For many of us who are caregivers it’s not only the physical and emotional care of those we love, it’s also navigating the medical and legal systems that can be time-consuming and exhausting.
The effort and time it takes to sort through various systems in order to first determine what resources are available, and then the protocol of accessing them, is a huge part of the caregiving process.
Here are some links which may prove to be helpful in finding and using those resources:
- In the lower mainland, Vancouver Coastal Health provides caregiver support as well as other services: http://www.vch.ca/your-care/home-community-care/care-options/caregiver-support
- Always remember that at your local Hospice Thrift Shops you can usually find brochures outlining the hospice support services listed in your area. For example, here is an overview of services provided by the Surrey Hospice Society: “We serve the people of Surrey and those who access end-of-life care in Surrey British Columbia. Our Volunteers work in the community, at Laurel Place Residential Hospice and in the Tertiary Palliative care unit at Surrey Memorial Hospital. In addition to the supports and services we offer those facing end-of-life, we also provide respite, support and grief counselling to their friends, family and loved ones. Our support is on-going and far-reaching. We provide companions for the journey.”
I’m sure you get the idea. For hospice services in your area, just google the name of your town or district and ‘hospice society’.
Resources are out there. Do take the time to access them. We are so fortunate now to be able to look things up on the computer to get an idea of the services offered and how they might fit our needs. Phoning the agency in question before setting out can also be very helpful.
These resources are intended for your use, so don’t hesitate to find those that fit your needs and go for it!
If you have any information regarding additional resources please don’t hesitate to email me at: firstname.lastname@example.org.
The call came midday. My grandson, Cody, had been in a serious motor vehicle accident. He had a broken back among other injuries and was in critical condition.
In the harrowing days that followed, I was reminded that as well as being ever present for the critical patient, the caregiver has a life of their own which must be managed even while giving much of their energy to the support of the person in crisis.
What to do about Work, and time missed due to caregiving?
The social worker at the hospital advised Bev to apply for Compassionate Care E.I. This Employment insurance benefit is available to people who will be unable to work for a period of time while they are providing support for a critically ill loved one. The benefit, for those who qualify, can be paid for up to 26 weeks. To qualify you will need:
- A doctor’s certificate. The form can be downloaded from the E.I. website, and we simply took the form to the ICU where the doctor signed it for us.
- An ROE from your human resource or payroll department.
- An online application. We learned that VGH has a computer room available to patients and their families. As well as providing computers, the centre facilitates faxes, printing and copying forms.
- My daughter took the forms to a local Services Canada office and left the Doctor’s certificates for reference with her file. Remember to have these forms photocopied so that you have copies in case the official ones go astray.
- To learn more or start your own application go to: https://www.canada.ca/en/services/benefits/ei/ei-compassionate.html
There was also the travel factor; Bev lived about 300 miles from VGH. What options are available to families who live long distances from the hospital?
- Staying with a friend or relative who lives in the area: Fortunately, I live less than 30 miles from the facility so Bev could stay with me. And the transit system is excellent. Although it took an hour and a half by bus and sky train to get within two blocks of the hospital, the stress of driving in and the horrific cost of hospital parking made the transit option preferable.
- Ronald MacDonald Houses are highly lauded if available in the area of the hospital, and if your child qualifies. RMHC houses have an age limit of 21 years in some cases, and 18 years and under in others, in which case Cody being 24 years, his mom would not have qualified for a room. These accommodations have rules and small costs associated with them, and a doctor’s certificate is necessary if you need to stay overnight. See more at the website of the Ronald MacDonald House in your area. Costs are minimal and no one is excluded for an inability to pay.
- Check housing available in the various universities. While they may not be particularly close to the hospitals, they all have excellent bus service to and from the downtown area. Some universities have very reasonable dorm rates in the summer when most students are off campus.
There are many other concerns, of course. But hopefully the info I’ve provided on these two issues is helpful.
As for Cody? He has a strong spirit and a great deal of loving support as well as a wonderful attitude of gratitude. He is healing far better than anticipated.
Being a caregiver is demanding. Sometimes overwhelming. And sometimes? Extremely gratifying.
It can be an emotional roller coaster. For instance, one woman described it as being in “Dementia Prison” with her mother. Another, who cared for a husband whose condition demanded 24 hour care told me, “but I love him so much.”
Many people who are dealing with their loved one’s condition alone often feel drained and exhausted. Being constantly tired and depleted of positive energy can lead to chronic depression.
So, you may ask, what are the positive aspects of this care giving journey?
Consider this: This week, my friend’s only child, her thirty-four year old son, Shaun, died suddenly and unexpectedly.
He had a stellar career in Ottawa, working with the Prime Minister and cabinet members. His portfolios included the Yukon and the three territories. People who knew and worked with him describe him as a gentle, incredibly knowledgeable, go-to guy if you had questions, or needed assistance.
At this young age, he had run campaigns for MPs and provided research for political speech makers. He made and kept his friends: those from university, from campaigning, from his work in Ottawa and from his home in Vancouver, on the West Coast.
This brilliant, considerate and loving young man is no longer with us. Because his passing was completely unanticipated, there was no time to say goodbye, to make a final connection, to reach out to him, or for him to reach out to others. In an instant he was gone, and with him, that cherished light in his mother’s life.
Yes, care giving is demanding; sometimes depressing, sometimes exasperating while at other times hopeful and surprisingly rewarding. But above all, attending to our loved ones, and on occasion our not-so-loved-ones, affords us the time to reflect, and upon reflection the possibility of re-configuring our relationships.
The gift of time is precious. It allows us to say goodbye. It is an opportunity for closure for both ourselves and our loved ones.
A recent article in our local paper featured an autistic young man and his parents’ anguished journey to secure assistance. It took the newspaper offices to finally connect the parents to the resources to which they were entitled.
It is often true that media attention is what is required to find and procure crucial resources for the caregiver’s charge.
For example, after years of trying every avenue to connect with the resources available for his son, the father, Bimal Chand, went to the NOW Newspaper. Their staff connected him with the the executive director of Inclusion BC in the hopes that she would determine what resources the family were entitled to access and why they hadn’t been offered.
The director, Faith Bodnar, referred to the situation as “horrific” stating that there are agencies that supply ongoing support for these situations, and it is infinitely more draining both financially and emotionally when these support mechanisms are not in place.
She described Inclusion BC as an organization that fights for the rights of people with developmental disabilities and their families.Bodnar is quoted as saying that transitioning a youth out of the home should happen four to five years before they turn nineteen. Another spokesperson from Fraser Health said transition services are available from their agency between the ages of 17 and 21.
Services to adults with Developmental Disabilities, a Ministry of Social Development and Social Innovation program identifies and assists with the transitioning of young people whose needs cross several different ministries.
There is only one successful approach to finding and getting the resources available for your charge: Never give up.