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.


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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.
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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. 

Laugh
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. 

Learn
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.

Connect
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

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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.









Friday, 22 November 2019

Care Partner Wednesday--Surprising, Little Known Ways To Find Your Tribe


I tucked the carefully crafted letter in backpacks and diaper bags. When I met the parents at the door to pick up their children from my daycare, I didn't say a word. In a few hours, the phone started to ring as my monumental decision reached its tentacles into the lives it would affect.

I closed the door on the daycare I operated for 15 years from my home. With faltering footsteps, I walked away from the children I loved and their parents who were my friends and embraced a new adventure. I struggled with fear on so many levels but by far the biggest challenge was leaving behind my tribe.

The parents who came to my door each morning and stayed and chatted when they picked up their kids and the children who lived firmly in my heart--they were my tribe. At my new job, I knew two people, and they were upper management and not the ones I would rub shoulders with. For the first several weeks, as kindly as the staff at the new job treated me, I missed my tribe.

Tribe

Community

People

Support Group

Whatever you call them, the group of people who call you friend, hold you up, encourage you on the hardest of days, laugh and cry with you and are there when you need them--they are your tribe. Each one may not fulfill all those functions and they may not know each other, but together they hold you together and without them, you falter.

This is especially true of care partners. So who belongs to your tribe?

Family
Not everyone has a supportive family and many members may be more helpful or able than others. Uncle Jim may be elderly himself and cousin Glenda may live too far away and your brother may be useless at anything like care, but give everyone an opportunity to do something. If they say no, don't take offence. That won't help anyone.

Friends and Neighbours
Asking takes courage and many times you don't have it in you, so try asking when the need isn't great.
"Janice, if I needed someone to pick up a few things at the store for me sometime, would you be willing?"
"Lorrie, would you ever be able to pick my kids up at school if I couldn't leave mom?"
"Tashi, you are so great with dad. Would you ever be able to visit with him for an hour or so to relieve me?"

This non-threatening way of asking keeps the door open for future opportunities. Keep a list of who you've asked for what.

Church and Other Organizations
Talk to your minister/pastor/leader and let them know the kind of needs you have. Ask them about others who may have similar needs. Is there a support group for those caring for elders? If not, maybe you could start one. Or if that's too challenging, talk to others who also care for an elder and look for connections.

Professional Disease-Specific Organizations
The Alzheimer Society, The Parkinson Society--just about every disease has a group. Most are well organized and helpful sources of information. People dealing with similar issues are easy to meet and there's a wealth of special supports such as Alzheimer's Dance Classes or Parkinson's Boxing. Google them and see what's out there.

You are the leader of the tribe, but it's up to you to find those people who can support you in many small ways. Each one holds an essential place in your tribe and holds the key to survival and even thriving as a care partner.

Find your tribe!

Surprising, Little Known Ways To Find Your Tribe


Thursday, 14 November 2019

Care Partner Wednesday--Feel Empowered With An Epic Medical Team


We sometimes play a game with a parachute. Everyone in a circle holds a loop attached to the colourful fabric and pulls to keep it tight. A ball in the centre rolls from side to side, sometimes bouncing if someone gets enthusiastic and suddenly pulls tight. If a player slacks off, the ball falls to the ground.

A fun game, this also illustrates how it takes a team to support an elder. Everyone needs to pull together.

Who is on your medical team?

Obviously your doctor; maybe a specialist or two. That's about it, right? You may have overlooked a few key players.

Doctors

The primary care physician plays a key role. They are the conductor to the orchestra of other specialists who might be needed and the gateway to care beyond their office doors. So here are a few questions to consider:
1) Do they understand the elderly, including the unique way drugs can react and interact in their bodies?
2) Are they open to investigating a problem, even if the patient is advanced in age? (You may not choose to do this, but the option should be there.)
3) Do they listen and really hear when you or your elder describes the problem? Do they ask perceptive questions?
4) Are they available in a reasonable time when you need them?

You may be spending significant time with this person and depending on them to direct care, Make sure you feel comfortable with the care you receive.

Various specialists may also share responsibility, depending on your elder's condition. You may wait weeks to see them and spend minutes with them, but their specific expertise can be invaluable. The results of any tests they order or recommendations they make will be sent back to your primary care physician.

Other medical support may include ophthalmologists (macular degeneration and glaucoma are common problems) hearing specialists, physiotherapists (especially important after falls) chiropractors or acupuncturists (for pain relief) and so on. Don't close your mind to any form of medical help which may improve quality of life. 

My dad had significant pain in his feet and legs and he still worked in a career which required him to stand most of the day. At the time, most of his peers considered acupuncture weird hocus pocus, but we had a relative who was both a doctor, a pharmacist and an acupuncturist. Dad went for a treatment and immediately received significant relief. A few more treatments followed, which helped tremendously, and he verbally espoused acupuncture for the rest of his days!

Pharmacists

Did you think of your local pharmacist? Chances are, you'll be visiting them often, and they can be a tremendous help. They can flag drugs which shouldn't be taken with other drugs--something your doctor may miss. They can recommend over-the-counter medications, and check them with the drugs that are being taken. They can tell you which brand of pain relief would work best. I speak as a pharmacist's daughter, but this person is a valuable resource for you.

Nurses, Personal Support Workers

You will encounter nurses in the doctor's office or during any hospital stay, but did you know that in Ontario, your elder may qualify for a wound care nurse to visit? Skin becomes thin and easily breaks down, especially if the person isn't active and experiences decreased blood flow. If a wound opens up, your doctor may decide it needs dressing changed on a regular basis by a wound care nurse. PSWs (personal support workers) are available for hire to provide private duty care, which could give you some respite.

Physiotherapists

Although they could be classified as "other medical support," I've put them by themselves because they provide an invaluable service to your elder. Gait assessment, maintaining walking, rehabilitation after a fracture--a qualified physio can help with all this and more. Keeping mobile is essential, and that's their goal in life.

Your medical team brings together the expertise to keep your elder as healthy as possible. Physical health affects quality of life and is obviously key. But what about emotional, mental and spiritual health? For that, you need your community, the third component of your team.

Next week: Your community team

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Care Partner Wednesday--Feel Empowered With An Epic Medical Team




Wednesday, 6 November 2019

Care Partner Wednesday--Seize the Opportunity to Build Your Team



"It takes a village to raise a child is an African proverb which means that an entire community of people must interact with children for those children to experience and grow in a safe and healthy environment. The villagers look out for the children."1

The concept of the community participating in the raising of children is integral to African culture but seems radical and a little invasive to us. We in North America didn't consider the idea until Hilary Clinton brought it to our attention in 1996 when she published her book of that name. An interesting concept but we love our silos and tend to close and lock our front doors to anyone offering to participate in our family life.

We aren't great at community. We espouse the idea, but when it comes down to it, we resist letting others in.

The concept reaches far beyond the raising of children. We need each other for all the frightening, overwhelming scary stuff life throws at us. We need each other, and this is never truer than for care partners. It takes a team to support an elder.

Who's on your team?

1. The primary caregiver

I would define this as the one person who makes most of the care decisions. There may be several siblings and they may discuss everything, but in the end, one sibling generally takes the lead. Perhaps a husband provides care and the children give input. Or maybe the elder is cared for by others in long-term care. One person usually emerges as the place where the buck stops.

Even if they aren't giving hands-on care, the primary caregiver carries a heavy burden. Decisions regarding care are often difficult and unclear. Is this course of treatment or that drug better than another?  Do the benefits outweigh the side effects? Dad starts to act in a way that's concerning. What should be the best response? Mom's emotions are all over the map. How to show compassion but keep things calmer? A wife starts to wander and a husband shouldn't be driving any more. Primary care partners face tough decisions and circumstances every day.

The primary care partner's biggest challenge is often feeling alone. Even if family members want to support, they can add to the burden through confrontation and endless discussion. Conversely, the primary care partner can become their own worst enemy by not acknowledging that they need a team. "I know my elder best and I can make the best decisions for them."

Glenda looked after her husband in their apartment. Although they had some supports in the form of occasional caregivers and housekeeping, she adamantly declared she knew best. He never left his bed and she struggled with his care. Their world shrunk as she refused to listen to advice. Eventually, the decision to move her husband to care came in spite of her, but to both their surprise, it opened a new world to them. He was put in a wheelchair and she could wheel him around. He benefitted from others who knew how to support his frail skin. It took some time, but eventually, Glenda allowed the team to support both her and her husband and their quality of life improved.

As the primary care partner, you play a key role. But without a team behind you, the pressures will overwhelm, and you will falter and burn out. There's no might or maybe--care partner stress is real and a killer. Don't say, "I should be stronger." Be wise and build your team.

Next week: The medical team.

1. https://en.wikipedia.org/wiki/It_takes_a_village

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Care Partner Wednesday--Sieze the Opportunity to Build Your Team

Wednesday, 16 October 2019

Care Partner Wednesday--Anxious To Powerful With Assistive Devices






Do you remember the bundle buggy?

A cart sitting on four wheels with a handle at the top. Used for shopping trips, usually pulled by an older person.

The bundle buggy received a facelift several years ago. It's now called a "trolley dolly" or a foldable shopping cart, or perhaps a "rolling bag cart." No longer just a metal frame, the outside is wrapped in funky colours of fabric. And the person pulling it? It could be male or female, often quite young, a city dweller who travels by public transit or perhaps an Uber. Yes, the bundle buggy definitely had an upgrade.

Except in my mind, it's still a bundle buggy, still for old ladies, and I refuse to use one...for now. It's a thing with me.

I'll probably be the same way about a walker.

Assistive devices have been around since the first caveman picked up a stick to help him manoeuvre uneven ground. Recent technology has improved them to such a degree that you may not be aware of what's available. They all maintain the same goal--to assist with independence, comfort, and safety as your needs change.

As our population ages and technology improves, this industry explodes with new options.

Mobility--Canes, Walkers, Wheelchairs

I'm not a big fan of canes, for many reasons.

  1. Someone who gets a walker or wheelchair is normally assessed by a qualified occupational therapist (unless it's passed down from Great Aunt Harriet, which is not a good idea.) However, a cane can be picked up at any drug store (or passed down from Great Aunt Harriet) and is not necessarily what is needed, the right height or safe.
  2. I have seen many canes with an absent or worn down rubber grip on the bottom. This renders it slippery and unsafe.
  3. If someone is not properly assessed for a cane, they don't know if that's the device they need. Many people who wobble on an unsteady gait and need a walker are still using their cane long after they should.
  4. I have also seen canes used as weapons in the hands of someone with dementia.
If you are going to get a cane, get a professional assessment and check in regularly to understand if your needs have changed.

Walkers and wheelchairs also need professional occupational therapist assessments. If you live in Ontario, this can be done through the government agency LHIN (formerly CCAC. ) A warning, though--this route can take a long time. A private OT can speed the process up tremendously.

Ontario also has a program to which you can apply for funding. Called ADP (assistive devices program) this pays a percentage of the cost. An OT would fill out the paperwork.

Wherever you live, check what financial help is available for assistive devices. Any defraying of cost can be significant.

Walkers provide stability and those with seats supply a place to rest. They can also be attached with a basket or satchel to hold items.

Wheelchairs are for those who can't walk, or can only walk with help. Transport wheelchairs fold and can be put in the trunk of a car or easily stored away. However, they aren't comfortable to sit in except for a short time. 

All parts of the body need to be measured for a wheelchair to fit correctly. Height, weight and other special needs will be considered by the OT as they assess the right kind of wheelchair. If the person is at all able to self-propel, a lighter chair with this kind of capability is available.

I shared my feelings on canes, so here is my non-professional input about wheelchairs. I think all wheelchairs for elders should have the capability to tilt. This means that through a simple mechanism in the back, the whole chair tips back, giving the person the ability to rest in their chair. Tilting also changes position, which is valuable for skin integrity when people can't shift around themselves. Even if it isn't needed at the time of purchase,  funding is only available every five years, and the chances of needs changing before that time are great. Get a tilt chair. (Sermon over.)

Bathrooms--grab bars, seats, shower chairs, special tubs, hand-held hoses


Bathrooms can be hazardous, but a few simple changes can make them more accessible and safer. Get a professional to install grab bars, as they will be able to find studs to ensure the bars are safe and able to bear the necessary weight. Raised toilet seats can be installed on regular seats to make getting up and down easier. Some have special arms on each side of the toilet can also make it possible to maintain independence while using the facilities.


Shower chairs are padded, waterproof chairs on locking wheels. Someone with limited mobility can be wheeled in the chair into an accessible shower and cleaned with a hand-held sprayer. Drying, even dressing can be accomplished on the same chair.

We've all seen the pictures of step-in tubs where you sit down and close the door. The tub fills with water and you enjoy a safe, whirlpool experience. Although an expensive option, this is a comfortable alternative for some.

Technology

This area is exploding with opportunities. Alexa sits on your counter, and not only plays your favourite music and trivia games with you but calls for help if you fall. Hearing aids are smaller and more efficient, and I've even heard about a tiny tracker that attaches to your device (or anything) and can find it for you if lost, through an app on your phone. Do you have any idea how many hearing aids would benefit from this? A bracelet alerts others when a wanderer attempts to leave the building. The possibilities are endless.

The challenge is to view all these as aides, devices to keep you as independent as possible, and not the trappings of aging. If that's an issue for you, I hear you. Let's support each other as we move into independent elderhood.

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CarePartner Wednesday--Anxious To Powerful With Assistive Devices

Wednesday, 9 October 2019

Care Partner Wednesday--Empower Your Later Years with Awesome Decisions Now



Margaret liked her stuff. She wasn't the least bit materialistic, but her sentimentality made it impossible to part with anything which had the slightest story attached to it. In her house, whole rooms were devoted to boxes of old pictures, which she planned to sort through someday, her mother's teacups, her deceased sister's treasures and furniture with a history. She loved to walk among it, touching this box and that chair and remembering.

When she had to leave her house, it took months to decide what she could part with, and in the end, the answer was, "not much." Her apartment in her retirement home was crammed to the ceiling with boxes and stacks of precious items. Even her bathroom cupboards were packed. She sat looking at it all and wondered what to do.

Then she fell. Twice. Her family sat her down and had a serious talk with her about moving to long-term care where she would get the care she needed and staff would be around to monitor her. "But what about all my things?" Her son leaned across the table, looked in her eyes and said, "Mom, what do you think will happen to all this when you die?" His words startled her, but she knew the answer. No one in her family cared about any of the items in the boxes. 

So this time, with her daughter's help, she relentlessly discarded. Or so she thought. She exhausted herself deciding, and her dreams were full of insecurity as she questioned herself. Once she discarded an item she could never get it back so each choice she made felt momentous.

She moved into one room. After moving, a small pathway down the middle remained for her to walk, and at least 25 boxes sat outside the door. Her daughter's red face dripped with sweat, and Margaret sat on the bed and cried. What should she do?

Planning for independence later in life starts many years earlier.

I learned this lesson when I became a widow at 53. My husband liked his stuff and collected many items. His stockpile of DVDs was epic. He filled countless binders with newspaper clippings. and kept every church bulletin. He loved books, all things musical--the list went on. It fell to me to decide what to keep, what to sell, what the children might like and what to throw out. It was a huge job which I attacked in layers. As I packed and sorted and tossed and made decisions, I thought to myself, "I never want my children to have to do this for me."

Clear the Clutter
Look around your home. Check out the cupboards, the drawers, the closets, the storage rooms. What do you have which you never use? Are there boxes and bins you haven't opened for years? 

Start with one room. Give yourself as much time as you need, but keep at it. When you think you are done, give it a few days and go back and see if there's anything else you can get rid of. Reward yourself if you find something. Then move on to the next room.

Margaret let her possessions possess her. They became so big that they affected her quality of life as she aged. Don't let that happen to you.

Look After You
Medical events happen, and some aren't preventable. As you age, your body doesn't function as well as it did in your twenties. That's not rocket science. But each day, determine to live the healthiest life you can. Make nutritious food choices, limit your portions, exercise and get enough sleep.
Participate in activities and pursue relationships which give you purpose and fulfil you. Life doesn't come with guarantees, but give yourself the best chance when you pursue physical, emotional and mental fitness.

Check Your Home
Falls bring disaster. We'll talk more about that next week. Check for any tripping hazards such as electrical cords or rugs. Scatter rugs should be removed as they have great potential to lift and cause a tumble.
Have someone install grab bars in your bathroom to make getting in and out of the tub easier. 
Look into what technology has to offer in terms of monitoring, so if you do fall you can quickly get help.

Ask For Help
Don't be stubborn. I'm preaching to myself here. If a task is becoming too difficult for you, ask for help. No one gives out awards for doing your housework into your eighties or lugging bags of groceries when it hurts your back. 

Independence is a process. Start today for a better, more independent life tomorrow.


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Care Partner Wednesday--EmpowerYour Later Years With Awesome Decisions Now

Wednesday, 2 October 2019

Care Partner Wednesday--The Good, The Bad and the Ugly of Independence



Independence. Toddlers throw tantrums for it, teenagers get drunk asserting it, we all crave it. We want to do what we want to do when we want to do it. We'll stay within the law (mostly) and societal boundaries (for the most part) but we crave the ability to make our own choices and decisions.

And that's a good thing.

Right?

It's no secret that as we age, our independence is threatened by our bodies. We don't see or hear as well, some of us don't move as easily, and sometimes our judgement is as impaired as our joints. We need help, and as much as it urks us to admit it, we can't do some of the things we did even ten years ago. Or we can, but the cost is high.

How do elders find their way?

Independence--The Good
The key to independence for elders is to find new pathways to former pleasures. Here are some examples:

Problem: You loved the independence of driving yourself everywhere. There's nothing like just hopping in the car (well, maybe more like hobbling than hopping, but you got there eventually) and going where you wanted to. You even gave other people rides. But lately, you realize your sight isn't as good and your reactions are slower. You're kind of dreading next year when you have to take your driver's test again.

Solution:You take cabs. It seems like a lot of money, but when you add up gas, the cost of your car and insurance, you're ahead. Or, you impress the heck out of your grandchildren by learning to take Uber. You still have your independence, your stress levels are going down and it works out cheaper in the long run.

Problem:You love to garden, but your back protests after a few minutes of weeding. Pruning, even light digging is okay, but weeding sends your back into spasm.

Solution: Hire a neighbourhood kid to weed your garden and save yourself for the fun stuff like planting and picking.

Problem: You love big family dinners, but last year the shopping, planning and cooking for Thanksgiving almost killed you. You have always been the host and you are loath to give it up, but you know the time has come.

Solution: Approach your family, telling them you'd still like to be hostess, but the work of preparing the meal is too much for you. Accept however they want to do it--divvy up the tasks, or have someone take on the job or even (gasp) order in. You do the little fun things you always enjoyed like folding the napkins fancy and making place holders.

Independence--The Bad
When is independence bad? When it's time to change, to find a creative solution, to look for new pathways, and you don't.

  • When you drive that car, even though you know you've had a few close calls because you can't bear to give it up. 
  • When you need a day to recover from doing the housework, but you don't get help because you love to hear your friends say, "And she does all her own housework--at her age."
  • When you keep working long past retirement age, even though every day is a struggle and your doctor has recommended you stop.
  • When you're using the furniture to get around the house, holding on to chairs and couches for balance, but you won't get a walker because they're for old people.
The difference between the good and the bad is often a matter of timing. And wisdom. The ability to recognize when things need to change and the wisdom to make those changes and find the pathways to new solutions--that's the good. The bad is not doing it.

Independence--The Ugly
The bad quickly slips into the ugly when the consequences of poor choices rush to meet us. 
  • A car accident that was your fault
  • a fall resulting in a hip fracture because you were trying to vacuum and tripped over the cord.
  • a heart attack because you kept pushing yourself to go to work when you no longer needed to.
The ugly has far-reaching consequences, but most importantly, it can affect your quality of life.


Before the bad becomes the ugly, why not make some wise choices and look for some new and creative ways to live your best, most independent life?

Thursday, 19 September 2019

Care Partner Wednesday--Do your Doctor's Manners Make You Angry?


Melanie shifted in the uncomfortable, straight-backed chair and glanced at her watch. It hadn't moved since the last time she looked, and compulsively staring at it wasn't doing a thing. Mom had mercifully fallen asleep in the chair beside her after almost an hour of meaningless chatter, pacing and protests loud enough that everyone in the doctor's waiting room heard them.

Studying the faces around her, Melanie tried to remember which ones had been there when they came in and which were new. Where were they in the queue? If Mom woke again before the receptionist called their names, Melanie knew there would be a scene. Correction. Another scene. Mom's restlessness spilled over at the half-hour mark and it had taken one of her pills and some chocolate to settle her down. If it happened again, she had no more tricks in her arsenal.

"Davidson." Melanie almost didn't believe it and sat for another second before scrambling to gather her things and her mother and follow the nurse into the office. Mom, befuddled and grumpy at being wakened, wasn't sure of her surroundings and protested at being moved. Melanie managed to herd her into the inner examining room, only to cringe at Mom's loud declaration, "I need to go to the bathroom." The nurse gave her a look and said, "Down the end of the hall. You can leave your things here."

Throughout the process of getting Mom down to the bathroom and helping her, Melanie's heart raced. What if, after all this wait, the doctor came to the room and they weren't there. Would they lose their chance?

She needn't have worried. Even with the bathroom trip, it was another 15 minutes before he showed up in the examining room.

A cardiac specialist, she'd never met this doctor before, but rather than introducing himself or even looking at her or Mom, his entire attention was on the chart. "Shortness of breath, some edema in the legs, irregular heartbeat. Has she ever had a Holter monitor?"

Melanie knew he was asking her a question and she should answer, but she didn't have a clue what he was talking about. She looked at him blankly. "I'm not sure what you mean."

His patronizing tone set her teeth on edge. "A Holter Monitor. A device which is worn for a day or two and it collects information about the heart which we analyze. Obviously not. I'll order it."

He approached Mom without talking to her and proceeded to listen to her heart and take her blood pressure, writing numbers on the chart. Miraculously, Mom didn't protest, probably because he was wearing a lab coat and she was of a generation who held the medical community in high regard. When the machine squeezed her arm she said, "It hurts." He ignored her.

"Definitely cardiac issues. I'll order the Holter. Make an appointment for a month from now so I can review the results."

Melanie opened her mouth to ask one of the many questions that lay stacked in her brain, but the opportunity had passed. She watched his back retreat from the office.
                                                                             ---#---

This fictional worst-case scenario illustrates many of the issues that drive us nuts when visiting the doctor, which is a frequent occurrence for anyone supporting an elder.


  • Long waits before seeing the doctor. I recognize emergencies happen and I would consider a wait under 20 minutes reasonable. But beyond that, barring an emergency, shows poor planning and lack of consideration for the patients.
  • A doctor whose manner is arrogant.
  • If the doctor focuses most or all of their conversations on the care partner without addressing their patient directly, that's unacceptable.
  • Basic manners apply. Introduce yourself, make eye contact, smile.
  • Don't speak in a patronizing tone. Ever.
  • Ask permission and explain before even the simplest procedure.
  • Don't talk as if the patient isn't there.
  • Welcome questions and build time into each appointment for them.
  • When the appointment is over, excuse yourself
Other points I would add:
Be available in a reasonable time when an appointment is needed.
Phone to schedule a follow-up appointment when results are in.
Be supportive and have information available related to the disease.
Watch your tone of voice and manner. Acknowledge how difficult this journey can be for both the care partner and the elder, and don't add to the pain.



When visiting a specialist, the bottom line is that often you have little choice who you see. You are referred, appointments may take long to schedule, and you take what you get. Many wonderful specialists are also people who see you for more than their specialty.  Others don't.

But if your elder's GP has some of the above characteristics, maybe it's time to consider changing. Caring is a long-term relationship and your medical support is an important factor, but not the only one.

If your doctor's manners make you angry, is he/she the right doctor for you?

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Care Partner Wednesday--Do Your Doctor's Manners Make You Angry?

Wednesday, 11 September 2019

Care Partner Wednesday-After A Frightening Diagnosis Ask These 5 Powerful Questions



Bill and I and the doctor were crowded into a tiny examination room, peering at the computer screen. A week ago he'd had a serious event which brought him to the emergency room. His cardiologist was there that evening, and did multiple tests. We stared at the screen where the results were displayed.

"Idiopathic Cardiac Myopathy." Finally this series of symptoms, which we knew were heart related, had a name.

Kindly, he explained that idiopathic meant they had no idea why Bill developed this. "It means the medical profession are idiots," the doctor quipped. Cardiac meant it involved his heart, which we  knew. But the doctor pointed to the computer screen and explained how Bill's heart was big and floppy and not functioning as a heart should. That was why his elbows and knees were turning black, his ankles were double their normal size, and Bill was short of breath.

Obviously, it wasn't good news. But we felt an incredible relief. This thing had a name.

As a care partner, you will quickly learn that many hours are spent in doctor's offices. Especially with your GP, what are the questions you need to ask?

1. Diagnosis--what is the name? With a proper diagnosis, you can do your own research into all aspects of the disease. Ask which are the most reliable sources for finding information. Are there support groups or societies for that disease which you could access? He might have pamphlets to get you started. You know, I'm sure, that not every internet site is a reliable source of information. Organizations formed around a disease, such as the Alzheimer Society, are a great place to start to look for both information and support. Ask your doctor where to start.

2. Prognosis--No doctor has a crystal ball, and most families would love to look into one. But he can tell you what to expect in the next days or years. Most diseases have an early, middle and late stage. Ask him what each of these looks like, how long they generally last and what kind of treatments are given. Take notes, but know that you can also find more information online.

3. Treatment--Focus on the stage of the disease where you loved one is living. What kinds of medications are given at this stage, what are the side effects and what benefits should you expect to see. Is there anything you should know about administering the medication? Timing is vital in the case of some medications, and others need to be taken whole and can't be crushed.

What other non-medical interventions are important? Exercise is often key, but how much and what kind? What other kind of therapies would benefit? My niece attends a Parkinson's boxing class and loves it, and it helps her with balance and strength and coordination. She attends a choir with the same group, and loves it less, but it strengthens her voice, which is always an issue in her disease. Your doctor may not know all the resources available, but it's a place to start.

4. Specialists--Your GP is probably your primary care physician. However, your loved one may need several specialists, depending on other conditions and the severity of their condition. Ask about this, and at what point will they enter the picture.

Something to consider: Your doctor and specialists should be in a close geographic proximity and have privileges at the same hospital. We learned this the hard way. Bill had a GP in downtown Toronto because it was handy for him to visit her immediately after work. For many years this worked well, but when he got sicker and needed a cardiologist and other specialized treatments, they were in Mississauga where we lived. Because of the distance, the doctors didn't talk to each other, and his care suffered. When we tried to get a GP at our local hospital no one was accepting patients. Thankfully, a friend asked a favour of her doctor and he took him on, but we had an anxious several weeks trying to work out the details.

5. Heredity--Should other members of the family be tested for this disease? Does it run in families? As scary as the answer might be, this is vital information.

Have your questions listed, and prioritize them as there may not be time for all of them. Remember, this won't be your only visit, so some questions could be deferred while others will occur to you later. Keep a running list.

Your doctor is part of the team caring for your loved one. Make sure your relationship gives you the freedom to ask all the questions you need answers to.

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Care Partner Wednesday--After A Frightening Diagnosis, Ask These 5 Powerful Questions

Wednesday, 4 September 2019

Care Partner Wednesday--Do You Have The Right Doctor?


Older people's bodies aren't the same as younger people's.

Duh. Am I a master of stating the obvious? But there's more to it than you might realize. And the implications for you and your elder might be something you haven't considered.

What are the Differences?

By no means a comprehensive list, here are a few of the implications of aging:

  1. Older people are more sensitive to temperature changes.
  2. They are less able to cope with the side effects of drugs because their kidney and liver function (the ability of their body to remove the drugs from their systems) are less efficient.
  3. Their bones become less dense. 
  4. Their night vision is poorer and their reactions slower, and they cope with dry eyes.
  5. They tend to not hear high pitched sounds as well.
  6. Some people have issues with constipation, diarrhea, and incontinence.
  7. Their immune system is less efficient, making them more prone to infections.
  8. Many serious medical issues, such as heart attacks, depression, and thyroid issues present differently than in younger people and are easily misdiagnosed by a medical professional not familiar with the elderly population.
Should you consider a different doctor?

Changing doctors can be a difficult decision, and not one considered lightly. In some communities, finding any doctor to take on a new patient is a challenge. Why would you contemplate such a move?
Here are a few questions to evaluate:

1. Does your present doctor serve a significant aging population and understand the differences?

2. When you take your elder to their GP, do they see one doctor or are their several physicians and you may get any one of them?

3. Are you in an area where a geriatrician is available, and would you be able to get a referral to them?

4. Are you comfortable with wait times in the office and the level of respect given your elder when they visit the doctor? (We'll be dealing with this in another blog post.)


5. How would your elder respond to the suggestion of changing doctors? If the reasons were explained, would they be open to it?

When you weigh all the options, changing doctors might not be the best option. Or it might be the wisest move you could make. 

Only you and your elder know the answer.

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Care Partner Wednesday--Do You Have The Right Doctor?

Wednesday, 21 August 2019

Care Partner Wednesday--Three Practical Reasons Which Inspire Me To Deny Choice



Offering choice to elders presents many problems. Is it worth it? You decide.

Choice is expensive

In our dining room at lunch there are two choices of soup, several options of main course, including one bland and one vegetarian and a whole cart full of desserts. Don't like the soup options? We can make you some of the clear chicken broth we always have on hand. None of the main entrees appeal to you? How about one of many varieties of sandwiches? Or perhaps we could make you an omelet? Cheese or plain? Nothing on the dessert cart looks good? How about a scoop of one of the several kinds of ice cream in the freezer?

I realize we are unusual and there wouldn't be all those options for those caring for someone at home, but the bottom line remains--choice is expensive. Even to offer a few choices in the comfort of your home, you need to have cans of soup available, a variety of sandwich fixings and perhaps some frozen entrees. It costs to offer choice and I don't mean just money. It takes creativity, thought and planning, too. What care partner has that kind of time?


Choice takes time

Have you ever set out a few sets of clothes and waited for your loved one to choose? Or asked them if they would like this or that activity? Sometimes the effort can be painstaking and a little impatient man is jumping up and down in your head. Or they say they don't care until you make the choice and it becomes evident a few minutes later they did care and you made the wrong choice. Or have you allowed them to choose independence over your help and watched as they tried to button their shirt or put on a sweater?
Choice can take gobs and heaps of time.

Choice sometimes isn't safe

Myrtle is confined to a wheelchair which she propels herself. Because gardens nourish her soul, she wheels herself out the door and tries to make her way to a community garden down the road. All she wants to do is sit there and take in the beauty, but the pavement is uneven and a few times she's gotten stuck. She hasn't tumbled over yet, but it's just a matter of time. Always independent and a loner, Myrtle doesn't want company on her garden tours. But all kinds of hazards await her.


John has dementia, and sometimes goes out the door looking for his childhood home. He's even gotten in a cab and given the driver the street address. Of course, his care partner feels terror at the hazards of this, so puts locks and alarms on the door. John began banging on the door when it won't open for him or sometimes sitting in his easy chair, staring blankly at it. When his care partner takes him out, he's uncooperative, so it doesn't happen often.

It seems obvious, doesn't it? Offering choice is a slippery slope which makes a care partner's life full of anxiety. Why would anyone do it?



Choice is a basic human right

That's why.

I'm on vacation right now and when I go home on Saturday I know my fridge contains a container of Greek yogurt and some pickles. No part of me will want to hop in the car and get groceries but having choice for breakfast the next morning will force me to get moving. Or maybe I'll be so exhausted I'll have Greek yogurt for breakfast and pick up groceries after church.

I have a choice.

Everything I do in my day allows me choice. Sometimes I make bad choices and need to live with the results, but they are my choices. I have the freedom to make them.

Unless I'm elderly enough to need help. Or have dementia.

No.

I hope this tongue-in-cheek look at choice helps you realize how important it remains for everyone at every stage in life. Choice should never be optional. The only option remains the creative ways we offer it.

Our cupboards and fridges can be full of options. Don't buy ten cans of a favourite soup because favourites change and you may be left with something no one will eat. Buy a healthy variety and offer it daily. Activites like dressing and care will take as much time as they take because the gift of independence takes time. Look for creative ways to get Myrtle to the garden and John for outings that satisfy his needs. Get help if needed, but make it happen.

Choice isn't voluntary. It must be an option for all.

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Care Partner Wednesday--Three Practical Reasons Which Inspire Me To Deny Choice

Wednesday, 14 August 2019

Care Partner Wednesday--Powerless Elders Devastated by Lack of Choice



Do you ever feel like life's out of control? Situations are spiralling and you have no choice, or perhaps no good choice?

One morning, I faced time pressure to get out the door and make the train. My inner clock ticked and I knew as I blew my hair dry that less than 10 minutes remained. At that moment, my puppy, noticing the enticing dangling of the toilet paper on the roll, grabbed it in his mouth and ran. In a few seconds, my living room and kitchen were wrapped like a mummy. With a frustrated huff, I retrieved as much as I could, threw out the rest and returned to my hair.

He did it again.

He responds well to loud noises, and normally I would clap but with my blow dryer in one hand and my brush in the other, I had no free hands, so I brought the brush down hard on the sink. To my horror, a large portion of the corner of the sink broke off and shattered into a million pieces.

My choices at that point were, replace it or live with "ugly sink" for a period of time. Sink replacement wasn't in the budget, at least not until the day a few months later when a flood on the floor indicated a pipe had broken. I decided I could live with "ugly sink" but I couldn't function with no sink.

No choice.

Then there was the sewer backup in my basement. After months of negotiations, the insurance company hired a contractor and the work began. And abruptly ended. With dust and materials scattered over my basement, I phoned to find out the holdup.

Mould. Four tiny spots, which weren't anywhere near the flooding, held me captive. Until I did an expensive cleanup and environmental assessment, nothing more would happen in my basement.

No choice. It feels like tight jeans. Restrictive, uncomfortable and kind of bleak. It rankled me and made me angry. I wanted to grab a government official by the lapels and shake them.

Is this how our elders feel? Mobility changes, care needs change, housing decisions are made for them and their independence is stripped away. Some watch helplessly and others look for a set of lapels.

We who provide care are such loving, helpful people. We want the best for our loved ones. But sometimes, we strip them of choices in trying to help. We make decisions which, given time and opportunity, they could make.

Honouring elder's choices is the essence of person-directed care.



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Care Partner Wednesday--Powerless Elders Devastated by Lack of Choice