Caregiving a cleft kid and an Alzheimers patient – I

Caregiving a cleft.

Older woman holds cleft lip child in her lap. Younger woman looks on.

Family copes with child

My mother’s consisted of intense involvement with me during the first three years of my life and then further intense involvement during my preschool and elementary years when my unclear speech and susceptibility to bullies needing addressing. She then had a respite punctuated by caregiving around special needs I had –more surgeries,  orthodonture, a bad heart diagnosis. All this extra care was on top of the normal caregiving a stay-at-home mom in the ’50s and ’60s was expected to give. She had three kids and a husband to look after.

While many cleft kids may not require intense caregiving these days, there are plenty of other disorders requiring it. With increased longevity among a huge number of  baby boomers, later-in-life ailments are on the rise. As a result, many people find themselves caught up in the caregiving role.

For this reason, I’m taking the unusual step of sharing a recent article in its entirety. 

Caregiving an Alzheimers patient.

Jane Brody’s  New York Times article “Caring for the Alzheimers caregiver” contains valuable

nuggets.

An unsung hero. 

“Paul Divinigracia does not consider himself a saint. But to observe how he cares for his wife, Virgie, now 11 years into Alzheimer’s disease, you might think otherwise.

The Divinigracias celebrated their 50th anniversary in August. At 75, Mr. Divinigracia still calls his 87-year-old wife “dear,” and he clearly means it, even after he has answered the same question a dozen times within a few moments. Patience, he said in an interview, is the watchword of his existence.

“We laugh a lot — laughter definitely helps,” he said. “I make jokes out of many of the problems. Maintaining a sense of humor enables me to stay in balance.”

Lest he run out of things to laugh about, he and his wife watch amusing programs on Filipino television (both are natives of the Philippines). “It reduces the tension,” he said.

But there is no question that being the full-time caregiver of a family member with Alzheimer’s or any other form of dementia requires constant adjustments. New challenges frequently arise. Mr. Divinigracia is trying to persuade his wife to bathe.

“Sometimes I offer a reward, like telling her, ‘We’re going out for lunch or dinner, and the restaurant won’t let us in unless we smell good,’ ” he said.

Mr. Divinigracia could easily have been the subject of one of the 54 stories in a new book, “Support for Alzheimer’s and Dementia Caregivers: The Unsung Heroes,” by Judith L. London. Dr. London is a psychologist in San Jose, Calif., whose first book, “Connecting the Dots: Breakthroughs in Communication as Alzheimer’s Advances,” broadened her contacts with family and professional caregivers facing, and often solving, everyday problems related to dementia.

She based each of the stories on situations confronting caregivers she has encountered, offering suggestions that could help others in similar circumstances.

The challenges include convincing patients or other relatives that something is really amiss, that lapses are not only a result of the gradual decline in memory that can accompany aging, as well as keeping people with dementia from slipping unnoticed out of the house and getting lost. (Double deadbolts on all the doors are a common and effective deterrent.)

“I have to be very observant of what’s going on at all times,” Mr. Divinigracia said. “She’s become very obsessive about safety, constantly checking to be sure all the doors and windows are locked and plugs are unplugged, and wanting to take out the garbage.” One day, after putting garbage in a pail outside, Mrs. Divinigracia forgot where the house was and had to be brought home by a neighbor.

The Divinigracias often visit family. Their daughter has taken to putting notes everywhere in her home, reminding her mother what to do and what not to do. “She does read the notes and follow the instructions,” Mr. Divinigracia said.

“Caregiving is an act of love, even for paid caregivers,” Dr. London said in an interview. “You put so much of yourself out there all the time, especially with Alzheimer’s patients. The average span of the disease is seven years and it can go on as long as 20 years, and the challenges only increase with time.Dr. London worries a lot about the stress on these caregivers, and rightly so.

Your thoughts ?

More about the heroic Mr. Divinigracia  and caregiver challenges in my next blog . . .  

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