Progression confirmed and my heart breaks a little more

Jeanne C.

I've been seeing changes in my husband's understanding, abilities, and behavior over the past few months. I knew things were worse. We had a follow-up with his memory care doctor yesterday. Taking the advice of everyone here, I sent her an email in advance detailing what's been happening. We've been in contact quite a bit as she's been working with us to adjust meds and she saw him a month ago. She spent a good amount of time with him and administered the MMSE. Since June, he's dropped 10 points to a 5! And she confirmed what I suspected: he's moved firmly into stage 6 on the FAST scale.

I kept it together at the appointment, and when I took him out for ice cream, and while we watched the Phillies game. I kept it together but I was crying inside. This is so fast. He was only diagnosed in January. He's not even 65 yet.

ButterflyWings

@Jeanne C. I am so sorry that you and your DH are living this nightmare that so many of us are in. My heart goes out to you. I wish you could just wake up and things would be normal again. I wish I did not truly understand your shock and pain. But, unfortunately, I do. Sending you virtual hugs, strength and hoping you get all the help you need to navigate his disease progression as it takes so much from spouse caregivers, just to carry on for both. We know you and we can do it, though it is the hardest thing ever.

Mint

I am so very sorry

M1

JeanneC I'm sorry. That is very fast progression. Glad you can share your grief here. We will try to virtually lift you up......

JeriLynn66

I’m sorry…

Jeff86

Sad sad sad. Not much comfort in having your perceptions validated.

My DW spent several years in stage 6 before progressing to stage 7. Every AD patient progresses at his o her own pace.

Our hearts are with you as you walk this road.

toolbeltexpert

Jeanne sorry to hear about how fast things have progressed. Sending hugs

LJCHR

Jeanne - so sorry for your news. May you find the strength to carry you through this.

Ed1937

Jeanne, I am so so sorry. I know that was a gut punch, but please feel free to post about anything that is bothering you. We're here for you, and we'll help you get through this.

M1

Jeanne, I actually censored myself in my earlier post. Yes it's crushing---but there are plenty of times when I wish my partner's progression were faster so that this would be over for both of us. I know that doesn't seem like a silver lining now for you, but I thought it nonetheless. Your overall journey may be a relatively rapid one and there may ultimately be some mercy in his not lingering.

Howaboutnow

JeanneC-

Constantly having to stifle our emotions while with our LO is hard every day, but especially so when you have to process a new shock. Those are the most “alone” moments we have. I’m sorry you had to hold that pain in and couldn’t share it with your DH like you would have in “healthy days”.

Rocky2

JeanneC, I'm sorry for DH's rapid progression. So many aspects of this disease, and especially sudden changes, are unsettling and bring grief. I hope that you will find comfort and support from this forum community and your local support network.

Tom

Dio

We hear you, felt all that you're going through. Sadly, there's no magic wand to wave away the pain. Stay strong. As with everything in life, this, too, shall pass. Some wise person said that when acceptance occurs, it will become easier. Not devoid of pain. Just easier.

ImMaggieMae

JeanneC, I am so sorry. My husband is in stage 6 as well. I try (not always successfully) to concentrate on the things he can still do and do what I can to make things easier for him. We find ways to deal with the losses. this forum is a good place for answers and ideas to make things run as smoothly as possible. It sounds like you have a good doctor who will hopefully work with you to ease some of the symptoms.

Jgirl57

I am glad you have the validation of what you were suspecting and the medical professional worked with your concerns. Sending hugs for your stifled emotions.

Denise1847

Jeanne,

My heart goes out to you. I know your feeling as it is such a shock when you see the progression. Honestly, I pray every morning for calm, no anxiety, no fear and for peace for my husband. I also pray that God takes him before I would have to place him. As M1, said, the shorter the duration for our loved ones, the less suffering for them. I see the confusion and frustration in my DH's eyes and it is gut-wrenching. As far as breaking down, it is very difficult; however, I find if I focus on the things I need to do to keep us functioning it helps. I don't look back at what was. I take one day at a time and I have less sadness. I pray every morning for the patients and their caregivers.

GothicGremlin

@Jeanne C. I am so sorry to hear this.

My sister and your husband are the same age - I've found it very hard to accept given that young age, so I know how you feel. Virtual hugs to you.

Joydean

Jeanne I’m so sorry I know how much the progression hurts, like all the others here. I’m like M1 and I pray the Good Lord takes my dh before this disease keeps going. He is the end of 6 and being 7. I don’t think I have the heart to see him getting worse, but I will always do my best to keep him as safe and happy as I can. Prayers for you and your husband.

LindaLouise

I'm so sorry this is happening so quickly. My DH is 67 and the progression this year, after his diagnosis last October, has also seemed fast to me. We have an appointment with a neurologist next month and I know I will hear something similar to what you just heard. Managing emotions is important, as I know that is what is needed to keep my DH calm and steady, but there is so much pain and sadness and loss of myself as I do what is best for him. However, I know that focusing on what will make him happiest, calmest and give him the best quality of life possible is what I must do, and I just hope I am strong enough to do that for the course of this illness. It is still hard when my partner of 46 years is not "there" anymore but I'm learning and growing stronger as we go through this together. This is not easy, but I'm grateful I am able to care for him as long as possible and are still able to have some special moments. And, I love that ice cream was in your after appointment plan- ice cream is definitely an important part of our lives!

Jeanne C.

Thanks everyone. Your support is crucial to my well-being. We just keep going, don't we? I'm in awe of you all. Some of you have been doing this for so long. Fast or slow, this sucks. But I love this man more than I can say and I'll keep going for him.

Elshack

Jeanne, So sorry to read of your DH's progression. Be sure you have your wills done and a new POA if he had been yours. Others here suggest seeing a CELA attorney. Be sure you read as much as you can re: Alzheimer's. The 36 hr Day is a favorite book to understand alot of the complexities.

Remember every case is different but I found if I handle it day by day it helped. I am now into my 7th year and 5 yrs ago he had brain surgery for brain bleeds so that accelerated his progression. Last year I had to move him to memory care.

Be sure to come here often as this place has been a great support to me. My heart aches for you as we all share this terrible journey. Believe me, everyone here knows what you are going through.Try to find some joy in each day and I know it is very difficult but try not to concentrate on what the future holds. Just be sure your finances are in order and see an attorney if you haven't already. Sending virtual ((( hugs ))).

neeta

https://alzconnected.org/discussion/66784/progression-confirmed-and-my-heart-breaks-a-little-more

https://alzconnected.org/discussion/66784/progression-confirmed-and-my-heart-breaks-a-little-more

neeta

I have a question regarding the stages. How is that determined? My husband has dementia - he has mobility issues, is incontinent and has memory issues. He had a PET scan done in April 2022 and it read "favored to represent frontal temporal dementia over Alzheimer's." He had a neuropsych test last August by the neuropsychologist who stated he was significantly impaired in all functions, such as executive function, memory/learning, etc. She stated he was in "middle-phase" and stated "support the diagnosis of frontotemporal dementia (FTD.) I never received any type of "stage. Is that the result of the MMSE test?

Jeanne C.

Hi Neeta, sorry you and your husband are dealing with this. The stages refer to the FAST scale. The scale is based on abilities. Here's a great link that others have shared: https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Ftala.org%2Fwp-content%2Fuploads%2F2019%2F04%2FTam-Cummings-LLC-Handouts.pdf

My husband also has FTD. It doesn't work exactly like alzheimer's though there are more similarities as the pwd progresses. There are quite a few of us caregiving for someone with FTD on this forum. If you have questions or want to talk, I recommend starting a new thread so it's more likely to be seen. We're here for you.

SDianeL

https://alzconnected.org/discussion/comment/186046#Comment_186046

here's another handout that someone posted that helped me understand the stages & types. I use this as a checklist and keep track of my DH's behaviors and communicate them often to his doctors. All of them. Because I sent them his behaviors they recently changed his diagnosis. Important because the doctors only spend a few minutes and don't see the behaviors. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf