Wednesday, 22 February 2017

Care Partner Wednesday--The Sudden Care Partner

Once upon a time, many years ago, you had an uncomfortable conversation with your mom.

“Will you be my power of attorney?” she said. “Your brother isn’t into that kind of thing and your sister lives out of town.”

Talking about things like this took you far outside your comfort zone, so you made a goofy joke about how you might handle that kind of power. In the end, you signed the papers and forgot about it.

Until today.

Today, you got a call from the hospital, saying your mother had fallen and fractured her hip. She was facing surgery and then rehab, and then they would discuss if she could live independently any more.

Or, your mother’s neighbour phones to tell you that she was lost in her own neighbourhood, and all the signs you had been ignoring or calling stress are suddenly frighteningly real.

You are a sudden care partner, and you have no idea what to do next.

1.     Provide reassurance, even if you don’t feel it yourself.

No matter how freaked out you are, the elder you love is probably struggling more. Remind her that you are here for her, that you will figure this out together, and that you love her. Be honest. “I don’t have all the answers, Mom, but I will find them, and we will come up with solutions we both think are best. We are partners together in this.” You may have to repeat this message over and over.

2.     Spend a few minutes in their shoes.  

Think about all the losses that your elder is experiencing now, and those they face in the near future. Health, independence, perhaps the home and treasures they love. The world may seem to be a bleak and frightening place for them right now. Understanding will breed the compassion you will need for this journey.

3.     Ask questions, keep notes.

You will probably be travelling on a steep learning curve for a while. When you are feeling panicked, it’s easy to forget who said what, or what they said. Write down the name, date and comments of every valid expert you talk to.

4.     Develop discernment.

As you gather information, you will begin to see discrepancies. Some medical professionals aren’t well versed in the care of the elderly. Some friends have experiences that differ from yours. Some of what you read disagrees with other articles. As time passes, you will find the kind of care and advice that resonates with you and your elder. You may be forced into making some decisions quickly, but whenever you can, hold back until you have the information you are comfortable with.

5.     Get support.

There are great resources available. The Heart and Stroke Foundation, The Alzheimer Society, National Parkinson’s Foundation—what ever you are dealing with, there are tremendous resources to help you. Use them. You may think, “I don’t have time to go to meetings.” The truth is, talking to others facing similar challenges will be a tremendous help to you. Being a care partner can be a solitary and isolating journey, and you will benefit from talking to others.

6.     Look after you.

I’m sure you’re thinking, “I don’t have time for that either.” The intensity of the first few days as a sudden care partner can be overwhelming.  Your elder isn’t the only demand on your time. You may have a job, a family and other obligations, and life may seem like a huge balancing act. Take time to replenish yourself in small ways. Read a book, have a hot bath, talk to a friend, sleep. If you don’t look after you, you will get sick, and not be able to be there for your elder.

Sudden care partner, it will get better. Take a breath, hold a hand and go forward. You can do this!


Wednesday, 15 February 2017

Care Partner Wednesday--When Your Valentine Needs Care

People don't age at the same rate.

That's not rocket science, right? But what if they are married? One usually begins caring for the other. Years may pass, but eventually a day comes when one needs to move to a place where they can get more care.

How do couples survive?

I've observed many over the years, and could certainly write about it, but it seemed wiser to go to the source. Here are the words of those who are living it today.

"Take a deep breath before you visit. I think to myself, 'What burden should I lay down before I go? What can I talk about and what would be upsetting? It helps me to get grounded and our visits to be more satisfying."

"Don't be a helicopter wife, swooping in with all kinds of changes and suggestions. I am his wife, after all, and I was his caregiver for many years. I should know best, right? It's so tempting to fuss about small things that only matter to me. I've learned that I have to let go of some things. When I do, I realize that they don't matter much, anyway."

"Think about when you visit. My husband isn't a morning person any more. I used to go visit after breakfast, and I'd be so frustrated to find him still in bed. I asked why he wasn't up, and they told me they were letting him sleep because he'd said he wanted to. I couldn't argue with that. If the care partners can follow his rhythms, so can I."

"Take time for yourself. The first time I gave myself permission to go away for a few days, I felt guilty, and every time I told someone, I felt like I had to explain myself. I wasted that whole first trip worrying about him. When I came back, he was glad to see me, but didn't realize I'd been gone. Now I plan regular times away to nourish me. When I come back, I am a better, more patient wife."

"Learn that disappointments are okay. I once planned an outing for us, thinking it would be special and meaningful to him. It wasn't. He was bored and kept asking when we could go. However, there's been times when things have turned out beautifully, and we've both had fun. I've learned to still plan, but to let go of expectations."

"I made friends with her care partners. I got to know them and things about their lives. I also told them things about my wife that they didn't know. They became my friends, and when my friends were caring for my wife, I felt better about everything."

"One of my favourite things to do is to look at old pictures together. Sometimes, my husband remembers events of long ago. Those times are magical. Other times, he looks at pictures of himself and thinks it is our son. Still, there's something about those old pictures. Those are our history, and the experiences are a common bond."

Watching someone you love struggle with disease and decline is difficult, and puts special pressures on a marriage. I've seen poignant examples of love, but none stays with me like the one several years ago with Howard and Jan.

They had been married for over 60 years when Jan moved into the care sections with dementia. Howard came every day and took her for walks in the garden or had a meal with her. One of his favourite activities was to read to her the letters she had written to him when he was at war many years ago. He had saved them all, and he would make remarks about the people or events mentioned . For the most part, Jan didn't remember, but still enjoyed hearing her words read by the man she loved. One of my latest memories of them is of Howard coaxing the failing Jan to eat tiny spoonfuls of mashed potatoes.

For better or for worse. In sickness and in health. These vows are being lived out every day by husbands and wives who are also care partners.

Care Partner Wednesday--When Your Valentine Needs Care

Wednesday, 8 February 2017

Care Partner Wednesday--The Difficult Decision to Move

Yesterday, an ice storm pounded our area. Freezing rain and wind swirled in the streets outside, and the bushes near the window became coated with ice.

“Aren’t they pretty?” said a resident as she walked by.

Yeah. Pretty. From the inside.

When 4:00 o’clock came, I checked the window again, frowning. It wasn’t letting up, and I had to go out and face it. As soon as I exited the building, a blast of freezing rain and wind whipped around me. I dreaded the incline that led to the bus stop, but an angel had salted it, and I made it to the top without incident. As soon as I turned the corner to head to the bus shelter, though, I was met with sheer ice. A strip of frozen grass gave me enough traction to creep to the outside of the shelter, and I stepped on a tiny patch of snow to bring me closer, but that as far as I could get. The path from my perch on the snow to the inside of the shelter was icy and treacherous.

The people inside the shelter must have wondered about the crazy lady who chose to stand outside  in the bitter wind and freezing rain. My breath came in ragged gasps. There was no choosing involved—I couldn’t move. What if the bus came and I couldn’t get on? Each time I tried to take a tentative step forward, my foot slipped.

Rescue came in the form of my friend and co-worker, Mark. He arrived in the shelter and I frantically waved him over to help. He offered me an arm and together we took the slippery few steps to the inside of the bus shelter. “Just another day in the life of Superman,” he quipped. Indeed.

Elders who need to move to an area where they can get more care experience the same panic. They are perched on their patch of snow—all that is familiar to them. We—family, friends, care partners, medical professionals—are asking them to step into the slippery unknown. They resist, experience terror, change their minds and refuse. How can we be that arm extended that leads them to safety?

1.     Understand. I was genuinely terrified on that patch of snow. I couldn’t see a way out, and there was no good outcome that I could discern. Even though it can be frustrating to the care partner who is trying to make the move happen, understand the terror this kind of change can bring to some elders.

2.     Talk. A lot. Listen. A lot. Answer questions. Over and over again. Any life change is a process, and the elder needs to work it through in their mind first. If there is dementia, you may have the same conversation several times a day. This may happen even if no dementia is present. Give the elder the gift of patience as you explain again and again.

3.     Just do it. There will come a point where a decision will have to be made, and your elder may not be willing to make it. Perhaps their physical needs have come to a crisis point, or maybe the perfect room is being offered and you have just a day to accept. For whatever reason, the decision often comes down to the care partner, and it may make you unpopular for a period of time. Make the best decision you can, and stick with it.

4.     Familiar is better. Whether it’s a room or an apartment you are setting up, do your best to choose items that make it familiar and “homey” in the new place. Your elder may be able to help with these decisions, and it may be therapeutic to do so. Or, you may have to make all the decisions yourself. Look around where they live now, and make a list of treasured items that will help it feel like home. Be aware of space restrictions, but look for pictures, perhaps a favourite chair and other items that will increase the comfort level.

5.     Support. Most transitions like this take months to complete. After the initial move, there may be weeks where your elder is unhappy. Things aren’t as they used to be, and the reality of failing health and abilities may colour every interaction for a while. Your support, and again your patience, is crucial throughout this period.

However, you may be surprised. I have seen it repeatedly that elders who have been barely coping independently, blossom when they feel the support of their care needs being met. There is still a transition time, but it’s shorter than you could ever imagine. It’s as if they had been holding their breath, trying to cope, and this new living arrangement allows them to let out that pent up breath and relax.

Or, they are perching precariously on a patch of snow, and you offer an arm.