I received this wonderful story of care from Donna. She gave permission for me to post it here and welcomes any supportive emails (you can send by clicking on “Donna” above) or you may leave a public comment below.
I’ve taken blogger’s prerogative and bolded some of my favorite phrases.
Before Vascular Dementia & Alzheimer’s
Tim and I had been together for 5 years. He was a vibrant, interesting and interested man, a retired engineer. I was a social worker/psychotherapist and had a degree in theology. We met at a meditation weekend in 1994. Our first date was birding in a park on the Escarpment. Our second date was at the symphony. He was 25 years older than myself (I was 48), and he was inviting me into life. We travelled in an old Dodge Ram mobile home, twice to the west coast, once to the east coast. We attended church, took part in a spiritual inquiry/meditation group, and canoed in the Humber River. Our lives were bright with nature, the exploration of the inner spiritual world, psychotherapy, and music and the arts.
In 1994, I had just moved in with my bright, still active, 89 year old mother, to accompany her for the last 3 years of her life. My dad had died 2 years earlier, from what I now believe was Alzheimer’s. My parents’ lives were woven together, and that structure along with family involvement, so supported Dad’s decline, that I don’t think that we ever really recognized that he had Alzheimer’s disease, rather just saw him as declining as he aged.
Tim would speak of his mother having had dementia at the end of her life, but she lived in Calgary and he hadn’t really been part of it.
Tim had a lot of love for me. He told me one day that he was terrified to tell me that he loved me more than he had ever loved anyone, in case I would ever leave him. I understood how much it had taken for him to admit this vulnerability of his heart. It set the bar for our love, for a vulnerable intimacy.
The other piece of this was that I had severe Sciatica for about 3 months. He was attentive, supportive, and patient with my sleepless nights, and multiple treatment appointments. I was understanding about being accompanied in illness.
Surrendering to the Journey
In 1999, I realized that he was beginning to lose some mental capacity. When I finally broached the topic, he admitted that he thought he was having difficulty. We made an appointment for an assessment with a Memory Clinic.
in the meantime, at a Mindfulness meditation weekend we made a time with the teacher, Shinzen Young to talk about this beginning loss. Shinzen spoke with us out of his wisdom, including the story being with of a Japanese monk with Alzheimer’s giving a brilliant dharma talk, and then the monk having no memory of the talk after. Shinzen also spoke of his experience of being part of an in-hospital study on the effect of no thyroid, and his own experience of losing the capacity of his mind for a period of time. But what stayed with us most was his compassion, and also his blessing. For he said to us that we would be entering the realm of “no mind” and we would be entering it together. It shifted the context for us into a sacred journey.
Within a month, Tim had a stroke, and although he recovered his physical capacity, he had lost mental capacity for managing mechanical details like turning on the radio, financial details, along with his driver’s license. Everything became more vague.
His daughters and son moved forward to help with things. Resettling us in a more manageable apartment. Taking over his finances.
Social life and Activities
We remained active. We did the things we had always done. Symphony, car rides, takeout hamburgers at Humber Bay park. The canoe moved into storage.
I realized that the memory of how to do things was in his body when he could no longer find it in his mind. He remained as desirous as ever to go for walks, to explore nature.
We continued to attend church. He had good memories of attending church as a child with his family, and church continued to be a good place to go. The congregation supported us, welcomed the new factor of dementia, and made place for us. At the end, the community was there for us, the church was full, and the choir sang at at his funeral.
I signed him up for a Day Care program with Etobicoke Services for Seniors three days a week. He could never understand why he was there. He knew he wasn’t staff because they weren’t paying him. He pondered it and decided that he must be a volunteer, and when we went to the Christmas luncheon for everyone, when they invited the volunteers to stand and be celebrated, he gladly stood too.
Other groups continued to be important. The spirituality/inquiry meditation group, a stroke club, family gatherings, his family and mine. I was working on my Doctorate in Ministry at Trinity College, and I often took him to classes, meetings and services there. In all these places there was support and welcome. People would approach and talk with him, make sure he had food to eat. I felt a circle of care around us, and I felt that I was not alone.
One of the important social outings for us was going to see the doctor. We saw our wonderful GP regularly, the Urologist, and the doctor at the Memory Clinic. (He didn’t like the specialist in dementia, thought he didn’t care about him!) I’m not sure if the doctors understood how important those visits were for us, and I have often thought that it would have been good if they had served tea.
I remembered the point of view of the “dignity of risk” held by workers in the field of developmentally challenged adults. I would let him step out when he insisted, with some monitoring from a distance. Once when he was impatient with my slowness in getting ready to go out, he left our 9th floor apartment. I watched him from the balcony. When he looked like he was going to take off, I called down to him. In a few short moments, there was someone from the 4th floor, and someone from the 2nd floor, people who knew us, who were also calling to him, telling him that I would be down in a few minutes and to wait for me. Another community of care!
Feeling a little stir-crazy in January (he was to die in May), with the support of his daughters, I signed us up for a weekend therapy workshop in Calgary in a therapeutic modality that I had been trained in. We flew out there, stayed in a hotel, and attended the workshop… or rather, I attended and he accompanied me. Again this group welcomed him in. He had always loved workshops and thought it was just fine to be sitting there through the training. We had been twice before to Calgary, the town of his childhood and adolescence, and we took time to tour around. Although he had lost much mental capacity and memory…he had lost the memory of his first marriage and his children… he could still name houses of his childhood friends
When we returned from Calgary, in February, friends of ours invited us to dinner. It was a wonderful moment, a roast beef dinner and wine and fire in the fireplace. And this Tim of mine, often not knowing even who I was, rose to the occasion. He was gregarious, loved the meal, remembering all of his social skills (He had been a company executive and had loved to entertain.) and if we hadn’t known him, might not have been aware that he was in advanced dementia. I was so reminded of how the memory of who we are is contained not just in our own minds, but in the minds of others, and in the patterns of our holding environments.
Tim became increasingly dependent on me, on my presence. He would relax when I was near.
Sex had always been an excellent part of our relationship. And that continued for a while. However as the dementia progressed, it seemed that his memory of the sexual act and how to perform it was lost. We would start with cuddling and some foreplay, and then it would just kind of peter out, and he would roll over in bed and go to sleep. Rats!
He began to forget who I was. He would ask me where the person in the other room was. That person had been me earlier sitting at my computer. There were multiple me’s. I would explain to him that he and I were partners and had been living together for several years. He always found it interesting and would look at me with curiosity.
One evening, he asked me where I lived and where was I going to sleep that night. I explained that I lived here with him and that I slept in the same bed with him. He paused, looked at me, I could see him working hard to figure out this new information. A slow smile spread across his face. I asked him if this was ok. and he said slyly, “Why yes, yes of course!”
I began to realize that for him we were strangers, and each day, he had to fall in love with me all over again. It made our time together into an ongoing courtship, nothing taken for granted. I shared with him my realization that each time he awoke, that he didn’t know who would be there. I asked him if this was true, and he said it was. In the moment he seemed to be relieved that I understood this. I began to understand that it would be my presence and his presence that would have to recognize each other. I began a practice of being present to him with the start of each interaction that we would have… just taking that moment to allow recognition to be there.
Besides the loss of the conscious memory of “us,” (see in the section above), there were other interesting unfoldments.
I had in my mind that he would be losing the structure of history and ego… the things that made him who he was… and began to look for ways in which younger parts of him were emerging.
One night he came into the bedroom and woke me up. (He was often up puttering in the middle of the night.) He was very excited and delighted, and wanted me to come and see something he had done. He showed me the words he had written on the bathroom door in magic marker: “Science experiment in progress. Do not enter.”
He opened the door to the bathroom and showed me two bowls there with small turds/bowel movements in them. He was as pleased as punch. Remembering the developmental stages, I was suitably impressed, oohed and ahhed over them, and then explained as one might to a young child that eventually they would have to go into the toilet, but he could leave them there until the morning if he wanted, or flush them down the toilet now.
He thought a moment, and then said he could flush them down now. Which he did, and we retired to bed together, he apparently satisfied, and me chuckling to myself.
He had some paranoia for a period. At one point he woke me up to show me the knives he had on his bedside table in case anybody invaded us.
I realized that since he didn’t recognize me all the time, he might at some point decide that I was an invader. I hid all the sharp knives the next day. I didn’t want to come to, up above my dead body, looking down, and going “Oops! Should have hid those knives.”
One day he was in a panic. He was frantic. He wanted us to get out of the apartment, out of the building. Three men were coming to murder him. I tried to reason with him, to persuade him that it was actually safe. But he was not to be persuaded. I paused to think/sense what it must be like to be so sure that you were about to be murdered. We were just inside the front door of our apartment apparently waiting for murderers to come through the door at any moment. In that moment I got his terror. Almost immediately I felt this power enter me, and this rage. I was equally sure that I would let no one hurt him. Is this the mother’s protective instinct? All I knew was that no one and no thing would touch him. Thus empowered, I looked at him and said in a strong trembling voice, a voice I didn’t even recognize, that no one, not even the powers of hell would get through this door, nothing would harm him. It was a declaration to the universe. And in that moment it was the truth.
He paused, looked at me, relaxed and said “Okay.”, went into the living room and sat down. He never again displayed any paranoia.
Care & Medical Choices
In the beginning the care was a continuation of our relationship. When it became more challenging, someone gave me the book Gentlecare, and that made a huge difference for me. There were two pieces of wisdom that I absorbed.
One was that the care should be prosthetic, that it should exactly match the need of the moment… an attuned care.
The second was that everything became “an activity”. I had a belief that only the formal programs and activities mattered. I came to understand that everything was an “activity”. It wasn’t that I was getting him ready to go to a formal program or activity, but the getting ready was “an activity” too. All of life was a chance to be held, enriched, enjoyed etc. Getting ready to go to the Stroke Program was as important and delightful and intimate and significant as actually being there.
Sometimes I would wonder if I could do one more thing, one more new piece of care. When the dentist wanted me to brush Tim’s teeth it felt like one thing too many. However it turned out that he liked it. He would sit in a lazy boy chair, and I would work from behind flossing and then brushing his teeth. It turned out that I liked it too. One more moment of intimacy!
Prostate Cancer: Tim was diagnosed with prostate cancer in 1994, shortly after meeting me. With the support of his doctor, he chose the wait-and-see option, because he wanted to maintain our sexual relationship.
By 2000 the cancer had metastasized to his hip. He never had any pain except when sitting on a hard chair, so we began to carry a pillow with us where ever he went.
Then in 2001 he required a permanent urinary catheter. I asked the doctor to teach me how to do the care. I learned how to insert a catheter, irrigate the bladder when blood clots began to gather in the bladder. And if that didn’t work, we would go to emergency at St Joe’s. Toward the end, we would often be in emergency 2 or 3 nights a week. They would recognize us coming down the hall, and often usher us into a room to be attended to.
Sleep deprivation was becoming an issue for me. I often paid a friend in the building, a retired nurse, to come and stay with him for an hour or two, while I went down to her apartment and would fall into a deep sleep on her couch.
Tim never got it that he had cancer. He would feel bladder spasms and would head down the hall to use the bathroom. In the bathroom, he would roar out “What’s this?” when he discovered the catheter. I would follow him into the bathroom, explain that he had cancer… “CANCER!? ” he would roar. Then I would explain that yes he had cancer, and the catheter was because the cancer was blocking the urethra, and that was making him feel like he had to go to the bathroom. But the doctor had said that the cancer was very slow growing. “Oh,” he said, apparently satisfied.
In the end, it was the cancer that carried him off, and I was grateful.
The spirituality was an important part of our journey… groups we belonged to, the church we went to. At the end, the church came to us. Visits from the ministers. Communion at home. We did the Anglican Compline prayers together at night, those ancient prayers for comfort and safety through the night.
Hildegard’s Von Bingen’s soaring medieval monophonic mystical chants played often. “Turn it up,” he shouted one day. “it’s completely absorbing me!”
Maybe a week before he died I read a poem to him that delighted me, no expectation that he would understand it or be able to take it in. But he was a birder and loved the raptors, particularly the Peregrine falcon.
A Tethered Falcon
My heart sits on the Arm of God
Like a tethered falcon.
I am now blessedly crazed
Because my Master’s Astounding Effulgence
Is in constant view.
My piercing eyes,
Which have searched every world
For Tenderness and Love,
Now lock on the Royal Target –
The Wild Holy One
Whose Beauty illuminates Existence.
My soul endures a magnificent longing.
I am a tethered falcon
WIth great wings and sharp talons poised,
Every sinew taut, life a Sacred Bow,
Quivering at the edge of my Self
And Eternal Freedom,
Though still held in check
By a miraculous
Divine Golden Cord.
I am waiting for You to free me
Into Your mind
And Infinite Being.
I am pleading in absolute helplessness
To hear, finally, your Words of Grace:
Fly! Fly into Me!
I Heard God Laughing: Renderings of Hafiz;
by Daniel Ladinsky
“Oh, that’s wonderful,” he sighed.. It seems that he got it precisely in its depth.
He was bed ridden for the last couple of months. Home palliative care accompanied us.
Toward the end, I borrowed a massage table and often laid down beside him, his hospital bed raised to the same level as the massage table.
The afternoon he died, we fell asleep facing each other, holding hands, covered by one blanket. We awoke, and then still there together, still holding hands, he died.
Thanks for sharing this, Donna.