Thursday, 28 May 2015

The small miracle of courageous living

Fear and I have been both good friends and bitter enemies all of my life.

When I made friends with fear, he helped me make poor decisions that allowed my life to shrink into a tiny box. There were things I didn't do and places I didn't go and experiences I didn't have because of fear. He kept me close, and for the most part, I allowed it.

Then there was a day I made the decision to live life differently. I decided that fear wasn't a good or true friend and the little box that was my life was restricting. Of course, it was fine to make that decision, but a painful process to start living it. It didn't change overnight, and there are times when I wonder if it has changed at all. It has, but fear is a jealous lover and keeps coming back and whispering in my ear. I know better. I know my true Friend, who calls me Courage and gives me the strength to fight. I know, but sometimes I stumble.

These days, fear is more insidious. It can't get to me through the old, blatant ways, so it creeps in the back door and starts to whisper. I'm ashamed to say, sometimes I listen. For a while.

For the last seven years, I have been learning, studying and working toward being a writer. I took courses, attended conferences, started this blog, attended webinars and wrote a novel. That's right. I wrote a novel. I worked with two writer friends and edited it until I had it as good as I felt it could be. At a writer's conference, I spoke to an editor about it, and she asked for my manuscript. I sent it.

You need to look at the last paragraph. Those are not the actions of a fearful person. There was lots of trepidation involved in signing up for my first course and attending my first conference, but I did it. I didn 't believe I could write fiction, but I did. I stood in a room crowded with other writers and signed up for interviews with editors and agents. I talked to them through nerves and jitters. I pushed send.

You would think by this time, fear would be no more than annoying twitches at the edge of my consciousness. A little mosquito to swat and go on with life. Not so.

I received my manuscript back from the editor with eleven chapters edited, which was a tremendous gift on her part. Her letter was complimentary and encouraging. She suggested I look at what she'd edited, apply it to the rest of the book and send it back to her. She said it was almost there. She said it was an important topic and I was the one to write it.

I should have been ecstatic. I was ecstatic, but fear started to whisper, and I listened. "What if you can't figure out what you're supposed to do? What if you send it to her and it's still not right? What if..?" The whispers turned to shouts, and before I knew it, I had been paralysed for two weeks.

Two weeks! I didn't read the edits, I didn't work on it at all. I didn't open the manuscript. Fear sat beside me, feeding me excuses. I was too tired. I needed to spend time with friends. My house needed cleaning.

Sometimes when the enemy tries to tie you up with fear, he blows it by going too far and doing something ridiculous. In the middle of cleaning and organising every cupboard in my kitchen, and the stove and fridge, a thought struck me.

I must be some kind of desperate to be cleaning instead of writing, because I unequivocally hate housework.

I began to think of all the people who invested in me as I learned, and those who stand in the wings and cheer. I thought of my story, which, although fiction, has an important message. I thought of the people I was hoping would read it.

It took a few more nights, but finally I sat down and opened the manuscript. I took notes, and it became clear. I tend to revert to passive voice, and I need to use more active verbs. There were a few times I told instead of showed. I began to get excited. Yes, I saw what needed to be done, it wasn't major, and I could do it.

And now I am. Chapter by chapter, I'm back on track.

I write this tonight because: Even though I am far along in this journey of fighting fear, it was able to render me ineffectual for two weeks. It's sneaky. It's paralysing. It's embarrassing.

The other reason is, I know I'm not the only one fighting this battle. The key is to listen, and to hopefully not take two weeks (or a lifetime) to do it.

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes before you. He will never leave you or forsake you." Deat. 31:6

Wednesday, 20 May 2015

Carepartner Wednesday--The Carepartner's Alphabet--R

R is for roles, because yours is changing.

And staying the same.

At the same time.

Chances are, you have a specific role with your loved one. You are the sister, the daughter, the friend, the son, the husband or the wife.You are comfortable in this role, and although you may seldom think about it, your role has evolved over the years. Being the son isn't the same as it was when you were five, or even when you were twenty-five. You aren't the same person as a wife as you were on your first anniversary. Without noticing it, people grow and change constantly and our roles evolve with us.

Your role as care partner may have been sudden. An event such as a stroke, a hospitalisation or any other kind of sudden decline thrust you into the position of having responsibility for another person and making difficult decisions about their care and their future.

Even if the changes happened slowly, there was probably a day when it struck you. Like the frog in the pot, we can deal with multiple changes until it suddenly strikes us that change has occurred and it's permanent.

I remember the day I came home from work early because of a call from a visiting nurse. My husband and I had been through nine months of changes and hospitalisations. His health was steadily declining. Because he made most of the decisions about his care, got himself to appointments and looked after his own medications, I didn't consider myself a caregiver. I was a supportive wife. When I descended the stairs to the basement and saw him sitting in his recliner chair with pills scattered all over the carpet around him, I knew in that moment my role had changed. I was still a supportive wife, but I also needed to care for him and make decisions. My heard dropped and I was afraid.

There is no magic formula for finding a comfortable place in your new dual role. As is often the case, every person and situation is different, and you need to find your own way. Here are a few suggestions that might help.

1) You are going to experience a myriad of emotions. Fear, anger, frustration and especially grief may overwhelm you. You may feel immeasurably sad as you realise it will never be the same again. This is normal. Find someone to talk to. A counsellor with experience in this kind of situation would be ideal, but a pastor or trusted friend could help, too.

2) Find ways to connect which are outside of your carer partner role. Don't allow everything to become about the disease. One daughter plays cribbage with her mother as they always used to. A wife has dinner in the dining room with her husband every evening. A family bring in Mom's favourite food and eat together on Mother's Day. A granddaughter brings her baby in to charm Grandma. Look for connections that are both normal and fun.

3) Isolation is often a huge problem. Choose a few trusted friends and explain to them the changes in your lives and how you are dealing with them. Then consider inviting one or two over to visit. If a meal is too much, just have coffee together, but include your loved one. Don't allow your world to shrink any more than is necessary.

4) Take care of yourself. (Don't I always say this?) The energy involved in figuring out your role and living it out can take a huge toll. Make sure you are nourishing yourself, both with rest and with stimulation, outside of your role as care partner. You will be more able to carry on.

5) Write things down. It always helps me to keep lists. What works and what doesn't, ideas to try and connections with others to make. Lists are helpful to keep you focused in this scattered journey.

One of the difficulties of taking on the role of care partner to someone you love. is that you no sooner get it figured out and it changes again. Your original role (wife, son, sister etc.) is the same, but it will manifest differently as your new role of care partner evolves. Both roles are important, and feed into each other.

You'll know you are making progress when you can celebrate both.

Wednesday, 13 May 2015

Carepartner Wednesday--The Carepartner's Alphabet--Q

Q is for questions.

The same questions asked over and over again.

And again.

It's common among people with Alzheimer's and other forms of dementia, to ask the same question (or set of questions) repeatedly. Wise is the care partner who looks for ways to both understand and cope with this. The alternative is a care partner with bald patches on their head, because this behaviour can definitely lead to the frustration of pulling out hair!

Here are ten tips to deal with repeated questions.

1) Remind yourself this isn't being done on purpose to frustrate you. It may be happening for any number of reasons, but a malicious plot isn't one of them. No matter how much it may seem that way, it isn't possible.

2) Stay calm, and put on patience like your winter coat. When it's been a long day and you are tired, it can be difficult to keep a patient, measured tone and answer the question as if it were the first time. Remove phrases like, "I told you..." and "Don't you remember..." from your vocabulary.

3) Look for patterns. Is there a certain time of day when these questions get more frequent? Is the person tired? Hungry? It might be possible, at least some of the time, to find an entirely different root cause to the questions. When that need is met, the questions may stop.

4) Ask yourself, "What's happening here?"Maybe the fourteen questions about an outing are really expressing anxiety. Maybe there's fear or frustration at the root of the questioning. Can you discover an emotion that is the cause of the questions?

5) Answer the question, even if you just finished answering the question. People with dementia process information more slowly, which may be why the repeated questions.

6) Distract. Sometimes, after answering, it's possible to turn the conversation around, or involve the person in another activity which stops the questions. There are times when this doesn't work, and you need to be sensitive. If your distraction is leading to frustration, drop it.

7) Accept it. Although this sounds harsh, if you are able to accept the repeated questions as a part of your relationship, it will be easier for you. Remember, although it is frustrating, this how you communicate at the moment. Find a way to make it work. Sometimes a big hug is enough to turn things around.

8) Keep a sense of humour. This tip more than any other will be your salvation.

9) Talk to others. There is a certain catharsis in sharing some of these difficult situations with others who are experiencing the same challenges.

10) Take a break. It may take a little planning and some investment of money, but a day away can work wonders in restoring your patience. Remember to look after you.

Questions are communication, and if they are repeated continually, that is also communication. Your job is to discover what is being said.

Wednesday, 6 May 2015

Carepartner Wednesday--The Carepartner Alphabet--P

P is for purpose.

"Food and shelter can be withheld, but meaning is something others cannot deny us. Regardless of our life situations, as humans we are always seeking meaning." 1

Without purpose, life is flat. It's a series of obligations, where we trudge through each cold, grey day. Nothing matters.

Purpose brings colour and sparkle. It makes what we do in a day matter. Purpose is a job we love, relationships that matter, and making a difference.

For someone with dementia, or who is elderly and physically frail, purpose can be elusive. Think of these scenarios:

  1. George was a great husband and father. He took his boys to innumerable hockey practices and provided for his family. He took his wife out dancing and took the family on vacations. He was the salt of the earth. Now George is elderly. He has dementia, and describes the workings of his mind as being "cloudy." He is incontinent and in a wheelchair. His gravelly voice is difficult to understand.
         How do you help George find purpose?

     2. Flo was a strong, independent woman all her life. She gave her life serving others, but on her
         terms. Now, her body betrays her every day. She can no longer walk and lives in chronic pain. It
         galls her every time she has to ask for help, which happens several times a day. She is sinking
         into depression, and doesn't understand why God doesn't take her home.

         Where is the purpose for Flo?

     3. In their marriage, Pat was the strong one. A woman who spent her life being in change, she was
         caregiver for her husband for over a year as dementia changed the man she knew. She was
         brave and capable. Then came the day she moved him into long term care. A few weeks later, 
         she was distressed to find her husband was completely happy in his new situation. He seemed to
         enjoy the freedom of being on his own, and it shook everything she understood about their
         marriage. Pat no longer understood her role and she floundered as she looked for purpose.

         How can we help Pat to find her way?

Purpose is both individual and elusive. It involves knowing the person well, but understanding that what may have been important a few years ago may not be what makes life purposeful now. 

As care partners, helping your loved one find their purpose might be the most important journey you take. Purpose involves helping the person find what makes them feel valued.

Here are some statements that lead to purpose:

"I really enjoy it when we ________________."

"I've never been to Paris. What did you like about it?"

"I need to ask your opinion about_________."

"I just love spending time with you. You teach me so much."

"Could we go for a walk together? I really love to spend time with you."

"I really need your help with___________."

Elderhood is not a time to be constantly served. It's not a time to lay on your bed and wait for the end. Each elder has something to offer. A sense of purpose.

Help them find it.