I haven't seen many posts about end stage alz. My husband is in the end stage. He can't walk and had pretty much stopped eating. At the facility where he stays at they suggested to take him to the hospital for hydration. He was in the hospital for four days. It did seem to help him some. He's eating a little better and his face looks better. I talked to his hospice doctor and he said that my husband has maybe two months. We just keep hoping he'll eat better, but ...... I asked the doctor if my husband stops eating again, can we take him to the hospital for hydration again. He said we could, but he said, "Why put him thru that again?" This is soooo INCREDIBLY hard. I go every day at lunch time to feed him, hoping he'll eat better. I know I should ask the doctor, but, it's like, you don't really want to ask. If he stops eating again, do his organs start shutting down? He's also had strokes. Can anybody tell me what happens. He's had other medical problems-prostate cancer surgery, a tumor in his head. It was so hard to put him on hospice but he's been thru a lot. He's only 70 years old. Thanks for any information.
I am sorry that it seem that your husband is getting near the end. But, if he is on hospice care already, they should be giving him pain meds, he he even moans or cries or groans. My mother in law dies of cancer and was on hospice and at some point they quit eating. The nurses and the doctors told us that not eating does not hurt. They are not hungry. So, do not force your husband to eat, if he does not want to.
Hospice is only pallative care. Meaning just to make the patient comfortable and not give ivs, such hydration, it just prolongs everyone misery. Yours, his and anyone else that care about him.
I am sorry, but I hope that you know when he is ready to let go. I know it is hard for you. But, he will be much better off in another place.
My dad is not at that stage yet but I want to send my thoughts and prayers to you and your dear husband. He is so young for this. To have gone through all he's gone through and still be here, he must be one strong person.
Jsvn, take care of yourself and know that whatever decisions you make for your husband, you make them out of love. And that's the best you can do for him.
Over in my little neck of the woods, when the doctor diagnoses "last stage" the patient is taken off ALL medications and, if required, only given palliative morphine. They are offered fluids, given mouth swabs, offered food, but if they resist we are not to force.
Doctors diagnose "last stage" when the patient is unresponsive, looks exhausted, when carers notice a big 'downfall' in behaviour, looks etc ..
And that's where the palliative care kicks in. We make them as comfy as possible, we play gentle music in the background, dim lights, as I said, palliative morphine (dr. defines the dose but we had a tiny gentleman on 2.5mg as needed - that's a tiny dose - another gentleman last year was on 5mg every 2 hours, each case is different), thickened fluids are offered but usually rejected, we have special flavoured swabs to clean their mouth out, and they usually just suck on those ... but that's it. No more forcing them .. they are allowed to slip gently away . . . there is usually somebody not far away either, and you find that the staff tend to hover around the room and steal moments here and there with the patient, so as to make sure their NOT alone at the time of passing (that being said, it doesn't always happen either). Family are invited to come and spend as much time as possible, not talking, but sitting there holding a hand, wiping a brow, just being there.
It's NOT a nice time, far from it, but it can be made tolerable for everybody.
I do feel for you with your husband apparently at end stage, Jsvn. And your mom, Martha. I think Angel Bear said it best! We love them and do not want them to go, but hopefully the NH, will make it the easiest way possible.
The end stage is the hardest in many ways because we know it is coming soon and we must say our final goodbyes. Doctors rarely get it exact of course, but I found that the hospice workers were so much more able to predict the time which I guess is from experience. I was the caretaker for my Nana since she stayed in assisted living. With the care of wonderfully kind staff, volunteer church ladies (she was a devout Christian to the end), and hospice we were able to make her last week very comfortable. At first I would give her ice chips if she seemed ok with it a few small bits at a time to cool her mouth and give her some hydration, but other than a minimal amount of pain medicine she appeared quite at peace to lay on her side and let you stroke her head, or moisten her lips with special swabs. The church ladies often would drop in while I was at work and would read encouraging scriptures and psalms, and one particularly sweet cna would sing hymns for her as she changed her bedding and diaper. I was able to feel a great measure of comfort knowing that her wishes to not have any unnecessary measures to prolong her time were honored and she was allowed to slip away quietly while a lady was praying over/with her. I was sad to have missed her passing by minutes, but knew she was beyond this world and healthy and happy again. She never exhibited pain from not wanting to eat and had gone entirely on Ensure 2weeks before passing. My mother died 4 years earlier of cancer, and she too lost her appetite and was content with ice chips and eventually just the moistened swabs. I know this is such a hard time for you, but know that the pain of this life is going to become the joy of the next. You are in my thoughts and prayers.
Thank you so much for sharing your Mom's and your Nana's experiences. Now I have a better idea of what to expect when my Mom gets a little further along this road. I plan to be with her as much as possible at that point ...
You are so welcome Martha. It has taken me a while to deal with losing my mother, grandmother and great grandmother in a 4 year span. I became the "matriarch" of the family at 34. I know that it helps to have any information to guide you in something that most people have little or no experience in. I hope I give positive and hopeful information to others when I post and any time it helps someone it makes all that we go through understandable and eases some of the pain. Take care and enjoy the good times, forget the bad times and take care of yourself too!