Memory Lane

Brandon will be graduating next June and with that comes all the same activities and planning as I did just two years ago with Courtney. When Mike and I were planning our family, we desperately wanted to have our children close together. Our thought process was that by being so close in age, they would be on the same playing field, hopefully sharing the same interests and that they would grow up to be the best of friends. We prayed that no matter what, they would always be there for each other.
At this age, it sure doesn't seem to be the case. There will be occasional and very rare moments when the two of them will be talking, maybe even laughing together, and I wish Mike was aware so he could see that our wish may indeed have come true. When they argue and fight, a part of me hopes that Mike doesn't realize what is happening.
When Mike and I were planning our life, we didn't realize just how hectic things would be as our children, so close in age, got older. This year, Courtney is helping me with Brandon's yearbook dedication page. We spent one evening looking through boxes and boxes of pictures, looking for the photos we thought would epitomize Brandon. In searching through these memories, I was once again confronted with the past, and all that we have lost. Not just me and the kids, but Mike - and all that he has never fully experienced. I am so caught up in trying to stay afloat in the present, dealing with our daily struggles, that quite often I forget the life we used to have: the way Mike used to be, the relationship we had before we got married, his relationship with Courtney and Brandon, our dreams and hopes for the future.
I can be somewhat thankful that I am so busy each and every minute of the day, that I don't have the time to re-visit those memories. At any given moment, when I see a dad with his chidren, I tear up. I remember those days as though they were yesterday, and mourn for the life Mike never had to share with his children. Alzheimer's robs it's victims of those memories, those cherished snapshots of time and events that make up our past and create the person we are.

Thanksgiving....

A time of year to give thanks for all that you have.

I feel like it's Thanksgiving everyday. A few months back, I was struggling with so much and became angry, resentful and jealous. Strangely enough, it was a kidney stone that made me realize how much can be taken away in the blink of an eye. I was in such severe pain and I was so scared because I did not know what was happening. I immediately thought of the worst and I'm sure that fear made my experience even more difficult. After I was told it was "only a kidney stone", I was so relieved. When I think about what could have been......
Yes, Mike has been suffering with Alzheimer's Disease for 9 1/2 years now. When he was diagnosed, I never expected him to be with us for so long. I look back and think of all we have been through with him, all that he has suffered, and I am extremely THANKFUL that we still have Mike with us at home where he belongs, happy and healthy.
I am THANKFUL that me, my children and family are all basically healthy. Without our health, where would we be?
Two and a half years ago, my salary was cut drastically. This sent me into a downward spiral I have not been able to dig myself out of. I lost my health insurance because I could no longer afford the monthly premiums and along the way I have lost my car insurance, had my phone and TV shut off (they have all been re-connected...until next time). Yet in this economy, I am THANKFUL that I at least have a job. Each day I can wake up and go to work and know I will be getting a paycheck at the end of the week (no matter how small it may be :). There are many people out there not as fortunate as I am.
My car in almost 10 years old and we only have one (even though now there are 3 of us driving). I am EXTREMELY THANKFUL that I have a car and that it has been reliable and good to us. Each day it rains, snows or it's cold/windy, I look at the people in the neighborhood waiting for buses and I thank God I have my own transportation.
I am so THANKFUL that we have so many good friends, neighbors and organizations in our life that have been there for us these 9 1/2 years. We would have never survived this long without all their help and support. We also would have: no heat, no ramp or no bedroom for Mike and I - without the continued love and support from Mike's old co-workers. Each and every year they have never failed to deliver a turkey to us for Thanksgiving - that's 9 years! The fact that they have not forgotten us, for that we are THANKFUL.
I can go on and on, but I think I made my point. Even though we all have struggles and difficulties in life, we should still remain THANKFUL. Things can always be worse, for no matter how bad we have it, there will ALWAYS be someone out there suffering more than we are. I lost that mindset for a while, and I was miserable. Now each and every day I thank God for all that we have and all that he has given us.
HAPPY THANKSGIVING TO ALL THOSE WONDERFUL PEOPLE IN MY LIFE!

AFA Telethon taping

Last week we were invited to the taping of The Alzheimer's Foundation of America telethon which will be aired DECEMBER 4, 2010 on NBC.

The kids and I were thrilled at the opportunity to be witness to such a ground breaking event which took place Wed. Nov. 10th. This is the FIRST TIME in the 25 years that I have been dealing with the disease that such an event has taken place on National Television. We were honored to be asked - and as an added bonus, star struck with the celebrities that were present. Beside those at the actual event, there were very famous and powerful people who pre-taped messages to be played during the show about how and where to donate. Needless to say Courtney and I almost fell off the floor when our idol ELLEN DEGENERES, did her part. She has so many followers and she has the ability to reach so many people. I was beyond happy that she had agreed to take part in the telethon for this very important cause.

As you will see WHEN you watch the telethon, the Foundation focuses on the CARE for individuals and their caregivers. While research is imperative, organizations such as the Alzheimer's Association raises money for that. As Hector Elizondo so eloquently said, "while there's currently no CURE for this disease, we have to do all we can to help CARE for those with the disease". That was the main objective for this event. They touch on: young onset, day programs, the explanation of the disease, their "Quilt to Remember", and even how to get young children to understand the disease.

I was so honored that they chose Mike's mom's picture and Mike's picture as part of a tribute to those affected by the disease.

The taping was a great experience and as much as I would love for this to be an annual event, I pray that it will not be necessary.

Anniversary/Respite

Yesterday Mike and I were married for 22 years. This year, more than past, I had a difficult time dealing with the day. The night before I was dreading the day and I walked around pretty much all of yesterday in a funk. Maybe it's because of how difficult things have been lately, but for whatever reason, this anniversary made me much sadder than previous years.
We still have no washing machine so I spent my anniversary in the laundromat (the repairman came last week, but needed to order a part. He will be coming back on Tuesday). This is not at all where I pictured we would be back on that beautiful day 22 years ago. The future I had hoped for is no longer possible.
Brandon has also been having a difficult time with everything lately and I worry about him. I believe the reality of being a senior in high school and that he will be going off to college next September has really hit him. I also believe it's been hurting him even more when he realizes just how much of his life his dad has missed. The other day he said to me, "mom it's been almost 10 years. I was 7 when dad got sick!" That single statement put so much in prospective for me. I remembered when I was 17 and my parents divorced - I felt like my world had collapsed around me. I shared that thought with Brandon and he said to me, "at least you had both your parents until you were 17".. wow.. I began to second guess myself and the decision to keep Mike at home. Both Courtney and Brandon CONSTANTLY tell me that they wouldn't have it any other way, but did they realize at 7 & 9 years of age what they would have to sacrifice? Should I have made an executive decision to override their wishes? Once again I think about the two other woman who were in the same situation as I was. They took a different route - they divorced their husbands, placed them in assisted living facilities and remarried. Their children have countless opportunities that mine will never have. Just the other day Courtney went to the "study abroad" fair at school. She would love to study film in England. Her one friend from high school will be studying abroad in Italy for the second time next semester. Courtney just wants to go once, yet when she heard the fee was $17,000.00 PLUS, she knew it was impossible. I asked her to check and see if her financial aide and student loans could be applied but she doesn't believe so, but will be check it out anyway. Meanwhile one of the children in the other family has been to Europe twice. Once as part of a Student Ambassador program, the other with her family.
Brandon said to me, "mom something good HAS to happen soon". My heart broke for him. They see our family doing all the "right" things, but sinking deeper and deeper every day while those who took a different route (whether right or wrong) and chose not to devote their life to caring for their spouse, being rewarded.
"Faith" - I tell Brandon, and I explain to him how much I have been struggling lately.

Then it hits me, it's been 5 years since the kids and I have been on a vacation - I mean a REAL vacation. We have taken "trips" to DC and Pennsylvania, but with all the running around we did, I would hardly call them a "vacation". RESPITE - something imperative that we do not get. Five years of 24/7 caregiving with no rest and I believe we have finally reached our breaking point. Sad part is, there's no way for us to change that situation. I feel better knowing that we haven't "given up" and it's the simple fact that we are all tired, spent, worn out from giving so much yet not being able to rejuvinate ourselves. It could also be a contributing factor in why we have been arguing alot more lately.
Courtney is 19 and Brandon is 17 - they are teenagers. Teenagers who never had their dad the way most children do. Children who have devoted their lives to caring for their dad, when it should have been their dad caring for them.

Caregiver Conference

Yesterday I was asked to be a part of a Caregiver Conference held at a local nursing home. It continues to amaze me how many caregivers are out there desperate to find guidance as they navigate their way through the Alzhiemer's Disease maze. As with the others I have participated in, this one had speakers and workshops - all designed to help those caring for a loved one with some kind of dementia. I don't think they ever had any when Mike was first diagnosed, at least I was not aware of any. It's a wonderful "gift" for these professionals to give back to people who have entered into a very scary, unpredictable world.
I was part of a panel that included 6 caregivers - 3 of whom who care for an older parent, 3 caring for a spouse with "young onset". All the stories were unique to the family, yet similar for the disease. I am always proud to sit among people who have gone above and beyond in caring for a loved one, whether it be at home or in a nursing home. Unless someone has walked in our shoes, they cannot possibly understand, so to sit with others who have gone through OR who are going through the same tragedy, makes me feel "safe" and comfortable. When I take part in these events, I feel like I am with extended family.
As I was walking to my car afterward, a woman drove by and stopped me. She was also a part of the panel, but we did not get to speak very much before or after the presentation. She slowed down and rolled down her window, put her hand on her heart and started to cry. She expressed her shock at Mike's age at diagnosis and wished me well. We spoke for a bit and she went on her way. Fellow caregivers can communicate with very few words - often none are needed. We know in our hearts.

Back on Track

After last week's scare with the kidney stone, I was able to get myself "back on track".
It seems as though the negativity and depressive tone of my mom and brother had been bringing me down. For years I was always the one that had the positive outlook, but lately (and as you all can attest to), I have been in a "bad place". Last week, I turned the corner back to where I am supposed to be. I prayed alot and just made my decision that no matter how bad things are, they can ALWAYS get worse. This is the mantra I would repeat to all who know me, but I lost sight of that. Obviously, it's easier to just feel beaten than it is to fight, but now that I am feeling better and for that brief glimpse saw what could have been, it gave me renewed energy to continue on my positive track.
In fact just this morning, I was already tested. My mom was doing her daily laundry at my house when all of a sudden we heard a "crack". I thought the washer door had broken. When I inspected the machine I saw that the rubber around the entire drum was basically "mutiliated". I could have gotten really upset and said, "here we go again", but instead I said, "Thank you God that I have an extended warranty". Even though the repair person can only get to us on Tuesday, I feel blessed to have the extnded warranty to pay for the repair.
I'm back to the place where I want to be - no health insurance and all......

I am feeling better than last week, although not 100%. I still feel discomfort, which concerns me. A VERY DEAR FRIEND of mine is having one of the Urologists she knows review my CT Scan to make sure everything seems to be OK. My problem is that I read my report thoroughly and it mentioned a number of other issues that I now have on my mind. While it's in the report in black and white, I am hoping that the issues are not as serious as I think they are, and they may be issues than many people have. I am trying to remain calm.
Mike's hospice social worker came by this morning. My mom had just mentioned to her about my visit to the ER last week and I apologized that I couldn't stay and talk because I was running late for work. Despite this, she says to me as I'm walking out, "Have you thought about funeral arrangements? I was not assigned this case in the beginning and it doesn't look as though anyone has ever spoken to you about this". Yep, this is what I was asked as I was walking out the door to work. Her question isn't what bothered me, so much as it was the timing or her lack of consideration. I just looked at her and said, "I've thought about alot, but I have too much on my mind right now and I'm getting too upset before work". I drove to work in disbelief, not sure where to even begin.
Murphy's Law has been in full force the past few weeks. I need to constantly remind myself to dwell on the positives and blessings, rather than the negatives. Thank you all for your prayers.