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.

The Dangers of Dehydration

Dehydration can be a deadly threat to seniors. My mother, Elizabeth, was hospitalized because of dehydration. The Drs and hospital were unable to save her. She returned to the care facility were she had been staying and received hospice care for the last week of her life. I still grieve because I question what else I should have, could have done to have had a different outcome.
Preventing dehydration is key to better health for seniors. Janet Mentes PhD, APRN, BC in the American Journal of Nursing – June 2006, talks about why hydration matters:
Fluid balance, the state in which fluid intake equals output, is essential to health, regardless of a person's age. In older adults, adequate fluid consumption has been associated with fewer falls, lower rates of constipation, and lower rates of laxative use, as well as better rehabilitation outcomes in orthopedic patients and reduced risk of bladder cancer in men. 3-5 Drinking five or more 8-oz. glasses of water (but not other liquids) per day has been associated with lower rates of fatal coronary heart disease in middle-age and older adults than drinking two or fewer glasses. 6 And in one study, drinking 16 oz. of room-temperature water before a meal resulted in significantly lower rates of postprandial orthostatic hypotension in older adults who had autonomic failure. 7

There are a number of factors that contribute to dehydration in seniors. As we age our thirst mechanism becomes blunted we do not always realize that we need water. A second factor has to do with the changes to our body make up. From the age of puberty to the age of 39 - 60% of our body weight is fluid. After the age of 60 years old are men’s body fluid drops to 52% and women’s body fluid drops to 46%. Another factor is the loss of muscle as we age. Muscle cells contain more fluid than fat cells. Medication can also interfere with fluid balance.

Alexcia Hawkes in her blog article The Importance of Hydration in Old Age writes about the importance of drinking enough water. I find it amazing that dehydration contributes to falls, constipation as well as incontinence, and can increase confusion.

Nancy Hearn writes about 12 Symptoms of Dehydration. I didn’t know that cartilage in joints are made of fluid and that dehydration adds to joint problems.
Staying hydrated helps keep us healthy and functioning. Here’s to enjoying more H20 in our daily life and those we love.

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.

Hand-over-hand technique

While reading blogs I came upon The Dementia Caregivers Toolbox. I used to put my hand over Mom's hand when I tried to feed her during the late stage of AD. I never new there was a name for this or why it worked. I am sure many people do this instinctively. It is very reassuring when you get validated unexpectedly.

I encourage you go to the Dementia Caregivers Tool box and read the full article. What a great site. Here is a sliver of the article.

The concept of the "hand-over-hand" technique is beyond simple and can be used by anyone to assist a person with dementia in many tasks. How does it work?

You, as the caregiver, put your hand over the hand of the person who has dementia and gently guide them to the activity at hand. If the task is walking, you would put your hand over their hand and slowly lead them down the hall, maybe clasping both your hands around their hand. If the task is stirring the cookie batter, you would put your hand over their hand and "show" them the motion used to stir and do it with them. You can use this strategy for helping people get in and out of chairs, brushing teeth, turning on televisions, combing their hair, you name it.

Elderly Care Waiver Program

Elderly Care Waiver Program helps seniors get help and services to remain in their own homes or community. Each state may have a different name for it but many refer to it as the "Waiver Program for Elderly Care".

The Elderly Waiver (EW) program funds home and community-based services for people age 65 and older who are eligible for Medical Assistance (MA) and require the level of medical care provided in a nursing home, but choose to reside in the community. Counties administer the program as part of the federal waiver program.

What is the Elder Care Waiver Program? Each state has their own program and requirements. The waiver care program can include visits by a skilled nurse, home health care aides, personal care assistant, adult day care, supplies and equipment, certified community residential services (assisted living, residential care)


Who is eligible?
• Those eligible for the EW program are 65 or older, eligible for Medical Assistance, and need nursing home level of care as determined by the Long-Term Care Consultation process.
• The EW service cost for an individual cannot be greater than the estimated nursing home cost for that same individual.

Medicaid State Waiver Program - General Information is a website set up to locate your state's link for further information. Another source for getting further information would be to contact your state's Department of Human Services.

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.