Treating New Medical Condition

ThisLife

My H diagnosed with Alzheimer's in 2014, well into Stage 6, anosognosia, irritable, etc. Able to dress, bath, eat food prepared-when the mood strikes and remembers anything he is told for less than a minute. I make decisions based on "Is this a hill I want to die on today?"

At 71yrs he suddenly has very high ferritin levels (800+) with no symptoms. Treatment recommended is phlebotomy, similar to donating blood - weekly, then monthly, then, hopefully, every 2-3 months until ferritin levels remain under 100. So length of treatment is open ended.

What H understood from today's initial visit, after several attempts to break it down, is:

- he doesn't understand why he was at the doctors

- he is going to have shots of medicine

- doesn't know for how long

- mostly that this is being done to him by the "Pain", me. (When he was asked if he had any pain, he pointed to me; it wasn't a joke. He was glaring at me.)

He is angry, upset, down and who knows what else because he can no longer find words.

My initial reaction to the recommendation he see a hematologist was "why?" I brought it up for discussion with an online group I attend that focuses on "living well with dementia" (Caregivers and people with various dementias.) You can quickly guess which direction that went including the horrors of liver failure. (I saw my 40 yrs. old brother die of liver failure from alcohol abuse. They were able to make him comfortable until the end.) Talked with my son who was good with not following up.  But I did it anyway.   : (

When I have appts with my H's doctors no one wants to talk about the elephant in the room. Which to me is what is the best course in view of Alzheimer's?

My H is having a bad evening/ He will probably be up late into the night talking to himself and rummaging.  By next week's appt, he will be angry because no one told him about this and why am I doing it. 

What am I supposed to do with this s#%@?

Fairyland

I don’t think, personally, that medicine (as in the profession), is geared up correctly to deal with these questions. It is too silo’d by organ system, and above all focused on extending quantity of life. I work in clinical science and most patients don’t have this much complexity, they want a diagnosis of one issue and then, if possible, a cure, then job done! Bye.

To me it is a balance between quality of life, which can drop, to the point that quantity of life is a detriment rather than a good. Dementia is a massive and growing millstone around the neck and need to be considered near the top of the priorities for weighing up that balance.

Given the choice of dying from dementia and most other things, I would choose “other”.

Iris L.

Were you given dietary advice to decrease iron absorption?

Iris L.

M1

ThisLife, I'd forget about it.  So they are saying he probably has hemochromatosis, a genetically inherited condition of iron overload?  At stage 6 I absolutely would not put him through phlebotomy.

All recommendations have to be tempered by some common sense.  If you/he have children, they should probably be screened.  Beyond that, I'd just let it go.

Pat6177

ThisLife, I have no words of wisdom though I would lean toward not treating. I am entering the phase of what will improve quality of life vs extending life. But I’m still trying to figure that out. DH is early Stage 5. Right now DH is refusing everything. He is saying he’s ready to go, he doesn’t what to live much longer, especially with these recent medical issues (he wouldn’t say but I’m sure he means the dementia). So he refused to get his hearing checked, he refused to go to PT for his balance, refuses to get a colonoscopy (he is due for a repeat this year and is having episodes of abdominal pain that could be diverticulitis) and is now refusing cataract surgery. I’m going along with all of this except for the cataract surgery. Now we’re talking about my quality of life if he can’t see well enough to walk to the bathroom. 

You’re right about the docs not wanting to deal with the elephant in the room. I haven’t figured out if they don’t want me to think they’ve given up on him, they don’t want to talk about it in front of him or what. I’m wondering if the docs are waiting for me to say something about palliative care.  Another poster on this site brings her DH to a palliative care team and I’m thinking of looking to see if there’s such a group where I live.

Quilting brings calm

I suggest calling the doctor’s nurse this week  and discussing your concerns with her/him or discuss it via the patient portal if you have one set up.  You can raise all the points about his dementia stage and whether or not the treatments will reduce or add to his discomfort. 

dayn2nite2

No.  Nope.  No way.  There is no way I'd do anything to treat this in a person who does not and cannot understand and who blames me for the treatment.

ThisLife

Thank you to everyone for the thoughtful replies.

Iris, the doctor discussed diet, and I read up online. We eat beef maybe twice a month; doctor said once a week was okay. No fortified cereal. He doesn't drink. He's not a fan of legumes, but I slip them into salads or soups. His vitamin doesn't have added iron. He eats two slices of whole grain bread not enriched. I go for high protein/fiber, low sugar. He eats eggs for breakfast. Other meals are lean protein, salad, veggie, fruits, potatoes in various combinations. He does love his ice cream/cookies/sweets. He usually achieves 10,000 steps per day because he thinks he's the one who needs to walk the two goldens. If there are things I am missing, please let me know.

M1, he inherited one gene for hemochromatosis determined in March. The doctor told me to share this information with our son and Hs siblings which I will do. I'm not aware of anyone in his family with this issue. They are of Northern European descent.  

I wish I had gone with my first thought of quality over longevity, and why put him through this. Thank you for sharing these thoughts, too. He did radiation for prostate cancer in 2019. Difficult to get him to drink water at the exact right time. At least he understood what the disease was and why he was getting the treatment. Day2nite2, today I pondered what does "informed consent" really mean in this type of situation.

Fairyland and Pat6177 my thoughts exactly. Mostly he just doesn't want to be bothered with anything. I had thought about palliative care over a year ago. The doctor did mention they could make a referral to their social worker and want to call once a month to check in with us. (I know Medicare pays them extra for this.) 

Quilting, I never thought about calling the office to share his reaction and my concerns.

And as an update, H doesn't remember any of this today.  The same position everyone else is/was in. He won't remember any of this until/if I take him for blood next week.