Category Archives: caregiver dilemmas

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

caregiver challenges, caregiver dilemmas, caregiving on the holidays

Ten Ways to Reduce Stress in a Caregiver’s Christmas.

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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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.)

  8. 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.

  9. 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.

  10. 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.

caregiver challenges, caregiver dilemmas, grief counselling, Uncategorized

Local Hospice Societies Offer Caregiver and Bereavement Support.

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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.

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caregiver dilemmas, Grieving

Caregiving & Grieving: Close Companions.

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A Caregiver’s life seems overwhelming at times.  Most of the time, in fact.

Some of us try to juggle work and family and caregiving another relative, God help them. Others just try to make it through another day of being inside, sitting, trying to get a grip on what can be let go of, and what needs to be done.

It’s exhausting and all-consuming, caregiving.  And at the end of it all?  Grief swoops in.

I’m finding grieving different from caregiving. Less constant in its demands I thought.  Grief not only comes and goes, but I’ve found it can disguise itself as some other emotion.

I thought because my husband’s health was in decline for so many years, my grieving process would be short, and not so intense.  I didn’t break down sobbing at the funeral.  I didn’t go home and weep over his clothes, his bed, his shoes.  I just wanted everyone to go home so I could be alone in the flower-fragrant silence of my home.  I wanted to be alone with thoughts of him.

And then suddenly seven months later I was overwhelmed with emotion.  Emotion which I misplaced.  It was like being on a roller coaster ride: what you tell people is a thrill is really terror.  And I was not recognizing my fear.  Life was suddenly entirely and only my responsibility.  And I wanted to be safe.  I desperately wanted someone to look after me.  Like Chris had.

z Chris & Marg Marg's 40th birthday house on 76th
I wanted to be safe.  I wanted someone to look after me.  Like Chris had.

Fortunately friends, family and a group called Griefshare helped me sort it all out.  Helped me see that I am grieving, deeply and furiously the loss of my husband of thirty years.  And in starting a new relationship all I did was complicate the process.  Hurt others.

Because I didn’t recognize, couldn’t own my grief.

Adam women are strong, Mom always used to say.  I hope that’s true.  I hope that like it says in the book of James, chapter 4, suffering builds endurance and character.

Just like knowing how your caregiving days are going to end doesn’t make the process any easier, knowing what James has said doesn’t make grieving any easier, either.  But like caregiving, there is a sense of pride in honoring the process.

If you need help, like I did, contact your local Griefshare group-note, it is faith-based.  Other alternatives?  Contact your local hospice society or funeral home.  They should be able to help you find a group that will fit your needs.

 

caregiver challenges, caregiver dilemmas

Caregiver Attitude–The Courage To Change The Things I Can.

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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.

caregiver dilemmas, caregivers assertiveness

Caregivers: The Best Defense: Five Steps to Being ProActive in Your Patient’s Care.

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How many times have you noticed something you felt was unnecessary, unfair or just plain wrong, in terms of the care of your patient?

When you’re already exhausted, it’s easy to give in even though in your heart you want to fight like mad.  You simply don’t have the energy to face what seems like a sea of paperwork and stand up to an equally daunting herd of bureaucrats.  The secret is to be armed with information.

Here are five simple rules that will help you accumulate that information so that you can deal with stressful situations successfully.

  1.  Take notes.  Date them.  Note who the participants are.  At every meeting with a doctor, specialist or clinician, note down key terms and what is being said about them.  This applies not only to medical concerns but also to status definitions and treatment options.  I preferred to keep these notes in one notebook, so that I wasn’t forever searching for slips of paper to find the information.  This will help you feel more comfortable if it becomes necessary to challenge a medical decision later.

  2. Get copies.  Ask for any piece of paper generated about the condition of the patient. You may not get it, but you can ask for a copy.  I found doctors were usually willing to have an assistant photocopy documents for me. I even got ECG printouts when I asked for them.

  3. In our province (BC) you also have the right to a printout of any lab test results requested by your doctor.  However you must ask for the results to be given to you when you submit the requisition to the lab..The lab can give you a card with your name and the internet address where you can access your results, or you can have them mailed to you.

  4. Photocopy the original prescription requests.  I used to ask the pharmacists to copy the script I gave them.  This allowed me to compare the prescription bottle dosages to the original doctor’s orders.  It also allowed me to check against what I already had at home to recognize changes the doctor may have made.  In rare cases, it served to help me recognize (with the help of the pharmacist) that the prescription was either inaccurate or inadequate.  I used Costco Pharmacy, and in my opinion, if they will do these things, any full priced pharmacy should.

  5. Don’t back down. If you have gathered all the information and know you are right, don’t yield. Be calm, courteous but insistent.  Do your research. If you are lucky enough to have a nurse or doctor in the family discuss the issues with them.  They may put your mind at ease or indicate possible strategies for intervention. Then make phone calls. Write letters. But always maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands.  Use phrases like “It seems that this is the case,” as opposed to “You did this”.

Alzheimer's, caregiver challenges, caregiver dilemmas, caregiving, caregiving and dementia, caregiving beginnings

Caretaker, Caregiver?  

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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.”

caregiver challenges, caregiver dilemmas, caregiving, decision making

Caregiving: The Decision Making Process Up at Three, Watching True Crime TV.

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When you are caregiving someone who is very ill you feel as if even the slightest decision might carry the direst consequences.  And there are so many decisions to make!

Chris had been lying in bed awake for most of the night.  I finally got up with him about three.  Made him a coffee at four.  Watched true crime TV with him til five.  Helped him change his T-shirt wet from sweat, sponged him off, refilled his water jug by six in the a.m.

He would sleep, but he is coughing.  Coughing up phlegm.  Coughing himself awake if he happens to doze off.  He wants to try to sleep.  I am wide awake.  I step out of the room.

On this particular night, I find myself flustered.  Unable to make even the simplest decision.  Like whether or not to go in and close the bedroom window.

Experts at the Ethics Resource Centre online give six steps in decision making.

  • Define the problem.
    • Okay.  Chris is coughing and he needs sleep.
  • Determine a number of solutions.
    • Hmmm.  Cough syrup, let him be, change his position.
  • Evaluate these solutions to find the best.
    • Well, let’s see:  Cough syrup may interfere with his meds.  Changing his position could wake him up.
  • Make the decision:
    • Got it–leave him be. This solution is neither intrusive nor likely to affect his meds.
  • Act on it.
    • Okay, that means go do something else besides standing in the hallway listening to him breathe.
  • Evaluate the results.
    • He seems to be sleeping just fine.

I spent a lot of time on a seemingly insignificant decision.  Stress can do that to you.

When you live with someone who is terminally ill, when you feel personally responsible for their well-being, each decision seems to carry a sort of life and death weight.

I have a lot of trouble with this sometimes, because I always need time to think things through.

What I learned on this night is this:  Based on the information above, it seems like needing time is a good thing.  I guess it’s just a question of using that time to properly address the issue.

If like me, you’d like to read more about the decision making process at the Ethics Resource Centre, please go to:

http://www.ethics.org/resource/plus-decision-making-process

Yours truly,

Margaret Jean.

Asperger's, caregiver challenges, caregiver dilemmas, housekeeping bedsitting and caregiving, spousal caregiving

Caregiver More Housekeeper or Bedsitter?

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Some days?  As a caregiver, I confess I’m a lot more housekeeper than bedsitter.

I do believe that cleanliness is important when someone is chronically ill. And I like order.  Order calms me.  And I feel it adds to the patient’s feeling of serenity when his surroundings are clean and organized.

And, being a caregiver, I don’t get to do much walking, exercising, playing games these days.  I like the movement in washing floors, folding laundry, sweeping.

I asked my friend, Alma Vaugeois about this.  Alma, a clinical counsellor, told me that’s one reason some people may find comfort in housekeeping tasks.

There’s a release of physical tension, Alma, also a Yoga instructor, noted.  Your body’s moving, stretching, reaching. 

I confessed to Alma that I had been washing the tile floors on my hands and knees ever since I found out that doing so made me stiff and sore.

To me this means those muscles need to be used, I said in my Asperger’s way, so now I make a point of extending my arms and torso, really working them when I wash the floors.  Alma nodded.

My kids think I’m crazy, I added.

Alma laughed.  Housework is very physical, she said.  And you can focus completely on the task on hand.  This is mentally freeing as well. So for you, doing the floors or doing any housework gives you both a physical and mental release.

I have always liked the feeling of a clean and tidy home; polished furniture, clean kitchen, flowers on the table.  But after talking to Alma about it?  I’m going to enjoy the pleasure I now know they give me.

The important thing to remember and honour?  Is how much Chris wants me by his side. As things get closer to the end, I know I’ll be doing less housework and more bed sitting.

To learn more about Alma Vaugeois, please go to:

www.almavaugeois.com

Yours truly,

Margaret Jean.