How do you miss someone who is still here?
The answer to that question is Dementia. It is what makes me miss my mom even though I sat with her this very afternoon. Even though we smiled and joked. Even though just today we held hands, hugged and looked at family pictures while snuggling on her love-seat - even still I miss her.
Recently, on my Facebook page, I shared a scenario you might be familiar with. You may have come across the questionnaire that asks: "If you could choose to spend an hour with any person, living or dead, who would that person be?" I used to imagine the historic figures, famous authors or celebrities I would love to share that time with. But not any more. Now, I always wish that imaginary hour or afternoon could be spend with "pre-dementia" Mom! Here's why I would love it:
1. I would love to hear her speak in complete sentences. Mom was such a gifted speaker, communicator and story teller. Whether it was children or adults, she had a way of communicating a message. To lose your very ability to communicate your feelings and observations - that's just crappy!
2. I would love to see her eyes sparkle - I mean REALLY sparkle with recognition when she sees me and my family members. On good days I see it a bit, but as the disease progresses I have to really dig for it. Today she didn't seem to know who I was at first.
3. I would love to be the daughter. It took several years of Mom being sick for me to stop reaching for the phone when I wanted my MOM. Still many times I wish I had her to bounce an idea off of, share a memory, say a prayer with, ask her advise or just make me feel little again. I miss that. :)
4. I would love to play a game of rummy with her.
5. I would love to hear her laugh - REALLY laugh.
6. I would love to hear her sing. Not that she was a fantastic singer - in fact she wasn't really - but still she sang: old hymns of the faith, gospel choruses, children's songs and Bible school tunes. I am forgetting them as I have no one to share them with. Singing now is one way we can connect, but the link is weak. I'd love to hear her sing to me again.
7. I would love to SEE her again - not the Mom who can't remember, the mom who won't let me wipe the pudding stains of her face, the Mom who is thick with medications or the Mom who sometimes hits people and can be unpredictable. I mean the funny, sensitive, discerning, spiritual and loving widow, mother, teacher and friend.
There is some solace I guess in knowing I am blessed to have had a mother who was all these things. I am even blessed to have a mother who still holds my hand and smiles at my stories. For this I am grateful. However, I miss my mom...
Even though she is here.
You wouldn’t know from my silence that for the entire year
of 2015, Dementia and Alzheimer’s has dominated my thoughts. I haven’t
forgotten or grown tired of the topic – No, it is what I have talked about,
read about, advocated for and thought about as I tried to fall asleep.
For over two years, I have had the privilege of taking part
in a project that allowed me to meet hundreds of people across South Eastern Ontario
and hear their "lived experiences” as they lived with or supported someone
living with dementia or similar diagnoses.
Oddly enough, the energy, passion and purpose that went into
this venture – seems to have left me speechless when it comes to writing about
my own mother’s dementia story. Instead it is as if all the experiences have rolled
up into one large story that cannot be separated. Even now as I write, I am not
sure where things begin and where they end.
Like all difficulties we are forced to face in life, trials are great teachers and Dementia has taught me several lessons – Lessons from Losses and Lessons of Hope.
Lessons from the Losses:
No one could have
prepared me for the sadness, the repetitive losses and the heart break that
comes with this disease. This is not the "senility” we joked unknowingly about
as children. This is not something "cute” that old people go through.
No one could have prepared me for the
stories of spouses who woke in the night, filled with terror, finding their
loved one gone from their homes on a blustering January night -only to be found
wandering down the middle of a highway lost and disoriented.
No one could have
prepared me for how difficult and chaotic it is for older adults to find
help, services and advice as the people they love begin to fall apart under the
weight of memory loss and confusion. I knew from our own story that we felt
frightened, in need of help and confused about how to find it – but I could not
have even fathomed the amount of people that begin and end their days asking
themselves, "What Are We Going to Do?”
No one could have
prepared me for the gentleman who wished the love of his entire life a "Happy
60th Anniversary” only to be met with the crushing reply: "Are we married?”
No one could have
prepared me for the stories of responsive behaviours that lead to violence,
threats and accusations as some of the gentlest souls are now over taken by
aggression or locked up in anxious and fearful thoughts. No one could have told me what it would feel like to receive a phone
call that my mother has hit someone.
No one could have
prepared me to watch my mother lose more and more little pieces of her true
self, her ability to communicate, write her name, read a book, recognize her
grandchildren or even remember my name.
And yet…in all this sadness, tragedy and loss – there have
been lessons of hope and beauty.
Lessons of Hope
It turns out the
beauty is in the people.
I have witnessed husbands, wives, friends and adult children
who have endured more chaos, pain and loss than I could even imagine, and yet
each day they rise, they love, serving as caregivers and advocates - and still
find time to reach out to others who are hurting.
Despite the gaps, the organizational issues and the shortage
of funds, I have seen wonderful, amazing paid and volunteer staff serve with
excellence and compassion in long term care homes, adult day programs,
hospitals and doctor’s offices. More than once in this journey, I have wept in
the arms of someone who was being paid to care for my mother – and felt real
empathy and concern.
I have watched men and women rally together in support
groups, church groups or neighbourhoods lifting each other’s burdens, sharing
tips and resources. I have been reminded that people are good, that most people
(not just some people) DO care! I too have experienced community from people
who started out as strangers – but through the sharing of our lived experiences
have found peace of mind and friendship.
But, most of all, I have seen acts of selflessness,
faithfulness and loyalty from people that
made me want to be a better person.
|Mom's Good Day
It's hard to believe that over five years have passed since my mom last sat with her legs dangling in our pool, laughing and visiting with our family - enjoying the barbecue, the warm summer weather and the drives to the lake.
In some ways it just seems like yesterday that she stayed with us that August visit and in other ways it feels like an eternity ago. I guess I hold onto that memory since it was the last time I recall spending time with mom before she began to shed layer upon layer of her true self.
I apologize for neglecting this poor blog lately, but unlike the early days of her dementia, there really isn't much to say. Our relationship has settled down to Mom slowly fading away and me looking for opportunities to connect - to share our love for one another, provide her with some comfort and see her smile.
The last few months those connections have not been so good. There were a few falls that she just didn't bounce back from, a stomach flu and an infection that took that punch out of her. Most of our visits (which I confess have been less frequent than I would like) have been either me watching Mom sleep or with her being very distracted and distant. Let's be honest, don't these kind of visits take the punch out of us too?
This Saturday it took a whole lot of self talk and pushing myself to go and see her. But to my surprise, I caught her on a good day; a "smiley- alert -remembering and speaking more clearly than normal - saying my name- saying I love you"- kind of day. And you know what? It almost felt like a little miracle.
I embrace these days because I don't know when another one will come by. I cherish them because I know they will be few and I feel blessed and grateful because I got to "see" a little bit of the Mom that still remains. That's all that I can do. :)
|A Reluctant Visitor
It is one of those days- we all have them. Today I am going to visit Mom.
I was going to go this morning, right around 10am when she'd be finished her breakfast so it wouldn't interfere with the exercise class she attends on her better days. But 10 o'clock came and went and now it is after 12 noon and I still haven't put my coat on.
A sense of sadness is hanging over me today. The last few weeks our visits haven't been good. There haven't been those little jewels of connection, those moments where I still can see the twinkle in her eye and know that she is still in there. Instead she has either been frantic and paranoid or distant and mumbling. I find myself throwing in that extra load of laundry, checking my email one last time, wrestling with the dread that has settled in my bones.
"Today I don't want to visit my mom."
What a horrible thing to say, to think, to write -but it is true. I swallow a little guilt. It doesn't mean I don't love my mom. It doesn't even mean I wont go - I will. But some days it is difficult to muster up the smile when all we see is sorrow.
We all have days like this and that is ok
On days like these I remember with clarity my mother's words a few years back as we stood in an antique shop down the street from her home. It was during one of those "If something ever happens to Dad" talks. We were chatting about the idea of Mom coming to live with us. "We all get along, you could help us and we could help you - it just makes sense." I said. With that prophetic-mother look in her eyes she said calmly, "You don't know what you are saying. As people get older they get less fun. I may not be the person I am today."
Those words are ringing inside me today. She knew. She had lived long enough, watched her parents and others long enough to know what I know today. Life is fragile. She also knew that every day was a sacred. She knew that there were no guarantees and that was ok with her. That day year's back, she wanted to enjoy my company, to window shop and laugh - not plan for future days that may never come.
So after I post this I will finish my lunch, get on my coat and share this sacred day with mom. Maybe, just maybe, I'll see the twinkle.
|Better than Neighbourly
This morning I got a phone call from an old friend of mine and my mothers - a lovely blast from the past. It is funny how talking to people who know "the old Phyllis" makes me both happy and sad. It leaves me feeling sad, of course, because it reminds me of how much of Mom we've lost. But, mostly they make me happy because they allow me the pleasure of remembering.
I totally love the town we moved to over ten years ago, but when you move away from where your family and childhood friends live, you never feel fully "known". You lose the enjoyment of shared stories, the jogging of long forgotten memories or better yet - people telling you things about yourself that you didn't know.
Well, today I discovered something I am surprised took me so long to hear about. Two years ago, my mother's neighbour, Austin passed away. He was only 65 years old. I am still a little shocked it took so long for this news to get to me and am embarrassed I never got to pass on my condolences. But mostly, I'm sad that I never got to tell him how thankful I am for everything he did for my mom.
Austin, wasn't just a "next door neighbour" in the sense that many of us (in our transient lives) think of neighbours. I am not sure when Austin and his family moved next door but (just like my parents) it was long before I was born and another twenty years after I left home. I can't remember a time he wasn't puttering out in his garage or offering a wave from his back deck.
After my father passed away, Austin and his wife are the reason my mom was able to stay in her home as long as she did. During the winter months, he'd often pick up a few groceries for her, pop by to chat, became the lawn mower, snow remover and handy man. One night, mom wasn't feeling well and had been up a few times in the night. The next morning Austin was over - he'd seen the light on and wanted to know if she was ok. In her final difficult days living at home - when the dementia and delirium had made her come unglued - he shared our heart ache and was sad to see her go.
So, today I want to give tribute to this kind and helpful man. Sadly, my mom will not remember him, nor does she remember the home my father built or the town she once loved so very much. Her memories have become unraveled like a ball of yarn with only the oldest ones holding on for dear life. Instead of a picture of our family home, above her bed is the black and white photograph of her childhood home and the long ago memories of her parents and siblings. But, I remember Austin. With the aging population, the increase in dementia and the focus on keeping people in their homes longer, our world is going to need more people like him.
I am reminded that I too need to be bold enough to knock on the door of someone next door sometimes and say, "Hey, I saw your light on - are you ok?"
It’s been a long time since I’ve been really mothered.
If only I could go back in time to my fifteen year-old self
and let her know how much I was going to miss it. Hmm…what would I have
done differently? That’s the thing about dementia and diagnoses like it, at a
certain point adult children and even spouses switch hats and move from "the
cared for” to "the carer”.
I was thinking about
this on Valentine’s Day of this year. My husband and I were babysitting our
granddaughter and brought her in for a visit with my mom. Watching my mom and
baby Grace connect through smiles and cooing and physical touch was such a
beautiful thing to see. There was no need for language or short term memory –
it was just a great grandmother and her great granddaughter sharing a few
moments. So precious! Watching mom in this "mothering” mode, reminded me of how
long it has been since I have felt like the daughter instead of the mother.
Looking back, I
remember the first moment I felt our roles begin to shift. Years ago, before my
father passed away, Dad had suffered a heart attack. We all rushed to the hospital
to visit. After a brief visit with Dad, we were led to a waiting area for some
information from the doctor. I was feeling small and frightened. Mom was
sitting on the arm of the couch. Needing to be comforted, I slid onto the sofa
beside her attempting to find her arm around my shoulder, but before I knew it,
Mom slid down onto the couch into my embrace. It hit me our roles were
changing. I was moving from comforted to comforter – from daughter to mother.
Sometimes I would love
to be the daughter again.
Even now after five years, it still crosses my mind to pick
up the phone to share good news with Mom when it happens. I still pause and
remember – "Oh ya, that can’t happen anymore.” When I am worried, when I need
some perspective or when I am just feeling small and vulnerable, how great it
would be to hear her say, "You’re doing great! It’s going to be ok. Everything
will work out. I’m praying for you. I am proud of you….and ….I love you.” I
miss that! I think for me that is the biggest loss I experience because of this
Yet, even still, it is an honour to be a comforter. It is a
role I willingly accept and would do again if needed. Fortunately, many substitute mothers have
found their way into my lives. I am blessed to have some very special women who
encourage, embrace and mother me a little! I doubt they even know how much they
mean to me.
At the end of our last visit, as I rose to leave mom, I
leaned over and kissed her on the cheek and said, "I love you Mom!” "I know you
do,” she said with a big grin. "I know you do!”
I had to smile as I walked away
thinking: "I know you do too Mom!”
|A Visitor's Guide
Whether it is a parent, and old friend or a spouse, visiting someone you love with dementia can be difficult. People don't know what to say or do. They feel uncertain and embarrassed. Some people just disappear all together. The following tips for making visits easier comes from Ryleysforum. I'm sure you'll find her advice helpful. Enjoy!
Anyone who has visited someone in
hospital or in a long term care setting can relate to the initial stress of
visiting! I feel like somewhat of an expert when it comes to visiting!
(Considering on my first visit the words that were exchanged were: "You
can just turn around and walk right back out!"
Even now after I have visited all day I often return
home to phone calls saying "Where are you? You said you were coming here
today!" Needless to say memorable or not, we soon both couldn't get enough
of each other.
Visiting can be very traditional. You visit, you bring
gifts! Gifts ARE lovely. Here are some suggestions:
- a treat, (usually just enough to eat during the
visit) you don't want to invite a tummy ache, unwanted illness or creatures.
- a short story, Readers Digest, The Sears Catalogue,
- a calendar with great photos
- Flowers or a plant
- a journal and pen
- a puzzle
You could be somewhat unconventional and start a real
conversation by bringing:
- a photograph or two ( ideally from the past)
- a newspaper clipping (controversial, or interesting)
- fun and pretty stick and peel wall decals
- some recipe cards (make it your goal to ask for
- hand lotion (Try it right then and there)
- Large type words to favourite songs or poems
- a memory box of relevant items from the past, to
initiate conversation (something job or hobby related like a small tool,
screws, etc. or baking tools, baseball glove and ball, gardening tools.)
- Magnifying glass and small box of items to observe
- a tea set (to enjoy a proper tea time together)
- a Guest book, for visitors to sign, or use as a
- a large print list of well known jingles or proverbs.
(The rain in Spain...)
- variety of cards with self addressed stamped
envelopes. You could file them by the month that the event happens in.
- nail polish, manicure set or temporary hair
color Hi lites (enjoy your own private spa day)
- a pet ( most LTC centres have easily met regulations
regarding bringing your own dog)
- a gift of scents. (Did you know smell has the
strongest and most direct connection to memory.) Some scents that evoke
memories are: Microwave popcorn, cinnamon bun, clean pillowcase, Old Spice
aftershave, perfumed sachets, candied fruit, fresh baked ginger cookies,
sawdust! Maybe build or paint a birdhouse together.
- If you come empty handed do not worry. The gift shop on
the premises offers snacks, drinks and note paper, even ice cream!
If all else fails, chances are you will find your first
conversation starter right at the door to the room! Some Long term care homes have a glass showcase just outside the resident's room that will give
you visual cues as to the person's interest. Start up a conversation based on
the items in that case. Someday ask for the key and together re decorate
the items in it. There are no rules about what goes inside it.
Next, enter the room and look
around, be somewhat snoopy, look for visual cues of interest. A knitting
project, a picture of cats, a forgotten cup of tea can cause you to think of
things to say. If the room doesn't provide enough articles for conversation then consider
leaving the room. A new conversation abounds with a change of scenery.
IF all else fails bring a real conversation starter
with you. Good ones are children, neighbours, and friends. The best by far is a
stranger! My sister brought a stranger once and the gossip never ended!
For more practical tips check out Alzheimer's Ideas
That Help on Facebook, the link is https://www.facebook.com/Ryleysforum?ref=hl
|A Christmas Healing
Four years ago yesterday, I drove my confused, frightened
and delirious mother to our local emergency hoping to for a simple cure for her
strange behaviours and the sudden change in her personality. Mom never came
back home to live with us again. As you know if you’ve read our story after a
very rocky road, she settled into a wonderful long term care home in our town.
No other time of year do I feel the pain of this experience
greater than at Christmas. It isn’t only that we lost the wholeness of my
mother, her support, stories and presence, but also, we lost our foundation.
The family home was sold, traditions were lost, memories could no longer be
shared – in many ways I felt like Christmas as I had known it was lost too.
For four years, I have found Christmas a sad time – a time
when the loss of my mom’s wholeness and the loss of other loved ones like my father
and in-laws was so strong it made my heart ache. Putting up the Christmas tree
was something that brought tears to my eyes. Buying Christmas presents and
preparing for the family meal felt more like a chore than a joy.
But this year, I noticed the healing is happening. There is
a little warmth and hope returning. It isn’t everything I want for Mom, but I
can enjoy taking part in the parties at her long term care home without wishing
and regretting she could be home with us. New traditions have replaced old
ones, babies have been born – nieces and nephews and best of all a new
grandbaby for me.
I guess my mom herself likely walked this journey when her
own parents and loved ones passed on and she became the mother and not the
daughter. She knew what I know today – that life goes on and even with all the
changes there is still beauty to be discovered even in the pain.
Wherever you are in your journey, whether you are surrounded
by the grief and loss, enjoying the moments or just beginning to see the light
again, I wish you all a very Merry Christmas and Happy New Year!
|The Pleasure of Remembering
I try my best to write from a positive lens. Everyone in
this room knows that aging, sickness, dementia and loss is rotten. It doesn’t
seem helpful for me to state the obvious. So, as best as I can, I attempt to
find and share my observations from a place of hope.
That might be why there are gaps in between my writings.
Sometimes it is difficult to find the hope in Mom’s dementia. As we come around
the corner to Canadian Thanksgiving, sometimes it is difficult to FEEL
While my mother’s capacity has diminished, for the most part
as she carries on she is content. She smiles and enjoys the people in the LTC
home, she enjoys music, exercise, baking, dancing, church services and Bible
studies, joking with the staff and visiting with family. She lives safe and
warm in her big bright private room and yet so much of her is gone. I miss
those parts of Mom so much.
In John Green’s book, The Fault in Our Stars, (without
spoiling the ending) one of the characters in the book reflects on what it
feels like to lose someone you love by stating, "The pleasure of remembering had been taken from me, because there was
no longer anyone to remember with. It felt like losing your co-rememberer meant
losing the memory itself, as if the things we’d done were less real and less
important than they had been before.”
I couldn’t have said it better myself!
The loss of Mom’s memories is also the loss of mine. Not a
single person in the entire planet shares the memories that I share with Mom.
She was there when I was born weeks early at 3 lbs 4 ounces and placed in an
incubator. She was behind the camera as I got on the bus for Kindergarten and
rocked me in the green chair when that mean girl on the school bus slapped me
in the ear. She was my biggest champion for years, my confident and friend and
the voice in my head. So many times I struggle to recollect a memory or think
to share something about a person only we both know – only to realize I have
lost the pleasure to remember with Mom – as if the moment never was.
Last week, when I visited Mom was a little edgy and
impatient with me. She was hard to find and I found myself too tired to really
look for her. But some days, I get a
Two weeks ago, my favourite smiling-red-head-singing,
Bible-preaching-volunteer was at the nursing home leading a Bible study and
sing-song. The songs she was singing so
joyfully were right out of Mom and my past. Praise choruses written in the 70’s
and 80’s and old beloved hymns that transported me to the days Mom and Dad
pastored the Monkton Pentecostal Church.
For just those few
moments we were transported. Mom sang every word of those long (for me)
forgotten songs at the top of her voice, smiling…and co-remembering with me.
The interaction so special I almost wanted to hold my breath…and then it was
I am not a wonderful daughter. I get tired, impatient, sad
and sometimes I even have to stay away. But, thankfully when I dust myself off
and try again – I blessed and for just that moment I "see” her (the Mom who has
gone away) ….and I remember who I am.
Some days, I can forget about the loss, beat back the longing to curl up beside my mommy and be the daughter and not the parent. Some days, when we visit we can just plain connect. One human to another.
Yesterday was one of those visits. I arrived at the Long Term Care home to find Mom awake and alert. Since much of her conversational skills are gone, talking about any one topic for more than a sentence at a time is difficult. But yesterday, there was a book.
The book on the table was three stories merged into one book with a scattering of drawings throughout. First it was pictures of lions and jungle animals, second of historical black and white photos of the Rockefeller family and finally drawings of people riding horses and carriages. Since reading the book wasn't a practical option, we started making up our own stories - silly stories at that.
In that moment, I was able to find her, connect with her. It was nice.
There are days, just like you, that I really wish this long journey could be over. I wish that Mom could be freed from this body bogged down by this horrible disease. But yesterday, I was grateful." No Mom, you can't remember your grandchildren, what you had for lunch or very much about me, we still can share the love of two people who share a beautiful history together.
Even if one of them doesn't remember it.
A very lovely relative of mine makes the long drive several times a year to visit my Mom. I'm always happy to hear she is coming - even though I'm not usually there to participate. It feels so right to know people who really "know"ť the whole Mom are spending time with her, that she is remembered and not totally lost. Her emails and conversations with me before and after her visits are always so encouraging.
After this time, she writes, "As always, I enjoyed the visit. And keep one thing in mind - it's much easier for me than for any of her children, since I come with no expectations, and no hurt if she doesn't know me or doesn't engage. I do fully "get" that piece!"
She so nailed it! Even when we love them, even when the visits are going well, even when there is not a crisis, visiting is hard for children and spouses.
It's why I seem to be able to finish every single dish in the sink, fold every towel in the dryer and reply to the most redundant email before I can get myself out the door to see her some days. (And some days are better than others as you know.) It hurts to see her live like this. It hurts to lose your mother a little more every day.
No matter how deeply I bury them, mask them or rationalize them away, I too have expectations of my Mom. I so want to be known, engaged, loved, mothered and remembered. The loss lives every day under the surface, even when I don't acknowledge it.
But, Mom and I do have good visits most of the time but the best ones happen when I too come with only one expectation and that is to make a connection.
Some days those connections are more complete than others. Some days that connection is full conversations, laughing, dancing and singing. Other days, it is simply the knowledge that we held hands and that possibly I was able to bring a little comfort and dignity to her on a difficult day.
Those connections, no matter how difficult are a beautiful gift for which I am truly grateful.
Well, I just wanted to write to tell you that you became a great grandmother again. Little Grace came into the world on Mother's Day morning making me a grandmother for the first time and I am certain now I will never be the same!
It makes me a little sad that I can't share this experience with you fully, I am not sure how many times I've told you my daughter (your grand daughter) is pregnant - lots anyways. At this point although you recognize my kids, you can't seem to make sense of who everyone is anymore...but that's ok.
Still, though I am happy. Becoming a grandmother has made me remember things I had almost forgotten about you. As I come alongside and support my grown daughter, stories of you come flooding back. I remember how you loved, encouraged and took care of me and everything so I could just learn how to nurse the baby and get my confidence. You were a great mom to me. You are a great mom to me - even as you slip away.
I am so thankful for you!