Last night I finally got around to watching a Lifetime movie I had taped months ago called Forget Me Never starring Mia Farrow and Martin Sheen. What caught my eye to begin with was the fact that this movie was made in 1999 and it was about Early Onset Alzheimer's Disease. How great was it that movies were made almost 10 years ago addressing the issues we are all fighting for so strongly today.
The movie appeared to be based on a true atory about a woman in her 50's diagnosed with EOAD and the struggles she had, especially with her husband, in accepting the disease and all that it would bring. She was desperate to find others like herself and eventually did become very good friends with another man. Both these people had very good careers who were forced to quit because of the problems the disease was causing. The man's wife had divorced him after he was diagnosed and he went to live with his sister. The two characters formed a close friendship, which would later dissolve when the man's sister had to place him in a "facility" because she could no longer handle his care.
What was most poignant, was that the woman Mia Farrow portryed just wanted to talk to her family about what was happening to her and who was going to take care of her when she was no longer able to do so herself. She had a hard time breaking through the denial. Then I thought....Mike & I never really talked about the ravages of the disease and what it would do. We had quite a few conversations within the days after diagnosis, but we never really spoke about it again. After seeing this movie, I wonder if Mike NEEDED to talk about it, like this woman did. I began to feel guilty if that were in fact the case. Had Mike been scared, lonely and isolated and felt he couldn't talk to me? Did he want to talk? I know Mike's family was not very communicative (is that a word?). Mike kept alot to himself through the years, but after seeing this movie, I wonder if he wanted to talk about what would eventually happen to him. Maybe he knew that he would never have to worry about who was going to take care of him. I do remember him saying that it would be OK with him if I ever had to put him in a nursing home - he wanted to know that I should not feel bad if I couldn't care for him at home. I told him that NO MATTER WHAT, I would be there for him. I hope that gave him the peace he needed.
Courtney watched portions of the movie with me and vowed that the movie she makes will be MUCH BETTER. Yes, Courtney wants to go to college to become a director so she can make a movie about Mike the right way. She is deteremined and there is no doubt in my mind that she will make it happen. She wants the REAL story about EOAD to be told, through the eyes of a child that grew up knowing just this.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Thursday, October 30, 2008
Tuesday, October 28, 2008
Our Anniversary
20 years ago today..........................Mike and I danced our first dance to Follow You, Follow Me by Genesis "I will follow you, will you follow me, all the days and nights that were meant to be, I will stay with you, will you stay with me, just one single tear in each passing year there will be............." How I wish that we DID only have "one single tear", but that was not the way it was meant to be.
I named our blog after this song, because it DOES mean so much to me. Much like most typical men, Mike really didn't care much about the planning of our wedding. Don't get me wrong, he was very much a part of it, but he trusted me and agreed with most of my choices. There was only one thing that he REALLY voiced an opinion about, and that was this song. It meant something to him and he wanted our first dance as husband and wife be to Follow You, Follow Me. In fact, I had never really heard the song and when he played it for me - I was pleasantly surprised (Mike was also a Led Zeppelin fan, so I had no idea what to expect). I had wanted another song, so to compromise, we had both songs. We had called to the dance floor four other couples that were married the same year, and we danced with them to the song I wanted.
I don't hear "our song" on the radio very much, but when I do, I am taken back to that day and the happiness and promise we shared. This is not how I would have pictured our lives to be 20 years later, but I am happy that I've had a chance to spend it with Mike.
In sickness and in health, until death do us part..............................
Happy Anniversary Mike - I Love you.
I named our blog after this song, because it DOES mean so much to me. Much like most typical men, Mike really didn't care much about the planning of our wedding. Don't get me wrong, he was very much a part of it, but he trusted me and agreed with most of my choices. There was only one thing that he REALLY voiced an opinion about, and that was this song. It meant something to him and he wanted our first dance as husband and wife be to Follow You, Follow Me. In fact, I had never really heard the song and when he played it for me - I was pleasantly surprised (Mike was also a Led Zeppelin fan, so I had no idea what to expect). I had wanted another song, so to compromise, we had both songs. We had called to the dance floor four other couples that were married the same year, and we danced with them to the song I wanted.
I don't hear "our song" on the radio very much, but when I do, I am taken back to that day and the happiness and promise we shared. This is not how I would have pictured our lives to be 20 years later, but I am happy that I've had a chance to spend it with Mike.
In sickness and in health, until death do us part..............................
Happy Anniversary Mike - I Love you.
Friday, October 24, 2008
Human Touch
I often talk about Mike's "shakes" at night. I was told by his neurologist the last time he was in the hospital that they were caused by the disease. Basically, the area of the brain that controls those functions were being taken over by the AD and Mike had no control over them. There are times when he may not have them for quite some time. Then there are days when he has quite a few. They will happened anytime throughout the day and/or night.
At night when he has them, I hold him and rub his arm, cheek, shoulder, whatever seems to calm him down. I don't even know if what I do "calms him" or if it's just the shaking that subsdues on it's own. Whatever it may be, I do what I do so that Mike knows there's someone with him. While I do this at night, I often think about the other Alzheimer patients out there that don't have someone to hold them. Quite often, this disease makes it impossible for a family to keep their loved ones at home. I think about those people and wonder how much, if any, the lack of human touch has on the progression of the disease.
When Mike's doctors see him, they cannot believe how good he looks for being 7 1/2 years into this disease. Remember, for Early Onset Alzheimer's, the "average" life expectancy is 5-8 years. We all take great pride in those comments, because we know how much time we put into caring for Mike. Sure, there are those out there who will say that we should devote more time to ourselves, and me to the children - but I look at it as what I was taught through my Christian faith. God sacrificed so much for us - isn't life about sacrifice? What we have sacrificed as a family, has allowed Mike to live comfortably, peacefully and lovingly AT HOME. We have been blessed beyond measure for this and I will forever be indebted to everyone who has helped us along the way. Keeping Mike at home has been no small feat, but because of all the support we get, we have been able to continue.
The human touch is so important for all of us to feel connected and loved, and I am thrilled that we have been able connect with Mike every single day through touch. Please pray for all those who may not be as fortunate.
At night when he has them, I hold him and rub his arm, cheek, shoulder, whatever seems to calm him down. I don't even know if what I do "calms him" or if it's just the shaking that subsdues on it's own. Whatever it may be, I do what I do so that Mike knows there's someone with him. While I do this at night, I often think about the other Alzheimer patients out there that don't have someone to hold them. Quite often, this disease makes it impossible for a family to keep their loved ones at home. I think about those people and wonder how much, if any, the lack of human touch has on the progression of the disease.
When Mike's doctors see him, they cannot believe how good he looks for being 7 1/2 years into this disease. Remember, for Early Onset Alzheimer's, the "average" life expectancy is 5-8 years. We all take great pride in those comments, because we know how much time we put into caring for Mike. Sure, there are those out there who will say that we should devote more time to ourselves, and me to the children - but I look at it as what I was taught through my Christian faith. God sacrificed so much for us - isn't life about sacrifice? What we have sacrificed as a family, has allowed Mike to live comfortably, peacefully and lovingly AT HOME. We have been blessed beyond measure for this and I will forever be indebted to everyone who has helped us along the way. Keeping Mike at home has been no small feat, but because of all the support we get, we have been able to continue.
The human touch is so important for all of us to feel connected and loved, and I am thrilled that we have been able connect with Mike every single day through touch. Please pray for all those who may not be as fortunate.
Wednesday, October 22, 2008
Roller Coaster Ride
There has been so much on my mind lately and so much to reflect upon.
Much has to do with Courtney's senior year and graduation in June. I remember when Mike was first diagnosed, I feared that he would not be with us when Courtney graduated from High School. That day, I thought about all that he would miss and what graduation would be like for both Courtney and Brandon without Mike there with us. Now, graduation is a mere 8 months away. Only God knows whether Mike will be with us then, but I am very thankful for all the years we've had together. When Mike's mom was diagnosed, things moved so quickly. She went into a downward spiral right away and within 5 months, she was unable to walk, talk and care for herself. We had 3-4 good years with Mike before he got really bad.
I have been searching through pictures to use for Courtney's yearbook ad and it is so bittersweet. I am SO thankful that we have those pictures, but looking back at them and seeing how much Mike had changed over such a short period of time, is sad. I had never before paid attention to the sadness in his face. Of course, there were pictures of him smiling and laughing with us, and those will forever have a special place in my heart.
This truly has been one big roller coaster ride. There have been ups and downs and turns that we couldn't anticipate. I often find myself hanging on (to hope) with all my might, so afraid that I will drop. I cling to my faith on a daily basis, knowing that that has been my CONSTANT support and strength. There were days when I just didn't want to get on the ride, but I had no choice. There were, and still are, days when I feel like this is all one big nightmare and I will wake up and be so grateful.
I can't believe it's been 7 1/2 years since Mike was diagnosed. This disease has changed us in so many ways. It has taken so much away, and at the same time, has given us more than we ever expected - both good and bad. I dont' know what tomorrow or the next day will bring. I will continue to cling onto the ride, not knowing whether I will be going up or down. I can't anticipate the turns, but I will always have my faith to keep me safe and secure.
Much has to do with Courtney's senior year and graduation in June. I remember when Mike was first diagnosed, I feared that he would not be with us when Courtney graduated from High School. That day, I thought about all that he would miss and what graduation would be like for both Courtney and Brandon without Mike there with us. Now, graduation is a mere 8 months away. Only God knows whether Mike will be with us then, but I am very thankful for all the years we've had together. When Mike's mom was diagnosed, things moved so quickly. She went into a downward spiral right away and within 5 months, she was unable to walk, talk and care for herself. We had 3-4 good years with Mike before he got really bad.
I have been searching through pictures to use for Courtney's yearbook ad and it is so bittersweet. I am SO thankful that we have those pictures, but looking back at them and seeing how much Mike had changed over such a short period of time, is sad. I had never before paid attention to the sadness in his face. Of course, there were pictures of him smiling and laughing with us, and those will forever have a special place in my heart.
This truly has been one big roller coaster ride. There have been ups and downs and turns that we couldn't anticipate. I often find myself hanging on (to hope) with all my might, so afraid that I will drop. I cling to my faith on a daily basis, knowing that that has been my CONSTANT support and strength. There were days when I just didn't want to get on the ride, but I had no choice. There were, and still are, days when I feel like this is all one big nightmare and I will wake up and be so grateful.
I can't believe it's been 7 1/2 years since Mike was diagnosed. This disease has changed us in so many ways. It has taken so much away, and at the same time, has given us more than we ever expected - both good and bad. I dont' know what tomorrow or the next day will bring. I will continue to cling onto the ride, not knowing whether I will be going up or down. I can't anticipate the turns, but I will always have my faith to keep me safe and secure.
Tuesday, October 21, 2008
Henley Update
As of yet, nothing has been done about Mike's leg. Christa mentioned that she felt Medicare would cover the cost of an at home doplar test to find out whether Mike had a blood clot. The next day I got a call from her supervisor, indicating that Medicare would NOT cover the cost. I had three choices: do nothing, take Mike to the ER for the test or pay the out of pocket expense (approx. $250.00). I decided to take a wait and see approach. Beside "possibly" putting Mike on a blood thinner, there's nothing different that they would do, since he already has a filter in his artery. I've been watching his leg VERY closely and for the last 3-4 days, it hasn't been swollen. He DOES have a few "rashes" on his leg in various places which I have also been watching. I get concerned about that because of the MRSA he has.
I had a L-O-N-G talk with the hospice social worker yesterday regarding our "nightmare" a few weeks back and she assured me that she would be speaking with the nursing supervisor to correct the situation. She seemed shocked when I told her what had happened, how long it took for someone to come and check Mike and the lack of professionalism of the nurse that DID finally come. At least I felt comfortable with the fact that it wasn't just me.
Courtney submitted (FINALLY) her two applications for Early Decision - to Fordham and Hofstra. They both have great film/communication/visual arts programs. Her first choice is still Fordham, but thankfully she is now open to other schools if that doesn't work out. I'm sure the disappointment will be there, but at least she will know she can get the same experience/education in another college.
Brandon also continues to amaze me. He got his progress report and he got all A's with the exception of English (B). No surprise there - he HATES English, especially this year with the grammar. He got his working papers the other day and wants to apply for a job at McDonald's where his friends work. I think it would be good for him, but we'll see if he actually does it. He seems to like the idea of making money so he can buy his own "things".
I am hanging in there, taking each day one at a time. Some days are better, some not so good.
I had a L-O-N-G talk with the hospice social worker yesterday regarding our "nightmare" a few weeks back and she assured me that she would be speaking with the nursing supervisor to correct the situation. She seemed shocked when I told her what had happened, how long it took for someone to come and check Mike and the lack of professionalism of the nurse that DID finally come. At least I felt comfortable with the fact that it wasn't just me.
Courtney submitted (FINALLY) her two applications for Early Decision - to Fordham and Hofstra. They both have great film/communication/visual arts programs. Her first choice is still Fordham, but thankfully she is now open to other schools if that doesn't work out. I'm sure the disappointment will be there, but at least she will know she can get the same experience/education in another college.
Brandon also continues to amaze me. He got his progress report and he got all A's with the exception of English (B). No surprise there - he HATES English, especially this year with the grammar. He got his working papers the other day and wants to apply for a job at McDonald's where his friends work. I think it would be good for him, but we'll see if he actually does it. He seems to like the idea of making money so he can buy his own "things".
I am hanging in there, taking each day one at a time. Some days are better, some not so good.
Thursday, October 16, 2008
Possible Clot
Yesterday's debate did NOT create any transportation issues with the kids and their school day yesterday. After a day of concern and worry about how long it would take for them to get home, everything went fine. That was even with the rally held at Eisenhower Park which is right on the way home (something that I didn't even know about).
I called Mike's nurse yesterday because his calf and foot seemed to be swollen. My concern of course is a blood clot. She came over and confirmed it was swollen and spoke to the hospice doctor and Mike's doctor and ordered a doplar test to be done right here at home. Even though Mike had the "filter" put in after the pulmonary embolism situation, blood clots are still a concern. Ironically, this is happening on the same leg where we noticed a very odd red ring last week. It was more like an oval shape the size of his calf. I was concerned then, but then it went away and I kind of forgot about it. I mentioned it to Christa (his hospice nurse) and she said she would mention it to the doctor to see what they think.
I called Mike's nurse yesterday because his calf and foot seemed to be swollen. My concern of course is a blood clot. She came over and confirmed it was swollen and spoke to the hospice doctor and Mike's doctor and ordered a doplar test to be done right here at home. Even though Mike had the "filter" put in after the pulmonary embolism situation, blood clots are still a concern. Ironically, this is happening on the same leg where we noticed a very odd red ring last week. It was more like an oval shape the size of his calf. I was concerned then, but then it went away and I kind of forgot about it. I mentioned it to Christa (his hospice nurse) and she said she would mention it to the doctor to see what they think.
Wednesday, October 15, 2008
Debate Chaos
Today's Presidential Debate is taking place at Hofstra University. Courtney and Brandon's High School is right down the block from there. All surrounding schools and even some catholic High Schools that are NO WHERE near the debate sight are all closed today, but Kellenberg (their high school) remains open. All roads around the school, in which the buses use to take them to school, will be closed. The question is, when will Courtney and Brandon get home tonight because of re-routing and why are they in school in the first place???? I can't quite figure this one out and they are understandably concerned about how they will get home. The main road to their school is Hempstead Turnpike, the very same road that Hofstra is on. Someone hadn't thought this out very well.
Beside this confusion, everything else is status quo. I forgot to mention that this past weekend, we took Mike out for a walk. I can't remember the last time he was out, but it was such a beautiful day, we couldn't resist. He was actually looking around and staring up at the sky the whole time. As we pushed him around, he had a smile on his face. It was such a great day, in that sense. We can all learn alot from Mike. What so many of us take for granted, are the simplest of things....the sun on our face as we walk outside. Appreciate life's little pleasures and think of all those that can't.
Beside this confusion, everything else is status quo. I forgot to mention that this past weekend, we took Mike out for a walk. I can't remember the last time he was out, but it was such a beautiful day, we couldn't resist. He was actually looking around and staring up at the sky the whole time. As we pushed him around, he had a smile on his face. It was such a great day, in that sense. We can all learn alot from Mike. What so many of us take for granted, are the simplest of things....the sun on our face as we walk outside. Appreciate life's little pleasures and think of all those that can't.
Tuesday, October 14, 2008
No End in Sight
It's been a while since I've written. Things have been hectic, just never enough hours in the day.
Mike is still having "sleeping issues" which keep me awake. He will shake sometimes, cough , sweat etc., and whenever these things happen, I will wake up to take care of him. There's also the issue of changing him and turning him. I'm still very tired.
I went with Courtney to see Fordham once again (last week) and yesterday we visited Hoftra University (my alma mater). It was interesting, especially since the last Presidential Debate will be held there tomorrow. The place was buzzing with activity and secret service. Courtney is being very mature in her realization that she may not be able to go to her dream college (Fordham). This will not be because of her academics, but in light of our nations' financial situation, we're very concerned about getting student loans. I'm sure she will be elligible for scholarships, but the balance would be covered by student loans and her teachers are telling them they're going to be difficult to get. Therefore, she's looking at more local schools where she may get even more money. She's applied for "Early Action", so she will know by Christmas whether she has been accepted.
I have continued to be disappointed regarding the Hospice Mike is enrolled in. I have always heard such good things about Hospice, but I have not experienced any of that yet. It always seems like I get voice mail and there never seems to be enough people to "cover" if our regular nurse is out. I know I have to so something about this, but I haven't had the time. I'm also having issues with Mike's Medicaid. Instead of his "overage" being $369.00/month, they are telling me that it will now be $1,100.00/month. I couldn't afford that on top of paying privately for mine and the kids insurance. I don't understand why all of a sudden this has changed after all these years (4 to be exact). I was told that Mike's papers were originally filled out wrong. So now I have to go through all the paperwork from when we filled out the application with our Elder Law attorney to see what happened and if there's no obvious answer, then I will need to reach out to that attorney for assistance.
There are MAJOR issues going on in my life and I don't have the time to deal with them. I am once again in the overwhelmed stage where I don't see an end in sight.
Mike is still having "sleeping issues" which keep me awake. He will shake sometimes, cough , sweat etc., and whenever these things happen, I will wake up to take care of him. There's also the issue of changing him and turning him. I'm still very tired.
I went with Courtney to see Fordham once again (last week) and yesterday we visited Hoftra University (my alma mater). It was interesting, especially since the last Presidential Debate will be held there tomorrow. The place was buzzing with activity and secret service. Courtney is being very mature in her realization that she may not be able to go to her dream college (Fordham). This will not be because of her academics, but in light of our nations' financial situation, we're very concerned about getting student loans. I'm sure she will be elligible for scholarships, but the balance would be covered by student loans and her teachers are telling them they're going to be difficult to get. Therefore, she's looking at more local schools where she may get even more money. She's applied for "Early Action", so she will know by Christmas whether she has been accepted.
I have continued to be disappointed regarding the Hospice Mike is enrolled in. I have always heard such good things about Hospice, but I have not experienced any of that yet. It always seems like I get voice mail and there never seems to be enough people to "cover" if our regular nurse is out. I know I have to so something about this, but I haven't had the time. I'm also having issues with Mike's Medicaid. Instead of his "overage" being $369.00/month, they are telling me that it will now be $1,100.00/month. I couldn't afford that on top of paying privately for mine and the kids insurance. I don't understand why all of a sudden this has changed after all these years (4 to be exact). I was told that Mike's papers were originally filled out wrong. So now I have to go through all the paperwork from when we filled out the application with our Elder Law attorney to see what happened and if there's no obvious answer, then I will need to reach out to that attorney for assistance.
There are MAJOR issues going on in my life and I don't have the time to deal with them. I am once again in the overwhelmed stage where I don't see an end in sight.
Tuesday, October 7, 2008
Forgive Me While I Sleep
The last few weeks have not been good sleeping weeks.
The first week, Mike was sick and I was up with him a few nights while he recovered.
The second week, I didn't feel well and I slept out on the couch for fear of giving Mike what I had.
This week so far, Mike is having restless sleep, so therefore, so am I.
There have been times when I have fallen asleep in my car at lucnh time - the ONLY time I have to myself during the course of my day. On the weekends, you will often find me taking an "afternoon nap" just to get me through the day. I never had to do this, but I guess all the lost sleep is beginning to take it's toll.
This reminds me of our life when we brought Courtney and Brandon home from the hospital as newborns, but this time, I'm not caring for a child, I'm taking care of my husband and I'm 17 years older than I was then. I'm beginning to feel the side affects of my lack of sleep and my "old age".
Forgive me, if you happen to see me and I fall asleep...............
The first week, Mike was sick and I was up with him a few nights while he recovered.
The second week, I didn't feel well and I slept out on the couch for fear of giving Mike what I had.
This week so far, Mike is having restless sleep, so therefore, so am I.
There have been times when I have fallen asleep in my car at lucnh time - the ONLY time I have to myself during the course of my day. On the weekends, you will often find me taking an "afternoon nap" just to get me through the day. I never had to do this, but I guess all the lost sleep is beginning to take it's toll.
This reminds me of our life when we brought Courtney and Brandon home from the hospital as newborns, but this time, I'm not caring for a child, I'm taking care of my husband and I'm 17 years older than I was then. I'm beginning to feel the side affects of my lack of sleep and my "old age".
Forgive me, if you happen to see me and I fall asleep...............
Wednesday, October 1, 2008
Washer/Dryer
One of the benefits of working for a Jewish attorney is having off on their holidays. Happy New Year! I had off yesterday and today. I wish I could say that I made good use of the time off, but unfortunately, I am sick. I started feeling bad over the weekend, and sure enough, Monday night, my sinus's started giving me problems. I tried to rest yesterday,but Mike's foot doctor came (his toe is STILL infected) and we had our new washer/dryer delivered.......YEAH!!!!!!!! I was exhausted, but there was no time for rest. At the end of the day, I even had to pick Courtney and Brandon up from school.
Because I haven't been feeling well, I haven't been sleeping in with Mike. I'm not sure what I have and I'm afraid it may be contagious, so I've been sleeping out on the couch. I get up a few times a night to check on Mike, but I'm not in there with him. Guess, what....I miss him. It feels like I'm not spending any time with him by not sleeping next to him. I keep telling him why I'm not in with him and I hope he understands.
On happier note, our washer and dryer are GREAT!! I am SO blessed to have been able to get them - God works in mysterious ways. We do have to have a plumber come out today though because the water hook-up isn't quite high enough for the new washing machine. Because they are on the "pedestals", the line is about 10 inches too short. We had the delivery people hook it up for now (without the pedestal) and then after the plumber extends it, we will put it up. It was quite funny though, we looked like a bunch of idiots staring at them in amazement. It's just that it's been so long since we had gotten a new appliance and the newer models have so many more options. It's always the small things that make us happy.
Because I haven't been feeling well, I haven't been sleeping in with Mike. I'm not sure what I have and I'm afraid it may be contagious, so I've been sleeping out on the couch. I get up a few times a night to check on Mike, but I'm not in there with him. Guess, what....I miss him. It feels like I'm not spending any time with him by not sleeping next to him. I keep telling him why I'm not in with him and I hope he understands.
On happier note, our washer and dryer are GREAT!! I am SO blessed to have been able to get them - God works in mysterious ways. We do have to have a plumber come out today though because the water hook-up isn't quite high enough for the new washing machine. Because they are on the "pedestals", the line is about 10 inches too short. We had the delivery people hook it up for now (without the pedestal) and then after the plumber extends it, we will put it up. It was quite funny though, we looked like a bunch of idiots staring at them in amazement. It's just that it's been so long since we had gotten a new appliance and the newer models have so many more options. It's always the small things that make us happy.
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