Wednesday, 23 September 2015

Carpenter Wednesday--Letting go

I apologise for not posting for two weeks. My computer went on strike!

The day you realised you could no longer be a full-time care partner, you set out on a journey. You researched and toured and talked to others, looking for the best place for your loved one. You looked at finances and wrote "what ifs" on pieces of paper and counted the cost. You agonised and made the best decision possible.

Moving day came, and you didn't sleep the night before. You worried how it would go. Would they resist? Would the staff be kind? Would they have patience with incessant questions and unpredictable moods?

Now, several weeks have passed. Your loved one is settled in, and although life isn't perfect, there are positives. Mom seems to like her full-time care partner and is going to the dining room for meals. She's attended some activities, and even brought the fancy napkin home from a tea party and posted it on her bulletin board. When you walk in the room, she seems happy. When you walk out, she goes on to other things.

How are you doing?

It's a question I often ask family members. Many times, there is the answer they give (I'm fine. I'm so glad the transition is over. She seems happy.) and the real answer (I worry about her all the time. I wake in the night wondering if she's okay. The staff is great, but...)

It's hard to let go, isn't it?

What does letting go mean, anyway? Here is what it's not:
1) It doesn't mean you aren't a care partner any more. You have more support in the care of your loved one, but you make the decisions and control the outcomes. You are the most important member of the care team.

2) It doesn't mean you aren't needed. Instead of focusing all your energies on care needs, you can now spend time on fun things with your loved one. Is there an ice cream cone or a walk outside in your future?

3) It doesn't mean you shouldn't visit. Sometimes, depending on the person, it's wise to stay away or not visit too often in the first few weeks during transition. This isn't the case with everyone, but for some people it makes the transition easier. But after those first few weeks, your visits are important and needed.

4) It doesn't mean you love them any less, or you are less loving and caring as a care partner.

So what does it mean to let go?

It means you get to know the care team, find out who they are as people, and begin to trust them. Until you can trust that your loved on is getting good care, you will never sleep well at night.

It means you give the care team as much information as possible about your loved one: their background, things they like to eat and the little ways they like things done. You make sure they have all the information they need to do a good job. Then you back off. If something important to your loved one's care and well being isn't being done, you address it, but you don't sweat the small stuff. You look into your heart and ask, "Is this bothering Mom, or is it just bothering me?"

It means you set boundaries and don't feel guilty. This is a tough one. Boundaries are one thing ("I will visit three times this week and not every day. I will go away this weekend. I will consider a vacation.") but the "not feeling guilty" part takes practise. As you learn to trust the staff, and you can gradually open your hand and loosen the tight grasp that was necessary when you were on your own.

Letting go is freeing. You will always love and care, and, let's face it, you will probably always worry. But letting go lets you enjoy your loved one in new ways. It gives you the freedom to be with them without focusing on the minutia of their care.

Today, if you are in this position, open your hand--just a little.

Thursday, 3 September 2015

Care Partner Wednesday--The Care Partner's Alphabet--Z

Z is the end. No one wants to think about the end, but when the end comes, you'll be glad you did.

Since I've been working with the elderly, I've heard the term "palliative care," but I was often confused about what it meant. When the hospital declared someone palliative, it didn't seem to mean the same as when we spoke about it with our elderly residents. When we say someone is palliative, do we mean death is immanent? One of the nurses once told me everyone on our floor was palliative. My eyes opened wide; were we expecting an epidemic of some kind?

Now I understand. Palliative care and end of life care are not the same thing.

The World Health Organization has a comprehensive definition of palliative care.

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. 1
Palliative care looks at the whole person, from diagnosis to death, and seeks to provide the best quality of life at every stage. It looks at what kinds of support are needed, and medical is only part of the equation. Physical, emotional and spiritual supports are at least as important.

End of life care is when the person is "actively dying." They may stop eating, and take only a few sips of water. Swallowing becomes difficult or impossible. breathing becomes laboured. Extemities turn blue. Often, the person loses consciousness and the organs begin to shut down. The process may take hours, a few days or as much as a week.

The question is: what do you want?

Do you want every effort to be made to save your life? Extraordinary measures? It's not as easy a question as you might think, and there are many factors in the decision. When my husband died, we made every effort--several surgeries, intensive cardiac ICU, and LVAD and the transplant list. Why? It was his desire to live. He had a wife and three kids, and was only fifty-five.

Quality of life is a factor. In the last few weeks, he had no quality of life, but we soldiered on, because we didn't know the outcome. If he'd had a successful heart transplant, those few weeks would have been a blip on the scale. As it turned out, they were a slide toward home. But we didn't know.

Most of the elderly want "no extraordinary measures." But have they talked with their families about this? Do all the children understand and agree?

Where would you like to spend your last days? In your own home? In a supportive community with medical support available as needed? In hospice?

When you are "end of life," would you like someone with you at all times? Does it have to be family?
Would you like soft music playing? Someone to pray?

These are just a few of the many questions that haunt families. Care partners who have been looking after a loved one, want quality of death when the time comes. They want to carry out their loved one's wishes.

Have that difficult conversation while it is possible. As uncomfortable as it may be, when you near the end, you will be thankful that you know.