Another post from my dear friend Deborah, as she offers us more of her heart wrenching account of her experiences as her husband’s caregiver. Get the tissues ready, her words make me appreciate Suzanna all the more.
(I’ll mention that if you’d like to communicate with Deborah privately, please email me at sessa1@live.ca and I’ll make the introductions off line).
I tend to get a bit anxious when packing for a business trip - I usually forget something, like dental floss or my hairbrush, or worst case scenario, my hair straightener. On my ride to the airport, I’m mentally unpacking my suitcase to see what I forgot and will need to buy when I get there.
This time was different. I knew if I forgot anything it was a ten minute drive home. I didn't want to be too organized and have everything packed on this first trip as it was already emotional enough.
Of course he didn't want to go, and it was obviously a difficult day for the kids so I was thankful they were at school and didn't have to go through the heartache and awkwardness this next step was bringing. He would be 4.6 kilometres away and coming home on weekends. This was all for the best under the circumstances and as my mom would say (quoting the motivational poster in our mudroom of a disturbing looking face made out of lemons, and a faucet for a nose with lemonade pouring out of it) “When life gives you lemons, make lemonade.” We were stuck drinking the lemonade, hating every mouthful.
It's not a typical reason to request a day off work, to pack up your husband's belongings, put him in the car, his walker, wheelchair and suitcase in the trunk and drive him to a Nursing Home, where he will live out the rest of his life while his body and mind slowly betray him, until he dies.
The drive was quiet, except for his insistence he was going to get better and come home. Over the preceding few months while we dealt with the steady decline in his health, the ongoing management of his health care needs, and the awareness that our family was suffering from the grind of trying to integrate a hopeless situation into normal suburban family experience, we did the respite thing. Some nursing homes have respite beds - beds designated for people who are living at home with an illness that requires a lot of support, and the wear and tear of the care being provided calls for respite for the caregiver. Definitions of respite include "an interval of relief" and "a delay or cessation of a time, especially of anything distressing or trying" So basically I could 'send him away' to be cared for in a nursing home while I took a break from the daily insanity loop of caregiving, which I turned into focusing on caring for my kids and job. With all of the medical appointments and increasing care needs, I felt like my kids were falling into the category of 'being raised by wolves'. I was physically and emotionally absent and exhausted. The guilt I felt over the need to take care of myself over my husband was overwhelming. That became my state of being, and major life decisions were being directed by emotionally unattached health care professionals, who assured me through their experience of seeing this cycle a thousand times, that this was a necessary step.
I can still vividly recall the first respite experience, and the mixture of feelings... emptiness, betrayal, resignation and self preservation as I drove out of the parking lot that day, unable to stop crying as I was leaving him for a two week stay at a nursing home, in a ward room with three other room mates, all of whom were at least 20 years older than him. How does anyone even get to the place where this is even necessary?
As we pulled up to the home where he would be living out the rest of his days, I expected Nurse Ratched from "One Flew over the Cuckoo's nest" to be waiting for us, in a stoic stance, her nurse’s cap firmly pinned to her head, arms crossed, tapping her foot impatiently as she had many more pressing things to do. No one was waiting - it was just another day at a nursing home.
The discomfort that comes with uncertainty enveloped me - I thought "just keep moving like you know what you're doing. It will all be ok”. But this wasn’t a nursing home visit I was conducting as part of my job. This was personal. I wondered how he felt in this life changing moment. Did he feel like a kid being dropped off at an orphanage? Or being thrown to the curb? Or thinking about the significance of what was happening - being admitted to an institution where he would be living with people he didn't even know, many much older and frailer than he. Did he understand that people he would meet, eat meals, play bingo with, enjoy pub night with, have music therapy with, and consider friends, would die. This wasn't a hospital stay where he would receive treatment, be discharged and return home. This was his new home, without the excitement and pride of home ownership.
My husband could still walk short distances using his walker, and that's how he made his entrance to his new living space. I left everything else in the car. We would walk in without all of his belongings, as if trying to be nonchalant would make it less surreal.
We needed to go through the 'admission process'...something that's done many times every month in hundreds of nursing homes across the country. The average "turnover" rate is 50% - imagine - a business where half of your clients die every year. Better than the funeral home business I suppose. Here I was working for one of the largest nursing home chains in Canada and my identity was shifting from someone who visited Nursing Homes from Corporate office, name-badge securely magnetized to my jacket, to suddenly becoming one of the members of this home’s community. I am now a Nursing Home resident's wife.
We took the elevator to the second floor, to the wing that would be his new 'neighborhood'. That's what they call them. I was acutely aware of the institutional feel...the bright lighting, the shiny floors, the noise of call bells ringing and the sanitized smell of being in a Long Term Care Facility. I had this whole self-critical conversation in my head for not having visited before and being more familiar with his new home. Perhaps then I wouldn't have felt so out of control. Control was a state I was desperately trying to create for myself.
I had just received the phone call a few days before. For a month while he was on the crisis list for placement I knew my phone could ring at any time and a voice at the other end of the phone would tell me in a detached and procedural way that a bed in one of the 7 homes we selected on the list had become available. I wouldn't know which home was going to select him or when. I had this love/hate relationship with my phone. I knew I could no longer take care of him at home, yet I was dreading the responsibility of pulling the trigger of acceptance. Once I got the call, I would be required to make a decision within 24 hours, and then the move in date would be determined.
Nursing Homes need to turn the beds over quickly - usually within 72 hours. It was headspinning how fast we went from barely coping at home to this life altering change.
Our admission appointment was scheduled for 11:00. As I learned, appointments typically run late as they deal with the busyness and unpredictability of the day dealing with their elderly, frail client base. On any given day in a nursing home, situations that require immediate attention are happening. A resident has fallen, a responsive behaviour is occurring that requires intervention, a family member is complaining, or someone just needs eye contact, a warm smile or a hug.
We were invited to wait in the sitting room, and the intake team would be with us shortly. It was a welcoming room, with a piano that to this day I've never heard anyone play. As I sat on the firm, spill proof treated love seat, I watched staff and residents walk and wheel by, going about their day, and I felt annoyed that no one acknowledged how significant this was for us. What I was feeling inside started to leak out through the tears I was fighting to keep from glossing up my eyes. How did it come to this? The inability to process this moment was reflected as a forced polite game face smile on my apprehensive looking face while I sat with my hands neatly folded on my lap. In that moment he became "that man who is way too young to be in a nursing home", and I became 'that poor woman whose husband was dying in a nursing home".
The Director of Care, Attending Physician and Neighborhood RN filed into the room, introduced themselves and welcomed us to their community. There are two institutions people don’t want to go to – jails and nursing homes. I had to bite back the anger I felt, knowing it was misdirected, and understanding they are doing their best to help us ‘make lemonade’. The Doctor had a big binder in his hands, which held my husband's admission papers and questionnaires that needed to be completed. In the last two and a half years, we had appointments with twenty seven specialists in seven hospitals in three cities - I could answer any question as it related to his medical history. I had even created a timeline chart of all his appointments with an Excel spreadsheet breakdown by specialty. What I didn't expect so soon in this process was the advanced medical directive question. I felt like I was being pitched by a salesman going for the close without explanation of the features/benefits of the product. If my husband were to have a significant event (stroke, heart attack), did we want them to intervene to save his life, or...no heroics. Sure, he had an incurable degenerative disease, but I thought, “Really? You need to know this now”? It is part of the Long Term Care process and it’s a Ministry of Health requirement so yes, they needed to tick off one of the boxes on the form.
So which one was it? We were told it could be changed as his health changed (aka declined) so we went with 'heroics, please".
I've never focused so hard on holding back the urge to sob uncontrollably - I couldn't comprehend how quickly we got to the bottom line of things. Not that people who admit a family member into a Nursing Home ever expect their family member will walk out those front doors clicking their heels and heading home for the twilight years..I just thought - can we ease into this a little more slowly and respectfully, allowing the brevity of the situation to sink in - versus getting all the checkmarks on the to do list done?
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