Documenting decline

Katielu

my DH was formally diagnosed Jan 2023 with MCI, “with a toe into dementia”. I guess they just weren’t able to call it what it was/is.

I document as days go by as I feel I am sometimes to close to see the changes. I know they have happened. He now searches for words, sometimes he finds them, sometimes not. I handle his meds and still have to help, even with the pill box. He can’t work the coffee pot, the keruig, he never cooked so safe there. I don’t think he can use his debit card but doesn’t go anywhere without me anyway.

My question is, what am I doing with this documentation, other than validating what I see each day. Will anyone ever ask?

We go back to PCP in two weeks to discuss meds to slow progression.

CindyBum

At some point, you will be the only person the doctors can ask. At least that's what I'm thinking as I watch my SO show signs of this being more than MCI complicated by anxiety and stress from long-term caregiving. She has started to notice more and become worried that she does, in fact, have dementia. I can see she's clearly in Stage 3. I'll find out on Sept 14 myself if they're prepared to call it more than MCI. I'm not really sure what getting a clear diagnosis will bring me other than more tears.

So I say document if that's what you need to do to help yourself through this, whether anyone ever asks you for it or not. My guess is the doctors will ask.

PookieBlue

Katie Lu,

I write everything down, the good, the bad and the ugly. I’ve been doing it for months now. Writing is not only therapeutic for me, but I will sometimes read or show my documentation to our daughters. It gives them an idea of what caring for my DH is like on any given day. That way I know they have to think about what it would be like if they need to spend time with him to help me out. My DH is quite humorous and I always write about those moments. I also can go back and determine how long he has been obsessing about something and if it is becoming a more frequent behavior. I currently to have to guide almost every movement. He does still make the bed and cleans off dishes before I put them in the dishwasher and I am grateful for that. When that stops, it will signify a great loss.

SDianeL

Katielu, I wish I had written his behaviors down 3 years ago. It helps the doctors know what stage your DH is in and what care he may need including medication to help with future behavior changes. If your DH has not seen a Neurologist I would ask for a referral. Did they do an MRI? Did they do the 3 hour test? My DH was diagnosed 2 years ago with Dementia. They think Vascular FTD but not sure as he can't have an MRI. After the 3 hour test by the Neuro Psychologist, they told me not to let him drive anymore. She said he had visuospatial difficulties. I asked the Neurologist what difference would a definitive diagnosis make and they said none. There is no cure. They can only manage behavior with medications. Each person progresses differently so there is no way they can tell how it will go. I take the list with me and give it to the doctor. They put it in his file. It did help me get Caregiver Support through the VA and it may help if you need to file for SSDI or get Medicaid help. My DH is now Stage 5 going into Late Stage 5. If you haven't done so, get a DPOA with an Elder Care Attorney immediately. I'm so glad I did. Also get the book "The 36 Hour Day" recommended by a nurse and helped me so much as his behavior changes. Here's a link to a document someone posted on this forum that helped me understand more about Dementia and stages. Please keep us posted. This disease is terrifying & heartbreaking. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

JeriLynn66

Your writing is therapeutic for you both;

For you to validate your observations and eventually for the Medical Team to best assist your DH.

I am a Registered Nurse and so for me, it helps keep my thoughts in order and the journey in perspective.

I’m sorry we’re all in this situation together but so thankful for this forum…

Katielu

Thank you all. Yes, he did have the Neuropsych eval, and all the DPOA/trust papers are done.

at some point I will need the diagnosis for the insurance policy we have for inhome care. Dementia is a covered diagnosis for me to get help with ADL’s, respite and such.

i do know it helps me, I just didn’t know if it was needed for anything else.

SDianeL, thanks for the link. I wasn’t sure where everyone got the stages from.

Iris L.

Vascular dementias may possibly be amenable to slowing by ameliorating cardiovascular risk factors, such as hypertension or elevated cholesterol or atrial fibrillation.

Iris

M1

Katie, when you go back to your PCP or whoever diagnosed him, I would ask them specifically what criteria they are using to distinguish between MCI and dementia, and tell them it's important for insurance purposes.

I can't prove this, but it seems to me that many times people are initially told MCI--as if to "ease" the person and the family into thinking about the diagnosis, because it's a process, as we all know. I have a suspicion that it's a subjective distinction as often as it's an objective one. There are times when it matters, as in your case, and times when it doesn't.

toolbeltexpert

So it may not matter if you never place your dh. It is is a reminder of why I placed my dw. Everytime I think of bringing her home I remember her hurting herself. All the behaviors I couldn't manage. I have said it before and I'll say it now. I have videos of my wife which I will never watch again but they are there as a reminder of why I placed my dw. I will delete them when she passes. She is somewhere in the sixes now with some 7s mixed in at times.

And yes writing it down is a validation for the caregiver.

GothicGremlin

I started writing things down in a book a few years ago so that I could keep track of the changes in my sister. I use it to track symptoms, behaviors, medications, change in doctors, and most importantly, dates. It's been useful for me. Now that Peggy is at the beginning of stage 7 and can't communicate well with doctors, as @CindyBum says, I'm the only one that can answer the doctor's questions. I often refer to my notes and can give doctors specific dates on when I first noticed one thing or another.

I also document every conversation I have with my therapist (who used to be a social worker helping Alzheimer's patients & their caregivers), and all doctor conversations.

A side benefit of doing this, is even you never need it for a doctor, you can glean insights about your loved one and the progression of the disease over time.

tucson anne

I agree with the comment by 1 about a diagnosis of MCI. First, the tests are normed to average people. If your partner is highly educated he may do well enough so he is not classified as having anything other than MCI. My husband was the head of a department at a large university and his neurologist, who knew him professionally, kept minimizing his issues. Despite the MCI diagnosis, we, my husband and I, knew it was actually more than that. Now 5 years after the initial MCI diagnosis he is clearly in stage 5 and his test scores dropped significantly each year. Alzheimer's was confirmed by a PET scan (part of a research project since Medicare won't pay for this). The literature suggests that people with "high cognitive reserve" don't look like they have Alzheimers or other dementias when they actually do, despite test scores. And once they start the decline, it's typically a bit faster (because they've actually had dementia for a number of years but it was masked by that "cognitive reserve." Your own documentation will help you when you are thinking about progression...you can see the changes and the time span. And as for diagnosis, if his behavior is typical of Alzheimer's I believe a spinal tap is now a pretty definitive diagnosis and perhaps insurance will pay.

Iris L.

Ask about Aricept or Exelon patch to help with his speech. Exelon patch is helping me.

Iris

Chloe mom

I keep a daily journal of everything concerning my husband’s activities for the last 3 years. It has helped me “remember”. I also have a sheet with all the changes we have seen since Aug of 2022. I give it to anyone who has a professional relationship with my husband. I update it per month when we have noticed significant changes. We are still working within the last 6 months for a diagnosis, but we tell people we know are close with about him having dementia; so they don’t expect him to be perfect and understand why I am never far away.

Howaboutnow

I have a running note in my tablet that i write/type anything significant. I type the date…and then write whatever i deem necessary. The next time i want to type i go to the end of the Note andi first enter the date again, and type my thoughts. I’ve been doing that for about a year.

It won’t be shown to anyone, not a Dr, not family. It first was for me to write new behavior, then i started adding my feelings. And OMG, it can be a healthy way to release negative/sad/frustrated energy that needs to come out.

When we are in the midst of an ongoing crisis we lose perspective. Being able to read the past gives a vivid restrospect. Whereas if we rely on our memory to recall the past, significant details are missing. Why does that even matter? For me, journaling has helped map out where he is, timeline when a “sometimes” thing became the new norm. It also maps my emotional state (aka a mess). My goal is always to manage myself better, to grow, and rereading my thoughts from a moment I’m no longer in helps me to get a sense if i’m emotionally stuck, or doing “just ok”, or maybe entered a new acceptance point. So far, I’m stuck or just hanging on. 😊

PS no one but us knows what the toll of this disease feels like. My notes are my scars. LOL