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Finding ways to cope with a recently diagnosed spouse’s dementia

BY PURNIMA SREENIVASAN

Why is caregiving so tough ? Why are there caregiver crises ? Why is there such a need for caregiving ?

In today’s world, we are the first generation to share our planet with more elderly humans than we are with children less than five. 

While the aging population is living longer we must understand that with aging comes the burden of caregiving. This caregiving is not just limited to chronic diseases but also to diseases and conditions where there is no cure, let alone an accurate diagnosis. With this comes the burden of a journey in a caregiver’s life that begins with the very first conversation with a beloved family member, friend or life partner now having the dreaded incurable disease.

What if the condition was dementia or Alzheimer’s ? If we give it a thought for just a moment, the reality will open up vistas that existed, which we never knew before.

What is the momentary realization ? Was it appropriate ? How helpful was the information ? Were we compassionate enough ? Did we understand the phases of a life being hit with the unknown ? Who were we truly talking to ? What did we discover in this context ? These are all things that we’ll be addressing in upcoming articles.

How do we then find ways to cope ? When we are ourselves the receiver, the believer, the giver, the resource. Because it will lay the foundation to better caregiving, in the journey we may face……

  1. Have a non-face to face conversation as a beginning.
  2. Determine the priorities we must respect, in order to respect others.
  3. Reach out for resources in the community. There are organizations supporting the various types of dementia.
  4. Think of the disease as not the person. For the person is the same, it is the disease that makes someone seem and look different.
  5. Take time for oneself. A few minutes or more, depending on your needs.
  6. Plan for help from volunteers, or religious institutions one might belong to.
  7. Concentrate on the well-being of both parties, for medicine is only one percent of the pie.
  8. Make resting, meditation and self-love a necessity as the well-being of caregivers directly relates to the quality of care provided.
  9. Find meetings to attend. Information sharing is helpful in many ways, and can have a profound effect on the alleviation of mental burdens and other crises.  
  10. Keep a personal diary. Recollect and reminisce the positives.
  11. Seek counseling for yourself if needed.
  12. Keep in touch with the providers of a spouse. Meet regularly, and ask questions. No question is incorrect, for a healthy exchange of ideas and finding better solutions.
  13. Have a meeting with extended family. Keeping conversations open can be very useful.
  14. Continue your personal interests, if you can. Personal time well spent equates to a positive attitude to caregiving.
  15. Continue the activities with your spouse as much as possible. Keep the daily routines normal. Change is hard and people with cognitive issues prefer routine.
  16. Bring freshness into the home. Buy flowers, read a new book, join a club.
  17. Be alert to healthcare needs. Keep appointments to continue proper health care.
  18. Follow preventative measures for both yourself and spouse.
  19. Consult with your own provider about any concerns.
  20. Invest in spiritual, emotional, psychological and sociological well-being.

There are a myriad of ways in which one can think through this, however we must remember that being patient is important. No one is similar in any way and we all have to go through this process in our own unique manner of coping.

Our world needs more care, not only in living but also in end of life. Some things are better planned in advance, but planning never means things turn out the way one envisions retirement. Coping with a recently diagnosed spouse with dementia is not a necessity but a part of health care delivery. Making time to address these determinants of life will help us better relate to our communities, countries and our world.

This article is dedicated to Alzheimer’s & Brain Awareness Month.

About Purnima Sreenivasan

Purnima Sreenivasan is a Tribune contributor who is a specialist on aging and the founder of mihygge ( mi-hu-ga, meaning "my life’s simple pleasures" ), an aging health tech startup based in the Bay Area, a company working on making senior living and care accessible, affordable and attainable. She can be reached directly at: contact@mihygge.com.

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