DW with EO

ShaneA

Forgive me for starting a new discussion. I am so thankful that there is a community of supporters helping us all through these life challenges. In short my DW was genetically tested for EOAD because her sweet mother carried the gene, and passed away in June of 2008 at age 52. We are currently going through the same thing with my DW that is 48. I know I cannot control or influence the quantity of her life but can influence the quality of her life. Her goal is to see all 50 states and we are down to 4. It is such an emotional struggle to watch as her husband of over 26 years. My two daughters and I spend a lot of time talking and cheering each other on, however, I thought I would throw a life-line out in the world to strengthen my support network.

CindyBum

Hi Shane,

Welcome to a warm, caring place in a group none of us ever wanted to join. What you are doing for your wife is so beautiful, even as I know how much it must be tearing your heart apart.

Folks here are super supportive and helpful. I hope we can become another outlet for you on this difficult journey.

Cindy

Ed1937

Don't apologize for starting a new thread. If nobody did that, the forum wouldn't exist. This is an excellent forum for support and understanding. I'm sorry the two of you are dealing with this now.

I think visiting all the states is something that you will be proud of in the future. That's exactly what you need to be doing until you can't any longer. Enjoy life together.

Does she actually have a diagnosis yet? If so, at that age she should have no trouble getting Social Security Disability. There are a few things you need to get done, and seeing a CELA (certified elder law attorney) is one of the things you want to get done soon. Don't let the name "elder law attorney" stop you from seeing one. That's what you need, even at her age.

ShaneA

We traveled to the University of Washington in 2004, received the news she had the EOAD, we set a goal to get our daughters graduated from college and high school, they did that last year and now we are in the thick of it. She has not actually “been diagnosed” by an MD, however the signs are evident. For the past two years I have noticed the signs, she has been “covering” them and putting on a pretty good show, for me and our small community, however, more and more people are talking about her and it has been hard because she has always been a dynamic woman (she has made me who I am today!) and good meaning people come by to see for themselves. I had to take her keys away this spring, she doesn’t cook, anymore and the hygiene and dressing is challenging now. We have passed most of the hard emotional things. I am blessed that she has a couple of great girl friends that take her out and have fun. Recently she was called to serve on jury duty, which caused a stressful situation but I received a great letter from a doctor friend of mine to allow her to not have to serve, because it would be a devastating and challenging event for her. Even two months ago she was concerned about what locals would say about her, now it is not so much. I am a business owner and it is hard to split my time at work when my heart is at home with her. My next move will be bringing someone in to help her at home and have company….

Ed1937

"We traveled to the University of Washington in 2004, received the news she had the EOAD". Something doesn't sound right here. Could that be a typo?

upstateAnn

You are blessed in your compassionate community. My husband was called for jury duty recently. I called and said he had dementia, but expecting I would be asked for doctor’s notes, etc. The kind administrator simply offered sympathy and said she would strike him permanently from the jury roles. People can be so good.

ShaneA

Sorry it was a little confusing. It was more like 2006, when we received her genetic testing results specific to the EOAD genetic mutation. We were told that to that point in time Dr. Bird had only found 10 families in the world that carried that genetic mutation. My DW has lost her mother, (2) uncles, a grandfather to EO.

SDianeL

Shane, so sorry you are going through this with your DW. So great that you are focusing on the quality of life. Before my DH was diagnosed 2 years ago with ALZ-Posterior Cortical Atrophy we traveled in an RV full time for 12 years. We put 171,000 miles on the RV. Visited every state except Hawaii & even went into western Canada. So glad we did it then. Also my sweet sister also has Dementia. It's heartbreaking and terrifying. Sending love, hugs & prayers.

JamesDenney

The hardest part for me was when my DW asked if her husband died. It literally broke my heart. The second hardest thing was watching how the kids and grandkids cope I have trouble asking for help but sometimes I have appointments or just need go to the store. When I do it hurts to see them start to try to think up excuses.

M1

Hi james, welcome to the forum. You will get more responses if you start a new discussion.

It is devastating when our spouses don't recognize us any more, much less remember the shared history we have. Have you looked into day programs, or memory care facilities in your area? Or having an aide come in so that you can do errands? Your local Council on aging may be able to tell you what's available. Good luck.

ShaneA

I am struggling with similar issues of how do I transition into a better caregiver for my DW. It is so challenging when my DW that is 48 years old doesn't want my help in dressing, personal care, etc. I know inside she is still embarrassed that she cannot do these simple tasks. I am looking for a counselor to help me cope and at least "know" what to do next. Word is spreading in our small community and it is interesting how much "help" I am getting about "what is out there" for therapies that we should try. I understand people are just trying to help how they can but somedays people say the most insensitive things. The blessing is through all this is that she is relatively happy.