Just recently, after much consideration and with regret, I made the difficult decision to move my partner/husband of 25 years, David, into a cognitive care residence here in Montreal. Why? Because his Alzheimer’s disease had made life more difficult for the both of us. I saw it as the only viable option.
I’d like to devote this long post to David, the man I love, and give you a snapshot of him, his Alzheimer’s diagnosis and how the disease affected us, leading to this decision of mine.
Our story
I would need a whole other post to talk about David’s full life and our quarter of a century together but, for the sake of this post, the bare bones of our relationship are that:
- In 1998, at the ages of 49, David and I met here in Montreal
- Where? Believe it or not, we met at an aerobics class at the YMCA. Excuse me, while I burst into song:
- “It’s fun to stay at the Y.M.C.A.
- They have everything for young men to enjoy
- You can hang out with all the boys!”
- Where? Believe it or not, we met at an aerobics class at the YMCA. Excuse me, while I burst into song:
- We started dating and, within 18 months, we’d moved into a home we’d bought
- In 2010, we got married here in Montreal – both then aged 60
We retired around 2012 and luckily, as it turns out, we spent the next six years enjoying our retired lives together exploring new activities and travelling several times a year far and wide.
I’m very happy that we were able to celebrate our retirements together so fully, because in ….
2016 – Things started to change
When David was only 66, I started noticing that he was not remembering things that we had just talked about. Mid-sentence, he’d sometimes struggle to find the next word. As well, he was starting to have trouble using his laptop, including mixing up his passwords. It was taking him longer to make decisions. At first, we both put it all down to aging and how we all have “senior moments”. Don’t we all forget our passwords?!
2017 – Lots of Tests
However, David must have been concerned about these lapses because, sometime in early 2017, without telling me, he took the initiative to go to his family doctor and get checked out. I wasn’t at that meeting so I’m not sure exactly what happened. Afterwards, David did tell me that his GP had promptly referred him to a neurologist whom he knew at the McGill Centre for Studies in Aging here in Montreal. Dr. Gauthier was that specialist and, as I later learned, very well known and respected in the field of Alzheimer’s research.
A few months later, I went to David’s first appointment with Dr. Gauthier where I watched David undergo the “MoCA” test which you may have heard of. The Montreal Cognitive Assessment (MoCA) is a brief screening tool of 30 questions which assesses memory and other cognitive processes to detect dementia. It was invented by a doctor here in Montreal in the 1990s and is apparently now used throughout the world as a screening tool.
If I remember correctly, David scored 26 out of 30 which is “normal”, but just barely. Dr Gauthier said that David might be experiencing some memory loss and sent David for a wide series of tests. They included a PET Scan, a lumbar puncture, blood tests, neuropsych and memory tests along with an MRI. Together, these tests can provide a definitive diagnosis.
2018 – The Diagnosis
In February of 2018, we nervously returned for a consultation with Dr. Gauthier to get the results of the tests. He landed us with the devastating news that the tests indicated that David did, indeed, have Alzheimer’s. Because he was “only” 68, he was young to get this diagnosis as it’s usually diagnosed later in life. But it wasn’t “early-onset” Alzheimer’s either. Just the regular kind.
Whatever the case, we now both knew that both of our lives would be heading in new directions.
I thought it would be a good idea that we discuss together the best way to approach this radical new development, so I asked David what I could do to help him during this voyage and how we should approach it. He said,
“Well, if I get difficult – just shoot me”.
“I can’t do that. It’s not legal”, I replied, utterly shattered by the thought.
“Then just lock me up. I don’t want to talk about it. I just want to take it a day at a time”.
I tried other avenues to approach this topic but didn’t get anywhere, so I eventually just let it drop. I came to realize that David didn’t really want to talk about his uncertain future and I respected his wish.
He also told me not to tell others about his diagnosis either – at least not yet. He didn’t want people to treat him or see him differently. That request of his did lead to some difficulties over the next year or so as it began to be clear to family, friends and neighbours that David just wasn’t the same.
What would I have done?
If I had received a diagnosis of Alzheimer’s, I think I would have approached it in a different way. I would have wanted to discuss plans for the future, looking at the various options about what help I might need. As well, I’d want to talk about my feelings about it all.
But, having lived with David for almost 20 years at that time, I’d learned that we were different in these ways and that was fine. He was more of a private person, unwilling to bother others. Also, I didn’t want to argue with him, especially given it was he who had received the cataclysmic news, not I.
At least David wasn’t denying the diagnosis. I later came to realize that some people just deny they have Alzheimer’s, which adds extra layers of difficulty.
However, I found a diary!
Just last month, when I was sorting through things in David’s desk, I came across a diary of his that I had never seen before. I was surprised because he had never kept a diary but here one was. It had only eight entries in it from January to March 2018 but each entry was a thoughtful look at how he should approach his Alzheimer’s and how he felt about it, his life – and me.
Here David was having this internal dialogue with himself about his future. I was incredibly touched to read it and discover how thoughtful it was. However, as I pondered it, I couldn’t help but also feel sad. I had invited him to have this discussion with me and here he was having it just with himself.
But I’m going to readjust my thinking and say that, from some of the things he says in the diary, a very likely reason he was keeping his thoughts to himself was because he didn’t want to worry or bother me. “Don’t want to be a burden”.
The diary is so touching and I would love to write a post about it at some point and show its contents but I won’t as that would be an invasion of his privacy. As I have said, he was a very private person.
Why did David have Alzheimer’s?
The question that instantly arose for me, as it would for anyone, was – why did David get landed with this terrible disease? His whole life had been a testament to what you need to do to NOT get this disease. That’s because, as you probably know, we’ve been told that the best way to lessen your chances of getting Alzheimer’s was to keep intellectually, physically and socially active. And David had certainly been doing all of that.
To illustrate my point, below I have outlined some of David’s activities and achievements in medicine and sports all of which helped to slow down but, unfortunately, not prevent Alzheimer’s from grabbing hold of him.
Cognitive/Intellectual Stimulation
- David’s professional career certainly had been an intellectually and cognitively demanding one. During the 1970s, he did his medical training at the U. of Toronto and his pediatric residency at the University of Alberta and McGill.
- After completing his residency, he enjoyed working for a decade in a pediatric practice in Peterborough, Ontario where he got involved in the local community
- In the late 80s, he moved back to Montreal because he was recruited to become the Medical Director of the pediatric emergency department (ER) at the Montreal Children’s Hospital (MCH) remaining in that post for over a decade
- After stepping down as Director around 2002, David continued to work in the ER for 10 more years up until his retirement, handling dozens of emergencies each shift
- Since the Children’s was a teaching hospital and part of the McGill University Health Centre, David was not only a clinician but also undertook research, organized conferences, sat on many committees, taught courses, gave lectures and trained residents
- The MCH Foundation has told me that David also acted as an energetic ambassador for the hospital as well, helping to raise money
- I could list the multiple awards he received over his 35 year career as a pediatrician and emergentologist but suffice to say here – there were many of them!
You get my point that all of these activities stretched David’s brain to the limit. Below are some photos of David in action!
Below is a funny letter that David’s pediatric residents, who admired him greatly, wrote to him
Physical Stimulation
Figure Skating
- During his teenage years, David was a champion figure skater.
- At the age of 18, David competed for Canada in the 1968 Winter Olympic Games in Grenoble in the men’s singles event, finishing 16th in the world.
- After the Olympics, he competed in three World Championships: Geneva (1968), Colorado Springs (1969) and Ljubljana (1970), finishing 10th, 10th and 11th in the world.
- In 1970, David won the Canadian Men’s Singles Figure Skating Championship, even beating Toller Cranston – of whom Canadians of a certain generation will certainly know. He did all of this while doing his medical training!
Marathon Running
- After David hung up his skates to concentrate on his medical training and practice, he took up running in a big way. He competed in dozens of marathons through the 80s and 90s, including running the famous Boston Marathon eight times where his best time was 2 hours 28 minutes in 1988 and his “worst” time was 2 hours and 55 minutes in 1996. Yes, I know. Stunning.
- I’m happy to add here that David was the one who encouraged me to run to keep fit. I had never run before but I loved him for getting me moving, even though I didn’t always love running! The most I managed was running a 10km race myself a few times, including at the Sydney Gay Games in 2002.
By the way, if you know David, you know that he is a very humble person who never bragged about all of these achievements of his. But here I am bragging. Can you blame me? They’re remarkable.
My point, however, is that, despite engaging and succeeding in all the activities that are meant to significantly reduce your chances of getting Alzheimer’s, David still succumbed. Why?!
Genes and Cognitive Resilience
The answer is in David’s genes. Sadly, David’s father lived with Alzheimer’s for about the last ten years of his life and it seems highly likely that those genes were passed on to David. So no amount of cognitive or physical stimulation throughout David’s life could have knocked the genes off their predestined path.
However, despite the large amount of amyloid plaques and neurofibrillary tangles (the abnormal structures in the brain that indicate Alzheimer’s disease) covering David’s brain revealed by the scans, Dr. Gauthier said that David was actually functioning better than others who had a similar amount of plaques and tangles in their brains. He called that “cognitive resilience” meaning that, because of the stimulation his brain had received over his lifetime, it was able to continue to function better than might be expected. That was because the brain had the ability to find alternative neural pathways despite the attempts by the disease to block them.
Therefore David’s Alzheimer’s had been slowed by his lifestyle, but not stopped.
Taking part in research
After diagnosing David, Dr. Gauthier asked both of us to volunteer to become subjects in a major research project under him run through the McGill Centre for Studies in Aging called the The Translational Biomarkers in Aging and Dementia (TRIAD) cohort. We agreed to join and we both went through three annual cycles of PET Scans, MRI’s, lumbar punctures, a suite of neuropsych/cognitive tests and blood tests to help the researchers hopefully move closer to discovering a way to combat this devastating disease. It was time consuming but we did get paid for the large amount of time we put into it.
I was asked to be part of a film publicizing this Triad Cohort project and here is my screenshot!
Memory Tests
The suite of neuropsych/cognitive tests that were part of this research included a three hour series of memory tests which I found stressful, even with my somewhat normal cognitive skills. The final time that David did those tests he came out of the testing room crying. I imagine that the tests were a constant devastating reminder of his loss of cognitive skills. Tears were a normal response. I was angry that they still put him through the tests given his declining cognitive capacities.
What did I do once David was diagnosed?
Although David didn’t want to make many changes in preparation for this inevitable new direction, my personality demanded that I should “do something”.
My first step was to see what kinds of services were available to people living with Alzheimer’s and their caregivers. So what better place to start than the Alzheimer’s Society of Greater Montreal. I signed up for their “Introduction to Dementia for Caregivers” course of eight weekly classes that taught us about the disease and the road ahead for us. Very helpful.
A strong and helpful message in this course was that we needed to remember that it was essential that we, as caregivers, had to look after ourselves if we were going to have enough energy to care for our loved ones. I did feel that this “caregivers commandment” was often easier said than done. However I did try to keep it in mind by keeping involved in my own activities as much as possible.
My Support Group
Many of us from that initial class joined a support group of other caregivers looking after spouses or parents with Alzheimer’s. Although we were at different stages of the disease, we faced similar issues and we could compare strategies and teach each other what help was available. We traded stories, cried, laughed and supported each other. Six years later, I’m still part of that group. Because David has now moved into a residence, I “graduated” to become one of the “senior” members of the group.
Gathering information
I researched the topic intensely and tried to learn as much as I could about the disease and how I could best support David – and myself – on this journey. I went to lectures, read books, dove into the internet and saturated myself with information.
Enough is enough
Somewhat to my surprise, though, a year or two in this research, I reached an information saturation point. Information overload. I was exhausted and I told myself that enough is enough. I cut back on my reading and seminar going but I kept to my support group.
Accessing Social and Community Services
My information gathering did, however, teach me about the various services that were out there to help David and me. I was surprised that there were quite a large number of supports available. However it can take time and perseverance and patience to get it all in place. Not to mention being nice to the service providers and getting them to like David and me. Since David is adorable, that wasn’t too difficult.
Over time, these were the services that we chose to access:
From the Alzheimer’s Society of Montreal:
- Activity Days for David at their centre providing David with a variety of weekly activities and me with respite
- Arts-Link workshops at Montreal’s Museum of Fine Arts for both David and me
- Weekly online yoga sessions
- Visits to our home by a recreational therapist
- One on one counselling for me
From the CLSC (Montreal’s social services):
Within a few weeks after a referral from our doctor, a very kind social worker came to our home to assess both David and my needs and tell us about what help could be provided. What a difference that started to make!
- David was given access to another Activity Day at a local Centre de jour, making for three activity days a week
- I was able to hire Émile and Stephane as personal support workers (PSW’s) to come to our home to work with David and give me respite. They were paid by the CLSC (called “Cheque emploi service”)
- We got subsidized cleaning services at home through “Chiffon & Plumeau“
- I got a week of respite through an organization called “Baluchon“. A wonderful woman came to our home to live with and care for David while I took a break and visited friends and family in Toronto
- The city provided “Transport Adapté” whereby taxis came to get David to his Activity Days and back
2019-2023 – Five Years of “Normalcy”
From the time of David’s diagnosis, up until around the end of the pandemic in 2023, David and I were able to continue to live, despite his Alzheimer’s, relatively normal lives. With the support we were getting (see above), we were able to continue to do many of the activities that we had always been doing: workouts in the gym, (online during the pandemic), dinners with friends, long walks and short runs, annual trips to a family cottage in Ontario and many bike rides with the McGill Retirees Cycling Group.
David was still capable of taking walks on his own and not getting lost. In case there was a problem, I began following him on my phone using the “Find My” app connected to his phone. Over time, his walks became shorter but he always found his way home.
From 2012 and up until the pandemic struck, he had been a volunteer at the Montreal-based charity, Dans La Rue, delivering coffee and warmth to street kids.
As time went on, David’s ability to communicate faltered, slowly but surely. As his vocabulary dropped away, by 2022, he could hardly form even half a sentence and was frustrated by that as he couldn’t find words he was looking for.
However, in contrast, his non-verbal communication skills were perfect. He kept eye contact with whoever was speaking and he smiled or laughed when everyone else did – whether he understood or not.
Coming Out
David eventually agreed that he “come out” to our friends and acknowledge the elephant in the room – which was that he was living with Alzheimer’s. That made things much easier for all of us and all our friends who were and continue to be very supportive.
At home, David was always ready and willing to help with household tasks. Over time, though, I watched him lose one skill after another, bit by bit. At first, he became frustrated and annoyed with himself when, for example, he couldn’t figure out how to make coffee in our drip machine anymore. But later he became less aware of the capabilities he was losing. At first I would try to teach him how to do what he was trying to do but I discovered that once a skill had gone, it was lost and impossible to relearn.
Over time, David arrived at the point where he didn’t know what he didn’t know. That, in my opinion, made things easier for him. His frustration with himself became less.
For his personal hygiene, David could still bathe and shave himself but I needed to be there the whole time to “cue” him on what to do and to supervise each step.
David continually needed more guidance from me on how to do virtually everything. I always wanted to encourage him to keep as active and engaged as possible but it sometimes became more frustrating for me to supervise him than it was for me to simply do the task myself.
I tried to remind myself to admire and acknowledge what David could STILL do rather than mourn what he couldn’t do anymore.
One was a true blessing in all this was that, despite a slow decline in David’s capacities, his adorable, sweet, gentle, kind temperament never once wavered.
2024 – Things Started Changing Faster
Late in 2023 and into 2024, things started to change. David began to experience what I would at first call his “dizzy spells”. I later learned that they were, in effect, anxiety attacks with varying combinations of sadness, depression and, of course, anxiety. A short nap, though, would quickly return him to his normal self, so I didn’t think too much about it.
However, these anxiety episodes began to get longer (several hours or more) and more frequent. And a nap sometimes didn’t snap him out of it. They could occur at any time of the day but most frequently they occurred at sundown which might have perhaps been because of the infamous “sundowning” effect.
As well, David also started to have his episodes not just with me at home but also at his Activity Days. The staff tried to manage them but the episodes became, understandably, too much for them. I had to withdraw him from those activities which he had enjoyed so much. The side effect was that my respite days also disappeared.
As the summer of 2024 progressed, the now almost daily episodes started to include David resisting care. He started to say “no” to me helping him with daily tasks, including toileting and bathing . These bursts of anger were so unlike him. His happy and cheerful face still appeared but it was less and less frequent.
At dinners with friends, he began to lose his “perfect” non-verbal skills that I mentioned above. He sat slumped at the table not listening which certainly wasn’t like his old self.
Another element to all this is that David began to find it harder to walk even short distances when we used to be able to walk for miles; very strange for someone with such an athletic background. We got to the point where he could hardly cross the park in our neighbourhood for a cup of coffee without needing to stop and rest – and cry.
We talked to his doctors about all this and we were prescribed different medications but none seemed to break the patterns. And some even made things worse. For anyone with cognitive issues, I learned that the medications may not work in the same way as they would with those without cognitive issues.
And then there was The Wandering Incident
- One characteristic of Alzheimer’s is that those living with the disease can “wander” off and, because their memory has weakened, they can get disoriented and not be able to find their way home. David had never shown any signs of wandering off, so I hadn’t been particularly worried much about that happening. I made sure that he wore his Medic-Alert bracelet, though, just in case. He’d stopped being able to use his smart phone, so he also stopped carrying it with him.
- However, around the middle of 2023, I had decided not to ever leave David alone in the house. I was more worried about his ability to deal with any problems that might arise in the home than I was about him wandering off. Therefore, whenever I left the house without David, I would make sure that a hired caregiver of ours would stay with him until I returned.
- One evening during June of 2024, I went to a dinner party with friends and, as usual, Émile, our caregiver, came to stay with David. The two of them were watching TV at the back of the house and David said he wanted to lay down so he went to the bedroom to do so. He got up shortly after and asked Émile where I was. Émile said that I was out and would return shortly. David left the room presumably to go back to bed.
- Instead, we now know that that was when he walked out the unlocked front door.
- Émile went to check on David a few minutes later and found that he wasn’t in bed and quickly came to the realization he must have left the house. What an awful feeling that must have been. He looked outside and saw no one. He immediately phoned me. I was on my way home and couldn’t believe what he told me.
- In a panic, I drove around the neighbourhood hoping to catch a glimpse as he couldn’t have gone far. But there are so many directions he could have headed and I didn’t know where to look.
- I called 911. Within 10 minutes, a male and a female cop were knocking at our front door. I have to say that the efficiency with which they started the search for David was quite impressive. As with lost children, they know that the faster a search begins, the more likely the lost person will be found.
- They came and went several times over the next few hours as they gathered more information. A description of David was sent to the police cars in the area as well as to the media. Here are the screenshots from my phone that popped up with the morning news. Something I never thought I’d ever see. I was worried sick but there was nothing more I could do now.
- David was not found until early the next morning when, I later learned, he had somehow turned up at the Montreal Neurological Hospital. A passerby had noticed that he seemed disoriented and alerted the receptionist inside. The receptionist asked his name and David was able to give it. She found his name in the system as he and I had gone there years earlier to do several tests for that research project. But she also found David certainly didn’t have an appointment that day, so she thought he must be lost, especially since he really couldn’t converse at all.
- At that point, a second worker came into the office to start work and said
- “Oh. Hi, Dr. McGillivray. Nice to see you. What are you doing here?”
- Believe it or not, this person used to work with David at the Montreal Children’s Hospital! What a coincidence. So David’s identity was confirmed.
- They phoned the police who immediately made the connection to David’s Lost Person Report and phoned me around 8am to say he’d been found. I was so happy to get this news after a night of despair.
- They brought him home in a police car and he got out of the car and gave me a big smile, seemingly not at all the worse for wear. I wanted to know where and how he had spent the night but he had no recall and could tell me nothing. And I sensed he kind of thought “What are you on about?! What’s the problem?”
- A few days later, David and I visited the two wonderful staff members at the hospital who had helped us get David back to me and brought them flowers.
As it turned out, his Medic-Alert bracelet had not been viewed by anyone. Not a surprise, I guess. However, from that day on, I fitted David with one of those Air Tags and he wore it at all times around his neck. And I made sure the door was always locked and the key removed. I’m happy to say that David never wandered again.
Because of the anxiety episodes and the wandering, we were given access to a very helpful geriatric psychiatrist at the Clinique SCPD (symptômes comportementaux et psychologiques de la démence) who gave us advice on how to manage David’s changing behaviour and also new drugs to try. However, the meds could take months to kick in, we were told.
With Alzheimer’s, I had to keep reminding myself that, by this stage of the disease, David only lives in the moment. There is no past and no future. However, even though he can’t remember things from moment to moment, he still feels things just as much as he did in the past. Emotions and feelings are still there. However, they’re disconnected from memories.
In summary, as time went on, I was getting exhausted and frustrated with David needing, in effect, 24/7 care from me. I realized that, given these circumstances, I had a difficult decision to make – should I move David to a residence or not?
I was at a crossroads.
Seeking Advice and Making the Move
I had conversations about my options with my counsellor from the Alzheimer’s Society, David’s social worker and with David’s family and mine – as well as with our friends and my Support Group. They all left the decision about moving David to me but made it clear that they would endorse whatever decision I came to.
Feeling Guilty
Long story short, I decided that, given what David and I were going through, it was time to bite the bullet and move him to a residence. Did I feel guilty? You bet I did. But then I told myself there really wasn’t another option and it was better to move him when we could time it rather than it being an emergency move because of a fall or injury or some other incident.
I wanted to see what the residence options were. To my surprise, I learned that there were many organizations out there ready to help people like me make decisions and to help us find homes for loved ones. We don’t pay for the service – they get a “finders fee” if we choose one of the residences they suggest to us.
I randomly chose the organization Visavie. I looked over the agents who worked there and chose the one who looked gay – and he was!
Homophobia?
This wasn’t a flippant choice. There is worry amongst us elderly gays about whether we might face homophobia in seniors’ residences and Marc was very helpful in talking us through that. He said that organizations are working harder than they had in the past to make sure their homes are supportive of gender and sexual identities. However, he couldn’t guarantee it to be perfect nor could they always manage the attitudes of the other elderly residents. But any problem would be tackled – they claimed.
I eventually chose Résidence Selena, a new building located in the Atwater area of Montreal. The selling point for me was that it specialized in what they call “memory care”. As well, the staff was mostly bilingual which was important because, many years earlier in the disease, David had lost his almost perfect French.
Poignant?
Interestingly, David used to live in that area of town when I first met him. Why? Because his place of work – the Montreal Children’s Hospital – was nearby. A few years after David retired in 2011, that hospital moved to a new location. The old hospital was torn down and what, controversially, was built in its place? Five condo towers and Résidence Selena. So David is back living on the site where he worked for 20+ years. Is that ironic? sad? happy? bittersweet? poignant? You choose. Of course, that space is unrecognizable now but much of the neighbourhood remains the same.
Costs and Privilege
Let’s talk money. David’s social worker said that, given his dementia profile (10 on the Iso-SMAF scale of 1-14 if any of you know that system of profiling people with disabilities), David was eligible for a place in the public nursing home system in Quebec (we call them CHSLD’s). But there would likely be between a two and six month waiting list. The costs there are reasonable and certainly cheaper than the private option.
But I eventually did choose the private option and I recognize our privilege in being able to afford the quite a bit higher monthly costs. I want to say that I know that paying more doesn’t guarantee a better standard of care. There can be good and bad staff in both systems.. And I certainly have a high regard for the staff in CHSLD’s.
What we’re mainly paying extra for is perhaps more activities offered to David, somewhat better food and “classier” looking surroundings. I guess I could add that, by choosing the private option, we’re “freeing up” a bed in the public system that may be needed more by someone else.
The Move – November 5, 2024
David’s sister, Cathy, came into town to help with the move along with Jon, a friend of ours. With tears in my eyes, we all watched David climb slowly and awkwardly down the stairs at our home for the last time. That certainly helped me to confirm that this move was the right thing to do. I told him why we were moving him and he said ok but I’m not sure he even understood what I was saying. And, on top of that, he would have forgotten the conversation a few minutes later.
At Selena, David had a rocky start. His sad episodes continued and he was resisting some care. Despite this, the staff and other residents were very kind and patient and that helped greatly.
After about three weeks, the difficult periods had virtually stopped. Why? Nothing is certain but it’s probably through some combination of a safe and secure environment along with the meds finally kicking in. I was thrilled.
It may have also helped that the staff see the residents for who they are now, not who they were because, of course, they didn’t know David before he arrived there.
People ask me if David still knows me. I say it depends on what you mean by “know”. Knowing is a cognitive skill and he’s lost that. But his emotions are still all there and intact. Therefore, he can’t tell you my name or anything about me but, when I turn up to visit him, a big smile comes on his face and he gives me a big hug. He feels happy. So he “knows” me in that sense.
What is my new role?
Now that David has moved, my role in caring for him is different.
- At Selena, I need to spend time not only with David but I need to get to know the staff and learn from them how David is doing.
- As well, I want to get to know the other residents, some of whom I can still have somewhat regular conversations with – which I can’t do with David.
- Thirdly, I want to meet the other caregivers: the spouses and children of the residents. It’s like a new support group as we can share experiences about our loved ones as well as talk about the care they’re receiving at Selena.
I also had to get used to the idea that I wasn’t in 100% control of David anymore. The staff were taking over most of the care and I had to let go. For those of you who know me, you know that I’m not great at giving up control! But I’m slowly managing to do it!
Living Alone
Because of this move, my life has changed. I’m now living alone for the first time in 25 years. The first evening back home after David had moved, out of habit, I set the table for the two of us. I cried when I realized what I’d done.
My counsellor has told me that David and my destinies are not going in the same direction anymore – they’re “split”. David has a new destiny and I have permission to “let go” and to search for a new destiny for myself. That is VERY hard to get my head around but I’m working on it slowly.
I realized that this advice is probably similar to the advice that is given to those who have lost their spouses to death. Widows and widowers, along with grieving, have to eventually think about – when they’re ready – what their new destiny in life will be.
I know that my situation is not unique. Many of you have ended up living alone after losing a partner or friend or family member to death, disease or divorce, amongst other reasons.
Ambiguous Loss
Because my David is still alive, my grieving is somewhat different. The term for what I’m going through, I’ve learned, is “ambiguous loss”. David, as I knew him, is gone but he’s still there in body with his emotions, so my loss is not final – but it’s ambiguous. That helps me. And I certainly see elements of the “old” David still intact with his smile and gentle and agreeable nature.
Now I can spend time with David “hanging out” at the residence and the neighbourhood (no problem walking now!) rather than having to manage his care 24/7. Also, although he can hardly string a few words together, he can understand me if I use simple words and short sentences.
So I (and you!) have finally come to the end of this post – if you made it this far! It’s my longest ever post, written slowly over many months. My journey with David and his Alzheimer’s has been helped immensely by being able to share my story with others, like you in writing, and verbally, talking with friends and family. The knowledge that I’m not alone is immensely helpful.
So thank you for reading about our journey.
Also a big thank you to the following for reviewing drafts of this post and giving me very helpful suggestions: David Tacium, Larry Baer, Peter MacMillan and David’s sisters, Jane and Cathy.
