I will be married to my husband two years on March 17, 2011. When I met him, he was a computer programer making good money and appeared intelligent and alive. In the last six months, he has deteriorated to the point that he had to be placed in a long term care. He is in his fifties. I am also in my early fifties, and am supportive three daughters in college. I have to work, and I am unable to care for my husband at home. The cost is $2,000.00 per month. Thank God he has a pension from past employment. This has been a devastating experience, that I did not see coming. I feel resonsible to take care of him, but it is very taxing. Is there another member who can relate? I would love to hear about your coping mechanisms during this long, dark assignment and trial.
Welcome CynthiaC. My husband has FTD and was diagnosed two years ago at 58 and I'm 52. I don't have any advice for you as we have been married 32 years but wanted to welcome you to this very caring place. I hope someone will be able to help you.
You said that your husband has a pension. If you are in the U.S., is he eligible for social security? If so, and you haven't already, file for social security disability.
It's very hard when something like this comes so early in life and so early in the marriage. There is barely time to really get to enjoy your relationship together. My wife got AD in her early 50's too. We've known each other quite a while though.
I want to welcome you too. And I agree it's very taxing on the financial end. There is a lot of information here that can help you on a wide range on topics. Try the search feature and perhaps the advanced search.
Please don't blame yourself for not seeing symptoms 2 years ago. The changes can be so subtle we overlook them early on in the disease. I am much younger than my husband who also was vital, active and strong. It wasn't until I was away 2 years ago in Iceland helping the kids with their summer homes which they rent out, that I began to see that something was not quite right. At first I thought it was his vision as he was always, several times a day, and certainly every day, looking at the paper to see the date...this led to the series of doctor visits and finally we got the devastating diagnosis. This is one of the sneakiest diseases of all...
There are a a couple of people who are in the younger set, as you are, that are shouldering this experience and will relate. However, do check out the threads as there are many who are a bit older who have wise sage advice. You will find this site to be most helpful and supportive. We are all here, regardless of age or onset time, to support and care for each other.
Welcome to Joan's Place..she will be along herself to welcome you too.
Looking back, I now know that the signs were there long before I suspected real dementia. But I made excuses for him, just like many of us did. I think that the cognitive problems showed up before the memory started to fade. The abstract thinking that enables someone to connect what's on a road map to the 'real' road was the first thing I noticed and just couldn't believe. I thought if he tried harder surely he'd get it, as this was an educated profressonal. The next thing was the inability to come to a logical conclusion from a paragraph in the newspaper he'd just read and then I really began to worry. I excused the first psychotic episode, thinking that it was my fault for making him attend a social function that didn't interest him. Total inability to follow even the simplest directions was an eye opener, but It took me six years to get real and by then he was a solid stage 5, where he stayed until about a year ago. Then there was a very sudden drop to stage 6 with no plateau, just a downward slide that resulted in ALF placement last fall. We met just 8 years ago this past Jan. and were married that summer.
Very few of us "see it coming"....for several different reasons especially when a person is so young; and it is sneaky the way it first shows itself. My DH hid the confusion well and made excuses for the memory loss, so did I....believing it was the stress of his job, or issues at home, Now looking back I can see more clearly what I didn't see then. I know, as we all do, that it wouldn't have changed the outcome...as far as the disease progression. CynthiaC, please continue to post here, and welcome to our cyber family.
sounds like your in the same position as I am,LO an I are older but since he has a pension an with SS you have the long term care covered,see an elder care attorney,I'm thinking his long term care will be covered
You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members, which definitely applies to you and your husband - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
As for your question about coping during this long, miserable journey - that is what this website is about. Be sure to check out the "previous blog" section on the left side of the home page - www.thealzheimerspouse.com- and look through all of the blog topics. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Even with all that, your situation is somewhat different because of the short time you have been married. I have brought to the top of the discussion board a topic related to a marriage of short duration. It is from 4 years ago, and that was the only time that woman participated on the boards, so I have no follow up, but you may find the discussion interesting.
I know exactly what you are going through. I had to remarry my ex-husband on Mar. 19, 2010 because he had closed his law practice because of his memory issues. I had to get remarried in order to put him on my health insurance at work. We also have two twin sons who are 15 years. I never expected this. It all happened so fast. He has been to several facilities however I chose to quit my job and take care of him at home. I couldn't stand to see or hear him suffering at those awful facilities. Our sons wanted him at home. It's very difficlut financially. We have no help from either side of our families. I don't regret having him home even though sometimes I want to pull my hair out. He is still active however and has a volunteer job. For how long I have no idea until his employer finds out he has dementia. All I can say is hang in there and pray alot. God be with you and your family,