Wednesday, 29 July 2015

Carepartner Wednesday--The Care Partner's Alphabet--W

W is for wisdom.

Since the first day I walked into Christie Gardens, full of both hope and almost crippling fear, the residents have taught me many life lessons. They shared their wisdom, sometimes intentionally, but often without knowing it. I am the richest woman on earth because of it.

Today, I share with you some of the gifts I have been given.

Friendship Can Last a Lifetime--Betty and Dorothy have been friends since Kindergarten, and this year, they attended each other's hundredth birthday parties. So much has changed along the way, and sometimes they get frustrated with each other, but the love between them will never die. These ladies taught me that friendship is a living, growing thing that can survive all the difficulties life throws at you. It is one of the anchors that holds us together, and it holds the secrets of our history and who we are. I cherish my friends, but today I will tell them so.

Keep Living While you are Alive--This was a lesson taught to me by so many, but Bruce and John come to mind. Bruce went on a "camping experience" with us in his nineties, when he was frail and in a wheelchair. Together, he and I caught his last fish. I'll never forget the look of delight and triumph on his face as he participated in one of his favourite sports one last time. John's family knew passion for planes and took him up in one for his ninetieth birthday. When speaking of the experience a few years later, he said, "I would do it again." I know people much younger than John who stopped really living, I think I'd rather fly.

Look Beyond the Barriers--Margaret was blind, and eventually not able to walk. Years before, when she could still see, she's started to type out her memoirs for her family. These contained all kinds of delightful stories, told with Margaret's irrepressible spirit and wit. However, when she could no longer see, she stopped writing. One day, she pondered as she lay in her bed. Was there a way to finish what was in her heart, and leave that legacy for her children and grandchildren? She came up with a plan. Each night, she would phone her daughter and dictate the next section, while her daughter wrote. In a few months, they were done, and she proudly offered me a copy. It's among my treasures. As people age, there are always physical barriers. I want to live beyond the barriers.

Fight, but if You Lose, do it with Grace--When Wilma moved to the care sections because she had suffered a stroke, she was angry at how her body had betrayed her. She fought to be able to walk with a three-pronged cane and railed at the knowledge that she couldn't do up her own bra. Her inabilities angered and frustrated her. But when she realised that this was her new reality, she accepted it and allowed the love and grace within her to shine. She was the one who most effectively ministered to me when my husband died. I pray I will have the strength to fight and the grace to live with what has been given to me.

Interest in Others is a Gift--When I visited with Alice in her room, it was all about me. She knew my children's names, their ages and what they were up to. She wanted to know my weekend plans, and on Monday, she asked how they turned out. At one hundred years old, her face was animated at she listened to me talk of my life. She gave the same gift to everyone--family, staff and visitors. Everyone left feeling important, validated and special. Lord, help me look beyond myself and bless those who cross my path.

Laugh Whenever You Can--When I think of laughter, so many faces fill my mind. Winnie, who told the piano tuner who was plinking away as he did his job, "If you canna play the thing, leave it alone!" Eva who tried to set my co-worker up with a serviceman who came to fix the dishwasher. Len, who asked what I was doing Saturday night, and then said, "Want to do something?" Maggie, who danced to the piano music and encouraged everyone to sing. Marguerite, who had the most incredible wardrobe but always had room for one more...and on it goes. I've learned that laughter has nothing to do with the externals such as eyes, ears and legs that don't work. It doesn't need my mind to be sharp or my memories to remain. Laughter bubbles from within with contagious droplets splashing on everyone. I want to laugh every day until the day I leave.

"Wisdom belongs to the aged and understanding to the old." Job. 12:12 NLT

Wednesday, 15 July 2015

Carepartner Wednesday--The Carepartner's Alphabet--V

V is for value.

I have dementia. I can't remember things. I don't recognize what or who should be familiar (probably including you.) I'm also elderly, and many parts of me don't work well any more. My walk is slow and shuffling, with the help of a walker. Macular degeneration has stolen my eyesight and I don't hear well. My arthritic fingers can't grasp fine things.

How do you show me I am valuable?

Value and purpose are close cousins. If I feel I have purpose, I feel valuable. The problem, in North America at least, is that value is often tied to what I do. If I can't do much, then I must not be worth much.

So, so, wrong. Yes a lie that many seniors believe. I'm only of value if I can do.

Today, we had a birthday in our neighbourhood. It was announced on the digital screen, so people kept stopping to with the "birthday girl" happy birthday. At noon,  large group of staff marched into the dining room with a gift bag full of goodies, singing "Happy Birthday." All the other residents joined. After the meal, there were many congratulations and smiles.

That resident didn't do anything. We celebrated who she was, and the fact that she was born and lived among us. We assigned value to her.

Here are some other ways to assign value. It's sometimes subtle, but so important.

  • Watch your facial expression and tone of voice. Look genuinely happy when you see them
  • Share your life with them--funny stories about your family or yourself. Favouite foods. A funny thing happened yesterday...
  • Laugh together.
  • Listen. Sometimes you may not be able to make sense of what is being said. Make positive noises ("Hmmmm. Oh really. Wow.")
  • Listen with your whole body. Look at their body language. 
  • Do something they enjoy--together. Walk outside, eat ice cream, look at pictures.
  • Ask their opinion. There is nothing that instills value than the words, "What do you think?" or "What would you do?"
  • Boast about them to someone else. "My friend is so good at _________" or to them, "I love it when you__________"
  • Tell them. "You have added to my life. I have learned so much from you."
Value is saying, "Who you are has made who I am a better person."

Find a way (or many ways) to say that today.

Wednesday, 8 July 2015

Carepartner Wednesday--The Carepartner's Alphabet--U

U is for usual.

We all have "usual" in our lives. "Usual" is the routine we follow in the morning to get ready for work. "Usual" is the same commute every day. "Usual" is the tent peg driven into the ground of our lives that anchors us.

If "usual" isn't "usual" it doesn't ruin our day. Sometimes it's annoying, like the day the subway broke down and my commute was longer and harder. Sometimes it's fun, like the ice cap I bought today instead of my "usual" coffee.

For someone with dementia, "usual" becomes their salvation. Within the familiar places and the comfortable routines, people function fairly well. They move around the same house they have lived in for thirty years, performing familiar tasks in the same way they always have. Many times, families are fooled and don't pick up on the changes and losses, because they are functioning so well in the "usual." Let them go outside of that, and they flounder.

Because their comfort zone is the familiar, this is also a way to help with the agitation, anxiety and even aggression that sometimes accompanies the disease. There are many causes for these behaviours, but often they are grounded in the fear that comes from unusual situations where they feel out of control. If I am in a place where I feel lost and unsure about what to do and where to go, I will probably experience anxiety, I might lash out, or cry, or wring my hands. I'll definitely want to get back to my "usual" where I feel comfortable.

There is another aspect to "usual" and in my mind, this is far more insidious. It occurs in the mind of the care partner or family member who mourns the disease. It's alright to mourn, and is necessary for a period of time, but sometimes this longing for the "usual" steals everything that is left.

Here are some of the statements I've heard or read:

"Alzheimer's is a horrible disease that stole my mother."
"I lose a little more of her every day."
"We used to _____________(fill in the blank) but now she only_________(another blank.)
"I get so angry/sad/upset that she doesn't remember me or the things we did as a family."
"She's not my mother any more. I don't recognise her."

It takes every ounce of control, when I hear these kinds of things to not shout, "GET OVER YOURSELF!"

Yes, it's a horrible disease, and it's hard to watch someone you love struggle with it. But don't make "usual" your god. Don't mourn what was, so that you miss what is.

Here is what is true:
Alzheimer's is a horrible disease. It hasn't stolen your mother. She has changed and will continue to change, but she is still there, and is a gift to you. You can focus on the disease and your losses, or you can focus on the gift.

Your choice.