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Comfort Care vs Curative care
~Lost~
Posted: Saturday, April 4, 2015 6:22 AM
Joined: 1/19/2015
Posts: 39


I realize this is a taboo subject. But sometimes the right thing becomes the wrong thing. I have been at this for 14 years. My mother has been in the hospital so many times, I have lost count. The care at the nursing home is getting worse. I am constantly fighting with them. What am I fighting for? Her condition will only get worse. My health will continue to suffer watching her suffer. The toll it has already taken on every aspect of my life will continue to get worse. I am considering Comfort care the next time my mother gets sick. Not sending her to the hospital and allowing her to die comfortably. But I am not sure how I will feel if I allow her to die. I have been giving it a lot of thought but it would be helpful to get some insight on those who have made this decision. Has anyone considered Comfort care and can you share your feelings with me. Thank you.
Mimi S.
Posted: Saturday, April 4, 2015 8:45 AM
Joined: 11/29/2011
Posts: 7027



Mimi S.
Posted: Saturday, April 4, 2015 8:49 AM
Joined: 11/29/2011
Posts: 7027


Well, isn't that interesting. What happened to my long reply?

Short version:

As a person diagnosed with Alzheimer's, this is a subject that should be thought about and your wishes put in proper legal form.

There is a huge difference between murder, assisted suicide ad letting nature take its course.

It's a good idea to have this discussion with someone at your local Hospice to see how this would be put into effect in each individual case'

~Lost~
Posted: Saturday, April 4, 2015 9:02 AM
Joined: 1/19/2015
Posts: 39


thank you mimi. i did speak to hospice. the decision is up to me now, what to do. my mom can still talk, and she still recognizes me, not as her daughter but as someone who loves her and she is very affectionate. it will be a hard decision for me to make. there is no more quality of life. for either of us. I would love to hear from others who allowed their loved one's to die, and see how they feel today about their decision.

Mulelady
Posted: Saturday, April 4, 2015 11:11 AM
Joined: 7/21/2014
Posts: 1164


Lost,
First of all I want to tell you that I am so sorry your mother has progressed to this point. At some point most of us have had to make some very difficult decisions.
When my mother in law was in the nursing home and life was no longer of any pleasure to her, we signed so that she got only comfort care. It isnt that you are killing them, you are no making them live. At the time that my dear Donald was diagnosed with alz, he made it clear that he did not want his life to drag on after the disease had robbed him of all his normal life. I treated only his behavioral issues and comfort.
Im sure that if your mother could speak for herself, she would not want to be kept alive in such conditions.
It is a very difficult decision to make, but once it has been made, it seems to bring a certain peace of mind with it.
Please know that whatever decision you make will be the right one.
I wish you the best and send a hug. Let us know how you are doing. Leanne

Sea Field
Posted: Saturday, April 4, 2015 11:41 AM
Joined: 8/5/2012
Posts: 1872


Lost,

It is Sssoooo hard having to make these decisions for another. I am sorry that you find yourself in these circumstances.

My mother passed from alz in 2010 after more than 10 years of dementia. She was in stage 7 at the time of her passing.

My siblings and I were fortunate in that all our lives she told us to never hook her up to machinery to extend her life. She even filled out a living will stating such. What she didn't address was how she wanted end stage dementia handled should that ever be the case. But we extrapolated from her earlier comments that most likely she would only want comfort care rather than curative at that point.

So when the time came, we signed the dnr and set up hospice. I have never once regretted this decision. I am pretty sure I would have regretted extending her time in late stage.

And now I am in the same boat with my husband who is in early stage 7. He too stated early on that if something came along that would offer him an early out from this disease (cancer, pneumonia, ...) to please allow it to happen. To not extend his life. I have filled out his dnr. And yes, I cried over it. But I feel I am honoring his wishes and offering a more gentle experience for him by not extending this any longer than necessary.

This is only one perspective. For others, curative rather than comfort care only may well be the better choice.

You can consider the different perspectives, but after all is said and done, I would recommend you follow your heart - whichever way that leads. When you decide things from the perspective of love, there is no wrong choice.


~Lost~
Posted: Saturday, April 4, 2015 12:29 PM
Joined: 1/19/2015
Posts: 39


Thank you both for your advice on this decision. It sounds to me like you both were very comfortable with your decisions. Very helpful knowledge.

Oceanbum
Posted: Monday, April 6, 2015 11:23 AM
Joined: 3/11/2012
Posts: 433


Lost,

I'm so sorry you are facing this decision. I lost my Mom to dementia nearly 3 years ago. We only had to make the decision after we found her unresponsive. At that point the doctor presented the options to us and explained each one throroghly. Then he said to us "When making your decision you need to ask yourself - Is this for me or for her?" He said it was totally understandable to want to hold on to your loved on for just a little longer but is it fair to them? That's why he said to ask yourself that question. He said it makes your decision a little bit easier. And he was right. When we looked at what we were going to have to put her thru just to keep her here for just a little bit longer, and the quality of life she was coming back to we decided she wouldn't want that. She would have said "It's time. Just let me go."

Then, in a completely different scenario in December I lost my Dad to cancer. I was his medical power of attorney. He chose to have no chemo, and comfort care. I had to sign the papers for it. It wasn't easy to be the one to sign the papers. But he was the one who made the final decisions. All I had to do was sign. I honored his wishes and that did make it so much easier.

Follow your heart. It will lead you. Hugs to you.


King Boo
Posted: Friday, April 10, 2015 12:37 PM
Joined: 1/9/2012
Posts: 3523


About a year before he passed, the though of putting my father through another hospitalization was horrible.

The more I thought about it, the more convinced that I became that choosing a hospitalization for most issues would be a wrong choice. How frightening for Dad; how unnecessary all the needles, the poking, the tests, the confusing noisy environment, the hospital delirium.

So, we chose palliative care, and evaluated each situation on a case by case basis.

Then came hospice. A wonderful, life changing event for both Dad and I. I will talk more about it at a future date.

I couldn't keep him alive forever; but I needed to make choices for HIM, not for ME. In his final illness, I could have panicked and set him to the ER for bleeding that was making him weak. But to prolong a life via such measurses, only for another few days. . . .seemed wrong.

And so it went.

See hospice professionals for a view into what it means. . . .


Oceanbum
Posted: Monday, April 13, 2015 9:52 AM
Joined: 3/11/2012
Posts: 433


King Boo,

Your post did touch on a subject I didn't really mention too much in my post. When Dad was in the hospital he started out in the ER. We took him there by squad because we thought he was getting dehydrated. He had lost his appetite, wasn't eating or sleeping and just seemed out of sorts. We even thought he had maybe had a small stroke. We never thought for a second about cancer. I mean this man walked 3 miles a day, had a heart as healthy as anybody half his age if not healthier, he was just a little run down and had been depressed over losing Mom. We were stunned when the doctor said he was looking for cancer. Then to find out just how much it had spread throughout his body was such a devastation. It was 11 days from the day we took him to the ER until the day he passed. So we went from ER, to hospital care, to palliative care, to the next day would have been hospice care. Once the doctors told him that there was no surgery that could help him, and chemo would only make him sicker if it didn't kill him at that point he chose comfort care. From the time they moved him from a hospital room to a palliative care room things changed drastically. No more taking blood, no more tests, no more poking and prodding. Only a very regimented pain medication schedule. They made sure that he had the pain meds he needed when he needed them. Our family had full and total access to him and the nurses and doctors at all times. We had family members with him around the clock the whole time he was in comfort care. The doctor we had in comfort care was awesome as well. He gave us everything straight up and didn't sugarcoat anything. He told us what to expect and pretty much when to expect it. I can't say enough about our experience with palliative care. And our experience with Hospice with my Mom was just as positive.


~Lost~
Posted: Thursday, April 16, 2015 11:19 AM
Joined: 1/19/2015
Posts: 39


Thank you for your feedback. I am most interested in how you feel today about your decision. I am not conflicted about choosing Hospice or not, it's the decision to choose Comfort Care that I am struggling with. Would love to hear from those of you who chose it and how you feel about your decision today. Any regrets?

Mulelady
Posted: Thursday, April 16, 2015 6:39 PM
Joined: 7/21/2014
Posts: 1164


Lost,
Today marks 7 months since Don passed away. I miss him terribly, but would not have wanted him to spend even one more day with his disease. As much as I would love to have him with me, it was not life for him. I regret only that he was unfortunate enough to have alz.
Leanne

socwkr
Posted: Thursday, April 16, 2015 9:01 PM
Joined: 10/6/2012
Posts: 924


Lost, I found it to be tremendously helpful to read the document about difficult decisions that caregivers need to make.
https://www.stjosephhospicefoundation.org/images/pdfs/HardChoices.pdf
When my husband quickly developed a stomach virus that turned into pneumonia, my daughter and I read and re-read that document a few times.
The MD at the nursing home advised us to transfer my husband to the hospital, but for what? He was late stage 7, it was the dead of winter, about 5 degrees outside. I couldn't imagine how horrible it would be for him to get all bundled up, being transported in an ambulance, going to the emergency room, being assigned a room, all new staff, and who knew what types of procedures they would recommend that I might decline? That just sounded horrible to me, so stressful for my husband. So, we talked to the MD about what might happen if my husband was transferred to the hospital or if he was treated at the nursing home with oxygen, antibiotics, etc. We opted to keep him in the nursing home, and the staff there applauded our decision. Two days later he passed in his sleep, nice and cozy in his bed, loving people around him. I had fed him some pudding and soup that night and gave him lots of kisses, told him how important he was to me. We made the decision based on what my husband would want. It was the end of his life so why would I want to prolong what would eventually happen. Of course, I miss him terribly everyday but his life ended well.

Best wishes, Debra.