I want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.
In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:
You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot. Smart. Funny. After a year of tests, he was finally diagnosed at 55. I had two children at home, the youngest was 12. I know you know my story… you wrote about it. We, too, became involved. Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board. We gave speeches. We too, walked on Washington and spoke to our Congressmen. We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers. For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition. They are following him ‘until the end’. We were asked to appear on FOX news and with Tom Brokaw, and on and on. It was exciting and we felt we were helping the cause.
Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time. It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating. I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed. “My parents raised me to take the high road, not the easy road.” I stayed. Then, when our public appearances waned and his life was not as busy, I found out his “wandering” had continued. He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed. I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute. Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him. My kids!! But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left. Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends . “This…this…cardboard” he said as I put them on him. “It will be ok. This kind doesn’t get wet” I said.
In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion. He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches. He has not been the same since. He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk. After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released. However, they would not release him to my care as he is considered a “two-person assist”. I was given three days to find a facility that would accept him. On Oct. 18, he was admitted into a personal care home. From the moment of the fall he dramatically changed and has not recovered…at all. He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent. He only knows who I am on rare occasions and doesn’t recognize our children at all. He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry. It has been a very difficult few months. I wish I could say life has become easier, but it has not. Under the circumstances, I thought I would have a sense of relief, but I do not. I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths.
-Thank you J for sharing such a personal and intimate look into your new life.
This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less. I can’t believe what a decline I have noticed within the past few weeks. I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen. I try to do all the things we used to do together, having to see if there is some kind of happy response. We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it. This year it was entirely different. It was like Henry didn’t care one way or another whether the tree is there or not. It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again. Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago. I miss those times.
Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc. and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family. I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other. This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions. I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says. Even though people know the situation, no one really knows what it is like unless they live it on a daily basis. The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.
Henry spends most of his day watching TV. He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him. He tells me he is happy being with the dog until I come home from work. I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.
-Thank you Denise for opening up to me and for your very kind words.
My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.
He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.
We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57. Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.
– Thank you Kimberly. You speak for so many.