A Journey into Dementia – The Absence of Presence

Rabbi Address’s note: Dr. Robert Lester is a physician in Canada. He gave the following paper at a workshop at the Union for Reform Judaism Biennial convention in Toronto in November 2009.

The session looked at Caring Community and Sacred Aging issues that present themselves to our congregations and how congregation can respond. The following is a moving and touching example of the MY STORY idea that we began a few months ago.

I first wrote this approximately 3 years ago after watching my wife of 47 years cradle a doll while at the same time not recognizing her youngest daughter’s voice on the telephone. As terrible as that seemed then, I was not prepared for the rapid progression that has ensued since that time. Whenever I review these musings, I am shocked at how much I have to change them because of her rapid decline. I want to stress that this is our family’s journey, & although there may be similar touch points, no two journeys are the same.

My wife’s name is Judy.  She was a teacher early in her career and then went back to get her master’s in education, and subsequently trained to be a psychotherapist, a career she pursued successfully for many years.

Our journey began in the late fall of 2002.  An incidental contact with a neurologist who was an expert in dementia led to an investigation of Judy’s mental health. At the time Judy was 62 and although in retrospect the onset was likely insidious over the previous few years, she was functioning at a level that most people would consider normal. Judy agreed to undergo testing and after a number of scans, MRIs, and psychological tests it became clear that she was experiencing early dementia – a form of FTD known as progressive aphasia, a condition in which she progressively loses the capacity to speak & to recognize common objects or people. Simplistically, I’ve been told that Alzheimer’s disease robs people of their memory while FTD robs them of their personality. There are no effective drugs for FTD and as frustrating as it is, all her medications have been discontinued. For all intents and purposes we are simply sitting back and watching her progressive deterioration.

My immediate reaction to the diagnosis was denial.  This could not be happening to us. Judy was so bright and vibrant.  Certainly she would not progress at a rate that would affect our life for many years.  My state of denial was reinforced by how calmly my wife took the news. In retrospect it was likely that her disease had advanced enough that the true impact of the diagnosis never registered with her. My denial & her laisse faire attitude resulted in us skipping a very important portion of our journey. We never discussed while she was cognitively functioning what her desires were as the disease progressed. How long did she want to stay at home? Did she want to be kept alive at all costs? Did she want to be tube fed if she could no longer swallow? What expectations did she have of me & the rest of the family when she no longer recognized us? This was probably the biggest error I made & it has forced me & the children to make decisions based on what we think she might have wanted. Her lack of input into these important choices has been a great source of angst for me.

As her disease progressed, denial was replaced with anger.  All the years of work and planning for retirement — our trips, our sharing getting old together, our enjoyment of our children and grandchildren all going up in smoke.  As the Judy I knew is gradually but inexorably disappearing, despair and sadness have supplanted anger. More recently I have been able to move to a state of hope & regain some clarity around our future. I now hope I can provide an environment which will be safe for Judy while still recognizing the need for my life to continue. Although I refer to these emotional stages as sequential, I often move back & forth among the various states.

Everybody I have spoken to has made the same two suggestions: surround yourself with a support network and look after yourself.  Both are easier said than done.

Where would my support network come from?

Perhaps Judy’s colleagues of many years, people trained in empathy, would rally around her and provide her with support.  We did not receive one call.

Maybe our friends, some of over 50 years, would help. Originally, with some exceptions, I was disappointed in their apparent lack of response. On further reflection, I’ve come to realize that although they care, they are uncertain of what help to offer, and perhaps are uncomfortable dealing with a person suffering from dementia. The stigma of mental illness somehow makes it more difficult for them to respond in the same way they would if their friend had a physical illness. I often ponder on what it is about dementia that frightens people and makes them want to shun even those we love and respect once the diagnosis has been made

Certainly I could rely on siblings.  Although there have been increased efforts recently, they too have to some degree distanced themselves perhaps for the very same reasons as our friends. Judy is the oldest of her siblings and I’m sure the others all experience discomfort seeing her in her present state.

Although all three of my children have been very supportive, our son and youngest daughter live in the United States which clearly limits their capacity to support their mother and me. However they are always responsive and caring and do their very best to help out.  Nevertheless, the brunt of this has fallen on our eldest daughter. She has provided us with incredible ongoing help.  I will be eternally grateful for all the arrangements and support she has given to Judy and me over the past 7 years- no request goes unanswered.

Beyond that support has come from unexpected sources. I have been astounded by the unbelievable commitment of Judy’s caregivers.  Maria, Judy’s primary caregiver is Portuguese and doesn’t speak English.  Nevertheless, from the first moment she and Judy met an instant bond developed.  She daily showers Judy with love and provides her with unbelievable care. More recently Babeth has become Judy’s caregiver on weekends. She too has been marvelous.

What about looking after yourself so that you don’t “burnout”? There is no doubt that I had tended to bury myself in my work as a form of escape. Now that I have retired, I’m striving to find alternative activities to keep myself physically & mentally active.  However, I still often experience tremendous guilt whenever I’m having a good time. How can I be enjoying myself when my wife is in her present state?

My most difficult times are related to social situations. I feel jealous as I listen to couples conversing at restaurants, or parties, or discussing their past trips or their plans for the future.  I feel tremendous loneliness with a loss of intimacy and adult companionship.  There is no one to talk to about issues past, present, or future.  Although I am certain that I’m not depressed, I’d be less than honest if I did not admit to shedding a tear or two in the privacy of my bedroom as I lie awake thinking about what is happening.  Among the jumble of thoughts that torment me during these waking hours is the predominant feeling of being cheated out of our future.  All of our plans for growing old together have been shattered.

Almost 2 years ago I retired after a lifetime of work.  Much of the excitement that I once felt about this transition has been replaced by apprehension and uncertainty.  How long will we be together?  Have I saved enough to provide for the unexpected cost of her care?  It presently is costing me close to $70000 per year to look after her. Over the past year or so I’ve struggled to deal with several questions. How will I feel when she requires care beyond what I can provide at home?  What will it be like to be on my own after almost 50 years of marriage?  Eventually, I recognized that it was inevitable that the time would come when I could no longer care for her at home, & I made application to Baycrest, a Jewish long term care facility in Toronto.  However, I waited in dread for the day when the call would come that there was a bed available. Am I deserting her? Have I forgotten that she is still my wife and the mother of my children? At the end of November 2008, the call did come and although I had made the decision months ago that this was the right move, now that reality was at hand my heart seemed to stop when the call came & I had to agonize over the decision yet again. Ultimately she did move to Baycrest in late Nov 2008.

Although Baycrest is a world class organization, the vast majority of their clients have either family or private caregivers to support the limited number of Baycrest staff. I recently spoke to another husband who comes in several hours every day to look after his wife. With tears in his eyes, he said he realized his obligation but the days were getting longer & he was getting so tired. His comments reinforced for me the tremendous burden that many family member caregivers suffer.

It is clear that care giving doesn’t just involve financial costs. It has physical, social and emotional consequences as well. Stress arising from the time and energy demands of care giving can cause significant health problems for the caregiver such as changes in sleep patterns, headaches, loss of energy, and fatigue. Care giving also can interfere with caregivers’ social and recreational activities, leading to increased emotional and physical stress and decreased satisfaction with life. The psychological impact can include depression, guilt, worry, anxiety, and loneliness.

I always thought that the worst thing that could happen would be to lose a loved one to death.  I now realize that as painful as that must be, there is an end and to some degree life can go on.  For me watching Judy deteriorate slowly over several years seems so much worse. Death seems to be occurring in an incremental way.  She can no longer do the simplest tasks. Judy was an excellent athlete but now is confined to a wheel chair. She can no longer write nor speak making communication virtually impossible.  Judy was a very proud woman and extremely aware of her appearance at all times.  I know she would be mortified by her weight gain, her need to wear diapers, and more recently a requirement to be fed by another person.  She is progressively retreating into her own world and no longer knows who I am nor does she recognize her children or grandchildren. For the most part, she sits with her eyes closed & does not engage in any activities. She really just exists. Worst of all, when I look into her eyes and see that dull glazed look, I realize the light is slowly going out.  Perhaps the only good thing is that I believe and fervently hope that she is unaware of what is happening to her. Yet in some way I pray that she feels comforted by my touch and the love that surrounds her. As difficult as it is, it is important for us to remember the Judy she was – wife, mother, sister, friend, successful professional. We must strive to respect her for both who she was and importantly who she is now.

More recently, I was introduced to a concept known as ambiguous loss which I have found strangely liberating. Perhaps it is because I now have a label and feel comforted that someone has actually studied the situation. Although all losses are touched with ambiguity those who suffer ambiguous loss, losses without finality or resolution, bear a particular and challenging burden. One form of ambiguous loss involves physical presence and psychological absence. Such ambiguous loss can occur in dementia which takes a loved one’s mind or memory away. In this type of ambiguous loss, the person you care about is psychologically absent – that is, emotionally and cognitively missing. As there is no end to ambiguous loss, it freezes the grief process and prevents closure; it tends to paralyze functioning. Tensions build up as experiencing ambiguous loss can cause conflicting thoughts and feelings. We may dread the death of a loved one who is hopelessly ill while at the same time longing for closure and an end to waiting. Such feelings inevitably cause guilt. As family members of patients with dementia, we can be both angry and sad: angry at the demands of caregiving while at the same time sad because we are loosing a loved one. Furthermore there are no community sanctioned farewell rituals such as funerals or shivas to comfort family members experiencing the loss of their loved one to dementia. Of all losses experienced in personal relationships, ambiguous loss remains the most devastating because it remains unclear and indeterminate. This old English nursery rhyme encapsulates the distressing feeling of uncertainty:

As I was walking up the stair,

I met a man who was not there.

He was not there again today.

Oh, how I wish he’d go away.

This demonstrates the absurdity of not being certain about a person’s absence or presence. We all hunger for certainty. Even sure knowledge of death may be more welcome than a continuation of doubt. Taken together it is little wonder that those of us who experience and live with an ambiguous loss may find it hard to understand our situation, have difficulty in coping and moving ahead with our lives without professional counseling, love and support.

I have had the opportunity to speak to a number of people who have spouses with dementia. Their ways of coping have ranged from abandonment of their loved one to depression & withdrawal. I’ve chosen what I believe is a middle path. I now know more then ever that at the same time that I must provide Judy with the best care possible and continue to love her, I must also move forward with my life. In the last few months, although I continue to visit Judy almost daily, I have begun to socialize more & have returned to part time work.

As I reflect on what I thought might go wrong as we aged, I realize that dementia never crossed my mind.  As the population ages, our journey will be shared by millions of others. In fact the world wide incidence of the most common type of dementia – Alzheimer’s disease – is predict to more than triple with over 80 million sufferers world wide by 2040

In conclusion, I would like to share some lessons learned:

  1. Remember & be thankful for the good times.
  2. Try to involve your loved one early on in the important choices that

you will have to make

  1. Be patient with your loved one & yourself.
  2. Be patient with family & friends.
  3. Learn to ask for help.
  4. Make the important decisions well in advance of the need when emotions don’t cloud rational decision making
  5. Appreciate the support you get from whatever source.
  6. Find 1 or 2 people you can confide in and perhaps on occasion share a good cry.
  7. Try to balance the needs of your loved one with your own.
  8. Manage the emotional rollercoaster that is inevitable – fear, anger, sadness, loss, guilt are all natural & expected responses.

Life isn’t about how to survive the storm, but how to dance in the rain.

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