This post is about death, disability, disease and decision-making.
There comes a time when someone is ill or dying, and decisions have to be made about treatment and whether or not to prolong life, or suffering, as the case may be. Who makes the decisions? When? How? Singaporean not only love acronyms, they like things neat and orderly. And so several laws and programs have been put in place to help people do things properly.
Unfortunately, the introduction of these new programs have been muddled up with rules, details and legal jargon. Let me try to demystify it a bit…
Last will and testament
This is obvious. This is a legal document determining how to distribute one’s worldly possessions upon death.
Example – Aunty Helen died, and in her last will and testament, left her house to her son, her jewellery to her daughter, her bank account to her chauffeur and…
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.
At every appointment, take notes and always date them.
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 initial 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, 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. Make phone calls. Write letters. Both 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, or a letter or visit to your MP or MLA. Remain calm, state 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. A caregiver’s first and foremost endeavour is to advocate for those who are under their care.
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.
Do you work with the terminally ill? Are you making that last journey with a loved one? Has someone you love just been hit with a dreaded diagnosis? Then David Kuhl’s book could be an important read for you.
I wish I had found this book when my husband was still alive. And I wish every doctor, caregiver and member of the terminally ill patient’s family would take the time to read it.
David Kuhl speaks honestly about his experiences and emotions as a doctor. The book clarifies not only the needs and desires of a dying person, but also the attitudes and challenges of the medical professional involved in diagnosis and treatment.
I found What Dying People Want: Practical Wisdom for the End of Life in the White Rock Hospice Library. Leafing through the book, I realised that much of Kuhl’s research had been done at St. Paul’s, a Vancouver BC hospital where my husband was treated in the cardiology department over a period of twenty years.
I’m finding What Dying People Want: Practical Wisdom for the End of Life an informative and compassionate read. For those who suddenly find themselves face to face with their own or their loved one’s mortality, it’s a read I highly recommend.
En route to Phoenix this week, I discovered an article on ground-breaking research by Dr. Paul Alan Cox into what scientists call the “tangle diseases”.
Alzheimer’s, ALS or Lou Gehrig’s disease, Parkinson’s, Lewy’s Dimentia, Pick’s disease and supranuclear palsy are all caused by a build-up of placque and misfolding of the proteins in nerve cells.
Cox, who has studied this affect in several countries over a number of years has established research that may suggest that an amino acid known as L-serine could prevent or slow the onset of tangle diseases.
Cox believes another amino acid called BMAA, when consumed in massive amounts becomes a toxin, replacing L-serine. The absence of L-serine then allows the breakdown of proteins, causing the build up of placque and killing nerve cells.
He found one society which was free of tangle diseases.
“Centenarians walked as gracefully as ballet dancers,” Cox reported. He found their diet was rich in seaweed and tofu, two foods known to contain high levels of L-serine.
L-serine is available as a powder through Amazon.
L-serine is also a natural component of tofu, seaweed, sweet potatoes, and author Jay Heinrichs adds, “even bacon”.
Currently the FDA is looking into the sale of L-serine as a supplement.
The information in this article comes from the article “The Storied Man” by Jay Heinrichs in Southwest, the Magazine. September 2016 edition.
This weekend past, I attended a funeral. The woman, a kind and caring person, an educator, mother and grandmother, was honoured by her family, who gathered around to mourn her passing.
Friends came from far and near; people who had immigrated with her, others who taught in the same schools or baby sat her children while she worked. This lovely woman was involved in the work of her community and temple and left a fascinating legacy for her children and grandchildren.
Harbajahn had three daughters and they took turns month after month, going to her home to care for her as her Alzheimer’s increasingly took its toll. They brought the grandchildren, too. The youngsters played together, visiting with their grandmother and learning, by osmosis, the process of caring for someone you deeply love.
When I say care giving is a love song, I don’t mean to diminish all the practical and difficult challenges faced on a daily basis in looking after a person. But I do mean to celebrate the loving kindness, the tenderness and patience with which these offices are carried out.
Studies have shown that what is important to a dying person is being touched, held, loved. Having someone with them. And that’s what this family did for their mother; what all care givers offer to their patients. A companion on the journey.
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.