Wednesday, 29 January 2014

Caregiver Wednesdays--The quality of dying

It's the topic most people hate. Fear, even.
We don't want to think about it, yet every one of us will experience it.


The care of those who are dying is often called palliative care. I used to think I knew what that meant, but I discovered it's a far broader term than I knew. Listen to this explanation from Wikipedia.

"Palliative care (from Latin palliare, to cloak) is an area of health care that focuses on relieving and preventing the suffering of patients. Unlikehospice carepalliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilises a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual and social concerns that arise with advanced illness.
Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying diseaseor cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat aching related to an influenza (flu) infection." 1
 Palliative care is not a great term to describe the kind of care that is needed when a person is dying. The term is a lot more comprehensive, and tends to confuse.
End-of-life care? This is descriptive, and more accurate, but negative.
How about, "The quality of dying"? We talk about quality of life. How about quality of death?
So what constitutes a good death?
The specifics and details will be different for everyone, but I submit there are three areas that must always be present.
1) Pain-free
Pain management is incredibly important. No one should ever have pain. Ever. Medication should be in the correct dosage and monitored, but it needs to be a part of dying. Certain medications, such as morphine, have a bad name, and people are afraid of them. The truth is that proper pain management keeps the person comfortable, and this is important. The person who is dying may not be able to express that they are in pain, but verbal signs (groaning, sighing) or physical signs (grimacing, wincing, facial expressions) show the observant caregiver that pain is present and needs to be treated. If pain is properly managed, it doesn't make the person unconscious or put them in a stupor. The disease or the process of dying may leave them with decreased consciousness, but properly managed pain medication, won't.
2) Comfortable
Comfort encompasses a wide variety of physical, emotional, social and spiritual factors. It may be a special mattress or dressings, mouth care or flanelette close to the skin. Or, it may mean visits from family and friends, a hymn sung at the bedside, a family pet--anything that was important in life and may have special meaning or bring comfort in death. As difficult as it may be, it's important to talk about these kinds of things before the information is needed.
3) Care of the Caregivers
Dying is difficult, and not just for the person who is experiencing it. The family and friends who are there to support, need support. Have they eaten? Do they need to leave for a coffee, a shower, a nap? Do they need someone to talk with? Do they need a break? If you are outside the caregiving situation (such as a friend of the caregiver) stay tuned to their needs. They are close, and the emotions of the situation may make it impossible for them to recognise even the most basic needs. Keep in touch, even if it's by phone or text. Be there.
Probably you've never considered many of these issues. You should. And if you're a caregiver, it may be time to have a conversation about what is important. 

Sunday, 26 January 2014

The small miracle of cheerleaders

Brenda and Greta on her 90th birthday

Picture a young girl of eight or nine standing in the aisle after church. Disabled by crippling shyness, she stares at an older lady. Her enormous brown eyes, her only redeeming feature, are covered with glasses, and she shifts her chubby body from foot to foot as she waits. The elderly lady chats animatedly with the friends who surround her. Nearing her eighties, she looks regal with her white hair, classy coat dress and pumps.

Several minutes pass, but some slight movement draws Myrtle's attention to the young girl, and she smiles with all the warmth in her. Putting her hand on the girl's shoulder, she turns to her friends and says, "This is my pet."

The sun breaks through the clouds and shines brilliantly.

This scene played out every week. I would wait shamelessly for my fix. I knew the script--it never changed--but every time, it filled a void in me, and I went away satisfied. Until next week.

That lady was my cheerleader. She loved me with an unconditional love that fed my soul. We didn't have a lot of relationship other than those moments in the church aisle, although I remember once she sent me a card with Philippians 4:6 on it. She put lines in pencil to keep her writing even, and then erased them. She used The Living Bible, which was radical for a lady of her age at that time. "Don't worry about anything; instead, pray about everything; tell God what you need, and don't forget to thank him for his answers."1 She had me pegged. The consummate worrier, this became one of my life verses.

She died when I was in my early teens, and I was afraid to go to the funeral home alone. I went for a walk to the shores of Lake Ontario, just a few blocks away, and sat on the rocks and cried. That was my good-bye.

Picture a widow who just lost her husband of 30 years. She is lonely, confused and disoriented. Her friend takes her everywhere, just for company, and often Greta comes along. In her mid-eighties, she is a petite dynamo, ready to go shopping or out for lunch at any time.

My own mother died many years ago, and Greta adopted me. I see the compassion in her eyes as I talked through my pain with my friend, Brenda. Greta loved it when we went shopping (I hate to shop) and would look diligently for clothes that would suit my body and my budget. She was so excited when we found a bargain, and would exclaim over and over how good I looked in it.

Greta was a cheerleader.

When the news came to her, through Brenda, that I had met and married someone, she was delighted. I was thrilled to introduce my husband to my tiny encourager. Her grin couldn't have stretched wider.

The last few years, Greta slowed down. Her 90th birthday was a celebration of her delightful self, and just a few months later, on Saturday, she left us. But her heritage and her influence to her family will always remain.

And to me.

I think, maybe, God is calling me to be a cheerleader. It doesn't come naturally to me like it did to Myrtle and Greta, but I will ask Him to show me the lonely, shy or frightened person who needs someone to love them unconditionally and thoroughly.

And I will cheer.