Friday, March 30, 2012

Forgotten Words

I was going through old files on my computer when I came across this. I remember writing it one day about 2 years ago, thinking that when "the time" came, I would not have my thoughts together in a way that I wanted, to express my love for Mike and my gratitude for all those in our lives who made our journey easier. I decided to post it here, since I just found it and never had a chance to read it at Mike's wake. Thank you.
I would first like to thank everyone for coming.
These last 11 years have been difficult, heart wrenching, exhausting, to name and few, but they have also been filled with the most joy and unconditional love we have ever experienced. I can say that on behalf of all who have had the pleasure of knowing Mike and loving him all these years, he was our hero. He took care of his mom while she suffered through this disease and when he was diagnosed, his sadness was not for himself, but for his children and what they would have to witness while he deteriorated from this disease. But to all who knew Mike, that was him. He NEVER cared about himself, he was ALWAYS thinking of others.
This journey has definitely brought us all so much closer. No matter what kind of day we were having, Mike’s smile always brought a jolt of energy into the room. On your darkest day, his smile had a way of empowering us with love.
Today we would like to honor Mike’s true personality. He was funny, kind, generous and giving. When he forged a friendship, he took it quite seriously. He would do anything for anyone, no questions asked. He loved to read and do crosswords, often at times, to a fault. His children were his life and he looked forward to sharing a lifetime with them. Unfortunately, that lifeline was cut short, but what he taught Courtney and Brandon during his short time on earth could never be replaced.
As Mike progressed, he required more and more assistance. Courtney and Brandon were always there to help with EVERY aspect of his care, even some that most adults may find "uncomfortable". At night, when we would get him into bed, Mike often became more animated. Courtney and Brandon would often reminisce with him about things he did with them. One of the most memorable funny stories was Mike’s uncanny ability to shoot pencils out of his belly button and the kids found much humor in this. Although this was something Mike had done with them when they were really young, the memory is clear and it always brought such laughter at the thought. One night, I heard Brandon say to Mike, "remember dad how you used to sit with us while we fell asleep, now we’re doing that for you." At such a young age....they got it. They QUITE OFTEN passed on opportunities to go out with friends, and instead chose to be home with their dad, just as he would have done for someone he cared about. By keeping Mike at home with us created a bond like no other, and the love we all experienced will be something that they will ALWAYS have and it will be a decision that I will NEVER regret.
On this journey, we have encountered countless acts of kindness, often times from strangers. As a family, we had first hand experience of God’s true love. Even though we were going through such a difficult time, we were so blessed by all the people that stood by us and supported us. I was constantly reminding Courtney and Brandon how blessed we were to have such "angels" in our lives. I also couldn't’t express to them enough, that these people did what they did out of respect and love for Mike. Their kindness was a true testament to Mike and who he was and what he believed in. I found myself in tears quite easily because I was so humbled by what people had done for us.
I could not go without thanking certain people for their unconditional love and support. Without all of you, this journey that is Alzheimer’s Disease, would have been unbearable. First and foremost, I want to thank my family. I know it has taken a HUGE toll on all of you and I could never thank you enough for all that you have done. My mom and Walter were with us through everything. They lived through the worst of the worst and never said no to anything; My dad - even though he is no longer with us, while he was, he was my strength and my confidante. I KNOW that he welcomed Mike with open arms as Mike began his journey home. My dad was like a father to Mike, since he had lost his own at such a young age; My sister and her family - even though they lived in PA, they were always with us in spirit. They were available at any given moment; My brother - even though he had an extremely difficult time with coming to terms with Mike’s illness, like the rest of my family, he put his own emotions on the back burner to do what he could to help us out; Mike’s grandmother (who was also up in heaven waiting for Mike with open arms) - she had lost a daughter and nephew to this disease. Through all the years of his illness, she always called Mike, When he was able to speak, they had great conversations and when he could no longer talk, she would talk so he could just hear her voice. Mike’s friend Tom - He was a true guardian angel. He made himself available to help with ANYTHING we needed. Mike always considered Tom a true friend, and Tom constantly proved that Mike was correct. Tom has a wife and young children, he works long hours, yet he always found the time to help me with "house" things, things that Mike would have taken care of. I wish everyone here has a "Tom" in their life; Strober, the company Mike worked at for 13 years, Jeanne, Harry, Mike, Richie - they were our collective guardian angels. Contractors who knew Mike also donated time, material and manpower to help us make our home accessible for Mike ( Paul D changed our front room into our "bedroom"). Once again, Mike’s personality made it easy for these people to WANT to help. Mike C did not live close, but he came to our home and shoveled snow in the winter. When we lost heat in 11/06, Strober pulled off a miracle and had a new burner installed, at no charge. While we were waiting for this miracle to happen, they delivered heaters and blankets to insure that we would not go cold. Financially, they helped more than they could ever imagine and their support when we needed it the most, humbled us and made us grateful beyond words; My boss, my friend, Howard E - imagine running a business not knowing whether your only employee would be in on any given day. Not only did he allow me the time I needed for all the doctors, appt., tests etc, he did it without flinching; LIAF, Dr. W K and the Alzheimer’s Association - On some of my darkest days, these organizations and this doctor, made it their mission to make sure that Mike was taken care of. They always pointed us in the right direction.
Early Onset Alzheimer Disease is something no one should have to suffer with. As a family, we will continue to do all we can to raise awareness. Mike suffered with dignity, grace and humor. We will not let his suffering be in vain. We ask everyone here today to help our fight and honor Mike’s memory. We know it would be something he would do for others, and we ask that you continue this fight on his behalf.
Mike was our hero. He was a loving husband, devoted father and a wonderful friend. He will be missed by many, but none more than us. His "being" was our reason to fight and his love is what guided us. There is no doubt in our mind that he is in a better place with his mom, dad, brother, grandparents and Aunt. He is at peace and he is happy. He is free from the disease that kept him silent for so long. Please do not be sad for him. We will all miss him and that’s OK.
We thank all of you for the outpouring of love and support. We will ask only one thing of you as you leave here. If any of you know of anyone who is suffering from an illness, please do not be strangers to them. Call them, help with yard work, run errands, anything that will make their life easier. Visit with the ill person, and remember they are still the person you knew before their illness. Do not feel uncomfortable or sad. Now is when they need you the most. Mike would have done this for all of you and we ask that if you are ever faced with this situation, you step up and help in whatever way you can. We ask that you do this in memory of Mike. That would be the greatest gift you could ever give.


Claudia said...

Karen, my heart truly goes out to you. My husband also battles Early Onset. He was a little older when diagnosed at 59, but we had only been married about 5 months at diagnosis. He is now in his 6th year and last summer moved to a memory care community because of lack of support here at home. I tried hiring people, but he experienced different paranoia's about each.

I love him so deeply. I cherish each and every somewhat lucid moment.

Thank you for sharing your story. Thank you, thank you, thank you. It's not just a disease for "old people"; it's not just about "forgetting".

God bless you.

Karen said...

Claudia - I am so sorry about your husband. I have tried my best to advocate for younger people and their families since my MIL was diagnosed at age 45 back in 1985. Even with all the press my family has gotten locally, people STILL cannot believe young people can get Alzheimer's. I will continue to advocate, especially for Early (Young) Onset.
I wish you the best of luck and strength as you navigate this disease. Even though your husband doesn't live at home with you, you can still be a caring and attentive caregiver. When you don't have help at home, placing a loved one is sometimes best for all.
Good luck and stay strong.