Wednesday, 27 September 2017
Care partner stress is real, sometimes intense and wearing. When you are in the middle of the battle, you don't want to hear "10 Ways to Beat Caregiver Stress" because most of them don't speak to your situation, and you already know that stuff anyway. You want to hear how to get through today.
I have a friend who is living with the pulling and stretching and demands and worry of a severely sick husband, and I was thinking about her and prying for them today. I asked myself, "What helped?" all those years ago. What made a difference, and what stands out to me today?
Those tiny, special moments when you were able to change the horror you both were living with into something special that touched you both.
Here are a few thoughts.
Like many terminally ill people, Bill wasn't eating well. Something would sound good, but by the time I prepared it, he wasn't hungry. It broke my heart to watch his face thin to gaunt. He used to enjoy his food, but now a liquid supplement was the best he could do most days. Then one day, he said he was craving lobster.
A few years earlier, he'd gone to Nova Scotia on a "bucket list" journey to visit an old guitar teacher. While there, he'd feasted on seafood in all its delicious forms. I cooked fish frequently and sometimes we splurged on scallops, but I'd never cooked a lobster. The thought of it kind of horrified me. Feeling foolish in front of the counter of an unfamiliar grocery store, I explained my predicament to the server, and he told me how to prepare it. That night, I spread a lobster dinner in front of Bill, complete with the crackers and little forks to scoop it out. It took him over an hour, but he demolished that lobster and ate more than he had in weeks. Every time I open the cutlery drawer and see the little picks and forks, I smile and remember.
One of his last hospital visits involved a week on his back. Because of a procedure they were doing, he couldn't sit up, and it made a difficult season more wearing. Each night I would rush to the hospital after work because he'd been alone all day. In the midst of this pain and stress, we developed a game. His water was restricted, but he could have a few ice chips every hour. I would toss them through the holes in his oxygen mask and he would catch them with his mouth. As silly as it sounds, I remember giggling together when the ice chips missed their mark.
During an earlier hospital visit, he complained about the hospital food. No surprise there. It was pathetic. He'd already dropped so much weight, I worried that he would get sicker from not eating. One night while I was visiting, he mentioned lasagna. On the way home, a crazy idea occurred to me, and I wondered if it would be possible. I stayed up late that night and crafted a lasagna in a small casserole dish. The next day, I kept it in the fridge at work until it was time to go. Then I heated it to a burning fire, wrapped it in the many towels I'd brought and headed to the hospital. I even had china plates and our own forks and knives. When I arrived and unwrapped it, it was still steaming, and we enjoyed a lasagna dinner together. Again, he ate well that night, and I always remember the look of pleasure on his face as he took the first bite.
One of the men at church asked if he could put the word out by email to pray for Bill. Of course, I was delighted, and I began to receive email notes of encouragement from far and wide. Some people wrote out their prayers, and we heard from several people who hadn't been in our lives for years. I realized this was blessing me, but Bill wasn't getting the benefit, so each night when I went home from the hospital, I would print off emails and glue them in a scrapbook. At the hospital, I read all the notes and Bill was touched by the caring of so many people.
Just a few weeks before he died, it was Thanksgiving. One of our fall family traditions was to visit a local apple farm. We loved the place, and our kids had grown up with at least one visit a year. This year, Bill wanted to go before we ate our Thanksgiving dinner. Really? He was so thin and weak and wasn't really eating apples anymore. But dreams overtook the practical, and we headed out. A warm, beautiful day, it looked like everyone in our community thought this was the day to visit the apple farm. We trudged through the parking lot, and worry consumed me as he stumbled along. Near the entrance was a huge log, and Bill said he would sit there and watch while we went in. I rushed everyone through our shortest ever visit, grabbing a few apples, some cider and a jar of jam. Anything he might like. He seemed content just to be there, sitting on the log. Getting back to the car involved another adventure, as he was already tired, but he was glad to have gone. When he died a few weeks later, the apples were still in the fridge.
A few weeks ago, we went to the apple farm as a family for the first time since that last trip. I stood for a moment and looked at the log where Bill sat and remembered.
Memories. As a stressed out, barely-making-it-through-the-day care partner here is my advice to you: make memories. Take the time to do little spontaneous things together like the ice chip game, or ridiculously impractical things like the apple farm.
Because when the day comes that you are looking back at this time from the other side, you will be thrilled that you did.
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Care Partner Wednesday--Lobster, Lasagna, and Memories
Thursday, 21 September 2017
I probably make a thousand choices in a day. Most of them are insignificant and don't even hit my radar. Which of my flavoured coffees will I have this morning? What will I wear? Will I have a salad or a sandwich for lunch? After dinner, will I read a book, watch a movie or knit? What time will I go to bed?
Sometimes, life brings more significant choices. What kind of car will I buy? How will I solve the problem of the needed renovations in my basement? Where will I go for vacation?
For our elders, the ability to make choices shrinks significantly. Physical frailty, and sometimes cognitive decline often mean that others are making choices for them. Some can't manage their own care or find the process of making decisions overwhelming. Choices, and the ability to make them become more important.
"Autonomy is a domain that is challenged early, and often severely, as a result of societal stigmas surrounding dementia. Loss of autonomy is also a common source of anger and resistance. We tend to think of autonomy in terms of big decisions, but autonomy can be created on many levels, and most people have the ability to make choices, with proper communication and support."1
The problem comes when care partners, professional or family, come to believe that because an elder has challenges, all the decisions need to be made for them. The result is an elder who feels helpless. Sometimes "learned helplessness" results when a task is completed for an elder when they could do it themselves, given time and support. After a few attempts, they give up and soon can no longer complete the task. This leads to another of the plagues--boredom.
Here are some examples:
An elder likes to set the table. It's imperfect, and some of the utensils are missing. Do we go back and complete the job, or make a suggestion like, "Thanks so much for your help, Jane. Here are some more spoons to put in these places."
Buttoning a shirt is possible, albeit slow for an elder, and sometimes the wrong button gets in the wrong hole. Do we fix it, or, knowing this is an issue, sit with them and suggest which button goes where?
I am guilty of this one: an elder hesitates with their speech, and sometimes has difficulty finding the words. Do I supply what I think might be the words, even if I'm usually wrong, or wait?
Joan always drinks tea with lunch. Do I automatically pour her tea, or do I say, "Joan, would you like your usual tea today, or would you like a cold drink?"
Joe's family know he was always interested in trains, so they are surprised and disappointed when they bring in his train magazines and he shows little interest. He's fascinated, though, by a visiting dog.
The basis of choice is respecting the personhood of the elder. Respecting the time it takes to make the choice. Giving opportunities to choose when the choice seems obvious. Realizing that choices change.
Choice. Make it as person-centered as possible.
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Care Partner Wednesday--Choices
Wednesday, 13 September 2017
My friend, who I will call Jane, has been going through hell as a care partner. Her husband is suffering from a serious form of brain cancer, and their lives have been one crisis after another lately. Surgery after surgery, infection, seizures and multiple hospitalizations. Each day is a roller coaster of emotions, as she tries to negotiate devastating decisions while encouraging him. It's exhausting in every way.
Recently, Jane told me of several scenarios where "friends" questioned her decisions. They stopped visiting. They refused to go out with her husband because they felt uncomfortable. They said she shouldn't have encouraged her husband to have his latest surgery (although it saved his life.) They said he didn't want more surgery, although he had expressed many times that he wanted to live. They made her question herself at a time when she is feeling most vulnerable, and most in need of support.
These "friends" aren't the kind who read what I have to say, but maybe others have experienced this incredibly insensitive behaviour. So, to these "friends" I say, "How dare you?"
How dare you presume you know best? You have no idea the pain this couple is going through as they navigate this difficult journey. I hope you never will know how this feels because I doubt you could handle it with the grace Jane has.
How dare you question these decisions that are made through pain and tears? What gives you the right?
And at this time, when your friend needs the gift of your friendship more than ever in your relationship, and his wife needs your support and perhaps a break for a few hours, what gives you the right to withdraw, because you feel uncomfortable?
Dear "friend," you are not a friend. I have told Jane to get new friends, and that's happening. The couple who visit her husband in the hospital. The ones who bring meals or offer to shop for them. The ones who listen. I'm thankful there are people in their lives that go beyond themselves and what is comfortable and give to Jane and her husband. I am praying God sends more--an abundance of real friends who care.
Jane's experience can teach us all. When someone you love is a care partner:
1) Be there. Find out what they need, however practical, and actually do it. Shop, make dinner, clean the house, babysit--these gifts will never be forgotten.
2) Never, never say, "Call me if you need something." That's putting the responsibility on the already overburdened care partner. Instead, find out what they need and do it.
3) Listen. Don't fix, don't judge, don't give opinions unless asked. Just listen. It's truly a gift.
4) Be thankful. As you support your friend going through their journey, thank God for every day He has given you. Never take it for granted.
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Care Partner Wednesday--Dear "Friends," How Dare You?
Wednesday, 6 September 2017
Have you ever had your shoelace come undone at a time when it's impossible to stop and do it up? Your arms are full of parcels, or you are standing on a crowded subway platform? There is nothing more awkward than trying to two-step around a dangling shoe lace while attempting to keep your body upright.
That's kind of like my life right now.
There are loose ends everywhere. Small, annoying issues that need almost daily follow up, and big, audacious problems--that need almost daily follow up. I push one ahead by a centimetre and another stubbornly drops back two centimetres. These loose ends require constant attention--phone calls, emails, follow up and more follow up. It's beyond annoying and stressful.
One of my loose ends has been my car. At almost 10 years old, she has served me well. I bought her after my husband died, trading in both his vehicles. She was my first brand new car, and my favourite colour--red. I always name my cars, and she was Minnie. Like the mouse.
About six months ago, she started to develop electrical problems. I never knew what I was going to find when I got in. One day, the radio wouldn't work. Another, the windows stopped responding. The day she wouldn't open without several tries, I stopped locking her. Horribly stressful was the day the gas cap locked shut, and I couldn't put gas in her. However, worse than all of that was the morning I started her and had to push the brake to the floor to get a response. Oh, my.
Then there are the days of indecision. Do I fix her, to the tune of several thousand dollars, or do I start looking for something new? If I fix her, will that be all that is needed for a while, or will I have more problems in a few months? If I look for something new, should it be leased or owned, new or used? What brand? What colour?
Hey, colour is important!
This shoelace was dragging in the mud, and I wasn't at all sure I could stay upright.
Prayer and consulting lots of counsellors helped me to decide I needed a new-to-me, used Honda Fit. There is a Honda dealership within walking distance, and for me, it was a good fit. (Sorry...) My son-in-law helped me work through how much I could spend and various other options, and last Saturday, we headed to the dealership.
Two important facts to note here. I had a good friend praying that God would have exactly the right car waiting for me. And I, in a tiny voice, was reminding God that colour was kind of a big deal for me. With apologies to all my friends and family who have grey or black vehicles, I hate black and grey vehicles. In my little voice, I asked God if maybe the car He had for me could be something other than black or grey. I loved my red car, but I was open to other options. Just not black or grey.
In the dealership, our salesman took us out to look at the used cars. "Unfortunately, we don't have any Fits on the lot. They go as quickly as they come in." We looked at used Civics, but they were more than I could afford. I whispered to God that emotionally, I couldn't handle a long search. He knew that, right? We went inside to compare the cost of new Fits to used Civics, when our salesman came running to us with an enormous grin on his face. "We just had a Fit brought in. I didn't even know about it!"
We went outside, and there is was. I knew immediately it was my car. Not too old, good mileage, and white. I could live with white. If we had gone to the dealership a few hours later, it probably wouldn't have been there. The car I needed at the price I could afford. And white.
I brought her home tonight. I am overwhelmed by my Father who cares about my loose ends, my dangling shoelaces, and provides the right car, in the right colour, at the right time. Just for me. This God, the God of loose ends, can be trusted with all the other dangling bits of my life.
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The Small Miracle of Loose Ends