Wednesday, 23 May 2018
There's a rhythm to the day in my neighbourhood.
Today, I was in at 6:30 to make a special breakfast. Even though my body isn't a big fan of getting up at 4:00 a.m., there's something magical about the hush of the dining room when the only sound is one care partner making breakfast. I love watching sleepy residents arrive one by one, greeting them and bringing them their first cup of coffee. The early birds, the morning rush, the stragglers.
Activites of various kinds, then the much busier and noisier lunch occurs. No stragglers this time, as everyone is eating, care partners are bustling to serve them and many conversations thread through the room. There's a joyful commotion, followed by a not-as-joyful scramble to clean up.
Somewhere around 1:30, there's often a hush. Many residents are back in their rooms for a nap, care partners are either giving care or taking a break and a peace settles over the neighbourhood.
Until all hell breaks loose.
Sometimes around shift change at 3:00, sundowning happens. Anxious residents pace, ask the same questions again and again, hover and get angry. They imagine events that aren't happening, want to go home to their parents and want to call the police. They wring their hands, walk without their walkers and ask again who is going to shower them tonight. Few afternoons go by when I don't see some evidence of sundowning, and often, when it affects several people, it can be overwhelming.
Sundowning is a phenomenon that occurs in people with various forms of dementia, where their behaviour changes mid-afternoon. Sometimes, it can feel like they are two different people. It doesn't happen to everyone or every day, and doctors can't scientifically explain why it happens. Agitation, anger, fear, paranoid behaviour, suspicion, delusions, disorientation, restlessness--all these can be a part of sundowning. If you've never seen it before, it can be frightening. Even if you have.
What can you do about it?
Sometimes, nothing. But here are a few strategies and suggestions.
1. Look for solvable problems. Is there anything causing this that can be fixed? Is the person in pain?
Are they tired? Are they hungry or thirsty? Are they bored or too stimulated? All of these are solvable problems that can lessen sundowning.
2. Create a calm environment. Try to keep excessive, startling noises to a minimum. Play soothing music at this time. Plan to take a walk together or spend time in the garden, or any activity that is both enjoyable and calming.
3. If sundowning is a regular occurrence, plan your day around it. Visiting or outings should probably be in the morning and quieter activities later in the day.
4. Don't try to reason or argue when you hear outrageous statements. As much as you can, agree and try to distract. It may not work, but sometimes it will.
5. Don't take anything personally. If your elder is agitated and angry, you might get attacked both verbally and physically. Remember, it's the disease talking.
6. Maintain your sense of humour. Today I was told that all my brains were in my bum, and that was why it was so big. My biggest triumph was that I maintained a straight face when everything in me wanted to laugh!
7. Make sure your doctor is aware of what you are dealing with. Keep a diary and document each incident. Although medications aren't a first or even second stop, there may be times when they can help with a severe form of sundowning. Either way, your doctor needs to know.
8. Get help. Sometimes a different face will elicit a different response. If there are other friends or family members who have offered to give you some respite, take them up on it. If not, perhaps you need to pay someone one afternoon/evening a week to give yourself a break.
Sundowning is challenging, and sometimes no matter what you do or say, things get out of control. That's okay. There is no formula for dealing with this, and as with many things dementia, what works today might not work tomorrow. Fix what you can and ride the waves of the rest. Tomorrow is another day.
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Care Partner Wednesday--Sundowning
Wednesday, 16 May 2018
"There once was a little girl,
Who had a little curl,
Right in the middle of her forehead.
And when she was good,
She was very good indeed,
But when she was bad, she was horrid."
Henry Wadsworth Longfellow 1.
I've known that poem all my life but wasn't aware it was written by Longfellow. You can bet he wasn't writing about random, curly-haired cherubs, but had a certain miss in mind.
So do I. She's not a little girl, but an elder and her hair isn't curly. But Ethel shares personality traits with this little girl. One day she is smiling, reasonable and charming, and the next, for no discernable reason, she's angry, yelling and hitting.
It makes celebrations a challenge.
For Ethel's birthday, her family came to join her for lunch. There were helium balloons, a cake, and singing--and the sourest face you can imagine. The family laughed at the pictures as they were all grinning and the birthday girl looked like she could eat them all alive. However, on Mother's Day, Ethel was charming, funny and full of smiles. The day after was the worst I have ever experienced with her. You never know what a day will bring with Ethel.
How do you handle that as a care partner? Temper tantrums are embarrassing at any age. Here are some simple suggestions.
1. Control what you can
You know if your loved one is tired, or taken out of their safe environment, or put in a stressful situation (such as meeting a group of people they don't know) it's likely it won't turn out well. Know what causes stress and what gives pleasure. This is extremely individual. Grandchildren might melt one elder's heart and set the teeth of another one on edge.
2. Keep it small and simple
As a general rule, a small group of people and a simple celebration is more likely to succeed.
3. Check your expectations at the door
Expectations are a killer when it comes to celebrations. From the purest of hearts, we want out loved one to feel special and loved and have a good time. The problem comes when that doesn't happen. If, after all the work that went into planning, they are miserable and angry, unmet expectations can quickly become anger and resentment on our part. We know they couldn't help it. We know it's the disease. But still...
4. Maintain your sense of humour.
Like Ethel's family on her birthday, laugh. In the end, you were all together, you made a memory, and life goes on.
5. Celebrate everything
Sometimes care partners can be so serious. It's a huge responsibility, after all. So much to think about. So many decisions. But at the end of the day, the time with your loved one is finite. There will be a day when celebrations won't be possible. So go beyond the obvious, and celebrate every day. Pull out the ice cream because it's Wednesday. Celebrate a sunny day, flowers in the garden, being together. Look for the joy in today and share it with your elder.
Care Partner Wednesday--Let's Celebrate!
Wednesday, 9 May 2018
The middle-aged man walks onto the stage and pulls out a chair. The audience watches in silence as he drags the chair to the back of the stage, positions it in the corner and sits on it. His back facing the audience, he begins.
"My name is Brian. I have Alzheimer's, but it doesn't have me."
He describes how his life has changed since his diagnosis. Friends melted away, his wife left him, and he's no longer able to keep his dog. He falls several times a week, gets lost and needs cue cards in order to give his talk. The worst difference, however, is how people treat him. Well-meaning, even loving people, talk about him as if he isn't in the room. They are awkward and don't know how to interact with him. They talk down to him. He says it makes him feel like a naughty child relegated to the corner.
He has lost his status as an adult.
I heard Brian speak this last week when I attended the 9th Eden International Conference. I was riveted as he described, not so much what the disease was doing to him, but how people's reactions were affecting him and making him feel.
We can do better.
We spend so much effort talking about the terrible disease which is Alzheimer's and focusing on the losses experienced by the person with the diagnosis, we risk losing the person inside.
We risk losing the person inside.
What did Brian mean when he said Alzheimer's didn't have him?
He meant that although the disease produced changes in his life, it didn't change who he is at the core of his being. He is still a valuable person with purpose. He can contribute to the lives of others. Who he is, what he likes, his opinions still matter. He can make choices and decisions based on his preferences. He can grow and develop and have meaningful relationships with others. He has as much to offer as the day before his disease was diagnosed.
As care partners, there is a danger of taking over. When our loved one comes to a place where they need help, it's tempting to make decisions that aren't ours to make, to perform tasks we aren't needed for and to steamroll over the identity of our elder.
Until you see a grown man sitting quietly in the corner...
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Care Partner Wednesday--Having Alzheimer's
Wednesday, 25 April 2018
It was time to say good-bye.
The activation students had been with us two days a week for several months and on their last day, we took them out to lunch. These two young men had grown, matured and learned so much over the weeks. As we chatted together, my supervisor asked them, "What was the best experience you had in all the time you were with us?"
As I thought about it, I wondered what they would say. Each had planned and run a special event, and they'd been spectacular. They'd gone on a trip, done one-on-one visits, taken residents for walks--so many opportunities to connect. What would they say?
"Breakfast with Betty."
Betty spends her entire day in a wheelchair. She's younger than most of our elders, as early-onset Alzheimer's changed her life in her prime. She's only in her seventies now, and she's lived with us for quite some time. Her naturally curly hair is still blonde, and her gorgeous blue eyes follow your every move. Most times her look is pensive, but when she occasionally smiles, it's a beautiful gift. Betty can no longer talk and hasn't been able to for several years.
But she can communicate. As our student sat with her each morning he was there and spooned porridge, toast, and eggs into her mouth, she communicated volumes and poured into his life. She told him how the value of a life doesn't depend on ability or what a person can contribute. She taught him that communication is more than words. And she taught him that love can grow in unusual places.
This self-assured, mature young man learned to look forward to their times together each morning. Their placement included two, two-week blocks where they came in every day, and after one of these, he had to be away the next week. When he returned, he rushed into the dining room, looking for Betty and saying, "Do you think she missed me?"
Our elders, even the most impaired among them, can give us gifts that will change our lives. As care partners, we need to watch for them and embrace them.
A hug, a smile or...
breakfast with Betty.
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Care Partner Wednesday--Breakfast With Betty
Wednesday, 18 April 2018
If you talk to anyone living in Southern Ontario this week, there is only one topic.
Friday 's grey skies turned to snow Friday night, ice pellets on Saturday, freezing rain on Sunday and torrential rain on Monday. Everything was coated in ice, including my car, driveway and the roads. I remained glued to the window all weekend, but sometime Sunday I realized that this yuck wasn't ending, and I was going to have to travel in it on Monday.
My wonderful son-in-law braved the driving rain to chisel ice from my car. I two-stepped to the car and crept to the station without incident. But the train station parking lot wasn't plowed or salted, and the snow, ice, and slush were deep. The rain was merciless, and I took one perilous step after another heading from my car to the train. "Is there rationing on salt?" I muttered to myself.
The train, subway, and even the bus journeys were fine, as they were all inside. But when I stepped off the bus, the most difficult few steps ensued as I crossed the street and navigated the sloping, ice-filled driveway. Through driving rain, I took one slippery step after another. When I finally stepped in the door, my chest was heaving. I was overwhelmed.
What does overwhelmed look like for the care partner?
It's the daughter dealing with her mother's anxiety disorder who receives twenty calls a day. Fifteen of them are overnight. Nothing she does or says calms her mother down. She hears the same questions and the same worries over and over again. Sometimes, she decides she needs boundaries and tells her mother she will be shutting off the phone after a certain hour, but then she lies in bed worrying.
Overwhelmed is the wife who must make difficult decisions about her husband's care, and just when they are made, his health changes and she must make more difficult decisions.
Overwhelmed is the sibling who visits but has no clue how to relate to her sister. She doesn't know this person and can't recognize the sister she knew. When she tries to do something nice for her, something she used to love, she is met with anger. At a loss, she sits in her car and cries after every visit.
What do you do about overwhelmed?
Sometimes there's nothing you can do but push through.
If you are in the middle of a disaster, or a series of seemingly unending emergencies, it's possible to become overwhelmed quickly. Like facing into driving rain and ice, it keeps coming at you, it must be dealt with. And it hurts.
Sometimes it's not the crisis but the ongoing demands of every day. Lack of sleep, physically demanding and unrelenting care can create a kind of dull despair. One small "extra" like taxes to be completed or the need to buy Christmas presents can create waves of anguish. It's too much. It's all too much.
How do you cope with overwhelming situations?
Probably not well, but here are some tips.
1) Call a friend. Call all your friends. Put the word out that you need help. Someone to listen, someone to help, someone to support. Overwhelmed can be overcome, but not alone. Never alone. The only way to begin to see the light is to have the love and support of friends.
2) Get rid of the unnecessary. Examine your life and see if there are commitments or duties that don't need to be on your plate. Can another family member look after them? Is there something that can be dropped completely? Any time that you free up, use it to rest.
3) Try to get away, even for half a day. It's amazing how perspective changes when we are rested.
4) Remember, it won't be like this forever. The crisis will pass and the situation will become stable. You will get used to the new normal. Things will get better. It looks like a long tunnel now, but there is an end.
If you are a friend of a care partner, watch them closely. Listen. Be there. Look for overwhelmed. Your friendship and support is an invaluable gift as they walk this journey.
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Care Partner Wednesday--Overwhelmed.
Wednesday, 4 April 2018
Sometimes, it looks like a knitted square.
My knitting group is small at the moment. Just three ladies contribute, but for each of them, it's an important part of who they are.
For Janice, it curbs anxiety. As each day wanes, she struggles with anxious demons who torture her with thoughts of the night. The simple routines of getting ready for bed cause her untold anxiety. Who will help her tonight? Do they know what to do? What if they don't come? She also worries about her body. She has an itch, a sore toe, a dry mouth. Left to her own devices, her worry would spiral out of control. Although every week she needs to be persuaded to start, the knitting and visiting with her friend gives her an hour of relief from the demons.
For Laura, it's a kindness. She comes for the express purpose of spending time with Janice. Her calm, gentle demeanour and friendly questions turn Janice away from fear, and help her consider other topics such as her adored grandsons. The ladies knit and talk, and the squares pile up.
For Margaret, it's different. She doesn't join the group, but knits a square a day in her apartment. Mostly blind, she knits by feel. She used to produce sweaters and baby clothes in complicated patterns, but she can't see to read a pattern any more. However, she can knit squares. About once a week, she sends me a neat pile of squares and pleads for more wool. Sometimes she phones me to thank me for letting her knit squares!
After weeks of this, I have a bag overflowing. Now it is my turn. I need to sew in all the ends and crotchet them together to make a beautiful afghan. In the fall, when we have our sale, the afghan will be sold to the highest bidder. This revenue can be used for equipment and special projects which are outside the budget.
Purpose. It's feeling needed, feeling I have something to contribute, and that I still matter in this world.
As care partners, we focus on care. Are our elders clean and sweet smelling and looking good? Are they mentally stimulated and given opportunities to exercise? Are there social events available to them? Are they treated with respect? Are their medications the correct ones at the dosage that will help them the most?
Is it any wonder with all these aspects of life and care to worry about, purpose gets lost?
Care partner, purpose is as important to your elder as their medication or clean clothes. If they don't have something or someone in their life which makes them feel they are contributing, it can be a slippery slide to depression.
How do we find purpose? Obviously, it's individualized, but how about asking their help with something? "Grandpa, what kind of flooring do you think looks better? Grandma, what did you put in your famous apple pie?" Or ask their opinion about the things that really matter. "Dad, I worry about Jimmy learning to drive. How did you handle that? Mom, I've been weighing the pros and cons of this job offer. What do you think?"
Identity is a key. If you know them well, you are aware what makes their eyes sparkle.
I read today that Terry likes to fix things. I remember a few weeks ago how he looked on with interest as I tried to figure out how to remove a mop head. I need to think creatively about how I can offer him fixing projects.
Mona is almost non-verbal, but she comes alive around china tea cups. Today she and I set up a display of china in our new lounge. We read the bottom of the cups and exclaimed over how pretty they were. "My mother used to have one like this," she said, uttering the first full sentence I had heard in months.
Purpose gives an elder a reason to get up in the morning, a feeling of contributing, and celebrates their intrinsic value. It can be found anywhere.
In a mop head,
a china tea cup,
or a ball of wool.
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Care Partner Wednesday--What Does Purpose Look Like?
Wednesday, 28 March 2018
When an elder reaches a certain age, and especially when they need care and move into a retirement home or long-term-care, a difficult conversation needs to happen.
How do you want your story to end?
For some people, this is an unemotional writing of a living will, which expresses their wishes. Done, filed, don't have to think about it until the time it's needed. For most of us, however, this conversation is wrenching on so many levels. It needs to be a family dialogue, and what family enjoys a friendly fireside chat about the death of a loved one? The process of dying can be equally terrifying, and discussing the details is more than some can handle.
In our facility, we discuss levels of care.
Level one is when the resident is in their last days. Usually at this point, they have stopped eating and drinking, and the focus is on comfort care. Most times, medications are discontinued except those for pain. Nothing is treated.
Level two involves treatment for infections such as urinary tract infections or pneumonia, but those are done in-house. There is no transfer to hospital for more invasive treatment. The only exception would be a broken limb, which would be treated and then the elder would be sent home.
Level three is as above, but includes transfer to hospital for further treatment, but no CPR.
Level four includes everything, including CPR.
I have this conversation with every family when their loved one is admitted. Most need to take the paper away and think about it, talk together with the elder or reflect on wishes expressed in the past. It's not easy. I always tell them nothing is set in stone, and the levels are to give us guidance. If the day comes when they receive a call that their mother isn't doing well, they can change their minds.
"Well, you know, he's 92. He's had a good run."
Many times, as families consider how they want their loved one's final days to look, age will be mentioned, as if life was some kind of sand in an hour glass. It does run out at some point, but a person's age should be a tiny part of considering their last days. Well-being, physical state, cognitive status, their wishes...all these are more important than their age.
One of my beloved residents was a few months short of 101. Her sweet disposition and dry sense of humour made her a favourite among all. One day, I heard her coughing, and a few days later, she was a different person. She couldn't stay awake and could barely hold her head up, she could no longer walk and needed assistance with her meals. Everything inside me screamed, "No!" My heart broke to watch her drooping head and exhausted cough.
Are you nuts? She's 100. Time to go.
But just a few days before, she was joking, chatting with her table mates and encouraging her friend to attend an activity. What did her age matter? She had quality of life.
The cough was treated, and someone sat beside her and helped with her meals. In tiny increments, we saw improvement. It was about this time her doctor came by and said to me, "Look at her. She's just fading away." I calmly pointed out to him that her head was no longer drooping and she was more alert. Inside, I was standing on my soapbox and shouting, "She's not fading away on my watch!"
Another month passed, and minuscule improvements became big changes. She walked to the dining room with her walker instead of using her wheelchair. She ate well, and was able to feed herself at least part of her meal. She was alert, and her low voice enhanced the mealtime conversations. She was back.
On Monday, she turned 101. Instead of a present of flowers or a scarf, she and I made bread together, as she had almost weekly in her apartment before she lost her sight. While it rose, she went to get her hair done, and we took it out of the oven as she and her son enjoyed lunch. As the team crowded round, we took a picture of her with the bread knife posed over the loaf. Her face glowed.
I'm fully aware that the sands in her hourglass are almost gone. This is a reprieve, not a cure. But seeing the joy in her face, I know quality of life has nothing to do with age.
p.s. I saw that doctor in the hall and pulled out my phone to show him her glowing face with the bread. I wasn't smug. No, not me.
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Care Partner Wednesday--Age Is Just A Number