A Caring Heart: Resources and Wisdom for Caregivers

Caring-Heart

Caregiving Books:

Caresharing by Marty Richards (Skylights Publishing)

Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers (Clergy Against Alzheimer’s Network)

Children of a Certain Age: Adults and Their Aging Parents by Vivian Greenberg (Lexington Books)

Caregiving Links

National Family Caregivers Alliance – www.caregiver.org

Alzheimer’s Reading Room – www.alzheimersreadingroom.com

Alzheimer’s Association – www.alz.org

To help make your caring heart more caring

“A person is a person through another person. My humanity is inextricably bound up with yours.” — Desmond Tutu

“Real care for a suffering individual does not begin with costly procedures, but with the simple gifts of love, affection, and concern.” – The Dalai Lama

We don’t really know who the person is…the full depth of the person, the soul…and so we listen. – Rev. Margaret Guenther, PhD

Being a compassionate presence means connecting to the sacred in another from the sacred place within us. – Christina Pulchaski, MD FACP

Causes of Spiritual Distress

-Meaninglessness
-Hopelessness
-Despair
-Grief/Loss
-Lack of forgiveness
-Abandonment/Isolation
-Anger
-Worry

Resources for Spiritual Wellbeing

– Individual beliefs and practices
– Support from family, friends, faith community
– Hope (in many forms)
– Resilience
– Finding meaning/purpose (even in suffering)
– Abandonment/Isolation
– Anger
– Worry

If I Get Dementia…

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
4. If I get dementia, ask me to tell you a story from my past.
5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
6. If I get dementia, treat me the way that you would want to be treated.
7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
8. If I get dementia, don’t talk about me as if I’m not in the room.
9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
10. If I get dementia, and I live in a dementia care community, please visit me often.
11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
12. If I get dementia, make sure I always have my favorite music playing within earshot.
13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
14. If I get dementia, don’t exclude me from parties and family gatherings.
15. If I get dementia, know that I still like receiving hugs or handshakes.
16. If I get dementia, remember that I am still the person you know and love.
–Rachael Wonderlin

Ways to communicate with older adults:

1. ACKNOWLEDGEMENT. To acknowledge is “to take notice of or reply to.” Sadly, many older people are not acknowledged when they need to be. Instead, they are overlooked, avoided and talked down to.

2. PARTICIPATION. To participate is “to have a part or share in.” In addition to the factors listed above, we need to be aware of issues that could affect a person’s ability to participate in a conversation. Language and cultural backgrounds can present challenges. Imagine if your primary language doesn’t match that of the person you are talking with and how disconnected you might feel.

3. ENGAGEMENT. To engage is “to interest or involve.” We need to speak in a way that encourages involvement and engages the older person in conversation. Be aware of your tone and choose your words carefully. If a person feels threatened, embarrassed or offended, they may shut down.

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