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.
What Dying People Want is a doctor writing about his very human journey through the suffering of the terminally ill and the desired emotional and practical responses from health care professionals. Most importantly, Kuhl addresses situations and how to approach them for best results, always bearing in mind that what the patient most seeks is some sense of control over his life and the treatment of his illness.
I remember it was always a hassle getting out the door on the morning of Chris’ doctor’s appointments. He liked them to be early in the day, I think because he felt best able to cope then–his energy levels seemed slightly higher in the morning, though he soon flagged.
We lived a good thirty kilometres drive through rush hour traffic, and at the end, paid horrendous hospital parking lot fees. Then there were the interminable hallways, steps and elevators to negotiate within St. Paul’s. For Chris, these sessions were exhausting. Near the end, the toll on him was severe.
But he had been treated at St. Paul’s from the night of his very first heart attack, when we lived in the West End five minutes drive from the facility. And in the end, the young doctor who had treated him then became the head of St Paul’s Cardiology Department, and in the years between, he and Chris built up a good rapport.
So David Kuhl’s book, based on research done at St. Paul’s struck a chord with me.
Several aspects of the book appeal to me. Kuhl introduces each chapter with quotes from patients, followed by an anecdote, legend or myth that speaks to the theme of each chapter. He uses his own experiences and those of terminally ill people to illustrate their concerns.
I found it to be practical and profound. Any comments you may have on the book would be appreciated. Just email me at firstname.lastname@example.org
These next few blogs are based Dr. David Kuhl’s book, What Dying People Want., based on his research and experience as a palliative care physician serving at St. Paul’s Hospital in Vancouver, B.C.
During the days of tending your loved one, you are constantly engaged. Doctors, health agencies, pharmacists, family and friends are all involved in the work you must do.
But who do you talk to when you’re suddenly feeling overwhelmed or dismayed? Or when you need respite care?
Or perhaps, like me, those days are over. And like me, you may suddenly find those days that were filled with innumerable tasks suddenly stretch before you in an endless array of emptiness.
Everything is quiet and still and you begin to feel the pain. Where do you turn for help?
Thrift shops have always been a mecca for me when I’m down–looking over the items seems to help me focus on something other than my present state. One day when I was in the White Rock Hospice Thrift Shop, I mentioned to the clerk that I was trying to find a source of grief counselling.
At once she said that the Hospice Society provided such a service. She handed me a pamphlet with a list of all the services they provide. I was surprised to see that these included bereavement walks, as well as grief counselling individually or in groups.
The best part? It was all free!
For caregivers the hospice societies offer many services including counselling for both the family and the patient. They also act as a resource centre offering information about services they and others provide, including respite care, one on one support and palliative care.
So if you’re looking for any of these services just Google your community hospice society or head on out to your local hospice thrift shop.
Once I found the hospice services, I no longer felt alone in my grief. And I’ve found it easier to situate myself in my new reality.
A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.
I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.
This is her list of titles:
Before I Forget by B. Smith and Dan Gasby.
Come Back Early Today, by Marie Marley, Ph.D.
Slow Dancing With a Stranger by Meryl Comer.
The Long Hello by Cathie Barrie.
To Johnny With Love by Dagmar Christine Albert
My Mom, My Hero by Lisa R. Hirsch.
When Breath Becomes Air by Paul Kalanithi.
She also recommended two books that are fiction based on fact:
Inside the O’Briens by Lisa Genova and
Turn of Mind by Alice La Plante.
Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.
Thanks, Donna, for sharing.
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.