Long Distance Caregiving

Read Heather's diary.

"Alzheimer's disease has changed my Mom. I greived the wonderful relationship I once had with her, but with the help of the Alzheimer Society of Calgary we've created a new relationship. It's not the same, but it is still nurturing and full of love and compassion."

My name is Heather and I am very acquainted with how Alzheimer's disease can change an individual and a family. My Mom lives on the east coast. She was diagnosed with Alzheimer's disease in 2000. Although I live many kilometres away, I play an active part in her life and support my Dad, her primary caregiver.

Let me tell you about my Mom. She was born in 1925. She is a university graduate, and independent thinker, a wife and a mother to my brother and me. She and Dad have been married for nearly 50 years, and they continue to have a close and loving relationship.

There are many others like Mom who are living with Alzheimer's disease. In Canada, one in 13 people over the age of 65 has Alzheimer's disease or a related dementia and, as the baby boomer generation ages, this number will increase dramatically.

Mom's disease started out subtly and worsened over time. I noticed many changes in her behaviour when I came  home to visit. I became frustrated with the disease, myself and even with my Mom. As she declined, I mourned the strong, loving, independent woman I once knew and became discouraged and disheartened.

That's where the Alzheimer Society of Calgary came in. An acquaintance suggested I contact the Society for help. The Society offers a number of workshops for family members and caregivers and one-on-one support with a registered social worker. I learned practical strategies to help my Mom and positive ways to adapt to our shifting relationship.

I go back every couple of months. I make the most of my time with my Mom and my Dad. We enjoy the precious days, focusing on the things we are able to do together and living each moment to its fullest.

I'm extremely grateful to the Alzheimer Society of Calgary. They've helped me to be a catalyst for change and open the doors to a new relationship with my Mom as her disease progresses.

Your gift to the Society helps sustain vital programs for families and professional caregivers. I encourage you to consider contributing to the Alzheimer Society of Calgary. Their family education and support programs and staff training programs truly make a difference in people's lives.

As a direct result of your donation, you will help others like me make more informed choices and, ultimately, avoid crises through better understanding. Perhaps you will also see your gift as a way to honour the strong relationships you cherish in your own life.

Your contribution will also help professional caregivers of those living in long term care facilities receive the in-depth training that can significantly improve the dementia care they provide.

Whatever you are able to share will make a differece to how families live for years to come.

We cannot prevent this disease from harming the person. But we can do a lot to prevent the disease from wounding the family.

Thank you so much for choosing to help.

Gratefully yours,

P.S. I fully beleive in the work of the Alzheimer Society of Calgary and have become a volunteer to help raise public awareness for Alzheimer's disease. Please visit their Volunteer page to find out how your gift of time can make a difference.

Tips for Long Distance Caregivers

If the person with dementia for whom you care lives in another city or region, here are are some tips for caregiving:

• Stay in frequent contact. This can be done through weekly phone calls, email or by sending mail to your family member, sending pictures and other items that your family member may enjoy seeing.

• Establish a routine with your family member.

• If possible, make occasional visits to your family member with dementia. This will provide you with the opportunity to reconnect and give you some time to do activities that you both enjoy doing. In addition, you can evaluate how he or she is managing with the dementia.

• Determine what kinds of services are available in your family member's region and, with the consent of your family member, arrange some services for him or her.

• Ask others for help. Neighbours, friends and community organizations for seniors can be great resources and can offer companionship to your family member.

• If other family members are nearby you can provide support to each other and potentially share the caregiving activities.

• When visiting your family member make appointments with their doctor and lawyer in order to assist in any decision-making.

• Keep a current file with your family member's personal information and anything else you consider important in your role as a long distance caregiver (i.e. list of medications, health card number, insurance information, copies of legal documents, activities of daily living, personal care, record of the person's normal daily schedule).

• If legal documents have not been taken care of yet you may want to consider putting these in place. These would include a Power of Attorney, a will and a Personal Directive. For more information, visit the Office of the Public Guardian website.

• Learn as much as you can about your family member's dementia.

• If the person with dementia is at risk of getting confused or lost the Safely Home™ Wandering Registry is available nationally through the Alzheimer Society of Canada.

• The Family Education Series available through the Dementia Care Training Centre is also a great way to get informed about the disease and how you can make the most of your moments together.

Considering A Move

Considering moving a family member with dementia to Calgary?

If your family member with dementia is moving to Calgary they can immediately apply for Alberta Health Care coverage once they are in Alberta. You can access and print the application form on the Government of Alberta Health and Wellness website. Once your family member with dementia has applied there is a three month waiting period before the application goes into effect. When he/she receives their Alberta Health Care card they can access community support services such as Home Care. They will do an initial assessment to determine what kinds of services are appropriate. Home Care services include access to community resources and supportive housing options, adult day support programs and support for family caregivers. For more detailed information you can reach Home Care at (403) 943-1920 or visit the Alberta Health Services website.

If you are planning to move your family member with dementia from another province to Alberta, they have to live in Alberta for a minimum of 1 year before they are eligible to move into a long-term care centre or assisted living facility. For more information on long-term care centres visit the Calgary Health Region website.

Other factors to consider before moving or relocating a family member with dementia:

• the person with dementia's needs for independence and familiarity with friends

• your past relationship with the person with dementia

• your needs and your family's needs

• lifestyle differences

• the home environment - space, privacy, safety

• the availability of proper health care

• the availability of publicly funded community resources to help the care recipient

• your emotional, physical and financial capability to deal with the person's care needs

• cost of private care if this is not available or accessible from the publicly funded system

• the impact on your job

• how long you expect the arrangement to last

• the effect of an out-of-province or out-of-country move on eligibility for health care and other services

• the opportunity for respite relief for your and your family (can neighbours and friends provide relief for you?)

Relocation for a caregiver may also be a possibility if:

• community services are not available or accessible for the care recipient

• the physician recommends it

• the person needs 24-hour care or supervision

• the person can no longer live safely at home

You can also call the Alzheimer Society of Calgary for more information at (403) 290-0110 or toll-free at 1-877-569-HELP (4357).