Thursday, 31 May 2018

Care Partner Wednesday--End-of-Life

Care Partner Wednesday--End-of-Life
Every care partner knows the end will come someday. Maybe they dread it. Maybe they welcome it. Maybe it depends on the day.

Whatever your feelings, it's likely that you have questions. Like the entire care partner journey, end-of-life is full of difficult decisions. There is no manual that helps you make the right one, and what is right for your loved one might not be right in all cases.

For the next several weeks, we are going to be looking at various aspects of this final stage of the journey, and try to address some of the issues. If you have any questions you want to be addressed, put them in the comments below and I will do my best.

Let's look at end-of-life, palliative care and what they mean.

These terms are confusing because many assume they mean the same thing, and use them interchangeably. Palliative care is given to people with serious illnesses from which they aren't going to recover. It focuses on their symptoms and providing comfort. The goal of palliative care is to help people in this state to have a good quality of life and feel better.

Everyone in my neighbourhood and on our floor is palliative. They have late-stage Parkinson's disease, heart disease, dementia and many other serious illnesses from which they won't recover. However, they enjoy excellent dining, love to listen to music, plant gardens and play games. They cheer their favorite teams on TV and discuss the royal family endlessly. They tell stories of their lives and care about each other. They live their lives, in spite of the ticking clocks inside of them.

Every effort is made to make their lives comfortable. They are helped to keep clean and fresh and get regular podiatry, dental work, and other services. They get their hair permed and styled and buy new clothes. They are comfortable, but more than that, inspired and have a purpose.

End-of-life is the time when a person who is palliative is coming close to the end. There are many signs. During this time, the person and their families need physical, emotional, spiritual and social support. There are decisions to make, and you may need help to make them.

What does end-of-life look like? We all hope to die in our sleep, but that isn't often the case. Like in life, death is different for everyone. But here are some common factors.


  • The person's appetite fails slowly. Perhaps they only take a few sips or spoonfuls. They may lose the ability to swallow.
  • Energy fails, and they sleep more and more until they are seldom awake.
  • If they are still able to talk, they chose not to most of the time.
  • Their bowels and bladder are less active.
  • They may indicate that they are in pain through groans or facial expression.
  • Their breathing can become raspy and rattly.
As death draws close:
  • they get bluish, mottled skin on their toe and nail beds, and sometimes knees.
  • Their body temperature drops.
  • The rattled breathing becomes more pronounced, and they may slip into a coma.
Although it can be frightening, it is also a great privilege to be with a loved one when they are dying. Hearing is the last sense to go, and you have an opportunity to tell them you love them, and how much their life has impacted yours. Take this opportunity to say everything you need to say.

 It may bless them in their final hours, and it will certainly bless you.

Next week: When Food is No Longer Possible

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Wednesday, 23 May 2018

Care Partner Wednesday--Sundowning


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

Care Partner Wednesday--Let's Celebrate!




"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.

1. https://www.poetryfoundation.org/poems/44650/there-was-a-little-girl

Care Partner Wednesday--Let's Celebrate!

Wednesday, 9 May 2018

Care Partner Wednesday--Having Alzheimer's



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