The Twilight Years Are Here

The Twilight Years Are Here

Thursday, March 22, 2012

A helpful link

A great place to learn more about Compassion Fatigue

Turns Out I'm Only Human After All

I read an article this morning that really made me stop and evaluate a few things, “Compassion Fatigue Strikes Family, Even Animal Caregivers” by SUSAN DONALDSON JAMES | Good Morning America. The article states that thousands of Americans are suffering from compassion fatigue, a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.

Caring for others too much can hurt, according to the Compassion Fatigue Awareness Project, no matter how old you are or in what capacity you're providing care. "You take on the pain of others and suffer, bottled up, angry and suppressing feelings," said project founder Patricia Smith. "Your impulse is to rescue. You don't have any personal boundaries, but you become isolated and lose your self-care in the process."

Without paying attention to their own needs, caregivers can turn to destructive behaviors. "It's a natural consequence of stress," said Smith. "In healthy caregiving you are 100 percent present in their care with empathy and compassion. But it's unhealthy when things in your own life are not resolved and you take on their suffering as your own."

More than 65 million Americans, about 29 percent of the population, is providing care for someone who is chronically ill or disabled and spend an average of 20 hours a week looking after a loved one, according to the National Alliance for Caregiving in collaboration with AARP.

Just last night, I melted down emotionally and could not stop the flood of tears that washed down my face. I was on the phone with a friend and I admitted that I find the pain of others quite overwhelming sometimes. I said I wished I could just stop caring so much. I was informed I couldn’t do that because it is WHO I am.
When I got off the phone, I felt a serious need to apologize for breaking down. I mentally kicked myself for allowing the day to “get the best of me”, for temporarily losing control in the face of severe adversity.

I looked back over recent text messages from friends and I realized that when I’m asked “How are you doing?” my replies usually revolve around Dad, Peggy (the 89 yr old lady I work for as an overnight caregiver), the kids, etc. I guess they are my barometer. But I also noticed the number of times certain friends have responded, “But, how are YOU doing?” I know they are genuinely concerned but I don’t want to burden others with my feelings.

I usually reply, “I’m fine, just tired.” There you go, I admit it. I am suffering from Caregiver Fatigue (CF). I also admit to suffering from Superman (or in my case Superwoman) Complex. I find it nearly impossible to admit that life overwhelms me sometimes. I would much rather convince the world and myself that I can handle anything, anytime. I can’t stand to let, what I perceive to be, my weaknesses show except to a VERY select few. This, of course, becomes a factor in the never ending cycle of CF.

I have spent my whole life caring for others. I have always put the needs and wishes of others before my own. I honestly wouldn’t have a clue how to behave any differently. It IS who I am. There comes a point where even I have to realize that it can wreck your emotional health (and in some cases, your physical health as well).

Yesterday, I started my day, after an almost sleepless night with Peggy, to find that she is growing weaker instead of better. (A couple of weeks ago her Home Health nurse recommended that it was time to bring hospice in. Her daughter, who is also her power of attorney, is vehemently against the idea, stating that her “girls”, meaning we caregivers, can handle it). Here, I will go on the record and say that the additional help would be most welcome for all of us.

Add to that… getting potentially bad news and seriously bad news from two different people closest to me.

Then, I spent several hours listening to Dad tell me he thinks “it would just be best to go ahead and die”. If that weren’t enough, he seemed to take great satisfaction in coming up with various ways he could “end it himself”. As much as I know it is his Alzheimer’s talking, I couldn’t help getting upset by it. Not to mention being completely frazzled by trying to keep 4 children out of the room so they would hear as little as possible of what he was saying.

Ok, so reading back through my day yesterday gives me pause. I have every right to fall apart occasionally. I have every right to feel sadness and pain. Maybe, if I claim those rights and get off my own back, I will be able to deal with the stress and fatigue a bit better. I am doing the best I can with all I deal with and I need to give myself a break from judging myself so harshly. I need to stop being my own worst enemy and get off my back a bit. Because in the end, I have to remind myself that I am only human.

Sunday, March 18, 2012

A Step Away From Dementia

I want to take a step away from Dementia (though it is something that both my mother-in-law and my grandmother suffered with). I want to talk about death. I want to talk about life…
As many of you know, I lost my mother-in-law to COPD & Congestive Heart Failure in April 2010. She was hospitalized for more than a week. She was on a ventilator for 5 days before it was finally cut-off. When the respirator was turned off on that Fri, I stayed by her side. The only time I left was for less than half an hour to take Dad home and hand him over to Richard.
One of the hardest things I’ve ever done in my life was to sit there for 24 hours with her, knowing that the end was coming and there was nothing I could do to help. It was unbelievably painful to watch her struggle to take 8 breaths a minute for over 3 hours. The only consolation I had was in knowing the morphine and Ativan she was receiving by IV were ensuring she couldn’t feel a thing. It was explained to me by the nurse that the hospital we were in practiced “Comfort Care”. She carefully outlined what that involved. As a family member, and her caregiver, I had the right to tell them when I thought she was in pain and they could give her extra morphine. They couldn’t do it unless I told them to give her more relief. She explained that it would slow down her breathing and enable her to die more peacefully and completely pain-free.
Another of the hardest things was explaining to Dad that he had to tell Mom it was ok to die. And one of the most beautiful things I’ve ever seen was her doing exactly that after he said it. She died with dignity. The two most profound moments in life are birth and death. There can be beauty in both.
6 months after Mom passed away, my beloved sister-in-law got up on 10-10-10. She fixed herself a glass of milk and a cup of coffee, sat down in her favorite chair, turned on her favorite movie channel, sat back and her heart stopped beating. Not a heart attack, a heart disease that no one knew she had. But the look on her face was one of peace.

On Feb. 28th, my oldest daughter gave birth to a baby girl, 7 weeks early and weighing only 4 lbs 8 ozs. Naturally, I got there as fast as I could. 11 hours later, I saw my new granddaughter for the first time and my heart filled with love. That night as I stood next to my 92 year old grandmother’s bed, she held my hand and said, “I just want to go home, Baby.” She had made similar statements many times in the recent past but this time, I knew in my heart, was different. I shivered as my heart filled with love.
The following morning she had difficulties that brought the hospice nurse out. My grandmother was in end stage COPD, a result of being in Congestive Heart Failure. It was quickly apparent that she was sliding downhill at a rapid rate. No more assisting her out of bed. No more solid food…soft foods and liquids only. All medications were to be crushed and mixed with pudding or yogurt. At 2 a.m. the following morning, I attempted to give Grandmama her meds, unsuccessfully. The nurse-practitioner (a family friend), officially declared that she could no longer swallow anything but liquids and she was removed from soft foods.
By the next morning, Hospice had taken her off liquids as well and it was decided to begin comfort care medications by mouth. Most commonly used is a combination of Ativan and Morphine. It is measured into a syringe and slowly administered under the tongue. It is massaged into the skin by rubbing the cheek, chin, etc. closest to where it is placed under the tongue. There were Certified Nursing Assistant’s there throughout the day but they can’t legally administer the medications. I, as a family member, could. So, I did.
Here, finally, was a gift I could give my grandmother. She had given me so many amazing gifts throughout my life. She gave me the gift of life itself. She gave me my morals and ethics. She gave me the capacity to love unconditionally. I could make a list a mile long but I won’t because many are too obvious for words. I felt overwhelmingly honored to know that I could help her pass painlessly…peacefully…with dignity.
The peace that surrounded me throughout the night showed me a beauty I had never known. I watched her snoring for several hours. I watched her breathing patterns change. I listened as her snoring stopped and her breathing became shallower but quieter. I watched her pulse change as the night wore on and I knew what the changes meant. And I administered her medications, on time, every time.
I knew at 6:00 a.m., when I gave her the last dose of medications, that it wouldn’t be much longer. I was shocked to discover I wasn’t heartbroken to know the end was near. I have never in my life known such peace as I felt at 7:13 a.m. when she took her last breath with my hand resting on her chest. My angel had gone Home. God was with me the entire time…and He was with her. And He got my attention once and for all.
With every turn my grandmother took for the worst over a 36 hour period, my granddaughter took a turn for the better. There is no doubt in my mind that the two were connected. As my grandmother was in her final moments, the baby took a turn for the worst that put her back on the machine we had just gotten rid of. She rebounded quickly after Grandmama passed on. I am blessed to have witnessed such things.
Life and death are completely entwined. They go together hand-in-hand and will for all eternity. You cannot have one without the other. And there is beauty in both. We must simply open our eyes and our hearts to see it…