Dementia Aware: what you need to know as a caregiver for a person with dementia
Never, has there been a disease that has required so much informal care as dementia. It has been said that caring for a person with dementia 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.
What you need to know:
- You may experience stress and anxiety
- You may feel lonely and isolated
- You may have disturbed sleep
- You may start to ignore your own healthcare needs in favor of those of the person you are caring for
- You may cry and feel depressed
- You may feel guilty
- You may feel anger and frustration
- You may feel that you cannot take it for one moment longer
- You may feel like you are not doing enough
- You may feel like you are all alone and no-one understands
These are just some of the feelings experienced by caregivers. One minute you may feel happy, in control, calm and the next moment, you may start crying and feel overwhelmingly sad or frustrated, angry, 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, it is very hard, and it can have a significant and 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:
- You should try to continue with any hobbies/interests
- You should try to continue visiting with family/friends
- You should try and eat regular meals and follow a healthy diet, exercise and take care of your own health concerns e.g. High BP, diabetes, etc.
- You should see your Doctor regularly
- You should prioritize tasks, know your limits
- You should try to focus on the good things, even on the difficult days
- You should 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 energised
- You should connect with the Alzheimer Society of B.C. @ alzheimer.ca/bc or
1-800-667-3742. Supports offered include: First Link dementia support, caregiver support groups, and Minds in Motion program
- You should contact Interior Health @ interiorhealth.ca if you need respite or assistance with caring for the person with dementia (bathing, medication assistance, incontinence issues) and/or managing behavioural symptoms e.g. aggression, wandering. Services offered include: caregiver support groups, adult day services, nutrition assistance, respite and home support
- On really bad days, please reach out and talk to someone: family, friend, neighbour, your Doctor, the local health unit, or call First Link Dementia Helpline @ 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. This plan should be documented and shared with your family, your doctor, the 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. I know that 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 positive and 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