Today, heaven gained a new angel. Mike passed away this afternoon. He was the strongest, bravest man I ever knew ( beside my dad). Even though we will miss him terribly, we are at peace knowing he is rid of his torn and broken body. His spirit is soaring and he's finally back with his mom, dad and brother.
We love you forever and ever....our Energizer Bunny!
Karen, Courtney and Brandon
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Tuesday, February 28, 2012
Friday, February 24, 2012
The Unsung Heroes
As some of you may know, I have decided to take that step into attempting to write a book. While there are quite a few books about Alzheimer's out there, I don't know of any that are about someone being diagnosed as young as 36, nor a family who had decided to care for their loved one at home until the end. The combination of those two unique issues helped me decide that our story should be told.
For the last few months, I have been collecting my thoughts on a tape recorder. I sometimes find my self rambling about one issue or another and it's only then do I realize all that we have been through as a family. Some painful memories have taken up residence in the recesses of my mind, which I can only assume is my mind's way of coping. Thinking about diagnosis, hospitalizations, set-backs and fears made me realize very clearly there are unsung heroes that don't get the full attention they deserve.
They are.....COURTNEY and BRANDON.
Do you remember what you were doing when you were 7 & 9 years old? Our children were being told that their dad "had a disease in his brain that may cause him to do funny things. He may forget things, or act confused, but he will always be their dad". They were being asked to understand a disease so many adults don't understand. They were asked to help out when most adults ran away. Mike functioned pretty well until 2003/2004 - when Courtney and Brandon were 9 and 11. What were you doing at that age? Going to friends houses, parties, being a kid? Our children were asked to help put their dad's shirt on, lead him to the bathroom, cut up his food, tie his shoes - all the things that a dad is supposed to do for his children. I will not say that Courtney and Brandon missed out on everything, but I WILL say they missed out on alot.
At this time Mike was beginning his anger/agitation stage. I remember the four of us in the supermarket. Mike began to get agitated and confused with all the bright lights, music, people talking etc. With a cart full of groceries, Mike started yelling and becoming combative. We got alot of stares from strangers. Instead of our children retreating, they helped me control the situation. Courtney took Mike outside to the car to keep him calm, while Brandon helped me pay and bag our groceries. It was after that outing that I decided Mike was no longer able to go with us anymore, It wasn't worth him getting overwhelmed, or the kids being embarrassed. Strangely enough, neither one of them was embarrassed, but Mike's days of going with us food shopping were over.
This leads me to to next obstacle. Because Mike couldn't go many places, and someone had to be with him most of the time, Courtney and Brandon couldn't go many places...unless of course a kind friend offered to drive them somewhere. They never wanted to ask their friends for rides, they didn't want to feel like a burden, so instead, they missed out on alot. Something as simple as meeting with friends at another friend's house, was impossible unless they got a ride. Going to the movies, parties, it was all the same.
As the kids got older, and Mike's disease progressed, their responsibilities with their dad changed. Now they were feeding him, bathing him, shaving him and help with changing his diapers. Is that something you did when you were 12 and 14? Did you spend countless hours after school in a hospital room wondering if your dad would survive another medical issue? Were you more often than not, dismissed by professionals who thought you didn't know what was going on, just because you were too young? Would you be able to keep up good grades (mostly A's and some B's) while your life was turning upside down? Courtney and Brandon did. They excelled in High School despite all that was going on at home. When I think about the nonsense that most teenagers complain about in their life, my heart breaks. My children have gone to hell and back and very rarely do they ever complain. They are NOT PERFECT, they fight with each other and that does cause some added stress on me, but I am glad they can still act "normal" in the face of all the "craziness".
When you were a teenager, were you aware of mortality? I remember back to my youth and specifically being asked to write a paper in English senior year, "If you had six months to live, would you want to be told"? It was a lesson to make us think about life and the pros and cons of knowing (or not knowing) when we may die. That was probably the first and last time I thought about death. Courtney and Brandon have been dealing with their dad's terminal illness for almost 11 years! They lived through the horror of Mike being given Last Rites and going home from the hospital that night thinking they were never going to see their dad again. Most kids that age are lucky enough to not have to think about these things. My children do.
Courtney and Brandon are my unsung heroes! Their childhood was destroyed by Alzheimer's Disease. The only clear memories they have of Mike are from early in his diagnosis. He never made it to their Confirmations, Graduations. He never got to teach them how to drive and he surely will not be at their weddings.
Courtney and Brandon definitely inherited the best part of Mike. They are caring and loving individuals who look for nothing in return.
THEY ARE MY UNSUNG HEROES!!!
For the last few months, I have been collecting my thoughts on a tape recorder. I sometimes find my self rambling about one issue or another and it's only then do I realize all that we have been through as a family. Some painful memories have taken up residence in the recesses of my mind, which I can only assume is my mind's way of coping. Thinking about diagnosis, hospitalizations, set-backs and fears made me realize very clearly there are unsung heroes that don't get the full attention they deserve.
They are.....COURTNEY and BRANDON.
Do you remember what you were doing when you were 7 & 9 years old? Our children were being told that their dad "had a disease in his brain that may cause him to do funny things. He may forget things, or act confused, but he will always be their dad". They were being asked to understand a disease so many adults don't understand. They were asked to help out when most adults ran away. Mike functioned pretty well until 2003/2004 - when Courtney and Brandon were 9 and 11. What were you doing at that age? Going to friends houses, parties, being a kid? Our children were asked to help put their dad's shirt on, lead him to the bathroom, cut up his food, tie his shoes - all the things that a dad is supposed to do for his children. I will not say that Courtney and Brandon missed out on everything, but I WILL say they missed out on alot.
At this time Mike was beginning his anger/agitation stage. I remember the four of us in the supermarket. Mike began to get agitated and confused with all the bright lights, music, people talking etc. With a cart full of groceries, Mike started yelling and becoming combative. We got alot of stares from strangers. Instead of our children retreating, they helped me control the situation. Courtney took Mike outside to the car to keep him calm, while Brandon helped me pay and bag our groceries. It was after that outing that I decided Mike was no longer able to go with us anymore, It wasn't worth him getting overwhelmed, or the kids being embarrassed. Strangely enough, neither one of them was embarrassed, but Mike's days of going with us food shopping were over.
This leads me to to next obstacle. Because Mike couldn't go many places, and someone had to be with him most of the time, Courtney and Brandon couldn't go many places...unless of course a kind friend offered to drive them somewhere. They never wanted to ask their friends for rides, they didn't want to feel like a burden, so instead, they missed out on alot. Something as simple as meeting with friends at another friend's house, was impossible unless they got a ride. Going to the movies, parties, it was all the same.
As the kids got older, and Mike's disease progressed, their responsibilities with their dad changed. Now they were feeding him, bathing him, shaving him and help with changing his diapers. Is that something you did when you were 12 and 14? Did you spend countless hours after school in a hospital room wondering if your dad would survive another medical issue? Were you more often than not, dismissed by professionals who thought you didn't know what was going on, just because you were too young? Would you be able to keep up good grades (mostly A's and some B's) while your life was turning upside down? Courtney and Brandon did. They excelled in High School despite all that was going on at home. When I think about the nonsense that most teenagers complain about in their life, my heart breaks. My children have gone to hell and back and very rarely do they ever complain. They are NOT PERFECT, they fight with each other and that does cause some added stress on me, but I am glad they can still act "normal" in the face of all the "craziness".
When you were a teenager, were you aware of mortality? I remember back to my youth and specifically being asked to write a paper in English senior year, "If you had six months to live, would you want to be told"? It was a lesson to make us think about life and the pros and cons of knowing (or not knowing) when we may die. That was probably the first and last time I thought about death. Courtney and Brandon have been dealing with their dad's terminal illness for almost 11 years! They lived through the horror of Mike being given Last Rites and going home from the hospital that night thinking they were never going to see their dad again. Most kids that age are lucky enough to not have to think about these things. My children do.
Courtney and Brandon are my unsung heroes! Their childhood was destroyed by Alzheimer's Disease. The only clear memories they have of Mike are from early in his diagnosis. He never made it to their Confirmations, Graduations. He never got to teach them how to drive and he surely will not be at their weddings.
Courtney and Brandon definitely inherited the best part of Mike. They are caring and loving individuals who look for nothing in return.
THEY ARE MY UNSUNG HEROES!!!
Tuesday, February 14, 2012
To My Valentine
It is 1984 and I am working two part time jobs as I try to find a full time job after graduating college. I was working at both Friendly's Ice Cream and Channel Home Center. While at Channel, I became close with a group of people and we became like family. We would work hard and go our frequently on the weekends. It was the 80's so it was night clubs, dancing and drinking. It was an amazing time to be in my 20's. In this group of people was one in particular that stuck out to me. He seemed very mature for his age and he was cute. There was a core group of four - 2 guys and 2 girls that would spend the most time together. We were two of that group. In the larger group of friends, we had no idea that some thought we were a couple long before we were. Our connection was obvious to others, but it took some time for us to realize that we had something special. We were hearing rumors that we were dating even though we weren't and we kind of laughed it off...until one night when we were out and heard Bonnie Rait's song "Let's Give Them Something To Talk About". We looked at each other and laughed, as that song just fit our situation so perfectly. He looked at me and said, "so, do you want to make those rumors true?".
And so began Mike's and my relationship. We've been together 27 years, married for almost 24. Never in my wildest dreams did I ever think our future would wind up like this.
Back on that night, which I can remember perfectly, I was just interested to see where the relationship would go. I had no idea that Mike was four years younger than me - and I took ALOT of grief for that. Of course, Mike's friends all thought it was great - dating an older woman. Of course I got the "cradle robber" comments. There was even a brief moment when I thought, maybe this isn't such a good idea. Of course, I decided to stay with Mike.
And stay I did and I wouldn't change a minute.
I know the name of the monster that will eventually take Mike away from me, but I know in my heart of hearts I will have done everything I could for him. That's all one can ask from the love of their life and there's no doubt in my mind that Mike would have done the same for me.
Happy Valentine's Day Mike - I love you. TOGETHER FOREVER.
And so began Mike's and my relationship. We've been together 27 years, married for almost 24. Never in my wildest dreams did I ever think our future would wind up like this.
Back on that night, which I can remember perfectly, I was just interested to see where the relationship would go. I had no idea that Mike was four years younger than me - and I took ALOT of grief for that. Of course, Mike's friends all thought it was great - dating an older woman. Of course I got the "cradle robber" comments. There was even a brief moment when I thought, maybe this isn't such a good idea. Of course, I decided to stay with Mike.
And stay I did and I wouldn't change a minute.
I know the name of the monster that will eventually take Mike away from me, but I know in my heart of hearts I will have done everything I could for him. That's all one can ask from the love of their life and there's no doubt in my mind that Mike would have done the same for me.
Happy Valentine's Day Mike - I love you. TOGETHER FOREVER.
Friday, February 10, 2012
Simple Truth
I posted this on Facebook, but I felt the need to post this simple truth here also:
In my entire life, I don't think I have shed as many tears as those that have been caused by Alzhiemer's Disease.
In my entire life, I don't think I have shed as many tears as those that have been caused by Alzhiemer's Disease.
Thursday, February 9, 2012
24 Hours
In 24 hours: got a notice of Deposition for Brandon's car accident last year, Mike's aide called in sick, Mike's breathing heavy, he's got the beginning of two more sores (on his back by ribs) and found out the aide that had worked the last 2 Saturday's cannot work with us anymore.
How much can one person take before they give up?
I know things can get worse, but can't I get SOME kind of break?!
How much can one person take before they give up?
I know things can get worse, but can't I get SOME kind of break?!
Friday, February 3, 2012
Medicaid Mess
I hadn't written about this previously because it upsets me SO MUCH.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.
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