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adjusting to dementia

Mom's Thanksgiving Gift



Hello there fellow caregivers (care partners),

I know it has been a long time, since I have written to you in this blog I started oh so many years ago; this blog designed to fight against the dementia that steals my beautiful mom bit by bit while leaving her body intact. Sorry for my absence, it feels kind of good to be back.

Seven years ago, when I began this blog back in 2011, I couldn’t stop writing, sharing resources, reading everything I could and passing it along.  I was compelled to begin this blog. It wasn’t a hobby – it was a compulsion. (My husband described it once as that time I was trying to save the whole world). I guess it was my way of processing, of grieving and of trying to find my way back to the center again and make a little sense out of the tragedy unfolding.  I also wanted to help people so they have to go through some of the difficulties we experienced as a family – mostly just because we didn’t know what to do or where to find help.

It is hard to imagine that right about this time seven years ago, my mother began unraveling. I am sorry that none of us knew what was happening. I am sorry that none of us knew what to do.

But, then one day a little more than a year ago, it became more and more difficult to write!  Many times over the last year I sat down at the computer with an idea, a concept that would be worth sharing and I couldn’t bring myself to type it. I just felt so tired. It was as if I had lost my ability to form the words to describe what I was feeling.

Recently however, it occurred to me that I began losing my voice around the same time that my mother began to lose her ability to communicate verbally with me. . . perhaps without her voice in my head – there were no words to write…but today for the first time in a long time, I feel like writing. So, here I am.

So, I guess if I was describe what I feel and where I am at as my mother’s caregiver today is:

The number one go-to-emotion I wrestle with on a regular basis is GUILT. I feel guilty most of the time. I feel guilty for not making enough time for my mom. As a busy mother and grandmother who works full time, I do not have the time to spend or the capacity to do the fun and creative things with Mom that she deserves. I hold her hand, I try to engage the person within, but I am usually left with the overwhelming sense that I do not ever do "enough”. Sound familiar?  To make matters worse, this guilt drains our motivation to visit even more, making it harder than ever.

This Thanksgiving weekend (for example) despite my children and family all being home, in the happy chaos of hosting it all, we never got to visit my mother. On Monday, after delivering family members to their train and tidying it all up, I ended the day on my couch in track pants the thought resonating in the back of my mind, "Mom didn’t get a Thanksgiving this year” followed by "I suck as a daughter.” This is the challenge common to all caregivers. We didn’t want this disease to slowly chip away and dissolve the personalities of those we love. We never wanted them to have to live alone, apart from family in a long term care home. We feel sad because it is sad.  Yet, guilt is something we need to manage and to wrap our heads around so it doesn’t take us under. Even after seven years, I am working on it. 

 My second emotion would be CONCERN. This one isn’t too bad. It has watered itself down from panic, exhaustion, worry and regret. Although I admit I still wrestle with guilt, I have the great contentment of knowing mom lives in a long term care home that is intimate and loving, a place where her care is good, her food is good and people who know what she likes provide her activities to do.  I know she is safe and even in her diminished state, she is content.

 So, what am I concerned about? Firstly, the most obvious one – that someday she will die. What will that be like? Will it be soon or will it be years from now? Will it be difficult or simple? Will I be there when it happens? (And the list goes on.) Secondly,  I become concerned when she is sick or distressed – whether it is from a fall, a seizure (a newer development that occurs from time to time), when she develops and illness or develops a delirium, when she loses weight, when she stopped talking, walking and feeding herself or just seems sad and distant.  These things used to weigh me down, keep me awake at night – now they are just the background noise of my life. We cross these bridges as they come. This is our life now. It is what we do and I am "ok” with it. I guess that is what being my mother’s caregiver really is all about.

While It might seem a little contrived, my final key emotion is definitely LOVE. I miss the woman my mother was. I miss being mothered and "cared for” and I so totally adore her! I love this woman I get to hold hands with and on a good day even share a laugh with.  I am grateful that at times I still get to see a glimpse of the mother and person she used to be –  through the sparkle in her eye, the tap of her foot, the squeeze of her hand or her mischievous grin.

 Even when she forgets it all, I have never forgotten her and I never will.  Maybe this is the best Thanksgiving gift I have to offer mom this year.

 Be encouraged!


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Missing Mom


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.


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Dementia Lessons


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.

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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. :)


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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!



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Birthday Dementia Style


Sunday was my mother’s birthday, Easter Sunday.

How do you plan a birthday celebration worthy of 83 years, for a woman with dementia?

The answer is you don’t.

Last year at this time my mother was still in the hospital fighting delirium and paranoia. Determined not to let a little thing like dementia and psychosis ruin her birthday (can you say denial?) I planned a big family celebration. All available family members gathered in the meeting room down the hall from Mom’s room, complete with cake and decorations. The only thing we didn’t have was Mom. In her fragile state, the whole thing left her overwhelmed. She wouldn’t open her eyes, talk to anyone or get out of bed.

Not one of my best parties.

So, this year family members wisely decided to visit Mom in waves throughout the week offering their own congratulations. Still, I wrestled with the urge to make it special – to make it the same as it was before Mom had dementia.

Walking through the department store searching for a gift for her I pondered this very thing. What do I buy for this new version of my mother?

Should I buy her a picture for her room? – No, changing her room disorients and confuses her.

Family photos? – No, the family photos she has are stashed away in her cabinet. She can’t remember who all the grandchildren are (since they keep changing) and looking at them frustrates her.

Special mementos? – No, they would be stolen.

Technology?  – No, it will start a fire if it is plugged to the electrical socket.

I could take her out? – No, She’s using a walker now and out-trips take more out of her than they used to. Several weeks after I take her out, she puts her coat on each time I visit, thinking we are going out.

And I realize I am trying to celebrate a personality that no longer exists. This is birthday – dementia style.

So, we begin again. We simplify, we downsize and we stop trying to make it something it is not. We replace the big family dinner -complete with the roast and gifts – with a small cake, a big musical card and a beautiful bouquet at nursing home table.

But the one thing that remains – and always will remain – is love.

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