I have written about this before,
but it has become somewhat of a preoccupation for us.
And maybe as I get older and start to feel the gap closing
between my own age (mid-fifty)
and our more senior loved ones
I start to think about it from the perspective...
if this was me, what choices would I have made?
I wrote in a post that seems so long ago now,
about these two women in our lives,
step-mother-in-law and mother-in-law
that are living with dementia.
Living with dementia....what does that mean.
Well, one of them seems to be living with it better
than the other
but it is what it is.
A return to child-like behaviours in one case
and trapped in a body and mind in the other.
What strikes me most is the recognition that we sometimes
don't have the opportunity to make any choice at all.
Although in looking back, the signs were there.
Repeated stories...
on loop we would say....
Greta, (us smiling) you already told us that story today.
But we never really minded and we all recognized that these were stories of her life.
We just didn't realize that perhaps
what she was feeling
was a tenuous hold on that life, those memories, her story.
Maybe she was not telling those stories for us at all.
The scrabble board has been pushed to the side now.
Last year, her pattern was constant.
Sit in the kitchen nook.
Arrange letters on the board,
some recognizable words popped up,
but gradually they became a random string of letters.
We would clear the board when she left the room
because a completed board
caused her worry as she had nothing left to do there.
An empty board meant she had to get busy and fill it in.
Now though, not so much.
Car rides are at the top of the list right now.
She will sit in the front living room looking out the large windows
in anticipation of someone coming into the driveway.
At least that is what I believe.
She loves to get in the car
and then silence.
She may count signs that she sees
or conjur up a comment that seems to float in from somewhere.
We respond favorably and attempt to move that into a full discussion
but the fragment of an idea
was just that..... a fragment.
My father-in-law uses the analogy that dementia
is like fog rolling out and coming back in.
Yes, he lives on the edge of water so that fits perfectly for him
and I grew up there so I can fully understand why he says that.
There are times when everything seems so clear
and coherent
and we were all wrong,
she is really not that bad,
we gather for family dinner parties,
she sports her favourite red hat,
she laughs and smiles
and admires the sparkly chandelier
that she appears to be seeing for the first time.
but then....
the fog rolls in again,
clarity disappears and a certain dullness takes over.
And it feels grim.
Really grim.
And then I am back to wondering what I will do in planning my own future.
What lies ahead for me and my own children?
And I wonder why we don't talk about it with our children
and provide them with the answers now
so they don't search for them later.
It seems that dementia makes people uncomfortable.
I took her to a small bakery for lunch one day,
fingers crossed that she would welcome this change
and at first it seemed okay
but it quickly
was not.
Nothing was quite right,
she took no pleasure in the smells.... I know that is a documented element of dementia
but what struck me most were the stares.
The sort of
how can we enjoy our meal-now-stares
Yes, she was restless
Yes, she was somewhat dramatic in how she ate her sandwich
avoiding the crusts.
But this was her community
And once upon a time they were proud that she was who she was
A strong advocate for environmental change
A member of the hall of fame
A member of the Canadian ski team
A mother to 7 children
and yet...
Well, that doesn't seem to count anymore.
And perhaps that is just part of the whole aging "thing".
Maybe I am supposed to just accept that.
It is after all a new world right?
Social media...
young people
and
people my own age
are suffering from FOMO (fear of missing out)
and really that seems to be debilitating.... doesn't it? Isn't it?
I see that right before my own eyes,
friends with phones dinging with banal messages of
hello,
where are you,
what ya doin?....
I am not the first to write about this
nor will I be the last...
I hope.
But, I think we need to discuss this,
openly,
honestly
and with care and concern for those people out there taking care of
someone with dementia.
Just the other day,
I noticed a thought that I was struggling to hold on to,
a memory
that lingered on the periphery of my thinking
as if taunting me,
demonstrating to me
what it would be like if I was unable to concentrate long enough
to bring it into focus.
I did,
but that small bleep in time
felt very telling.
It led me here,
to this page.
Not sure what any of that means
but I do know this,
moving forward I walk with passion
and with an understanding
that this is it,
right now and right here....
As it has always been...the future is one big unknown.
but it has become somewhat of a preoccupation for us.
And maybe as I get older and start to feel the gap closing
between my own age (mid-fifty)
and our more senior loved ones
I start to think about it from the perspective...
if this was me, what choices would I have made?
I wrote in a post that seems so long ago now,
about these two women in our lives,
step-mother-in-law and mother-in-law
that are living with dementia.
Living with dementia....what does that mean.
Well, one of them seems to be living with it better
than the other
but it is what it is.
A return to child-like behaviours in one case
and trapped in a body and mind in the other.
What strikes me most is the recognition that we sometimes
don't have the opportunity to make any choice at all.
Although in looking back, the signs were there.
Repeated stories...
on loop we would say....
Greta, (us smiling) you already told us that story today.
We just didn't realize that perhaps
what she was feeling
was a tenuous hold on that life, those memories, her story.
Maybe she was not telling those stories for us at all.
The scrabble board has been pushed to the side now.
Last year, her pattern was constant.
Sit in the kitchen nook.
Arrange letters on the board,
some recognizable words popped up,
but gradually they became a random string of letters.
We would clear the board when she left the room
because a completed board
caused her worry as she had nothing left to do there.
An empty board meant she had to get busy and fill it in.
Now though, not so much.
Car rides are at the top of the list right now.
She will sit in the front living room looking out the large windows
in anticipation of someone coming into the driveway.
At least that is what I believe.
She loves to get in the car
and then silence.
She may count signs that she sees
or conjur up a comment that seems to float in from somewhere.
We respond favorably and attempt to move that into a full discussion
but the fragment of an idea
was just that..... a fragment.
My father-in-law uses the analogy that dementia
is like fog rolling out and coming back in.
Yes, he lives on the edge of water so that fits perfectly for him
and I grew up there so I can fully understand why he says that.
There are times when everything seems so clear
and coherent
and we were all wrong,
she is really not that bad,
we gather for family dinner parties,
she sports her favourite red hat,
she laughs and smiles
and admires the sparkly chandelier
that she appears to be seeing for the first time.
but then....
the fog rolls in again,
clarity disappears and a certain dullness takes over.
And it feels grim.
Really grim.
And then I am back to wondering what I will do in planning my own future.
What lies ahead for me and my own children?
And I wonder why we don't talk about it with our children
and provide them with the answers now
so they don't search for them later.
It seems that dementia makes people uncomfortable.
I took her to a small bakery for lunch one day,
fingers crossed that she would welcome this change
and at first it seemed okay
but it quickly
was not.
Nothing was quite right,
she took no pleasure in the smells.... I know that is a documented element of dementia
but what struck me most were the stares.
The sort of
how can we enjoy our meal-now-stares
Yes, she was restless
Yes, she was somewhat dramatic in how she ate her sandwich
avoiding the crusts.
But this was her community
And once upon a time they were proud that she was who she was
A strong advocate for environmental change
A member of the hall of fame
A member of the Canadian ski team
A mother to 7 children
and yet...
Well, that doesn't seem to count anymore.
And perhaps that is just part of the whole aging "thing".
Maybe I am supposed to just accept that.
It is after all a new world right?
Social media...
young people
and
people my own age
are suffering from FOMO (fear of missing out)
and really that seems to be debilitating.... doesn't it? Isn't it?
I see that right before my own eyes,
friends with phones dinging with banal messages of
hello,
where are you,
what ya doin?....
I am not the first to write about this
nor will I be the last...
I hope.
But, I think we need to discuss this,
openly,
honestly
and with care and concern for those people out there taking care of
someone with dementia.
Just the other day,
I noticed a thought that I was struggling to hold on to,
a memory
that lingered on the periphery of my thinking
as if taunting me,
demonstrating to me
what it would be like if I was unable to concentrate long enough
to bring it into focus.
I did,
but that small bleep in time
felt very telling.
It led me here,
to this page.
Not sure what any of that means
but I do know this,
moving forward I walk with passion
and with an understanding
that this is it,
right now and right here....
As it has always been...the future is one big unknown.
It is sad, Donna, and I know it. My grandmother has it, and I use to work in that population as a social worker. The other day, I read they are not so far off from a cure, but then I thought that would depend on what type. There are so many types. The manageable diseases that can lead to it... diabetes II and high blood pressure... then the genetic causes... xoxo Su
ReplyDeleteSu, I worry about the number of individuals struggling to care for a loved one. There are not a lot of services that provide quality home care. It seems that the numbers will make it appear worse before better.
DeleteDonna, your post today is heart wrenching and thought provoking. I think about this subject a lot, as Dennis and I are in our golden years. We recently read Dr. David Perlmutter's book "Brain Grain" where he addresses brain function from a dietary standpoint. Very interesting, and we're following his nutritional advice. I'm sorry this is happening in your family, and I understand your frustration with the lack of quality home care. I had a neighbor once whose husband had Alzheimers. She kept him at home as long as possible. I felt so sorry for her. She had family and friends who came occasionally to give her a break, but he was so angry whenever she left that it was very difficult for substitute caregivers to handle him. He became so regularly violent that they finally had to put him in a care center. You're right. . .the future is unknown. We're doing all we can to stay healthy and hopefully not be a burden to our children. Beyond that it's out of our hands. We pray and trust God with the rest. Love to you sweet friend. ~ Nancy
ReplyDeleteThank you for sharing your thoughts on Dementia in this post Donna. Your story made me sad and brought tears to my eyes. It is a fear of mine to get it as it runs in my family. My older sister now has Alzheimer's and she is very non communicative/non verbal, which is so difficult. One can't carry one a conversation with her as she cannot find the words so will simply say "yes" or "no" and laugh. Sometimes we'll get a short sentence from her. Her husband is caring for her at home and they are in their early 70's. I too have those moments where I wonder if my lack of remembering something or finding a 'lost' word is a hint of what may come to me eventually. It is a scary thought! I try to keep my mind active but I know this disease just sneaks up on a person with subtle changes. I hope my children understand this disease as they saw both their grandmothers with it and some day they may be caring for me or my husband. This is a very special post and I really appreciate your honesty. Take care. Hugs.
ReplyDeleteUntil someone has to deal with it themselves they have no idea what it's like. A caregiver can be just as confused and in need of help, support, a break, but we are so overwhelmed by a health care system that is ready to collapse there is no timely response. Often left to deal with amongst a few like minded souls, sometimes with long distances etc to care facilities or rehoming programs, so few spaces. As readers we offer you our support, we are here to listen anytime. Hugs and love to you and your family. Patty/NS
ReplyDeleteMy grandmother will turn 96 March 18. Fortunately she's as sharp as a tack. Her only issue is she sometimes gets her days and nights confused: she lost most of her sight due to a stroke several years ago. We're so fortunate.
ReplyDeleteThis is the most well-written and touching post. God bless you for the care you're giving your MIL. I'd write more, but my youngest had a devastating day today and was humiliated publicly. She just came downstairs for comfort.
xo,RJ
I think it is very important that dementia is an ongoing topic of discussion. If my mother had told us her views and wishes should she fall victim to it, I would have been better able to care for her. My indecision and guilt was heart wrenching for both of us. I'm 64 and it is time for me to open the discussion with my daughters. This is a beautifully written piece.
ReplyDeleteThinking of the future terrifies me, so I really relate to what you wrote in that post. My grand-mother is slowly loosing touch with reality and it's sometimes very difficult to know what to do. She isn't aware of it, so she says she can perfeclty live on her own, but we can sometimes feel that she isn't perfeclty herself anymore.
ReplyDeleteThank you Donna for a beautifully written and important post.
ReplyDeleteDonna I am so floored by the beauty and sadness of your words. My Dad's mother--whom I didn't really know--slowly descended into the world of Alzheimer's and your vivid description of your MIL reminds me of my Dad's experience. When I look at the pictures you shared of the young, vivacious woman your MIL once was, I imagine how hard it must be some days...to reconcile this confused, fragile, sweet woman of today. You are so incredibly empathic and you have such warm eyes for her failings. Seeing the 'little things' in her behaviors. And you raise such powerful questions about the world we live in today. So youth obsessed and so distracted by the virtual realities of social media. It's the opposite of being fully in the present moment which is where sensitive caretakers must function.
ReplyDeleteI have my own fears about dementia knowing that my paternal grandmother developed it late in life--I think of Alzheimers as the condition that must not be named, lest I draw it to me-and so I seldom say that word but I think about it. I have those moments when I'm telling a story and can't remember the name of someone and I worry. Could this be some sign?
Thank you so much for writing this. I wish everyone would read it--young and old--because it's about real life and real love.
xo
Leslie
ps been in and out of the blogging world and I've missed you!
Beautiful and earnest. My perspective is probably not so common....I had a significant head injury a few years ago, and the prognosis was early onset dementia. Not great at 48 yrs. to hear....but I chose not to let that settle in. I am still healing and my memory is gathering remarkable strength. My meditation practice keeps me grounded and safe with where I am....right now. xo
ReplyDelete