I have lost so much. Not only the love of my life, but a way of life. I confess to difficulties. Challenges. Sobbing through movies is the least of my problems. I am lost. Mentally wandering in a wilderness of change.
I make decisions. Immediately regret them. Rethink them. Why am I the last person on my list of priorities?
I must give myself time. Pamper myself a bit. So I work and then rest. Put my feet up. Take my salad and cheese in my room on a tray, like my Grandmother used to do. Eating on the bed where Chris and I had so many meals. I can’t wait til I can eat at the table again, I used to think. I was wrong. I want to eat where we ate.
I go onto Facebook and find out that two people in my old business network group have become bestsellers on Amazon. And I was the writer! MY royalties trickle in. I congratulate them. There is no animosity toward them, only admiration for their success.
Would I like to be a best seller on Amazon? Absolutely. But I do not regret devoting my time to Chris. That has given me peace. The anguish I feel at being surpassed is not relevant. To really work at writing—that I can do any time in the present or future. To be Chris’ caregiver? Was a limited engagement. Immediate. Imperative.
I walk. Even with an inflamed Achilles tendon, I have decided to park the car for the summer. Not to insure it. To make myself walk or use transit instead of driving. To save money. To think twice before zipping off somewhere.
The financial curve is huge. Living without his pensions. I am not complaining; but I am concerned. I need my own space. My apartment is a refuge.
And I know this about myself: I cannot share with a friend, as my daughter does. And I will not live with another family member—a daughter or a sister or a cousin. I cannot be the ‘poor relation’ living off the charity of another, however kind and generous they may be.
Besides, I like solitude. I love my home. Memories of life with Chris echo in every facet of every room. So maintaining my home will always be a financial priority.
Slowly with each decision, my life changes as I modify budgets, change how I do things. I’m shaping a life on my own.
It isn’t easy. I’ve been married since I was seventeen. Now I must make it on my own, know that I have the discipline, courage and commitment to manage my life and manage it well.
My life with Chris gave me the tools and resources I need. I just have to use them in the best possible way. Ah, Chris! Miss you, Babe.
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.
To read the source articles go to:
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.
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.
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:
As his wife and now his caregiver I’ve always noted that Chris gets pleasure from simple things. One of these is old movies.
One of his favourites is Keys to the Kingdom, starring Gregory Peck. When Peck, a priest, gets to his mission in China, he finds that he has no parish members. He is told the people will only come if he gives them rice. Peck stoutly replies that he doesn’t want any ‘rice-Christians’ in his mission.
These days another pleasure for Chris is the bird feeder. We chose a little cedar model. Then came the choice of birdseed. It seemed expensive, but it was no mess and recommended, so we bought it.
I rigged the birdhouse up, put out the seed and waited.
The next day a single bird, brown and grey with some white markings, came and sat in the Japanese Maple next to the birdhouse. After a thorough visual examination, he finally landed and began to peck at the seed.
He left not long after, much to Chris’ disappointment. But later that day, Chris ventured out to the living room to have coffee. Marg, Marg! Come and see! he called.
Our ’Scout’ as we had dubbed him, had come back, bringing another with him. Together they dined.
The next day they returned, and this time another bird with orange markings trailed along. There was some fluffing of feathers and a bit of pushing and shoving at the trough, but Scout held his ground.
In the end, they all ate to their contentment, more birds joining in, some taking sunflower seeds or peanut halves back into the branches of the maple tree to break down and eat.
Chris watched all this with interest. It’s their hangout, he said proudly.
If I had wondered why Chris wanted a bird feeder, now I knew. All his life, Chris has helped people: giving them jobs, helping them with housing, even going to the Sisters of Atonement and making sandwiches for the homeless.
Now that he’s infirm, none of that is possible. But these small creatures, Scout and his friends, depend on him. That allows him to feel generous. It lifts his spirits.
In May we were gone for two weeks. We came back to an empty, abandoned bird feeder. We put feed out right away, early in the morning, but in spite of repeated checking, we saw no birds all day. Chris came to the dinner table disappointed.
Rice Christians, Chris said, as he unfolded his napkin. That’s what the little beggars are. Rice Christians.