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)


kathy said...

Thank you for taking the time and emotional energy to write about Mike's diagnosis. My husband was diagnosed with early onset a little over 4 years ago (he's 54), and he is still high functioning. He goes to adult daycare each day, and he thinks that is where he works. What a blessing that place is for us! You give me courage as I face many decisions in our near future. Blessings to you...I wish I could give you that respite you need. Kathy

trish said...


Thanks for sharing your story. Loved the wedding picture of you and Mike- you look like teenagers!

God Bless you,