An Undiagnosed Autistic, I discovered my situation when my grandson was diagnosed and my daughter phoned me and said, "Mom I know what Dustin has, and you and I have all the symptoms!" I grieved the loss of the hope of being 'normal'. But later I decided that I was my own kind of normal. I write to encourage other autists and to promote the unique advantages of being autistic..
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 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.
Have I got the latest list of meds? Did I remember Chris’ needle and insulin, his noon meds for the journey home? Has he taken his morning shot, his morning pills? Do I have the purse with the medicare cards, ID and any other necessary forms or documents? Did I get gas recently or do I need to stop at a gas station?
It was often a harried rush just to get to the car, let alone the doctor’s office. That’s why I felt it was so important to plan ahead the night or even days before.
In his book, What Dying People Want: Practical Wisdom for the End of Life, Dr. David Kuhl gives some thought-provoking suggestions for visiting the doctor’s office. What I’m presenting here is a mere snippet of this information:
Before the appointment, list your concerns in writing. Then prioritize them. Its always a good idea to put a notebook and pen in your bag for note-taking at the doctor’s office. At the beginning of your appointment explain to the doctor how many concerns you have and then inquire regarding the time constraints of the appointment. Deal with what you can in the time provided, keeping to your pre-assigned priorities.
Be specific about symptoms and issues (You should have notes to refer to regarding these).
Regarding tests: be sure you ask and understand what the tests are for, what they will involve. (Make sure the person in care has a chance to ask questions, to get answers, too!)
When given a diagnosis, ask questions until you are sure both you and the cognizant patient understand.
If given a new prescription, find out what the proposed effect is. How long will they take it? How will it affect them? How will it react with their other medications?
To sum up, its good to always clarify what the doctor is saying. Be sure you truly understand the processes you’re about to embark on. Take notes. And perhaps most important of all, make sure the patient is comfortable with his/her own level of understanding of what’s being said.
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.
On this, the anniversary date of Chris’ passing, I remember. I play his favorite songs on the car stereo as drive to his grave site. I drive the old T-Bird he got for my son. If no one else is about, I’ll rev the engine as a salute on my way out. While I’m there, I tidy up a bit; trim the grass, water the flowers or add some new ones.
Of course I chat with him. He always said he wanted to be buried rather than cremated because he wanted somewhere people could come and visit him.
Some anniversaries I’ll make a coffee date with those who were special to him. Like the great gal from the Benjamin Moore paint store who would always put on a fresh pot of coffee for him.
He was a good man and my great love and these are my ways of remembering.
Everyone honours their loved ones in their own way.
When my brother died, my sister in law, Kamla, arranged a memorial scholarship for Jack. Anyone can still contribute if they like and it helps young people shape their future. A hockey and softball coach, Jack was always interested in helping young people develop their skills. Well thought of at work, Jack’s employer had a bench installed in the local high school grounds dedicated to him.
Also, my brother loved to camp with his family on this one particular site on Arrow Lake. Now every year Kamla hosts a big camp out, with games and remembrance balloons that carry felt pen messages into the sky on the anniversary of his death. Cousins, nieces, nephews, siblings, grandkids and friends from all over come for this annual event.
In some cases, budget restrictions dictate how we will remember our loved ones. It really doesn’t matter. Whether you have a mass said, or party hearty, it’s the thought, the memories and the heartfelt love that really count.
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.