Caregiving Journal

When I was taking care of my Mother, I developed a caregivers journal. I bought a 3 ring binder and a package of tabs. This book was designed to be grabbed in a medical emergency as well as a day to day record of mother's care. These were the sections I included.
1. Emergency Data - Phone Numbers - Drs, family, friends, caregivers, Programs, everybody I dealt with in regards to Moms well being. I also included a prepaid phone card in cases of emergency caregivers could reach my sister and other family members if I was not there.
2. Calendar with appointments and events.
3. Mom's Profile - Her story. What she liked to eat, stories she liked to hear, how to work with her, strategies to use. Things to be aware of mood shifts. What medication she was taking. Current photos - especially when she was wandering. Side effects to watch for. Music she liked to listen to. tips for safely getting her out of chairs, bathing her and later making sure she had snacks and lots of water to drink. Things she was still able to do and things she needed cue-ing with. I put enough current information, that if for some reason I was not there medical personnel and my sister Rita would have enough information to know what was going on.
4. Medical - Current medication, dosage prescribing physicians. Pill schedule. I included prescription and nutritional. Any reactions we had seen. I also included notarized medical permission forms for the people I had selected to be able to make decisions in an emergency. I made a copy of her medical insurance card.
5. Daily Record - This was kept by each caregiver including me: Mom's current moods, how well she ate, how much water she had drank, if she had been incontinent or constipated. Funny incidents, happy incidents, what they had done that day for activities. What was working what wasn't.
6. List of caregivers- names, numbers, times they preferred to work.
7. A copy of mother's living will. My attorney's name and the fact that my sister would have guardianship if something happened to me. (The original documents were kept with the attorney and were part of my will.) I wish I had put the location of the Power of Attorney I had in this journal. When I was hospitalized no one knew where it was. I had to tell Rita, my sister where it was. It was very fortunate that I was able to talk and eventually remembered where it might be. She needed the Power of Attorney because I was given narcotics during my hospitalization and legally could not make decisions.
I put this together so it was portable and had information that would assist others to make decisions in an emergency if I was unable to do so. It also helped keep everyone who was caring for mother in the loop. What happened before they got there. It helped me to know about mother's day when I came home from work.

It's Time for a Bath

My mother used to love her bath's then AD set in and taking a bath or shower became war. I learned from a friend whose own mother had AD that many people who suffer from Alzheimer's develop a fear of water. Bath time became a huge struggle. My sweet loving mother would yell at me and accuse me of trying to kill her. It traumatized all of us including my two dogs who were pups at the time.

Someone suggested a bath chair that was a little better. What I didn't know was how to effectively use it. When I hired a new caregiver Jeanie showed me a much safer way of giving mom a bath.

1. Put the bath chair so the back is closest to the faucet.
2. Have mom sit down on the edge of the seat. Scooting back so well centered.
3. Then pick up her legs. Swiveling them into the bathtub.

She remained seated and safe during the procedure.

When my siblings and I were little kids and Mom gave us a bath she would hand us a dry washcloth to put over our eyes when she went to wash our hair. So that's what I did with her. It seemed when the water got into her face and eyes she became more frightened. I also made sure the bathroom was very warm, because she would chill so easily.

I learned that bathtub transfer benches are a great bath safety accessory that makes using tub/showers safer. Two of the legs sit on the outside of the tub. This allows for the user to sit on the edge of the transfer bench and swing their legs over then slide over the tub. This alleviates the need to step into the tub. Hand held showers are the ideal companion item for the transfer bench. Also called transfer tub seats, transfer tub benches, shower bench, or transfer tub seats.

I bought the hand held shower at Walmart and installed it myself with just a few tools. The bath/shower chair that we used had a back and was available through a local medical supply store. Some pharmacies also carry them.

I wish that I had been aware of how to safely use the bath chair earlier.

Honoring Caregivers

I was my mother's primary care-giver for over 10 years. I believe that family care-giving is an important story that needs to be told to the rest of the nation. One way to tell the story is the proposed US postage stamp campaign honoring caregivers. The objective of the campaign is to bring awareness of the issues facing family caregivers to the general public, healthcare professionals and public policy officials.

"Currently there are more than 52 million family caregivers (approximately 17% of the population) in the United States. A family caregiver is a relative or friend taking care of a loved one who is chronically ill, disabled, or living with the frailties of old age and no longer able to care for themselves. The services provided by family caregivers represent approximately 80% of all home care services and are conservatively valued at more than $375 billion in 2007."

The U.S. Citizen's Stamp Advisory Committee is considering a U.S. postage stamp honoring family caregivers. There is currently a petition to have a US stamp created to honor family caregivers. If you would like to sign the petition, click on the blue word petition. This will take you to the National Family Caregivers website.