Collectively Wise

What to Do About Mom and Dad

[by Joanne Reynolds]

Recently, ABC World News with Diane Sawyer focused on caregiving issues as part of its on-going series “Families on the Brink.” Entitled “What to Do About Mom and Dad,” the segments looked briefly at a wide variety of issues facing caregivers of aging parents.

I’m sharing a summary of it here for those of you who may have missed it, and for those of you who are in other caregiving circumstances. Some of what was broadcast applies to all caregiving. If you’d like to see more, visit www.abcnews.com/wn .
The first segment featured a round table discussion between author Virginia Morris (How to Care for Aging Parents), geriatricians Dr. Marie Bernard and Dr. Neil Resnick, and Martha Stewart, the lifestyle maven who has founded the Martha Stewart Center for Living, a senior health care center within Mt. Sinai Medical Center in New York City.

They concluded that conversations with your parents about aging, care and end-of-life issues has to be started early, before there’s a crisis. Ask these types of questions and listen, carefully, to the answers:

• What are you concerned about?
• What are you afraid of?
• What do you hope for?

Falling into Alzheimer's

[Anonymous Personal Story]

One of the hardest things my family ever had to do was watch my grandfather fall into Alzheimer's.

In some ways, we may never recover who we were.

My grandmother went through a period of enshrinement after he died, putting up pictures of him at his worst all over so she could sit and cry when she saw them. It's been almost a half a year since he passed away, but we lost him two years before that, for the last two years, he had not been himself. Not the grandfather we all knew.

Before the Alzheimer's, he was a retired physicist who went to a weekly singing group, helped tutor us and other local kids in math and science and donated more then forty hours a week at tax time to our local branch of the New York public library system. He never just did something for anyone, he made us work through how to do it while he helped and taught with other examples.

Family Caregiving in Egypt

[Anonymous Guest Post]

I would like to share my experience with my both grandmother and grandfather.

I live in Egypt ( male 32 years old)which is a nice country by the way. I live in a city that is on the sea shore directly. I find it dramatically that the weather here is almost fine all the year. About caring of my grand mother and my grand father, it was a hell of experience.

First of all lets talk about my grandmother. She had never went to a doctor in her early life, but later when she got older she began to suffer from diabeted milletus which is a disorder of glucose metabolism that lead to hyperglycemia due to lack or resistance of insulin in the body. This disease need treatment with either insulin or oral hypoglycemic to decrease the rising blood sugar. In our country we call is in or language "sugar", this name refers to the pathology of the disease.

Affectionate Daughter In-Law Provides Proper Care

[Anonymous Personal Story]

This narration is about my mother who set up a unique example of sincere and dedicated care, she took of my grandmother; i.e. her mother-in-law.

There is a general notion about the adversities this relationship goes through. But my mother defied all the prejudiced sayings and wholeheartedly took proper care of my grandma. Our family is a nuclear kind, where I used to live with my young brother and mum and dad. Our grandmother use to live in the village at her native place. But after the demise of grandpa, she was left all alone.

I used to lie down next to [my father] and take care of him, as if he was my child.

Illness, in any form, often leaves a person in predicament . The condition of those who suffer from chronic diseases and cannot take care of themselves is so dissuading that the patient mostly prefers to refrain from normal activities and live in a state of isolation. In many such cases, the affected are left in the lurch, with their own family members either unable or unwilling to provide the much-needed care. For those who reach the terminal stage of their life owing to illness, there is nothing to replace love and care as they largely help to soothe their emotions and thus offer peace amid bewilderment.

The experience that I have had in taking care of my father for an extended period of over five years before he ultimately died in 1997 in the Southern Indian metropolis of Chennai (formerly `Madras’), when I was 28, is not only unforgettable but also something that I would like to share with the society, hoping that it educates care-takers of many other parents, struggling elsewhere in the world, to shower love and affection on them in times of such serious health crisis.

Soon after my father was diagnosed with acute renal failure on account of multiple stone formation and put on dialysis (after one of the kidneys that was severely punctured by the stones was removed), he looked physically very fragile and mentally more sick, demanding round-the-clock attention from the family to carry on his day-to-day activities. His bones were so brittle that a slight fall could have led to multiple fractures and he was also suffering from sudden loss of memory. Most of his problems , were due to his decades-old smoking habit, supported by occasional drinking, that surprisingly died down only after Doctors warned him of his nearing death.

Safety and your Patient

  [By Joanne Reynolds]

Mary posted a question to an on-line caregiver group that I want to share with all of you:

How do I keep my parent, who’s suffering from dementia, safe while I’m at work?

Here are some suggestions which may apply work equally to elderly loved ones as dementia patients. They are from the Alzheimer’s Association publication, Staying Safe:

Be sure to have working fire extinguishers, smoke alarms and carbon monoxide detectors in the house. Test them regularly.

If you are out of the home during the day, use appliances with an auto shut-off feature, such as coffee pots.

Caring for Grandfather with "Old Timer's Disease"

[Anonymous Guest Post]

He first started forgetting his way around the house so every morning like clock work I had to wake up and make sure my grandfather could find his way to the kitchen or restroom. The emotion my grandfather and my family was going though was worse then any physical. At night my grandfather would cry in the corner of his room because he was unable to remember large portions of his past.

I spent every night trying to counter act it by going through his photos of his life. I would explain to him each picture and what he had to do with each picture. I still till this day do not have a clue if it really help ed or not but I hope in my heart that if anything it at least gave him some peace of mind even if only for that night.

Every day routine began to get harder when my grandfather soon forgot who I was and would lash out as if I was attacking him. The tears pouring from my face was not even enough to help him remember, the only thing that made...well remember who i am but at least believe what I was saying was the truth, was this locket I had to give him each time that had a picture of the two of us in it. After the first year things got overwhelmingly worse.

Mature Man Reflects on Caring for Father with Throat Cancer

[International Guest Post]

I live in Trivandrum, the southern tip of Indian peninsula. I am sixty years old male. I was working in the State Forest Department making me to stay a long period away from home where my father lived. He was a widower and house keeping was done by an elderly lady who was with us for a long period. He was then seventy years old and very healthy. He used to narrate us the gymnastic experiences of his youth and even at this age his physique was good. I didn’t even remember him bed ridden even for one day.

One day while at home he complained of a sore throat that does not resolve even after three weeks. I advised him to gargle with salty hot water, which I used to cure a sore throat during acute cold. After one week I got a telephone message from him that the ENT specialist in the local hospital has advised him to have a thorough check up at the Medical College where more facility is available. He requested my presence during the checkup. After a preliminary medical checkup the doctor has ordered for a series of medical tests. He has fixed a date for laryngoscopy. A laryngoscopy is an examination by use of a tube with a small lighted camera. A cranial CT scan was also conducted. Studying the results he has further gone for a biopsy. It took altogether about one month from the preliminary tests to determine it was a throat cancer. He explained to me that the cancer has affected the vocal cords and voice box.

Maternal Grandfather Diagnosed with Alzheimer's

[Anonymous Guest Post, by a 46 year old woman from Alabama]

In 1998 my maternal grandfather was diagnosed with Alzheimer's. I am an only child and both my mother and grandmother had passed away in 1993. My mother was also an only child, so that left me to care for my grandfather, who was alone, except for a few nephews and nieces.

I am 46 years old, female, and live in Alabama. My family, on my mother's side, is very scattered out and I'm not close to very many people on that side. I am also married and the mother of a son with Asperger's Syndrome, who was only two years old when my grandfather was diagnosed. Needless to say, I had a very full plate for a number of years.

My grandfather lived by himself in a trailer on property owned by one of his nephews. He started showing signs of dementia several months before the diagnosis. He would forget something you said to him moments before, and started getting up in the middle of the night and wandering around the yard.

I lived about 15 miles away from him, so didn't see him on a daily basis at that point. Once the Alzheimer's diagnosis was made, it was evident that he needed more care than we could provide him ourselves. We had to make a definite and speedy decision after he got into his car one morning and was gone for 10 hours. He did come back, but we had no idea where he had been at that point. He said he went out to "look for a job". At that time, my grandfather was in his 80's and had been retired for 20 years. Something had to be done for his safety.

The Driving Thing - As a caregiver, what can you do when it may not be a good idea anymore?

Three women waited patiently for their respective turns to talk to me following a workshop this summer. As it turns out all three had the same dilemma-- what to do, if anything, about taking the car keys away from aging parents.

• For one, it wasn’t the fact that her Dad was coming up on his 99th birthday and still driving. It was that she felt her Mom was asking him to “drive more than he should.”
• For another, it was the emotional issue of role-reversal in taking away Mom’s driving privileges—the child becoming the parent.
• For the last one there was no doubt or hesitation about what needed to be done, her question was how to do it.

This is one of the questions I hear regularly in my workshops as I travel around the country. It’s a tough one to solve because there is so much emotional power tied up in the independence of being able to drive. The issue is further complicated when the person in question lives in an area where public transportation isn’t good.

If this is your caregiving dilemma, it may help you to pull the problem apart into bite-sized pieces:

First step—determine if your parent’s driving is hazardous.