Wednesday, 29 August 2018
I'm not good at the dripping tap.
Have you ever been cozied into your couch with a riveting book, until your attention is drawn to the kitchen?
You're already disturbed, so you get up to turn the darn thing off. You just get back to the couch when you hear
The reality hits you. The tap won't turn off completely, and the dripping won't cease until you replace it. If you don't have those skills, that might mean the cost of a plumber as well as a new tap. Your cozy evening is shattered, not only by the dripping but by the worries of the expense of the fix.
It may be that your care partner journey is plagued by a dripping tap. The same question over and over again. Or the same several questions cycling in a perfect circle where you can never find the end or the beginning or more importantly, a way out. There is no way to make it stop.
I confess, nothing wears me down more. I consider myself a patient person, but when that tap drips, it drives itself into my consciousness and I can't get anything done. My head is full of the questions and my answers, and I can't keep my focus on the task at hand. I realize I opened an email, but I've forgotten who it was for.
I've tried sitting with the person and giving them attention. They are insatiable.
I've tried reassuring. The questions are back in a few minutes.
I've tried distracting with activity. Only a few activities are acceptable, and even for those, I have to insist.
I've tried a volunteer visitor. They leave the volunteer to talk to me.
I've tried answering the questions. They never stop.
I've tried setting a boundary. "We've talked about this for 15 minutes, and I'm not talking about it any more. Let's talk about something else." This sometimes works, but it still monopolizes my time.
I've tried taking a bathroom break. That works, but there are limits as to how long I can hang out in there.
Here is what I have learned about myself and the dripping tap kind of situation:
I will deal with it and provide reassurance and give whatever comfort I can for as long as I can. However, I have limits. I've learned to identify when I've reached that limit. When I have, I must leave. For both our sakes.
If you are a care partner dealing with this kind of situation, you must build breaks into your day. Respite, friends, hired help--whatever it takes. Often a short break is enough, but you must have times when you are away. Get care for your elder and go for a walk, take a nap, go out with a friend or run some errands. You will come back refreshed and ready to care again. Know your limits and ensure it's possible to take a break before you reach the breaking point.
It's possible to fix a dripping tap. Not so with this kind of situation.
The only "fix" is how you handle it.
CLICK TO TWEET
Care Partner Wednesday--The Dripping Tap
Wednesday, 22 August 2018
I am on vacation.
For a care partner, vacation is both the most difficult and the most necessary of times.
"I get necessary, but why difficult?"
Because we are care partners. We are deeply immersed in the task at hand. We care beyond measure, and the task is huge and daunting. In spite of this, and the toll it takes on our bodies, minds and emotions, many care partners believe it's impossible to take even the briefest of vacations. "He won't let anyone care for him but me." "There are so many details. How could someone else possibly take over?" "I would worry the whole time. It's not worth it."
Here's the bottom line. If you don't take a break on occasion, you won't be able to stay the course. Or put another way, if you don't take a break, you will break.
Georgina had been Paul's sole care partner until the day he moved into care. In spite of the fact that they were close in age, as he was her husband, she'd cared for him with his advancing dementia with only minimal bathing help. Her children visited, but she felt it was her responsibility to care for their dad and she didn't invite a lot of help. When he moved into care, it was difficult for her to let go and let the care partners look after him, even though she loved them and thought they did an excellent job. An elder herself, she had multiple physical issues but continued to shoulder a burden that was no longer hers.
In the spring, she spoke of a summer family reunion. She wanted to go but didn't know how she could leave Paul. Each time the topic came up, I encouraged her to go. She needed to get away. Finally, she made the decision and left for four days out of town. Paul had settled nicely into our neighbourhood and was relaxed and happy. After a bowl of ice cream one afternoon, he stood up, turned and fell. His hip broke, and a week later, he died.
A sad story, to be sure. I wish it hadn't occurred while Georgina was on vacation. But the fact is, unless she had been standing beside him, she couldn't have prevented the fall. I was a few feet away, as was another care partner and a nutrition partner. We all came running, but none of us could prevent it. Life and death happen whether you are there or not. You need to prepare the best you can and leave.
Letting go of the reins requires organization, research, and ultimately, trust.
If your elder lives in care, this is easy. All the supports are already in place. Make sure those who are caring for them have contact information for you, and a person in town who can come quickly if a familiar face is needed in a crisis. Have you indicated if you would like them sent to the hospital in a crisis? Would you like a family friend to go with them or someone hired?
If you care for them at home, look at the supports you already have. Do you have someone coming in to shower and dress? Can you increase their hours or hire someone else through their organization? Are there friends who have said they are willing to help? Ask family to help. They may be able to at least visit for an hour, and could possibly do a lot more. If keeping them at home isn't possible, look at respite care. Many places who provide care also have some beds available for respite. Visit a few until you are comfortable. Check your insurance, as there may be provision for at least part of the cost.
Linked with the organization, research helps you find the best support possible while you are away. Because of who you are, they may never be good enough and you may never get over the feeling of guilt. Realize this about yourself and do it anyway. Look up what kind of supports are needed, visit them and decide what is the best option for you. If you start with a weekend retreat, you can try them out and perfect your care options for a longer trip. Talk to others who are on the same journey and get referrals. Each idea brings you a step closer to your much-needed break.
After you have found the best care possible for your elder, you need to go. Leave. Although you won't be able to keep your mind from turning back home every few minutes, resist the urge to call or contact those you have left in charge. If there is a problem, they will call you. Trust.
What about Georgina? Was her trust misplaced? No. What happened to Paul couldn't have been prevented. Realize that in spite of everything, the worst may happen. You can't prevent it.
Go. For your sake, for your elder's sake. Take a break.
CLICK TO TWEET
Car Partner Wednesday--The Care Partner's Vacation
Wednesday, 15 August 2018
Our neighbourhood had experienced three deaths in a week. If you don't work with us, you might think this is common and expected, but in fact, it's been months. Like blasts from a cannon, each was disturbing and unsettling, and one was entirely unexpected. We were reeling and needed a chance to regroup.
"Really? You work with people in their nineties and older. Surely death is a common and even welcome guest. You must know this is coming. It's woven into the fabric of what you do every day."
There are some aspects of truth there, but so much more. If you are doing caring right, if you are treating elders as they should be treated, if you are looking for quality of life, purpose and meaning every day, you form relationships. The elders are your friends. You applaud when they recover from an illness and rejoice when they enjoy an experience. You share yourself with them and laugh with them and receive from them. You go home at night still thinking of ways you might make their lives better. You problem solve and think creatively about what they might enjoy.
It's not all butterflies and unicorns. There are times, sometimes several times in a day, when you think, "If everyone could please stop talking to me, I might get one thing accomplished." You struggle for patience with their families who are sometimes unreasonable. You answer the same question until you want to scream, but instead, you smile.
These are your friends.
When your friends die, you feel like a piece of fabric that has been torn in two. You wrap the ragged edges around yourself, and you need to crawl away and process the fact that a part of you is missing. You need to grieve. Yesterday our team sat together, ate cupcakes and talked about our friends. We told stories that made us laugh--and cry. We struggled to grasp the reality that our family, our neighbourhood, was changed.
We were changed.
I am changed. I take with me the positive attitude of one, the gentle smile of another, and the sense of humour of the third. Pieces of them have become part of me.
I am blessed.
CLICK TO TWEET
Wednesday, 8 August 2018
She has a family; two teenagers and a twelve-year old, a husband who travels, so is not home for the day-to-day running of the house, and a mother who helps out with the kids. Mom is a young eighty who walks every day, reads the paper, is conversant in politics and plays a mean game of Scrabble. Mom still drives, so she comes and makes dinner a couple of nights a week when Janice is tied up with meetings at the office. It's busy, but it works.
Until the day it all falls apart. Mom steps off the sidewalk and misses the curb, falls and breaks her hip. She needs surgery to repair it, but as she is recovering, develops a heart arrhythmia. She can no longer drive and needs multiple medications. She becomes depressed, requiring more medication. Janice worries about her all the time, and wonders how she can look after her mother, her family and her job.
Janice has become a care partner.
Most of the family members I meet are far along in the care partner journey. They have moved their loved one into an apartment or life lease in our building, and many years later, down to the care sections. Or, the resident made the decision to move to a place where the care would be there when they needed it. Either way, it was a slow journey and family had time to learn their roles and adjust to what was needed. Not so with Janice. She became a care partner overnight, and is facing a lifestyle change, questions, fear, guilt...
If I had one piece of advice, this would be it: get help.
It's difficult to think clearly when it feels like your world is crumbling. This is a world Janice knows nothing about. None of her friends have dealt with this, as their parents are younger. She has no idea where to start. Here are a few suggestions:
1. Your first point of contact are the doctors, nurses and social workers at the hospital. Before they release mom, they will need to know that she has a place to recover where her needs can be met until she is healed. They may decide to send her to a rehab hospital, a place dedicated to getting her back
on her feet and moving. She will get daily physiotherapy and encouragement to get back as much of her function as possible. This also gives you several more weeks to plan for what is needed next. If this isn't possible, talk with the medical staff about what the next steps should be. Be sure to include mom in the conversation.
2. Ask, ask, ask. There may be supports available to you through government agencies, your insurance provider or other community services. Find out what help is available and how to access it. Medical staff at the hospital can help you with this, too.
3. Discover what Mom needs. Does she need an assistive device like a walker? Will she need a wheelchair for a period of time, and if so, could you rent it? Maybe you will need to think about buying a foldable wheelchair (called a transport chair) for when walking a longer distance is necessary. Will she need help getting in and out of the tub/shower? Can she put her socks on? Does her house have a lot of stairs that are going to be difficult? Make a list of what she needs, and another of what can be done to help.
4. Don't panic. It may be that some supports will need to be put in place for a period of time while she is healing, but this may not be the time for major permanent changes, such as moving. Make sure to get a proper assessment from your doctor and possibly the social worker at the hospital. What is she going to need for now, and what will be needed in the future? Again, include her in all these conversations as you work out together a plan of care.
5. Think ahead. It may be that Mom heals well from her fracture, the arrhythmia is controlled by medication and the depression passes. However, given her age, it is the time to have several conversations. The "at some point you will need to move, Mom, and where do you think you'd like to live?" conversation will be the next one. You may be surprised to discover she's already thought this one through. If you haven't done it already, you should have the "powers of attorney" conversation, so that everything is legally in place when you need it. And at some point, perhaps connected to the legal work, you should have the "if you were to have a medical 'event' requiring CPR, would you want it? What kind of end-of-life care would you like?" conversation. Timing is everything for each of these, but don't put them off too long.
Janice, or anyone who suddenly becomes a care partner, has to make multiple decisions quickly. It can be frightening, overwhelming and make you weary. I go back to my original statement. Get help.
Because...there's no shame in asking for help. Only wisdom.
CLICK TO TWEET
Care Partner Wednesday--Becoming a Care Partner Overnight
Wednesday, 1 August 2018
Today, I had to write an end-of-life notice for someone who is dear to me. I struggled, deleted, started over and re-wrote. This notice is an email we send when a resident has been declared end-of-life by their doctor. The purpose is to let people know, so they can visit and say good-bye. We tell a little about their life, perhaps include a touching anecdote and a few special pictures. Composing these emails usually isn't difficult for this writer, but today, I couldn't find the words.
What I wanted to say was, "When I grow up, I want to be like you."
I've talked about learning from elders. Sometimes I learn who I don't want to be. People who are demanding, manipulative, complaining and draining are obviously not my role models. I don't want to be the lady who uses her call bell 200 times in two weeks, the one who asks me the same question multiple times (she doesn't have dementia) or the one who says one thing to her family and another to me. Some people have little patience, no sense of humour and can be downright nasty.
I've learned from them.
Florence (not her real name) taught me a different lesson. She showed me the quiet grace of dealing with losses, such as the loss of her eyesight, with creativity and a sense of humour. When she couldn't read the songbook, she sang what she could from memory. When she couldn't see the puzzle book, she showed amazing skill at solving puzzles by knowing only the clue and the number of spaces. When she could no longer walk, she rode with grace.
Her attitude toward life is simple. If an activity is offered, it might be fun, so let's try it. Always positive, and encouraging, Florence was game for anything.
Florence knew that even at her advanced age, she could give. She became best friends with someone with an anxiety disorder. June's first response to an invitation was to say, "No." She was too tired, too sick, too whatever, to attend. Time alone in her room was never healthy for her, and Florence knew that. She would "call" on her by standing quietly at her door. In her gentle voice, she would say, "Are you coming?"
Minutes would pass, and Florence was still patiently standing. Waiting.
Finally, June would emerge, and the two of them would head to an activity.
"I am her eyes, but she is my courage," said June.
All her life, Florence made delicious bread. When she moved to Christie Gardens, she continued, and her whole floor would smell amazing as it baked. Blindness stole that from her, too. Last spring, when I was pondering what to give someone for their birthday who was 101 and couldn't see, I got an idea. Together, Florence and I made bread. She smelled the yeast and felt the silkiness of the dough when it rose. Here son came for lunch, and when we were ready to sing "Happy birthday," the bread came out of the oven, looking golden and smelling delicious. Florence beamed for the pictures, and then the loaf was cut and buttered for her friends to enjoy.
I want to be Florence when I grow up. Quiet but encouraging, positive and fun, gentle and giving. As I write this, I know I need to say good-bye and this hurts like crazy. I know it's time, and I hold my hands open to release her, through tears.
Thank you, Florence, for the gift of you.
CLICK TO TWEET
Care Partner Wednesday--When I Grow Up...