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.
How often have you noticed something that needs to be addressed in order for your loved one to have the best care? Probably almost as often you have felt mentally, emotionally and physically exhausted.
The key to dealing with these situations is to be prepared, to be as informed as possible. Armed with the relevant information you will feel empowered and confident.
These eight practical suggestions will ensure quick access to the records you need to be effective in your dealings with medical professionals and bureaucrats when issues arise.
1. At every appointment, take notes and always date them.
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Be sure to include a list of all participants. At meetings with medical practitioners ensure that you record key terminology and associated terms, and any recommendations that are made. This applies not only to specific medical concerns but also to diagnosis and treatment options. I kept these notes in one notebook making it easy for me to quickly locate relevant information. This helps immensely if you should decide to question a medical decision.
2. Get copies.
Always insist that you receive any report that is generated concerning your patient. I found that doctors were usually willing to have an assistant photocopy documents for me. I even received ECG printouts when I asked for them.
3. In the Province of British Columbia you have the right to a printout of any lab test results requested by your doctor. However you must tell them you want a copy when you submit the requisition to the lab. The lab will then either give you a card with the internet address where you can access the results, or if you prefer, ask to have them mailed to you.
4. Ask the pharmacists to photocopy all original prescription requests from your doctor. This allows you to compare the dosages indicated on bottles or vials to what the doctor actually prescribed. It also enables you to check prescriptions against previous ones. On rare occasions this additional check helped me to determine, with a pharmacist’s assistance, that the prescription filled was either inaccurate or inadequate. I found that Costco pharmacy was always willing to go this extra distance to ensure my peace of mind.
5. Don’t back down. If you have gathered all the information and know that you are right, don’t yield. Always be calm and courteous, but insistent. Do your research. If you are lucky enough to have a nurse or doctor in the family or in your circle of friends, discuss the issues with them. They may put your mind at ease with the medical advice you have been given, or they may indicate possible strategies for intervention.
6. Phone calls to professionals are most effective when you maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands! Use phrases like “it seems that this is the case…”, or “is it not the case…?”, or “could you please explain to me…?”, or “it seems to me…” as opposed to “you made a mistake…”, or “you lied…”.
7. In the case of bureaucratic delays or rejections, where time is crucial to ensuring the well-being and best care of your patient, state that if necessary you are willing, while be it reluctantly, to go to wider public resources: the local newspaper or TV station.
When writing a letter always copy to your MP or MLA and state that you are doing so. Assert and reassert the facts. When you have the evidence to back up your position, you need never back down.
8. You are your loved one’s lifeline. Never forget that. One of a caregiver’s first and foremost endeavour is to advocate for those who are under their care.
Margaret Jean.
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.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.
Caregiver Me 