Possible diagnosis

Dungie

Waiting for the diagnosis to come in but considering what it’ll take to just admit it’s Alzheimer’s. The Amyloid score was 44.3 and he is clearly symptomatic. (Been about 2years)
This waiting phase is hard - I want to start reaching out for help and notifying family. But the neurologist follow up isn’t for another month.

jgreen

Hi, Dungie.

Welcome. So sorry you have to be in this place; but it is a good place to start.

It looks like you’ve had this ‘feeling’ for a while and have done your research. I am still rather new here, myself. I just got a copy of the book “The 36 Hour Day” that was often recommended by others in this group. If you decide to get a copy, the newest edition just came out - 8th edition. I know I will find lots of help with this resource, and hope you do too.

If you haven’t already, find an Elder Care attorney and get legal paperwork in order. A good attorney can help get you started with that ‘maze’, and point out other resources in your community.

Reaching out to friends and family is a wise move. If you get the book, it is a good resource for them too.

Come back often and let us know how you are doing. This is going to be a long difficult journey for you, and we can all support each other along the way.

Prayers and hugs to you both.

Dungie

Thank you for the empathy. I need it.

I’m wondering if it would be irresponsible to go ahead and let people know? It’s clear it’s Alzheimer’s with an Amyloid score like that. I may just get his PCP to okay letting people know. The neurologist is still a month out and this is hard without more widespread support right now.

jgreen

Hi, Dungie,

First - our PCP is a terrific Internist and we both love him dearly. Dementia is NOT his forte, so any discussion about DH’s dementia is quick and not detailed. I had to read and look up terminology that was on DH’s first MRI to figure things out on my own. Waiting on referral to a ‘Memory Disorder Program’ to get a more thorough evaluation and plan. Fingers crossed.

With that said, I found that when I started letting close friends and family know, they already knew something was off with DH. They appreciated the candor and have been very supportive and helpful since.

If you want, you can reveal your LO has dementia, and the specific type is yet to be determined. Most lay persons understand the term dementia and will go with that. When you get more specific it may get a little ‘clinical’ and they could get lost in the details. They just want to know what they can do to help you. I find adults will ask when they want more information.

Just my opinion. You go with what you are comfortable with.

💓

Sandi Roe

it was very important to me to get a firm diagnosis. There is a lot of Alzheimer’s in my LO family so even though most of them could see the changes others want to put it up to old age, he is 86. I trudged forward and after blood test and PET scan got the firm Alzheimer’s diagnosis. He is now stage 4-5, considering Palliative care. What I hate most is the communication with LO just goes away. We watch TV and I try to explain the whole show but 5 minutes later he doesn’t even remember watching it. I boss him around like an old nag but saying direct commands seems to help him remember. Today is another day, blessings to all🤗

trottingalong

https://alzconnected.org/discussion/74523/possible-diagnosis

Do what’s comfortable for you. My husbands initial diagnosis years ago was MCI with depression. He has never gone back for further testing, but it’s clear what he has. Once it was impacting our lives, I started telling friends and family. Such a relief. We all see signs much earlier than those not with the person daily. Reaching out for help now will help you greatly.

SDianeL

I wouldn’t wait for a firm diagnosis. Dementia is the disease. Alzheimer’s is a type of dementia. Doctors are no help unless it’s EO and the person qualifies for infusions. Those come with major side effects. I would explain to family and friends that he is being referred to a Neurologist based on test results, and he’s had symptoms of memory loss for at least 2 years. In my opinion, the best help you can get is right here. I don’t know what I would have done without this group. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings and Teepa Snow. Come here often for info and support.

Dungie

thank you!! My instinct was not to wait any longer so we told the kids today. I actually used AI to help with the language and it was perfect. I feel like I’m not isolated from the family now and can begin discovering what we need. He was resistant to start telling but he’s, frankly, not experiencing it as much as I am. (There is some denial and lack of recognition ). I believe we can accurately guess the diagnosis. I just don’t know the specific prognosis.
I also need to cry a little and I’ll need some friends at my side for the hug to get that going.
xxoo

Iris L.

What you perceive as "denial and lack of recognition" is actually characteristic of dementia, and is called anosognosia. Most PWDs (persons with dementia) but not all truly are unaware of their own changes. If you confront them with reality, they will get upset. So you will have to learn workarounds and learn new ways of communicating.

Iris

howhale

So sorry you will be walking this path with us but, like others have said, close family knew something was wrong well before any diagnosis. When we did go through the assessment, my dear wife's initial diagnosis was also MCI. That opened the door for the neurologist to try medications to slow the process (which did not do much at all). We never went for any further testing, it was AD, I knew what the path was to be, it just confirmed suspicions. My wife never accepted the diagnosis, a common reaction, which was difficult and I never brought it up as AD again. If you believe your loved one has dementia, start your learning process right away and here is a great resource. I wish I had found it much sooner. Good luck and participate here as much as you can. I tried to get any and all of our family and close friends to participate here to learn the reality of this disease and to ask questions. A few did.

Chance Rider

My husband was just “officially” diagnosed this past August. Friends and family knew he often struggled to find words to express his thoughts. My husband does have anosogosia and only acknowledges having difficulty remembering words. If dementia or especially Alzheimer’s is mentioned he gets very upset. As I’m sharing the diagnosis with people I ask them not to mention ALZ or dementia to him.

howhale

https://alzconnected.org/discussion/comment/257747#Comment_257747

My wife began to suspect that people knew about her diagnosis, regardless of my assurances they did not. This led to her believing that one after another they were talking about her and treating her as if she was "crazy", her word no one else's. Someone would make a comment, unrelated to her condition, and she would interpret it as that person talking about her. She saw others having a conversation and believed they left her out intentionally so they could talk about her. The result was a level of anger that was beyond anything she ever displayed in the past. This happened with our children and other relatives. For almost three years she went from one to another accusing them, refusing to see or talk to them, banning them from our home, threatening to leave me because I supported them. It was quite difficult. My point here is that, in my wife's case at least, once she knew her diagnosis, which was just MCI at that time, she believed everyone thought she was "crazy" and she hated them one by one until we all had fallen victim to her anger and bitterness. And, after about three years, her condition advanced and that behavior just went away with no recall on her part, thankfully. Their reactions can be very different as we all know but I share this in case your loved one drifts into this behavior.

DonnaPJ

We have been fortunate to have had an early diagnosis with a gerontologist. My DH initially diagnosed with MCI but after 2 years has progressed to AD. Educating myself has helped enormously! The 36 hour day is an incredible resource! We await PET scan confirmation but DH had the new blood test which is 95% accurate. We are hoping he will qualify for one of the new infusion medications. Thankful for ALZ.org and all the resources they provide. I am also going to try in person support group for Care Partners. I can't take care of him if I'm not in a good place myself.

Momx3

Like so many who have already commented I don't believe there is really any reason to wait on an official diagnosis. We started down this path 3 years ago. MRI showed front temporal lobe atrophy and his amyloid was at 17 which they said wasn't any big deal. After seeing 3 different neurologists he was diagnosed with MCI. My DH is 64 yrs. old. Fast forward to now and I believe he is in early to mid stage 5. He has been on Aricept for the last year and a half and is now taking Namenda. If it's working I can't tell it. There is part of me that wants a firm diagnosis but then the other part thinks why? It's not going to change his treatment plan. We had a neurologist at UT Southwest in Dallas tell us that there's no need to take medicine because none of it helps. Crappy…I know. I know none of this is very encouraging, but all I try to do is take one day at a time and adjust things when I think it is time. I work full time, and about a month ago installed cameras inside the home so I can make sure he is ok while I am at work and he is home alone. Hope this helps…God Bless all of us that are walking this path and especially our dear LO's.

frankay

Get all the legal stuff done while you're waiting while you still can. Use the excuse that it's just something that needs to be done because you're getting older. Not to be cynical but why do you need an official dignosis? What help are you going to reach out for? I dont have good news for you; there's not a whole lot out there. The neurologist or your PCP will prescribe the usual dementia medications which may or may not help. Unless your LO will be participating in drug trials, infusions, working, or the MC requires it, I don't know why an official diagnosis is needed. Depending on your LO, they may not want you to let people know. This is a tough road. Good luck. Stay with this forum. It's a wonderful source of information.

howhale

So agree with the advice to "don't wait" on an official diagnosis and put things in place ASAP to be prepared. This disease is not going to be kind to anyone and give fair warning of changes coming nor how major they may be. The only point at which having a piece of paper with the diagnosis of AD was useful was when exercising our POA to make changes. That simple one sentence opened the door with our attorney to using the POA language to make changes when my dear wife had advanced beyond a point where she was considered cognizant enough to make the decision. So many of the old cliche's and slogans sure seem to be on point in this disease, "Be Prepared", "Heart Broken", asking for some peace and quiet ("be careful what you ask for"), etc.

H1235

I agree with the other, tell your loved ones if it will help you cope. Do you have all the legal stuff taken care of? This is so important. A will, a living will, DPOA and medical poa are important. You should also keep in mind that your husband will not be able to make decisions for you if something bad were to happen to you, so you should probably do this legal paperwork for yourself as well. As awful as this journey is I find some comfort in knowing what might be coming next. Without information I would be sitting in the dark waiting and wondering what is next. This knowledge will also help you interact with your husband better and maybe understand a bit more about what he is going through. I have attached a few resources for you.

https://www.agingcare.com/topics/295/anosognosia

DBAT.pdf

understanding-the-dementia-experience.pdf