Friday, 22 November 2019
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.
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?
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
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.
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?
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!
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.
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
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Care Partner Wednesday--Feel Empowered With An Epic Medical Team
Wednesday, 6 November 2019
"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.
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Care Partner Wednesday--Sieze the Opportunity to Build Your Team