Tuesday, February 22, 2011

Young Onset

Way back when, when Mike was first diagnosed (10 years ago), statistics showed that approx. 2.5 million Americans suffered from Alzheimer's Disease. Of those 2.5 million, 1% were Young Onset individuals (250,000)- those diagnosed under the age of 65. Today, statistics show that approx 5-6 million Americans have Alzheimer's Disease, yet the number for Young Onset remains the same at 250,000. I find that extremely hard to believe, because in my small world of people, the numbers have skyrocketed.
In 2004 a young mother in Florida saw me on CNN and searched me out because she found herself struggling in very much the same way I was. We connected and became friends , sharing a heartwrenching experience of a spouse we no longer knew.
Today, my network of friends and connections of those losing a spouse to Young Onset has grown tremendously - and if the numbers have increased in my little world, how could they not be increasing elsewhere? As much as Young Onset is continuing to remain a fast growing concern, I still feel it's not getting the attention it needs and more importantly, deserves.
Taking that into consideration next Wednesday, the kids and I will be heading to our State capital in Albany to meet with our Representatives to bring to light the continued issues affecting those with Alzheimer's Disease, specifically for us, Young Onset Alzheimer's. We cannot make it to Washington this year due to the timing - it's Brandon's birthday weekend and Courtney has finals, so we decided to join other advocates from the Long Island Chapter of the Alzheimer's Association and visit Albany.
I am not only doing this for Mike and our family, but for my other friends: Rhonda's ex-husband, Tracey, Michelle's husband, Carla's mom, Pat's wife, Ira's wife, Rich's wife, Frank's wife, Elena's husband, Lynn's husband, Kathy's husband, Dorata's husband, Trish's husband, Kathy's husband, Carl's wife, Linda's husband, Nikki's husband - and the countless other families who are suffering each and every day.

Wednesday, February 16, 2011

A Sudden Loss

Yesterday morning, a beloved teacher at Brandon's High School (and Courtney's former teacher) was killed in a car accident on his way home from my his Aunt's funeral. He leaves behind a wife and two young chldren. His death has been on my mind since it happened and I can't seem to shake it.
What's worse----- watching your loved one die a slow death every day or suddenly wake up to find they have been taken suddenly? Is it better to spend years preparing - or - is it better to have to deal with the sudden shock and then move forward?
There is no better or worse in this scenerio. As much as I am fully aware that death is a part of life, it's accidents like this that make me take a step back and continue to thank God for all the blessing I have. Death, no matter how or when it comes, is a finality that most of us will always be unprepared for.

The teacher I am referring to is Mr. Edward Solosky and one of his students started a "memorial page" on Facebook in his honor.
I believe one of the biggest fears about dying is the fear of being forgotten...to not have left a mark. After reading Mr. Solosky's FB page, it is abundantly clear that he touched the lives of many people he met. The memories shared by students, colleagues and family members gave examples of the lessons he taught which went well beyond the classroom. He left behind a bit of his wisdom and sense of humor. By reading these shared memories, it will be comforting for his wife and two young children to see how deeply he touched the lives of these students (both present and past). No doubt he will not be forgotten. May he RIP.

Monday, February 14, 2011

Happy Valentine's Day

Another difficult year with AND without Mike.
(Picture taken in 1989)

Thursday, February 10, 2011

****** Mike's Diagnostic Journey *******

I recently met a new friend through my blog and she brought to my attention that since I began writing, I never explained what led to Mike's diagnosis. I didn't leave this out intentioanlly, I guess I never gave details because this blog began as a way for me to keep family and friends updated on Mike's forever changing condition. As time went by and I began to use this blog as my voice for awareness, I guess I never thought of sharing Mike's diagnosis saga, so here goes.
Mike's mom was diagnosed with Early Onset Alzheimer's (now called Young Onset Alzheimer's) back in 1985 - the year Mike and I began dating. She was only 45 but began showing signs of confusion and forgetfulness. At first they believed it was the beginning of menopause, and at one point specialists were brought in from Albany. They questioned whether she may have had Creutzfeld-Jacob Disease (mad cow). Her decline was rapid. When I met Mike in July 1985, his mom was still living at home, but by December of 1985, she had to be admitted to the hospital where she soon lost her ability to speak clearly, walk or feed herself. She was then admitted to a nursing home where Mike's dad visited her every day after work. Mike's college was near the nursing home so Mike went quite frequently during the week and we both went every weekend. Our visits were usually short. Mike was exceptionally close to his mom and seeing her in this condition broke his heart. The nurses and aides took very good care of her because she was their "sister" (Mike's mom had been a nurse) and they saw themselves in her. Mike was 20 years old at the time and this was more than he could bear. Mike's dad never sought grief counseling and between the stress of his job, his wife's illness and raising three boys, he developed cancer in Jan, 1989 (2 months after we were married) and passed away in Nov., 1989. By this time Mike was only 23 and his dad had just passed away and his mom was in a nursing home. We had a tough first year of marriage.
During his mom's illness, we had researched the disease and even went to a few symposiums here on Long Island. Nothing in our research ever suggested the genetics of Early Onset and what the percentages were for future children.(the children of patients with Early Onset have a 50/50 chance of inheriting the gene that causes the disease). Because of Mike's illness I always grew concerned whenever Mike became forgetful. In the fall of 2000, Mike and I had taken Courtney and Brandon to our friend's house in Pennsylvania. After one long day of trying to figure out who was going where and with whom, Mike, Brandon and I set out to a minor league baseball game (our friend had luxury boxes) while Courtney, her friend and her mom went to a carnival. Halfway through the ballgame, Mike looked at me and said..."so where is Courtney anyway?" I will never forget those words as they were the spoken words that changed my life forever.
We got back home from that long weekend and I immediately scheduled a visit for Mike to see our physician. Instead of blowing me off because of Mike's age, he took us seriously and ordered further testing with a neurologist as well as recommending Mike see a psychiatrist (because of Mike's past and losing his parents they thought he may be suffering from depression). Since Mike was still functioing well (no problems at work or driving), they decided to just "keep an eye out". By December 200, after 13 years at his job, he was fired two weeks before Christmas. Mike was devastated and felt like a failure. He couldn't even tell me in person, he wrote me a note. My heart broke because I saw how scared he was and how it was eating him apart. He had great contacts at his job, so he was able to find employment with a competitor in Jan. of 2001. By Feb, 2001 he was let go from THAT job and I knew we had real problems. The psychiatrist told me that he felt Mike was NOT depressed and he believed he had something called "familial dementia". He had recently diagnosed another man on Long Island who got lost on his way to his child's school - that man was 32. By this time Mike was 36.
After a few days of neuro-psych testing, he was officially diagnosed with Early Onset Alzheimer's in April 2001. We withheld the diagnosis from our children until Memorial Day weekend of that year. After consulting with a child psychologist, we thought the long weekend would give them the extra time they needed to digest what was happening...they were 7 & 9 years old and the day we told them was the ABSOLUTE worst day of our lives.
We had a few "good" years with Mike before he entered the anger/agitation stage. I honestly thought he would not go throught this stage because Mike had never raised his voice at all, not once in the 16 years I had known him. Then in the spring of 2004 Mike put his fist through our kitchen wall (he was trying to leave the house and my mom locked the door at my request for fear of him wondering away). He had horrible days of screaming, crying, kicking the dog and throwing things until I was concerned about the effects it was having on the kids. I called Mike's doctor and she suggested that I bring him to the psychiatric hospital so they could regulate his medication. We decided from day one that we would keep Mike at home with us for as long as we could and if medicating him would allow that, we were OK with it. He came home a few months later, but then was rushed back again where he remained for about two months. He came home in Sept. 2001 and by this time we needed an aide to assist in his care. Since I worked full time, he could not stay at home by himself and we needed someone who was trained.
Over the next few years Mike suffered from numerous health issues: dehydration, blood clots, pulmonary embolisms, infected/bleeding gall bladder (requiring surgery), collapsed lung, seizures, UTI's and pneumonia and with each illness he was hospitalized. We spent so much time in the hospital and after each visit, Mike seemed to regress. While there he would develop bed sores, C-Diff, staff infections and MSRA. We developed wonderful relationships with several hospital staff who made these visits tolerable, but we dreaded each hospitalization because we knew how it would affect Mike. Finally we made the decision to place Mike on hospice. While our children were hesitant at first (simply because what hospice implies) they agreed after I explained to them it was my way of keeping Mike out of the hospital. Mike has not spoken in about 6 years, nor walked in about 6.
Mike has been at home with us on hospice for the past two years. His condition has been declining - he eats less and less, he aspirates occasionally, he develops pressure sores more frequently and he gets fevers. We remain true to our word in keeping him at home with us, but I will not lie and say it has been easy. We sacrifice quite a bit, but our faith has kept us strong. I know without a doubt that Mike would be doing the same thing for me - or anyone else for that matter because that is the person Mike is. I have good days and bad days and I would say the most difficult thing is not having the respite I need. It's been YEARS since I have had a real vacation and the 24/7 care takes it's toll on all of us (I am happy to say though that our children do get to go away, they go out often and enjoy their time with their friends - as they should). As Mike's condition has deteriorated, it makes it more and more difficult for me to get time away. I advocate as much as I can and I truly believe that the #1 issue with caregivers should be respite time.
When Mike was first diagnosed that day in April, 2001 - he said three things to me: 1) He was concerned about what this would do to our children since HE had a difficult time and he was 20 when his mom was diagnosed; 2) it was "OK" to place him in a nursing home, he gave me his permission; and 3) he wanted me to re-marry. I believe our children, despite some recent concerns, have faired pretty well and I am honored to say that I didn't have to place him in a nursing home. I have been blessed with very special people in my life who have guided me and helped me on this journey...
Now if only I can get that vacation :)!!!!! (Yes, keeping a sense of humor is an absolute necessity)

Tuesday, February 8, 2011

Older and Wiser

Senior year at Courtney and Brandon's High School, as part of their religion class, they take a course entitled "On Death and Dying". When Courtney took this trimester of class, I knew little of it. She felt comfortable with the subject matter as we had been dealing with Mike's illness for years, in essence preparing for Mike's death. This year is Brandon's turn and he is having issues with the course. I thought of contacting the school, but he explained to me that there were students in the class who had recently lost a parent or close friend, yet they were not excused.
Since this course began, he has been struggling. He began getting migraine headaches and we've had NUMEROUS dicussions on Mike's current condition. Brandon and Courtney were only 7 & 9 (respectively) when Mike was diagnosed...far from having their own opinions and thoughts about the ravages of the disease. Now, after 10 years of watching him lose his dad to Alzheimer's, Brandon is having a diffcult time accepting the condition and "quality of life" that Mike has. I'm struggling because I find that our opinions differ.
Brandon is at a point wherein he believes that Mike would not like to be "living" like this. He feels he is being tortured by living in his "shell". I absolutely cannot disagree with his feelings, just because they are HIS feelings. What upsets me to a degree is that when he sees his dad, he sees a man suffering.
For years I have tried to explain to our children that we need to keep our faith. We need to care for Mike, love him and honor his request for no feeding tube until the time comes for him to be with his mom and dad again. When Mike is sick with fever or in pain, my heart breaks because I HATE to see him struggle. I hate to see him in pain and I always pray that he will never have to suffer. On any given day, unless he is sick, I don't see Mike as "suffering". I would never prolong Mike's pain - yet this is how Brandon feels and it hurts me to now know this.
People have always said, Little children, little problems...big kids, big problems. This is not so much of a problem but proof positive that now that Brandon is older, he is developing his own thoughts and ideas. I am faced with the fact that as our children have grown into their own individuals, they have developed their own thoughts and rationales. Despite going to Catholic schools his entire life, Brandon just cannot accept that fact that this is God's will, that Mike's life is worth living until God calls him home.
I don't want Brandon to believe that his father is suffering., but truth be told, there's no definite way for any of us to know exactly how Mike really feels. I guess this is what has always bothered me most and now that my son is voicing his concern, there is no way for me to avoid the issue.

Friday, February 4, 2011

Wedding Picture

We were finally able to get a new printer/scanner and Courtney has been teaching me how to use it. I decided to scan one of our wedding pictures. I have been very sad lately because I have been missing the Mike I fell in love with. I forget how he sounds, how he acts... so I thought I would share to all my blogger friends a picture of us on our wedding day when we had our entire lives ahead of us.

Karen and Mike: October 28, 1988