AD plus other medical issues

ThisLife

My H is 71 diagnosed with AD in 2014. He is in early stage 6.   I posted here a month or so ago regarding my H new diagnosis of hemochromatosis. Phlebotomy was the recommend course of treatment and is standard. He was very agitated over the treatment as he was going to have more "shots."  We had a wonderful evening! (sarcasm) I received great advice and support here. 

I elected to try phlebotomy once.  He didn't understand why but went along with it. No continuing behavioral issues regarding treatment so I continued it. However, it is new information every week. He retains nothing. I was telling him Sunday about his appointment on Monday. DS was here. H asked why he had to do this. (He remembers that he doesn't like it.) I tried to explain, DS tried to explain. H said he did not understand, and we dropped the subject. These treatments are being continued weekly for another month as there has not been enough reduction in the ferritin level.

Now add a trip to PCP because of difficulty with urination. (2019 prostate cancer treated with radiation.) He had blood in his urine, so we are in the middle of appointments with the urologist. I was able to express to PCP that we are going for quality of life not quantity of life. That I wanted to treat conditions that are reducing his quality of life (urination), but hemochromatosis is not bothering H. (I do know the dire consequences of not treating it.)

Today a call from the PCP office asking if I've made an appointment for him to see the gastroenterologist for his Nonalcoholic Fatty Liver disease.  So off we go to another specialist. 

He isn't experiencing any symptoms except now he is more tired in the evening.  His days consists of watching TV and walking the dogs in our small, gated community.

He can still perform ADLs with prompting and has bowel/bladder control except for the rare bowel accident. I have managed medication for years. 

I'm in the process of looking for adult day care two days per week and respite care so I can take a vacation. I would do long term placement now, but DS is afraid I won't have enough income when the 3 yr. LTC policy is depleted.

Am I wrong in thinking that treatment should only be for conditions that impact H quality of life? Should I be seeking treatment for anything medical until he reaches stage 7? 

Quilting brings calm

I’m on your team.    Has the doctors said what the treatments will do to add to the quality of life?  Many of the doctors you mention are not all that knowledgeable about dementia.  Especially by the time a person gets to stage 6 as that is when the person often ceases to be seen at a doctors office due to mobility etc.  MCs and nursing homes often have in house doctors that see the  person rather than outside  doctors.   Maybe you need to provide them with a write -up ( from an official source like alz.org) of what stage 6 and 7 consist of  and the average duration of each.   The doctors may not realize the life expectancy he currently has due to dementia and what his quality of life will be the remainder of his life.  If you show them, then maybe you can have an honest conversation about treatment for the other conditions.

Stuck in the middle

I agree that painful conditions like inability to urinate should be treated, and the others can be let go.  That's the approach I'm taking with my LO.

You might want to check into a MC facility that will accept Medicaid after three years of LTC.  My CELA showed me how it can be done in our State.

M1

TL, neither hemochromatosis OR "fatty liver/nonalcoholic liver disease" (by the way, I don't know how they could distinguish between the two without a liver biopsy) are going to have any impact on his quality or quantity of life, I would absolutely forget about them.  If his urination is painful or difficult, that is worth pursuing (and might respond to simple medications).  I would NOT put him through anything invasive with the urologist.

I swear some practitioners just can't see the forest for the trees.  The key question:  is he comfortable?  Not much else makes any difference.

From what you are describing I bet he won't last another three years.  But I know you worry about being wrong.

M1

ps your dog looks like my Riley's twin.  White, kind of a cross between Yoda and Dobby (if you are a Harry Potter aficianado)

dayn2nite2

Every time one of these geniuses come up with a new thing for you to arrange, tell them your goal is comfort care and ask them if this thing they’re asking for fits that goal.

ThisLife

I want to thank everyone for sharing hard won knowledge. I can see my new approach needs to be: "Why? What will test show, especially in view of nontreatment."  Urologist did an ultrasound and ordered a CT scan, and we'll see what that shows. (There will be no surgery or radiation.) I'll take him to the gastro, but there will be no biopsy. I will have detailed info for the hematologist on AD.

Quilting and Day- I'm beginning to see the problem with medical practitioners that do not understand about dementia and what care givers go through. The PCP is board certified in geriatrics. I like the idea of giving them something that explains where he is in the AD and the future progression. My H walks, talks, answers questions (incorrect info unless it is deeply ingrained due to military service.) I think he will be able to give his DOB and SS# until he dies.) I give H space to answer doctors questions. (Cue the crickets.) I wait until they look at or ask me. I guess that doesn't tell them anything???

Stuck - I'm going to take a much firmer stance with the doctors. I'm visiting facilities this week for respite and future LTC and am asking about Medicaid. Two have advised me to get ducks in a row with our CELA re Medicaid. 

M1- Thank you about my baby. We have two cream goldens out of the same litter. Fortunately, they are nearly eight and in good health; the first three years!! Give Riley a scratch for me. I too feel he probably has approximately three years. My son has commented he is one illness away from being nonfunctional. But??

My son needs information from a reputable source regarding prognosis for caregivers. I was also given information on a group that helps navigate the VA and programs for him at this stage.

I really appreciate the support and validation you all have provided. I don't feel like I'm completely out in left field. 

Pat6177

I’m going thru a similar shift with my DH but it is mainly coming from him. He has decided to say no to almost everything. We’ve shifted from annual appts with cardiologist, pulmonologist and urologist to telling them we’ll call if there’s a problem. In the past year or so, DH has refused CPAP machine, hearing test, colonoscopy to evaluate for diverticulitis, PT for balance exercises and cataract surgery. These are not things I can force him to do. So I have decided to go along with his wishes. I brought this up at DH’s last appt with his Dementia Specialist who was very accepting of the info. I need to do some research on exactly what palliative care is but from my limited understanding, that’s where we’re headed. It will be interesting to see how this plays out with his PCP.

ThisLife

Pat - Thank you for sharing. If I told my husband, he did not have to go to the appointments he would refuse. (DS is not on board, yet.) 

I'm a semiretired special education teacher specializing in sever behavioral issues.  Many skills are useful for persons with dementia. I took driving and his beloved Jeep in 2018. He blew his cork.  Lots of verbal ugliness. I stood firm. In 2019 he had a four-day hospital stay due to fainting before a PET scan. He needed a PET scan and had to stay until it could be done. He was leaving every day. Nurses almost started checkout procedures because he said he wanted to leave. I just told him he wasn't leaving until the test was done. Good times. I think it sticks with him that arguing with me doesn't work.  Who knows?

VA social worker at a Demetia fair said I could get palliative services in 2020. I didn't follow up since we were moving out-of-state. I will now.

JoseyWales

ThisLife - I'm another special education teacher who works with students with emotional disabilities and severe behaviors, and I've found my experiences dealing with my students really paid off when dealing with my husband, too! I have an amazing ability to look calm when things go flying around the room. And I know how to redirect like no one else.

ThisLife

JoseyWales- I hear you. I know two other women who dealt with severe behavior disorders whose H also have/had AD. We all see the commonality. (hugs)