Wednesday, 29 June 2016

Care Partner Wednesday--Humour Can Save the Day

Georgina has can anxiety disorder. She doesn't have dementia, but she perseverates (goes over and over the same issue) on many troubles. It doesn't matter if all was well with this problem yesterday. Today is a new day, and you never know...

I have a long history with Georgina. Sometimes, I need to reassure her, sometimes talk to her a bit more firmly than normal, and sometimes, humour works.

Today, she was going over and over the issue of the corn on her toe, her shoes, which pinch because of the corn on her toe,  and her corn plaster. "I'm not sure if it's on or it fell off."

Keep in mind this was the third or forth time we'd had this conversation. "Georgina, do you mean the corn plaster or the toe? Because if it's the toe, we really have a problem." She looked at me blankly for a minute, and then a ghost of a grin spread reluctantly across her face.

Humour worked this time.

In your entire arsenal against caregiver stress,  a sense of humour is your best weapon.

I can hear the protests now. "Are you nuts? There's not a thing funny about this situation. My heart is breaking, I'm exhausted and most of the time I have no idea if I'm doing the right thing. How can I laugh?"

In many ways, that's true. But the ability to see the funny side of a situation and to laugh when crying is also an option can be your salvation. You're not laughing at. Sometimes you're laughing with, and sometimes you're just laughing.  Laughter can give you the strength to go on.

"A good laugh dissipates more dark clouds than any other one thing." - Laura Ingalls Wilder

In the stories I am about to share, the names have been changed and the people left us long ago. But the stories still make me smile.

Velma had an incredibly sharp mind until the last year of her life. She worked complicated crossword puzzles every day and had many opinions on politics and current events. She loved the symphony and was every bit a lady. Later in life she had a stroke, and her mind became uncharacteristically confused. She hoarded the garters used for the kind of briefs she wore, and was convinced the staff was stealing them and selling them on the black market. (There's a black market for those kind of things?)

One day, Velma made a slow journey down to my desk. Every step was work, but she soldiered forward, grasping her walker and moving with a slightly tipped gait. I saw her coming and wondered why she had ventured this far. In her present state, a journey like this was a lot of work. I stood from my chair as she arrived, wondering how I could help her. For a few minutes, she stood silent, although she seemed to be concentrating on something behind the desk. Ignoring my questions, she began to shake her head. She pointed to my chair. On it was a back rest which displayed the name of the company--Therapist's Choice.

"The Rapist's Choice." read Velma, shaking her head. She turned to leave, but I heard her mutter to herself, "Makes you wonder what they're doing down here."

A lady from our independent living apartments came to my desk, looking as if she had lost something. I asked her if I could help her.

"I'm looking for Ann Peachman Stewart, but she's on vacation."

"I'm Ann Peachman Stewart."

"Oh, you're Ann Peachman Stewart when she's away?"

No, I'm Ann Peachman Stewart all the time."


Brigit was a delightful blind Irish lady who lived in our dementia unit. She had strong opinions about everything, and wasn't the least bit shy about expressing them. Her blindness was recent, but because it was combined with dementia, she didn't have the heightened senses many other blind people have.

One day, the piano tuner arrived just before lunch. He began to work on the piano in the lounge where Brigit was sitting, waiting for her lunch. As he systematically plinked and plunked his way up the keyboard and down again. I noticed Bridget was becoming agitated, making "Tsk." noises and wiggling in her chair. Just before he was done, she could stand it no longer, and burst out with, "If you canna play the thing, you'd be better to leave it alone!"


Even when grief is fresh, there can be a funny side. I had a newly widowed wife ask me what to take to the funeral home. Did she need underwear? I told her to ask the funeral home. I had no idea.
But it's certainly something to ponder in the middle of the night.


And when I was at the funeral home planning my husband's memorial service, I was asked to look at urns. I burst out laughing, and got a started look from the person helping me. How could I explain to her how funny Bill would have found that? He wasn't an urn kind of guy. I ended up buying boxes at the Dollar store with pictures of shells on them. Much more his style.

As you start your day as a care partner, ask God to show you where the smiles and laughter lie. It will make your journey a little lighter.

CONTINUE THE CONVERSATION: Do you have a story or two? Share with us!

Wednesday, 22 June 2016

Care Partner Wednesday--Stress pt. 4

I can't stand it when people tell me to do or be something, or to not do or be something. Who are they to tell me, and if I am that thing, how am I supposed to stop?

The "Don't worry, be happy," guy drives me nuts. I am worried and I'm not happy, so stop singing.
Saying, "Be_________" (just about anything--you fill in the blank) feels like bossiness in the extreme.
It makes me grumpy.

However, I can't think of another way to say this. If it makes you grumpy, I will understand.

8. Be flexible.

When I was a young bride (I'm an old bride now) we used to joke about my I.L.T. This with a piece of note paper that contained a list of chores I hoped to accomplish in a day. At the end of the day, the more items crossed off, the better I felt. I.L.T. stood for Impressive List of Things, and it kept me on track during the day. Not a bad thing, it produced focus. The problem came when the I.L.T. became my god, and accomplishment was the only thing worthwhile in a day. The goal was to have a crossed-off list to display for my husband at the end of the day. Anything--children, phone calls, interruptions of any kind, even a friend dropping over, became a hindrance. What was a useful tool became a ball and chain. 

It took me many years to learn to be flexible. My best and dearest teachers were my friends with dementia. They showed me what mattered, and it wasn't a list of accomplished tasks.

Care partners learn whole new levels of flexibility. Here are a few of the lessons:
  •  Getting someone dressed and ready for the day can be a full day's accomplishment.
  •  Unplanned moments of clarity or fun are more valuable that a vacuumed floor. 
  •  My agenda may not be the best one. This was a tough lesson to learn, because the tasks on my list, or the mental list in my head, weren't getting accomplished. However, tomorrow or next week, I won't remember what they were, or they will need to be done again. But those few minutes we stopped to eat ice cream cones in the sun will remain with me forever, and the joy of the experience will leave an impression, if not a memory, on my loved one.
  • I can ask for help for some of the things I need to accomplish. I can, and I should.
  •  I am not defined by what I accomplish. That's a great life lesson, by the way, and one I still struggle with on occasion.

If you are a care partner, realize ta list of tasks to be accomplished can cause you great stress. Look at your day, and decide
1. what absolutely must be done
2. what needs to be done by you and where you can get help
3. what can wait until tomorrow
4. what can wait indefinitely.

Here's another thought. Start your day with prayer, and ask God to show you how to order your day. You'll be amazed how priorities fall into place.

Next week, I want to talk about maintaining a sense of humour. Hold onto your hats, folks--I have stories!

Continue the conversation: is flexibility difficult for you? What have you learned about yourself as you try to be flexible in your journey as a care partner?

Wednesday, 15 June 2016

Care Partner Wednesday--Stress pt. 3

Care partners are often making tough choices.

When should I insist on doing all the driving? Can Mom safely live alone? Where can I find respite care for Dad? These are heart-wrenching. An even harder decision can be the day the care partner realizes she can't do it all. When the demands on her life mean that some of the things she holds dear are going to have to change.

Resentment boils up. "I've given up so much. Am I to give up all the fun in my life as well?"

Molly always hosted the family Christmas get-together, and she loved it. She was all about family and celebrating. For weeks and even months ahead, she baked and shopped, decorated and planned. It wasn't a chore. The anticipation of the event and the looks of pleasure on her family's faces gave her hours of joy. It was her thing, and she loved it.

But not this year. Since Mervyn's stroke, she had been his caregiver. Her children were relieved when their dad regained his speech and mobility, and were celebrating his return to "normal."   Molly knew they didn't realise how much she was supporting him. He needed help with dressing and bathing. Beyond that, he couldn't help with things around the house like he used to. She carried that entire burden. She'd hired someone to shovel snow and make minor repairs, but everyday tasks landed on her shoulders. Instead of the usual joy and anticipation, thoughts of the Christmas season were a black cloud on her horizon. She wanted so much to do it, and resented the realization that she couldn't.

6. Learn to say "no."

It's often the most difficult syllable to utter, especially if, like Molly, you are turning down something you like. There is guilt involved ("I don't want to disappoint them.") and unrealistic expectations ("Maybe I could do it.") All of us--even those who aren't care partners--find it painful to have have those conversations. But if you don't say "no" when necessary, you are adding unnecessarily to your burden.

Some times "no" isn't the only answer. Think creatively and communicate. Find ways to make if happen. It may not look like it always did, but that's okay. It may even be better.

Molly's story has a happy ending. She invited one of her daughters for coffee. (She didn't feel up to meeting with all of her children.) When she explained the situation, there were tears as Molly revealed how much she was doing for their dad. Her daughter realized the family hadn't done a good job of looking after Molly, and immediately talked to her siblings. In a few days they had a plan.

To ease Molly's burden immediately, they arranged for weekly housekeeping and installed a dishwasher. They changed how they visited so that Molly had some "alone" time and some "fun" time.

As for Christmas, one of the children took over the hosting, but everyone pitched in, and Molly was the director of the proceedings. She went shopping with them, helped decorate and participated in ways that gave her joy without being a burden. The family found new ways to celebrate and developed new traditions.

"Don't let your mind bully your body into believing it must carry the burden of it's worries." Author unknown

7. Develop realistic expectations.

Of course, this is related. it wasn't realistic for Molly to consider hosting the celebration.
There are other, smaller concessions that often need to be made. Because being a care partner is always changing, you need to re-evaluate situations constantly. What works this week may not work next week. Or tomorrow.

Consider some scenarios:
  • George and Sylvia always go on a winter vacation. They look forward to it and plan it for months. Now Sylvia is in a wheelchair and needs assistance with the activities of daily living. Travel like they are used to would be difficult for both of them. On the other hand, they could consider other options, such as 
  1. George could hire a private duty personal support worker to go with them.
  2. They could stay in one place with support rather than travel.
  3. They could plan a few shorter, closer trips
  • I learned this in my own family. My sister is 10 years older than me, and her children spent lots of times with my parents. My mom babysat, and they were close to her. By the time I had children, Mom had early Alzheimer's. She often remarked that she couldn't wait until my oldest could stay alone overnight with them. That never happened. I brought her (and later, her sister) over to the house frequently and my parents visited my house. We did things together, and Mom had a great relationship with them and loved them to bits. But I recognized they wouldn't have the same kind of relationship with my parents as my niece and nephew did. Things had changed.
Take a hard look at today. What is possible? What isn't? What might be if you look at creative solutions? Then go for it...

Keep the conversation going--what creative solutions have you found? How have you adjusted your expectations?

Wednesday, 8 June 2016

Care Partner Wednesday--Stress, part 2

If you're not a care partner, you don't understand.

"Your mother's in a home, so you're not really caring for her, are you? All you have to do is visit. The staff at the home do all the caring. That must make life so much easier for you."

Do statements like that make you want to scream?

The reality is that when the physical demands aren't as difficult (such as when someone else is doing the physical care) the emotional demands are still huge. How do you deal with watching deterioration in someone you love? How do you keep up with a constantly changing situation? How do you do this without falling apart inside?

Then there are appointments with specialists, assessing speciality equipment, attending care conferences, talking to the doctor, and arranging outings. Visiting, arranging family visits and planning for special events. Anyone who thinks your life must be easy now that your loved one is in care, has never been a care partner.

Physical, emotional, behavioural, even spiritual challenges. All these lead to stress. What helps?

There's no perfect answer, but many strategies. Here are a few more to add to your arsenal. Everyone needs to find their own road.

“A good laugh and a long sleep are the two best cures for anything.” — Irish proverb

4. Stay in touch with family and friends

One of the aspects of care is that your world shrinks. Part of it is the time that caring for your loved one takes, whether it's visiting, transporting to appointments, arranging legal and financial matters or hands-on care. It takes time, and that's time you aren't available for other pursuits. Because of the time commitment, there is less energy and it's easy to turn down opportunities to be with family (especially extended family) or friends. It's so tempting to say, "I can't right now. Mother needs me."

Don't. Those people are your support system. They are the ones who, even though they may not fully understand, will listen and love you. They will take you away for a day or an evening, and give you the opportunity to laugh. Some of them are long-term relationships, and you need to find a time to nurture them. Your friend or family member can visit your loved one with you. Another person in the room can give the visit a whole different dynamic, and take some pressure off you. Or, they can visit instead of you, and give you a day off.

I have friends who cared for me in various ways when I was caregiver for my husband, and later when I was a widow. Two friends took me out to a local restaurant for every significant date during the first year, such as Father's Day or his birthday. At the end of that year, we realised we'd become a support group for each other. We still meet today. One of our group became a widow this last year, so we are ministering to her just as they did to me. 

Another friend invited me to knit and chat on a regular basis. Sometimes we talked about nothing of significance, and sometimes I shared my journey, but it was a delightful connection that supported me through a rough time. We are still knitting together today.

Cherish the connections with friends and family. They are gold.

5. Make healthy choices about nutrition, exercise and sleep.

This isn't rocket science, but it can be incredibly hard. Again, it's a time issue. If your time is consumed with your task as care partner, there are times when you do what is easiest.  It's easy to grab something quick rather than make a proper meal. Fast food is the answer too often.

When my husband was in the hospital, I would go there straight from work, and eat whatever I could pick up in the food court. At about 9:00, I would come home, arriving after 10:00. I couldn't do anything about dinner, but tried to have a healthy breakfast and lunch. I walked to the subway to get a little exercise. And although I would at times sleep the sleep of the exhausted, and sometimes not sleep at all, I tried to rest when I could.

The bottom line is, you do what you can. Every choice you make that is healthy for you will make you stronger.

More able to complete your task as a care partner.

Which is what it's all about, right?

More next week...

Continue the conversation: How have you set maintaining relationships as a priority? What has been the effect? What tips have helped you live a fairly healthy lifestyle while under the time constraints of being a care partner?

Wednesday, 1 June 2016

Care Partner Wednesday--Stress, part 1

The care partner's journey has many aspects. Fear, laughter, love, insecurity, exhaustion are just some of the aspects. But there is no denying the stress, and today I am starting a series on dealing with some of the aspects. I don't have all the answers, but you may find another tool you can use.

Just like there are all kinds of care partners, there are many forms of stress.

You may be experiencing only some of the symptoms. Perhaps your stress is more emotional than physical. You worry about the future, you wonder how this is affecting your family. You want to scream when the same question is asked yet again. You feel guilty about your feelings, but wish you could share them. You are not physically caring for your loved one--he is still able to do that for himself. But you are living with unrelenting emotional stress.

Much of what I am going to share isn't rocket science. But when you are being constantly bombarded by a stressful situation, sometimes another perspective helps.

There is also an aspect of giving yourself permission. Permission to take a break. Permission to laugh. Permission to not feel guilty. You may be too close to the situation to grant that permission, so I am going to give it to you.

These suggestions are in no particular order:

"Things turn out best for those who make the best of the way things turn out." Jack Buck

1. Get help.

There's no denying that being a care partner makes routine tasks more challenging. Perhaps you can't get your house clean. Getting to doctor's appointments leaves you both exhausted and wondering if this was worth it. You fantasize about a whole day to yourself. Asking for help is probably the hardest thing you will do. But the fact is, there are often family and friends wondering how they can help you, who would be delighted to know something specific they can do. And if you need to pay for help, then do it. Having your house cleaned professionally even once a month to preserve your sanity is a good use of funds. You may also qualify for some government assistance in this area. It's worth asking the question.

I will confess that I was terrible at this. I didn't ask enough. I was terrified of the embarrassing scene where I ask and they hesitate, frantically searching for a reason to put me off.  That could happen, but it's more often the case that if your family and friends see your need, most of the time they are willing to help in some way.

2. Don't give in to guilt.

Guilt is like the worm in the apple. At first, no one can tell it's there, until you see the whole apple has become rotten. Guilt bores into you in insidious ways, nibbles away at your thoughts and takes away your joy. Guilt has all kinds of languages.

  • The language of the loved one- "You never come and see me." (I was here two days ago.)
  • The language of family- "Why can't you come to this family event? We never see you any more."
  • The language of acquaintances- "My, you don't look well."
  • The language of church friends- "We haven't seen you for a while. Are you all right spiritually?"
  • The language of doctors- "You need to ensure he gets this medication on time."
  • The language of yourself- "I'm not doing enough. I'm not doing it right. I'm not ___________"
Most of the guilt comes from the last voice--your own. We are incredibly hard on ourselves.

I remember one night when Bill was in our local hospital, and I was on the bus on my way home from work to see him. I received a call from the hospital, telling me that he was in the process of being transferred to a hospital in the city. So he was heading in one direction, and I in the other. It was impossible for me to visit him that night--by the time I got there, it would be time to leave. I had a rush of joy, realising I could go home and put my feet up. This was followed immediately by a rush of guilt. My husband was seriously ill, and I was thrilled to be able to have a hot bath and read a book. What kind of a terrible person was I?

I was a care partner who needed a break.
Don't give in to guilt.

3. Look for a support group

There is a reason this point follows #2. You probably will feel guilt, and if you live entirely in your own mind, you won't be able to deal with it. You need to talk to someone.

One of the functions of being a comparatively young widow was that when I was going through my most intense caring times, none of my peers really understood. They loved me and cared about me, but they weren't in the same position. It would have been so valuable to me to have someone to talk to who actually understood. 

The Alzheimer's Society has all kinds of teaching group which give opportunity to talk with others who are going through the same experience. Many churches are recognising this need, and have groups for caregivers, as well. Check community centres and other resources within your area. Obviously, something close and convenient is important. Because time is limited, you might find your best resource is online. There are hundreds of online groups on Facebook and Twitter, and it's a great way to connect with others making the same journey. I have made some wonderful friends who I have never met personally.

It's a lonely road. Don't walk it alone.

More next week...

What is your most difficult stress as a care partner? What works best for you in dealing with it?