Wednesday, 18 October 2017
Georgina has can anxiety disorder. She doesn't have dementia, but she perseverates (goes over and over the same issue) on many troubles. It doesn't matter if all was well with this problem yesterday. Today is a new day, and you never know...
I have a long history with Georgina. Sometimes, I need to reassure her, sometimes talk to her a bit more firmly than normal, and sometimes, humour works.
Today, she was going over and over the issue of the corn on her toe, her shoes, which pinch because of the corn on her toe, and her corn plaster. "I'm not sure if it's on or it fell off."
Keep in mind this was the third or forth time we'd had this conversation. "Georgina, do you mean the corn plaster or the toe? Because if it's the toe, we really have a problem." She looked at me blankly for a minute, and then a ghost of a grin spread reluctantly across her face.
Humour worked this time.
In your entire arsenal against caregiver stress, a sense of humour is your best weapon.
I can hear the protests now. "Are you nuts? There's not a thing funny about this situation. My heart is breaking, I'm exhausted and most of the time I have no idea if I'm doing the right thing. How can I laugh?"
In many ways, that's true. But the ability to see the funny side of a situation and to laugh when crying is also an option can be your salvation. You're not laughing at. Sometimes you're laughing with, and sometimes you're just laughing. Laughter can give you the strength to go on.
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"A good laugh dissipates more dark clouds than any other one thing." - Laura Ingalls Wilder
In the stories I am about to share, the names have been changed and the people left us long ago. But the stories still make me smile.
Velma had an incredibly sharp mind until the last year of her life. She worked complicated crossword puzzles every day and had many opinions on politics and current events. She loved the symphony and was every bit a lady. Later in life she had a stroke, and her mind became uncharacteristically confused. She hoarded the garters used for the kind of briefs she wore, and was convinced the staff was stealing them and selling them on the black market. (There's a black market for those kind of things?)
One day, Velma made a slow journey down to my desk. Every step was work, but she soldiered forward, grasping her walker and moving with a slightly tipped gait. I saw her coming and wondered why she had ventured this far. In her present state, a journey like this was a lot of work. I stood from my chair as she arrived, wondering how I could help her. For a few minutes, she stood silent, although she seemed to be concentrating on something behind the desk. Ignoring my questions, she began to shake her head. She pointed to my chair. On it was a back rest which displayed the name of the company--Therapist's Choice.
"The Rapist's Choice." read Velma, shaking her head. She turned to leave, but I heard her mutter to herself, "Makes you wonder what they're doing down here."
A lady from our independent living apartments came to my desk, looking as if she had lost something. I asked her if I could help her.
"I'm looking for Ann Peachman Stewart, but she's on vacation."
"I'm Ann Peachman Stewart."
"Oh, you're Ann Peachman Stewart when she's away?"
No, I'm Ann Peachman Stewart all the time."
Brigit was a delightful blind Irish lady who lived in our dementia unit. She had strong opinions about everything, and wasn't the least bit shy about expressing them. Her blindness was recent, but because it was combined with dementia, she didn't have the heightened senses many other blind people have.
One day, the piano tuner arrived just before lunch. He began to work on the piano in the lounge where Brigit was sitting, waiting for her lunch. As he systematically plinked and plunked his way up the keyboard and down again. I noticed Bridget was becoming agitated, making "Tsk." noises and wiggling in her chair. Just before he was done, she could stand it no longer, and burst out with, "If you canna play the thing, you'd be better to leave it alone!"
Even when grief is fresh, there can be a funny side. I had a newly widowed wife ask me what to take to the funeral home. Did she need underwear? I told her to ask the funeral home. I had no idea.
But it's certainly something to ponder in the middle of the night.
And when I was at the funeral home planning my husband's memorial service, I was asked to look at urns. I burst out laughing and got a started look from the person helping me. How could I explain to her how funny Bill would have found that? He wasn't an urn kind of guy. I ended up buying boxes at the Dollar store with pictures of shells on them. Much more his style.
As you start your day as a care partner, ask God to show you where the smiles and laughter lie. It will make your journey a little lighter.
CONTINUE THE CONVERSATION: Do you have a story or two? Share with us!
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Care Partner Wednesday--The Power of Laughter
Wednesday, 11 October 2017
There are points in life when everything changes. Milestones where you can look back and say, "Here is when life was never the same again."
A diagnosis of dementia can be like that.
Probably there were months and even years leading up to that moment when you wondered, suspected or even knew, but it wasn't official. Even when there is no doubt in your mind, hearing the words from a doctor can take your breath away. Everything changes.
Many people come to this point and ask, what now? Now that we know, what should we be doing?
You may have all or part of this in place already, but here are some suggestions as you begin this journey.
1. Make sure powers of attorney are in place. Talk to your elder and discern their wishes. Do they want the family member who lives closest to have POA, or each of the children? With Skype, social media and email, families can connect immediately to discuss problems, but what if someone is needed to physically visit? All this should be considered. Do they want to set it up so any one of the POAs could make a decision, or that they all have to agree? If there are no children, is there a niece, a close friend or someone else who will assume these responsibilities? Some people have a trusted lawyer make both financial and care decisions. Whoever it is, this should be put in place immediately.
2. If your elder is still driving, the doctor who made the diagnosis will be contacting the Ministry of Transportation, revoking their license. However, you will be left with some difficult conversations.
I recently went through a month without a car after mine died. Due to a busy schedule and vacation, it was four weeks before I was able to purchase a new (to me) vehicle. I got dropped off at the grocery store and had to wait to be picked up. I missed church one week because I couldn't get a ride. I felt awkward and embarrassed asking for help in the form of rides. I hated it. It gave me compassion for our seniors who can no longer drive. Independence is tied to a set of wheels, and conversely, no car means a lessening of independence.
When this happens, talk together about a plan. Will they take taxis? The bus? Learn to use Uber? How often will the family be able to help? A plan brings some independence back to the situation.
3. What kind of supports are needed? As part of the assessment to make a diagnosis, the doctor would probably have done a mini-mental status exam (MMSE.) This is scored out of 30, and the score gives a baseline for how your elder is functioning, and some indication how much support they will need. At a certain score, the doctor will deem that they cannot make decisions for themselves, and that is when power of attorney is put in place. Another score indicates your loved one can't safely live independently. It may be, with the right supports (such as someone coming in to give medications, or do light housekeeping) independence can be maintained. Find out what's available, how to access government-funded programs, and look into the cost of accessing those that aren't subsidized. Look into things you don't need presently, so if there is a rapid change, which often happens, you are ready.
4. There will come a day when supports in the home won't be enough. You may be months or even years from that day, but you will be better prepared for it if you start thinking now. What kind of place would your loved one be happiest at? What qualities are the most important to them? What is the process for admission? What do they cost? What is available? Start your research now, before there is a crisis. Have conversations and discover what matters.
5. Read, read, read. Learn about the difference between Alzheimer's and other dementias, what kind of drugs are typically given for dementia and how they work. Ask your doctor to recommend some websites and attend classes with the Alzheimer Society. There is a wealth of information out there, and knowledge helps you ask informed questions and know better what to expect.
You are embarking on a journey. Make sure you have the vehicle you need before turning onto the highway.
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Care Partner Wednesday--After a Diagnosis of Dementia
This list is by no means exhaustive. What information or tools did you find valuable after a diagnosis of dementia?
Wednesday, 4 October 2017
"I just changed his diaper. You grab a bib for me, and I will feed him."
Is this a conversation between two parents holding their newborn infant? Or perhaps two Early Childhood educators in a daycare situation?
No, it's a conversation held between two care partners over the head of a non-verbal elder in a wheelchair.
Is your skin crawling? It should be.
We who are passionate about changing the culture of eldercare need to examine our words and ensure that they are keeping up with our passion. The elder in that chair may have been cognitively impaired and non-verbal, but it's likely he can hear. If he can understand even a small portion of what was said, can you imagine the shame? Not only were the words completely inappropriate, but they were spoken about the elder as if he were a task to be performed and not a person. He might have been one of the wheels on his chair for how person-centered the conversation sounded.
Words matter. We need to examine our language and listen to what is being said. Are the words and phrases ones that we would like to be used about us if the tables were turned?
If you have followed my journey, you know that I fought and lost a battle to remove bibs from our dining rooms. At the very least, let's call them "clothing protectors" and not bibs. Let's offer cloth napkins to those who want them. Let's treat our elders with respect.
When I approach someone who needs to be covered when they are eating, I will say, "Can I put this on to protect your clothes?" This gives them choice and protects their dignity as well as their clothes.
We refer to incontinence products as "briefs." Babies wear diapers. Adults wear pads, pull-ups or briefs.
Rather than referring to what occurs in the dining room with people who need help as "feeding," which is what I do to my dog before I leave for work each day, we call it "assistance with the meal." I put Teddy's dish down and leave the room. That's feeding. In the dining room, I interact with residents and staff. Even if they aren't able to talk, I tell them what kind of food they are eating. "Here's a spoonful of chicken, George." I watch for cues--a look or sound of pleasure, a grimace, or lack of enthusiasm for what is being offered. If they don't like it, we try something else. I smile and we interact. It's a happy, community time. Food gets consumed, but it's only part of the process.
Another word we need to drop from our vocabulary is "refused." "She refused her medication." "He refused his dinner." The word refused makes the elder sound like a cranky person with an attitude. The truth may be they weren't hungry, or didn't feel the need for their pain medication at that time, or didn't understand and no one explained. How much better to say they "chose not to."
Those of us who work in eldercare are familiar with the expression "behaviours." It always refers to something negative, such as aggression, calling out or wandering. Dr. Bill Thomas, the founder of the Eden Alternative, talks about these "behaviours" as being related to an unmet need. We are learning to ask the question, "What is the unmet need?" This moves the responsibility from the elder to us. It also moves the solution from an immediate medical answer "what medication does he need to control the behaviour?" to a social one "what is the unmet need and how can we meet it?"
Why do words matter? Because our words show who we are and what we believe. If we are passionate about caring for our elders in a way that respects their person-hood, let's ensure our words do the same.
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Care Partner Wednesday--Words Matter
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