Caregiver Life - Meanderings

Reposted from The Good Doctor

Thank you to “the good doctor” for this endorsement! If you wish to keep up with this blogger you may follow him at: https://www.burlingtoneye.ca/TheGoodDoctor Here is what he wrote.

Blog vol 3. 33. Dealing with Alzheimer’s Disease, Some Encouragement.

At her recent visit, Paula De Ronde, a patient of mine, brought me a copy of the book she has written, My Bert has Alzheimer’s: Caregiving is Living for Two. From 2011 to 2022, Paula was the caregiver for her late husband, Bert. She wrote down her meanderings and compiled them in a book that really captures the daily demands of being a caregiver.

Two words come to mind as you read Paula’s account: intensive and love.

Intensive – the day-in, day-out demands of being a primary caregiver, and then the community of peers and local day programs helping to share the load. The underlying thoughts throughout the entire account are the preciousness of Bert’s life and his loving relationship with Paula. One of the most beautiful moments in the book is when the day program staff sets up a date night for the couples in their care. Every detail, from invitations, decorations, menus, lighting, music, serving, then, later dancing, was done with such attention and care. Just wonderful, so inspiring.

Love – the relationship between Bert and Paula deepens through the disease. Paula’s desire to learn as much about Bert’s disease as possible in order to help him (and a lot of others) shows the depth of her love. I was especially impressed with Bert’s tender heart and love for his wife, even as inhibitions came down with the development of the disease. Bert, you are my inspiration, I hope I can be that man under similar circumstances. The love of others was expressed in real and tangible ways: the way that the PSWs (an under-appreciated group) helped Bert as he entered the long-term care facility, the daily care of looking after Bert and actively involving him in the daily routines of toiletry, dressing, feeding, and so much more.

Her tone in the book is upbeat, her sense of humour contagious. Paula has done a great service for caregivers in encouraging, educating, and especially, sharing her journey.

So many people are caregivers to spouses with Alzheimer’s or with other health concerns. This work is so important and so difficult. I am continually impressed and humbled by my patients who persevere in caring for their spouses through really heart-breaking situations. The love and care are wonderful to see.

The rest of us need to remember to support the people in these situations. We can make such a difference in even small ways.

If you would like to keep up with Paula, you can follow her meanderings at: https://paulasmeanderings.com/.

til next week,

the good doctor

The Meander: Unsolicited commendation and support encourages enhanced advocacy. This is much appreciated!

Christmas 2022

What a year!

It was too short; it was too long

It was too busy; it was not busy enough.

There were tremendous highs and the deepest lows.

All in a single year.

New IDs – Author. Widow. Honouree 100 ABC Women.

A disease gave new direction.

Love conquered.

May you have a wonderful Holiday Season whatever your celebration may be.

May your New Year be filled with new Hope, more Light, unconditional Love and PEACE!

Lasts

It is Corbert and Amy’s wedding anniversary. I smile as I sign their card. I blithely write that it is from Dad and Mom. The smile fades. In its place is not a frown but a hesitancy, a new kind of indecision wrapped in doubt and some wistfulness. The question intrudes: “Will this be the last time I write Mom and Dad?”

I send a birthday card to a niece and write, with a flourish, from Uncle Bert and Aunt Paula. Another goes to a friend and again from Bert and Paula.

Birthdays, weddings, anniversaries, sympathy, condolences, get well and thank you cards were under my list of duties and all of them were signed by me for two. It was always from two.

It is the little incidents of thought, reverie, a shiny object, a souvenir and the simple signing of a card that can bring about an extreme sense of loss. All of a sudden I began to wonder about lasts. The last hello, the last and final goodbye, the last trip to the Home, the last hug, the last farewell to the staff, the last pondering of how to acknowledge the care given to my Bert.

We sit at my Bert’s table looking out his window. A slight gust of wind and the canvass awning on the nearby balcony rises and falls. My Bert looks out and says: “The wind is strong. Look.” The wind and the movement of the awning always bring some reaction. I wonder when it will be the last time for this.

What will be the last programme we share, the last pub night, the last musical presentation? Will I be holding his hands? When will I see that last smile or hear the last: “I love you too.”

Lasts are roiling in my mind. I contemplate the last hair cut, the last foot care, the last grapes I bring to him. That brings to mind the last food he will eat and I wonder if it will be regular, mince, puree, liquid or gel. Even food foretells the decline to the end. Should I ask that his favourite foods make up his last meal? Will the last meal be regular or potage or the drip, drip of a colourless liquid?

We sit on the patio and I make sure he is out of the sun. My Bert does not tan well. He goes from pale to lobster red and back to pale quickly. I put some sun screen on his hands and wonder: Is this the last time? I glance at the rose bush which is coming out strong and already I can envision the lovely yellow roses that will bloom soon. It is a beautiful bush and again I wonder if this will be the last time we admire it together.

I shake myself out of morbid thoughts and try to substitute happy lasts. For the life of me I can’t think of any. Last of anything is a precursor to an end. In the effort to move away from sadness I find I must move away from the lasts that involves anything to do with my Bert.

Forcing myself out of morbidity I immediately think of a last that I will welcome. Oh, how I will welcome the last day of Covid-19. What a celebration that would be when not just first world but the entire world is free of Covid-19? I am not sure that is possible but one can hope and dream.

What a conceit it is to think of the lasts with my Bert as being comparable to a world pandemic. Yet I think that the sheer enormity of both makes the comparison reasonable.

As I try to conjure up happy lasts I find myself reverting to endings. It seems that there are many more endings that are sad than happy. That should not be. Yet I see happy endings as fairy tales. It must be the mood I am in, the burden I carry, and the onus that sits constantly on my shoulder to be happy for my Bert. Now I appreciate how much I depended on him to enhance our natural joy. He carries so much joy in him. It is infectious. As I remember his wonder, his happiness in the smallest thing I know I have to try to maintain that childlike magic he has.

It can be wearying being happy for two.

It is Father’s Day. Along with a few gifts my Bert has received four cards. He has eyes for one card only. It is from Corbert and Amy and features his favourite pet, a dog. It is special. When you pull a tab the dog talks. It begs him to have a Happy Father’s Day, asks to be thrown a bone, pants and again the Happy Father’s Day wish.

The card is shown to every staff member; my Bert cannot get enough of it. I finally succeed in teaching him to pull the tab and he is delighted to hear the dog ‘speak’. He takes it with him to the patio. He has so much pleasure in this card that I find myself laughing along with him. He is so animated and pulls the tab so vigorously that I know the card won’t last long. That won’t matter. For now he is happy. When the card is pulled to pieces he might ask someone to fix it, but in a very short time he will have forgotten it. That does not matter either. We live in the moment. Take pleasure in the moment.

Yet still I wonder? Is this the last Father’s Day?

The Meander: Like floaters in the eye the worry about lasts hovers constantly but unobtrusively in the background. You almost forget they are there. Almost.