New EO AD caregiver needs someone to connect

Lindacap

Hello,

My husband was diagnosed with EO AD in August 2020. He is 62 years old Symptoms started three years prior. I've accomplished a lot in the past six months from putting legal and financial affairs in order, getting SS Disability, and enrolling him in clinical trial through MGH.

I would love to connect with others who are going through this. 

I am terrified of the future, especially while trying to hold down a full time job. Still, I'd like to know what's in store for us.

Thank you.

LaurenB

Welcome to the group Lindacap!  There are many people here who are in a similar situation to yours.  I'm the 40 something child of a PWD who is in their low 70's.

Arrowhead

My wife was diagnosed at 61. I was able to continue working for a couple more years, but we have a grown son who lives with us. I retired at 64 because I felt she needed me to be there. So far you have done well getting his legal and financial affairs in order. Many people don’t do that until it’s too late. All of us who have gone through this understand your fear. The progression of the disease varies from person to person and changes over times. There will be better times and there will be worse times. I recommend reading 3 books. First, THE 36 HOUR DAY by Nancy L. Mace, MA. And Peter V. Rabins MD., MPH. Also, LEARNING TO SPEAK ALZHEIMER’S by Joanne Koenig Coste and Robert Butler & THE COMPLETE GUIDE TO ALZHEIMER’S PROOFING YOUR HOME by Mark L. Warner. Tough times are ahead, but you will be amazed to learn how much you can endure.

French

Hello, my partner is 51 years old and diagnosed 2 years ago. I am 49 years old and still working, with still 2 teens at home (not his child).

I can’t say that I am terrified of the future, i try not to think. I just think I won’t be able to continue for long like that, so I try to organize some plans. 

I give myself step by step objectives.

2020, it was to organize a home caregiving and try daycare. I now have a week’s organization that is better for everybody... but still it is relying on pieces of string and requires a lot of time to manage everything. This + working + children, I don’t know how long I will be able to manage.

 2021, My objective is to resist to this new year ( the 4th) but also to have a plan. I promise myself and my parents who are very worried about me, to implement it if it becomes too tiring to take care of my partner, to continue to work and take care of my child. Indeed this year I begin to notice that they get disturbed by the situation and some tensions appear. Here we had curfews and lockdown during one year and being teens, locked at home with an Alzheimer’s step father is certainly very hard for them.

I am counting days. We passed 1/5 of the year and I still resist... while waiting the next holidays break in 6 weeks.

Jo C.

Hello Lindacap and a very warm welcome to you.   What a wonderfully proactive person you are - you are taking the active steps to protect matters into the future and that puts you in good stead.

It really is good to interact to others in similar situations; in this light, I would like to invite you to place a Post on the, Spousal/Partner Forum.   There are multiples of Members there who are caregivers for their Young Onset Loved Ones (LOs.)

We can Post anywhere we wish, and the two most used Forums with most information are this, the Caregivers Forum, as well as the Spousal/Partner Forum.

I send warmest of wishes your way, as is often said, this is not a sprint; it is a marathon, but you will find Members who share an early onset experience onset and can share with you.  Please do check out the Spousal Forum too.

Let us know how you are and how things are going, we truly do care.

J.