Tag Archives: caregiver guilt

caregiver challenges, caregivers' feelings of failure

When Caregivers Feel They’ve Failed…

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This month is the birthday month of my twin brothers, Jerry, who is still with us (love you more!) and Jack, who passed away suddenly three years ago.  This post is written by his widow, Kamla.

Their two youngest children were in their late teens. Jack was in his fifties, Kamla much younger.  The couple everyone admired, they had a huge social circle.  Kamla is a nurse.  Jack was a trucker and later a crane operator. He was the youngest in our family, one of identical twins.

We all  thought he was in amazing shape for his age. Then three years ago, he coughed up blood at work one day.  Tests revealed an aggressive, advanced cancer.  He died a month later.

May 9th was his birthday.  The following (republished with permission) are passages from an email Kamla sent me recently. They are posted in honour of her love for him and his memory:

Sorry I’ve taken so long to reply!  I actually was thinking a lot about your request of an “expert” nursing point of view.  I honestly have to say I’m no expert. 

When Jack was diagnosed I felt so far removed from being a nurse.  I was so numb from my disbelief and denial that I really couldn’t function or think rationally. 

Somehow all I could think about was how devastated and hurt I was.  I could not even face what was happening and that denial has stayed with me for a long time.  It has only been after 3 years that I actually can admit to myself that Jack is gone. 

I have such a heavy sadness in my heart. I still want to believe that he will be back.  I miss him so much.  I felt such a profound loss that in the first year I couldn’t even face my life.  I went through the motions but can barely remember that first year. 

The second year I realized how I needed to be there for the kids. That at least gave me purpose.

But I still often found myself really needing to talk to Jack as I really felt that he was always the better parent and I needed his advice and help. He was such a natural person at being able to help me with decisions and putting things in to perspective. 

 This last year has found me finally able to talk to someone about my grief.  My counsellor is wonderful. We had to start with dealing with my disbelief as it is still there. 

I cannot describe how much I loved Jack.  He was like part of me and now I do not feel whole. He was my best friend, my hero, my mentor and my true love. 

 I feel that as a caregiver I failed Jack as it just all happened too fast.  My thoughts are with you and Chris and I love you both.

I feel a great empathy for Kamla.  She was no failure!  Life just didn’t give her time to fully be a caregiver.

Yours truly,

Margaret Jean.

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.

caregiving, caregiving responsibilities to self, caregiving spouses, spousal caregiving

Spousal Caregivers: Grieving Life Changes?

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I have a good friend, Joy.  The other day we were having tea and something I said, I can’t remember what, prompted her to say, “Maybe you’re grieving Chris already.  Is that possible?”

 I had been an hour late for our meeting because I read the clock wrong.  Not once, but several consecutive times as I glanced at it.  And when I got there, realizing how late I was, I burst into tears.

 My husband has the most pervasive case of coronary artery disease his cardiologist has ever seen. Chris had his first big heart attack in 1993 and since then, events and procedures have  constantly reminded us of the fragility of his life.  That’s stressful.

It’s hard to write about this anxiety, about how it impacts me.

What spousal caregivers relinquish from their own lives in caring for their spouses, can create a sense of loss. 

Added to that is the certain knowledge the future is going to hold something entirely different for us—to a large extent, an unknown quantity.

Alma Vaugeois, a clinical psychologist and counselour, tells me caregiving for the terminally ill is living in the uncertainty of what is going to happen and when.  

People feel helpless in the face of the unknown. They can also feel loss long before anyone passes, Alma told me.  

For me, these voluntary and involuntary life changes create a wholly natural and very unwelcome sense of loss.

Parts of our lives must be let go in order for us to do what in all good conscience we feel we must, what in our love for our spouses we are driven to do.

We all know what must lie ahead in terms of our spouse’s condition.

And people feel guilty thinking about the future, Alma related.

In short, we deal with guilt and grief while caring for our loved ones.

Perhaps that is what Joy saw in me that day.  Grieving for what I am losing even now, while he is still living.

 I wouldn’t change my choices.  But it seems I can’t do anything about the emotional fallout that accompanies them, either.

And I wonder how many others have experienced this loss?  And how many have covered up these feelings out of guilt or shame?

You can learn more about Alma from her website at: www.almavaugeois.com/

Yours truly,

Margaret Jean.

caregiver challenges, caregiving, caregiving responsibilities to self

Caregiver: Planning for Life After

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One of the necessary evils of being your spouse’s caregiver is having to also be the one who plans for the ‘after’ life, for life after their departure.

Chris wanted to be part of this procedure partly I think to put his mind at ease.

 In Canada, government pensions including the payout of the one-time death benefit are managed by a department called Services Canada.  Yesterday, Chris and I went to their offices.

We learned what will happen in the likely case of him dying before me.  Although, honestly, I could go first—it is never a given.

 However, according the agent at the Services Canada office, if I am left on my own my financial resources will be pretty skint.

 I’ll have little more monthly income than my rent.  The actual dollar figure is fairly scary – such a small number.

And yet, I can’t help but feel that I will manage.  I should get called back to work for tax season every year.  And the money I make in this three month period is sufficient to pay my rent for the year.  If I save it, and use it for only the rent, I will be perfectly fine.

 You see, because my income will be low, in my province of BC, I will have no medical premiums to pay.  I will also get a good tax refund every year.

The tax refund will cover my car insurance for the year and since my car is paid for, I only have to shell out for gas and maintenance.  And since we live so close to all amenities including the buses, these expenses should be negligible.

 And that means my pensions should easily cover everything, which seems incredibly generous to me.

 Chris was shocked.  I told him not to be. I will be fine.  Just fine.

Yours truly,

Margaret Jean.