Category Archives: caregiving

Caregiver Stress: Choosing Respite Care

“Where’s Joe?” Mom would frequently ask.  She and Dad had been married for more than sixty years when the stress of caring for a wife with Alzheimer’s brought on his heart attack.  

“Stay here.  Wait for Jean!” Joe ordered as the ambulance attendants helped him onto the gurney.  Mom twisted her hands and watched him being wheeled out the door of the Baptist apartment complex. 

She never saw him again.  In her bewildered mind, he had abandoned her. 

He died before he got to the hospital. After a number of family discussions, I brought her from her apartment in Salmon Arm to my home in downtown Vancouver, a city and area in which Mom had never lived, where she knew no-one and where both my husband and I worked full time.  Fortunately, I worked from home.

We caregivers know all too well that in Canada and the US, by far the majority of aging seniors would be left on their own if not for family caregivers.

In fact, two thirds of US caregivers are unpaid family or friends.  

And in British Columbia, a 2017 report from the Office of the Seniors Advocate reveals that unpaid caregivers, family or friends, provide care for 94% of BC seniors requiring assistance. 

The report, Caregivers in Distress: A Growing Problem, affirms that of these caregivers, 29% are in distress.

Almost a year after Mom came to live with us, my sister came to visit.  She lived in Palau with her husband, who was in mission service at the time.  When she saw me, she expressed concern: “You need help, Marg, or you’re going to end up like Dad.”

She arranged for a caregiver from the Philippines to live with us and help care for Mom.  The arrangement worked fairly well for about a year.  The woman, who had been a teacher in the Philippines where her husband and family still resided, did her best to adjust to both Canadian ways and to being separated from her family while caring for a person with dementia.  

When it comes to paid caregivers, a US report states they are often undereducated or untrained for the position, and poorly remunerated.

A 2012 study co-authored by Lee Lindquist, Chief of Geriatrics, Northwestern University Feinberg School of Medicine found that in-home caregivers received only the minimum wage, and were not well supported by the agencies for whom they worked.

Also, according to the Paraprofessional Health Care Institute, many workers in senior care homes are not trained at all, and surprisingly, most establishments do not check their employees for drug usage or criminal records.

While this may be different in Canada, the following are important questions to raise when looking for an in-home caregiver or a respite facility: 

  • Have the people who will be looking after your loved one received appropriate and adequate training? 
  • Have they been through a criminal records check?  Tested for drug use?

And with regard to respite care in a facility:

  • Is there sufficient support staff for the number of clients?
  • How many clients are in each case worker’s care load?

Your decision about the facility you are considering may be the most important one you will make when it comes to ensuring that your loved one is provided with consistent, competent and loving respite care. 

And as for in-home care workers, it is important to take the time, and make the effort to ensure that the prospective caregiver fully understands your loved one’s unique situation and personal needs. 

And for us as de facto caregivers, it is important to know what we can and cannot expect from the in-home worker.

After two years, Mom went to live with my brother, Jack and my sister-in-law, Kamla, a trauma team nurse who cared for Mom while also working full time and raising two teenagers. Eventually, she found placement for Mom in a new facility near the hospital where she worked. 

Because of Kamla’s medical background, she was well suited to oversee Mom’s care, monitoring her well-being in the long-term care facility.  

When I look at my sister-in-law, I see an angel! 

Ten Best Holiday Gifts For the Family Caregiver.

Nowadays many families experience a situation in which one or more members find themselves in the position of caregiver.  And it’s Christmas!  What better time to offer the gift of a helping hand.

Most people want to help, they just have no idea what to offer in view of their own time constraints.

If you really want to make a caregiver’s day, here are ten ways to do that.  But before you call with offers of help, check your own schedule so that you know before hand when you can deliver on these offers.  

  • Be specific. Decide what you are willing to provide: time sitting with the patient? Meals?  Baking? Help with housecleaning or other chores?  Running errands?

  • Bring or send flowers. Flowers brighten up any space, cheer up a sick room, and are a beautiful reminder that somebody loves you.

  • Phone first.  Arrange the visit for a time when you can stay at least half an hour.  Do not stay more than one hour. Spend at least some of your visit with the person being cared for.

  • If your intent is to spend time with the caregiver, stop and spend a few minutes with the ‘patient’, and then continue your visit in another room with the caregiver.  This allows the caregiver to vent if necessary.

  •  If you live far away or are busy with work and family and can’t help physically then send flowers, money or a gift card.  Or arrange for a housekeeping service to come in once a week or twice a month.

  • Express appreciation. If you’re related to the person being cared for?  Be grateful.  And show it.  Remember that old saying?  But for the grace of God… Praise, if sincere, is nice to hear. It costs nothing and can make someone feel much better.

  • Be reliable. If you say you will help in some way, do so and do it at the time you stated.  Caregivers are often weary, sometimes lonely and always overwhelmed, so be the bright, steady star in their lives—show up when you say you will.  Bring what you said you would bring.  And along with it?  Your cheerful, smiling face.

  • Keep in touch. Caregivers often get left out of the family loop because they can’t get away to visit with relatives and friends, attend family events like birthdays and anniversaries and even casual get togethers.  Phone them.  Text them.  Keep up with their facebook page. Let them know they are not alone in this.

  • If you’re internet savvy, offer to do on-line research for them. Maybe they need to find the palliative care/hospice alternatives in their community, or the parameters for these kinds of care.  Maybe they’d like to know more about certain medications, or even caregiver associations or Red Cross equipment depots in their area.

  • Keep your own troubles away. Caregivers have enough to bear. If you’re visiting because you want a sympathetic ear, stay home. Find a counsellour or a different friend to confide in.  Bring only your best face to the care home.

Yours truly,

Margaret Jean.

Caregiver Resources B.C. Canada

For many of us who are caregivers it’s not only the physical and emotional care of those we love, it’s also navigating the medical and legal systems that can be time-consuming and exhausting.

The effort and time it takes to sort through various systems in order to first determine what resources are available, and then the protocol of accessing them, is a huge part of the caregiving process.

Here are some links which may prove to be helpful in finding and using those resources:

 

 

 

  • In the lower mainland, Vancouver Coastal Health provides caregiver support as well as other services:  http://www.vch.ca/your-care/home-community-care/care-options/caregiver-support

 

  • Always remember that at your local Hospice Thrift Shops you can usually find brochures outlining the hospice support services listed in your area.  For example, here is an overview of services provided by the Surrey Hospice Society: “We serve the people of Surrey and those who access end-of-life care in Surrey British Columbia. Our Volunteers work in the community, at Laurel Place Residential Hospice and in the Tertiary Palliative care unit at Surrey Memorial Hospital. In addition to the supports and services we offer those facing end-of-life, we also provide respite, support and grief counselling to their friends, family and loved ones. Our support is on-going and far-reaching. We provide companions for the journey.”

 

I’m sure you get the idea.  For hospice services in your area, just google the name of your town or district and ‘hospice society’.

Resources are out there.  Do take the time to access them.  We are so fortunate now to be able to look things up on the computer to get an idea of the services offered and how they might fit our needs.  Phoning the agency in question before setting out can also be very helpful.

These resources are intended for your use, so don’t hesitate to find those that fit your needs and go for it!

If you have any information regarding additional resources please don’t hesitate to email me at: margaretjean64@gmail.com.

 

 

 

 

Compassionate Care Givers: The Precious Gift of Time.

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.

Are You A Caregiver? How Do You Know?

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:

https://www.caregiver.org/caregiving

I hope this helps!

Yours truly,

Margaret Jean.

A Compassionate Insight Into What Dying People Want by Dr. David Kuhl

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 margaretjean64@google.com

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.

Caretaker, Caregiver?  

The next 3 posts are guest posts from Gemma Tammas, a continuous narrative in three parts.

Enjoy!

by Gemma Tamas          2011 October ©

I am a wife, mother, grandmother, and great grandmother.

My career started when I was only eighteen years old looking after my husband, and soon, taking care of my two boys. All of that without having to take a course and study for; it was simply ‘learning on the job.’ But, if I would have given a test, ‘an aptitude test’ called nowadays, I would have passed, because all you needed was love and I had plenty of that. Through the years while ‘training on the job,’ I made many mistakes, too many to count, but my love never suffered by it, my passion to give unscathed.

Now, in my twilight years, I am still taking care of Tom, my husband close to sixty years, as he fights his many sicknesses, with great determination, as he fought his way through many obstacles and hardships during his lifetime. Our marriage was not a perfect one but we are together with a strong bond, called love, forever.

It started four years ago when one morning Tom woke up with high temperature, shaking feverishly, talking nonsense, but still he had enough strength or stubbornness to insist to drive himself to the Vancouver General Hospital. It would have been futile to argue with him to go to a much closer one. Swaying on his feet, jingling his car keys in his hand he dropped them and fell into my arms. With my brother’s help we lifted him into the car, where he slumped down. By the time we arrived at the hospital thirty-five kilometers away, he was unconscious and stayed that way for three days. During that time he was in isolation as the doctors didn’t know if he was infectious until they put him through rigorous testing, while battering me repeatedly with their questions. Was Tom drinking? Was he an alcoholic? I was shocked, offended by their interrogations as Tom never drank, maybe a glass of wine with his meal.

When his fever was under control and his tests showed no infectious disease, he was shifted to the geriatric ward. I spent my time by his bedside from morning till night. Every morning he greeted me with stories about the happenings on the ward the previous night. “Do you know,” he mumbled, “that old Chinese woman in the next bed is a drug dealer conducting her business on her cell phone at night, and another was murdered. Last night.” He whispered in my ears. “Two men, dressed in black, came and killed her.” His eyes filled with horror. “You have to get me out of here,” he begged. “I’ll be the next one, you’ll see.”