It never ceases to amaze me the way many caregivers seem to make time to still stay involved _ it shows a real concern for themselves as caregivers and certainly helps them survive. It's not easy for some, but in the long run involvement keeps you healthy and able to do a better job of caregiving.
This came to mind as I was walking with Ceil Paul, of St. Petersburg, who is a caregiver to her mother-in-law. We were participating in the Alzheimer's Association Memory Walk. The Memory Walk, which is held each year, provides us with the opportunity to support our local Alzheimer's Association chapter so they can continue to provide assistance to us as families and their affected loved ones. The walkers are families, friends, neighbors, service providers and people from businesses.
Ceil is a perfect example of what one person can do right in their own neighborhood to build awareness of Alzheimer's and break down barriers. "I signed up about 20 people with donations, which ranged from $1 to $100, collecting over $700. Even the young people at the high school donated _ along with the principal and some teachers. People are really so supportive. This is a great way to tell people about Alzheimer's disease."
Ceil's mother-in-law, who is 81 years old, has been living with the family for almost eight years. "She is very cheerful and helpful, and her physical stamina is great. She helps me fold towels and dry dishes. I drive her to the Lealman Adult Day Care Center several times a week _ she has variety in her life."
Families are bearing most of the burden of caring for loved ones. More than 70 percent of Alzheimer's victims remain at home, and eventually they need round-the-clock attention. The stress on the caregiver can be financially, emotionally and physically devastating.
Ceil has a healthy attitude about this disease _ she talks and shares about it and keeps people informed. In far too many instances the caregiver and victim quietly fade behind the doors of their home _ caught up in the emotional trauma of this progressive and degenerative disease.
The Tampa Bay Chapter of the Alzheimer's Association, (813) 578-2558, reports more than 65,000 known cases in the Tampa Bay area with more than 21,000 being taken care of by the West Central Florida Chapter Alzheimer's Association in Pasco County, (813) 848-8888. These are only the reported cases.
Alzheimer's disease, at present, is incurable but it is not a normal part of aging and is not something that will inevitably happen in later life.
As caregiver, if you suspect a loved one may have Alzheimer's, then he or she needs to be tested to rule out different kinds of dementia, many of which are treatable or curable. Testing also can rule out memory loss that comes with stress, medications, trauma, depression, physical illness or surgery. It's important to go through a special diagnostic program to evaluate the physical, psychological and neurological well-being of your loved one. These testing programs are offered at places such as Bayfront Medical Center, St. Petersburg; St. Joseph's Hospital, Tampa; Morton Plant Hospital, Clearwater; and the University of South Florida, Tampa. For information on sites in your area, you can call the Alzheimer's Association.
As the Alzheimer's caregiver, in addition to being immersed in day-to-day personal care responsibilities, you also must deal with the emotional impact of watching your loved one decline. It's for this reason you can become the hidden victim of this disease if you don't take care of yourself. This care must take top priority _ otherwise you will fall prey to feelings of being overwhelmed, thus opening the door to loss of self-esteem, depression and hopelessness. Sometimes you don't realize the pressure you're under and the direct relationship between the stress of caregiving and your own well-being.
As caregivers, you're so absorbed in trying to cope with meaningful communication and companionship that you fail to realize the great personal love loss you are experiencing and the ongoing grief that comes with it. To let go of the former relationship and the expectations that went with it is no easy matter. So, reach out for tools which will enable you to do your caregiving better. There is a whole community of care wanting to help you. Also:
Learn as much as you can about Alzheimer's and the related disorders. Share and keep others informed.
Join a support group so you can express your feelings and know that you're not alone.
Don't be hard on yourself if things didn't go as you planned for the day. No one is perfect _ forgive yourself.
Let go. Realistically accept where your loved one is now. Don't have expectations. Recognize your loved one's ability and how that is changing.
Investigate the resources, adult day care programs and support services available to you and your loved one (some nursing facilities have a program to give you a break); plug into all systems.
Remember, caregivers make the present moment count!
Ethel M. Sharp runs Aging Matters, a non-profit network of caregivers. You can write her c/o Seniority, the Times, P.O. Box 1121, St. Petersburg, 33731.