Wednesday, 28 November 2018

Care Partner Wednesday--The 12 Ways of Christmas (pt. 3)

Friday is "decorating day" at work. In the Community Life office, where all things creative happen, red bags of Christmas trees line the walls and boxes and bins of glittering decorations are everywhere. At 9:00, staff who usually spend their day in front of a computer screen will join those of us who work on the first floor, and Christmas will gush forth in one gigantic splash.

I dread it.

I love it.

I dread it because there's no doubt it's a lot of work. And what goes up must come down.

I love it because residents love it. It doesn't matter if you're 9 or 90, there's a magic in the air when the lights go on the tree and Christmas music starts. Maybe I'll even put a Hallmark movie on the TV.

For the care partner, decorating for Christmas can seem like an enormous mountain to climb. We've already talked about choosing what's important. Here are a few more suggestions as you prepare your home for Christmas.

5. Spread decorating over several days

I've noticed people often post their christmas progress on Facebook.
"The tree is up."
"Shopping is done."
"Everything's wrapped."

When did Christmas become a race to the finish line?

How about spreading decorating over a week or two. A wreath here, and advent calendar there, the tree today and the mantle tomorrow. People with dementia can quickly be overcome by sensory overload, and elders often tire easily. Imagine what it would be like to take the pressure off. Complete one part of the decorating and sit and admire what's done. Look at the lights. Appreciate the miniature village. Exclaim together over ornaments and the memories they inspire. The Christmas tree might take a few days to complete, and that's okay. Your elder's participation and enjoyment of the experience is what matters. Realize there's going to be some boxes and confusion for as long as it takes to get finished, but allow yourself the luxury of time. Take mental, or actual, pictures of the joy and wonder as the decorated house slowly takes shape.

6. Be flexible and keep it short

This applies to Christmas day and to all social gatherings during the season. There are pros and cons to every event, and you need to take your best guess at what will work for your loved one. Have a plan A, but ensure B, C, and D are in your back pocket. Here are some questions when assessing what will work best.

a) What is their best time of day?
b) Does a nap help, or does it make them groggy and out of sorts?
c) Do they enjoy having lots of families around, or do they prefer small groups?

It may be that visits need to be spread over several occasions. One family had each group come for lunch over the season. Their loved one's best time was around lunch, and he was able to enjoy time with each of his children and grandchildren in intimate
./groups. When Christmas day came, one child hosted it, and the parents arrived mid-morning. Dad had a nap in the afternoon while mom visited with everyone, but she also knew that if he needed to, they would leave. She was flexible, realizing that plan A might not pan out.

It's rare to find someone who doesn't put pressure on themselves at Christmas. Be the smart care partner with realistic expectations and flexible plans.


Wednesday, 21 November 2018

Care Partner Wednesday--The 12 Ways of Christmas--(pt. 2)

Family time over the holidays can be fun and exhilarating--the stuff of which memories are made.

Family time over the holidays can be a disaster, a bad dream, and the birthplace of hurt feelings and misunderstanding.

All this can happen in the best of families. In the same family. Over the same holiday season.

If you are the care partner of someone with dementia, you'll need to figure out how to handle celebrations and family times together. A lot of changes occur in a year, and what worked last year probably won't be the best plan this year.

Way # 3 Communicate

The holiday season brings people together who might not have been with your loved one for some time. The daughter who lives out of town may phone, email or text every day, and you don't feel that she's out of touch. She talks to her dad regularly. The fact is, she hasn't been in the same room with him for months, and her children have grown and may be surprised and unnerved by changes in their papa. And she's one of the closer ones. Cousin Erwin and his wife, or your brother from down south are even more removed.

My default is always to do nothing and "see how it goes." Chances are, it won't go well, so resist the temptation to do nothing. Think back to who your elder was a year ago, or the last time most of the group attending spent time with him. How has he changed? Has his speech become more difficult to understand? How about his mobility? Did he need incontinent products a year ago? Did he have trouble using utensils when he ate? Make a list, including any stressors that you might not see every day, but which might be a problem in a group. Does the noise of children playing bother him? Does he tire easily?

Here's another point of communication: Have you always hosted Christmas for your family? As much as you may love the preparation and the cooking, it may be too much to do when you are looking out for your loved one. Do you have the courage to tell them? Or maybe you've always travelled to cousin Jimmy's house, but you know a car ride, even if just a few hours, will cause exhaustion and stress. Perhaps your elder won't remember the house and will want to leave the moment you get there. Consider what might work best for them, and have a frank talk with your loved ones.

Way #4 Teaching

Trying to teach your family and friends might seem patronizing, but it's fact that many people are nervous and afraid around people with dementia. They don't know how to talk to them or how to respond to some of the unusual conversations that can happen.

Here's an idea. Prepare a simple one sheet with some basics. Write it in the first person as if your elder was speaking to them directly. Here is a sample:

I'm so glad we are getting together for Christmas. My family is important to me, even when I can't remember who you are or where you belong in the family. You are my family and that makes you special. 

I like to think I have dementia but it doesn't have me, so I wanted to share some things that will help make our time more fun. 

Don't be insulted if I don't know your name, but don't try to get me to remember, either. Introduce yourself each time we meet, and tell me your relationship to me. 

I love to reminisce, but don't start with 'Do you remember?' because I don't. Try saying things like, 'I remember when you used to push me on the swing.' Even if I don't remember, I'll be happy that you do.

Don't be insulted if I lie down part way through our visit. As much as I love to be with you, it exhausts me. I'll come back in a short while. 

Christmas things I enjoy are staring at the lights and the fireplace, and singing carols. Surprisingly, I remember a lot of the words. These are great activities to do together. 

I cry easily, which is embarrassing for me but not something I can control. Don't get upset. Like a surprise rain shower, it's quickly gone and I've forgotten it.

Show me lots of affection. I understand 'I love you' best through a hug.

Merry Christmas,

Of course, you will customize it, but something like this will go a long way to fostering understanding. Send it by email with a note of explanation. Likely you will get feedback in the form of more questions, which can open a healthy discussion and bring understanding.

Care Partner Wednesday--The 12 Ways of Christmas (pt. 2)

Wednesday, 14 November 2018

Care Partner Wednesday--The 12 Ways of Christmas (pt.1)

Maybe where you live, the weather outside isn't frightful, but the calendar is moving forward. Hallowe'en and Remembrance Day are behind us, and our neighbours to the south are celebrating Thanksgiving next week. Black Friday, Cyber Monday--however you look at it, Christmas is coming. 

If you are caring for someone with dementia, Christmas takes a lot of thought and planning. It can be a wonderful time with moments of joy or a complete disaster. Which way things go often depends on the thought and preparation you put into it several weeks prior. Like, now.

Over the next several weeks, we will look at some issues, ideas and considerations you might not have contemplated. If you are a care partner, feel free to comment with your own thoughts. Here are a few preliminary thoughts:

What we always did probably won't work without modification. You may be able to have some form of your precious traditions, but they will probably need to change in several ways.

What we did last year, which was probably already a concession to your new reality, may not work this year. You may need to make plan B. Or F. 

So, start with a clean slate, and let's begin to plan.

Way #1--Decide What's Important

The problem with this is that what's important to you, or your extended family, probably isn't what's important to your loved one. 

Perhaps your family is used to large, crowded, boisterous family celebrations. People come early in the day, stay through the meal and beyond. The adults visit and reminisce, the children run around and play excitedly, carols are sung and everyone sits down to a huge meal together. It takes several hours for everyone to leave, and it's gloriously noisy and fun. 

Maybe in the past, your elder was in the centre of all the confusion, making jokes and presiding over the dinner table, and it would be easy to assume this is important to them now. They may even express how they want to see the family and how they love to watch the little ones running around. The reality is that elders with dementia find confusion and large groups of people overwhelming, long visits exhausting and noisy children, or a lot of noise from anyone, causes anxiety and anger. 

Maybe the Christmas Eve service has been mandatory to start the season, or maybe it's putting up the tree, or bringing out the nativity scene, or Christmas baking. To the best of your ability, figure out what makes Christmas for your elder. What would they miss if it wasn't a part of the season? 

Realize that you can't do it all. Once you have decided on a few activities that will be meaningful, think how you can modify them to suit your loved one's needs and abilities. The Christmas Eve service is always crowded, so perhaps you could have a family member save your seats. You slip in together just as it's about to start and stay seated until the crowds have cleared. Or perhaps you find a similar service on the television and watch it together. 

If trimming the tree is important, you can have most of it completed when your elder is having a nap, but save aside several significant ornaments for them to put on. Then you can dim the lamps and enjoy the Christmas lights together over a cup of hot chocolate.

Whatever it is, the principles are the same: What matters, and how do I need to modify it for where we are today?

Way #2--Reduce Expectations. Fight Perfectionism

Closely aligned to this are expectations. These may come from within in the form of self-talk. "The table would look amazing with Grandma's china and maybe I could make that table centre I saw on Pinterest. We need to have four vegetables and a variety of Christmas baking..." Even at the best of times, we can wear ourselves out with perfectionism, and this isn't the best of times. 

And if our own expectations aren't enough, there's the family's. "Mom, the meal has always been at your house. It's tradition. We'll help more, though, and it'll work out fine." No, it won't. Quietly sit down with family and explain why some of the traditions need to be modified. Trying to make things perfect and maintaining long-held traditions can be a recipe for disaster.

Many years ago, I worked as a cake decorator part-time. Christmas Eve was a busy day and I didn't get home much before six, but our family still wanted to go to the Christmas Eve service. My husband wasn't much of a cook, so we developed the tradition of having pizza and eggnog on  Christmas Eve. I would rush home and it would already be on the table. We would eat and be out the door in less than an hour. Over the years, that pizza-and-egg-nog tradition became an important part of our family history. 

Sadly, it doesn't happen any more. I don't eat wheat or sugar, and there's no one to enjoy it with. Although my children speak fondly of those meals, that tradition has been dropped. The reason for it is gone, the children are grown, and there's no purpose to it.

Look at how your family celebrates, and choose a few meaningful activities. Look for ways to make them work for you and your elder. Then celebrate!


Wednesday, 7 November 2018

Care Partner Wednesday-- 5 Things Not To Say

She was a sweet lady, and not that old. Her dementia was vascular, and the changes in her in the last year had been profound. She'd come to live with her son and his wife because she could no longer cope on her own. In our little townhouse complex, I lived on one side of the park and they were on the other. The chances of running into her were high.

The thought terrified me.

A shy introvert at the best of times, I wasn't good at conversation. I'd never met anyone with dementia, and I was horrified at the thought that I'd say the wrong thing. Or worse still, have no clue what to say. 

Then it happened. I was at the park with my knitting and the little charges in my daycare when she came out with her family. As if drawn by an invisible magnet, she headed to the bench where I was sitting and plopped down. My smile was tremulous as I looked at her, and I dropped a stitch. What should I say?

She asked about my knitting. A knitter all her life, she didn't realize she could no longer follow a pattern. She asked to see my project, then reached for the pattern, studying it like a final exam. Did I have more patterns? I ran in the house to get them for her. She sat on the bench with me, turning over the patterns, exclaiming at the pictures and reminiscing about projects she'd made. When it was time to go in, she asked if she could borrow some of my patterns, and I gladly handed them over. Her son returned them the next day, but in those few minutes, we were two women chatting on a park bench about knitting. Normal stuff.

In this, my first exposure to someone with dementia, I acted on instinct. Thankfully, I got it right. In the many years since I've cringed to see and hear family members and care partners speak to people with dementia in ways that demeaned them and made them uncomfortable. They aren't bad people, and they don't mean to hurt anyone. They simply don't know.

Here are some things not to say or do:

1) "Do you remember my name?" Chances are, they don't, although they may remember that you are someone important in their lives. But a question like that sets them up for failure and embarrassment.
Better to say, "Grandma, it's your grandson, George. I was hoping we could have a visit."

2) "What did you have for lunch?" First, who cares, and secondly, no, he probably doesn't remember. I've noticed people ask this when they don't know what to say. Seriously, how many people do you ask if they remember what they had for lunch? It's lame.

3) "Do you remember--" Grandpa most likely doesn't remember who you are, so whatever else you are asking him to remember is just too much. Again, besides stressing him out because he doesn't remember, a question like that is guaranteed to make him feel stupid. Better to say something like, "I remember when we used to come and visit and you helped me earn Scout badges. You and I made a campfire together."

4) Don't talk about the elder as if he isn't in the room. "How is my dad doing?" Those are conversations to have privately.

5) Don't use condescending language. "We just had a nice lunch, didn't we George?" It's demeaning. Think to yourself, "Would I talk like this to anyone else in my life?

When I started working with people with dementia, I knew nothing, and I was as nervous as I had been that day at the park. I quickly learned, however, that they are generally the most loving, forgiving people with amazing stories.

Care Partner Wednesday--5 Things Not To Say