Communicating

I have been pondering the power of communication and isolation. A friend who works in a smaller district told me how isolated she feels; she even shared; "I hardly ever get emails so I never know what is going on elsewhere."

After hearing that I realized I get lots of email at my job and home. I even get email from our car. My husband and I recently bought a new Equinox, it is set up to run self checking diagnostics monthly and then to send me an email explaining the diagnostic results. I feel pretty connected and supported.

That wasn't always the case when I was my Mother's care giver. I often felt very isolated and alone wondering how to best care for my mother and how to maintain myself despite depression and at times feeling overwhelmed.

I was very fortunate to have a very supportive family and a supportive group of friends. I had access to caregivers and respite when I was at work and when I needed to attend workshops and training; as well as occasional nights out.

The resources available on line are abundant; the quality of information out in cyberspace is very good. I would encourage everyone to either investigate an on-line support group or a support group in the community where they live. Many care givers do not have internet access and many others are not computer savy. For these care givers having a community support group can be a real life saver.

Support group members are great sources for real life solutions to common problems. Just being able to talk to others who are experiencing the same problems you are can be very reassuring.

The individual experiencing Alzheimer's is also feeling isolated and frustrated with communicating. Naomi Feil in her book Validation Therapy, Jolene Brackey and her book Creating Moments of Joy as well as many others offer some very sound ways to communicate with your loved one.

When my Mom felt understood and felt included her behavior and moods were more positive. Virginia Bell and David Troxel in their best friends model for dementia care share that most of all people with dementia need a best friend. I think everyone needs a best friend.

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.