Wednesday, 9 January 2019

Care Partner Wednesday--I Am Not My Disease

The first care conference is often long.

Held a few weeks after a resident moves into care, it's the family's chance to meet with the doctor, nurse, physiotherapist, chaplain, dietary department and advocate. Through questions and discussion, the team gets to know the resident better, and a plan of care is worked out. It's fluid, of course, and changes are made as needed, but it's a start.

We'd covered a lot of ground. The husband had given us valuable input as to his wife's character and what activities gave her pleasure. A new patient for the doctor, he learned her medical history. We discussed the transition time and how we hoped to make it as smooth as possible.

As an hour drew to a close, her husband turned to me and said, "I have just one more question. Is she going to get better?"

The room seemed to reverberate as the question bounced off the walls. How long had he held some hope, however faint, that this would pass?

I looked into his soft blue eyes and said, "No, she's not."

His look told me he'd known but needed to hear the words. "Is she going to get worse?"

Most days, I love my job, but right now..."Yes, she will get worse."

He cast his eyes to the floor and replied, "Thank you for your honesty."

"The thing is," I went on, "we believe that people with dementia can live full, even happy lives. We want her to have purpose and meaning in her days. To attend activities she enjoys and to feel as if she is at home here. Our goal is that she will have a quality of life and feel fulfilled, even to the latter stages of dementia. The staff care about her as a person, and the life she lives is important to all of us. She's in a good place."

His eyes returned to mine as what I said resonated with him. "That's reassuring."

It's not about dementia, difficult behaviours, forgetting a family member's name or putting your clothes on backwards. These things happen, but they aren't the focus of our day. It's about respect, family, laughing together, and feeling at home. It's about having a fulfilled life and feeling you still have something to contribute.  I've known elders with no cognitive impairment, but little quality of life, either, as bitterness at the ageing process has stolen their joy.

So my question is...which is worse?

Last May, I sat in a full auditorium listening to a man with Alzheimer's tell of his journey. It wasn't an easy one. His wife left him and wouldn't even let him keep the dog.  His children didn't understand, and aside from the loving support of the Eden Alternative crowd, he stood alone. Alone, but bravely, he said, "I have Alzheimer's, but it doesn't have me."

As care partners, we can enter an overwhelmed mindset. Bad things happen. Sometimes we are torn to the core by the changes we see. It hurts! But know this--the person you love is still there. They can live, and love and make a difference and add to your life. Don't give the disease more power than it should have.

Love them, laugh with them, appreciate them for who they are today. Don't let Alzheimer's--or any disease--have your loved one.

Care Partner Wednesday--I Am Not My Disease

Wednesday, 2 January 2019

The Small Miracle of Strength

You face a new year, and perhaps some of the struggles of the last year or two enter into the new year with you. January brings a fresh, unblemished calendar, but you carry your load and who you are with you. Sometimes, the weight of it bites into your shoulder as you try to move forward.

"You are strong."
"You'll be fine."
"Look at all the other hard things you've been through."

Over the last two years, as I struggled through the emotional roller coaster of separation, I heard these words. So many responses coursed through my brain. I am many things, but not strong.

Is it strong when your situation is thrust upon you? I didn't climb a mountain or win a medal. I put one foot in front of the other. Some might consider that strong, but I felt like I had no choice.
I'm told there is always a choice, and I guess that's true, but I couldn't drop out of life. I have to work and make a living. Even working full-time, money was tight, so curling up in bed wasn't a choice I felt I could make.

Strong? Did you see me hide in the bathroom and cry? Sit at my laptop and claim my allergies were bothering me? Bury my face in my dog's fur? Stay home from church for weeks because I couldn't face people? Quake in the lawyer's office? Feel my insides twisting into mush while smiling and dealing with issues at work? Strong?

I know your words are meant to encourage me, to build me up, to help me believe I can come through. The truth is, they invalidate my pain. It's as if you are metaphorically punching my arm and telling me to stand straighter and deal with my situation because I am strong.

I. Am. Not. Strong.

I value courage, and in the past few years, God has been drawing me from a tiny, shrinking life, where fear influenced every decision and I made only safe and easy choices. He showed me the person fear was turning me into, and it shocked me enough to ask Him to help me change. One Sunday in church, the pastor was talking about the new name God gave many of His servants when they chose to follow Him. Abram became Abraham. Jacob became Israel. My friend leaned over and said,
"Your new name is Courage,"


I took faltering steps toward courage. I fell. I turned back and embraced fear. I took a step, rejoiced and fell again. I moved forward by painful inches. You would think that each victory would make the next step easier, but it didn't. Even today, I struggle.

God doesn't tell me I'm strong. He knows me too well for that. He tells me to be strong.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9 NIV God offers me His strength, which is an unfathomable resource. He takes my quavering efforts and says He will be with me. Holds me. Picks me up if I fall and grabs my shirt if I try to run away. He never gives up on me. Never.

Because of that, I can be strong, even if I'm not strong.

We bring all of our baggage into this new year.  We bring who we are, for better or for worse. We don't know what this new year holds. But you, like me, can be strong.

Listen to what He is saying to you:

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isaiah 41:10 NIV

Be strong, my friend.

The Small Miracle of Strength

Wednesday, 19 December 2018

Care Partner Wednesday--The 12 Ways of Christmas (pt. 6)

There's a lot of counting happens at this season. Have you noticed that? Advent calendars countdown until Christmas, merchants count the days until Boxing Day and then extend it a week or longer, and we count down to New Year's. All this counting can add a lot of pressure to our schedule as the deadline looms closer.

Care Partner, is anyone counting on time for you?

11. Take care of yourself 

This is an old drum I'm beating, but only because it's advice difficult to follow. All of your focus tends to be on your loved one, and it's hard to justify and even harder to ask for time for yourself. It may seem obvious, but we still struggle with care partner stress and justifying time for us, so here's a few reasons why it's important:
1) You're not a nice person when you're stressed. Patience wears thin and you say things you don't mean in a tone of voice you wish you hadn't used.
2) You don't enjoy the experience when you're worn out.
3) You tend to miss the magic moments--those special times where clarity and wisdom meet and you catch a glimpse of who your loved one used to be.
4) It's a short walk between feeling tired and unappreciated to depression. A walk you want to avoid.
5) Stress is unhealthy und can lead to all kinds of physical implications.

So, what's fun for you this season? Do you like to shop? I can't imagine it, but I've heard there are people who do. Do you enjoy baking, spending time with children or grandchildren or curling under the twinkling lights of the tree with a good book? Whatever makes the season for you and rejuvinates you, identify it and take steps to make it happen. Ask for an hour from visiting family or arrange for a friend to give you that gift of time. Don't feel guilty or apologise for asking. You are investing in you today so you have more to give your elder tomorrow.

12. Good things come in small portions

At thanksgiving this year, I cooked a turkey and all the fixings for our residents. The fixings included stuffing, cranberry sauce, two vegetables, potatoes and gravy. Even when serving small portions, plates were loaded because a little of each item added up to a lot. For some, it was overwhelming. Be aware that most elders have small appetites and pare the meal down to those essentials that make it enjoyable. Sometimes just a taste of a favourite is enough.

It's almost time. Gather all the ways of Christmas and create a memory together this year that all of you can hold close to your hearts. Merry Christmas, all!

Care Partner Wednesday--The 12 Ways of Christmas (pt.6)

Wednesday, 12 December 2018

Care Partner Wednesday--The 12 Ways of Christmas (pt. 5)

On Thursday, we are making our annual trek to Christmas shop for the residents. Four of us commandeer two carts each and fill them with fuzzy socks, lap blankets, lotion, ladies' scarves and whatever else we can think of. This particular store is down a set of stairs, so watching us haul multiple bags up those stairs and through the mall is comical. We struggle them back to work and fill the gift bags with the articles, personalizing each present. On Christmas eve, Santa stops and hands out the treasures as residents drink egg nog and snack on sugar cookies. It's a lovely tradition.

As I stand in the store each year with my list, trying to figure out what would be the best gift for this or that person, I always have a moment of panic. Did I get enough gifts? Will they like them? Can we get them all home? There's no doubt that shopping for people in the last few years of their life is a challenge.

9. Look for creative gifts

Between birthdays and Christmas, I've given many gifts to elders over the years. As a care partner, you may get asked by family and friends, "What can I give them?" It's not an easy question to answer. Here are a few of my suggestions:

  • Elders often have poor circulation. Because of this, they may feel cold when others in the family are sweating. Socks, cardigan-style sweaters, lap blankets and shawls are often appreciated through the winter.
  • Lotion and more lotion. Make sure it's a good quality, as an elder's skin needs to be protected. The smallest crack can become a wound, so lotion is appreciated.
  • A notepad or blank book. If they can still write, this is a great gift.
  • A picture in a nice frame. Capture a shot of your elder cuddling a great-granchild or holding a new baby. Or by themselves in the garden or other great background. A good picture of themselves is never disdained.
  • Dates. No, not the edible kind. A gift of time is one of the most precious commodities to someone whose time is limited. A coupon for time together at a local coffee shop, lunch together or multiple coupons for visits during the year would be much appreciated. These can also serve as a gift of time for you as care partner to have a few hours of respite. 
10. Remember Christmas past

Some people's hesitation regarding spending time with elders is, "I don't know what to say." The answer to that is an entire blog, but suffice it to say that reminiscing is a fun way to spend time together. Even if they don't remember, you do. Don't begin with, "Do you remember the time..." They may not, and that may cause distress. Instead say, "I remember when..." Tell stories of times you spent together, especially funny ones or those that show how much this elder has influenced you. Go beyond Christmas and explore your family history together. Pull out old photo albums to spark more memories. Laugh. Perhaps cry. Remember.

Time is your most precious gift because you only have a set amount of it. You can make more money, but you can't make more time. When you give someone your time, you are giving them a portion of your life that you'll never get back. Your time is your life. That is why the greatest gift you can give someone is your time." Rick Warren 1



Wednesday, 5 December 2018

Care Partner Wednesday--The 12 Ways of Christmas (pt. 4)

Have you ever thought about what gives you purpose? What makes it worth getting out of bed in the morning? What gives you satisfaction at the end of the day? Which moments in your day do you look back on and treasure, because of something significant?

Purpose is key for all of us. There may not be "aha" moments every day, but at some point, we need to feel that what we are doing is making a difference, contributing to the life of others or helping in some way.

This is truer than ever as we age. When elders need more care and are less able to "do," it's easy for them to feel that they have no purpose. No reason to be around. They don't want a constant diet of entertainment, they want to feel they have something to give. This is true no matter where they are in the ageing process.

7. Bring purpose to Christmas preparations

If you are keeping things simple and slowing the pace this Christmas as has already been suggested, there are many ways to do this. Look at your elder and ask, "What do they enjoy doing?" This answer may be different from last year or even six months ago. The next question is "What are they still able to do?" And finally, "What changes could I make in how we do things that might make the impossible possible?"

Here are a few examples:

Few of us send Christmas cards any more, but for the last generation, this was an important ritual. I remember my mother not only sent cards but wrote a personalized note in each one. She disdained Christmas letters even when some of her cards were sent Christmas eve. (Her daughters both send Christmas letters, and I am a big fan of the email variety!) If your loved one treasures Christmas cards and being able to send them, what can you do to make this happen?

  • one daughter buys and addresses all the cards, but her mother is able to sign her name to them.
  • "With Christmas cards, my mum still wanted to send them out, so I got her to write her name on a piece of paper. I then scanned, resized and copied them and printed them out onto computer labels. Mum helped me stick in a few of the labels so she felt involved, and I wrote the recipient's name at the top and did the envelopes. We did about 25 cards for her that year, and she would never have been able to write her name more than once."1
What about shopping? Many people enjoy giving, and there may be ways you can customize the experience to make it possible. Get a transport wheelchair (the foldable kind) to make the trip easier. Choose a weekday when the mall is likely to be less crowded. Scan the fliers together another day and make your list, and make sure to plan on only a few purchases per trip. One trip may be enough for some elders, with you doing the rest of the shopping on your own. 

Baking? Look together for favourite recipes and decide what you are going to make. Like other activities, don't think ambitiously. The experience is the important ingredient.

Be creative. There are many opportunities to bring purpose to Christmas.

8. Try something new

To this point, we've focused on the familiar, the traditional and what your elder always enjoyed. That's valid, but there's no saying something completely different won't bring delight.

After my mom died, my dad floundered for several years, trying to find his way without her. One of our Christmas traditions with my kids was to make a gingerbread house--the more candy the better. One year, on a whim, I invited my dad to come over on the night this creation was being constructed. My straight-laced, retired-pharmacist dad blew me away with how he entered into the fun, carefully choosing which candy would look best on the roof and which should go in his mouth. I have pictures, and they show the joy on everyone's faces. After that first time, it became part of the tradition that Bubba helped with the gingerbread house.

There are no boundaries or rules. Using your creativity and ingenuity, create a Christmas memory!



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)