Category Archives: caregiving spouses

Spousal Caregiving: The Most Stressful Situation?

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.

Caregiver Reflections

Reading Kamla’s post, I recognize how precious my time with Chris was.

How lucky I was as a long term caregiver to still be in a relationship with someone who loved me.

There were times, I admit, when I was all too focused on getting the laundry done or the fridge cleaned out.  When keeping busy was my way of ignoring the fact that I was not free to go outside into the fresh air; to go for a walk, to saunter down to Starbucks and read a paper while sipping a latte.

I prayed a lot.  “Pray for courage, Maggie.” Father Obiwumma advised.  “I pray for grace,” I said.  Grace to accept that this was my decision.  Grace to be cheerful, loving, helpful.

Grace to remind myself that being entrenched in this apartment 23 of 24 hours a day was not anyone’s fault.  It was my choice.

It’s amazing how hard it can be to remember that sometimes.

Sometimes, I’d get cranky.  Then Chris would crack a joke; clown for me, make a face or deliver some harmless, lewd comment.  And we would laugh. And in that moment I would truly know how fortunate I was to be with this man on this final journey, to be his chosen companion.

We sat together for hours every day, holding hands, watching movies, Chris giving me a constant flow of data about the actors and locations and sometimes even the history behind the movies.  He cried when brave men did great things.

He cried when Doc Holliday died in Tombstone.  Not sobbing.  Just wiping his eyes and huskily asking for a coffee or fresh water.

After the TV was turned off, we’d say the rosary together.  It was what he wanted.  I would kneel beside his bedside and we would say the decades together.

I was lucky to be in that relationship right up to the end.  Lucky to have all those months and years to nurture and hold him, to understand that I was losing him.

I don’t know how Kamla copes, after losing Jack so suddenly.  How people who lose their loved ones in an accident or sudden illness or suicide manage their grief.

I miss Chris.  Miss him terribly.  But I can’t help feeling, reading other caregiver websites, that somehow, I was one one of the lucky ones.

yours truly,

Margaret Jean.

Caregiver? Caretaker? Part 3.

Final Instalment of a continuous narrative by Gemma Tammas.

While we are regularly visiting his doctors, two more inflections added to his failing health. Hearing loss, and cataracts. Many times, I have to shout at him because his hearing aid is not in its place.

Only yesterday, he was telling me about a woman, who was interviewed on the news, saying she traveled to San Diego to learn about a diet. Tom told me that woman became a nun.

“That’s what she said,” he insisted and it was no point to dissuade him otherwise. It wouldn’t have changed his mind anyway.

I help him to read as his eyes get tired and every phone call fell on my shoulders as Tom’s voice became scratchy, mumbling his words.

Losing his health big time along with his driver’s license, still he is asking “How can I help you?”

When I give in and tell him what to do, he forgets it and I have to control myself not to tell him off.

His memory is failing but he still remembers our phone number in Hungary fifty years ago.

When we are going shopping, he gets out of the car and starts shuffling in a different direction. I have to run after him grabbing his hand.

My life, our life, changed.  We had to give up small pleasures like walking in the field for an hour with our dog, Heidi, going to the seashore for a stroll.

Heidi, our ten year old Rottweiler, recently became paralyzed from her waist down, unable to take only a few steps before she collapses, then I have to lift her up and put her on her feet.

Some days I question myself. Why, why me who is burdened to do all these things. Then I look at Tom, and I see in his eyes the suffering, the hopelessness, but still a tremendous willpower to live.

Then I pat Heidi’s head and I feel her energy passing through my body, and even in her crippled condition, she gives me strength to go on, to take every day as it comes and enjoy it to the fullest.

My heart aches, when I see both in reclining health, but still, I feel fortunate to able to take care of them.

Caretaker? Caregiver? I rather call myself a wife and mother.

Caretaker? Caregiver? Part 2

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.

 

Chris–November 1942 to March 2015

Chris 4

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This is the man who was the love of my life for thirty years.  He will be deeply missed.

In memory of him, and in aid of caregivers everywhere, I intend to continue my blog discussing and hopefully shedding light on the many issues and challenges that caregivers face.

The articles will continue to be about my journey with Chris in the last nine months of his life, and include other caregivers I have met along the way, their associations, resourcefulness, dilemmas and solutions.

I hope you stay with me.

Yours truly,

Margaret Jean.

Caregiving–Hard on the Butt.

Come and sit with me, Chris laments.

I never dreamt caregiving would be hard on the butt.  Or that it would sometimes result in unusual anxieties.

The kitchen table is not cleared of the breakfast things, the garburetor is full of peels and rinds from this morning’s juice making, and the other half of the sink is full of soaking pots and bowls.  This makes me anxious. I like to have everything nice and tidy before I do anything else.

As a child I was taught that work had to be finished before such pleasures as reading, watching TV or playing could be indulged.

So as an adult,  I like the dishes done almost before we leave the table.  If I get up from eating to make a cup of tea, I will take dishes to put in the sink to soak, or food to put away in the fridge.  I might tidy the kitchen or wash the few things in the sink while the water is boiling.

And this housework ethic if you could call it that, absorbs so much of my thinking now because I feel my busyness conflicts with caring for Chris.  I know Chris wants me to sit beside him and watch endless hours of TV.

 Sitting is hard for me.  I like to keep busy.  It’s like my body isn’t happy at rest.

I do housework when I can no longer sit.  I put in laundry before extensive TV viewing so that I have an excuse to get up and move about; change the loads.  Fold the clothes.

I also confess to blogging, journaling, and computer solitaire. Yes, I’m sitting then, too—but sitting and doing.

Chris is resting.  He has switched off the television: Not even a “B” western, he says irritably.  More like a C minus. 

Hopefully, he’s making up some of the sleep he lost last night.  The breakfast of oatmeal and blueberries, toast and fresh orange juice should help put him to sleep.

The sun shines in.  For now, all is well.  Except in my kitchen.

Yours truly,
Margaret Jean.

Precarious Health and Exercise: A Caregiver’s Dilemma

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.