My LO has had Lewy Body Dementia,diagnosed 3yrs ago. He can't walk or take care of himself other than feeding himself. About 2 months ago he was diagnosed with Cirrhosis of the liver, not from drinking. Today his MD called to tell me he has Multiple Myeloma. Now what do I do? The MD recommends seeing and oncologist to stage him. I told him we didn't want chemo or anything like that but he kind of agreed with me but suggested it may be helpful to see the oncologist anyway.
I take full care of him 24/7. He's pleasant but doesn't talk much and really has no interest in anything. In my heart I know what to do (or what not to do) but wanted to know is anyone else has walked this path.
Love this site and have gained so much from it. Thank you all so much. Nancy ( We both have living will's and I know he wouldn't want to go thru all that may be ahead.
nancyt is you havent already i would suggest you bring in hospice and ask the dr about it. they can help you make hard decisions and make his/your life much easier now. he surely qualifies if hes got another serious condition on top of LB dementia. i am so sorry for the added stress. you know best how he would want you to handle this new complication. prayers for you both. divvi
Thank you for your input and the advice. In my heart I know the answers but still the decision is hard. Confirmation from others in the same situation is a blessing. God bless you all as we travel this path. Love, Nancyt
Oh, dear Nancy, I am so sorry. It sounds like you have made a decision, I'm in full support. I agree, hospice and the comfort care they provide will be best for both him and you. Blessings.
Nancy, they told me 3 months ago that in all probability my husband has renal cancer. He is in a nursing facility and the nurses, doctors, aides and I all agree that nothing will be done. No biopsy, no oncologist, nothing. He went for a follow up CT scan today which will hopefully tell us how fast it is growing and give some idea of a prognosis. When we have the results of the scan I will probably call hospice and try to prepare myself for the final leg of our journey. Hope you can find some peace and comfort.
I have not read the above posts so this may have been suggested but I think were I in your situation I would contact Hospice. Your poor dear DH has serious problems and I suspect you are thinking palliative care for him. As to the Oncologist, perhaps, for the benefit of other family members, it could be helpful to know if one of the cancers is the result of a metastatic situation especially as the liver condition is not related to an alcohol problem. I am inclined to agree with you not to put this poor man through the horrors of chemo or radiation. My sil is going through this now for lung cancer and it is a tough slog and she has no memory issues. I cannot imagine one with dementia going through this when the end result is not good at all. I had a friend who died recently of Multiple myeloma and he suffered with it for 4 years and the last year and a half was just beyond belief. I cannot imagine doing anything other than providing the best supportive care possible. Arms around you at this difficult time.
I am so touched and comforted by your postings. This is such a horrible disease. We've been married 48yrs and want only the best for DH. I don't want him to suffer on top of the dementia. I believe supportive care is the only way to go now. Bless you all.
My dw was diagnosed with breast cancer 3 yrs ago, and underwent radiation. With her progression with eoad, we have decided not to pursue any further treatment. -She did have a MRI two months ago which showed no abnormalities, but secretly, we were a bit disappointed, and will not pursue any further examinations. She is only 56 yrs old, but I think that it is preferable to have cancer rather than eoad. I guess she could wear a pink ribbon on the right side, and purple on the left, but those colors clash and it is hard to find the matching accessories for her..purse, shoes, clothes....I believe she is entering stage 7, and we are all rooting for pink....I hate to sound heartless, but cancer is a much easier disease to cope with...
phranque, you said what I have been thinking & wanting to post, but didn't have the nerve. I was thinking if I could choose I would have chosen for DH to get cancer & not this, but we don't have a choice.
Just checking in here this am.. Phranque..you are a jewelll.. Amen to everyone else's. I just can't imagine having to do anything aggravating to them at all..or dealing with the complications of chemo or radiation when getting through an ordinary day brings its own set of difficulties.
A friend's dad, mid-eighties, has a recurring anal cancer on top of heart problems and dementia. The wife, who is more rational, is agreeing to him going through chemo (as is he) and agreeing to his having a colostomy bag. Has anyone dealt with this with an alz. spouse? It sounds like a recipe for disaster for both wife and husband but she is determined and the daughter, my friend, can get nowhere with suggestions to hold back.
briegull, I think your friend may be in for a lot of caregiving. I assume the wife is also in mid-eighties and having chemo and surgery to accomidate a colostomy bag would be a recipe for disaster - my thoughts. My Mother had a colostomy bag for several years but she did not have cancer and she was able to take care of it herself until she was 91 and then I had to take over the care for it. She developed some dementia and would "pick at the bag and even remove it at times during the last few months she was alive. No way would I consider it myself.
I agree briegull - I would never allow it. To me it sounds like someone afraid to die or thinks he is otherwise healthy aka in denial about his dementia; and family members who do not want to let him go no matter what it puts him through. My heart goes out to all of them for what lies ahead.
pharnque..I have a ring with an amathyst and pink tourmalines...works well so yes the pink and purple can work...I wish those colors would give her a cure for both..the pink could but the purple .....it is so sad to see her suffer so.
One of the things I noticed in myself through the journey was that when a question/thought came up about treating my husband for things other than the AD, I tended to think in terms of how he was at that moment. That was okay for short term type of illnesses but long term - that is a lot harder as we know that they will get worse and that they won't understand something that was done to them now. I also realize that even if someone had told me how much worse the AD would get, I don't know if I would have truly understood. I had always said that I wouldn't treat. Having seen what I have of my husband's end and others, an AD end can be horrible. It can be long and very painful for them. Does it not come down to what is really better for them?