I feel so lost.....

Suzadoo · November 2023

Im new here. My name is Susan Ascher and my husband, Chris, has younger onset Alz and was diagnosed at 62 in March of 2021. He is now in FT care as of August 1. It's been insanely difficult to navigate and he has moved along quite quickly. We are married only 14 years and do not have any children. I noticed changes when he turned 60 so really feel like we are on year 5. I did the best I could until now....my heart aches all the time despite being oddly comforted by the care he now receives. I am 59 and feel a bit lost......this entire dementia category is so underserved. Neuro Docs are great at what they do but offer little to no CARE. I feel like I have been on a spin cycle for 5 years. It's a very challenging road and am jsut looking for support. The expense is ridiculous and not sustainable. Hard to fly the flag for this disease when no-one ever wanted it......I miss Christopher desperately. He is kind and sweet but the decline is real. For sure it's active grief this side of heaven. Where are the drugs that make it go faster. Its brutal!!! I think they are studying the wrong thing. I would welcome any thoughts on how to do life as we navigate hospice. Just feel so empty without Chris.

JeriLynn66 · November 2023

I’m so sorry for your pain and that you need to be here.. as a former Hospice RN, I can tell you that Hospice nurses, social workers and chaplains are truly experts in the grief process and I would encourage you to reach out to them. God bless you and your dear husband Christopher.

Katielu · November 2023

Suzadoo,

I am sorry for your pain. Yes it is an awful disease and so overlooked. I am 60 and still working, my DH is 72. He is home, no insight into his disease. His decline has been quick, although the Aricept has helped. I have him home, cannot imagine the expense you are dealing with each month. Maybe helps a little to know you are not alone. Others are battling this disease on their fronts.

take care of you, Hospice is great at helping the family as well as the patient.

chelle03 · November 2023

I’m also new to the group and look forward to insights to be found.
Your situation resonates with me and I can understand how difficult it must have been to transition care.
My Hubbie of 41 years is 66 and in complete denial about his symptoms—unable to understand time and completely lost with numbers. He’s refused the MRI. He’s still driving but not often alone. I worry every time he’s alone, even at home.

charley0419 · November 2023

Stop the driving. If anything happens and they look into his health and wasn’t reported could be issue for coverage, they look for slightest infraction to not cover not to mention safety of others

JDancer · November 2023

Chelle03- Please stop your DH from driving. It's not safe for him or anyone else on the road, especially for those of us that walk and/or ride bikes. A simple tap by a car can be fatal. Please don't let him drive. I know it's difficult, but lives depend on it

SDianeL · November 2023

https://alzconnected.org/discussion/comment/188014#Comment_188014

please stop the driving. My husband had a 3 hour evaluation with a Neuro Psychiatrist. She called me right after and said under no conditions should he ever drive again. I was shocked. She explained that he had visuo-spatial difficulties and could rear end someone. She also said that once the diagnosis was in his file that if he were involved in an accident, even one that wasn't his fault, we could be sued and lose everything. I told him what the doctor said and the next day he brought me his car keys. The only thing I noticed about his driving was that he was driving very slowly and hitting curbs. Speak to his primary care doctor and get a referral to a Neurologist. He needs to be evaluated. Do you have a DPOA? If not, get one immediately while he can still read and sign his name. Find an Elder Law Attorney and tell him you are both getting them if you have to. That's what I did. He went willingly.

Jgirl57 · November 2023

Suzadoo , I hope posting here made you feel a bit better. I am glad you will be starting hospice for your husband. Others have found that hospice will be a support for you as well . Wishing you peace for what’s to come.

LJCHR · November 2023

It is so hard to take away their privileges (driving, etc). But talked my DH into giving his car to our grandsons. He was proud to do that and has never asked to drive again.

My DH was diagnosed August 2021 but has not progressed as far as yours has. I haven’t left him alone for over a year now - and getting better at “fiblets”.

One of the saddest days for me was when I realized I no longer saw him as a husband but rather a child.

This is a dreaded disease but thank goodness for this forum.

charley0419 · November 2023

The driving really put wife in bad state for awhile better now suffers from anosognosia , diagnosed about yr ago. I see big change in short memory loss and confusion. Everything else you’d never know. That’s now!

I feel so lost.....

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