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.
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.
In North America it is estimated that the over 65 population will double to 70 million by 2030. In the US alone, the home care provided by family members or other unpaid members of the general public (friends, neighbours) in 2007 was already worth an estimated 370 billion dollars.
So, who is a caregiver? Are you a caregiver?
According to the American Family Caregiver Alliance you are a caregiver if you provide these services:
Buy groceries, cooks, cleans house or does laundry for someone who needs special help doing these things? (This sounds like what I did for every husband I ever had).
Help a family member get dressed, take a shower and take medicine?
Help with transferring someone in and out of bed, helps with physical therapy, injections, feeding tubes or other medical procedures?
Make medical appointments and drives to the doctor and drugstore?
Talks with the doctors, care managers and others to understand what needs to be done?
Spend time at work handling a care-giving (patient) crisis or making plans to help a family member who is sick?
Is the designated “on-call” family member for problems?
Sadly, you are not unique if while performing these types of services, you juggle work and family. Some of you may find yourselves in the “sandwich” generation, that is, taking care of parents and children at the same time.
All of these factors can be further exacerbated by the type of illness the patient suffers, by availability of facilities and professionals, by cultural approaches and also by livng a long distance away from the person who requires your care.
Want to read more about caregiving? To find some examples of complaints and kudos and good tips about caregiving and possible resources? Then go to:
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.
Many caregivers, especially spousal caregivers, are the person who has always hosted the family dinner. An exhausting undertaking when everyone is well, rested and fully functioning, the mere thought of the gathering can be enough to reduce a caregiver to tears.
You might think the family involved would make other arrangements. But when they consider the difficulty of moving the person with health issues to any other locale, away from the comfort of their bed, multiple medications and specially equipped rooms, they probably realize this is not in anyone’s best interest. So the default decision is to impose on the caregiver, in order to have what may be the last Christmas with this loved one.
As a caregiver, you have a responsibility to yourself, the patient, and your family and friends to ensure that this holiday event is enjoyable for everyone. Here are ten tips to help you do so with minimal stress.
DELEGATE: Optionally, this could be numbers 1 through 9. Choose one item of the dinner that you wouldn’t mind being responsible for and one thing only, and stick to it. If no-one else volunteers to bring anything, they will all be eating turkey or cheese straws or whatever your one thing is. Be very clear about this when talking to others.
MENU: Plan the menu with those who will be attending and make them responsible for every item except the one thing you have chosen to contribute.
GUESTS: Limit the attendees. If you know that cousin Jane will complain about the food and bring three bags of potato chips as her food contribution: well who really needs it? This is also probably not the time to introduce new people to the family scene.
VOLUNTEERS: Plan to have at least one person to come and decorate, and set the table the day before. Worst case scenario, if the person doesn’t show up? Forget the decorations. Light a few candles, have guests grab plates and cutlery from the kitchen.
VOLUNTEERS: Choose a capable friend or family member to come early. Have them check the bathrooms for cleanliness, towels and tissue. Ask them to greet people and co-ordinate food and drink as it arrives. This will free you up to attend to yours and your loved one’s needs in the time immediately preceding dinner.
VOLUNTEERS: Organize the clean up crew (previously mentioned volunteers should be excluded) who will load the dishwasher, put leftovers away, and/or send food home with the bringer.
YOU DECIDE: If at the end of the day, there is insufficient help to make the day do-able in your estimation, invite people to come for coffee and drinks only. Buy a few dozen cookies and tarts, or if you prefer, fruits like grapes and some select cheeses. Then ask people over for a specific day and time: (Saturday, Dec.24th, 1-3 p.m.)
ACCESS: Make sure the patient/spouse has a chance to see everyone, however briefly. Be aware of when they need a rest or when the conversation is too taxing.
APPRECIATION: Even though you will feel tired when all of this over, you will feel renewed by the spirit of co-operation and giving that has made this Christmas special. Thank everyone for helping to make the dinner a joyful success.
LET IT BE: The key to a perfect day is this: whatever happens is meant to be. Relax into the day. Know that whatever doesn’t get done won’t matter. Your house isn’t immaculate? No-one expects it to be. You look tired and disheveled? People know how challenging your journey is. What they want is to connect with you in a meaningful way, and by letting them participate in the planning and the cooking, you are giving them a marvellous opportunity to express the Christmas Spirit. Relax. It’s a NO GUILT DAY.
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 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.