caregiver dilemmas, caregiver resources, caregivers for the terminally ill, terminal illness & caregiving

A Caregiver’s Dilemma: Is the Patient Better Off at Home?

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In caring for someone we love the question arises, what symptoms can be managed?  What aspects of the situation are beyond the scope of a medical professional?

Beyond our capabilities?

When we know that someone we love is dying, we suffer too.  We have our own sense of loss to deal with, added to the uncertainty of our role in caring for our loved one. 

To even contemplate looking after a dying person at home is daunting, challenging. 

But we know that some who are familiar with these situations, like hospice nurses Callanan and Kelley, maintain that the best care for a person who is ill is most often that given by family and friends in the familiar surroundings of their home.

There are undoubtedly physical symptoms. 

Dry mouth, weight loss, fragile skin and pressure sores, nausea and vomiting, constipation, diarrhea or incontinence, and breathing difficulties are just a few.  No one patient will have all of these symptoms, but in general, some physical symptoms are to be expected. 

For most of these, medical professionals can offer remedies.  In others, keeping the patient comfortable can be a matter of routine. 

In Final Gifts, Callanan and Kelley suggest that most physical symptoms can be alleviated to a large extent.

Pain is best handled by giving regular moderate doses of painkillers, rather than ‘holding off’ until the pain becomes unbearable and then taking a large dose.  The authors state that regular pain medication in moderate dosage can be increased over time as the pain increases, and in the meantime, the patient will be more comfortable overall.

What can’t be controlled?  These are personal attributes: the patient’s temperament, their response to the situation in which they find themselves. 

Dealing with emotions and attitudes requires some detective work on the part of the caregiver, some skillful prodding. 

It is not possible for you, the caregiver, to sort out these issues but hopefully, by being aware of what the patient is feeling and needing, by listening to and discerning just what they are trying to communicate, you will be able to assist them in finding ways of dealing with emotional issues.

I cannot emphasize enough how helpful I have found the wealth of knowledge and sound, practical advice given in Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying.

These hospice nurses have learned a great deal about death and those who are terminally ill, and if you are in a situation of caring for someone on this final journey, this book is a travel guide that will see you both safely home.

caregiver dilemmas, conversations with the dying, dreams & visions terminal illness

Conversations with the Dying: Dreams and Visions

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Your loved one has begun to talk of vivid dreams.  Dreams that seem to excite and perhaps upset them.  

Often the dream may involve an intense vision of a family member or friend who is long since deceased hovering above their bed.   Sometimes the visions are accompanied by powerful sensory experiences.  

Some may distinctly feel the touch of their long-deceased mother’s hand, or speak excitedly about the brush of an angel’s wing.

Often the dying will report being greeted and comforted by family or friends who have passed away in years gone by. Should you speak to the doctor about hallucinations?  What if your loved one becomes agitated and says things like, I need to be on that flight!  Or if elderly, they wake up and say Mom and Dad were here.  They’re waiting for me to go with them.  Should you seek a change in medication?

There is considerable research today into what is called End of Life Dreams and Visions (ELDV’s).  Much of this research has been done in hospice settings. Some researchers say that although the dreams and visions that come near the end of a person’s life may somewhat resemble hallucinations, they are often a completely different type of occurrence. 

These dreams and visions are so widely experienced by such a great diversity of patients in so many different end of life situations, that it is more likely they are sent to assist people in their process of dying.

The kinesthetic or sensory aspects to the dreams are comforting to the dying.

In fact, researchers at the Center for Hospice and Palliative Care, Cheektowaga, New York[i], believe the purpose of these incidents is to assist the patient in accepting their transition from this world to the next.

This ease of transition is also what nurses Callanan and Kelley, authors of Final Gifts[ii], have repeatedly experienced in the dying during their careers as hospice nurses. 

Callanan and Kelley stipulate that is important to let patients interpret their own dreams. 

If you attempt to explain their dreams, even with the best of intentions, you may be projecting your own beliefs and expectations which may be disturbing to the patient.  An alternative response might be Tell me what happened?

When the dying mention anything to do with travel, like having to catch a flight or a train, or needing to find a map or passport, a probing response like, It sounds like you’re going somewhere, is an appropriate way to help the patient interpret their dream and sort out their feelings.

Sometimes the person you are caring for will just have ‘a feeling’ about when they are going to pass. 

In that case, the patient might ask that a special day, perhaps Christmas or Easter, coming up in the near future, be celebrated early. Or they may express their belief that they might not be here for some upcoming special event.

The effect of these dreams and visions is generally a positive one which assists the dying in the process of their second birthing, from this world into the next. 

It is significant that one research team studying various international and American based studies, noted that in America, religious figures are not as frequently represented in the dreams and visions of the dying as they are in other parts of the world.

For both Patient and Caregiver, the understanding of, and appropriate responses to End of Life Dreams and Visions can be of significant benefit in the peaceful and comfortable completion of a person’s earthly journey. 

Before speaking to the doctor about a change in medication, be certain that the ‘hallucinations’ your patient is having do not represent an actual, lucid awareness of being between this world and the next—a vision intended to ease their concern about the journey on which they are about to embark.

[i] Grant P et al (2014) The significance of end-of-life dreams and visions. Nursing Times; 110, 28: 22-24.

Authors: Pei Grant is director of research; Scott Wright and Rachel Depner are clinical research assistants; Debra Luczkiewicz is hospice physician; all at the Center for Hospice and Palliative Care, Cheektowaga, New York.

[ii]Maggie Callanan and Patricia Kelley: Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying

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What Will I Say? Conversations with the Dying.

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When my husband was in the final stages of his terminal illness, my grandson, then nineteen, expressed a desire to be with his grandfather.  But I don’t know what to say, he worried.  It has always bothered me that I didn’t know what to tell him.

This may be a concern even for those who have had some experience with what the First Nations people refer to as Walking each other home.

In Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying, Authors Kelley and Callanan offer some advice, based on their careers as hospice nurses.

A dying person will experience a succession of grief emotions: denial, anger, bargaining, depression, and finally acceptance, but not necessarily in a predictable order.

When a patient is in denial, the authors stress that it is not advisable to attempt to make them face the reality of their situation. 

It is better to respond to optimistic statements about possible future activities by saying things like, Wouldn’t that be nice for you?  Or, I bet you would love that!

We need to respect rather than challenge these expressions of being healthy enough one day to participate in life again as they once knew it. 

However, the authors also stress that it’s essential to not collaborate in expressions of denial. 

Affirming their denial may leave the person feeling isolated and unable to discuss their situation fully at some later time.  They may think that you are unable or unwilling to face the reality of their situation, or to discuss it openly with them when they are ready.

If a patient is angry, remember that anger can grow out of fear, frustration or out of resentment.  While it’s not always easy to pinpoint the source of the anger, understanding the cause can help us respond lovingly.

Discovering the source of someone’s anger with gently probing statements like the following may be helpful:

I imagine it’s hard to always be asking for help.

This seems like it might be frustrating for you.

You seem upset.  Is it something I can help you with?

What’s happening? 

          Bargaining is often very private and not shared with others. If someone does tell you about a bargain they may have made with God or perhaps with their illness, be respectful.  The authors offer phrases like, Wouldn’t that be great!  or I’ll help in anyway I can.

          Depression comes from loss—for the dying, a loss not only of previous capabilities, but also of any possible future.  They are losing their whole lives, and this must be grieved. Be respectful of this loss and of the emotions which accompany the person on this lonely journey.

          Acceptance usually comes when the patient is comfortable and has had sufficient time to absorb the reality of their situation. 

This may be distressing for a caregiver who is in a personal relationship with the patient, wishing for more time with their loved one than the disease will allow.  The need for caregivers to express distress at their own loss is vital, and finding someone who will listen and respect their emotional journey is also desirable at this time.

          If you’re wondering what to say to someone who is very ill and unlikely to recover, I highly recommend this book.  It is not just the helpful tips that are offered, but also the attitude these nurses espouse that is so very helpful.

caregivers for the terminally ill, caregiving and attitude

Hospice: An Attitude We Bring to Our Loved Ones.

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When we are caring for a loved one who is experiencing a terminal illness, how can we best offer our support on their final journey?

We want to provide the best possible experience in these challenging circumstances, but how do we do that?

Fortunately, two full-time hospice nurses with experience both in-home and in hospital situations, have written a book about the attitude we need to have in dealing with someone who is dying.

In their book titled Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, authors Maggie Callanan and Patricia Kelley, offer a clear and comprehensive guide to bringing comfort to those who are making this final metaphysical journey.

Callanan and Kelley emphasize that hospice is not simply a place, but also an attitude.

Historically, hospices were initially a part of the medieval landscape, providing rest for travellers as they journeyed on pilgrimages to holy sites.  In the late 1800’s, two Irish nuns revived the concept in Europe as a compassionate opportunity for travellers who were weary or ill.

In 1967, Dame Cicely Saunders, a British doctor, founded the current hospice movement with the conversion of an 18th century hospice into the modern St. Christopher’s Hospice, in a suburb of London.

Dame Cicely has said that hospices are: “…for the care of the dying on a metaphysical journey from this world to the next.”  Addressing those who are housed within, she offers these words of solace:

“You matter because you are.  You matter until the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die.”

This affirmation helps us to understand some goals of treatment of the dying:

  • To keep them in the environment which is least threatening. For most people this will be their home, in which they are cared for by family and friends.

  • To give them as much information as they wish to have, no more and no less, about their illness, about what is going on in their body and how the illness and its symptoms are being treated. About how their disease is likely to progress, and if the patient wishes, even the way in which they will die.

  • To mitigate a possible ‘out-of-control’ feeling, some patients can be given partial or complete control of their medications and treatment regimes.

  • To ease emotional discomfort caused by depression, fear, anger and/or anxiety, it is important to determine how the patient is dealing with these emotions. Then determine what assistance may be beneficial.

  • To alleviate spiritual discomfort which may arise from a personal questioning of the value of their life, such as, was it worthwhile? Were people helped and lives bettered because they lived?  Support  from their religious leaders, for those who have  accepted a particular faith, may be helpful.

  • To overcome issues arising from possible social abandonment in circumstances where family and friends feel uncomfortable coming around. They may not want to interfere, or may not know what is helpful even if they would like to offer assistance. How can their participation, if desired, be encouraged?

As Callanan and Kelley point out, this is the final journey for a person who has been significant in our lives.  We owe it to them and to ourselves to provide loving and thoughtful support.  This book will help you to do just that.

caregiving, caregiving and attitude

Tribute to A Family Caregiver.

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My sister-in-law Shan looked over at me.  Her eyes filled with tears, but her voice held as she told me my brother, Jerry, had been stabilized and heavily medicated, following very intrusive emergency surgery. 

Shan had known some of what lay ahead for them when they married; he was already infected with the virus that would take his life just fifteen years later.  They had a daughter together and Shan kept up her busy professional career. She hadn’t much choice: Jerry’s illness forced his retirement six years ago.

Jerry was the youngest sibling in our family.  His twin, Jack, died ten years ago of a different cancer.  Unlike Jerry, Jack died within a month of his diagnosis.  

My partner and I drove seventeen hours to get to the Edmonton hospital where Jerry had been transported the week before he died.  I got to spend precious time with him in the ICU the night we arrived and for some days following. 

Then the Coronavirus pandemic dictated that only his wife and child would be allowed to visit, we returned home to the coast.  

It must have been gruelling for Shan to drive for hours early every morning from their hometown to the Edmonton hospital and then back again late at night, often in temperatures of 30 below.

Then there was the financial burden of a hotel and meals in Edmonton on those days when he would experience further emergency medical procedures which left his fate uncertain until the wee hours of the morning.  

But Shan was always there, always speaking positively of Jerry and their relationship, though the strain the last few months must have been considerable.

The strain on caregivers is inconceivable to those who have never had to juggle a career, child-rearing and never-ending medical appointments, including specialist’s medical procedures. All of this, along with other familial obligations and social commitments. 

It is especially difficult when the career of the caregiver is at its peak. The long sought after position is then at its most demanding, but if the health of a partner or child falters, then fails, decisions must be made that inevitably compromise professional responsibilities.

And if, as in many cases, the parents of the caregiver are also aging, or their child has special needs, the burden can be overwhelming!

In the midst of this pandemic, when many of us are self-isolating, we have the opportunity to reflect upon the  role that some among us fulfil with grace and dedication, patiently and lovingly, and the courage and stamina that such a role requires.

We are grateful to Shan for her loving care of our brother.

 

caregiving, Respite Care selection, stress & caregivers

Caregiver Stress: Choosing Respite Care

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“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! 

Bif Naked, cancer survivor, caregiving and attitude

Bif Naked, A Cancer Survivor, Speaks Out About Caregiving.

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“Cancer is the big reveal.” 

So states singer/songwriter Beth Torbert, more popularly known as Bif Naked, in her article in the September 27th edition of the STARMETRO.

Epiphanies and transformations happen within the cancer patient, she says, allowing for deeper self-knowledge, for discarding or examining pre-conceived notions, and ideas about the self.

Bif observed that women are often uncomfortable with being cared for:  They are used to being the caregivers.

It can take time to accept nurturing.  And for many cancer patients, unrealized issues of self-esteem can arise.

 Bif found her natural reaction to her own cancer was to make others laugh.  To use self-deprecating humour to lighten every situation. 

Being able to use her special brand of humour to make people break out in “snort laughter” was an important aspect of making others more relaxed with her condition, and with what was happening in the present moment.

She felt at her best when she was helping others.  And, she reflects, taking care of others can be a natural response for women.

This ability to invoke laughter in others helped Bif to lose all sense of time: to allay her fears. 

It was her way of caring not only for herself, but for her family, her medical teams, and her companion cancer patients.

Now that she is a cancer survivor, Bif says she feels it’s her responsibility to visit, to bring cheer.  This amazingly intuitive vocal artist suggests that our Canadian culture makes us reticent, hesitant to intrude.  

But Bif says, Be a pest.  Always be a pest.

The old-fashioned approach, bake a pie, call, bring flowers, read a book, is what best helps overcome the isolation and alienation that families can feel when cancer strikes close to home.  

 Laughter, Bif reiterates, is the best medicine!

Alzheimer's, caregiving and dementia

Alzheimer’s: Watching Bits of Yourself Vanish Down a Dark Hole.

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When the famed ‘Alice” of Alice in Wonderland watched the white rabbit disappear down a dark hole, and then followed him, strange and terrifying things happened to her.

Having Alzheimer’s must be a bit like that.

My mother was a gentle woman with a wry sense of humour.  At the age of twelve she had been sent out to work as companion and general help far from her home.  I never heard my mother express self-pity or regret.  But when Alzheimer’s began to rob her of her recall, I could see it was destabilizing, like having the rug pulled out from under her mental and emotional footing.

I was visiting her and Dad one day and Mom was determined to challenge Dad’s statement that Mom can’t remember things anymore.

Jerry was here today, she told me, looking at Dad to make sure he was listening.

Yes, he came this morning for coffee, Dad confirmed.

We had a nice visit, Mom said, smiling at me.  Dad nodded.

And Jean and Roy are coming over tonight to play cards, she announced almost triumphantly.  Again, Dad nodded.  Yep, he rubbed his hands together anxiously and turned away from us to look out the window.  They sure are.

Mom smiled and nodded her head in satisfaction as if to say Point proved!

She was getting up to make tea when she looked down and saw a well-used pill pack on the table beside her. Frowning, she picked it up, looked it over and said, Whose are these?

They’re yours, for goodness sakes! Dad said, unable to keep the irritation out of his voice.

Mom’s disappointment was palpable.  Her shoulders sagged, her eyes filled with frustration and fear.

It hurt, to be ambushed by her own mind.  To have this common, everyday information disappear down a black hole.

I could see that this sudden loss frightened her, caught her completely unaware. She was blind-sided by a gaping hole in the kind of memory that we all take for granted, that she had taken for granted all her life.

How terrifying to live with a memory thief inside her head!  So much of who we are now is made up of the memories we treasure and share; and so much of our expectation for the immediate present comes from. our short-term memory, from absorbing and retaining the content of recent and current conversations.

As caregivers, sometimes the best we can do is  recognize the trauma of this ongoing loss and admire the coping skills that our Alzheimer’s-inflicted loved ones have developed.

Margaret Jean.

 

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Ten Helpful Things I learned from the Caregiver’s Exposition.

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The Burnaby Support Society’s Caregiver Expo provided a fount of information.  Here are some agencies that are available to us, and some companies that offer services we may choose to use:

  1. NIDUS: is an organization established in 1995 to provide both information and assistance with Representation Agreements.  Nidus now serves as a registry for all the documents that outline your instructions for care should you become no longer capable, due to accident or illness. Materials and information are available on the website:  www.nidus.ca 
  2. CAREGIVER EDUCATIONAL SERIES: Available in Burnaby, this is a six week course presented twice a year on how to alleviate, manage and improve the quality of life for the caregiver and the care-recipient.
  3. PARKINSON SOCIETY OF BRITISH COLUMBIA: Provides free counselling for those who have Parkinson’s as well as their loved ones.  Other services include a network of over 50 support groups province wide.  Contact them at www.parkinsonbc.ca

  4. BONE BROTH: Made from simmering bones for up to 36 hours (in water) is said to reduce joint pain and inflammation, promote strong bones and heal and seal your gut, promoting healthy digestion.  To find out more, or place an order call 604-432-9961.
  5. ALLIES IN AGING:  Family Caregivers of British Columbia (FCBC) provide many supports, one of which is a magazine called The  Caregivers’  Connection.  To sign up for this publication, follow this link:  www.familycaregiversbc.ca

  6. FREE LEGAL CONSULTATIONS FOR SENIORS: Available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver.  To find out more about this resource, call 604-336-5653.  Or learn more at www.SeniorsFirstBC.ca

  7. RESPITE STAYS: Joel Grigg of AgeCare Harmony Court Estate advised me that care-recipients can come to stay at their retirement home for $90 a night.  This includes meals, overseeing their medications, access to facilities and support staff availability.  For the lower mainland, this is a bargain, as well as granting peace of mind to the caregiver during a much-needed break.  For more information go to: www.agecare.ca.
  8. SAIL: Stands for Seniors Abuse & Information Line. 1-866-437-1940 available weekdays 8 a.m. to 9 p.m. with interpretation available on request from 9 a.m. to 4 pm weekdays.  Holidays excepted. All calls are confidential.
  9. LEGAL DOCUMENTS: I learned that Wills cover everything after death, Power of Attorney covers legal and financial matters while you are alive, and The Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf.
  10. CAREGIVER SUPPORT IS AVAILABLE:  Caregiver Support is available in BC, often through the organizations that provide information and support for the care-recipient’s illness, such as the Alzheimer’s society, the Parkinsons’ society, and the cancer society.  There are also community and hospice caregiver support groups.  The best way to find support?  Call your local hospice society offices.

The Caregiver Expo happens every year in Burnaby and the exhibitors offer valuable information from the price of retirement housing to government, private and volunteer  agencies that are in place to assist in the process of caregiving.  Caregiving is demanding and as often frustrating as it is rewarding.  To give and get the most from this journey, it’s important to care for yourself and your loved ones.  These resources will help you to do just that.

 

Chris Florczak, Mathew Court, spousal caregiving

Letter to Chris

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Dearest Chris,

As of yesterday, it has been three years since that fateful day when my cell phone rang and I answered, and you said “Come home, Marg.  Come home NOW.”

I left my groceries on the checkout counter and rushed home.  One last kiss and you were gone.

I wasn’t sad then.  I felt oddly congratulatory.  As if you had escaped.  You surely found freedom.  Freedom from pain, from the physical limitations which your illnesses imposed upon you.

You were Chris, bigger than life and always wise and funny and “up” for us.  Right to the end.

I couldn’t grieve for you.  You were off on a whole new adventure, a new realm.  It was we who found ourselves poorer for your passing, our lives less brilliant and comforting.  Our ration of love depleted.

It’s hard to believe sometimes that three years have passed, and in other ways, it seems like a lifetime ago.

I will always think lovingly of you.  How your greatest pleasure was taking care of people, whether it was our children and grandchildren, or the tenants at Mathew Court, or the kids who worked as painters for you.

It used to annoy me that you would dig into the garbage bin to collect and give refundable bottles to the homeless.  But I was someow proud, too, of that and of how you came with me to help at the Sisters of Atonement, making and serving hot dinners.  Or spreading butter and the nun’s special blend of fish or stale cheese slices or peanut butter on bread for lunch time sandwiches in the big soup kitchen.

I never sit in a church pew without remembering how you took my hand in yours and held it on your thigh.  If I close my eyes I can still feel the smooth fabric of your slacks, the warmth of your body heat.

Whenever we went out, you always made sure we had fun.  You could really dance.  Before your arteries shut down, before your legs went, you danced up a storm.  Jive, waltz, polka; it made no difference.  You were graceful and strong.

You loved NFL football and world history and crime TV.  You loved us.  You loved me.

And that’s a gift that I will always be grateful for.  A gift that I will take to my grave, regardless of where my journey may take me now.

And for that great love, I thank you.  More than I can ever say.

Love always,

Marg.

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.