Dementia Aware  

Caring for the caregiver

No disease requires as much informal care as dementia.

Some say caring for dementia patient is like a living bereavement. From the moment of diagnosis, your life changes, your role changes, you are now a caregiver and you are about to embark on a journey filled with many highs and lows.

One minute you may feel happy, in control and calm and the next moment you may start crying and feel overwhelmingly sad, frustrated, angry and helpless.

These are all “normal” reactions to caring for a person with dementia and you are not alone. Being a caregiver is an enormous responsibility, and it can have a detrimental impact to your physical and emotional health and well-being.

As a caregiver, you do the very best you can every day, and some of those days will be good and other days not so good. But, if you want to continue to care for the person with dementia, then it is very important that you look after yourself and accept some help.

What you need to know:

  • Continue with any hobbies/interests
  • Continue visiting with family/friends
  • Follow a healthy diet, exercise and take care of your own health concerns
  • See your doctor regularly
  • Prioritize tasks and know your limits
  • Try to focus on the good things, even on the difficult days
  • Never compare yourself to others; there is no right or wrong way to care

You should take a break often, whether it is a few hours or a few days; time away from caregiving can help you relax and feel energized.

You should connect with the Alzheimer Society of B.C. online at alzheimer.ca/bc or call 1-800-667-3742. Supports offered include First Link dementia support, caregiver support groups and the Minds in Motion program.

You should consult Interior Health if you need respite or assistance with caring for the person with dementia (bathing, medication assistance, incontinence issues) and/or managing behavioural symptoms (aggression, wandering).

Services offered include caregiver support groups, adult day services, nutrition assistance, respite and home support

On bad days, reach out and talk to someone: family, friends, neighbours, your doctor, the local health unit or call First Link Dementia Helpline at 1-800-936-6033.

If you feel you are in danger or the person with dementia may harm self or others, call 911 immediately

Helpful questions to ask yourself:

  • Do I have an emergency plan?
  • If something happens to you, who needs to be contacted? Who can take care of the person with dementia?
  • Document and share the plan with your family, doctor, health-care team and anyone else you want to tell.
  • If you are unable to drive, do you have transportation e.g. friends, taxi, HandyDART?
  • Is there someone who can assist with home/garden maintenance, or housekeeping if needed?
  • Do you require financial assistance, or help with taxes, or completing legal paperwork e.g. power of attorney?

Throughout my 35 years of working with people with dementia and their caregivers, not one person has said they regret being a caregiver; however, many wish they had taken better care of their own physical and emotional health and been more receptive to accepting help.

Being a caregiver is one of the most difficult and undervalued jobs you will ever do, but—if you try and take care of yourself and accept some help—caring for the person with dementia can also be a rewarding experience.

What you need to know about the best aspects of being a caregiver:

  • It provides companionship
  • It can give you a sense of fulfillment and pride
  • It can be meaningful and gives you a sense of purpose in life
  • It enables you to give back to someone who has cared for you
  • It gives you the opportunity to be in the moment with the person with dementia, and to cherish and embrace those moments, however fleeting
  • It will enhance and improve quality of life for the person with dementia

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About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres.

Tracey has appeared on the U.S. radio shows Caregivers With Hope and Alzheimer’s Speaks, and has a dementia column in an on-line medical and holistic magazine, The Scrutinizer. 

She is a the Purple Angel Dementia Ambassador for the Central Okanagan, and sits on the board of directors for Seniors Outreach Society, and is a committee member of the Better At Home program.

She can be reached at [email protected].

The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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