Two comorbidities- Alzheimer’s and Leukemia

Brokenhearted in Illinois

Just as I was in the process of relocating , and setting s deadline of placing DH in memory care , the hematologist has offered a treatment for DH that would give him a 50/50 chance of remission. Problem is DH is stage 6 and does not even realize he has cancer. Yes the trestment has side effects which cciukf Aldo advance the AD. Has anyone been in this situation? What did you do ? The doc has concerns about Giving chemo to a patient who does not understand what is going on. Any advice is appreciated.

Brokenhearted in Illinois

I forgot to emphasize that DH says he still is enjoying life. Problem is I do not think I can make it through six months of weekly treatments with him and everything that goes with that. We have no family to support me or him with day to day challenges.

M1

If i were in your shoes i wouldn't treat it. My partner is now early stage 6 and has an indolent lymphoma that has never yet required treatment. She has forgotten that she has it, and she hasn't been to the oncologist in over two years. I have made the decision that I will not seek treatment for it if it recurs or transforms. She wouldn't have a clue, and honestly i would be relieved that she might have an off ramp (those were Butterfly Wings' words) from the ravages of dementia.

trottingalong

My mother in law was diagnosed with lung cancer when she wa at the point of not recognizing who her children or husband was. Collectively, the family all agreed it would not serve her well putting her through radiation and chemo. It was a good decision.

Quilting brings calm

I don’t think he would ‘enjoy life’ during the treatments. He would be ill and miserable and would’ not understand or remember why. Sometimes the treatment is worse than the disease. Why put him through it when the even the most optimistic outcome is continuing down the dementia progression complicated by hospital delirium… and the worst is going through the treatments without remission and still going down the dementia path with hospital delirium? And being scared, confused, ill and miserable during the six month treatment when that same six months time period is possibly the last months he will be cognitively with it enough to ‘enjoy life?

LaneyG

I understand your dilemma. My DH has many other med issues that may eventually become quite serious and terminal. I sometimes think about the “what ifs”. With that being said, I agree with all the previous posts.

charley0419

My wife going through 6 weeks 5x a week radiation treatment and must stay still , I'm so lucky that she's still very cooperative can't imagine if she was in advanced stage.

Denise1847

I would not treat my DH. It would be merciful for him and you. At this point, it is not about extending the ravages of an Alzheimer's life but the quality of life.

Belle

Does your DH have an advanced medical directive? We have both done advanced medical directives that indicate that if we have dementia we do not want treatments that would prolong our lives for any reason just comfort care. It sounds like the doctors advice was that it wouldn't be ethical to give chemo to someone who cannot consent. If you are comfortable with the doctor maybe consider that reasoning in making a decision.

mrahope

It is a very difficult path you are walking. My DH is a 3 time cancer survivor, but even when he understood completely, he refused screenings for recurrence. It's the only saving grace knowing that this seems to be his preference.

MN Chickadee

In stage 6 I don't think I would do any invasive treatments given the untreatable and terminal condition that is Alz. Anything as small as a fever from a cold can send a stage 6 PWD into a tailspin, so cancer treatments could potentially really strip any quality of life from the extra months that the treatment may preserve, and even if that wasn't the case the dementia will march on and he would reach the end soon anyway. I'd focus on comfort and quality of his remaining time.

dayn2nite2

Two words. What for? Remission only to be returned to the unrelenting march of dementia.

upstateAnn

My husband has heart disease. My daughters and I made the decision not to treat with any surgical interventions.

midge333

I agree with everyone else. I would not treat the cancer.

CindyBum

My goodness. This damn disease. I am so sorry that this difficult decision has been added to an already devastating path.

Brokenhearted in Illinois

thank you to everyone! If DH did not have Alzheimer’s. One would not hesitate to treat the leukemia ( he has early onset- only 73). Yes his life and abilities are so diminished. But are we imposing our standard for defining quality of life for our loved ones? That is my ethical dilemma.

midge333

Yes, on some level we are imposing are own standards for quality of life. That said, as his spouse, you likely know what he would want better than anyone else and because you love him, you will act in his best interest.

trottingalong

https://alzconnected.org/discussion/comment/198382#Comment_198382

Very well said.

M1

Perhaps we are, but I don't know any way around that. I firmly believe that there are things worse than death, and unreasonable suffering in an irrational being is one of them. Does it help to think about what choice you might make for yourself? Or what the outcome is likely to be? The treatment will be difficult, regardless. If it works, he still faces a death from dementia with prolonged and progressive suffering. If it doesn't work, he has suffered more than he might have in the time he has left, for reasons he can't understand and consent to. The only reason i can see to treat him is if there were some outcome that led to improved health and quality of life overall, and I don't see that as a possible outcome here.

This comparison may sound harsh jb, but I also wouldn't put an animal through treatment in a similar circumstance. The vets sometimes have it easier than the human docs. And for the record, i am not an advocate of human euthanasia. But "can" and "should" are two very different things.

Caro_Lynne

https://alzconnected.org/discussion/comment/198385#Comment_198385

Such an interesting topic. It will be two years in March since my LO suffered the vascular stroke that exacerbated his dementia and changed our lives forever. Prior to stroke he was just forgetful but otherwise fully functional.

The neurosurgeon at the hospital informed me that if he does not have surgery, he will die. As you can imagine, my mind and heart were racing and without hesitating I authorized the surgery. Post surgery he was in ICU, induced coma and intubated for three days.

Years prior to the stroke, we executed our advanced directives along with other legal docs. Among the directives were no intubation, life support, etc. There was no way to predict what happened to him and even if I had known the consequences of the surgery, I could not say no to life saving surgery. I had to give him a chance, and pray I did the right thing.

trottingalong

https://alzconnected.org/discussion/comment/198396#Comment_198396

I know I would have done the same, because I know me. That had to be very difficult.

midge333

I am sorry for being blunt and please understand that I am trying to be helpful. There are three ways this can play out:

1. Undergo treatment and it is successful. Die from dementia.
2. Undergo treatment and it is unsuccessful. Die from leukemia and/or dementia.
3. Forgo treatment and die from leukemia. Avoid the suffering and indignity of stage 6 & 7 dementia.

All of these options suck. Personally, I would choose option 3 because it is the most kind. Treatment for leukemia is no walk in the park even in someone who understands what is happening to them and can consent to treatment. Add to that the torment of dementia...

Joydean

My dh is in early stage 7, so my opinion is I would not put him through anything like the treatment for leukemia or any thing else. Just knowing he is dying a little every day is bad enough. But this is my opinion.

Best of luck to you and I know you will make what ever decision you feel is right for both of you.

Joe C.

I will not offer my opinion rather point you to something that might help you make your decision. Perhaps watch “Have You Heard About Greg?”, the documentary on Greg O’Brien a journalist and author who has documented his journey with Alzheimer’s. Greg is dual diagnosised with Alz & cancer and discusses his decision not to treat the cancer. This may give you a different perspective. You can find the documentary on PBS and probably online.

housefinch

As a physician who also watched my father endure treatment for chronic leukemia (probably a different kind from the one your husband has), I would choose no treatment. I would not want to endure treatment and live through late stage dementia. To me, a terminal cancer diagnosis would actually be a gift in that situation. I’m sorry if this sounds cruel to say. I have also cared for children with cancer during my training, who didn’t understand they had cancer and had to suffer. Obviously that’s a different situation, but I cannot imagine subjecting someone who has another terminal illness (dementia) to very difficult treatment to maybe prolong their life so they can reach severe dementia. My opinion only.

jsps139_

My DH has an aggressive but non-invasive bladder cancer. He has had 7 surgeries and does well with them (coming home with a catheter is a nightmare, and I always take it out earlier than they tell me to with no problems resulting). Without the surgeries the tumors could grow and block the urethra and he could not urinate. So, there’s really no choice. However, his urologist was pretty persistent about treatments to prevent the cancer from returning. I looked up the side effects and investigated to find comments from people who had the treatments. I continually refuse these treatments. Gross side effects are awful for someone that knows why they are experiencing them, but how can we agree to something that practically guarantees awful side effects for our LO when they will have no idea why they are suffering. I know my DH would say “no” treatments if he understood the entire situation. But he doesn’t understand, so I just have to be his voice and do what I know he would want.