Wednesday, 31 January 2018

Care Partner Wednesday--"How Are You Doing?"

"Nobody's asked me how I'm doing."

The poignant words lingered in my mind long after the evening ended. I spoke to a group at church about self-care in ministry, but because I used examples from my life and work, the topic of elders in long-term care naturally rose to the surface. A lovely lady, an elder herself, told how she and her husband used to visit her sister-in-law every week in her care home. For years this was their life each week, and they came to know staff and other residents. This past Christmas, their loved one died at 94.

"People say, 'She lived a good life' or 'she had a long, full life and she was ready.' Is that supposed to make me feel better? I know those things, but she's still gone, and I miss her. Don't I get to grieve because she was old?"

There is no expiry date on grief.

I sat with a family member whose mother was dying. I held her mom's hand and talked with her. We shared stories of her mom, who was a character in every sense of the word. At one point, she teared up, and then chastised herself. Her mother had reached the incredible age of 105!

"It's silly to be upset."

No, it isn't. Your mother is still your mother, and you have all those years of history, funny stories and love. A relationship is coming to an end. There's a tearing away and jagged edges. Things will never be the same again. You need to grieve.

I confess: I've said those phrases. I never will again. Instead, I will focus on the one left behind.

"Tell me one of your favourite stories about your mother.. What were some of the things you did together when you were younger? Did she have wise sayings that impacted you?"

And most importantly--

"How are you doing?"

Care Partner Wednesday--"How Are You Doing?"

Wednesday, 24 January 2018

Care Partner Wednesday--Understanding Dementia pt. 2

Words aren't friends for George any more. He used to give lectures, make high-level phone calls, and joke with co-workers in his job as president of a company. Now words swirl in his head, and he can seldom catch the right one. His tongue stumbles and his brow furrows as he tries to tell me what he wants for breakfast.

Language is one of the effects that Alzheimer's and other dementias can have on the brain. People who have suffered from strokes often struggle with expressing themselves as well. We've all had moments when a word escapes us, and we've asked someone to "Pass the do-dad." This isn't that.

"Aphasia is a brain or neurological disorder that affects a person's ability to communicate."1 It can affect not only speech, but comprehension and the ability to read.

Expressive aphasia is what George experiences. The words are just out of reach, and he struggles to find the right one. He knows what he wants to say, and there are times when, miraculously, the words appear, but always after a struggle. And most times, they don't.

Apraxia is the inability to understand a verbal command and follow instructions. "Could you please turn on the light?" The person may or may not know what the light is, but not be able to comprehend how to turn it on, or even what that means.

Motor aphasia is seen most often after a stroke, and is the inability to make the mouth, tongue and lips move properly in order to form words. There are times when therapy can be helpful for people with motor aphasia.

Communication is essential. How do care partners find a way?

1. Relationship comes first. My first task with George was to get to know him, and help him to realize that I was a person who could be trusted. I also got to know his family because they could tell me things George couldn't. George also warmed up to me as he saw his wife and children interacting with me. If you are a family care partner, you already have the advantage of relationship.

2. Remember that communication is more than words. Gestures, facial expression, touch where appropriate, and tone of voice all play a part. Use your whole arsenal to communicate.

3. Relax. It's frustrating for both of you, but getting tense or angry won't help. People with expressive aphasia are more subject to depression and anger because they know what they want to say but can't find the words. You can help by keeping the tone light.

4. Maintain a sense of humour. Laughter can diffuse the tension, as long as it's not perceived to be directed at your loved one.

5. Be patient. One of the most difficult issues for a care partner is knowing when to help by supplying a word. There are times when this is appropriate, times when you will get the word wrong and make it worse, and times when the right thing to do is just wait. Practice helps, but you will never be right all the time. Do your best.

Social Masks

Have you ever wondered what it would be like if everything you thought appeared in a little bubble above your head for all to read?

Another issue many people with dementia struggle with is the removal of the filter that most of us have to keep our thoughts in our head and not coming out of our mouths. It can cause all kinds of embarrassment for a care partner.

I remember a resident who lived her life as a minister's wife. Her husband was large and domineering, and I imagine her thought life was colourful, but as a good minister's wife, she kept it all inside. She developed dementia, and after he passed away, her filter disappeared as well. Her favourite activity was to sit in a small alcove area and make comments about those who walked by. I   sometimes grinned, thinking that all the repressed thoughts over the years were finally finding expression. One day, a large family member walked by, and she exclaimed in a loud voice, "Well, that's a big man! Will you look at the belly on him?" The expression on the man's face was priceless.

This is another situation where a sense of humour is indispensable. It doesn't do any good to reprimand your loved one because with the lack of filter comes lack of comprehension. They have no idea they've said or done anything wrong and if you confront them, they will insist you are wrong. There may be times when a discreet conversation with the other person will help, but for the most part, try to see the humour and move on.

As a care partner, it can sometimes be tempting to consider all these changes and despair.

"He's not the man I married."

"She's not the wife I knew any more."

"I don't recognize my mother."

We are told over and over that dementia is a tragedy that steals the best part of our loved ones away. Don't fall for this lie. The disease will progress, and there will be changes, but they are just that--
changes. You aren't the same person in most ways as you were in your twenties, are you? If you are over fifty, you probably can't and don't want to do most of the things important to you then. You changed. People change. With dementia, some of the changes are accelerated and more challenging, but the person inside is still there. They haven't been stolen away, as one misleading poem circulating on Facebook says.

 Celebrate your loved one. Celebrate who they are today, and every day you have with them.


CLICK TO TWEETCare Partner Wednesday--Understanding Dementia--pt. 2

Thursday, 18 January 2018

Care Partner Wednesday--Understanding Dementia pt.1

Dementia. Memory loss. Alzheimer's disease. Confusion. Cognitive impairment. Neurocognitive disorder. What does it all mean? Are these all words used to describe one condition, or are they different? Does everyone with dementia (or whatever term you use) act the same? What can I expect?

When a person is diagnosed with dementia or any other term relating to cognitive impairment, it's frightening. What is known for sure is that life is going to change, but the terrifying question is how, and in what ways will those changes affect life and how it's lived.

Although there are some similarities in how dementia affects those diagnosed with it, everyone is different. There are a whole host of symptoms, and not everyone has every one. Bill Thomas, founder of The Eden Alternative, says, "If you've met one person with dementia, you've met one person with dementia." Dementia is an umbrella term for several specific diseases (including Alzheimer's) and there are many factors involved in how it looks in each person. Some of these are:

  • the specific diagnosis
  • how far along they are in their disease
  • the person's personality
  • the environment
  • the responses of those around them
  • evidence of a second disease or infection (and example of a disease could be heart disease, or diabetes, and an example of an infection could be a urinary tract infection. Most people have more than one thing going on, and this affects everything.)
Some of the challenges a person with dementia might have relate not only to their memory, but how it affects what they do in a day, and how they are able to do it. As the disease progresses, the person with dementia will need more help in multiple areas.

Doing more than one thing at once. This might be as simple as being in a room where more than one conversation is happening, or listening to music while eating, or trying to perform a task while someone is talking to them. A care partner might become frustrated when they keep stopping, but it helps to understand the difficulty their brain is having in keeping things organized when there is more than one input. Be aware, and try to  keep it simple. 

Making decisions, planning and organizing. This might seem obvious, and the temptation of many care partners is to take over this entirely. Early in the process, activities like paying bills and remembering appointments falls to the care partner, and it's tempting to fall into the habit of making all the decisions and plans. Don't do it! The person with dementia has opinions, can decide and has preferences. It takes time and patience, but it is important to their humanity that it occur every day. "Would you like to eat corn flakes or porridge with breakfast? Shall we read a book together or go for a walk? Do you like gardening or watching TV?" Ask, and give time for the answers. 

Remembering. This is the best known aspect of dementia, but it is far more complex than we realize. As care partners, if we can understand some of the memory issues, we can have greater empathy and help our loved ones through the process. Dr. Richard Taylor, a clinical psychologist and PhD who was diagnosed with dementia, probably of the Alzheimer's type, writes about his issues with memory.

"I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when and how the bad ones will come, except when I am very tired. Sometimes, I am aware I am floundering and cannot seem to hold myself together. it's strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something, and not have a clue what it was. Most dangerous for me are the moments I do not understand but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is, I don't know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and didn't find it for three weeks. Can I do this? Of course! When I really did not understand what is required of me, and just said "yes" for reasons that only Dr. Alzheimer's understands." 1.

As a care partner, it can be frustrating keeping up with and understanding the thoughts and actions of the person with dementia.

But imagine living with it.

Next week: How dementia affects perception, interactions with others and language.

Care Partner Wednesday--Understanding Dementia pt.1

Wednesday, 10 January 2018

Care Partner Wednesday--Dealing With Anxiety

"I should be able to do this." What this well-dressed, beautiful senior lady was referring to was moving herself and her husband from the home they had lived in for most of their married years.The initial decision to move was one she had to make alone. He was no longer able to participate. All the decisions about what to keep and what to give away, how to set up her apartment and his suite on the care floor, and  how to help him settle into his new home, fell to her. Family would help, of course, but she was feeling the heavy weight of responsibility.

And no wonder!

We often consider anxiety as it relates to our elders, but care partners face wave after wave of anxiety as they cope with the challenges each stage of caring brings.

Here are a few examples:

  1. Can I cope with caring for my loved one at home, or am I reaching the end of my abilities?
  2. How can I negotiate the hazy world of long-term care application? 
  3. What is the best place for my elder? How can I find a place where I will be able to sleep at night, knowing they are lovingly cared for?
  4. Will I be able to tell them they are moving in a way they can understand?
  5. How can I help them adjust to this new environment?
  6. My elder is changing, and it frighten me. Is this something major, or just a small infection?
  7. My elder fell, and I'm afraid it will happen again. He didn't break anything this time, but we might not be so lucky again. He keeps walking without his walker.
  8. I see a decline and it scares me. What does the future hold?
Every part of the care partner journey can be wrought with anxiety. "I should be able to do this." We are hard on ourselves.

Here are some suggestions if you are a care partner and are feeling overwhelmed with anxiety.

Find support. There are excellent groups (such as the Alzheimer Society, Parkinson's Support groups etc.) with help for you about the specific issues you are dealing with. Part of anxiety is lack of knowledge, and when you have a better idea of what you are dealing with, anxiety lessens. Find a place where you can ask your questions.

Be kind to yourself. No one is on top of every situation all the time. Losses (such as those that come with decline) require time for grieving. Painful decisions and difficult conversations need to be recovered from. Watch the words you say to yourself. Make sure they are kind.

Schedule small breaks. A weekend away. A night out. You will be a better care partner for it.

"I should be able to do this." You can and you will, but only if you treat yourself well.


Wednesday, 3 January 2018

Care Partner Wednesday--When a Wife Becomes A Care Partner

Back in the mid-1950s, they were both in high school and she experienced heart palpitations whenever he passed her in the hall. He was three years older, and she doubted he even noticed her. But he did. One day he caught up with her and walked her home. She sat in the old swing out the front of her house and they talked for an hour, while her mother peeked through the curtains.

They laughed for years about the significance of that hour. It was during that time she decided he was the cutest and smartest boy she had ever met, and he decided he was going to marry this little sweetheart some day. "Some day" was almost five years later, which still wasn't enough time according to her mother, but they couldn't wait any longer. Her mother sewed her dress and her big sister was maid of honour.

Although she was incredibly proud when he used the term, she admitted only to herself that she had no idea how to be a wife. She learned, however, and also how to be a mother, as two sons and a daughter joined their family. Her role as wife changed and grew over the years as she supported him through business failures, new jobs and all the ups and downs life brings. Before they blinked, those children were grown and they had grandchildren, and she added a new role to her repertoire.

When her youngest daughter was getting married and asked about being a wife, she surprised herself with the wisdom that flowed from her. Where had she learned so much about what it meant to be a wife? She decided it was in the school of life, and she'd had some amazing teachers.

When the changes came, they were subtle and almost unnoticeable. A forgotten appointment here, a repeated conversation there. Keys lost again and again. When they became more frequent, a tiny part of her brain began to inquire, but she firmly closed the door on that line of questioning. It wasn't until the day when he got lost driving home from work that she could no longer ignore the truth. She had a new role. She was a care partner.

Of all the roles in her life, this was the most mystifying. She was caring for this man she had loved for so many years, but she was still his wife. How could she count out his pills and make sure he took them without infantilizing him? How could she deal with incontinence and still maintain intimacy? Who could she tell about her greatest fears, when her greatest fears involved him?

A wife who becomes a care partner walks a fragile line. She cannot walk it alone.

If you are a friend, draw along side her. Listen, even if you have no words of advice. Allow her to laugh and cry and tell her stories, because you are giving her an invaluable gift. Encourage her to find a support group of people going through similar circumstances. If necessary, go with her to several meetings until she is connected.

There are ways in which the care partner role makes the wife role exceedingly difficult. With time, patience and persistence, she can learn both roles and even excel at them. She can find her way to a fulfilling new relationship with her husband.

Help her find her way. Be a friend.


Care Partner Wednesday--When A Wife Becomes A Care Partner