're a very caring person.

I have always been someone who fixes problems, and I just can't fix this. Rationally I know he will die regardless of what I do or don't do. It is just so hard to accept emotionally.

This is exactly me - always the problem solver. Since probably my 30s, I've been the one family and close friends call.

But dementia? I couldn't fix that. It was completely out of my control, which, as you say, makes it hard to accept emotionally. It was relentless, and it was always going to turn out the way it did, whether I accepted it or not. Coincidence: I called hospice the day before Thanksgiving. I spent Thanksgiving Day-Friday-Monday getting Peggy accepted.

Are you happy with your hospice team? I always felt our team was on it - not prolonging Peggy's life, but not shortening it either. They really were making her as comfortable as they could.

Denise1847 · July 16

https://alzconnected.org/discussion/comment/215949#Comment_215949

amen that that.

ghphotog · July 17

It's very difficult and I'm torn between letting things go and keeping her safe. She is in late 6 or early 7 and I don't want her to go through the pain from a serious fall or anything else. UTI's I will treat and and when it comes right down to it I don't know how I will handle anything more serious.

When my mom was in hospice she still was in pain until the end. They didn't start giving her morphine regularly until the last two days. I wasn't impressed with the hospice company but it wasn't worth changing. They did try to keep her as pain free as they were allowed to but she still was very uncomfortable to the end.

fmb · July 18

@ButterflyWings

DH's original catheter was inserted on Oct. 1 in the ER when he had collapsed on the floor at home with his heart in A-fib. He was so weak that he could not sit up to use a handheld urinal. Having BPH and a latent prostate tumor, I would never have voluntarily allowed him to be catheterized, either. He has since been unable to void sufficiently without it.

Cipro was first given to him in the hospital Oct. 31 when he presented with a severe UTI (pseudomonas and another bacteria I can't recall). Since he is now in hospice care, they do not perform a urine culture. It would be impossible to get a clean sample anyway because the catheter itself is contaminated. When Bactrim did not work, Cipro was prescribed again and seemed to work for a few weeks. The antibiotic is prescribed for comfort purposes.

So I am realizing it will definitely be up to me to initiate the "ok, its time for us not to prescribe any more antibiotics - just pain meds and oxygen + nebulizer when needed".

That is where I am at. Knowing when it is time. Our hospice team is wonderful. The care and compassion they show him and me is such a blessing. His RN has been a hospice nurse for nearly 30 years. I know they are gently leading me down the path to the inevitable conclusion. I need to try to quit second-guessing every situation and rely more on them to guide me.

Thank you for your insight.

fmb · July 18

@GothicGremlin

Thank you. You really get my feelings of frustration and powerlessness in this situation.

fmb · July 18

@ghphotog

I don't know how I would handle anything serious, either. With DH being immobile and in a Broda chair, he cannot fall on his own. I just pray the ALF aides don't injure him transferring him with the Hoyer lift.

So far he is not complaining of pain nor showing physical pain signs. I will not hesitate to ask for pain meds when the time comes that he does need them.

fmb · July 18

Yesterday I went to the hospice-sponsored caregiver support group, and it ended up being just me and the facilitator (an experienced hospice social worker). We talked for two hours. She encouraged me to talk to DH's nurse to learn the medical consequences of various possible future scenarios (UTI, aspiration pneumonia, kidney failure, exacerbation of his CHF, etc.) if left untreated with comfort measures that also prolong his life. I don't want to have to make any decisions in the emotion of the moment of crisis.

I also wrestle with the idea of "playing God" in allowing or withholding treatment, and plan to talk with the hospice chaplain. He has been a great comfort to me in dealing with my grief.

Speaking of grief, I learned this afternoon that my ex-husband (and father of my sons) passed away Monday at the age of 64 from an autoimmune disease. After 17 years of marriage, we split 24 years ago. it was an ugly divorce, and we had not spoken for years. Nearly all of his family rejected me, and my sons have had no relationship with me for many years. His brother (a priest) called to inform me of his passing and invite me to the viewing and funeral Mass. So I have added another layer of grief on top of that I already have for my DH and mother (stage 7 ALZ). My only prayer is that God might use this tragedy to bring my sons and me back together.

ButterflyWings · July 18

(((fmb)))

So very weary...

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