Caregiving from the Heart

I found a book that is excellent for anyone who is currently or who will soon be the caregiver for elderly parent or relative or friend. (Click on the title of his post and it will take you right to Amazon.com to order, or you can purchase it from Barnes and Nobel.)

Although, it never offers advice or "how-to", what it does do is let you know that you are not the only one... others have had your problem and they tell about their thoughts and feelings and some even tell you how they handle those feelings.

After I read the book, I had an opportunity to chat a bit with one of the authors, Roberta Cole. She is an amazing woman, to be sure.

Gina: I want to say that I really enjoyed your book. I am the caregiver for my Mom. She’s going blind, so I identified immediately with these stories! I learned a lot and I am thankful you took the time to put this together! It is good to know that there are other people out there that have experienced the same thing I’m going through… their thoughts and how they’ve come to terms with it.

Let’s talk about this new way of life called Caregiving. It’s only been since the ‘50s that the “family group” has reduced in size to a single family home. That’s not so far in the past that extended families have been living together and taking care of each other. Hasn’t caregiving been around for centuries with the extended family living in a close group? What’s new about it?

Roberta: Yes Gina, that is true! It is less true in the United States than in "old" world countries, however, and much less true now than in the past. Things have changed drastically in terms of a shift to single family households, to far greater incidences of longevity, and certainly to an increased sense of entitlement to self- fulfillment. Many of us are caught between a rock and a hard place.In "Caregiving from the Heart: tales of inspiration" we hear from so many caregivers who are committed to caring for their loved ones but feel squeezed to the max with increased demands on their own lives. There is even a nephew caring for his uncle who is so overwhelmed, working as a high pressure attorney and trying to maintain his own social life, that he has fleshed out an intricate bio that he distributes to people he meets to short circuit the time it would take to get to know them- unbelievable but true! Technology has obliterated boundaries between work and recreation, so that home has become work and work has become home. Caregiving, although more of a necessity than ever, is now more of a conscious choice because there are also many more alternatives in terms of facilities that offer care. The challenges are very real.

Let’s say there’s a person who is the only one in the family who lives close enough to give the care, but just doesn’t want to do it. What kind of advice would you give a person who is a reluctant caregiver?

Roberta: This is a very personal thing. It is difficult to determine what someone should or should not do. I can only say that from my experience,I found that people are turning out in vast numbers to care for loved ones. Many have strained bonds with their care recipients but show up anyway. There is a story of a gay son who was banished from his father's life, but when the time came, he was the one who was there to help. It is a chance to do the right thing, to heal old wounds and to make a difference. Besides, aren't all caregivers "reluctant caregivers" at some point? I would say that knowing boundaries is also important. Do whatever you feel you can and remember... all institutions are not bad. Some provide excellent care. There are also "surrogates" who can provide help.

Okay… let’s talk about surrogates. How does that work in the real world? There were several stories in the book from friends and relatives that provided the care. Are there professional surrogates – not health care or hospice, but companies that provide this? Is this going to be another trend caused by the aging babyboomers? Considering the story today concerning Mrs. Aster and her son’s alleged elder abuse, what would you recommend a family look for in a surrogate?

Roberta: Yes- there are professional surrogates. It could conceivably become more widespread as baby boomers retire distances away from their elder family members. If a family wishes to consider a surrogate- it is important to meet the person, try to obtain any references if they are available and certainly not abdicate all responsibility to the person providing the care. Checking in frequently and noticing any changes in the care recipient is critical.

I heard a story about a fellow who was 79 who went to visit his wife in the nursing home everyday. She had Alzheimer’s and didn’t recognize him any more, yet, he kept going because he loved her and meant it when he promised “in sickness and in health”. That’s commitment! What about keeping love alive when romance isn’t possible?

Roberta: Keeping love alive when romance is not possible is not easy, but spouses with whom I spoke, offerred some suggestions:

A-Hold on to the positive.

B- Try to maintain some of the same activities you did before with a new flexibility

C- Create new activities from chores- cooking etc- whenever possible.

D- Always say "I love You" even when you're not so sure you feel it.

E- Seek respite and support. Keep social networks going.

Nothing here is a magic bullet- these are only some thoughts.

Thank you so much, Roberta, for taking the time to talk to me about this deeply affecting subject. I pray this has helped someone who is facing this challenge. For me, it has been trying, challenging, maddening, joyful, precious and such a blessing to my soul.

Caregiving from the Heart: tales of inspiration
By Roberta Cole and Riki Intner
Elders Academy Press, July 2006
ISBN # 0-9758-7446-2/ PRICE $19.95

Roberta Cole
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