Thursday, 25 June 2015

Carepartner Wednesday--The Carepartner's Alphabet--T

T is for truth.

In any stressful situation, truth can hide. Black and white is smudged and emotions, fears and the constant barrage of change can leave us rubbing our heads and wondering what is truth in this circumstance. Or worse, believing a lie to be truth. This is often the case for a care partner.

Sometimes, we live in denial. "She's not really sick. The diagnosis is wrong. It's not that bad."

Sometimes we live in false hope. "They're going to find a cure. Any day now."

Sometimes we live in despair. "She's not the mother I knew. I don't recognise her any more than she recognises me. I can't handle seeing her like this."

Sometimes we dismiss the problem altogether. "She's already dead, it's just that her body doesn't know it yet. Spending time with her accomplishes nothing."

None of the above statements are true. (Correction: I'm sure a cure will be found at some point. It's just not likely to be in time for your loved one.)

What is true?

Here are five statements I know to be true.

1. She's still there. She has changed from the mother you knew when you were growing up, but you're not the same person you were at fourteen, either, are you? People grow and change. Alzheimer's or some other disease has made the change more dramatic, but she's still in there. Look for things that are the same. Does she still like peanut butter sandwiches? Does she retain some long ago memory from times at the cottage? Is there a song she still loves? It's there. Look for it.

2. You still matter. It's quite possible she doesn't know your name. She may get the relationship mixed up and think you are your father or her brother. She may think it's a different time. But she knows you are significant in some way. You matter.

3. She is here for a purpose. You've probably asked yourself a hundred times, "Why is she still here? What's the point?" There is a point. She still has something to give. To you. Find it.

4. There is pain. There's no denying that. But there is more than pain. Look beyond your pain, and find joy. Go for a walk with her. Buy her ice cream. Laugh together. You don't have to understand every word she is saying or what she is talking about. None of that is as important as we used to think it was. Just be together and enjoy her.

5. This is finite. There will come a day when you won't be able to spend time with her. She will be gone forever, and so will your opportunity.

Here is one more truth. Guilt and regret can be overwhelming when you realise it's over and you have no opportunities any more.

Think about it.

Wednesday, 10 June 2015

The Small Miracle of Surprise

Something happened yesterday that surprised me.

It shouldn't have.

Freda lives in the neighbourhood where I work as an advocate at Christie Gardens. She says very little. Days might go by without her speaking, and if she does, she only says "yes" or "no." She still communicates, though. She has the most incredible smile that makes the sun rise and the stars twinkle. Her face lights up whenever she sees me, and it makes my day. She can't walk, so she spends her days in a wheelchair. A staff member assists her with her meals because she has difficulty swallowing, and she eats slowly and carefully. Sometimes she coughs.

She and Susan sit at the same table. Susan is a tiny, Asian lady who is non-verbal. Her gorgeous brown eyes follow your movements but she doesn't smile or speak. She has multiple challenges with meals as well, and assisting her to eat is a long and sometimes difficult process. There were times when my heart would break for her as she struggled.

The two ladies sat beside each other at opposite corners of the table for well over a year. They didn't talk, but they communicated.

Just in case you think meals are serious and silent, let me assure you the opposite is true. Those of us who are helping, talk and laugh and communicate with everyone at the table, including these two ladies. Freda laughs with her whole body when something strikes her as funny. Susan watches with her chocolate eyes and listens. We love them all.

Two nights ago, Susan died. After many months of struggle, she left us as she lived her last few years. Quietly.

Yesterday at lunch, the care partner who was helping Freda asked if Susan was coming to lunch. Another care partner replied, in a hushed voice, "She died last night."

There was a pause. Although I didn't notice at first, Freda's face turned crimson. Huge tears rolled down her cheeks and she began to sob. Immediately we rushed to hug her and reassure. Her friend suffered no pain. Susan was free from her struggles now.

It took several minutes for Freda to stop sobbing, and we held her tight and silently mourned with her. Although they had never said a word to each other, there was an unspoken
camaraderie. A friendship. And there was grieving.

I was surprised, but I learned a lesson that day, and I will never be surprised again.

"Blessed are they that mourn, for they shall be comforted." Matt. 5:4

*the names have been changed

Wednesday, 3 June 2015

Carepartner Wednesday--The Carepartner's Alphabet--S

S is for siblings.

I have seen so many families over the years. Sometimes it breaks my heart as I see a wife struggling to care for her elderly husband, and watch her pain as he deteriorates. I am moved when I see a couple who has been married for 73 years, sitting on the bed together and leaning toward each other. Sometimes there is a nephew who is at a loss, wondering how to help his cranky aunt, or a son whose life revolves around his ailing mother. There are so many variations on families.

Then there are siblings.

Sometimes they all work together and agree on mother's care. But not usually.

Here are some variations I've seen:

  • There is often one sister who does most of the work. She resents the others.
  • Daughters often count the pennies and sons usually say, "Get her whatever she needs." Daughters resent sons who say that.
  • Sometimes, there is a "daughter from Florida"--one who lives out of town and flies in, seeing something wrong everywhere and wanting to change everything. Then she flies out.
  • In a group of siblings, someone is often in denial. They are sure it's not as bad as the others say.
  • Mothers are very good at pushing their daughter's buttons. It doesn't usually go the other way when mothers are elderly.
  • I have seen sons who dote on their mothers, and at least one who pretty much ignores her. 
One thing is universally true. If there were problems in the family before siblings became care partners, the problems will get bigger and more difficult after. Families who have coped with their differences by staying out of each other's lives, can no longer do so. They have to talk and make decisions and they probably don't agree.

How do you handle this?

There are no perfect answers. Here are a few suggestions that might help.

1. Communicate. Everyone (at least everyone involved in decision making) needs to know everything. There is no quicker way to cause dissent than to leave someone out of the loop, of for everyone only to have part of the information. This is much easier with email. Also, if things are written down and sent to everyone, no one can say they didn't know.

2. Communicate. Didn't I just say that? Sometimes it's important for everyone to get together to make an important decision. Make sure everyone is heard, and keep notes of opinions. Weigh the options and work hard at being civil, no matter how strongly you feel. It may be necessary to lay some ground rules before you start.

3. Communicate. (Am I getting my point across?) When you are discussing important topics about your parent's care, leave yesterday's battles behind. Focus only on the issue at hand. Drop words like "you always" and "You never" from your vocabulary.

4. Communicate. Where have I heard that before? Think about what you want from your siblings. Is it emotional support? Physical help taking Mom to doctor's appointments? Financial help with some of the bills? Put together a reasonable list, and then talk about it. 

5. Communicate. Last time...If there's been years and years of dysfunction in your relationship with your siblings, you may need the support of professional help. Talk to someone who can support you

and give you some tools to deal with the many issues that are going arise.

Siblings can be wonderful. Best friends. Or not. Whatever your relationship with your siblings, being a care partner is going to put a strain on it. So--communicate!
                                                              My sibling, Wendy