Personal Blog #22 ... Voices of Dementia Caregivers ... 3/23/21

 

The Havergal School, a private Pre-K -12 girls boarding school in Ontario, Canada has a club consisting high schoolers who visit and engage with dementia patients regularly at a nearby nursing home.  The club issues a newsletter that includes interviews with people who care about those with dementia, and I was asked to reply to written questions which were then published in their January, 2021 newsletter.  Maybe some readers will find something helpful in my answers.

Monday, January 11, 2021

Voices of Dementia Caregivers: Allan S. Vann

This month, we had the wonderful opportunity to interview Allan S. Vann, a retired school principal in New York, USA who became a full-time caregiver to his late wife Clare since her diagnosis of early-onset Alzheimer’s. He is here with us today to share some insight into his experiences as a caregiver for a loved one with dementia. 

1. If you are comfortable sharing, can you tell us about your caregiving experience and your loved one’s journey with dementia?

For the first four years of my wife’s journey with early/young-onset Alzheimer’s disease (AD), my life was one of non-stop daily 24/7 stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression, along with intense feelings of anger, doubt, guilt, frustration, loneliness, and many other emotions.  Similar strong emotions often result in many caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting regularly with doctors or therapists, or experiencing dramatic weight gain or loss.  In my case, stress drove me to my comfort foods and I gained nearly 100 pounds during those years.  I still haven’t lost the last 40. Stress also led me to develop eczema on my face and scalp.

Helping a loved one with early to moderate stage Alzheimer’s with the most basic activities of daily living ... brushing one’s teeth, showering, getting dressed, eating, taking daily medications, etc. ... becomes progressively more difficult.  Caring for a loved one who is constantly confused, no longer remembers your name or who you are, or who can occasionally become aggressive, is emotionally painful. 

After caring for my wife by myself at home for almost 7 years, I finally had to place her in the dementia unit of an assisted living facility.  Caregiving then was then no longer my primary role … my role morphed from primary caregiver to primary care advocate to make sure that my wife was being treated properly each day.  But that new role didn’t really lessen my daily stress because even though my wife was in excellent facilities, many staff members were not sufficiently motivated, trained, educated, or properly supervised to consistently provide the care I had expected her to have.  That led to many meetings with administrative staff to discuss instances of poor practice or examples of uncaring personnel. I remained her care advocate when she spent a month in a psychiatric facility, and finally when she entered a nursing home.

Fortunately, due to long-term health care insurance, I did not face perhaps the biggest cause of stress for AD caregivers here on Long Island, NY.  There is a tremendous amount of financial stress faced by most caregivers.  Unless one qualifies for Medicaid, is very wealthy, or is lucky enough to have outstanding long-term health care insurance and prescription drug coverage, caregiving costs can be astronomical.  For someone with AD here on Long Island, assisted living facilities generally run between $7-$10,000 per month ... or more ... and nursing homes will charge about $16-$19,000 per month ... or more.  24/7 home health aides will cost about $15,000 per month ... or more.  Caregiving costs can drain not just your loved one’s bank account, but also the retirement life savings that the caregiver will need for the rest of his/her life. 

Once my wife entered assisted living, I suddenly had to deal with daily loneliness and enormous lifestyle changes.  Being alone in bed those first few nights after placement was painful and lonely beyond words ... and continues to be painful and lonely at times.  Living alone for the first time after more than 45 years of marriage brought incredible sadness.  I felt that I needed to be with my wife every day, so I visited her daily for 4 hours and I also took her out for longer periods a few times each week.  At a certain point, facility social workers, observing my stress, suggested that I not visit so often.  I tried doing that for a week or two, but I missed not seeing my wife so much that I went right back to visiting her daily.

One article I wrote during that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly felt both married and widowed at the same time.  I loved being with my wife each day, even when she no longer knew who I was or that we were married.  But many days were extremely painful.  We would be cuddling on a couch in the facility lounge, I’d tell her that she looked beautiful and how much I loved her, and she’d say to me something like, “Oh, thank you.  You’re such a nice man.”  Or, she’d say, “You’re such a nice lady. I love you too ... but can you please help me find my husband?”  Sometimes I’d say something like, “Honey, guess what?  I found him; I found your husband.  It’s me, Allan ... I’m your husband.”  To which my wife would usually respond with something like, “Oh, that’s nice.  But can you help me find my husband?”  It is absolutely no surprise to me that research finds caregiver stress a high-risk factor for caregiver mortality. 

One person in my own Alzheimer’s support group said that caring for her husband was “grief on the installment plan.”  I couldn’t agree more.  I experienced what psychologists refer to as “anticipatory grief” for so long that I didn’t expect my wife’s death to hit me as hard as it did.  But I was very wrong.  Her death sent me into a period of 3 years of depression followed by another half year of overwhelming sadness.  I have only been able to truly move on with the rest of my life during this past year because I was lucky enough to find that special someone.

 

2. What were some of the most rewarding and challenging moments you encountered in your interactions and relationships? 

The most rewarding moments were those fading moments of clarity with my wife … when she knew who I was, that we were married, and that we loved each other.  We had a “fairy tale” marriage for more than 40 years before she had to deal with AD … she died a month before her 69th birthday, and 2 months before our 49th anniversary.  So those few and far between moments were very special.  But so was every single visit when I knew I was losing her.

The most challenging moments were simply dealing with my emotions each and every day … both when I was with my wife, and when I was home alone.

3. What is one thing you wish people knew about dementia? 

I suppose there are 2 things I wish more people knew about dementia. The first is that it doesn’t only affect the elderly.  My wife’s first symptoms surfaced in her late 50s.  The 2nd thing I’d like people to know is that research funding to find a cure for AD and other forms of dementia should be a much higher priority in many countries, including in the U.S.  For example, our CDC, Centers for Disease Control, consistently lists AD as the 6th leading cause of death in this country, and admits that number of deaths is severely undercounted (a perfect example is my wife’s death certificate which does not list AD as a contributing cause of death) and is probably the 3rd leading cause right behind heart disease and cancer … this year being excepted, of course, since Covid-19 became the 3rd leading cause of death in the U.S. in 2020.  Yet many other diseases causing many fewer deaths regularly receive more federal research funding … despite AD being the only one of the top 10 causes of death with no effective means of prevention, treatment, or cure.

4. Have you ever encountered any stigma or stereotypes surrounding dementia that you would like to dispel?

My wife lost almost all of her friends after she was diagnosed with AD, something that is very common for people with dementia.  Either some people aren’t sure of how to act in the presence of people with AD, or they are scared, or maybe even very ignorant people feel they can “catch” this disease from someone who has it.  Now that I’m writing this, I just may do my own research into why this is so!!   But, for whatever reasons, too often people with dementia lose their friends in a very short time.

5. What advice would you give to others who have a loved one with dementia? 

I recently made a presentation to caregivers that included a handout listing “Ten Steps to Take When the Diagnosis is Alzheimer’s/Dementia.” After my presentation, I posted those 10 steps as a Personal Blog on my website at www.allansvann.blogspot.com.  For more information about each step, please go to my website.

1. Take away the car keys. 

2. Meet with an eldercare attorney. 

3. Meet with a certified financial advisor

4. Discuss long-term care options. 

5. Learn about Alzheimer's and other forms of Dementia at responsible websites.

6. Locate daycare options.

7. Join a good caregiver support group.

8. Check out websites maintained by other caregivers.

9. Travel with your loved one now ... while you still can.

10. Check for possible free respite opportunities for yourself.

 

We would like to sincerely thank Allan for taking the time to share with us his personal experiences and takeaways from his experience as a dementia caregiver. Allan also runs a blog called Reflections of an Alzheimer’s Spouse, and can be found at www.allansvann.blogspot.com

Access online at: http://dementiaawarenessprogram.blogspot.com/2021/01/voices-of-dementia-caregivers-allan-s.html 

Personal Blog #21 ... Full Acceptance of a Spouse’s Death Due to Alzheimer’s ... 3/3/21

Next month makes it 5 years since I lost my wife, Clare, to early/young onset Alzheimer’s disease (AD).  Having experienced years of “anticipatory grief,” I thought I’d be able to move on quickly after Clare’s death … but I was wrong.  I ended up dealing with depression for 2 years, followed by overwhelming sadness for more than another year, until finally able to move on with the rest of my life. 

For me, the most important part of moving on was trying to find love again. With online profiles posted on 4 dating sites, meeting women was not a problem but meeting the “right” woman seemed impossible.  After nearly 50 years of a “fairy tale” marriage, I just could not find someone as special as my late wife.  I was about to give up and then … serendipity!  The “right woman” turned out to be someone I’d known for 25 years, and I have now been in a wonderfully loving relationship during the past year.   

I consider myself incredibly lucky to have found love again and look forward to spending the rest of my life with my “second act.”  But if I am so happy and in love again, why do I still sometimes cry about losing Clare?

I recently watched a TV show where 2 characters, I’ll call them Joe and Bob, are discussing the grieving process.  Joe is trying to comfort Bob, who is struggling to move on after losing his wife earlier that year.  Joe asks Bob if he knows the 5 stages of grief and Bob says yes …  denial, anger, bargaining, depression, and acceptance.  Joe says to Bob that it’s only been a few months since he lost his wife and to give himself more time to reach acceptance.  Bob, knowing that Joe also lost his wife decades earlier, asks Joe how long it took him to reach acceptance.  Joe says he’ll let Bob know if he ever gets there … that he is still stuck in stage 2, anger.

I thought I had reached acceptance, and that allowed me to move on to try to find love again.  I no longer mourn Clare’s death on a daily, weekly, or monthly basis.  But sometimes I still experience anger … anger directed only at myself, expressed in the form of guilt.

I sometimes see something while watching TV that makes me feel very guilty … that I fell short of giving Clare more happiness.  I think, “Why didn’t I do more with Clare during her final days of clarity?”  Fortunately, each time that happens the tears and anger pass quickly because I know deep inside that I did all I could.

I think that what I am really saying to myself is that I wish I had some sort of “advance notice” of the exact time when Clare’s last moments of clarity would end.  I wish I would have known in advance that her final downward spiral really was her final downward spiral … the one she would never return from, the one that was never-ending and ever-deepening, that black hole where there is no awareness and from which there is no escape.  I wish I had more time with Clare as best friends, as husband and wife, as lovers before I became a total stranger to her.

I have gone through the 5 stages of grief, come out “the other side,” and moved on.  Yet, in some ways, I think that I have remained stuck in that second stage of grieving, anger, even though it has been so long since losing my wife.  I am happy again, smiling and laughing again, in love again, and looking forward to spending the rest of my life with my second act.  But some anger, expressed as guilt, still remains.

Maybe it is more common than I had thought for some surviving AD spouses to still feel angry at themselves after many years as a widow or widower.  Maybe after many years in a loving marriage, grief … in one form or another … never truly ends for surviving AD spouses.  Not even when surviving spouses are lucky enough to find love again.

Swiss psychiatrist Elisabeth Kubler-Ross, who is credited with describing the 5-stage grieving model, states that my grief will never truly end.  She wrote: “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same.” 

Whereas I feel extremely lucky to finally feel “whole again” with a woman I love, I have also finally accepted that I will forever grieve the loss of my wife.  Other surviving AD spouses who may occasionally find themselves re-experiencing painful memories must also accept this reality, with or without new love in their life. 

Unlike “Joe,” I have now made peace with that statement by Kubler-Ross.  I have acknowledged that it is “okay” for me to continue experiencing brief intense feelings of loss on occasion.  It has taken me 5 long years to get to this point in my grieving process … but I think I can finally say that I have reached full acceptance.