Wednesday, 21 October 2015

Care Partner Wednesday--When A Crisis Changes Everything

I was at work, and my husband, a victim of cardiac myopathy (enlarged, inefficient heart) was at home on short-term disability. It had been that way for several months, with several interruptions for hospitalisations. Since he had gone on disability, we had been looking for the new normal. We hadn't found it yet.

In the afternoon, I received a call from the visiting nurse who made daily visits to dress the wounds on his elbows and legs because his skin was breaking down without proper blood flow. Her voice sounded close to panic.

"Mrs. Peachman, your husband is on the brink of cardiac arrest, but I couldn't convince him to go to the hospital. He all but threw me out of the house."

I blinked in shock, having no idea what to do next. I assured her I would handle the situation.

After a quick prayer, I phoned my daughter, told her the situation and asked her to meet me at the train station. She had a two-month-old baby, and I thought the presence of the baby would help soften what I had to do.

When we arrived at the house, my husband was in the basement in his easy chair (his usual hangout.) His ankles were grossly swollen to the knee, and pills lay all over the carpet around him. "Oh, hi!" he said with pleasure at seeing me home early. My daughter and the baby followed, and he was delighted.

"I got a call from the nurse. We have to go to the hospital. There is no choice." All pleasure disappeared, but I was right, and the presence of my daughter and the baby tempered his reactions. Slowly, painfully, we got him up the stairs and into the car. He'd had so many hospital stays that no part of him wanted to go back. I was not the forceful one in our relationship, and that was one of the hardest days of my life. As it turned out, he never came home from that hospital stay.

The next few weeks were gruelling. I worked all day, went to the hospital at night and then came home. (We lived in a different city from where I worked and where the hospital was.) I'd get home about 10:00 at night, and be up at 5:00 am to do it all again. Sometimes, my kids would meet me downtown and drive me home, and sometimes I took transit. Every day was a marathon.

How does the care partner look after him/herself in crisis? There is no easy answer. 

I did a few things right and a few things wrong, but here are my suggestions:

1. Get help. A crisis can feel isolating, but it doesn't have to be. You have friends and family who support you and care about you. Call them. If ever there was a time to garner all the troops, this is it.

I did this right. My family knew immediately, and after all, it was their dad, so they were there whenever they could be. The situation was critical, and as it turned out, the last days of his life, so it wasn't actual relief for me. I was there as well. But their presence was an incredible support. I also had a few key friends who kept in touch with both me and everyone else. I knew there was a group of people praying for us, and willing to help in any way, and it was a huge support. My boss and others at work would have done anything for me, and that held me up. They listened. They let me cry. They gave me space. 

2. Look at options. All things might be possible. I worked until the last day of my husband's life. The Friday they called us in the middle of the night to say they were turning off the machines, was the only day I missed until my compassionate leave after he died. Of course, I didn't know the end of the story. I didn't know this was the end, or how many days it would go on. What I did know, quite clearly, was that I couldn't sustain this pace forever. My friend told me that, and I answered her, "What option do I have?" At the time, I felt there were no options, because I presumed I knew what the answer would be if I went to human resources and asked for some time off. I didn't ask, and I should have. Looking back, they probably would have worked something out for me. I should have at least asked.

3. Savour every moment. Does that sound weird? Here's what I'm saying. As horrible as the situation was, it was my last days with him. During the first week and weekend, he was conscious, and we had some critical conversations. I didn't know it was the end, and I didn't think he did either, but as he initiated the conversations, perhaps he suspected more than he let on. We talked. I shared with him a scrapbook I had made of emails we were receiving from people who were praying. We played a game where I slipped ice chips in the holes in his oxygen mask and he caught them in his mouth. I shared with him my dream to be a writer. He assured me I would. 

I look back on those moments now as an incredible gift that no one can take away. I wasn't making a conscious choice (I'm not that smart) but I believe the prayers of those who cared for us both were guiding me. I am so thankful.

Crisis changes everything. On rare occasions, things go back to the way they were. Sometimes, the crisis establishes a new normal. 

Inevitably,  crisis changes the care partner. 

Wednesday, 7 October 2015

Care Partner Wednesday--Do you speak dementia?

Imagine you are in grade seven or eight. At school, you are at the top of the heap.
You have worked your way up from frightening Kindergarten days to the confidence and coolness 
of the oldest kids. In reality, you are probably far from confident, but on your home turf 
and with your friends, you exude it. 
You know stuff. You definitely know a lot more stuff than your parents.

Your school has this relationship with a seniors' residence. When you were a little kid in grades one and two, you used to go over there, and it was okay. You sang with your classmates and showed your drawings and got fed juice and really tasty cookies. Then you all trooped back to school following your teacher like a family of ducklings.

But now...Now you are older, and the school expects you to talk to the seniors and actually do things with them. In the place in your heart that you won't reveal to anyone but yourself, you admit that you are scared. Terrified, actually. Some of them have dementia and you don't know what to say to them. You're afraid of what they might say. Or do.

In a few weeks, we are hosting just such a group of kids. The school within walking distance has a long standing relationship with us. Over the years, we've learned a few things. We are beginning with an orientation, mostly with the kids by themselves, to set some ground rules and teach them the basics of walkers, wheelchairs dementia and communication. For some, it will come naturally to speak respectfully and make eye contact, but others will have to learn.

Below is what I have prepared to teach them about how to communicate with someone with dementia. Although written to kids, there is truth for everyone.

Dementia is a huge umbrella term.
Because “dementia” is a part of so many diseases, it looks a little different for each person. Also, each person has a different background, different life experiences, different health challenges and different medications. Lots of differences!

The point is, because there are so many factors, there is no way to say, “A person with dementia will look like this. This is the way to talk to them.”

Here are some thoughts and suggestions:
1. The person with dementia is a person. Like any other person, they have a personality, and they can feel emotions and enjoy life.

      2.  Enter into their reality. What does this mean? It means, in their world, “home” might be the place where they grew up, and they think they can go there and see their parents. In their world, they might still have a job, they might be 43 and they might have a cottage up north. Because this is their world, their reality, they might say things like, “I want to go home.” “I have work to do.” “I’m taking a cab and going to my parent’s place.” Don’t panic, and don’t argue. Enter their world by saying things like, “What is your parent’s house like? Where do they live? What kind of a job do you have?” This not only gets them talking, but validates them as a person. It’s not lying, it joining them in their world.

    3. Like all people, they have good and not-so-good days. If they aren’t having a good day and seem sleepy, or angry or unresponsive, move on to another person.

      4. Avoid distractions. It’s hard for a person with dementia to process information, but if you meet with them one-on-one and maintain eye contact and SMILE, it is often a great experience.  If there are a lot of other people in the room talking, or a television or music, they can only process one of these things at a time.

   5. Talk about one thing at a time. Same as above, their minds move slower than yours, but they do move.

   6. Share yourself. They love to hear what sport you are playing or where you went on vacation (and what you thought of it.) Ask their opinion of things. They have lots of opinions!

    7. Speak clearly and naturally. Remember these are adults, and never talk down to them (as in “good girl!” or the like.)

   8. Identify yourself.” Hi, Mrs. E., I’m Sheryl. We had fun talking together a few weeks ago, so I came back to visit you again.”

    9. Listen. Even if you have no clue what they are talking about, listen and nod, smile and respond. (“Uh-huh.” with an interested look works fine.)

   10. Have patience. You might hear the same story several times, or have to answer the same question over and over. Listen and answer as if it was the first time.


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