Wednesday, 21 May 2014

Carepartner Wednesday--Giving and Receiving

I received so many gifts today.

Outside our lounge at work is a lovely patio, but like any garden, it needs work. Two tables full of inside plants needed to go outside, weeds and other winter debris had to be moved from the planters and the soil made ready for the colourful annuals I can't wait to get my hands on. (It's been a long winter!) However, it's also nearing the end of the month (with all that entails.) I had a meeting to prepare for and several other pressing tasks.

I didn't have time to garden.

Enter Warren.* He started by cleaning out all the beds, then pulled the weeds and swept.  I carried out the plants, and in an hour, the patio looked clean and lovely. Warren gave me a gift.

Kathryn* made a comment that was designed to make me throw back my head and laugh. It worked.

Julia* saw me and her eyes lit up, and then her whole face glowed with a beautiful smile.

Robert* and I chatted over lunch, and he flashed me his boyish grin.

So many gifts--every one of them from a person with dementia.

I see them give gifts to each other, too. The other day, one of the ladies at the next table in the dining room called the nurse, but not for herself. Her table mate fell the day before, and was in pain. After the remedy had been given, she gently touched her friend's hand. "You should feel better in about 20 minutes."

The concept that people with dementia have something to give is foreign to some. Certainly the medical model says, "You have a disease. We will treat it and keep you clean and safe. We will care for you."

It takes a new set of eyes to see the gifts.

Dr. G. Allen Power says, in Dementia Beyond Drugs, "It is also important to provide opportunities for elders to be care givers as well as care recipients. Most of our elders have lived through wars and economic booms and busts. They have raised children, pursued careers, and acted as mentors and advisers over the years. We have seen how the institutional nursing home fosters dependency and causes people to feel helpless and of little use in the world. As with decision making, people with dementia can almost always give care on some level, whether by reading to a child, watering a plant or stroking a cat" 1 (italics mine)

If you believe the essence of the person exists in spite of disease and physical challenges, you begin to look for the gifts.

They may not be the same person as before in some (or many) ways, but certain passions, or simple pleasures, remain.

I challenge you to focus on what gifts you are receiving each day.

Then, say, "Thank you."

* all the names have been changed
1. Power, G. Allen, Dementia Beyond Drugs, p. 93

Thursday, 15 May 2014

Carepartner Wednesday--The Importance of Words

Have you ever been searching for a word and it eludes you?
You know it. It hovers at the fringes of your consciousness, but you can't bring it forward. You substitute a lesser word, and feel frustrated because it doesn't say what you want.

That night, at 2:00 a.m., you wake to go to the bathroom, and suddenly the word pops into your head. You feel the satisfaction of finally having captured it, and the frustration of having no one to share it with.

Have you ever been one letter away from building a fantastic Scrabble word? If only I had an "r", I could build a 57 point word. Then a miracle happens, and your partner puts down the letter you are looking for, in just the right space. Your fingers trembling with excitement, you put down your tiles--only to discover you had the spelling wrong.

Have you ever seen someone with dementia struggle for the right words? You think you know what they mean, and you want to supply the word, but if you haven't got it right, saying a word is going to make the situation worse. You see their anxiety increasing, and you wonder, "Should I speak the word or keep silent?"

Words are important.

I am discovering that subtle attitudes can be conveyed in words.

If my bottom line is that dementia is a progressive disease, a tragedy, and as a caregiver, I must ensure the people with this disease are safe and medically stable above all, I will use certain words to
convey this. I will talk of losses, and see behaviours as problems to be managed. I will look at interventions, usually medical, and often psychotropic drugs. I will be kind and caring, and I will make all the decisions.

I know this, because at some point in my career, I have done a lot of these things.

I am learning new words.

Dementia is a "shift in perception of the world."1 The person with dementia has their own reality, and rather than demanding they enter my reality ("You husband isn't here. He died 5 years ago.") I enter theirs ("I don't know your husband. Tell me what he is like. What do you like best about him?") I need to be open and flexible, because at times, they are right in the middle of my reality, and we are talking about politicians and teachers, and suddenly the conversation veers to the left. I am the one who needs to listen and look for ways to participate, not draw them back to "reality."

The word caregiver has begun to bother me, because it implied a care receiver. Am I always giving, and is the person with dementia always receiving? You only have to spend an afternoon with this population to know this isn't true. Many days, I receive far more than I give. So lets call us both care partners. (Did you notice the difference in the title?) We are working together to make care what it should be. Both of us is essential to the relationship, and both of us has something to give, and receive.

Then there is behaviour management. This is a big one when working with dementia. There is a whole list of behaviours (anxiety, anger, wandering, etc.) and other lists of ways to control them. What if I looked at the reason behind the behaviour. Maybe it an attempt to cope, and if I look at the source of the problem rather than the person, the "behaviour" would disappear. Is the person who is stripping in public--too warmly dressed? The woman who is weeping in her room, could it be that someone who was supposed to be helping her was brusque and demanding? Could the gentleman in the hall be wandering because he's looking for the bathroom? Instead of thinking in terms of "behaviours," we need to "conform the environment to the needs of the person." 1

Our words convey our hearts. A person with dementia is not a problem to be managed. A person with dementia is a person. A person who can still grow, be fulfilled, experience life.

My cognitive skills do not determine my value.

In Dementia Beyond Drugs, G. Allen Power uses the example of a resident who did not want to take their medication one night. Let's just say she had an upset stomach, and the thought of putting pills in her mouth made her feel ill. However, she didn't have the words to explain that, so she pursed her lips and shook her head. The nurse writes, "Mrs. P. refused her medication." If I came along and read that, not knowing Mrs. P., I would see a stubborn, perhaps angry, uncooperative person. 2

Words matter.

Here are the insightful words of someone with dementia.

     "I suspect that not taking my drugs is my way of saying "NO" to the disease. It's my way of remaining in control of me...
     The longer I live with Alzheimer's disease, the less important the pills become to me. The farther along I am in the disease, the more important the pills become to my caregivers. I want them to understand that I don't want to swallow a bitter pill twice a day--nor do I want to be the bitter pill that my caregivers must swallow each day." 3

Now that's an incredible use of words!

1. Power, G. Allen, Dementia Beyond Drugs, p. 78.
2. Power, G. Allen, Dementia Beyond Drugs, p. 84.
3. Taylor, Richard, (2007) quoted in Dementia Beyond Drugs, Power, G. Allen, p. 84.

Wednesday, 7 May 2014

Caregiver Wednesdays--The institution of home

"I'd never put my mother in a home."

I've heard these words many times, usually said in a sanctimonious, slightly patronising tone. The implication is, "I'm better than that. I value my mother (father, other family member) more than those who make this choice."

In many cultures, home is the only choice. Elders are revered, and caring for them at home is what you do. The elderly person is an integral part of the family, and has a role and position. Their wisdom is revered and their opinion valued. It works.

There are many times it doesn't.

Here are five reasons why:

1) The caregiver is a spouse or sibling who is frail themselves. Caregiving is a demanding task that often involves long hours (including the hours we usually associate with sleep) and physical strength. Caregivers, full of love and willing to sacrifice, simply cannot keep up with the demands of the job.

2) The caregiver is an adult child who has children of their own and a job. They are willing, but must make an income, and are overwhelmed by the demands of work, probably a commute, children and now an elderly parent. The parent is either home alone during the day, or they must hire expensive private care. The elderly parent never sees their friends and is isolated. The caregiver is stretched beyond what is reasonable.

3) If the elderly person has dementia, their behaviours can be frightening and confusing to those who have no idea how to deal with them. Add to this the emotional sinkhole of seeing your parent deteriorate, and not knowing how to relate to them. Then there is the wandering at night. Often, the only answer that seems reasonable is psychotropic or sedating drugs.

4) Isolation is a huge issue. The elderly person may no longer be able to get out independently. Neither can many of their friends. Their word shrinks, and they are lonely and bored. They are in the bosom of their family, but have no one their own age to whom they can relate.

This is a significant problem. In his book Dementia Beyond Drugs, G. Allen Power talks about "social capital." "The new currency won't be intellectual capital. It will be social capital--the collective value of whom we know and what we'll do for each other. When social connections are strong and numerous, there is more trust, reciprocity, information flow, collective action, happiness and, by the way, greater wealth." (Kouzes, 2000)1 Social ties are the key to well-being, and Power sites studies where the lack of these lead to "poor health, depression and more functional limitations...poor quality of life and a 60% increase in the risk of developing dementia." 2 Isolation in the elderly, and particularly those with dementia, can be found in institutions. It is often present in those who live at home.

5) Most caregivers are kind, caring family members who want only the best for their loved one, and sacrifice to look after them.  One of the difficulties of being a family caregiver is the relationship changes. I was your wife, your son, your sister, and I retain that relationship, but I am also your caregiver. Over time, one role can overtake the other. Caregivers can make assumptions about the abilities of their loved one. Perhaps they set the table incorrectly, so the caregiver takes over that job. They are slow in dressing themselves, so the caregiver does it. They need time to make even the smallest decision, so the caregiver makes it for them. This "kindness" strips the elderly person of any abilities (some they still have, just at their own pace and in their own way) and leaves them feeling powerless and useless. They may shut down, or they may lash out. Often, the solution of choice is medication.

What is the answer?

How can we care for our elders in a way that fights loneliness, hopelessness and boredom?

Stay tuned...

1. Power, G. Allen, Dementia Beyond Drugs, p. 71.
2. Power, G. Allen, Dementia Beyond Drugs, p. 72.

Sunday, 4 May 2014

The small miracle of Hannah

Today you are seven, and as Grandmas do, my mind drifts back to the beginning, ahead to the future and places in between.

The day we first heard that you were on the way, your Grandpa and I were feeling so many things. I remember him looking at me with a startled look, and saying, " I'm going to be a Grandpa!" He was happy about this, but it was kind of shocking. Our grandparents, and even our parents as grandparents, were old. We needed a bit of time to get used to the idea.

I got excited quickly. I bought a soft, white teddy bear, and I began painting and decorating one of the bedrooms for you. I had Uncle Ben bring down the cradle that your Mommy slept in and made new bedding for it. I repainted the toy box your great-grandpa made and painted for me, and restored the scenes he put on it. I bought the tiniest little pair of socks and hung them on the Christmas tree. "Grandma" still took some getting used to, but I couldn't wait to hold you.

I was at work when I heard you were on the way. Everything in me yearned to get to the hospital, but I had to finish my day. When I got home, I couldn't believe that Grandpa and Uncle Ben wanted dinner. Dinner at a time like this? I fed them and begged to be taken to the hospital. "Just drop me off, " I said. I guess I wasn't the only excited one, because they both stayed through the whole event. Grandpa wasn't well, but he had to be there. All of us were trying on our new roles, and finding they fit well.

I was so excited when Mommy asked me to stay when you were born. I was there when my children were born, but I was kind of busy, and didn't enjoy the event. When you entered the world, it was like the sun burst through the clouds, even though it was night. Joy. Pure joy.

Since then, we have had so many fun times. Grandpa only had a few months with you, but he was so proud to hold you and tell friends about you. When he had to leave, there were many days when holding you held me together.

I love the person you are. Your enthusiasm for life, your loving nature and the incredibly funny things you say. Oh Hannah, you are the funniest person I know. Also the funnest.

When I look ahead, sometimes I feel afraid. There are so many dragons out there, just waiting to devour you. There are so many ways in which you could get hurt. It's so easy to make mistakes and wrong decisions (I know, because I've done it myself so many times.)

So this is what I do. I pray. I pray for your Mommy and Daddy as they bring you up, because I know what a difficult job that is. I pray for you, and ask God to help you make the right decisions every day, and be the person He wants you to be. I pray you will know Him, and ask him to rule your heart and guide your life. I pray He will be your best friend.

And I pray for me, as well. Being a grandma is an awesome responsibility, and I want to do it right. I won't always be here, but the influence I have in your life, will. I pray I make a difference in you.

Happy birthday, my darling girl. Hugs.