Welcome and Site Description

Last updated on 6/3/18
My apologies for the different fonts and background shades now appearing on this "Welcome" page, my "Publications" page, and in some of my posted articles.  I have yet to figure out why this is occasionally happening or how to correct it ... but I will continue to work on resolving this issue!  

Begun in August, 2013, this site was designed for visitors to read one or more of my published articles and blogs dealing with Alzheimer's disease (AD).  You may post comments, but if you want me to respond to your comments please email me directly at acvann@optonline.net with the word "blog" or the title of my article in the subject line.

I am proud to inform readers that this site has been designated one of the best online Alzheimer's disease (AD) blogs by healthlinea consumer health information site visited by millions of people each month seeking health information ... feedspotan RSS reader site providing its subscribers with up-to-date information on requested topics ... The Long and Winding Road, a site with much information for Alzheimer's caregivers ... and Telecam, a site whose mission is to improve the quality of live for caregivers and families living with AD and other forms of dementia.

Back Story
I am a retired public school principal and was a 24/7 caregiver for my wife, Clare, a retired high school teacher, living in Commack, Long Island, NY.  Clare was diagnosed with early/young onset AD in 2009, one month after turning 63.  I had already been noting AD symptoms for several years, but Clare performed extremely well on various AD screening tests given to her by both our internist and neurologist, and she never exhibited any AD symptoms in doctors’ offices.  I maintained daily, weekly, and monthly logs of my observations and shared these with doctors during each visit, but my logs and observations were routinely ignored.  Even as Clare’s test scores significantly worsened, her brain MRI "appeared normal” and she continued receiving treatment for stress, anxiety, and/or depression.

Increasingly frustrated that my observations were being totally dismissed, I was finally able to convince Clare that it was time to go for a second opinion with a doctor affiliated with an Alzheimer’s Disease Research Center.  After 2 months of testing, Clare was diagnosed with early/young onset AD and told to stop taking all medication for stress/anxiety/depression.  Shortly thereafter, Clare was prescribed Aricept.  In 2011, Clare also started taking Namenda.  However, I removed Clare from both Aricept and Namenda in 2013 due to concerns over side effects and the complete absence of any research indicating that either medication could possibly be effective after 2 or more years.

Clare’s AD had followed a fairly consistent pattern for several years, one that I described as a series of “cliff falls and plateaus.”  Clare would suddenly display a significant decline in one particular AD area, just as though she had fallen off a cliff.  She would then stabilize and maintain herself at that level for 3-6 months, as though on a plateau.  Then she would suddenly fall off another cliff, followed by another plateau. 

For 3 years shortly after Clare's diagnosis, we both attended weekly support groups at the Long Island Alzheimer’s Foundation (LIAF) in Port Washington, NY.  (In 2017, LIAF moved its main office to Westbury, NY.) Clare attended a group for those in early to moderate stages of AD, while I attended a group for spouse caregivers of those in early to moderate stages of AD.  Groups met in separate rooms at the same time.  In the fall of 2012, however, we withdrew from our support groups because I needed to place Clare in day care programs 3 days per week to give me some respite time and the day care programs conflicted with support group meeting times. 

Clare’s cliff fall/plateau pattern continued until mid-November of 2012, when Clare started falling off a new cliff without reaching any plateau.  As Clare’s decline worsened in the spring of 2013, I had to increase her attendance at day care programs to 4 days per week to provide me with even more respite time and provide her with more socialization and mental stimulation.

Clare finally reached a plateau and stabilized during the summer of 2013, but she was now dependent on me for just about everything.  Clare was admitted into an assisted living facility on 9/10/13 and a new phase of our AD experience began.  For the next 6 months, I visited Clare daily from 3-5 p.m., leaving when it was time for dinner unless I was taking her out for dinner.  In March, 2014, I was asked to either hire an aide from 5:30-7 p.m. or stay with her myself during that time because Clare was very anxious after dinner, worried about me and missing me, requiring the full-time attention of an aide.  I chose to stay for that extra time.  Unless taking Clare out for dinner, I ate a "bag supper" in an adjacent room while she had dinner, and then after dinner we'd usually go to a lounge and watch TV.  

Clare then became confused all the time, lost most of her language skills and understanding of simple concepts, and I became the only family member she recognized either in person or in pictures.  She couldn't even recognize herself in pictures.  In August, 2014, I made a conscious decision to reduce my visitation time to "get on" with my own life. I was in and out of depression, and decided to reduce my visitation time to just 5:30-7 p.m. 6 days each week and then for 4 hours on Sunday.  So, in September I started skipping one day each week, and in October I started skipping 2 days during the week.  After a few weeks, however, I stopped skipping days and was back to daily visits.  Clare was so happy whenever she was with me, happiness only I could provide, and I had also been missing her so much.  I realized that I was just not ready yet to "get on with my life."  After I made that decision to see Clare again on a daily basis, I felt much better and even began sleeping a lot better.  

Every Sunday from then on I was with Clare from 3-7 p.m. We went out for dinner and/or got together with friends, saw local musical plays, or sat at the beach.  In addition, once or twice a week I took Clare out for lunch and then cuddled with her in one of the lounges in her assisted living facility for another hour or so.  On all other days, I visited with Clare right after dinner at 5:30 and we sat in the lounge until 7 p.m. We kissed and hugged and I watched TV while Clare fell asleep in my arms. I was told that Clare had no memory of my having been with her just minutes after I left her each day, and if not immediately re-directed to an activity she started asking aides repeatedly, "Has anyone has seen my husband."  Nevertheless, "in the moment" with me Clare was extremely happy, telling me over and over that "you are such a nice man" (and, sometimes, "you are such a nice lady") and telling me how much she loved me. 

Knowing that my visits made her so happy, I had planned to continue visiting Clare every day for at least as long as she still knew who I was. In April, 2015, I skipped 7 daily visits in order to drive out to spend time with our son and family in Michigan ... and to see our granddaughters participating in some of their activities in person instead of on video.  They missed seeing their Pop Pop and I missed them just as much.  During my visit, Clare's facility director emailed me to say that Clare was doing fine and I should relax and enjoy my visit. That email definitely helped to relax me and ease some of my worries ... and guilt ... and I decided to visit my son and his family every few months from then on, just as Clare and I had always done before Alzheimer's made it too difficult for her to travel. 

On subsequent visits, I learned that there was no difference in Clare's behavior whether I came to visit her every day or not.  She missed me when I was away on those trips ... but no more than she missed me when I was home and able to visit her each day.

I had also taken on a major new role ... caregiver advocate. Whereas Clare's assisted living facility was an excellent setting, there were numerous "glitches" that were not satisfactorily resolved until I went up the chain of command to speak with the executive director.  After each meeting there was improvement, however many of the same problems continued to resurface, mostly due to insufficient training and supervision of aides.  

On July 21, 2015, a segment of the CBS TV Evening News showed Clare and me as part of a feature story on Alzheimer's.  You can see the on-air footage as well as extended footage at http://www.cbsnews.com/videos/when-alzheimers-disrupts-a-marriage/ and you can see Dr. LaPook's interview of me at http://www.cbsnews.com/news/alzheimers-disease-women-decline-faster-than-men/.  

Whereas CBS edited a lengthy interview into a human interest story to increase AD awareness ... and Clare looked beautiful ... everything I said about the need for increased federal funding for AD research and other important matters all ended up on the proverbial cutting room floor.  In the spring of 2017 I was contacted by CBS TV for a follow-up interview, but I passed.

Fast forward to September of 2015 and Clare no longer knew who I was.  She knew that I was someone she loved and that I loved her, but the concept of husband and wife was beyond her comprehension. More and more I was that "nice man" ... or, increasingly more often, a "nice lady." I was no longer able to take Clare out to eat because she was just too confused and disoriented when we'd return.  

Feeling both married and widowed at the same time, a feeling that was incredibly painful, I cut back to only 5 visits each week, but continued stress prevented me from moving forward as I had hoped to do.  On the advice of the facility social worker, I cut back to only 3 visits each week so I could stop grieving and mourning ... and move forward as Allan, no longer as part of Clare and Allan.

However, my plans did not materialize.  In mid-October Clare suddenly became much more anxious and aggressive when I was not with her.  I hired personal aides to calm her down and re-direct her back to activities when she got very upset, but not even personal aides proved helpful.  In late November, Clare was discharged from her assisted living facility to a psychiatric hospital.  I visited her every single morning and evening while she remained there for 3 weeks under a psychiatrist's care.  She was removed from all of her anti-anxiety and anti-depression medication, new medication was successfully introduced, and Clare was able to return to her assisted living facility on the condition that I hire a personal daily aide for her. 

Through February, 2016, Clare remained at her assisted living facility with personal aides for 70 hours per week.  I visited 4 times a week for a total of 8-10 hours.  Clare started crying more often during the day and was no longer participating in her many daily activities, despite the best efforts of the aides.  I knew that the time to move her to a nursing home was coming soon. 

A hospitalization for 5 days in early March served as a transition stage and, instead of returning to her assisted living facility, Clare was discharged from the hospital directly to a nursing home.  For the most part, Clare adjusted well to her new surroundings.  I was also very pleased with the higher quality of care she was now receiving on a daily basis.  I continued visiting with 5 times each week, but after taking her out once for lunch I could not take her out again. She was just too weak.  Confined to a wheelchair, having difficulty swallowing food and medication, with weakened voice quality and more confusion, Clare's body seemed to be breaking down completely. 33 days after admission into the nursing home, Clare passed away. 

Clare passed away calmly in her sleep on April 12, 2016, one month shy of her 70th birthday and 2 months shy of our 49th wedding anniversary.  She is missed more than any words can say.  But I take comfort in knowing that it just was Clare’s time.  She had said to me several times in her final weeks, “I can’t do this anymore.”  But whenever I asked what it was that she couldn’t she do anymore, she was unable to tell me.  I think that Clare knew that her body was getting increasingly impaired and she didn’t like being spoon fed and having difficulties swallowing, sitting in diapers, confined to a wheelchair, etc.  She was ready to go.  I’m just happy that she was relatively calm during her last few days ... and very happy when with me.

I will go to my grave believing that right before Clare died, we shared some sort of 'cosmic connection’ ... as if Clare had somehow read my Huffington Post column published on 4/11/16, the day before she died. That column was titled, "Alzheimer's Spouse Not Ready to Move On."  It's as though Clare had somehow read that column and said after reading it, "Hon, you need to let me go and move on with your own life, so I'm gonna make it easier for you to do that."  Clare was always more worried about me than about herself.  If interested, you can read that specific column on my Huffington Post archive site or at ...

How this site is structured
Except for my 35 pieces in The Huffington Post, all of my journal, magazine, and newspaper articles are posted here in their published form where I hold the copyright, or in original pre-publication versions to avoid copyright issues. When you come to this site, my most recent publication will always appear first.  When you click on "Blog Archive" at the right side of this page, a list of all of my published articles will appear in order of publication. I started this blog site in August, 2013, so my first 15 published articles are all listed under that month.  Click on the month and title of any article you wish to read.  Following each article is a link to access the published version, but there may be costs involved to access some published articles. 

I had planned to stop writing about Alzheimer's in 2017 since I was no longer dealing with AD on a daily basis.  My last published article for caregivers was the "Inspirational Thoughts" article in the Spring, 2017 (April) issue of AFA Quarterly

In March 2017, an editor invited me to write online blogs for the bi-monthly peer-reviewed medical journal, Annals of Long-Term Care (ALTC), a leading long-term care journal and an official publication of the American Geriatrics Society. The ALTC journal is directed to doctors, nurses, health care workers and administrators in all types of long-term/post-acute care settings, such as Assisted Living Facilities and Nursing Homes. I could not say no to this opportunity to reach medical staff and administrators in long-term care settings.  

More than a year after Clare was gone, I was still having difficulties moving on with the rest of my life.  That led me to write and post Personal Blog #1 only on this site in July, 2017, and I have continued posting Personal Blogs about how I have dealt with the grieving process.  

MALTC articless may be read on this site exactly as they appeared online (or in their print issues) or may be accessed at my ALTC blog page ... http://www.managedhealthcareconnect.com/blogger/allan-s-vann-edd.  

Some final words
AD caregivers are all dealing with somewhat different issues because, as I was told on my first day in my spouse caregiver support group, “If you know one person with AD, then you know one person with AD.”  We all deal with loved ones with AD, but our loved ones do not all present the same symptoms and our greatest daily stressors are different for each of us.  For some it is behavioral issues.  For some it is being asked the same question over and over.  For some it is the inability of our loved one to carry out the simplest one-step direction.  For some it is the complications arising from non-AD issues such as heart disease, diabetes, or Parkinson’s.  And for some caregivers, the greatest stressor is the financial side of AD ... worries about how to pay for home health aides, companions, day care programs, assisted living, or nursing home placements ... and wondering how an ever draining bank account will leave you with enough money to maintain your current life style after this AD journey ends.

Despite these differences, however, all of us have one thing in common: We are all paddling our boats as hard as we can, trying to stay afloat in Lake Alzheimer’s.  We may be paddling in somewhat different boats and at somewhat different speeds, but all AD caregivers “get it” ... we all understand what it is like to be in our shoes. 

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