Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Wednesday, October 14, 2009
Donations
This is a difficult post for me to write (since the main reason I decided to take part in this story to raise awareness) , but I am ONLY doing it because many people have asked how they can help, and where they can send donations. I have a VERY difficult time accepting help. I don't want any of you to think I am being rude by not getting back to you, but I have been in touch with Newsday because it appears that they have also been getting requests on where to send donations. I am waiting to hear back from the reporter as to what they plan on doing. As soon as a plan is set in motion, I will advise. God Bless you all.
Don't Forget About Us
I would first like to apologize for not writing sooner. My home computer broke and the one computer I can borrow has a broken "u" key. If I am patient and daring enough, I will use that computer (I have to hit "CTRL V" to get the letter "u". It's time consuming as you can imagine)
I would just like to, once again, thank everyone for all your comments, prayers and words of strength and love. My children and I care for my husband out of love and we do it because it just comes naturally to us. We never thought we were doing anything amazing or out of the ordinary. When I married my husband, I heard the vows, "for better or for worse, in sickness and in health". I KNOW Mike would have been there for me. We married out of love, and it's the strength of that love that enables me to do what I do.
Scentedcottage, Wendy, Liz, Stephanie, Susan, Suset, Wendy, Annie, Laura and Karen C - Thank you for taking the time out of your busy day to write me words of encouragement. JoAnn - I DID work in Friendly's NHP for 9 years, so I'm, sure we must know each other. In fact Friendly's had a reunion this summer. It's a small world. There were NUMEROUS anonymous messages, so I can't thank you all personally, but please know that I TRULY appreciate what you have written.
I pray for a cure for this disease and all I ask is that you remember us and do your best to help keep the subject open. There are NO SURVIVORS of Alzheimer's Disease, no one to march on Washington. Alzheimer patients do not have the voices to speak out. Please help us speak up for them.
It's great to hear from you all today, but please don't forget about us (Alzheimer patients and families) tomorrow.
Thank you and God Bless.
I would just like to, once again, thank everyone for all your comments, prayers and words of strength and love. My children and I care for my husband out of love and we do it because it just comes naturally to us. We never thought we were doing anything amazing or out of the ordinary. When I married my husband, I heard the vows, "for better or for worse, in sickness and in health". I KNOW Mike would have been there for me. We married out of love, and it's the strength of that love that enables me to do what I do.
Scentedcottage, Wendy, Liz, Stephanie, Susan, Suset, Wendy, Annie, Laura and Karen C - Thank you for taking the time out of your busy day to write me words of encouragement. JoAnn - I DID work in Friendly's NHP for 9 years, so I'm, sure we must know each other. In fact Friendly's had a reunion this summer. It's a small world. There were NUMEROUS anonymous messages, so I can't thank you all personally, but please know that I TRULY appreciate what you have written.
I pray for a cure for this disease and all I ask is that you remember us and do your best to help keep the subject open. There are NO SURVIVORS of Alzheimer's Disease, no one to march on Washington. Alzheimer patients do not have the voices to speak out. Please help us speak up for them.
It's great to hear from you all today, but please don't forget about us (Alzheimer patients and families) tomorrow.
Thank you and God Bless.
Sunday, October 11, 2009
THANK YOU EVERYONE
Our story ran today in Newsday and I have already been contacted by friends as well as strangers. The outpouring of kindness, love and prayers is amazing. This kindenss renews my faith in mankind.
I don't have everyone's information personally so for those I don't have, I wanted to thank you all for your offers of help. You took the time out of your busy day to contact me, so that alone is amazing. Thank you all and God Bless.
I don't have everyone's information personally so for those I don't have, I wanted to thank you all for your offers of help. You took the time out of your busy day to contact me, so that alone is amazing. Thank you all and God Bless.
Friday, October 9, 2009
Newsday Story
To my blogger family
- our story is in our newspaper starting today. Got to: www.Newsday.com and click on "Alzheimer's on LI". They have pictures of each family they have been following. For ours, they have our story, an AMAZING video and still pictures. They also have excerpts from Mike's Journal, letters he had written to me and Courtney's essay for the AFA Teens scholarship. They also include a daily timeline and a timeline addressing Mike's illness.
It's been a long 2 years, but I fell the outcome is amazing. I hope it raises the awareness this disease REALLY needs.
- our story is in our newspaper starting today. Got to: www.Newsday.com and click on "Alzheimer's on LI". They have pictures of each family they have been following. For ours, they have our story, an AMAZING video and still pictures. They also have excerpts from Mike's Journal, letters he had written to me and Courtney's essay for the AFA Teens scholarship. They also include a daily timeline and a timeline addressing Mike's illness.
It's been a long 2 years, but I fell the outcome is amazing. I hope it raises the awareness this disease REALLY needs.
Tuesday, October 6, 2009
:(
I've been up since 3:30 this morning. Mike started moaning around that time. I checked his temperature and he was OK. By 8:30 a.m. his temp was 101.4. I put a call out to hospice and they ordered Cipro for him. This past weekend he had been sneezing and coughing ALOT, so I thought it may be his sinus's. I was told that this antibiotic would work for the sinus's as well as a UTI (just in case).
Tonight Brandon is being inducted into the National Honor Society and now I'm not sure I will be able to go. If Mike is not doing well, I cannot leave him with my brother. This would not be the first, nor the last, function I would have to miss. :(
Courtney is wearing me out!!!! No matter what I do or what I say, it's never right. I had been warned about this stage, but I had been lucky until now. I am just worn out and I have no idea wha to do. It seems the only time she is happy is when she is in NYC. She HATES Hofstra and she HATES the work/classes. Everything I do or say, to or with her, is met with anger and disrespect. I'm not used to this and I'm not sure how much more I can take.
Tonight Brandon is being inducted into the National Honor Society and now I'm not sure I will be able to go. If Mike is not doing well, I cannot leave him with my brother. This would not be the first, nor the last, function I would have to miss. :(
Courtney is wearing me out!!!! No matter what I do or what I say, it's never right. I had been warned about this stage, but I had been lucky until now. I am just worn out and I have no idea wha to do. It seems the only time she is happy is when she is in NYC. She HATES Hofstra and she HATES the work/classes. Everything I do or say, to or with her, is met with anger and disrespect. I'm not used to this and I'm not sure how much more I can take.
Friday, October 2, 2009
Walking the Dog
Since Courtney has been away at school, I have taken to walking Gizmo (our dog) each morning before work. It gives me exercise and gives me 1/2 hour to myself. As I was walking this morning, I passed the local church where Brandon had his Cub Scout/Boy Scout meetings. In one quick flash a flood of emotions took over.
Brandon had just started Cub Scouts when Mike got sick. Our close friends involved with the Troop knew the situation and they were supportive. The other families that we knew only casually, didn't know. I struggled constantly about how they perceived Mike and his childish, often "different" behavior. I was never one to go up to someone and introduce ourselves and explain Mike's illness. I remembered those days when I imagined all eyes on me because Mike was acting more like one of the Boy Scouts than he was one of the fathers. Still, I continued to bring Mike to the meetings and ceremonies, for as long as I could.
At Pinewood Derby time, I would help Brandon design and build his cars. Mike would also get involved, but at that time, he would become very frustrated and it often didn't pay to let him help, because his frustration was not worth it. I always tried to avoid as much tension as possible for Mike and the kids.
As Brandon got older and the Boy Scouts went camping, I accompanied him on those trips. Of course, I would always zero in on the fact that I was there with Brandon, when all the other boys had their dads with them. I didn't want Brandon to miss out on the experience.... so I went camping. Our very first expereience was one we will never forget. Brandon and I went out on a Friday, even though the rest of the troop was going to be out there on Saturday. This was our VERY first camping trip. We had to borrow a tent, sleeping bags, lanterns . I had no clue as to what I was doing. The first night at camp, I had to go to another troop and ask one of the other leaders how to light the lantern. That night it started to rain - storm actually. The thunder and lightning were horrible and the only thing between me and Brandon and the storm, was the thin nylon of our tent. During the night, we heard a crack and a bang. The next morning we awoke to find that a tree had fallen right next to us. The rest of Brandon's troop arrived later that morning, but the rain continued the entire day. It was so bad that there was not one dry part on any of us. Saturday afternoon, the boys were visited by the Head Scoutmaster for Long Island and congratulated each and every boy who stuck it out. By mid-day, most of the other campers had packed it in and headed home, but we stuck it out. That night the boys had a great time around a huge campfire and I never laughed so hard, even if I was the only mom there.
As Brandon got older, the camping trips were becomming more frequent. He appraoched me one day and said that he no longer wanted to be in the Boy Scouts. He had just gotten back from a camping trip by himself, when he said, "mom, everywhere I looked, all the other boys had their dad with them and I didn't". This hurt me to the core and I knew that no matter what I did for him, he would never have his dad to share this experience with. He quit Boy Scouts shortly thereafter.
All these memories and more came flooding back to me, by the simpe, act of walking past the church where Brandon's meetings were held. At that time, I had no idea how long and difficult this journey was going to be. I think that's what upset me most. Thinking about where we were back then, and where we are now, and all that we missed in between.
Brandon had just started Cub Scouts when Mike got sick. Our close friends involved with the Troop knew the situation and they were supportive. The other families that we knew only casually, didn't know. I struggled constantly about how they perceived Mike and his childish, often "different" behavior. I was never one to go up to someone and introduce ourselves and explain Mike's illness. I remembered those days when I imagined all eyes on me because Mike was acting more like one of the Boy Scouts than he was one of the fathers. Still, I continued to bring Mike to the meetings and ceremonies, for as long as I could.
At Pinewood Derby time, I would help Brandon design and build his cars. Mike would also get involved, but at that time, he would become very frustrated and it often didn't pay to let him help, because his frustration was not worth it. I always tried to avoid as much tension as possible for Mike and the kids.
As Brandon got older and the Boy Scouts went camping, I accompanied him on those trips. Of course, I would always zero in on the fact that I was there with Brandon, when all the other boys had their dads with them. I didn't want Brandon to miss out on the experience.... so I went camping. Our very first expereience was one we will never forget. Brandon and I went out on a Friday, even though the rest of the troop was going to be out there on Saturday. This was our VERY first camping trip. We had to borrow a tent, sleeping bags, lanterns . I had no clue as to what I was doing. The first night at camp, I had to go to another troop and ask one of the other leaders how to light the lantern. That night it started to rain - storm actually. The thunder and lightning were horrible and the only thing between me and Brandon and the storm, was the thin nylon of our tent. During the night, we heard a crack and a bang. The next morning we awoke to find that a tree had fallen right next to us. The rest of Brandon's troop arrived later that morning, but the rain continued the entire day. It was so bad that there was not one dry part on any of us. Saturday afternoon, the boys were visited by the Head Scoutmaster for Long Island and congratulated each and every boy who stuck it out. By mid-day, most of the other campers had packed it in and headed home, but we stuck it out. That night the boys had a great time around a huge campfire and I never laughed so hard, even if I was the only mom there.
As Brandon got older, the camping trips were becomming more frequent. He appraoched me one day and said that he no longer wanted to be in the Boy Scouts. He had just gotten back from a camping trip by himself, when he said, "mom, everywhere I looked, all the other boys had their dad with them and I didn't". This hurt me to the core and I knew that no matter what I did for him, he would never have his dad to share this experience with. He quit Boy Scouts shortly thereafter.
All these memories and more came flooding back to me, by the simpe, act of walking past the church where Brandon's meetings were held. At that time, I had no idea how long and difficult this journey was going to be. I think that's what upset me most. Thinking about where we were back then, and where we are now, and all that we missed in between.
Thursday, October 1, 2009
Burdens
I pray each day that God lifts a few of my burdens - so I can stay strong in faith to fight my daily battles.
Mike has NEVER been, nor will HE EVER BE a burden. Unfortunately we cannot get through life without daily struggles. These struggles have become tremendous burdens for me and I awake with them on my mind each and every day.
For the last few months to a year, it feels as though my burdens have multiplied. They are weighing me down to a point that I feel drained and overwhelmed. I pray every day that God lifts a few of these burdens so that I can channel my strengths for other, more important issues.
Mike has NEVER been, nor will HE EVER BE a burden. Unfortunately we cannot get through life without daily struggles. These struggles have become tremendous burdens for me and I awake with them on my mind each and every day.
For the last few months to a year, it feels as though my burdens have multiplied. They are weighing me down to a point that I feel drained and overwhelmed. I pray every day that God lifts a few of these burdens so that I can channel my strengths for other, more important issues.
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