“Best job I have ever had.  I love it here.”  He is young, early 20s maybe, good looking and stylishly dressed.  He looks like a guy who might work in the music business or something.  “Really?” I said in complete disbelief “You love your job?”

I don’t know why I was so surprised; I had heard the same thing before from other staff.  I guess what was really surprising is that this job they all love so much is at a long-term-care home – a nursing home – you know – those nightmarish places where people are sent to die.

I first visited this nursing home a couple of nights before my mother was admitted. I thought I had arrived in hell.  The building was older than I had expected and the rooms were small.  My mother would have to share a room with one other person and the bathroom with 3 others.  But it was the residents who gave me pause – there seemed to be confused and distraught people everywhere.  Most were using wheelchairs or walkers, many looked asleep or lost in their own worlds, and a few seemed quite agitated. One woman was telling someone only she could see what she thought of them (let’s just say she didn’t like them), another asked me if I had seen her dog (I hadn’t), and one woman who appeared to be in her early 90s told me her parents were very worried about her brother, who was running with a bad crowd.

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Copyright © JD Cottier 2016

A word of advice – never visit a long-term care home for the first time at night, because some patients with dementia get more agitated after sundown.  They call it the sundown effect and it can be quite unsettling when you first see it.

I went home and had one of the worst nights of my life. How could I put anyone, let alone my own mother, in such a nightmarish corner of hell?

Yet I did just that, because I had no choice.

My mother had dementia.  Until then she was living in a modest, private “assisted living” retirement residence where her meals were prepared, her medications were administered by staff, and she had her own room with a private bathroom. The residence wasn’t locked and my mother could come and go as she pleased.  She loved going across the street and sitting in the park, and she loved going for her evening walk.In Starwood's Garden

Copyright © JD Cottier 2016

Over time her dementia got worse, which meant that when she went out for a walk she started forgetting how to get back.  Other residents would sometimes bring her back, or she would eventually find her own way, but the situation was getting dangerous.

One evening a passerby found her, very tired, confused, and completely lost, heading into the nearby woods.

She was considered an emergency placement, but finding a locked nursing home that was affordable and had room wasn’t easy, so she sat on the emergency list for a month waiting for something to become available.

Actually, there was one place that she probably could have moved to.  Months earlier my mom had a bad fall and as a result she had been sent to a rehab residence for a couple of months. It had secure units, lovely private rooms equipped with big screen TVs, and lots of comfy chairs. Even better, her admission there was all but assured. Lovely place, except that sometimes beauty really is skin deep. My mom was parked in front of the TV all day and the staff seemed disinterested at best and rude at worst.  Not one of them even hinted that they loved their job. No surprize then that my mom was upset the entire time she was there.  No – she was not going there.

So that place was off the list, but there were lots of others to chose from.  I picked out several facilities I thought would be suitable – all newer, close to my home, and offering private rooms. I applied to them all, and waited.

Waiting was hard. I lived in fear of a phone call telling me my mom was lost, or worse, because of her wandering. Yet, when a locked facility finally came up, I hesitated. The nursing home that was available, Extendicare Starwood, was not on my list; it was far from my home, older, and my mom would have to share a room.

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Copyright © JD Cottier 2016

I didn’t have much choice though, because I had to make a decision within an hour of the call or the spot would go to the next emergency placement on the list.  I took it sight unseen with the understanding that this was a temporary placement and I would move her when something more suitable came up.

That night I had my first visit and two days later she moved in.

The day of the move I spent several hours filling out paper work and talking with various staff members about her needs, preferences, and medical history, and whether they should resuscitate if she had a heart attack or stroke.  I thought I was prepared for that last question, but believe me, I wasn’t.

The place was a lot less chaotic in the light of day.  The staff went out of their way to make us comfortable and to ally some of my fears.  And, while the facility wasn’t new it was very clean and in good repair.  I was more relaxed when I left that I could have imagined, but I still expected a phone call telling me my mom was very upset, injured, or dead from the stress of the move.

My mom survived the night and greeted me the next day with a smile.  Whatever I was expecting, it wasn’t that.  We sat in the protected garden and she told me she liked it there, and while she might have been a bit hazy on where she was, the fact that she was happy was a huge relief.

 

Copyright © JD Cottier

Copyright © JD Cottier 2016

Over time I found out why she liked it there. She was rarely in her room, and while occasionally I would find her sitting watching a DVD or TV in a common room, she was just as likely to be in music therapy, at a concert, or enjoying some other activity.  Everyone knew her; I was surprised at the number of staff who smiled and greeted her by name when they saw her.

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Copyright © JD Cottier 2016

I made 2 promises to my mother when I walked her in to Starwood that first day. The first promise was that if ever she didn’t like it I would move her to a place she liked better. With that in mind I kept her on a waiting list for other homes for several weeks after she moved in  … just in case. Within a few weeks of her arrival I took her off the waiting lists; my mother was staying at Starwood. She liked it and she was happy, well cared for, and safe.

My second promise that first day was that I walked her in and I would walk her out when the time came.

My mother lived at Starwood for 4 years.  When it became clear she had very little time left Starwood summoned the family and we spent her last 2 days at her bedside.  All of her children were with her when she died.

After she died we waited in the room for the funeral home. Several staff  came and cried with us and many hugged us and wished us well. And then the funeral home arrived to get her body.  I hadn’t forgotten my promise and I waited for them to prepare her body so that I could walk with her when they wheeled her out the front door.

Over the intercom we heard an announcement “Code Angel”, which we assumed was advising staff that a resident had died and their body was leaving the building, which was partially true.

A staff member covered my mother’s body bag with a lovely blue blanket and the funeral home staff started wheeling her body through the halls for the last time.  Her three children walked beside her.  As we approached the hall leading to the front door we suddenly realized the whole reception area leading to the front door was lined with staff .  They had formed an honour guard to pay their last respects to our mother.

It is impossible to find the words for the feelings we all had in that moment.  I knew that walking my mother out of Starwood that last time would be difficult, but I had no idea that would also be one of the most profoundly moving experiences of my life.

Am I sorry my mom had to go into a long-term-care home?  Of course.  Now that she is gone do I have any regrets?

My mother lost a lot with her dementia, but her need for love, care, affection and attention never diminished one bit.  She received all of that and more in her final years.  No regrets!

 

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RIP Mom.

 Pauline Duquette

April 15, 1922 – May 1, 2016

Article and photos Copyright © JD Cottier  2016 All rights reserved.

 

13 Responses

  1. Annie Crisp

    The photo says it all. What a lovely smile.
    Thanks for writing about your experience. It makes it easier for the rest of us who have had to / or will have to, make the same decision for someone we love.

    Reply
  2. Colleen Glass

    I think I know how you feel; helping others find their way brings up a lot of emotions.

    Thank you for giving voice to your Mom and your journey while experiencing your Mom’s decline and move to Starwood.

    Jan’s Dad was at Starwood for several years, also with dementia, and I know the garden area is very accessible and shady.

    MC

    Reply
  3. Julia Keating-Brown

    I am so glad your Mom is doing good. What a great article!

    Reply
  4. Judy Palmer

    By coincidence I reheard a CBC program about the care of the elderly with dementia in Denmark after reading about your mother’s and your experience. It would appear that her new home has the respect and loving care that we all hope for our loved ones. Thanks for sharing your experience. Judy

    Reply
    • Enelra

      I helped move my mom from a one bedroom independent apartment in a residential care facility to a studio apartment. Mom is running out of money and so am I quickly. No one really anticipated this. The good news is that she has remained independent longer than we thought. (Mom has Parkinsons and a long term care policy that will kick in when she needs assisted living.) The bad news is that she will probably run out of money before she needs the care. I am exhausted and living in a fog. My sister is helping her unpack and settle in this weekend. I don’t think she will get everything done with mom because mom will have to get rid of at least 50% more stuff to really make the small space work. I dread dealing with the left overs when she leaves. Mom needs more and more help. I thought I was in the thick of things 8 years ago when she was diagnosed and she moved from her condo. Now I realize that it is really just beginning for me. The last years of a move, multiple falls, emergency room visits, managing multiple medications well that is seeming easy now. I am not looking forward to the next stage. I am not looking forward to aging myself.

      Reply
  5. Jill

    Such a terrific article and so full of informative information. I am so happy to hear that your Mom is settling so well in her new home. She is such a warm and kind person, who deserves nothing but the best. Congratulations to all the staff at Starwood for doing such a great job!

    Reply
    • JD Cottier

      Jill is one of the nurses who cared for my mom at her “assisted living” facility. My mom adored her, and for good reason – Jill always went that extra mile for the residents. Thank you Jill.

      Reply
  6. Frances Deverell

    I’m glad your mom has found a place where the staff like their jobs. Took me right back to putting my Mom in Central Park Lodge in Toronto. I had to decide whether to let her try to walk with a high risk of falling or move her to another facility that allowed restraints. My mom did not want to be restrained. So she had the odd fall. And the staff very wisely ended up putting her mattress on the floor.

    End of life is harder on the family, I think, than it is on the person going through it. My heart goes out to you.

    Reply
  7. Pearl

    interesting and moving article. I am so glad your mother is happy. I will have to make that decision for myself in the not too far future. Congrats on the web site.

    Reply
  8. Jennifer Palmer

    It’s true that when you see the inside of a long-term care facility that caters to people with dementia it’s scary and heartbreaking. I always thought it would be like a prison and I certainly would have never considered spending my final days in such a place if I had the choice. That was before. Having visited and experienced the reality was quite an eye-opener.
    The enclosed garden is a place of great comfort to both patients and their families. A little Eden where you can pretend, if only for a short while, that all is right in the world. There are many activities to keep them busy and occupied. I think the concerts are the favorite, as they all clap and several will tap their toes to the music.
    The staff are quite amazing. Not only do they know every patient’s name and have a ready smile for them, they are constantly touching them, giving a little pat on the shoulder or arm. It sounds simple but many elderly have no one to visit them and these little touches make their day. Of course nothing is perfect, but the good outweighs the bad by a long shot. I know that my mom feels secure and that’s what matters to the family the most. She’s amongst friends.

    Reply
  9. T Gama-Pinto

    No one wants to think about this. Not for their parents and not for themselves. It’s good that you have the courage to talk about this important subject.

    Reply
  10. Althea Taylor

    How very hard. Wonderful to still have a parent but so hard to see them so changed from the person who raised you. I think it is easy to forget, as the author says, that even though they have changed they still need love and attention and respect. Thanks!

    Reply
  11. F. Farmer

    I know exactly how you felt. I had to move my dad into a home and it was traumatic for both of us. Once you get used to it, it isn’t too bad, but my first impression was similar to what you experienced. My dad is gone now, but if I had to do it again I would. Thanks for sharing your story.

    Reply

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