A is for Asking, and also for Accepting

I don’t have a clue. How do I do this? How do I keep doing this? Caregiving through Covid: the challenges of 2020 have presented a steep learning curve, and some days it feels like we’re all just making it up as we go along.

A friend & mentor noted that “. . . your blog is titled "A Long, Lonely Journey," and yet so much you write about is of the connections that sustain you.” Connection: the miracle that saves me, every time I’m on the edge. 

(Sanctuary Door, Durham Cathedral)

Help.

It’s been a struggle for me to ask for help. Sometimes I’m not quite sure what help I need; often it’s just difficult to ask. (And of course I know that no one can give me what I really want - Doug to be well again.)

(2013: a pint in a pub after a 17 mile walk - tired but as cheerful as ever)

Some of the most thoughtful, most useful help has been given to me without my asking. For over a year my sister organised her work week so that she could spend every Wednesday morning with Doug. She arrived at the door, gave me a hug, and took him to her home for breakfast, an outing or activity, and lunch, giving me a block of time to mark students’ essays, write tests, shower, grocery shop, read, sleep.  She texted me photos during the morning showing my safe, happy husband.

The day I was told my husband had been allocated a bed in long term care, my best friend left her family’s dinner half-made, one daughter at a skating rink, another at a swimming lesson, rang her husband and mother-in-law with instructions, got in her car, and drove four hours to be with me as I went through the process. 

My Mum, a photographer, has made a series of note cards with pictures of Piper, and sends Doug a letter every single week. The day it arrives a staff member reads it to him, then sticks it to his wall; when I visit I’m able re-read him a selection of her letters. She’s also made a book featuring her pictures of Doug. Together, we have all been walking in Norfolk, canoeing in the Ottawa Valley, narrow boating in Yorkshire, swimming in Mexico, celebrating our wedding, my graduations, hanging out in a pub, at a picnic, on the deck. There are very few words in the book, but every page says to me: “I see you Doug. I see you. I know who are you, what you like, how you think. I see you and I love you.” 

(2020: photo book by my Mum)

(2017: selfie from a winter walk)

On Admitting I Was Wrong

 

(photo: Piper & Kitty)

The first time I started attending an educational series about Dementia, I quit. There was too much information, too soon, for me to cope with. I spent the first evening in tears (heavy, snotty, loud, unstoppable tears), and the second evening trying so desperately hard NOT to cry that I couldn’t focus on what was being said. I didn’t go back to the third session until two years later.

The moment I remember as most heartbreaking was a discussion about doll therapy as meaningful work for people living with dementia. I disagreed through my tears. ‘In my opinion, that is not meaningful work.’

‘Well, not work, exactly,’ conceded the facilitator.  

‘Nor meaningful,’ I argued. I probably fought to shut out an all too clear image of my husband holding a doll in his arms, cooing to it, singing, comforting a lifeless piece of plastic.  Even if it made him feel better, useful, less lonely? I asked myself. Well . . . Surely there had to be more value to a life - his life - than that. 

I was wrong. Completely, utterly wrong. Then, I was still trying to pull Doug back into my reality. It took me some time to understand that it’s my job, as his caregiver, to enter his reality. And it was our niece who reminded me how easy that can be. 

Of all his roles in life, I think my husband has enjoyed being “Uncle Doug” more than any other.  He has loved spending time with his nephew and nieces, and his are often the first presents opened “because you know it’ll be the best!” One summer day our youngest niece came to play. The deck was a pirate ship, the beach was a beauty salon, the lawn was a gymnastics studio, the lake was a mermaid cove filled with dolphins, manatees, and narwhals. It took me no effort at all embrace this imaginary world . . . 

OK, of course it’s not that simple. But with time, and patience, and practice, I learned how to slip away from what I consider to be real, and join Doug in the place he’s inhabiting. I can talk with people he sees (and I don’t), can “remember” a recent dinner with his (late) parents. I can carry on a one-sided conversation. 

I have never questioned my niece's love for the Douglas stuffed animals her Uncle gave her. Why did I ever think love for an inanimate object had to end with childhood? Last year I bought my husband this cat. She is loved (but survives when ignored), meows, purrs, stretches. She provides a good conversation starter, is a good listener, can be petted and carried (but also dropped). (Bonus: she doesn't need feeding, and doesn't have a litter box requiring daily attention.)

(photo: contents of box may not be exactly as depicted!)

I try to do the best I can, with the information and resources I have.  I’m often wrong; I am thankful for so many second chances.

(photo: scrapbook page - Doug & Kitty.)