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.
Have you ever felt betrayed by or angry at a health care professional?
Perhaps you thought you were not getting complete information about diagnosis and treatment plans. Or maybe you felt certain aspects of the treatment, diet or delivery of medication could be done in a more effective and less intrusive manner.
Many of us who are caring for the needs of our loved ones, who act as advocates in the doctor’s office, at the nursing station and in the face of home care workers can find ourselves suppressing feelings of anger and resentment.
Both the patient and the caregiver may be reluctant to express concerns. Some simply may not know to whom or how they should put their questions.
For those patients and caregivers these unexpressed concerns can cause anxiety and even conflict with those in the health care community whose very job is make life easier for the patient.
Dr. Kuhl, a palliative care doctor, suggest that sometimes doctors and nurses can be so familiar with certain diagnosis, treatment plans, and even the hospital environment that they fail to take into account the patient’s lack of understanding of processes and terminology.
Ask questions, be proactive in your quest for knowledge about your condition, the diagnosis, the treatment plan and what all of this means for you or your loved one.
Decision making should involve your input. Family and friends can assist you in this endeavour.
Why is it so important to understand what is happening and how? Because Dr. Kuhl’s research has shown him that suffering is diminished by both the patient’s ability to understand his situation and his sense of having some control over the treatment path.
This column is inspired by Dr. David Kuhl’s book, What Dying People Want: Practical Wisdom for the End of Life.