Friday, June 29, 2012

Trying to Find My Way

Since my husband Mike passed away I have been in a strange place of limbo. For 11 years I devoted my life to caring for him. Alzheimer’s was an every day conversation and the disease controlled our lives, whether it be a problem with an aide, an illness or insurance issue - Alzheimer’s was always at the forefront of everything.
Now that my husband is not here, the direction of my life has changed and Alzheimer’s no longer rules our lives. It is still a constant in our lives and I still advocate, and I will continue to do so until a cure is found. This disease will NEVER be far from my heart and soul, but the ravages of the disease and the havoc it caused, is now gone.

So now I am trying to find my place, my purpose if you will. I have so much time on my hands, I don’t know what to do. I never truly understood how much time I put into Mike’s care, until I didn’t have to do it. The kids and I often discuss how weird it is to not have to be home at a certain hour to help get Mike into bed, or to make sure someone is always home for him. It seems unnatural to us. Believe it or not, four months later and I STILL find myself making plans around Mike’s schedule.

I’m sure this is a natural process and one in which thousands of people go through on a daily basis. We will just need to continue to try and find our new normal. I hope to find a facility in my area where I can volunteer with Alzheimer patients. When Mike was hospitalized, I would feel so bad for patients where it was obvious they had some sort of dementia, yet no one ever showed up for them. I’m sure that scenario plays out in nursing homes each and every day. I would love to be able to donate some time to sit with these people and keep them company - help them feel like their life has meaning, that somebody cares.

Even my writing has slowed down. Caring for Mike created so many obstacles and issues that I could write about and share with others. This allowed me the opportunity to share with other caregivers and possibly give strangers hope and guidance when they needed it. I’m sure there will be a day when I will write about issues that I had dealt with in the past and how they were conquered, but for now, looking back in depth is still painful.

The kids and I have used the extra time to do things we were never able to do. We try to keep busy by doing things sometimes as simple as going to the movies at night. Although money is still a worry, I have made it my mission to plan a vacation for us in August. The kids and I will be visiting California, a trip we had always wanted to do, but never had the opportunity. We are all very excited about it as this will be our first trip in 7 years!

I mentioned money issues above, and as an aside I can honestly say I was absolutely shocked when I found out that I did not qualify for Social Security Death Benefits because I am too young! I have to wait until I am 65 before I can file a claim to receive benefits from my husband, even though he was on Social Security Disability before his death. Things were rough when I had my salary and Mike’s small Disability Income, but now I have only my salary. Alzheimer’s has a way of financially destroying young families like ours. My husband never had the chance to save for retirement or plan ahead. He was 36 when he lost his job - most people are just beginning then. The “average Joe” just doesn’t understand the true depths of destruction that Alzheimer’s causes.

On that note, I am honored to report that I was approved as an Alzheimer’s Association Ambassador to my local Congresswoman Carolyn McCarthy. The Alzheimer’s Association appoints Ambassadors throughout the 50 states who can personally meet with Congressmen/women and Senators on issues important to them. I am pleased that my advocacy work will continue in this way, and look forward to being a part of a team that can make a positive move toward a possible cure.

Friday, June 8, 2012

Surprise Visit

Last night the kids and I were watching TV when the doorbell rang at about 9pm. We don't get many unannounced visitors, and if we do, it's usually our friend Tom. Last night we got a visit from my friend Betsy's husband - also named Tom.
If you remember, she passed away last July from ALS. Courtney and I had just visited her at the the hospice facility and a few hours after we left, we got the call that she was gone. She left behind a husband and two sons.
Her husband and son came to Mike's wake, very sympathetic as to what we were going through.
Last night he came to the house and we all had a nice visit. He had the kids laughing - which is always a plus. We caught up as to what was happening on their end, which seemed like all good things. Betsy would be happy. He also shared news that he met a "woman friend" and was happy to get out and talk with someone who didn't need "zit cream". Betsy passed away on July 4th. The woman he met has a birthday on July 4th and the relationship she was in had ended on July 4th - around the same time of day that Betsy had passed. I told Tom that I truly believe in a higher power and that him meeting this woman, who had so many connections to July 4th, was Betsy's way of giving her approval.
It was nice to see him and catch up and see that it is possible to be happy after the loss of a spouse.

Friday, June 1, 2012

Summer Begins

It's been a while.
Since I last wrote, Brandon celebrated his 19th Birthday (May 14th). For 8 of the 11 years Mike was sick, he wasn't able to go out and celebrate with us, so we always ordered dinner and brought it home. This was the first birthday that we were actually able to go to dinner and eat out. It was bittersweet. We had a wonderful time, despite eating out with two older people (one with celiac disease who can't have gluten) and a brother with bad teeth who finds many dishes hard the chew - and tells the waiters the same. Always an adventure!

My nephew came in from PA to visit with us. Since he had graduated from Penn State and began working at Accuweather (yes, we have our own personal meteorologist!), he has had very little vacation time. We were honored that he chose to spend a few days with us. He, Courtney and I went into NYC to see The Best Man - a play on Broadway starring: John Loroquette, James Earl Jones, Eric McCormick, Candice Bergen, Michael McKeon and Angela Lansbury. The show was great, but the best part was "stage dooring" it and getting autographs and pictures of all the stars! We also went to dinner and hit up some miniature golf (yeah Courtney and I both got holes in one) before it was time for my nephew to head off to his next destination before his vacation ended.

After all that fun stuff it was time to get serious. Courney, Brandon and I picked out Mike's headstone. What a process it was. There were certain things we each wanted on it, but coming to an agreement between us was proving difficult. Then the patient woman helping us suggested that we go outside the showroom to view some headstones that were recently ordered. We all fell in love with one, then went back to the books and mixed and matched certain items to come up with our own unique and beautiful headstone.  It will take approx 6 months for it to be completed. I had not known that the Diocese has to first approve the drawing before it can even go to the stone cutter.
Afterward, the kids and I headed over to the cemetary (right across the street) and visited Mike's grave. We had done some planting a few weeks earlier, but when we got there, we saw what we planted had been mowed down. On Memorial Day weekend we went back and re-did Mike's grave with beautiful flowers and an angel statue. Hopefully all will be there whe we head back on Father's Day.
Father's Day, that will be a day that I do not look forward to. A friend had suggested that we do things Mike liked to do, things that he enjoyed. I thought about that for a moment and realized...Mike didn't have  many opportunities to do fun stuff before he was diagnosed with Alzheimer's Disease. Most of his "healthy" life was before we were married and had children, and that included going out with friends and drinking. Once the kids came along, they were our focus. Courtney and Brandon were Mike's livelihood.  I decided that all of us would sit and watch one of Mike's favorite movies of all time..."The Quiet Man" and have sauerbraten (his favorite meal) for dinner. It would have been a perfect night for Mike.
The other day it was three months since Mike passed and both Courtney and Brandon brought it up. There are days when we feel as though it happened yesterday and other days when we feel like it happened so long ago. There are also days when we still think he will be coming home from a long hospital stay. I've been getting emotional driving home from work also. I keep going back to THAT day when my brother called me and said, "you may want to come home. Mike's not breathing". I stayed on the phone with my brother the entire ride home, asking him to tell me what was happening, begging him to hold Mike's hand to let him know that he was not alone. There are just some days when that drive home brings everything right back up to the surface. Some days are harder than others.
On a different note, the kids and I are beginning to finalize our plans for our much needed vacation. It's been MANY years since we had a real vacation, and seeing the excitement in their faces while they plan this trip has been worth everything. It's been so long since they were genuinely excited about anything. We will be going to California in August - although there is a negative. MUCH to Courtney's dismay, "ellen" will not be filming then, as she is on hiatus over the summer. Yes, this was a BIG disappointment to her, but one day, maybe we'll get there!! I'm sure, despite not seeing ellen, we will have a wonderful time.