For myself, time to reflect upon how to balance my desires and expectations with the caregiving role I had assumed for another. This was of most benefit to me.
It was after the death of my father that I came to experience the positive change in attitude that this time of reflection can bring.
Mom and I had never been close. We never had what is viewed as the traditional ‘mother-daughter’ relationship. In fact, we’d had strong differences of opinion, and unresolved situations from our past.
But after the death of my father, Mom had nowhere familiar to go. And she was already in the early stages of dementia.
While we lived in a big city and she came from a small rural area, I felt she would be more comfortable living with my husband and I than with strangers in a rest home.
But could this work?
After a great deal of thought I came to the following decision: If I loved Mom, and cared for her well-being enough to want her to come and live with us, then I was clearly able to, if not forget the past, at least to forgive her for her part in it, even if this remained unspoken.
And if I loved her that much, then we would be okay. I would have no expectations of her. I would see what she could manage on her own and with what she needed help, and move forward from there.
That decision set my attitude.
Letting go of the past opened the way for Mom and I to eventually establish a curiously close relationship, one which had eluded us during my youth, and to heal the wounds we both had suffered in our mother-daughter angst.
Years later, as my husband, Chris, grew weaker and his heart disease progressed, I knew I needed help. I availed myself of what the local public health agency had to offer, but it was very limited.
In church one Sunday the priest told us to reflect upon whatever special blessing we required. I knew what I needed:
I needed God’s grace to see me through to the end of my husband’s illness. It is one thing to do what is asked of us by life, but it is another thing entirely to do it with love and joy.
No, I was not always cheerful and loving! I’m also human!
But at times when I caught myself ‘tensing’ into a reactive and unpleasant state I’d remember my prayer for grace, breathe out my tension and relax into a more loving approach; one that benefitted both myself and my husband.
We don’t have much time to ourselves; at least, I didn’t. But once or twice I had the time to think deeply about my position as caregiver.
And I believe it was the result of the thoughts generated, the decisions made and the attitude engendered by these times of contemplation that made my caregiving experiences positive.
It was in these times of reflection that I came to realize it is not the person in my care who determines how I feel about looking after them. That comes from within me.
I learned that I decide what my attitude will be, what presence I will bring into the room.
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.
Being a caregiver is demanding. Sometimes overwhelming. And sometimes? Extremely gratifying.
It can be an emotional roller coaster. For instance, one woman described it as being in “Dementia Prison” with her mother. Another, who cared for a husband whose condition demanded 24 hour care told me, “but I love him so much.”
Many people who are dealing with their loved one’s condition alone often feel drained and exhausted. Being constantly tired and depleted of positive energy can lead to chronic depression.
So, you may ask, what are the positive aspects of this care giving journey?
Consider this: This week, my friend’s only child, her thirty-four year old son, Shaun, died suddenly and unexpectedly.
He had a stellar career in Ottawa, working with the Prime Minister and cabinet members. His portfolios included the Yukon and the three territories. People who knew and worked with him describe him as a gentle, incredibly knowledgeable, go-to guy if you had questions, or needed assistance.
At this young age, he had run campaigns for MPs and provided research for political speech makers. He made and kept his friends: those from university, from campaigning, from his work in Ottawa and from his home in Vancouver, on the West Coast.
This brilliant, considerate and loving young man is no longer with us. Because his passing was completely unanticipated, there was no time to say goodbye, to make a final connection, to reach out to him, or for him to reach out to others. In an instant he was gone, and with him, that cherished light in his mother’s life.
Yes, care giving is demanding; sometimes depressing, sometimes exasperating while at other times hopeful and surprisingly rewarding. But above all, attending to our loved ones, and on occasion our not-so-loved-ones, affords us the time to reflect, and upon reflection the possibility of re-configuring our relationships.
The gift of time is precious. It allows us to say goodbye. It is an opportunity for closure for both ourselves and our loved ones.
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:
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.
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.
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.
God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. These words from the serenity prayer are familiar to many people. They make sense.
But as a caregiver, many times you feel hopeless to change anything about your current situation. For awhile, Viktor Frankl felt helpless to change his situation, too. Frankl was a German psychiatrist who spent several gruelling years imprisoned in Auschwitz.
Suffering the most cruel and humiliating deprivations, he observed: “…everything can be taken from a man but one thing: the last of the human freedoms–to choose one’s attitude in any given set of circumstances,…”
Frankl spends a large part of his book, Man’s Search For Meaning discussing the issues of attitude and responsibilty. As caregivers, we sometimes have this responsibility thrust upon us.
Suddenly one or both parents are no longer capable of living on their own. Or perhaps severe illness suddenly strikes a spouse or a child, a sibling or a friend. Or a family member becomes the victim of an accident or crime.
When called upon to respond to these situations, people may sometimes feel a certain sadness, due to a loss of personal freedom, a life schism that was unanticipated. There are times when tempers flare and caregivers may wish to fight against the unfairness of the situation, or resist the restraints caregiving puts on them.
While the focus is on the patient, the caregiver struggles with feelings of inadequacy, disappointment and sometimes even resentment.
This is wholly natural, and bound to occur. However, once the initial shock wears off, it is important to recognize what it is within the situation that can be changed. One aspect that affords change and which will bring the most benefit to you and to your patient is your attitude.
Take a person who resents being a caregiver. Perhaps they were thrust into the situation, perhaps they felt they had no choice in the matter. This attitude will create a negative atmosphere for both the patient and the person caring for them.
The effect, however, will be most harmful for the one harbouring the bitterness: every day will be a new source of irritation, frustration and general bad feelings.
But if the care giver can bring themself to the attitude that it is important to be the one who is accompanying the patient on his last journey, that it is a journey that demands dignity, humour and kindness, the days will pass very differently for both the patient and the person caring for him.
As Frankl notes, in dire situations, it is not always what we expect of life that matters. As caregivers, we must ask ourselves, what does life expect of us?
And for each of us, Frankl believes,a ‘unique opportunity’ is presented when we find ourselves confronted with severely challenging situations; an opportunity to find in ourselves a previously unfathomed capacity to act with dignity, compassion and honour.
Like it or not paperwork is a huge part of being a caregiver.
There are prescriptions, prescription adjustments, forms to fill out for medical plans, for Red Cross equipment loans, and at doctor’s appointments (why do we have to fill out the same four page forms every time we go to the heart clinic?).
There are forms to pin on the fridge for the ambulance crew, bills to pay, rates to negotiate and battles that must be fought.
All of this when you are already exhausted, overwrought and all but ready to give in.
Don’t give in.
If the paperwork is getting you down, just put it aside for a day or two. Let it sit.
And don’t let the agencies bully you.
You need to know when to fight and when to give in graciously. If you can. Sometimes we’re just too worn out to know how to be gracious.
For me the major battle was over the declaration of palliative care.
Where I live, Palliative Care means that his meds (which were costing us $500 a month in spite of the provincial medical plan) and the relief care were to be covered by the province.
In other words, I was not supposed to have to pay anything after the hospital cardiologist in Vancouver declared Chris palliative in writing on the approved form and sent it to all the proper authorities. That happened on February 6th.
Agents from the health authority phoned me almost immediately and told me I could have the additional care the cardiologist recommended and it would begin the next day.
However, the worker came only for his usual hour. When I phoned the agency, a different clerk said Chris would not be deemed palliative in their system until their nurse had visited and confirmed the declaration.
Even though I repeatedly phoned for an appointment, the health authority didn’t get a nurse out until the end of February.
In the meantime, the more I thought about the situation, the less it made sense to me.
Why did a nurse have to approve a cardiologist’s diagnosis? Chris was declared palliative on February 6th in writing (I had a copy of the signed form), and that should have been sufficient.
But their inability to get a nurse out to us was their justification for billing us for all of February. By now Chris had been ill a long time and our resources were extremely low.
I fought this. Chris fought this. His daughter fought this. But they insisted I pay until the end of February. I finally agreed to this just to settle him down, but it was too late.
In spite of our efforts to steer him away from the topic, Chris argued with the nurse in the late afternoon about this issue.
That night, he had to be taken by ambulance to the hospital with a severe heart attack.
I couldn’t help feeling the health authority was wrong on this one.
So during Chris’ hospital stay, I composed a letter to the health authority, copied it to our local MLA and the cardiologist.
In the letter I stated our case in the most logical terms possible. Enclosing a copy of the palliative care declaration form, I mailed the three letters.
After several days in the hospital, Chris returned home. He died only days later.
I didn’t hear anything regarding the letter. I thought afterward it was a foolish thing to argue. It seemed inconsequential in light of Chris’ passing.
Then, some days after the funeral a man phoned from the health authority head office back east. He said they had received my letter, reviewed the file and would refund the monies I had paid for February 6 to 28th.
It felt odd, something previously so important now seemed almost irrelevant.
But I knew Chris would have liked to have known that we got our money back. He hated to ever feel that we’d been taken advantage of. Especially when you’re dying.
Miss you, Babe.
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.