Collectively Wise

Collectively Wise

Family and community are the front line of the health care system.
High quality care giving can reduce the incidence of "lifestyle" diseases and improve outcome.

What's your story?

Choosing a Care Facility

Aunt Florence was recently widowed, and wanted to stay in the home she’d shared for more than a decade with her second husband. It was isolated and more than two hours drive from her two nephews. (Her own children had disowned her at her remarriage. They would not even discuss their mother’s care with their cousins.)

Then there was the really BIG problem: Florence was clearly suffering from dementia with significant memory loss and paranoia.

In theory, the solution was simple enough—find a care facility for Florence. But she insisted on staying in her home. When she fell and broke her hip, there was no question of her living on her own.

Are you facing a similar dilemma, trying to decide whether to move your loved one, and if so to what type of facility?

Here are some suggestions to help you sort out the choices. They come from Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions by Paul and Lori Hogan, founders of Home Instead Senior Care.

Teen with Parent Injured in Accident

[Guest Post]

Hello everyone, I'm a twenty year old boy from Lancaster pa. I chose to respond to this blog for many reasons,the fact it's a good way to reflect on ones experiences, and that this circumstance has touched my life as it has so many others. Firstly, my story begins when i was just a little fourth grader. My father was in a horrible car accident that left him in the emergency room. After days of not being aware whether he would live or die the doctors assured us he would live but that he would lose his leg, and the other was severely damaged.

It was months before he would return home but when he did it was difficult for all my family. My father could no longer walk and was in constant pain. The doctors had prescribed him Oxycontin, though this did little to heighten his mood. The very first things we did to help him were just all the basic necessities, helping to feed him, and move him for the restroom and bathing. This would go one for months.

Mom and I and Cancer live in Memphis, Tennessee

[Guest Post]

Mom and I and Cancer.  I live in Memphis, Tennessee with my brother.

My mother had breast cancer for more than three years. It started in the summer of 2006, she started getting some lumps in her breast and she wouldn't tell anyone. Instead she would keep it a secret and would start using herbal remedies that smelt awful, and then she started to seem very depressed and would ask me to pray for her. I didn't know what she wanted me to pray for, she only told me "just pray for me." It got to the point that I knew something was wrong and I confronted her.

September 2007 she went to a free clinic and was diagnosed with breast cancer. For one year she pulled off the "I can take care of it myself" attitude until she developed a second tumor inside the wall of her uterus and she couldn't walk well. I had to lay her down many times and cook for her although she really wanted to work around the house herself.

She still decided to do nothing about her condition and we my brother and I finally had enough. I urged her to go find a specialist, my brother even agreed to pay if insurance could not cover the whole cost. She found a good breast cancer specialist, and with insurance covered she was scheduled for surgery. The day of her surgery, we all waited patiently at school to see how she was doing.

Turns out she didn't go.

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.

Caregiver Information Searches: The Good, the Bad, & the Ugly

[by Joanne Reynolds]

I just spent an hour on-line looking for resources cited in a recent article on caregiving. It wasn’t pretty. Only two of the six sites listed could be located with the URL (site address) provided. I spent a whole lot of time and energy trying to find the other four.

Have you found yourself in this frustrating circumstance lately?

Caregiving can be tough enough on its own. But sometimes it feels like you’ve run into a brick wall when trying to find support for yourself: a respite volunteer so you can take time off, information on your patient’s disease or condition, or simply resources that are available in your community or region.

There are resources out there, it’s just a matter of finding them. And that’s the problem. Caregivers are not overburdened with free time, so endless mining expeditions to find a source of help becomes counter productive. When you’ve got limited time, you’re not going to waste it on web searches or phone calls that only lead to more web searches or phone calls.

What follows are a few details of my searches, with the end results, which can save you caregivers precious time:

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.

A Family Experience Caring for a Young Autistic Girl

[International Guest Post]

I live in a joint family and am taking care of an autistic girl child who is ten years old. She was two years old when her mother (my sister-in-law) took her to a pediatrician who diagnosed her as an autistic child.

An autistic child is very special and needs special care. Though they look normal, they have very unusual behavior and speech pattern. But even before the doctor could diagnose her mother felt that something was wrong with her.

She started sending her to a special school. She would just walk around in the class, wouldn’t listen when told stories and didn’t play with other children. She would repeat the same thing again and again for a long period of time and express her needs rather than her emotions. The problem started when the school was not using appropriate methods and her condition started deteriorating. It was always very stressful for my sister-in-law to look after the child. So I decided that I should also help her in taking care of the child so that she is relieved of the stress and became a caregiver for her day to day care.

T'was the Night Before School and All Through the House, Tomato Paste is Shampoo...

Here we are.  It's the night before school starts.

Forms are not filled out.  Only 2 of the three kids have new backpacks, and there's nothing planned for dinner. 

We hit the ice cream social at 4, and the younger girls have their teachers and room assignments.  The oldest brings home a stack of paper for us to to go through and fill out.  "Check here to donate more than you should."  "Check here to feel guilty."  Going to the fundraiser this fall?  Yes/No.  Buy a sweatshirt?  Cool kid?  Yes/No.  Cotillion?  (I tell me daughter she can pretend to be a debutant.  She rolls her eyes and walks away.)   Chicken dinner on Wednesday for $9/head?  9x5=$45.  Yeah, I guess...

We have yet to initiate the treatment.

Daddy is frustrated.  How can little girls care so much about green hair, he wonders.  But they do.  My 12 year old has the whitest hair of anyone in her school.  ...Well, she used to, anyway.

He thinks it's a right of passage.  "Tell everyone you spent the summer at the pool.", he tells her, thinking that that will be enough.  She's not so sure.  This has happened to us before.  The super blonde hair sucks up the combination of chlorinated water and copper pipes and becomes a not-at-all subtle shade of NEON GREEN.

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.

A Perspective on Prayer and Recovery (in Hinduism)

This is about My friend's son. He is just 6 years old. Let me introduce myself first, my name Rikesh. I live in a small town in India.

My friend's name is Mithun. He is married to his wife for 8 years now. After their marriage they first (had a) son in the year 2004.They kept his name Krishna, which is the name of Hindu God. He is so loving, cute n sweet. I use to visit them quite often.

Everything was going just fine (but) then one day Krishna fall sick all of sudden. Fever kept coming continuously for three days. Every one was worried they took him to doctor but it did not help. When I landed up to their place to see them, I was shocked to see his condition. I referred them a doctor who is my friend, Dr. Sudhir. He is child specialist .We went to see him same day then he advised us to admit Krishna in the hospital.  On hearing that, my friend's wife started crying. We consoled her everything will be fine.

Mother of 5 Leaves Children to Care for Her Alcoholic Mother in Thailand

I am single mother of five. I had to leave my children in Houston, Texas on November 3rd, 2007 and move to Udornthani, Thailand, when I found out that my mother was ill and that she could no longer care for herself. At first, I thought it was an illness that was unavoidable, but when I got here, I found out that she was sick because of alcoholism. The type of alcoholism that you have to drink to just get up in the morning. I took my mother to the hospital and watched the doctors put tubes and IV’s in her. It was the most heart breaking sight that I ever saw. My father called from Texas and it was my first time hearing him cry. All he asked from me was to make sure that I do whatever it takes to keep her alive.

I sat by her bedside for 13 days, watching her in agony, seeing the tears from her eyes. There was nothing I could do to stop her pain. When they finally took out the tube from her mouth, she promised me that she would never drink again. She told me that she was “scared”. She is my mother and I believed her.

Today, on August 7th, 2010, at the age of 37, I sit here and watch my mother each day, drink herself into nothingness. It hurts to watch her kill herself each passing day. Needless to say, she never kept her promise. During the day, I have to make sure she eats, takes a shower, change her clothes and clean up after her. I am not talking about cleaning dishes, washing clothes, etc. I am talking about wiping up her vomit, urine and her feces.

Caring for a Sister with Breast Cancer, In India

The following is a personal story written by a young woman in India.

I am a female aged 34 years residing in India. In this article I try to recollect and narrate my experience in taking care of my elder sister who is suffering from breast cancer.

It was about two months ago when she detected a limp on her right breast, I took her to the nearest hospital. After carrying out the checkup, the doctor diagnosed that it is the beginning stage of breast cancer and it requires a detailed medical examination for which a specialist doctor is to be consulted. Immediately, I took my sister to the Regional Cancer Centre located about 200 kilometers away from our residence. There, after carrying out a detailed examination and also several lab tests, the doctors advised us that the affected breast is to be removed for which the patient has to be undergo a major surgery. I immediately arranged the money required for the surgery and after one week the surgery was done. After one week, she was discharged from the hospital and she is now taking rest in my house, by continuing the medicines prescribed by the doctor.

From the day on which the surgery was done, I am taking care of my sister for all her affairs. Initially she was suffering from severe pain and she was not able to even move a step forward and it was with my help that she could take food, take bath, etc. Still now, I am always with her as a full time bystander.

Sharing the Care: Caring for loved ones near and far

Judy’s mom lives out of state, and is in failing health. The good—and bad—news for Judy is that her mom is living in a “Granny unit” apartment above her sister’s garage, so care is literally steps away.

But Judy suffers from guilt because she’s not the one carrying the burden of her mom’s care. “I call once a week, and sometimes I have to bite my tongue to keep from offering my ‘brilliant’ advice. I know my sister’s in it every day and probably has thought of or tried all the things I want to suggest. I just don’t think she’d take it very well if I wade into these issues from 1,500 miles away,” Judy says.

The same issue arises when Judy goes to visit, only it has a bit of a twist. Not only does Judy not want to come off as “the outsider arriving to save the world,” but she has begun to realize that her mom puts on a show of being stronger and healthier than she really is when Judy’s visiting.

The bottom line is that no one really is saying what’s true. Judy keeps her advice to herself, her sister isn’t talking about her real levels of caregiver stress, and mom is trying to convince Judy that she is well when she isn’t.

Our Summer Escape: California Camping

This post was originally published in the SVMoms blog, in anticipation of summer.  As summer winds down, this is what we've done!

We *love* camping.  We stuff the minivan full of gear and food and head out of town, every chance we get during the warm weather months.  It's a way to trap the kids.  No playdates, no electricity, no sports, no work, no homework.  Get far enough away, and even my iPhone wont get signal.

The natural beauty of California is astounding.  The coast is breathtaking, the mountains are beautiful.  The lakes and bays are accessible and fun.  The rocks, trees, blue sky, dirt and sand call our names.  As do the coyote, deer and bears.

Thank goodness for the California State Parks.

Personal Story, Dementia in India: Family is the Front Line of the Healthcare System

The following is an anonymous personal story written by a 39 year old woman in Kolkata, India.

I had the experiencing of taking care of my grandfather who is 90 years old and very sick. We in India still believe in the joint family system and so the family becomes the first healthcare provider to any other member who is sick or old. The elderly and the sick are given good care and the emotional support they get from the family heals most of their problems.

My grandfather is very aged but could still do his daily chores all by himself. All of a sudden, my grandmother died of heart attack and from the very next day onwards, he showed signs of restlessness and started behaving abnormally. He could get the emotional support from her and it was lost all at once. His daily activities changed. He used to get up very late after repeated calls and would insist on eating a particular breakfast if anything else was served. He behaved like a child and became more stubborn. Slowly his memory and power of concentration started diminishing and a stage came when he could not recognize any family members.

Our family physician suggested that he should be given emotional and moral support and these conditions were very normal for a person of his age. So we the family members took turn every month to take care of his health and well being. I was given the chance to take care of him as I was a healthcare professional.