Sunday, 22 December 2019

The Small Miracle of the Next Stop

"Next stop, Melita Avenue."

For just short of twenty-one years, I've heard those words as the bus pulled up to Christie Gardens and I crossed Christie Street in Toronto to go to work. Usually, the bus came late and all of us who stood shivering in the bus stop, or roasting in the summer, complained to no avail. Usually, I lugged at least one bag, sometimes several as I crossed the busy street. Usually, I stood in the centre of the road, waiting for cars to pass because no one bothers to use the crosswalk up the street.

Yesterday, "usually" didn't happen. Yesterday I retired.

I turned 65 in May and in the summer faced the decision which had haunted me for at least a year. I loved my job and couldn't imagine life without it, but the commute to work took a toll on my body. The three hours each day involved a short car ride, then train, subway and bus. In this accessible age, I still struggled with hundreds of steps and my arthritis protested more with each passing day.

 Even at work, although the physical aspects of the job remained minimal, when they occurred I struggled. The days we replaced all the residents'mattresses I wondered if I would survive. Do you have any idea how heavy and unwieldy a mattress is as you drag it down an interminable hallway, into an elevator and down another hallway out the door? Times 30?

As I pondered the decision, I realized my horror of two scenarios. At Christie Gardens, many staff stay for years. We have employees who continue to work after 35 years. No one wants to leave. However, over the years I have been a part of closed-door conversations where I heard the comment "she needs to retire." I didn't want that said of me. Secondly, I didn't want to put my fellow Advocates in a position where they needed to pick up the slack for me because the physical aspects of the job were too challenging. This dismaying situation loomed and I hated it.

I prayed over the summer months. Could I do this? Should I do this? God answered and I made the decision. It ripped my heart apart to contemplate leaving my Christie Gardens family, but I needed to trust Him for the next stop. Many times I asked Him about it. I like to plan, you know? It seemed like a reasonable question. Each time He said, "Trust." Not the answer I looked for but exactly the one I needed.

Peter wouldn't have experienced walking on water unless he'd obeyed Jesus' command to get out of the boat. He didn't know what came next  and the directive must have seemed both crazy and terrifying. I get that. The only saving grace came from the fact that Jesus did the asking. I get that, too.

Here I stand. I look back with overwhelming thanks for all He taught me, for the experiences, the growth and the many wonderful friends. Then I look forward, grasping the hand of the One who helps me step out of the boat.

Now, together, we walk on the water.

The Small Miracle of the Next Stop

Wednesday, 18 December 2019

Care Partner Wednesday--The Key to a Fulfilled, Guilt-Free Christmas

Imagine a keyring containing many keys of various sizes. Some you may not even be sure what they open. One key dominates. Large, old fashioned and gold, it obviously opens something important. Each key has its purpose, but this one is more significant than all the rest.

This is the key to a great Christmas.

Is the suspense overwhelming? (Maybe we could have a drum roll at this point?)

The Key:  Know your elder

If it sounds simplistic and maybe a bit condescending, hear me out. So many families make the mistake of remembering what was important in the past or even last year, but with dementia, that mistake can ruin a family time. Even without cognitive decline, physical changes can turn what was once a pleasure into a chore. Take a few minutes to assess.

1) Did this tradition/activity give pleasure to them in the past? If the answer is yes, perhaps a modified form of it would bring joy and purpose now. For example, maybe mom took great pride in the mounds of Christmas cookies her kitchen produced. Perhaps sitting with you and rolling out sugar cookies or adding sprinkles could be fun and meaningful. Or that same activity may serve to point out her inabilities. Know your elder.

2) Last year dad's best time was when all the grandchildren visited. Perhaps you could plan for a similar event this year. Or it may be that the roughhousing of little boys will trigger anger in him. Know your elder.

Having said this, there are always surprises, good and bad. Nothing is 100 percent certain, and you need to give yourself the freedom to fail. If something didn't work as you hoped, retain your sense of humour and move on.

Other keys:

Small Groups
Does your family favour large gatherings with all cousins and grandchildren? These are lovely, but might be too much of a good thing for your elder. You may need to skip it, or perhaps some modification would work. Is there a room where they can visit with family a few at a time? Or perhaps the family would visit at home in small groups.  Explain to those involved how small groups and short visits make the time stress-free and meaningful.

Way of Escape
Some elders can handle and in fact, thrive with the large, family group. However, even these benefit from a way of escape. If aggression or anxiety is something they deal with, watch closely for signs of this and have a room available for them to withdraw to. After a period of time, they may be able to return, or others can visit them there.

No Name Game
Educate your family regarding how to approach your elder. They probably won't know names and relationships may not be important to them. Teach people to introduce themselves in the most natural way possible. "Hello, Grandpa, it's Charlie." Never, never put them in the position of guessing a name. It's a game sure to bring anxiety and failure and serves no positive purpose.

Keep the Routine
One of the difficulties of the holidays is that the pace brings exhaustion. A crazy paradox isn't it? The holidays wear us out. One way to reduce the stress for your elder is to keep whatever routine is normal for them as much as possible. If a nap after lunch is normal, look for ways to make that possible. Familiar routine is a precious gift.

Encourage the Gift of Time

"What shall I give Grandpa? Does he need anything?" You may hear this question many times. The answer is always the same. Give the gift of time. Multiple short visits throughout the year are the most precious gift. Give other family members ideas about how to spend meaningful time. Suggest looking through old photo albums together, a stroll through the garden or sharing fun family stories are all ways to enjoy precious time together all year.

Next week: look for the newsletter. Not signed up yet? Click this link.

Care Partner Wednesday--The Key to a Fulfilled, Guilt-Free Christmas

Wednesday, 11 December 2019

Care Partner Wednesday--Care Partner Stress--How to Manage Without Meltdown

Brenda worked full time, cared for her family and spent most weekends with her mom, who lived in a local care home. She would bring her to her home, where she could play with her three-year-old great-granddaughter and visit with Brenda. Sometimes they would do a few errands, Brenda would do mom's laundry and make her a home-cooked meal before taking her home. The repeated questions would continue throughout the day, but Brenda had determined a long time ago that a way to honour her mother was to give her the gift of patience. 

But this day was different. Her mom went to the washroom and didn't quite make it. Brenda cleaned her up, but the combination of the urine smell and the infected weeping sores on mom's legs made her gag. Mom's repeated questions and frequent bathroom trips wore Brenda down until she heard herself being short with her mom, something she'd promised herself she wouldn't do.

On the way home, she wept. When she arrived home, she called her sister and sobbed out her pain. So disappointed in herself for her impatience with her mother, she confessed she was afraid she couldn't care for her any more. 

Brenda felt classic care partner stress.

The stress that results from caring for an elder, whether full-time or in any other scenario, can overwhelm.
"Am I doing this right?"
"I feel angry, then guilty, then angry again."
"I have to do this. What if I can't? What if I fail?"
"Does anyone understand what this is like? Does anyone care?"

Here are some practical survival techniques. 

Handle Guilt
Easy to say, sometimes hard to do. Look at your other responsibilities, and decide what you can and can't do. It's easy to hear the voices, "This is your mother, who did so much for you. Are you saying you can't care for her when she needs it?" The reality remains you have a husband, family, job and other responsibilities. Take an honest look at what you can do. Refuse to let guilt make your decisions for you.

Approach Family
My observation is that in most families one person becomes the main caregiver. It's difficult, especially if you're already stressed,  to approach siblings about sharing in the care. Difficult but essential. Have a frank conversation which looks at ways they can contribute. If siblings live out of town maybe they can contribute financially. Share honestly about the need and give them a chance to respond.

Accept Help
You know those people who say, "If you ever need anything..." Make a list of the people who have offered to help at some point, the areas where you could use the help, and then try to match them. If only a few of these pan out, you're still further ahead.

Be Organized
Who has time, right? Your house may not look like a magazine cover, but that's not what I mean. Keep a list of your elder's medications handy. Write down questions for the doctor as you think about them. Make a list of all the medical professionals (doctor, dentist, pharmacist etc.) for your elder. 

A sense of humour is invaluable. Today I sat with an agitated resident who has aphasia. Most of what she said made no sense, but at one point she said, "I'm sitting here, dumb."
I replied, "But Martha, we're sitting and chatting together." 
She made another unintelligible statement, but it contained the word "dumb" as she looked pointedly at me. 
I blinked. "Are you saying I'm dumb?" 
Her face brightened. "Yes!"
Well then...
We both burst into gales of laughter. 

Education, when related to your loved one and their disease, brings comfort and power. Learn as much as you can. If you can't attend seminars or workshops, look for online information. YouTube carries a wealth of information. The more you know, the better prepared you will feel.

You feel alone, but you aren't. Many are facing the same challenges, and there's unbelievable freedom in sharing your stories. Check your local societies (Alzheimer Society, Parkinsons Society etc.) for groups, or check online. Talking to others who understand will be an invaluable resource. And you know what? You can give that gift to others, too.

Next week: Christmas and Care Partner Stress


Thursday, 5 December 2019

Care Partner Wednesday--Frustrated, Anxious, Angry--Care Partner Stress is Real

A conversation over coffee

"I don't know what's wrong with me. I used to fall asleep easily. I'd hit the pillow and be gone. Each day is crazy busy and I can barely drag myself up the stairs. That hasn't changed, but now I get into bed, and it's like a switch goes off. I go from drowsy to wide awake and I lay there for hours." Cathy stared into her coffee cup as if looking for some answers.

Libby patted her hand and suggested, "Maybe it's menopause."

"What? I'm 32. Besides, there's more. I've lost a bunch of weight without even trying. I bit Brad's head off the other day and I don't remember the issue. I just know I felt intense anger. We seldom argue and he looked so surprised and hurt."

"Every couple has moments like that. Sometimes I want to shake Jerry."

"We're not usually like that. At least, I'm not. And the other day, I was in the department store buying cleaning products and I heard this song from when I was a teenager, and I started crying. Oh my gosh, it was so embarrassing. I pretended I was really interested in the floor cleaner. Am I going nuts?"

What is care partner stress?

Cathy isn't going nuts or having a breakdown. She has a job and a husband and two young kids, and recently she asked her mother to move in with them. Mom has early-stage dementia but it's progressing quickly and some days Cathy can't keep up with the changes she sees.

She suffers from care partner stress.

What is that? Doesn't everyone have stress in some form? How are care partners any different?

The difference is that Cathy had a job and a husband and two young children before she became a care partner for her mom. All of those roles brought her both joy and sometimes stress. With her mother's diagnosis came a new set of responsibilities. Care partners usually have full lives before they begin their new roles and they often balance many figurative plates in the air.

What are the signs?

Not unlike any signs of stress, you may experience a few or most of these symptoms. Stress can affect all parts of you--physically, of course, but also your emotional well-being, your spiritual life and your mental capacity.

  • overwhelming fatigue
  • depression
  • anxiety
  • withdrawal from friendships
  • anger and irritability
  • physical decline and new symptoms such as high blood pressure, diabetes and recurring illnesses. 
  • higher risk of heart disease
  • poor self-care (such as not making or keeping needed medical appointments)
  • changes in appetite and poor eating habits
  • weight loss or gain without trying
  • feelings of hopelessness
  • suicidal thoughts
  • lack of interest in previously enjoyed activities
  • beginning destructive behaviours such as drinking excessively 
  • headaches, body aches, digestive issues
  • no interest in sex
  • memory issues
Do you see yourself on that list? Listen to others caring for a loved one describing how it affects them.

If all of this sounds frighteningly familiar, look for next week's blog on how to cope with care partner stress.