Beginning

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.