I'm so sorry to hear that your husband has AD. I was in a similar situation about 5 years ago. My husband was 54 and was diagnosed with Atypical early onset Alzheimers. I was 44 at the time. When he was diagnosed he was already in the moderate stage, but we found out quite by accident. It has been five years, and I would say he is in stage 6 now. He has very little discernable verbal communication and he is incontinent. He is still ambulatory, however, and that is a good thing (although a little aggravating at times when he wanders around so much.)
I'm very glad you found this group. I have just started posting myself, and if you have any questions I would be glad to share with you. There are others that are regular "posters" who give very good advice. I think you will find a home here.
Keep your chin up and know that this is not the end of the world. Your husband and you will grow closer in many ways because of this. Do you have children? They will get an early dose of maturity as well, but I truly believe my daughter has come to love her dad even more through all of this.
I went through this too (about 9 years ago) when DH was in his mid 50s and I was in my mid 40s. At the time our kids ranged in age from 10 to 16. I recall that our first stages were panic and grief, as if DH was going to immediately die. DH did lose his profession immediately, as well as the ability to drive since his first neurologist reported him to our Department of Transportation. Life was turned upside down. He was unable to earn any money for six months before he qualified for disability. At one point I was reduced to selling the kids' piano to make a mortgage payment, but we made it through!
My first step was to make lists....lots of lists. We went to an elder lawyer for an hour of concentrated questions and answers, which was extremely helpful. I made more lists as a result of that visit, and then had the paperwork (Wills, transfer of property into my name, powers of attorney, living will) done by a cheaper lawyer. This was our #1 priority.
We got a few second opinions from neurologists. We had to decide how to tell people. We had to figure out how the bills would be paid. I had to figure out how to try to reassure DH and our children that I was SUPERWOMAN and that nothing would change. DH and I even chose the first year to renew our vows in a ceremony with the kids, so DH would know that we were all committed for the long haul and to give the kids another good memory. DH went into a NH about a year and a half ago, in Stage 6. He has now entered Stage 7.
Things weren't that bad for the first few years. I wish we had moved to a smaller house now, but at the time I didn't want to upset the kids any more than necessary. We got DH a puppy to keep him company and distract the kids. (That didn't turn out so well, since eventually the kids went off to school and DH was unable to help take care of it.)
I tracked down support groups, and read everything I could get my hands on. I found available resources where I live, even day-care centers, long before I needed to use them. I learned how to do as much as I could. I still remember how frustrated I got over changing windshield wipers and the furnace filter....small jobs, but you do learn how to be more self-sufficient. I constantly told myself that divorced women and widows go through this process every day, so I had to stop feeling sorry for myself. I wasn't always successful at that, but I tried.
There will be times that you get angry, and think "why me" and "he isn't trying hard enough." Then you'll feel terrible about your own shortcomings. There will be times when you're so lonely. You will learn to forgive yourself, and to just do the best you can. You will rediscover parts of yourself that you may have forgotten during the marriage. The loneliness will creep up on you as the illness progresses. Someday you wake up and realize that you've survived and that life goes on.
We can tell you to calm down, but I'm sure at this point you're still in shock. I remember grieving over the loss of my dreams for an old age together. I can tell you that you WILL be ok, and that you will still have many good years together.
Sooner is right that this can be a positive things for kids. Our kids became very responsible and helped with their Dad a lot. Two of our kids are now in graduate school (one in a health care profession), and the youngest is in college studying nursing with plans to specialize in geriatrics. Their lives were positively, not negatively affected by seeing how we handled their Dad's disease as a family.
This board is a life saver at times. There are people who have been through just about everything with this disease. They can answer questions about all of the stages. Every patient is different and no one can predict your particular path, but you will get a lot of good advice here.
Last edited by Beginning; 07-27-2011 at 06:15 PM.
The following user gives a hug of support to Beginning: ann1970 (08-02-2011)
The Following User Says Thank You to Beginning For This Useful Post: ann1970 (08-03-2011)
Beginning is definitely the pro She has been where you are. Just take it one day at a time, get your list in order, and don't forget to take care of yourself as well This is a great sight for venting, support, advice, and tips to make life a little easier! Glad you are here, but not why you are here, and hope to hear more from you!
Not a lot I can add to what has already been said. My wife was 52 when diagnosed with Pick's Dementia 4 years ago. It's not an easy thing to go through, but you will find you are so much stronger than you ever thought you could be. And you will make it.
It's been over two years since my wife died, and I find that I really cannot recall so much of the stress and sadness that we went through. My youngest daughter is now a senior in high school, and is very well adjusted and happy. So keep the hope that life will get back to a NEW normal.
The lists and doing things ahead of time are VERY good advice. Even after two years, I'm still making lists and tend to get things taken care of way ahead of time.
Keep coming here for support. This board got me through some really tough days. Also find a local caregiver support group if you can.
i am so sorry to hear this. its early and hopefully meds will work. its hard to stay calm, but remember take care of yourself so you will be able to try and handle this. keep posting. this board so does help.
The kids will follow your lead, and you'll be surprised how they adjust. My 10 year old grew up watching cartoons with her Dad, helping to keep track of him in grocery stores etc. By the time she was 17 she was helping him with personal care, putting his seat belt on and helping in 100 other ways. Things progressed so slowly especially for the first year or two that we all adjusted to each stage fairly seamlessly.
We also had a 14 year old (in between the youngest and oldest) when DH was diagnosed. 14 can be a tough age but this kid also adjusted pretty well, except for not wanting me to tell anyone at this kid's school about the diagnosis....many kids that age don't want to be different from anyone else. DH didn't want to tell a lot of people right away anyway. I got to teach the 14 year old how to drive, with DH in the back seat.
I recommend taking lots of pictures now, especially for the 4 year old. She may not have memories of her Dad when he was well, except through photos of happier times. The photos with their Dad will mean a tremendous amount to your kids someday. You will still have many happy experiences. My kids have pictures from amusement parks, holidays and just every day things that they did together even in the years after DH was diagnosed. The kids look at those pictures, and it reminds them of their father's love for them.
Last edited by Beginning; 07-31-2011 at 05:11 PM.
The Following User Says Thank You to Beginning For This Useful Post: ann1970 (08-02-2011)
Ive been informed by my husbands consultant that he is in the early stages of dementia/alzheimers,hes only 52 and im 40
I am so sorry that he is so young. You didn't say who the consultant was. Was he diagnosed by professioanl doctors like neurologist or psychiatrist?
It is indeed quite early to have AD. It is early onset AD. Alzheimer's is a type of dementia, do you know for sure it is Alzheimer's?
I would first to make sure it is correct by going for second opinion and etc.
However if it is confirmed, you need lots of support and it is a long shot even though it is shorter than regular onset AD.
You are so young... Please come here and share with us anything. We are here to support you.
he had been seeing a consultant Nina,he was waiting on more tests coming back before he will say anything,the results must be back cause he wants to see us on the 24Th of august. I'm still finding it hard to get my head around it, ive explained the situation to my eldest daughter and she understands,its the young one i would be more worried about,she her daddy's wee girl and she has become awfully attached to him lately.