Is a diagnosis of any benefit?

northernlady

Just left the third neurologist we've seen in the past year.

Background:

Last year Oct 2023 my husband was having problem with executive functions. He walked our neighborhood several times a day, went shopping with me, but easily surrendered his drivers license, and all control of our finances to me.

This Oct 2024, he needs help with all ADLs, needs assistance walking, can't sit up in a chair, has had several falls, doesn't realize when he's sick (UTIs, constipation, dangerously low blood pressure.)

We've had MRI, CAT scan, DAK scan, lumbar puncture, genetic testing at MAYO clinic, and three neurologists. We've been told AlZ, Ataxia, encephalitis, LewyBody, Parkinsonisms, dementia, but none of these tests proved any of those preliminary diagnoses. The only thing we know for sure is he's lost brain mass.

Today I rushed us out of the doctors office because these highly qualified people were more interested in letting medical students poke and prod my love for their benefit, not his.

And I'm wondering if there is any benefit in continuing to get a diagnosis. I am worried about losing the care and respite companion currently provided through the VA.

I'm frustrated, angry and very sad.

M1

I don’t think it matters what the specific diagnosis is; none are treatable, so I wouldn’t waste your time and energy. If there are behavioral issues, you may need a geriatric psychiatrist- but a good primary care doctor can also prescribe. I’d focus on the practical issues of taking care of both of you.

LJCHR

I agree with M1. It really doesn’t matter what it’s called, the outcome is the same. I’m just trying to make my DH have as good of quality of life that he can have today. I don’t even want to predict what tomorrow will be. Prayers for your strength - and all of ours.

Rick4407

Having had some experience with the VA, they are not profit oriented like commercial insurance. As long as his conditions persist they will provided needed services. In many states they also have residential memory care centers that are also provided if needed.

jfkoc

Once treatable causes are ruled out I agree that concentration of practical matter is the most important.

That said, you must bare in mind that drugs given are not the same for all the dementias so as you progress it is important to monitor behavior closely.

trottingalong

i agree with M1. My personal opinion is why continue to put your DH through more tests?

Biggles

I agree after initial diagnosis I think it’s more important to be gentle and kind to your DH and yourself and keep the researchers at bay. I now only allow those who are really necessary to be involved with us. I have asked people to stop and leave our house in the middle of visits, I have walked out of doctors visits. They cannot fix my wonderful DH and I want to keep my thoughts, feelings and memories of him in tact. I think this is when your DH needs protecting most.

northernlady

https://alzconnected.org/discussion/comment/225240#Comment_225240

Thank you so much. Your comment really resonates with me today.

northernlady

I was relying on getting appropriate home services for him. Everyone always asks first "what's his diagnosis".

northernlady

https://alzconnected.org/discussion/comment/225203#Comment_225203

I hope you are right. I can keep him home with the help I am now getting. I am worried though:

I was relying on getting appropriate home services for him. Everyone always asks first "what's his diagnosis".

M1

I bet you could say Alzheimer's or unspecified dementia and that would suffice. The bad news is that he won't qualify for much, perhaps some under Medicaid or the VA, otherwise not much coverage to be had. You might check with your local council on aging though, sometimes there are local grants that can help.

sandwichone123

Because my dh was young and still working I needed a diagnosis so i could file for disability. Got a diagnosis, filed the next day (I'd been working on it for a while).

SDianeL

My husband was in the VA system and we qualified for caregiver support respite care fo me The nurse evaluates him depending on his ADLs. The VA doesn’t care about a definitive diagnosis. My husband’s was Dementia- probably vascular but later added Alzheimer’s Posterior Cortical Atrophy after I sent all his VA doctors his behaviors each month and she looked at his latest CT Scan. He had a bad reaction to Mertazapine for agitation and the doctor immediately stopped it. Ask for a referral to a Geri Psychiatrist. She really helped with his meds. If your DH is 100% disabled he qualifies for VA memory care facility at no charge. They give preference for Purple Heart, etc. If he has less than 100% he may still qualify but will pay a copay which is still much cheaper than facilities outside the VA. I would start doing paperwork now for a VA facility as the application process is challenging and they have limited beds. You can get on a waiting list. The application process and forms are online. My husband received great care at the VA facility. They have a physician and pharmacy and Social Workers on site.

ImMaggieMae

My husband went through numerous CT scans, MRI’s, Pet scans and like your husband, the only thing they could say for sure was that he was losing brain mass. Hey thought FTD, or Alz although he is cooperative and never aggressive. The only thing that was helpful was medications which help to keep help to keep him calm. Unless his treatment stands a chance of being changed in a helpful way as the result of a test, then we decline.

The only home services we can get that are covered by Medicare are very occasional and usually the result or an ER visit. And they are only a visit by a home nurse once a week to check vital signs and a physical therapist a couple times a week. These services only last for a few weeks. Any other respite care we I have to pay for myself, a caregiver 3 afternoons per week so I can get to my own medical appointments and grocery shopping. Sometimes I use it to catch up on a couple hours sleep.

northernlady

https://alzconnected.org/discussion/comment/225355#Comment_225355

Thanks Diane for your insight.

He qualified under the catastrophic category and went from priority 8 to priority 4, due to complete inability to do any ADLs independently. There is growing concern that categories 8-5 may be eliminated (thus requiring the VA to drop a bunch of vets).

I have started the paperwork for VA homes and will try to get on waiting list. This is my plan for his care if something happens to me before him. I remember your experience when you needed treatment and had to place your DH. That's what got me started as I realized I was his only help.

bobcmcc

One value of a doctor's diagnosis is it provides evidence that a successor caregiver can use to assert power of attorney and assume decision making authority over care and financial matters. My DW and I are in our late 70s and I gave our son a copy of the diagnosis in the event my wife survives me.

Also, it was pointed out to me that there is value in continuing to see doctors so that they have additional and current data to include in their research.

Biggles

A diagnosis is important, the steps are long and hard but unfortunately essential for getting help, but once you have that official diagnosis then you can monitor who comes into your life. In Australia the best thing seems to be to qualify for A Package we are going through that process at the moment but, be blowed on this journey, will I have any one treat my DH or myself with dis-respect.