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Saturday, July 25, 2015

Room 101

This was dad's last breakfast at home before we took him to the hospital and never moved him home again. We poured our milk from the rose pitcher that I remember since forever and ever growing up on the farm. Our milk came home in ice cream pails from dad's cousin's dairy across the road. I knew my way around the milk room, and would release the lever on the big stainless steel reservoir and watch the rich white milk fill the pails, then carefully carry them home. Ice cream pails then were made of heavy plastic that lasted for many years, and the metal handles weren't at risk of breaking.

That rose patterned milk jug says something to me about endurance. About a time before the throwaway culture. About milk that comes from actual cows, about neighbours who never move, about the security and safety of my childhood.

My dad was a respected man in our farming community, and in surrounding areas. He was a smart, fair, kind, hardworking man. Our family life wasn't perfect, and there won't be an upcoming book entitled: "Bliss in Blumengard", but looking back, I'm astounded by how safe my childhood was. No worry for food, shelter, company. Always safe. So safe in fact, that we would be shocked in years to come to learn of incest and abuse in the very circle we called our own. My mother hadn't even known that those things were a possibility, that's how safe we were.

We were taught to treat people with respect, especially our elders. We never addressed our seniors by their first names, and we were expected not to behave in casual, familiar ways, not to ask for things that weren't offered, and always to seek to be helpful.

As dad aged, he held fiercely to his independence. Mom and dad stayed in their home, cut their own grass, worked their own garden, did their own housework, and went for daily walks. They remained true to their convictions of contributing to the community by dedicating twenty + years to volunteerism.

But life has its inevitable stages, and after dad's stroke in 2006, his memory slowly but surely continued to erode, even as he and mom continued to enjoy their independence. We kids offered more time and support, marvelling all the way at their resilience, positive attitude, and appreciation of our love for them. But eventually, dad's constant bladder infections, abdominal pain, and confusion led us to the hospital in January 2015 where he has resided ever since.

Long term care homes in our area are backed up one, to one and a half years and often times, people like my dad land up in hospital awaiting placement. It's not ideal, but its pretty okay-ish. The staff at Bethesda are awesome. Mom lives four blocks away and still drives at eight-nine. We kids quickly established a visiting schedule, and dad never spent a day without family by his side, helping him work out his confused thoughts, reassuring him, helping him to the washroom, shaving his face.

But we had been warned. Although they would not send dad home, they simply could not guarantee that he wouldn't be moved. And he did. Initially he had a lovely spot in front of a large window, with room for two or more of us to visit. Then he got moved to Room 101, cramped into what felt like a corner, with two other roommates. We were sad! We liked Room 110 for dad, with its window and its relative space, and its one roommate. But! we said- it's not Morris. It's not Vita. It's still four blocks from mom, and he is still safe, and we can still dedicate ourselves to him.

Room 101 became a gift to us. Cramped in with little privacy, we soon came to know dad's roomies. Big Guy to the west liked cheezies, and his gown was sometimes vaguely orange. His wife was devoted and spent every day with him. We fell in love with her as well. When the days came that his breathing shallowed and slowed, we felt his wife's loss keenly. At the funeral it was sweet to "see" him in his younger years, full of fun and energy for his grandchildren.

Even Bigger Guy to the south was initially kind of intimidating. His loss of space was more profound- having moved from a large private room into these relatively cramped quarters with two old men and their families he looked and sounded less than impressed. But "Tiny" as we came to know him, became so precious to us all. Tiny moved to the beat of his own drum, and as he like to say- he liked anything that was bad for him. So as we loved him more and more, we began to bring him gifts of Pepsi (his favourite- he scorned water), baking, and soup (another favourite).

Tiny told us stories of growing up in residential school. He told us he wished he had a mom and dad who loved him. Tiny began to call our mom "Mudder", and she willingly adopted him, holding out a basin when he needed to vomit, bringing him homemade buns, and reading him "The Daily Bread". My teeny tiny little birdie of a mother, and this enormous man. Their relationship crossed so many of my mother's previously held boundaries and prejudices.

Tiny looked after my dad. When dad awoke in the night afraid and confused, Tiny would remind him of his family who loved him. Tiny would remind dad of his years of farming, and it settled dad to be drawn to something familiar and grounding. When dad would be convinced of his mobility when he had none, Tiny would ring for the nurse, as dad couldn't remember how to pull his own help cord. Sometimes it would be too late, and dad would be lying on the floor, having taken flight from his bed, forgetting that his legs were weak. Tiny would call out in the night until the staff would come. Tiny became our ambassador, always reporting dad's status when we came to sit with him. Tiny reported the quality of dad's night, the state of his confusion, and any perceived injustices that had occured in our absence.

And we cared for Tiny. He was so easy to love.

Then one day I got a text from Kathy: "Tiny has died." Growing increasingly sicker and short of breath, with no hope of ever going home, Tiny removed his oxygen mask and ceased to exist.

My brother and I drove straightaway to the hospital- Tiny was also ours. I couldn't bear to go the next day and see his empty space without at least showing up. Dad sensed the heaviness in room 101 and asked- "How do you expect me to sleep in a morgue?", so we wheeled dad to another room and tried to speak of more restful things, even as we imagined room 101 without Tiny in it.

I admit to resenting the patient who took up Tiny's bed, and I guarded myself against falling in love again. Tiny's presence and absence hung heavy in the room. I was happy for him to have gone in peace, but I felt sad for him and us as well. After Tiny's replacement was released, we asked if dad could move to that corner of the room.

Soon enough with dad in TIny's spot, dad's prior spot became Mr F's new home. His daughter was devoted and soon we were exchanging greetings and discussing books. I learned to worry about her, as she didn't have the five siblings that I do to help fill in the gaps. She learned to worry that her dad's hallucinations might be offensive to us, but we quickly reassured her that perceptions of mom and dad smoking cigars behind dad's curtain partition would help us pass the time!

Then another text from Kathy: "Dad is being moved to Vita. Today."

But Room 101! And Mr F! All the staff who have become familiar to dad!

We had been warned, that part is true. But after six months, we had been lulled into believing it couldn't happen to us.

When you are an elder in our culture, you have lost your place of significance in this world. We carry on stupidly glorifying youth, and shoving our ancestors wherever there's a tiny space.

My siblings went immediately into high gear, exploring options. Looking for ways to take dad home instead of moving him 35 minutes south, nearly at the US border.

Kathy and I headed over to our mom's house and suggested she sit down. Dad is fine, I insisted.

"He's going to Vita?" mom asked, joking, then the colour draining from her face as we confirmed.

When we suggested the alternative of moving dad home with lots of supports, our dear sweet brave mother wept. And wept.

So we packed up room 101. Took all the photos off the wall, folded up the calendar, and waited for the paramedics. When they arrived to transfer dad to the stretcher, I was already sad and mad at everyone so I made a fuss about the stretcher. Insisted she use the brakes when she wanted to simply brace it with her body. Not for my dad. Not today. Brakes.

"But that's not how we do it".


It was a tiny thing, but there was nothing I could do about Vita. I could at the very least insist that the stretcher's brakes be engaged before the transfer.

Bed 3 in Room 101 is likely refilled by now. It's not Tiny, and its not dad.

Dear old dad lives in Vita now, and my mom won't visit every day.

His room is large and there are no roommates. He is an hour away for me. An hour and a half for my brother and sister. And more than three hours for my other sister.

My mama in her brave resilient way insists that dad will be fine here. That he will be lovingly cared for. That we cannot maintain our schedule of daily visits with these distances.

And we will all learn to love Room 5. We will.



Judy said...

My heart is breaking for you Joyce.
Many many prayers for your kind family.

brenda said...

It's still hard to believe that in the 21st century this is the best we can do for our seniors. The scariest part is that, with the balance of the boomers still awaiting this stage of life, things won't get better soon. More likely worse. And I dont hear our politicians addressing this issue. You're right, our elderly get lost in a world made for youth.

Much as I miss my dear old Dad, I'm ever grateful he was spared this part of aging. I think he left this world by choice.

joyce said...

It could be so much worse. I am deeply grateful for my family. We don't argue or fight, we are all equal in terms of opinions about what's best for dad and mom. We have each others back. I remember reading all your stories about your mom and dad, Judy. I bet you miss them, even though it was hard and impossible.

Brenda- dad would like to die. But then he forgets.....
I am grateful there are good and kind people like you who love our elderly. I only wish there were more.

Karla said...

These are very hard words to read, and I know they were even harder to write. Dear old Dad doesn't deserve this. Your devoted and hard-working and hard-loving mom doesn't deserve it either. So much loss.

It is true - our seniors are so often without any power or any voice when it comes to the things that affect them most. They spend their lives pouring into their communities, and then when they need a quiet room in that same community to go through their last chapter of growing old, they are told there isn't any room for them. The injustice of this is so hard to swallow. It seems it's the same in every rural community in Manitoba. Why have we allowed this to happen? Until it comes to our doorstep, it's so easy to pretend it isn't happening.

Your family is cut from enduring and rugged cloth. I know you will survive this. But I wish so desperately that none of you had to. I have a broken heart for you all today. Love you Joyce.

Anonymous said...

I am so sorry to hear another senior is being moved from his community to a care home far from home and family.

Anonymous said...

I weep for you, your family, and for others that this happens to. You've shared well and accurately of the disbelief and frustration. I've been in that work position of telling families that their loved one will be moved to a location inconveniently far away. It's a difficult thing. And it isn't going to change anytime soon, sadly.
I am so proud of your tenacity with insisting on brakes. So proud. When there are seemingly next to no choices, you go girl and find some.
Thoughts with you all as you transition through this change.

Anonymous said...

This just breaks my heart. We were fortunate that Dad only had a 6 month stay in hospital, close to home, before being transferred to the care home, again close to home. This just shows all that is wrong with our health care system for seniors. My heart is breaking for you, your wonderful siblings and your parents. It's wonderful to hear that you all are on the same page and supporting your parents to the best of your capabilities. Families that can't get it together drive me nuts... I do know that Vita is a great hospital and your dad will be well taken care of, it's just so far away... My prayers are with you and yours.

A former bag buyer...

joyce said...

Since dad left room 101, both of those roommates have also passed away.
So many departures, so many tributes.
Dad has been moved to room one, right across from the nurses station.
The staff is very kind.
Dad is getting thinner and more confused.

Susan Humeston said...

I so ache for you. I went through this with my dad. The dementia, the falls because he would forget he couldn't walk, the confusion. He asked my mom once where his mother was. He told her once in a more lucid moment, "I've gone so deep inside myself I can't find my way out anymore." He progressively failed just like your father, first at home with my mother valiantly caring for him until he could no longer even shuffle with a walker across the floor ever so slowly. When she could not lift him, he had to go into an old age home/hospital. Luckily it was in a small town in Central Florida and it wasn't far for my mom to visit each day. For me, though, it was always more than a 2 hour drive each way, so I didn't visit as much as I wish I could have. It was a relief when he passed, and I love it that his last meal on the night before he died was his favorite food in the world - ice cream. I didn't get as involved as my mother did with roommates and others who lived there, but it always depressed me to hear my father surrounded by people randomly yelling out, "help me" or some other such thing. I know when the day came for him to go permanently to the home he was devastated and my mother felt horrible. There is no support for people who have worked hard all their lives and just aren't rich enough to afford around the clock care for a loved one that enables them to stay in their familiar surroundings. I hate that. My prayers are for you and the rest of your family as you negotiate these days.

Anonymous said...

How often does your mother get to see your dad now?

janice said...

Wow, so eloquent. We also have been through this, twice, and we also did not fight or argue, and just offered support among the siblings. Dad and mom each got moved to a care center in Calgary, not too far away. The were separated ultimately, but did not like each other much anyway. Your parents feel the loss more.

We were so grateful that we did not have to care for them in anybody's home - there are some countries where they have no choice, and even in the USA, my sister works in elder care, and subsidized seniors have to die within a year of nursing care, or they run out of funds, and the family has to take them home. Mom would have been OK, but dad lasted 2.5 years in his wheel chair.

Dad was happiest the last 2 years, because he forgot mom died, as he lost his mind. He told amazing stories, some we had not heard before, but they got a bit old, quickly, repeated every 5 minutes, then every 4 minutes, 2 minutes . . . as he got more loopy and the loops got shorter.

You have written a poignant tribute to your dad. It is so hard to watch. Hugs and love from someone who has been through it.