Caregiving during Illness

CAREGIVING

The Circle of Friends has many years of combined experience working with friends during their illness or disability. We are a team of 8 volunteers whose main driving force is to help those in need. We understand that helping someone with health challenges directly affects their emotional life and promotes positive energy needed to heal and regenerate.

Especially in the West we have a culture of individualism and independence -qualities that are also part of our Fourth Way School where personal evolution is our main driving force. In tandem, the acts of service, external consideration, compassion and kindness are keystones of the Work. As we grow older, we realize we are neither dependent nor independent – we are interdependent – we need each other physically, emotionally and psychologically if we are to thrive.

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”

Leo Buscaglia

OUR PROCESS TO HELP SOMEONE

Privacy and confidentiality are guiding principles within the Circle of Friends
We act when a friend in need requests help or we hear they may need help
We assess their needs and evaluate how best to help
We determine if the need is acute or chronic
- If acute, support is immediate. If the need is chronic, same steps below apply. We will need many more volunteers.
- We identify an advocate (usually a close friend or spouse) to interact with and be guided as to the friend’s needs.
- A circle of their friends is identified; they are recruited and schedules created.
- Our Circle of Friends Volunteer Sign Up page is used to schedule visits, meals, rides, or any other activity. Whether it is made completely private to a small group of friends or open to the community is determined by the friend in need and their advocate.
- This sign-up page is available to any center after some basic training.
- Payment for volunteers is available for both acute and chronic situations. Caregiver fatigue is a well-known issue.

SUMMARY

We encourage the friend in need to be first force so that we are third force in their journey.
We offer private group support with scheduling activities if requested.
A circle of their friends is formed to share in the responsibility and to support each other.
The larger Circle of Friends is available for guidance, support and resources.

TYPES OF SERVICES OFFERED

Paying for:

Volunteers for rides to medical appointments, shopping or outings
Prescriptions not covered by insurance
Some alternative health care if needed or helpful
House cleaning, laundry, shopping
Flowers & impressions
Providing medical equipment loans and supplies
Arranging for meals, soups, shopping
Medical alert device for emergencies & fall protection especially if living alone
Offering psychological and emotional support including visits, listening
Assisting in filling out End Of Life Documents

The information below was gathered from interviews with Mary Hinrichs, Elizabeth Blake and Janet Carter who have had extensive experience working with friends during illness, with dementia and/or during the dying process.

CAREGIVING – Practical Observations

In the process of caregiving for an ill friend,

In an emergency you may need to know what to do, act quickly and communicate with the Circle of Friends.
In non-emergencies, slow down, be patient, don’t move too fast.
Observe, listen, look. Use your eyes, ears and heart.
Always ask for permission before acting. Gain the friend’s trust. Show respect. Be sensitive to their needs.
Support their dignity and their control – encourage them to make their own decisions.
Look at their grooming needs such as haircut, bath, nail trimming, meals, etc.
Pay attention to detail: check the immediate environment to ensure things are clean and accessible. Look at the house, dishes, laundry, washer, dryer. Clean and tidy up where appropriate.
Home safety: check rugs, curtains, entryways, hallways, bathroom. Is there need for railings in bathroom, heaters, smoke/carbon monoxide alarms, firewood, etc.
Evoke Lightness – fun spirit: play music, bring flowers, dress cheerfully, smile, read, acknowledge their energy, bring a quote, be positive.
Don’t ask questions. Make offers.
Offer a time for tea, a walk, a drive, watch a video.
We may need to find a second and third advocate due to caregiving fatigue.
Encourage external health services as early as we can.

CAREGIVING – Psychological Observations

Empathy: try to meet them where they are. “I see you are really upset (sad, angry, depressed…), so what you are saying is you want ….. “. Wait for a response.
Do not trivialize their distress. Avoid giving well-meaning suggestions like, ‘take a bath, go for a walk… ‘.
Reflect back what you see or hear, repeat what they said, ask them to tell you again. The friend’s initial aim is not: ‘fix me’ but ‘understand me’, ‘acknowledge me’. Try to empathize, mirror what they are saying, let them experience that you really hear them.
Be third force – encourage: If someone is in physical pain, ‘I hurt all over’, ask, ‘What do you think I can do to ease your pain?’ Don’t be first force with solutions. Ask always for permission. ‘Would you like me to suggest…’
Help them be first force – take initiative, make their own decisions. Give options, give choices. ‘Do you see yourself doing this or that?
Relinquishing control is hard to do: Realize that as we get older, we begin to relinquish our control but there can be a lot of fear. This fear comes from our need for self-sufficiency and the possibility of losing the ability to take charge of one’s life. Ask, ‘Could you use help doing x or y?
Ask if it is OK to just sit with them together in silence. Just listen or read out loud.
See if it is possible to help them set aims for one week to do a, b c.
Recognize when you are not able to help and refer to someone else.
Be flexible, sensible, reasonable and responsible.
One person walking into a room where someone is in anxiety, panic or high stress, can bring a great sense of balance. The anxious friend is acting from his Amygdala -the most primitive part of the brain and the frontal lobe (reason, consciousness) is not activated. Calming, clear and simple instructions are needed.
Redirecting – it may help to turn their attention away from their current focus.

CAREGIVING – Philosophical Observations

Compassion – putting yourself in their place. Wanting to do all you can to alleviate their suffering. Come from love, care, non-judgement.
Gentleness, quietness, allowing for time, for flow, removing the ‘I’s.
Remove vanity about what you think you can do for a person.
Honesty – requires courage, listen to your heart, mind and intuition about what they might need.
Courageous loving: doing/saying what is necessary, not being afraid to suggest something.
Consistency: showing up, calling, going when you feel like you should.
Interdependence needs to be encouraged and may mean,
- external consideration, putting ourselves in someone else’s shoes. To help someone is to be externally considerate.
- paying it forward, doing a good deed without expectation of results.
- In giving we receive – if you allow me to help you, you give me the opportunity to serve.
- Value the time and energy you put into being with someone because it helps them and you. To be able to give is a gift-in-itself.
Overcoming hesitation in accepting or offering help
- Hesitation comes from thinking about yourself
- Hesitation may come from fear of owing a favor – letting someone do us a favor brings us closer.
- We take a risk (in the instinctive center) when someone does us a favor.
- Let yourself say YES to others doing you a favor.

HOW TO CARE FOR THE CAREGIVER

Being with them in presence is the best response.
Help them acknowledge they have become caregivers.
Don’t say, ‘call if you need me’. Check in with your emotional center and your intuition about what to do for that caregiver.
Don’t ask questions. Make offers.
Give the caregiver a break, find someone to replace them.
Support with funds, a night out, flowers, something that shows caring.
Give positive energy: listening, loving.
Help with meals, shopping, house cleaning, dishes, laundry.
When they are replaced by a friend giving them a break, encourage them to go for a walk, take a bath, go out for a meal, a meeting, have space for themselves.
Suggest they pair up with other caregivers to support each other
Help create some structure and rhythm to their day which will serve as grounding anchors in the ever-changing landscape of caregiving.
Connect with the caregiver after the spouse has died. Maintain connection for weeks and then monthly for a year.

Prepared by the Circle of Friends – January, 2022