Laura, a member of the local Lewy Body Dementia caregiver group, donated the book “The 36-Hour Day” to our group recently. The book’s long subtitle is “A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life.” The authors are Nancy Mace and Peter Rabins, MD, from Johns Hopkins. I’m assuming that the title “The 36-Hour Day” comes from the idea that when you are caring for someone with dementia, a 24-hour day seems like a 36-hour day. For 30 years, this “legendary” book has been highly recommended for family members caring for someone with dementia. The authors address family caregivers directly.
I was away in Arizona for a long weekend, and had time to read the book. I was particularly interested in two things. First, is the book applicable to families where the loved one doesn’t have dementia? I tried to read the book from the point of view of a caregiver to someone with either Parkinson’s Disease or Multiple System Atrophy. Large sections of the book ARE applicable to non-dementia situations as well.
Second, if you aren’t dealing with Alzheimer’s Disease but are dealing with Parkinson’s Disease Dementia, Dementia with Lewy Bodies, the Richardson’s syndrome form of Progressive Supranuclear Palsy, or Corticobasal Degeneration with dementia, would you feel that the book wasn’t addressed to you? The authors succeed in writing a book NOT limited to Alzheimer’s caregivers. Usually the term “dementia” is used. And the symptoms of dementia are addressed — memory loss, jealousy, clinging to the caregiver, hallucinations, anxiety, etc — while the diagnoses themselves are largely unimportant in the book. So, this book has a lot to offer anyone, not just Alzheimer’s caregivers.
If you purchase this book, I recommend skimming it to see what’s there. And then reading relevant sections when a problem arises. The book offers one or two suggestions for things the caregiver can say in any situation. If those suggestions wouldn’t work for you, then asking local support group members what they would do in the situation may be the best approach.
Here are five highlights from the book that apply to all caregivers (not just those dealing with dementia).
#1 General suggestions for caregiving
* Be informed.
* Share your concerns with the person [you are caring for].
* Try to solve your most frustrating problems one at a time.
* Get enough rest.
* Use your common sense and imagination.
* Maintain a sense of humor.
* Try to establish an environment that allow as much freedom as possible but also offers the structured that…people need.
* Remember to talk to the [person you are caring for]. Make a point of telling him what you are doing and why.
* Have an ID necklace or bracelet made for the confused person.
* Keep the impaired person active but not upset.
#2 Every primary caregiver should plan NOW for what will happen to their family member if the caregiver has an emergency and 911 needs to be called for the caregiver. Who will care for your family member when you are in the ER or for when you are in the hospital? How will this back-up person be notified? Does the back-up person have a key to your house?
The authors suggest that if your family member has dementia, the primary caregiver should also wear a personal security alarm so that the caregiver can push a button to have 911 called. And they suggest that the primary caregiver NOW write a “cope notebook” of things the back-up caregiver needs to know about handling the person with dementia.
#3 Every primary caregiver should plan NOW for what will happen to their family member if the caregiver dies first. For the sake of the impaired person, primary caregivers need to have a plan that family members can put into place if the caregiver dies. See a laywer, funeral home, financial planner, etc. to develop this plan. Have a family meeting to discuss this plan. Make a summary of your assets for the person who will take over as primary caregiver. This should include info on the location of key documents.
#4 Every primary caregiver should discuss NOW the future care needed by a family member with a neurodegenerative disorder and how this may affect the caregiver. Develop a plan and discuss this with as many family members as possible. You should consider:
* What kind of care may the person need in the future?
* At what point will the primary caregiver’s physical and emotional resources for caregiving be exhausted?
* Do you have a spouse, children, or a job that also demands your time and energies? What effect will this added burden have on your marriage, on growing children, or on your career?
* Where can you turn for help?
* How much help with the rest of the family give you?
* What financial resources are available for this person’s care?
* What will be left for you to live on after you have met the expenses of care?
#5 Every primary caregiver should anticipate the possible need for nursing home or other residential care. Investigate financial issues and locate one or more homes you like.
If you have read this book before, please let me know how you’ve found it helpful. And, if you purchase and read the book based upon this email, let me know what you got out of the book. There’s also one copy now circulating in the local group lending library (thanks to Laura).