Monday, September 2, 2019

Personal Blog #10 … Life After Moving On … 9/2/19



I didn’t expect to write anything else for this site after posting Personal Blog #9 last December.  I wrote in that posting, “Now that I have moved out of my comfort zone and moved on with the rest of my life, I don’t think I will have anything new to write about that could be helpful to others.”

I have moved on quite a bit … but not as completely as I had hoped.  I still miss Clare a lot, and every week I experience some degree of sadness, loneliness, and painful feelings of loss.  This site has received more than 100,000 visits since my first postings in 2013, so I’m hoping that site visitors who may also be struggling to fully move on and find happiness will read this and know that they are not alone.  I, too, am continuing to struggle.

In March, 2015, a year before Clare died, I wrote an article titled, “An Alzheimer’s Spouse … Married, Yet Widowed.”  As I watched Clare fading away from me faster and faster, I wrote: “I miss not having conversations with Clare.  We can no longer play games, travel … I miss all of the social, emotional, and physical parts of our once close relationship.”

Sadly, I could write those same words today.  During this past year I was lucky enough to have someone in my life who, while not fulfilling all my wants and needs, provided me the hugging and cuddling I have missed so much.  That alone gave me great happiness … but, unfortunately, that relationship was very short-lived.

I don’t expect to ever find “another Clare,” but I do hope to find a special woman to share the social, emotional, and physical aspects of a close relationship.  Such a special woman would add much happiness to my life and reduce my sadness and loneliness.

Contributing to my continuing sadness is my inability to focus only on positive memories of Clare.  Our last years were so emotionally painful that whenever I try to remember only the “good times,” my mind is quickly flooded with images of Clare after AD had already ravished her brain and body.  These are images I so much want to forget … but I seem unable to do so.  I just cannot block them out.

To keep feelings of sadness partially suppressed, there are TV shows and movies I will not watch, and music I will not listen to.  Watching loving couples on a TV show or in movies, whether enjoying life to the fullest or dealing with death, too often makes me cry.  Similarly, listening to some favorite old songs will often make me miss Clare so much that I just start crying.

Hoping to meet a special woman, I have been sampling more new clubs and activities for seniors at community centers and libraries.  Last year I joined an internet dating site, but I didn’t participate because I just wasn’t ready yet.  In recent months, however, I have been actively participating on multiple online dating sites.

These efforts have enabled me to meet several nice women … but not yet the right woman for me.  Many friends have suggested that I’ve set the bar too high, but I don’t think so.  Only a special woman will provide me with the relationship I really want. 

I know what I’m not looking for … I’m not looking for a friend “with benefits.”  I will never have sexual intercourse again. It may not make sense to others, but sex with another woman would feel like a betrayal of the incredibly special love Clare and I once shared.  However, whereas I am not looking for a friend with “full benefits,” a friend with “modified benefits” would be wonderful.

AD widows and widowers of all ages need to find new happiness in their lives.  Making new friends, pursuing old passions, and exploring new hobbies and activities are some ways to do this.  But for some what is needed most is a new close relationship to once again enjoy some aspects of the marriage they once had … a “second act” that will provide more happiness, less sadness, and less loneliness.
 
I have moved on quite a bit since Clare passed away, and since writing Personal Blog #9 last year.  The quality of my life is better now.  But … I am still hoping to have that second act.

Tuesday, December 4, 2018

Personal Blog #9 ... I’ve Moved On ... 12-4-18


  
When Clare was in early stages of AD, I was her 24/7 caregiver.  On her “good days” we continued living pretty much as we always had.  We went out to eat, saw movies and plays, traveled, socialized with friends, and played word games that Clare could still enjoy.  As Clare entered moderate AD stages and could no longer be left alone, we didn’t go out as much, did very limited travel, socialized with only a few friends, and rarely played word games.  Most of our time was spent watching TV together.  Staying home with Clare became my “comfort zone.” 

In 2013, when Clare’s AD worsened to where I felt I could no longer continue as her 24/7 caregiver, she entered an assisted living residence.  Other than visiting with Clare each day, I continued living alone in my comfort zone, spending most of my time watching TV.  I felt both married and widowed at the same time.

Experiencing what psychologists call “anticipatory grief,” especially after Clare no longer knew who I was, I foolishly thought that Clare’s eventual death would not hit me too hard.  But I was very wrong.  For 2 years after Clare’s death I continued to experience considerable sadness, depression, guilt, and anger among other negative emotions.  I just wasn’t ready ... or motivated ... to move out of my comfort zone and seemed unable to truly find happiness again.

This past spring, however, I started taking steps to move out of my comfort zone and move on with the rest of my life.  I wrote about these steps in Personal Blogs #6-8.  Clare will be in my heart forever, and I still have occasional painful moments such as when listening to some songs or watching sensitive scenes on TV or in a movie.  But, despite some of those teary moments, I have found happiness again ... my “new normal.”

Writing has always helped me clarify my thinking.  From the onset of Clare’s illness, writing articles for publication helped me organize my thoughts so I could ask doctors better questions, suggest ways to more effectively treat Clare, and try to improve overall communication with doctors.  I wrote about these issues while trying to make life easier for Clare, and for me ... but I also hoped that my articles might be helpful to other AD caregivers.

Similarly, when Clare entered an assistant living residence, psychiatric hospital, and finally into a nursing home I wrote about what I observed ... AD patient care, programs, personnel, and communication.  I wrote articles to suggest changes to improve the quality of life for people with AD in such settings.  I hoped that articles published in medical journals would help doctors and long-term care administrators re-think how they were diagnosing, treating, and caring for people with AD, and how they treated and communicated with their caregivers. 

I wrote op-ed columns for major newspapers to try to raise public awareness of AD and highlight the need for more government funding of AD research.  And last year I started writing Personal Blog columns, posted only on this website, describing how I was dealing with life as an AD widower.

Writing has always been very cathartic for me.  Describing what Clare was experiencing and how we were feeling helped me cope better during our AD journey.  Writing about my lengthy bereavement in Personal Blog columns helped me eventually realize that I would only find happiness again if I forced myself to move out of my comfort zone.

After my 100th article was published in August, I recognized that to continue moving on I needed to stop writing about AD.  When I posted Personal Blog #8 in September, I wasn’t sure if I would post additional blogs in the future.  I can now say, however, that I expect this Personal Blog #9 to be my final posting.  Now that I have moved out of my comfort zone and moved on with the rest of my life, I do not think I will have anything new to write about that could be helpful to others.

I will continue to monitor this site so it remains a viable resource for the 1000+ visitors who come here each month, and I will continue responding to emails from AD caregivers and doctors.  I will also continue removing spam each month because a few visitors sometimes post comments about “spiritual healers” whose “magic potions” can cure AD.

Being an AD spouse caregiver is a role I wish for no one, and life as an AD widow or widower is not easy.  Wherever you are on your AD journey, please make time to care for yourself.  Best wishes for a happy and healthy new year.

Wednesday, September 12, 2018

Personal Blog #8 ... Finding Continued Happiness ... 9-12-18


It’s been nearly 2½ years, but I’ve still been having difficulty fulfilling Clare’s final wish for me ... she wanted me to find “continued happiness” after she was gone.

Psychologists have written about how the loss of a husband or wife in an extremely close marriage can be particularly difficult for the surviving spouse.  I can count on the fingers of one hand the number of married couples I’ve known with a marriage as strong as ours.  Clare and I were truly each other’s best friend and we needed no one else to be with to make each day special. 

Three months ago, in Personal Blog #7, I described 4 steps I had taken to move out of my comfort zone to try to find more happiness in my life.  I had hoped that joining a nighttime bowling league, facilitating another AD spouse support group, joining an online dating site, and starting a relationship with another woman might bring me greater happiness and less loneliness.  Some of these steps were successful, some were not, additional new steps were taken, and collectively these steps have resulted in a happier and less lonely life.

I am continuing to bowl in my Wednesday afternoon and Thursday evening leagues, but I quit my Friday morning league to join a Friday evening league, and I also joined a Monday evening league.  I’m already enjoying my new evening leagues and am pleased to be spending fewer nights, alone, at home.


When asked to serve as a volunteer support group facilitator, I was told that the Association wanted to take advantage of my AD experience and knowledge base, and I truly looked forward to helping caregivers.  But after being told that I could not support caregivers the way I felt they should be supported, I chose to step down as facilitator.  Running afoul of the Association’s “no contact/no advice” rules seemed especially ironic since the Association had praised me for my AD opinions and advice when given as a featured speaker at their annual caregiver conference. 

In retrospect, however, leaving my facilitator role may have been another positive step.  I decided that my 100th AD article, published last month by Annals of Long-Term Care, will be my last AD article.  I have also decided that I will no longer give AD presentations to caregivers, doctors or medical students.  If I am no longer facilitating AD spouse caregiver support groups, and no longer writing or speaking about AD, maybe I will be able to move on more easily with my new life. 


Joining an internet dating site was very valuable because it helped me clarify the kind of relationship I was seeking.  Women on that site were looking for love in long-term serious relationships, but that is not what I want.  I’m not looking to “fall in love” again.  In my heart, I still am ... and always will be ... deeply in love with and married to Clare.  I also know that I can never be in a relationship where I could possibly end up as a 24/7 caregiver ... I couldn’t handle that again.  My time on that dating site reinforced that all I want going forward is a “friend with moderate benefits” ... a special woman to be with several times a month to enjoy companionship and a moderate physical relationship ... but nothing more serious than that.

I am taking other new steps to move out of my comfort zone.  For example, I’ve signed up for a “Lifelong Learning Lecture Series” given at my local community center.  I’ve also started flying again, for the first time in nearly 10 years, and already have tickets for future flights to visit with family and friends.  In addition, I’m now checking out some river cruises for summer travel.

In my April/2016 piece in The Huffington Post, “Not Ready to Move On,” posted only hours before Clare died, I wrote that “I want to ... and need to ... maintain my emotional connection with Clare for as long as possible.  If that delays my moving on, so be it.”  When I wrote that article, despite my strong love for Clare, I didn’t think it would take me too long to move on after her death.  After all, I thought, I had already been grieving for nearly three years, living alone, feeling more widowed than married.

But I was wrong.  Very wrong.  Clare’s death hit me like a ton of bricks.  Despite my years of “anticipated grief,” accepting her loss was painful beyond words.

In “Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers” (AFA Care Quarterly, Spring/2017) I wrote about how Katy Perry’s song, “By the Grace of God,” got me through my darkest moments before and after Clare died.  As I battled with depression, anger, guilt, and other emotions, there were many days when I felt as if I were down on the floor and out for the count, questioning if I even wanted to continue living.  Perry’s words in that song ... “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay” ... could have been describing me.  Words such as “running on empty, so out of gas,” perfectly expressed how I felt.  But Perry also sang, “I am not giving up” ... and those words always won out.

Someone I love very much recently shared with me these words attributed to Rosemary Kennedy: “It has been said, 'time heals all wounds.' I do not agree. The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.”

Clare’s last few years of life, but especially her death, left me with deep painful wounds and frequent periods of overwhelming sadness and tears.  Recent successful steps to move out of my comfort zone, however, have greatly lessened that pain.  I feel happier, and less lonely, than I’ve felt in quite a few years.  Maybe now I will be lucky enough to fulfill Clare’s final wish for me ... continued happiness.

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Note to readers:  I haven’t decided yet if I will post new Personal Blogs on this website.  If interested, please check back in 3-6 months to see if I have written more about moving on with my life.  As always, should you want to comment on what I’ve written and would like me to respond, please email me at acvann@optonline.net.

Tuesday, August 21, 2018

Geriatric Medicine Training For LTC Physicians



Doctors employed by nursing facilities are often internists by training. According to the American College of Physicians (ACP), internists “are recognized as experts in diagnosis, in treatment of chronic illness, and in health promotion and disease prevention…equipped to deal with whatever problem a patient brings—no matter how common or rare, or how simple or complex.” ACP also notes that internists “are specially trained to solve puzzling diagnostic problems and can handle severe chronic illnesses and situations where several different illnesses may strike at the same time.”1
That seems to be a description of precisely the type of doctor who should be serving in facilities with large numbers of aging adults. According to ACP, “some internists choose to take additional training to ‘subspecialize’ in a more focused area of internal medicine. Subspecialty training (often called a “fellowship”) usually requires an additional one to three years beyond the basic three year internal medicine residency.” 
Geriatric medicine would seem to be the area of specialized training that would best prepare a doctor for working in a long-term care facilities (LTCFs), as geriatric medicine focuses on training and skills to treat older adults—the largest resident population in LTCFs. Internists who continue their education with advanced training in geriatric medicine “specialize in the diagnosis, treatment, and prevention of disease and disability in older adults.” Such doctors are concerned with “health problems that frequently affect older adults, such as pain, falls, memory loss, incontinence (involuntary loss of urine), and medication side effects. Another important aspect of geriatric medicine is evaluating an older individual’s ability to care for him- or herself (eg, prepare and eat meals, bathe, dress).”2
When my late wife, Clare, entered an assisted-living facility (ALF), she was in moderate stages of Alzheimer disease (AD) and placed in the ALF’s lockdown dementia unit. We were told that 2 internists came several days each week, and one would be assigned to serve as Clare’s primary care physician. I soon discovered, however, that these doctors had very little background or experience with AD patients.
If Clare’s ALF doctor had advance training in geriatric medicine, perhaps I would not have had to personally raise concerns so often with ALF administrators about Clare’s care. A doctor with geriatric care specialization would probably have observed that Clare needed greater assistance with such activities as eating, bathing, and dressing and, hopefully, would have directed ALF staff to give more attention to these areas of need.
When Clare eventually entered a nursing home (NH), her NH doctor was an internist with a specialization in cardiology. Whenever I wanted to discuss AD medication changes, I spoke with the visiting psychiatrist who then spoke with the NH internist on my behalf. Cardiopulmonary arrest was listed on Clare’s death certificate as the immediate cause of her death. In the section on her death certificate where doctors can list “other significant conditions contributing to death but not related to the cause of death,” the NH doctor made no mention of her 10-year battle with AD. A doctor with additional training in geriatric medicine likely would have noted that AD was a significant condition contributing to her death.
Internists definitely seem to be the type of doctor best suited for diagnosing and treating the aging population in LTC settings. However, internists with a specialization in geriatric medicine should be the gold standard, especially if the LTC’s aging population includes people with AD or other forms of dementia. 
References
1. American College of Physicians (ACP). About Internal Medicine. Acponline.org website. https://www.acponline.org/about-acp/about-internal-medicine. Accessed August 20, 2018.
2. HealthCommunities. What is a geriatric physician? HealthCommunities.com website. http://www.healthcommunities.com/health-care-providers/what-is-a-geriatrician.shtml. Published November 13, 2008. Updated September 18, 2015. Accessed August 20, 2018.

This is Dr. Vann's last Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his many other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.
Published in Annals of Long-Term Care, online only, on 8/22/18.  Access at https://www.managedhealthcareconnect.com/blog/geriatric-medicine-training-ltc-physicians

Tuesday, June 26, 2018

Communication Between LTC Doctors and Caregivers



As a former Alzheimer disease (AD) spouse caregiver, I had interactions with doctors caring for my late wife in the dementia units of 2 different long-term care (LTC) settings: an assisted living facility (ALF) and a nursing home (NH). My wife received excellent care in both facilities.  However, her care would have been even better had doctors utilized my experience as her caregiver more often. The below situations are illustrative of this.

Prior to her LTC placement, my wife was seen regularly by a neurologist to oversee medication for anxiety. After placement in her ALF, I expected the ALF doctor to take over that responsibility. However, I had to continue taking her to a neurologist because the LTC doctors were not very familiar with anxiety disorder medications. The 2 doctors who came to my wife’s ALF once a week were both internists. ALFs with separate, sizable lockdown units for dementia residents (my wife’s unit had 32 dementia residents) should have a geriatric psychiatrist or neurologist onsite at least once a month—or at least available to the ALF nurse, social worker, and ALF doctor on a regular ongoing basis. 

While I was traveling for a few days, Clare woke up at the ALF and was unable to walk. My daughter brought her to the hospital in a wheelchair. Upon entry to the hospital, Clare had been taking quetiapine, alprazolam, sertraline, lorazepam, haloperidol, venlafaxine, and divalproex sodium all to help control her anxiety. In my absence, my daughter insisted that the doctors stop all that medication as they tried to determine the cause of her sudden inability to walk. I immediately drove home. By the 2nd day at the hospital, Clare was able to walk again, first with a walker and then just with me holding her hand. The doctor said he couldn’t explain why she stopped walking suddenly, but because her anxiety level was still very high, he was going to place her back on all her anti-anxiety meds by the end of that week.  But Clare was discharged to the NH before the end of the week for continued rehab, and the NH doctor refused to place her back on her anti-anxiety meds.

The NH doctor available for dementia patients in my wife’s NH was also an internist. I happened to see the doctor at the charge nurse’s desk at the exact moment my wife was admitted to the NH. I asked if we could meet to discuss my wife’s medical history, but he said he already read her history, so there was no need to meet. I also said I’d like to update him on her recent history with medications she had been taking until a brief hospitalization that same week, but, again, the doctor said there was no need to meet because he already had that information as well.  

Two days after my wife’s admission, I started receiving calls from the NH about her anxiety issues. The next day, I asked the dementia unit charge nurse to see a list of my wife’s medications and discovered that the NH doctor had not placed her back on any of her anti-anxiety medications. I asked why, and the nurse said she’d call me back after speaking with the doctor. The next day, the nurse called me saying that it was because my wife had not been taking those medications during a hospitalization that occurred between her ALF discharge and NH admission. I told the charge nurse that her neurologist had only temporarily removed those medications to see if they were possibly causing other issues that led to her hospitalization and that the neurologist planned to place her back on those medications upon hospital discharge.

I then asked to speak with their on-call psychiatrist. The next day he returned my call. We spoke briefly, and he agreed that my wife should be placed back on at least some of her anti-anxiety medications right away. As soon as my wife resumed taking those medications, many of her anxiety issues disappeared. Within weeks, after more conversations with the psychiatrist, more anti-anxiety medications were added back. Had the NH internist taken a few minutes to discuss Clare's medication history with me on the day she was admitted, my wife wouldn’t have had to suffer needlessly for so long.

LTC doctors ought to understand that some AD caregivers can provide a great deal of helpful information. Some AD caregivers are extremely well-informed about the medications taken by their loved ones and well-versed in their medical history.  

I would like to suggest one simple practice to all LTC physicians: whenever new AD residents or patients are admitted to your facilities, schedule appointments with their primary caregivers as soon as possible. Brief 10-minute meetings with them to review medical histories and medications may provide you with helpful information and insights that do not appear in any of your medical charts or reports, records that can often be incomplete or inaccurate.

Dr Vann writes a bi-monthly Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, June 26, 2018.  Access at:   https://www.managedhealthcareconnect.com/blog/communication-between-ltc-doctors-and-caregivers

Sunday, June 3, 2018

Personal Blog #7 ... New Steps Forward ... 6-3-18


Three months ago, in Personal Blog #6, I wrote that I hoped to add more happiness to my life and reduce some of my loneliness.  I had already moved on enough after Clare’s death to be able to describe my life as “okay,” but I wanted to see if I could do better than okay and, for that to happen, I needed to move out of my “comfort zone.” 

Since posting PB#6, I have taken four major steps to move out of my comfort zone to seek that “continued happiness” which Clare had wanted for me after she passed.  One relatively easy change was “trading” one of my daytime bowling leagues for one in the evening.  Starting in September when the winter bowling leagues re-start, I will continue to bowl in my noon and 4 p.m. leagues each week  but, instead of continuing to bowl in a 9:30 a.m. league, I will now bowl in a 7 p.m. league.  Forcing myself to get out of my house one evening every week to do something I enjoy, while also socializing with others instead of sitting home like a couch potato, should be helpful. 

A second relatively easy step was to agree to get out of my house two more times each month to help others.  For the past six months I have been facilitating a monthly Alzheimer’s Association support group for caregivers of spouses with younger onset Alzheimer’s disease (AD).  This month I will also begin facilitating a support group meeting twice a month for caregivers of spouses with moderate to advanced stages of AD.

The next two steps I took to move out of my comfort zone were not as easy. My third step was to register on an internet dating site and I posted the following “introductory message” on that site: “After 2 years of widowhood following a wonderful marriage, I'm no longer dealing with daily sadness or depression and am enjoying life again.  I am hoping to be lucky enough to find a special woman who can add to my happiness and reduce some of my loneliness while I do the same for her.”

I also posted a longer personal profile and each week I received notifications from interested women.  But after four or five weeks, I still had not established contact with any of them because of one phrase common to their profiles.  Each woman was seeking a “serious relationship.”  But did I also want a new serious relationship ... or  did I want something else?

I re-read my site introduction and profile over and over.  I thought back to my one experience with a “singles group” at my local community center several months after Clare died.  At a certain point, the social worker leading the “singles over 60” group, about 40 women and 10 men, asked us to be seated and briefly introduce ourselves.  As part of our introductions, we were asked to discuss the relationships we were looking for.

When it was my turn to speak, I described my fairy tale marriage, my ten years as an AD spouse caregiver, and how I was now pretty much set in my ways after living by myself for so many years.  I said that I was looking for a woman to be with several times a month to enjoy companionship and a physical relationship, but nothing much more serious than that.  I said that I did not want another serious relationship, and that I was probably looking more for a “friend with benefits.”

As soon as I had finished speaking, several men and women criticized my remarks.  They said that I needed to be willing to compromise with what a woman may want in a new relationship.  I responded by saying that, with all due respect, at my age I felt no need to compromise.  If I couldn’t find a woman to enjoy the kind of relationship I wanted, then I simply would not enter into a new relationship.

Recalling that experience, I realized why I had not yet initiated contact with any women on that internet site.  I edited my profile, writing in part: “Now that I have been on this site for about a month, I'm realizing that I am not looking for a long-term ‘serious relationship.’  I am looking for a ‘friend with benefits,’ a woman to be with just several times a month instead of a woman to be with more often or on a daily basis.  Just being honest!”

I felt much better after posting that revised profile.  It was now even more clear to me that what I had been missing most in my life in recent years was the physical relationship with a woman.  A friend with benefits is exactly what I needed, and wanted, to add happiness to my life and reduce my loneliness. 

One morning, while having breakfast with a very good female friend, she asked if I had found someone yet to be my friend with benefits.  I said no.  She then surprised me by saying that she would be interested in being my friend with benefits.  This is a woman whom I have loved deeply as a very close friend for more than 25 years.  My initial reaction was something like, “Are you serious?  Are you telling me that you would really consider this?”

I asked her to take the next week to think more carefully about entering such a new relationship, and the next time we got together we discussed my expectations more fully.  I told her that I would be ecstatic if she would become my friend with benefits, but I wanted to be sure that she wanted this new relationship as much as I did.  She said she did, so we decided to give it a try.  The first time we got together to begin our new relationship, we agreed to take things very slowly, but our cuddling felt so natural ... as if it were meant to be. We were both very pleased with our first experience in this new relationship, and we have tried to cuddle together for an hour or two every week.  

I never did respond to anyone I met on that online dating service during 3 months, and I have not renewed my subscription.  But had I not taken that step to sign on, I may never have known that I was correct in thinking that to find continued happiness I only needed a friend with benefits.  Clare will always be with me in my heart, but I can now finally say that I have moved on with the rest of my life.

By moving out of my comfort zone, my life is no longer just “okay.”  For the first time in many, many years, I can now honestly say that I am happy and my life is good.

Friday, May 4, 2018

Support Groups for Alzheimer's Widows and Widowers


When my wife was diagnosed with Alzheimer's disease (AD), I joined a caregiver support group exclusively for AD spouses. Everyone in my group, expertly led by an outstanding social worker, was dealing with similar issues. We were all caring for spouses who were slowly dying of AD. We discussed our feelings and shared our concerns, receiving emotional support as well as helpful suggestions from the social worker and other members in our group. Our spouses were at different stages of AD, and the major daily caregiver stressors were different for each of us. But despite these differences, whenever one spouse voiced a fear or concern, heads nodded in silence. When that person had finished, others commented aloud. Everyone in our group easily related to what others in our group were saying. We were all AD spouse caregivers. We all "got it."
My wife passed away in 2016 after her 10-year battle with AD. It would have been helpful for me to be able to join a different type of AD spouse support group at that time—one exclusively for AD widows and widowers. Such a group could have provided me with continued emotional support and helpful suggestions from others who were experiencing a similar grieving process. However, I could not find any support groups specifically for AD spouse widows and widowers at that time.
I conducted a thorough search, but I was unable to find even one support group specifically for AD widows and widowers anywhere in my vicinity (Long Island). The New York State Health Department estimates that more than 400,000 residents of New York have AD, with about 50,000 or more living on Long Island. Yet even with such a large population of people with AD, no support groups existed on Long Island in 2016 to specifically help AD spouse widows and widowers deal with their bereavement.
Fortunately, I have come a long way in moving on with the rest of my life since my wife passed away, but I also know that I still have a way to go. However, a 2018 Google search continued to reveal no bereavement support group anywhere on Long Island that is specifically for AD widows and widowers. And that is a shame.
To their collective credit, during this past decade both the Long Island Alzheimer's Foundation and the Long Island branch of the Alzheimer's Association have increased the number of support groups devoted to AD caregivers, including specific groups exclusively for AD spouse caregivers. Several Long Island hospitals, assisted living facilities, and nursing homes also now provide or host caregiver support groups for AD spouses. This growth in AD spouse support groups is admirable.
But, still, there are no specific support groups to assist AD spouses after their loved ones have passed on and their caregiving days are over ... and this needs to change.
"Generic" support groups for widows and widowers can be very helpful to many widows and widowers. But in the generic widow/widower's support group I joined shortly after my wife died, my experiences of many years as an AD spouse caregiver did not resonate with others in my group. The other widows and widowers could simply not relate to my experiences as a long-term caregiver over a 10-year period.
Widowed AD spouses have survived an experience that is different from most other widowed spouses. Widows and widowers grieving after the sudden and unexpected death of a spouse, or after the death of a spouse who had poor health for several months or even a few years prior to death, have gone through an experience quite different than that of a grieving AD spouse. AD widows and widowers have often been grieving for five or 10 years prior to their loved one's actual death. AD spouses have often watched their loved ones decline and suffer for many years due to this horribly debilitating and degenerative disease for which there is no effective means of treatment or cure.
Caring for loved ones slowly but surely losing their cognitive skills, losing their memories, losing the ability to feed or clothe themselves, losing the ability to clean or toilet themselves, losing the ability to walk or talk—these experiences over many years are intensely emotionally painful. Many AD spouse caregivers have also had to deal with dramatic personality changes in their loved ones that often cause some to act aggressively towards them, only adding to their intense emotional pain.
In a generic support group, members may be able to easily recall and speak about loving memories of the many "good times" shared with their recently deceased spouses. But even such a simple task may be hard for AD spouses, who may have to think back 10 or 15 years to recall pleasant memories of happier times. For many AD spouses, the stress of daily caregiving over so many years may flood their minds with so many images of the bad times that images of those good times may not be so easy to recall.
Even though it has been two years since my wife died, when I close my eyes I see her sitting slumped over in a wheelchair in a nursing home, not as the vibrant woman she once was. I see her as frail, unable to walk, unable to swallow food, unwilling to even want to continue to live. I see a woman who no longer recognized who I was, who had no concept that we were married, and no longer knew my name or that I was her husband. These are horrible memories to have, and the other members of my generic support group for widows and widowers could not relate to this at all.
Our country's population is continuing to age, and the number of people with AD is continuing to grow. Hopefully there will eventually be recognition by organizations working with AD caregivers that there is a need for support groups that specifically meet the needs of AD widows and widowers.
Most support groups are facilitated by social workers. Perhaps greater awareness and recognition by social workers of the need for targeted support groups for AD widows and widowers can help make such groups happen sooner rather than later.
— Allan S. Vann, EdD, MS, is a retired public school principal writing to advocate for increased awareness of Alzheimer's disease and to stimulate greater research funding, improve diagnosis and treatment for people with Alzheimer's, and enhance the lives of fellow caregivers.
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