Sunday, April 25, 2010

The Nature of Caring; A talk I gave in 2008

The Nature of Caring; the Helper’s Journey
Beverly L. Moore

What is caring? Why do people choose to care for others? How do we keep caring without burning out? People through the ages have taken care of others; their family members and sometimes strangers. The story, the Good Samaritan, in the Bible (Luke 10: 30-36) is a story of a wise compassionate helper. While two religious leaders passed by a wounded man in the road, a Samaritan stopped, washed and bound the man’s wounds, placed him on his donkey, brought him to an inn, and paid for his stay at an inn while he recuperated. He returned on his return trip to see if the innkeeper needed more money to care for the wounded man. Why did he stop when the others didn’t? He had compassion.

All of you are here because you are compassionate people. You’ve taken it upon yourselves to help another lead a healthier safer life in sickness of body, mind or soul. You are special people.

I’ve learned some things working with caregivers for some 30 years; first, most caregivers don’t see themselves as caregivers at all, and expect no recognition for what they do. They just do what they feel needs to be done. “I’m his wife, of course I am going to care for him.” “My mother cared for me all my life; now it is my turn to care for her.” Others with little motivation to care, simply say “someone has to do it; I guess it is me.”

Caring can take the form of being there emotionally, socially, spiritually, financially, physically to someone disabled. There are all kinds of disabilities; some may not be apparent to a casual observer. You can’t see depression, mental illness, or a cognitive impairment like Alzheimer’s disease. The cognitive disabilities call for a different kind of care. There is sometimes little cooperation from the person being cared for, making care more difficult and emotionally stressful, and lonely if done alone.

When a person needs help short term giving help is often doable. When that short term turns into a long term commitment one must give over and over, sometimes with little improvement, perhaps little thanks from the person cared for or from other family members.

There are stages in caregiving, and the needs are a bit different in each. In each season or stage there are pleasures and pitfalls.

When there is an awakening to a need which I call the spring season, education and resources are needed. Once these are in place the caregiver feels empowered to make a difference. I call this the summer season of caregiving. The caregiver feels satisfaction in being able to make a difference. A caregiver needs this feeling of satisfaction and control to persevere on the journey. Later on, however, there is a time when the caregiving continues and one sees little, slow, or no improvement, perhaps even decline in spite of one’s best efforts. I call this the fall season, when tiring of an often thankless job is common. In this stage the caregiver may need new information, new management tools and further resources as well as emotional support during the grieving process. The last season is winter, that period of saying goodbye, perhaps deciding that long term placement or hospice is needed. This is time for grieving the loss and thinking about moving on in life. ( I believe there is ongoing grief in a progressive illness as well as an anticipatory grief in looking to the future.)

What keeps us going through these stages? It is said that the caregiver needs 3 things; satisfaction, a sense of control, and validation. What gives you satisfaction to keep going? What does that look like? Wherein do you find a sense of control over the progression of the disability or disease? And where do you get validation for what you do?

The pleasures or benefits of the caregiving journey:
• Discovering who you are anew
• Discovering a sense of mastery
• Discovering new ideas, interests, skills
• New or renewed relationship with the person cared for.
• A new relationship with other family and friends
• Time to say ‘thank you’
• Time to say ‘I forgive you’

There are times, however, when none or few of the needs are met. We care as if involved on a continuum; sometimes we need to detach ourselves, other times we become over involved. A healthy place is to have a detached involvement, a place of keeping ourselves intact emotionally while deeply involved in caring. It is almost a professional stance that is self preserving. Because our caregiving is personal, not ‘professional’, we are apt to feel burnt out from time to time. Remember, only people ‘on fire’, burn out. Having compassion is the nature of, and a risk in caregiving. How can we avoid getting burnt out and falling into the ‘helper’s pit’?

The pitfalls of caregiving are:
• Trying to do it alone
• Refusing relief
• Doing it too long
• Jeopardizing one’s health and well being in service of another.

Can you add to this list? How about anger and resentment? How does that creep in and what do you do about it?


I’ve also learned that each caregiver has a ‘perceived burden’ in the experience. Each one’s tolerance is different; for one, a task is nothing, to another, a major problem. Each person needs different help, each sees respite or relief differently. It is a personal journey, so…………..

What is caregiving to you?
What are the rewards?
Do the rewards outweigh the problems?
What are the problems? What is the ‘perceived burden’ to you?
What would ease the burden of caring for you?
What season of caregiving are you in?
What do you need to keep going?
What does respite (time out) look like to you? Do you take it?
Do you accept help from others when offered?
What do you do when you need help and no one offers? Can you ask?
How do you handle others resistance/refusal to helping you?
Where or to whom do you go for relief or comfort?


Beverly L. Moore, RN, CS

StilMee™
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Thursday, April 22, 2010

Sound Advice

May is National Good Hearing Month. I had to get 2 hearing aids last year after I discovered a 50% hearing loss. I was feeling isolated in conversation, unable to hear the exercise instructor at the gym I go to daily, uncomfortable at family functions when everyone laughed at some silly joke a grandchild said, and not hearing invitations to other events at times. I was the one who noticed and I got help.
What happens to the person with a cognitive disorder who already feels left out, somewhat confused in conversation, and missing the point of an invitation or a story? We must do everything to enhance life for the person with memory loss. Adding a hearing deficit to an already compromised existence is preventable. Don't just ignore signs of hearing loss in yourself through pride, and don't ignore them in your family member with dementia. Signs can include isolation, suspiciousness, missing the understanding of conversation or answering inappropriately, as well as withdrawing, depression and seeming confusion. Hearing corrected can make the difference between feeling left out of family life and feeling like a worthy member who is valued.

Friday, April 16, 2010

Educate yourself

I have a spotlight on WATD one Saturday a month with Greg Porell's South Shore Senior radio show. Tomorrow I'll talk about the value of activity to the person with Alzheimer's or related memory disorder AND their care partner. People with Alzheimer's have a hard time initiating meaningful and enjoyable activity and if someone doesn't do that for them, they pace or rummage or wander trying to find something or someone to bring them enjoyment. This is a tall order for caregivers especially if the person hasn't had a full social life. An adult day program is ideal for introducing socialization, fail-free (low frustration high satisfaction) activities and nutrition as well.
The TV is the worst form of structure as it is not interactive unless shared with another person who makes comments about the program. It is also usually confusing as the scenes change from programming to commercials which are not related to the program. Lack of attention, retention and concentration make TV a poor substitute for a person.
Beverly

Thursday, April 1, 2010

FAQ

There are questions that are asked AND questions that should be asked by the caregiver for someone with Alzheimer's or a related memory disorder. Here they are.

FAQ:

1. She accuses me of things I didn’t do; how should I respond?
2. Does every Alzheimer patient get violent?
3. How will I know when to look for a nursing home?
4. Can Alzheimer’s be prevented and how?
5. Can a person catch Alzheimer’s? I don’t remember things lately.
6. How long does this disease last?
7. Should I take fish oil? Does diet matter?
Questions that should be asked---
1. Is getting a diagnosis by a neurologist necessary?
2. What is he experiencing; can I understand it?
3. What do I need to know as a caregiver for someone with Alzheimers?
4. Is there any other treatment besides medicine?
5. What happens at a diagnostic workup?
6. What are the resources I should know about in my area?
7. Should I go to a support group? Why? Do they really help?

What are your questions?