I am not an Alzheimer’s caregiver anymore, but that was my life and identity for seven years until a little over a year ago. Caregivers fight a daily battle for the sake of their loved ones to give them the best quality of life possible.
Ultimately, it is a losing battle. They know that, but they still fight it with all that is in them.
I can testify that fighting this battle day after day can and will deplete you mentally, emotionally and physically. Taking time for yourself is not a luxury, it is a necessity.
During the course of our journey, there were several ways I received respite care (referring to a period of rest or relief for a caregiver). Shortly after he was diagnosed, Byron began attending a day club, “Unforgettable Tuesdays,” for people with dementia one day a week. The volunteers were wonderful and everyone had a great time there. (Understandably, they can only take a limited number of people.)
When Byron began a more rapid decline three to four years later, I realized if I was going to stay strong I needed additional respite opportunities. I was able to hire a caregiver to stay with him a few days a week on a regular basis. Occasionally, he went to a memory care facility that sometimes was able to offer respite care a few hours a day, one day a week, for a small number of individuals.
During these breaks I would run errands, go to the gym, maybe have lunch with a friend and generally just have a chance to catch my breath and rejuvenate. Having opportunities to step out of my caregiver role on a regular basis was critical to maintaining my health as well as my patience and attitude. It is comparable to what the stewardess tells you when you board a plane — “always put on your own oxygen mask first before you try to help someone else put on theirs.”
Unfortunately, finding help is not always easy and usually not cheap. Paying for someone to take care of your loved one can get quite expensive and stretch the average household budget at $15 an hour (generally the going rate).
Without help and resources, a caregiver can begin to feel trapped and completely overwhelmed as the world seems to close in on them and their loved one. They may find themselves deep in the trenches and desperately in need of reinforcements.
Having been there myself at times, I desired to find a way to help others currently walking through this very difficult time with their loved one.
A few months ago I had the opportunity to become a board member of the East Texas Alzheimer’s Alliance. It has been inspiring and gratifying to see the talents and level of commitment these board members possess, as well as their tireless efforts to make a difference in the lives of caregivers.
Led by Kristen Ishihara, president, and Beth Godsey, executive director, the board has been planning and working on a number of projects and different ways to support caregivers and their families to provide the help they need.
The primary goal of the alliance is to provide resources for respite care for family members who are caring for a loved one with Alzheimer’s or a related dementia. Plans are in the works for more respite care opportunities for caregivers, as well as more support groups, day clubs and educational conferences.
We are very fortunate to have this organization working and planning for caregivers and loved ones in East Texas struggling with Alzheimer’s and related dementias.
Here’s how the organization describes itself:
We are an independent 501©3 nonprofit organization operating out of Longview, Texas. We are run by East Texans for East Texans with a staff and board of directors who live in this area. We are not a chapter of or affiliated with any national Alzheimer’s organizations. This means, our fundraising and programmatic priorities are not dictated by a board of directors out of state, or even out of town. Having autonomy means we keep every dollar in East Texas to support you, our neighbors and friends.
Founded in 2017, the East Texas Alzheimer’s Alliance (ETAA) is a vibrant consortium of local community organizations and individuals. The mission of ETAA is to immediately improve the lives of caregivers and patients in East Texas affected by Alzheimer’s disease or related dementias. We place a special emphasis on caring for the caregiver.
We accomplish this by offering caregiver support groups, granting respite care funds, hosting workshops on normal versus abnormal aging, facilitating conferences on how to navigate local medical and financial resources, educating the public on the need to eliminate mental health stigma, and so much more.