My Un-Saintly Reality: A Caregiver’s Perspective

By Juanita Wellington

I am a caregiver for my husband, Bob, who has early stage Alzheimer’s disease.  I am not a peripheral actor in this disease, eventually it will take over my life nearly as much as it will Bob’s. And, along with many other caregivers, I will be working at this extremely demanding and heart-wrenching job 24/7 with no pay, thus saving the economy huge expense.bob_juanita-wellington

We were fortunate to be given a diagnosis early enabling us to begin making changes. We are grateful because we know not everyone receives the benefits of an early diagnosis.

Bob and I were able to make changes together for the future. Bob began taking medication and adopted a healthier lifestyle; I quit my job to spend more time together and to focus on his dementia issues.

We made important planning decisions. We contacted our insurance company and made adjustments they suggested, like changing our driving patterns so Bob could continue to drive as long as possible. We also got our legal and medical papers in order.

We made compromises. We moved our world travel plans forward but gave up our long held plan to move to Arizona as this would have been too stressful for Bob to adjust to.

A year ago we proactively moved to an apartment in a retirement community which gave Bob more time to adjust to the change and provides more social interaction and a support community. This will make me able to keep him home longer.

Since Bob was diagnosed 5 years ago, I have observed a gradual worsening of ability to focus, increasing memory problems and slower processing of verbal and written information. My husband has become less able to anticipate the potential consequences of his actions and is less willing to try new things. I attended numerous workshops to learn about caregiving skills, or as I call it “How to Become a Saint”:

  • Always be patient. Use a relaxed tone of voice. Don’t argue. Use positive body language.
  • Be flexible.  Establish routines. Don’t correct. Stay calm. Use positive facial expressions.
  • Provide structured activities. Don’t criticize. Maintain eye contact.
  • Be cheerful. Speak slowly. Be forgiving.  Don’t take his behavior personally. Don’t hurry.
  • Maintain his dignity. Be well rested. Etcetera, etcetera, etcetera…

My Un-Saintly reality is that our roles are changing from a partnership to parenting. I have feelings of guilt because I regularly fall far short of the Sainthood I’ve learned. I have love and admiration for the courageous way that Bob is coping with the dementia but resentment at having to take on ever more tasks and responsibilities.

I am grieving over daily losses of conversation, companionship, intimacy, freedom and dreams of retirement bliss. Dreams have been replaced by anxiety about the financial costs of treatment and care. Lack of privacy and time for myself often makes me feel marginalized, under-appreciated and taken for granted by others. People regularly ask me how Bob is doing.  Almost no one asks me how I am doing.

Caregivers cannot be forgotten. Whatever we can do to improve the quality of life of the caregiver will have a direct impact on the quality of care provided to our loved ones with dementia.

November is National Alzheimer’s Awareness Month and National Caregiver Month. It is a time to remember and care for those who care for others. No one should face Alzheimer’s alone.  If you are caring for a loved one know a caregiver, the Alzheimer’s Association is here to help. Visit alzwa.org today or call 1.800.272.3900.fb_cover_nadam2016_02.jpg

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