Friday, January 17, 2020

Surviving a Partner's Alzheimer's Disease -- Losing Twice


I lost my wife, Clare, to Alzheimer’s disease (AD) in the spring of 2016 and with 2020 now here I am still struggling to fully move on with the rest of my life. I did not expect to have such a long struggle because I had already felt widowed for several years before Clare died. She was confused all the time, she was increasingly unable to express herself in words, she no longer knew who I was, and we had been living apart. Her mental faculties were gone, and “Clare wasn’t Clare” anymore. I was grieving that loss every day.
But even after Clare’s mind was gone, I could still be with her. I held her hands, hugged her tightly, kissed her, and told her how much I loved her. Usually there was no response, sometimes I received a smile, and on those increasingly rare days when she would say a few words in response, her words were often, “Can you please find my husband?” Clare was “there” with me, yet really “not there” with me at all.
With no cure for AD, once your spouse or partner receives an AD diagnosis, it can become a death sentence. The unanswered question is how much quality time you may still have together. I started observing AD symptoms when Clare was 60 and her AD diagnosis was confirmed a few years later. After her diagnosis, we were only able to enjoy a few more good years together.
A fellow AD spouse, who was also still experiencing similar sadness and loss after the death of her husband, noted that losing someone you love to AD really means having to deal with death twice—first when you lose their mind, and then again when you lose their body.
That is a profound way to look at loss due to AD, especially for a surviving spouse who had been in a long and loving marriage. Once unable to have even the most basic conversations with an AD partner, the survivor begins grieving an almost unbearable loss. No longer being able to share the highs and lows of daily life, and no longer being able to share the joys of common memories is a difficult loss to face. In a very real way, once unable to communicate with your AD partner, the survivor may begin to mourn just as though their AD partner had already died.
However, surviving spouses and partners can still be with their loved one after their minds are gone. Even with no reactions or responses, survivors can continue to hold their hands, hug them, kiss them, and tell their AD partners they love them. Even when no longer able to talk with them, survivors can still talk to them.
Being able to hold a beloved AD partner in your arms while you talk to them, even when there is no verbal or physical reaction of any kind, can provide at least a small degree of emotional comfort for the survivor. Physical contact can, even if only for fleeting moments, help resurrect cherished memories that may counter some of those enormous feelings of daily sadness that never seem to leave.
A few months or years later, when a person loses their partner’s body, the survivor begins grieving painful loss a second time. Moving on after the loss of an AD partner’s physical presence, while still mourning the earlier loss of their mind, is a lot to move on from.
Social workers who facilitate support groups for those who have lost a partner to AD must understand that survivors may experience death differently than those in other support groups.
With Alzheimer’s, loved ones may experience a double loss.
— Allan S. Vann, EdD, a widowed spouse/caregiver, has written many articles to help AD caregivers, including several that have been published in Social Work Today. Caregivers can read copies of all of his published articles on Vann’s website at www.allansvann.blogspot.com.


Published in Social Work Today, online only .  Access at: https://www.socialworktoday.com/news/enews_0120_1.shtml

Wednesday, January 8, 2020

Personal Blog #13 ... Dementia Patients in Hospital Emergency Departments


I have written several articles describing how poorly my late wife, a victim of early onset Alzheimer’s disease (AD), was treated whenever she was in a hospital Emergency Department (ED).  My ED experiences as her AD spouse caregiver were uniformly poor.  I always found nurses to be extremely competent and empathetic.  However, I almost always found doctors to be ignorant about how to communicate with her effectively, let alone how to diagnose and treat her effectively.  In addition, many times her doctors, and technicians, routinely refused my offers to provide information that would help them diagnose and treat her more effectively.  As a result, my wife suffered needlessly during each visit.

In my March/April 2018 article in Annals of Long-Term Care, I wrote a response to an article published in that journal’s previous issue about the American Geriatrics Society’s formation of the Geriatrics Emergency Department Collaborative (GEDC), a consortium of some of our country’s leading health systems and medical societies, “to help improve emergency care for our nation’s older adults.”  I expressed my appreciation for this initiative, but I also noted that there was no mention of the GEDC seeking input from the caregivers of dementia patients … the very people who could offer firsthand observations of patient care, and who could suggest possible recommendations for improved practice based upon their experiences.
The GEDC’s stated goal is to improve “healthcare outcomes” for older people in EDs. 

Their website (https://gedcollaborative.com/about/) states, “We are committed to making change through the education of individuals, and hospital-wide initiatives that create sustainable improvements in practice at all levels.”  The GEDC has now applied for a five year grant through the NIH (National Institutes of Health) and NIA (National Institute of Aging) “to support the development of a collaborative research and resource network to synergize the expertise, skills, and resources of investigators within the geriatric emergency medicine and Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) research communities, to identify and address research gaps towards optimizing recognition and emergency care of older adults with AD/ADRD.”

Last month I was honored to be asked to serve on the Geriatric Emergency care Applied Research (GEAR 2.0) Task Force that will implement this grant if it is funded.  In my role as a former AD spouse caregiver, I will be able to provide a voice for dementia caregivers and their loved ones, and to describe what it’s like for dementia patients and their caregivers in an ED.  I will also serve as a dementia patient advocate to provide a voice for recommending improved medical training for ED personnel, and improved ED practices and procedures.

Should you have suggestions for improving patient care in hospital EDs, please email them to me at acvann@optonline.net and I will try to include them in my recommendations to the Task Force.  Meanwhile, I will provide periodic updates of the status of this grant proposal on this website.  It’s been almost four years since I was in an ED with my wife, and I would like to think that doctors have made some progress in learning how to communicate effectively with patients experiencing moderate or severe stages of AD or some other form of dementia.  I would also like to think that doctors have made some progress in learning how to effectively examine and diagnose dementia patients brought to their ED.  Sadly, dementia caregivers tell me this is still not happening. 

Please let me know if you have suggestions for ED improvement based upon your own personal experiences as a dementia caregiver.  This grant may be a genuine opportunity for caregivers to make a difference … to really affect the training of current and future ED doctors and improve the procedures followed in EDs across the country.  Let’s make the most of it!




Tuesday, December 10, 2019

Personal Blog #12 … More Data on Aducanumab … 12/10/19



According to an article published by The Associated Press on December 5, 2019 Biogen’s scientists issued a preliminary report on their new data analysis of their Alzheimer’s disease (AD) medication, aducanumab.  This is the medication that was in a Phase III clinical trial that was ended in March due to poor results but, after new data came in after the trial ended, was then promoted by Biogen as being effective.

Biogen’s presentation received very mixed reactions from scientists at an Alzheimer’s conference in San Diego, California on 12/5/19.  According to the A.P. article, scientists were “sharply divided over whether there’s enough evidence of effectiveness for the medicine to warrant federal approval.”  The new data released that day indicated that “the drug made only a very small difference in thinking skills in one study and none in the other.”  A.P. reports that independent experts said that “the new analyses were done on partial results, and with methods not agreed upon at the outset, making any conclusion unreliable.”

Some scientists cheered the new results and some judged them insignificant.  “Questions arose about the size of any benefit.  The drug did not reverse decline and it only slowed the rate of it compared to the placebo group by 22% in one study.  Yet that meant a difference in only 0.39 on an 18-point score of thinking skills.”

As I’ve written many times before, the currently FDA-approved AD medications have been shown to be effective for only about 50% of the people who take them, and then only for up to a year or two at most.  But, sadly, once doctors place their AD patients on these expensive medications, doctors are reluctant to ever remove their patients from these meds …  even though there is absolutely zero research to indicate that these meds have been or still may still be effective.  The result is that too many caregivers and AD patients continue to pay a lot of money year after year for AD meds that I refer to as “expensive bottles of hope” when that money could be much better used for day care, respite opportunities, or to help pay for home or institutional care.

I sincerely hope that, if this is the best new data Biogen can present to the FDA in support of their application to market aducanumab, the FDA resoundingly says no to marketing at this point.  If Biogen scientists think their data suggests promise, then let them conduct new year-long Phase III clinical trials with proper supervision.  That is the only way to demonstrate effectiveness.  Scoring one point more on a test of thinking skills is no reason to add yet another expensive bottle of hope to the market.

Saturday, November 2, 2019

Personal Blog #11 ... Is Aducanumab an Effective Treatment for Early Stage Alzheimer's? ... 11/2/19


Of the top 10 causes of death in this country, Alzheimer’s disease (AD) is the only one with no effective means of prevention, treatment or cure. Any pharmaceutical or biotech company that discovers medication to effectively treat, let alone prevent or cure AD, will help millions of people … and make millions of dollars.  We often see reports of successful Phase I or Phase II clinical trials demonstrating positive effects of new experimental AD medications, but we have yet to see reports of effectiveness in a Phase III clinical trial.  The National Institutes of Health (NIH) describes the different phases of clinical trials as follows:  (Note: the NIH website may be accessed at … https://www.nia.nih.gov/health/what-are-clinical-trials-and-studies.)

"Clinical trials advance through four phases to test a treatment, find the appropriate dosage, and look for side effects. If, after the first three phases, researchers find a drug or other intervention to be safe and effective, the FDA approves it for clinical use and continues to monitor its effects.
Clinical trials of drugs are usually described based on their phase. The FDA typically requires Phase I, II, and III trials to be conducted to determine if the drug can be approved for use.
  • Phase I trial tests an experimental treatment on a small group of often healthy people (20 to 80) to judge its safety and side effects and to find the correct drug dosage.
  • Phase II trial uses more people (100 to 300). While the emphasis in Phase I is on safety, the emphasis in Phase II is on effectiveness. This phase aims to obtain preliminary data on whether the drug works in people who have a certain disease or condition. These trials also continue to study safety, including short-term side effects. This phase can last several years.
  • Phase III trial gathers more information about safety and effectiveness, studying different populations and different dosages, using the drug in combination with other drugs. The number of subjects usually ranges from several hundred to about 3,000 people. If the FDA agrees that the trial results are positive, it will approve the experimental drug or device.
Phase IV trial for drugs or devices takes place after the FDA approves their use. A device or drug's effectiveness and safety are monitored in large, diverse populations. Sometimes, the side effects of a drug may not become clear until more people have taken it over a longer period of time.)"

Biogen, a major biotech company, ended its Phase III clinical trial with a new experimental medication, aducanumab, on March 21, 2019 because testing results indicated that it was ineffective.  So how is one to interpret Biogen’s announcement on October 22, 2019, that it will ask the FDA to approve aducanumab as a new treatment for early stages of AD? 

On their website, www.biogenalzheimers.com, Biogen states that after their study ended in March, “a new analysis of a larger dataset” showed that … “Patients who received aducanumab experienced significant benefits (my underlining) on measures of cognition and function such as memory, orientation, and language.  Patients also experienced benefits on activities of daily living including conducting personal finances, performing household chores such as cleaning, shopping, and doing laundry, and independently traveling out of the home.”  Biogen plans to submit their new data to the FDA in early 2020 to seek approval to market aducanumab.  

If the FDA determines that Biogen’s data support aducanumab as an effective treatment to slow the effects of AD, that would be a major step forward and offer tremendous hope to people with AD and their caregivers.  But before I get too excited, I want to see that results reported as “significant benefits” are what I refer to as “real world” benefits.  Reports of “statistically significant” results on paper/pencil tests measuring cognition, or of brain scans or biomarkers measuring a decrease in amyloid beta protein in the brain, are always welcome. 
However, such measures do not necessarily translate into more effective patient functioning at home or in a facility.  Answering 1 or 2 more questions correctly on a cognitive test or remembering 1 or 2 more words on a memory test may yield “statistically significant” results but may not always mean more effective functioning in the real world.  However, medication resulting in significant improvement for people with AD for 6-12 months or longer as they deal with activities of daily living or who can continue to go shopping or travel independently outside the home … to me, that would be a major game changer.  Such benefits would allow the person with AD to enjoy a much better quality of life for a much longer period of time. 

If Biogen follows through on its current plans, this will the first time that a company has ever ended a “failed” Phase III clinical trial of an experimental AD medication … then re-analyzed additional data … then claimed that this additional data support effectiveness of its medication … and then requested submission to FDA for approval to market.  After reviewing the research findings submitted by Biogen, the FDA can approve the medication, reject the medication, or find some evidence of effectiveness … but not conclusive enough evidence to warrant approval … and require additional clinical trials.

As a former AD spouse caregiver, I hope that the FDA will concur that aducanumab can be that major AD game changer after reviewing data submitted by Biogen.  But, until the FDA makes a decision, I will remain skeptical.  Biogen announced that it plans to report their new data and seek approval from the FDA in “early” 2020.  Stay tuned!

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.