Tag Archives: spousal Caregivers

Alzheimer's, Alzheimer's Reading list, caregiver challenges, Uncategorized

Alzheimer’s Reading List

March 12, 2016 Margaret Jean Leave a comment

A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.

I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.

This is her list of titles:

Before I Forget by B. Smith and Dan Gasby.

Come Back Early Today, by Marie Marley, Ph.D.

Slow Dancing With a Stranger by Meryl Comer.

The Long Hello by Cathie Barrie.

To Johnny With Love by Dagmar Christine Albert

My Mom, My Hero by Lisa R. Hirsch.

When Breath Becomes Air by Paul Kalanithi.

She also recommended two books that are fiction based on fact:

Inside the O’Briens by Lisa Genova and

Turn of Mind by Alice La Plante.

Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.

Thanks, Donna, for sharing.

Yours truly,

Margaret Jean.

caregiving spouses, spousal caregiving, terminally ill and work

Spousal Caregiving: The Most Stressful Situation?

May 27, 2015 Margaret Jean Leave a comment

When over 6,000 Canadian caregivers were asked to rate their stress levels, those caring for spouses ranked themselves higher on the stress scale than those caring for children or parents.

In fact, those caring for parents ranked themselves lowest. Reading other caregiver websites, I can tell you this is not always the case!

And there are exceptions to every rule.

Younger, employed persons found care giving more stressful in general with the pressures of the normal duties of work and home being compounded by the added duties of caring for someone.

While planning ahead is given as a stress-reliever, we all know from Kamla and Gemma’s articles that this is not always possible. These situations can descend on us in a moment and change our lives forever.

Other tips? Get informed not only about the illness the loved one has, but also about care giving. Find support groups and respite resources in your area. Take time to take care of yourself. Acknowledge your feelings. Ask others to help.

Accept that you are not always going to be happy in your situation. Once you do, dealing with those feelings will be easier.

In my experience? People of faith have an advantage in finding acceptance of their situation. As one spousal caregiver put it: Once I learned that I had to relinquish this control that I thought I had over our situation, to God, it took a lot of the pressure off.

Yours truly,

Margaret Jean.

To read the source articles go to:

http://www.reuters.com/article/2015/05/26/us-intergenerational-support-stress-idUSKBN0OB2FJ20150526

http://www.focusonthefamily.ca/marriage/midlife-marriage/spousal-caregivers-when-chronic-illness-crashes-into-your-marriage by Todd Foley.

Alzheimer's, caregiver challenges, caregiving and dementia, caregiving spouses

Caretaker? Caregiver? Part 2

April 22, 2015 Margaret Jean Leave a comment

Part two of a continuous narrative by guest author, Gemma Tammas.

One morning I found Tom tied down in a wheelchair in front of the nursing station.

His head dropped on his chest, saliva was dripping from his mouth.

“He was climbing out of his bed,” the nurses told me, “we had to tie him in the wheelchair and roll him out to the hall to keep an eye on him.”

“All these medications make him crazy,” I argued and from there on, I had no choice but to stay with him during the nights also.

After two long weeks, still feverish, losing half of his weight with gall bladder infection and against his doctor’s advice, I brought him home.

He was weak, not able to stand by himself. With my brother’s help, we would carry him to the bathroom, wash him on his bed and feed him, forcing the food down as he had no appetite.

Slowly he recovered his strength, what was left of it, and our pilgrimage to different specialists began. After six months and countless tests, he was diagnosed with Parkinson disease, Alzheimer and hypothyroid. As he already had a pacemaker, visiting his cardiologist three times a year was now topped with regular visits to his neurologist.

His medication ‘regime’ had to be set, and after six months, a routine was established. To help his memory and to help him to sleep better two more medications were added.

We follow a stringent schedule for his eating as he can only eat an hour before or two hours after with certain pills.

I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.

Now, from 7am till 10 pm in the evening he is on a strict schedule.

When I wake him up at seven o’clock to take his first dosage – he kisses my hand.

But at night he seems more confused. When I try to put eye drops in his eyes for his glaucoma, I have to force his eyes open because he opens his mouth instead.

caregiver challenges, caregiving, spousal caregiving

Spousal Caregiver’s Dilemma: Unpredictable Spending.

March 15, 2015 Margaret Jean Leave a comment

I think I’m hoarding.

Although research tells me I’m not. Symptoms of hoarding include:

acquiring excess
an inability to part with it. (I have given away much in care packages to others who are in more straitened circumstances than I find myself.)
unsanitary conditions (never in my place) and
clutter–(only occasionally in my office, and that’s papers!)

So I’m not technically hoarding. But I don’t know when Chris is going to succumb. But I do know that when he does? Financially I’ll be, well, let’s just say less than comfortable.

So I’m storing up staple items for when that day comes.

I’ve never had any trouble getting a job, but at my age? Let’s just say employment options are limited.

But I tell myself there will be less need to work. Less food consumed. Fewer commodities required.

And I am resourceful. For example, I’m an excellent cook who has always enjoyed the challenge of making a tasty meal out of just about anything I find in the kitchen.

So why is it so hard for me to make a list and buy only what is on it? Do other women in a similar position find themselves doing the same thing—buying ridiculous amounts of food and other household staples?

How common is it for women about to become widows, to stock up? Does it happen only in income-restricted families?

I wonder if the opposite is true; if the fear of being income-restricted after the spouse’s death leaves some women unable to spend money, even for necessities?

I need to introduce a new mantra to my grocery shopping days: I have enough. I have plenty. How fortunate I am to have enough.

Yours truly,

Margaret Jean.

caregiver challenges, caregiver dilemmas, caregiving, caregiving spouses, spousal caregiving

Precarious Health and Exercise: A Caregiver’s Dilemma

March 8, 2015 Margaret Jean Leave a comment

The doctor repeatedly tells Chris he must walk. Chris won’t. This is a caregiver’s dilemma.

Because I know he should exercise? But I also know how precarious his health is.

He could keel over any moment. He could die anywhere. In bed for instance. He could die while out and about. He could die in the kitchen getting a sandwich.

But he looks strong. Like his father, he has a big chest and thick rounded shoulders, a brute of a back.

Although his illness has reduced his size somewhat, it has not diminished the man.

His sense of humour is still keen, and he still has enough of a temper to direct a spate of comments at another driver, or people on TV–a politician or a football coach.

Keeping that powerful inner man intact concerns me more than his physical health. Do other caregivers feel that way about their ailing charges? Or is it just me?

After all, if the best cardiologists, and his cardiologist is one of the best, cannot cure him, then far be it from me to try. So I feed him carefully, help him keep his appointments and encourage him to stay calm and keep moving.

Which is why, when I am perfectly capable? If he offers, I will lie in bed and let him get me a cup of tea. Or make myself stay at the computer when I hear him hobbling around in the kitchen and let him get his own sandwich.

The risk I take when I force him to move like this? Is that it could be the moment in which his body succumbs.

There is a horrible guilt associated with even the possibility of this. But he does need to move. And because of the pain, he won’t unless hunger or need drives him.

Should he succumb? The only comfort I would have to offer myself is this: probably he could have been asleep and it would have happened anyway.

I have to believe that. Or I would never let him leave the bed.

Yours truly,

Margaret Jean.

caregiver challenges, caregiving and dementia, caregiving spouses, spousal caregiving

Post-Valentines Reflections of a Caregiver.

February 18, 2015 Margaret Jean 2 Comments

Thirty years ago, Chris impressed me, too. And I’m still impressed.

Valentine’s Day is special for me as a spousal caregiver. Because I know if I was looking after someone other than Chris? Maybe I wouldn’t have the same attitude.

I feel a very deep concern for those who care for loved ones with dementia. It is not easy to get time away. It is not so companionable to constantly be with their charges. These caregivers face a much more challenging situation and my heart and admiration go out to them.

One woman told me how she fell ill and had to be hospitalized herself. Her husband became violent with the substitute caregiver the agency sent.

Because I wouldn’t be there to serve him, she said.

I thought ‘serve’ was a revealing choice of words. It would never occur to me to describe what I do for Chris as serving him.

I’m lucky—Chris is so good-natured. If I put off making breakfast while I’m writing? He’s fine with it.

You might say, well what choice does he have? Who will look after him if you don’t? And you’d be right. But a lot of men and women as their health deteriorates? They get mean. Spiteful. Bitter.

I take pride in caring for him, just as all those years, he took pride in providing for and caring for me.

I”m lucky because he likes me to look after myself, even if it means an hour or so away from him—to see a friend, do a little shopping or go for a mani/pedi.

He exclaims with pleasure when I buy fresh cut flowers for the house. A lot of husbands would consider it a waste of money.

Looking after Chris? I’m glad I fell in love with him thirty years ago. He faces his situation with courage and humour, and when he wraps me in his arms? It’s still the best feeling in the world, Valentines Day and every day.

Yours truly,

Margaret Jean.

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

Spousal Caregivers: Grieving Life Changes?

February 10, 2015 Margaret Jean 1 Comment

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.

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.

I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.

This is her list of titles:

Before I Forget by B. Smith and Dan Gasby.

Come Back Early Today, by Marie Marley, Ph.D.

Slow Dancing With a Stranger by Meryl Comer.

The Long Hello by Cathie Barrie.

To Johnny With Love by Dagmar Christine Albert

My Mom, My Hero by Lisa R. Hirsch.

When Breath Becomes Air by Paul Kalanithi.

She also recommended two books that are fiction based on fact:

Inside the O’Briens by Lisa Genova and

Turn of Mind by Alice La Plante.

Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.

Thanks, Donna, for sharing.

Yours truly,

Margaret Jean.

When over 6,000 Canadian caregivers were asked to rate their stress levels, those caring for spouses ranked themselves higher on the stress scale than those caring for children or parents.

In fact, those caring for parents ranked themselves lowest. Reading other caregiver websites, I can tell you this is not always the case!

And there are exceptions to every rule.

Younger, employed persons found care giving more stressful in general with the pressures of the normal duties of work and home being compounded by the added duties of caring for someone.

While planning ahead is given as a stress-reliever, we all know from Kamla and Gemma’s articles that this is not always possible. These situations can descend on us in a moment and change our lives forever.

Other tips? Get informed not only about the illness the loved one has, but also about care giving. Find support groups and respite resources in your area. Take time to take care of yourself. Acknowledge your feelings. Ask others to help.

Accept that you are not always going to be happy in your situation. Once you do, dealing with those feelings will be easier.

In my experience? People of faith have an advantage in finding acceptance of their situation. As one spousal caregiver put it: Once I learned that I had to relinquish this control that I thought I had over our situation, to God, it took a lot of the pressure off.

Yours truly,

Margaret Jean.

To read the source articles go to:

http://www.focusonthefamily.ca/marriage/midlife-marriage/spousal-caregivers-when-chronic-illness-crashes-into-your-marriage by Todd Foley.

One morning I found Tom tied down in a wheelchair in front of the nursing station.

I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.

When I wake him up at seven o’clock to take his first dosage – he kisses my hand.

I think I’m hoarding.

Although research tells me I’m not. Symptoms of hoarding include:

acquiring excess

an inability to part with it. (I have given away much in care packages to others who are in more straitened circumstances than I find myself.)

unsanitary conditions (never in my place) and

clutter–(only occasionally in my office, and that’s papers!)

So I’m not technically hoarding. But I don’t know when Chris is going to succumb. But I do know that when he does? Financially I’ll be, well, let’s just say less than comfortable.

So I’m storing up staple items for when that day comes.

I’ve never had any trouble getting a job, but at my age? Let’s just say employment options are limited.

But I tell myself there will be less need to work. Less food consumed. Fewer commodities required.

And I am resourceful. For example, I’m an excellent cook who has always enjoyed the challenge of making a tasty meal out of just about anything I find in the kitchen.

So why is it so hard for me to make a list and buy only what is on it? Do other women in a similar position find themselves doing the same thing—buying ridiculous amounts of food and other household staples?

How common is it for women about to become widows, to stock up? Does it happen only in income-restricted families?

I wonder if the opposite is true; if the fear of being income-restricted after the spouse’s death leaves some women unable to spend money, even for necessities?

I need to introduce a new mantra to my grocery shopping days: I have enough. I have plenty. How fortunate I am to have enough.

The doctor repeatedly tells Chris he must walk. Chris won’t. This is a caregiver’s dilemma.

Because I know he should exercise? But I also know how precarious his health is.

He could keel over any moment. He could die anywhere. In bed for instance. He could die while out and about. He could die in the kitchen getting a sandwich.

But he looks strong. Like his father, he has a big chest and thick rounded shoulders, a brute of a back.

Although his illness has reduced his size somewhat, it has not diminished the man.

His sense of humour is still keen, and he still has enough of a temper to direct a spate of comments at another driver, or people on TV–a politician or a football coach.

Keeping that powerful inner man intact concerns me more than his physical health. Do other caregivers feel that way about their ailing charges? Or is it just me?

After all, if the best cardiologists, and his cardiologist is one of the best, cannot cure him, then far be it from me to try. So I feed him carefully, help him keep his appointments and encourage him to stay calm and keep moving.

Which is why, when I am perfectly capable? If he offers, I will lie in bed and let him get me a cup of tea. Or make myself stay at the computer when I hear him hobbling around in the kitchen and let him get his own sandwich.

The risk I take when I force him to move like this? Is that it could be the moment in which his body succumbs.

There is a horrible guilt associated with even the possibility of this. But he does need to move. And because of the pain, he won’t unless hunger or need drives him.

Should he succumb? The only comfort I would have to offer myself is this: probably he could have been asleep and it would have happened anyway.

I have to believe that. Or I would never let him leave the bed.

Yours truly,

Margaret Jean.

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.