Category Archives: caregiving responsibilities to self

Alzheimer's, caregiver resources, Caregiver's Expo BC, caregiving responsibilities to self, Uncategorized

Ten Things I Learned from the Caregiver’s Expo

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The Burnaby Seniors’ Outreach Society’s Caregiver Expo provided a fount of information.  It was a pleasure to meet  speak with Helena, following up on our initial phone conversations.  If you weren’t able to attend the Expo earlier this month, here is a cheat sheet of valuable information: ten things I learned that I believe will prove helpful to caregivers.

  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:  http://www.nidus.ca

  2. CAREGIVER EDUCATIONAL SERIES: Is available in Burnaby, through the Burnaby Seniors Outreach Services Society.  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.  More info is available at : https://www.bsoss.org/index.php/contact-us

  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 http://www.parkinsonbc.ca

  4. BONE BROTH: Is made from bones from organically raised and humanly butchered cows, the bones are simmered in water for up to 36 hours. The resulting broth 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 to place an order call 604-432-9961.

  5. ALLIES IN AGING:  Is the mantra of the Family Caregivers of British Columbia (FCBC).  This organization provides many supports, one of which is a magazine called   The  Caregivers’ Connection.   To sign up for this publication, follow this link: http://www.familycaregiversbc.ca

  6. FREE LEGAL CONSULTATIONS FOR SENIORS: Is available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver.  To find out more about this priceless resource, call 604-336-5653.  Or learn more at http://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 necessary medications, full access to facilities along with support staff availability.  For the lower mainland this is a great bargain; it can grant peace of mind to the caregiver during a much-needed break.  For more information go to: http://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, except for holidays. All calls are confidential.

  9. LEGAL DOCUMENTS: I learned that

    1. Wills cover everything after death,

    2. Power of Attorney covers legal and financial matters while one is alive,

    3. And a Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf if you are incapacitated due to illness or accident.  For more information, contact Nidus, (see #1 on this list) or use your free 1/2 hour legal consult (#6).

  10. CAREGIVER SUPPORT: 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 Parkinson’s society, and the cancer society.  There are also community and hospice caregiver support groups which are often free. Contact Fraser Health Services or Vancouver Coastal Health to arrange for a free assessment of the services for which you qualify, and a determination of costs.

    And I cannot say this often enough: 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 ranging 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 often frustrating as well as rewarding.  To give and get the most out of this journey, it is important to care for yourself.  These resources will help you to do just that!

Margaret Jean.

 

caregiver challenges, caregiving and attitude, caregiving responsibilities to self

Caregiving: Reflecting on Attitude

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What is of greatest benefit for a caregiver?

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.

 

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 dilemmas, caregiving, caregiving responsibilities to self, patient identity and caregiver freedoms, spousal caregiving

Losing a Sense of Myself–Who’s Responsible? Caregiver? Or Patient?

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So I seem to think Chris, who is ill, has more freedom than I do as caregiver.  But surely that is an oversimplification.

After all, he is a man, who, with diabetes and severe coronary artery disease, still gets up out of bed once or twice a week and goes out to appraisals, to check how things are going on the work site.

A man who  always has and will still get breakfast if I have a morning meeting, or make himself a sandwich if I’m having lunch with friends.

Who really loves to have his coffee brought to him in bed, who wants me to sit and watch TV with him. Who in the past has enjoyed helping prepare and share meals.

And he seems to appreciate the cleaning and laundry that go with keeping a place up.  So it’s not like he’s taking advantage of me.

Alma Vaugeois, a friend and clinical counselor, talked about Chris.  Although he is very sick, he has not made illness his primary identity, she told me.

The way he has constructed his identity, including his illness but not entirely focused on it, there is a generosity in him.  That and his deep sense of humour make him strong enough to allow you to be you, she said.

This will not be every caregiver’s experience, Alma added.  Not everyone is like that.  Some people who are very controlling will not be able to give their caregivers that support.

So it’s not about Chris, this sense of losing myself to the suction of the demands of his care.  It’s more like I’m not making quite the right decisions.

That’s the issue that needs a closer examination.  Now.  Before his condition deteriorates and his needs escalate.

Yours truly

Margaret Jean.

caregiver challenges, caregiving, caregiving responsibilities to self

Caregiver: Where Did My Life Go?

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For twenty-one years now I have lived with a man who daily reminds me he is dying.

This has led to a split life for me.  I find myself constantly in conflict, constantly questioning my priorities.  What should I do next?  Spend time with him?  Or get on with my work—whether it be writing, housework, or bookkeeping.  Or time with friends.

I talked with clinical counselor, Alma Vaugeois about the  frustration of constantly having to forego choices unrelated to the caregiver role.

Having to constantly focus on the person being cared for can mean giving up aspects of one’s own life, Alma explains.

Because all of your energy is going into him, there will be a sense of loss for yourself.

This rings true with me.  I do feel that I have somehow lost ‘me’ somewhere in that deep chasm between the immutable ‘now’ and the looming ‘then’.

Somewhere between “life with Chris”and the looming future of “life after Chris” my own life seems to have slipped away.

It is ironic that even as delicate as his health is, he can travel with his children without his timelines being affected by any aspect of my life, whereas I have put off a number of trips in consideration of his next procedure, or his present fragile condition.

And I ask myself, are these the ‘fear based’ decisions that self-help gurus preach against?  Or are they merely practical considerations in light of his medical history and current situation?

 I need to figure out how to carve out time for me, to see some aspect of myself as blooming, even if only in inner space.

I need to find a way to feed my passions while still caring for him to the best of my ability.

Because if I toss my entire life to the wayside in my intent to care for him, I will become resentful and bitter.

I will fester in the role of caregiver.  And me festering?  It ain’t a pretty picture!

To learn more about Alma Vaugeois, go to 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.

caregiver challenges, caregiving responsibilities to self

Caregiver: Your Diagnosis is Also My Dilemma.

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With this diagnosis, the admission that all that can be done now is medicate to make him more comfortable in a deteriorating condition, his world has radically altered.

And shock waves reverberate in mine.

For twenty one years, ever since his first heart attack, this man has told me every day that he is dying.  Over the years I have come to take it lightly.

We’re all dying, I might reply.  Or:

For someone who’s dying, you’ve outlived an awful lot of people.

But now I must take this notion seriously.  No more light hearted bantering.  He will grieve. His response to this diagnosis will be an attitude he owns.  It is not for me to dictate or project.

And as for me?  As selfish as it seems, I must be practical. Find out exactly how much money I will have in pensions each month, make projected budgets, determine which things need to be bought out or paid off now while there is still another income coming in.

There are funeral expenses.  How much will that be?  Will the life insurance cover it?  What about our debt?

He has agreed to cremation but I know in his heart he wants to buried and we do have the cemetery plots.  Will I be able to afford to bury him and still have enough to tide me over for the few months before the survivor’s pension and the income supplement kick in?

I need to be prepared.  And to help Chris prepare.  God help us both.

Yours truly,

Margaret Jean