How I Care: 'Caregiving is demanding, but it can also be rewarding, even while your heart is breaking'

Lynn Daigneault cared for her husband who lived with lung cancer until he chose medical assistance in dying. Her advice to other caregivers? Speak up, ask for help and be kind.

Maja Begovic 13 minute read April 27, 2022
Dwight and Lynn Daigneault

"Knowing that my husband was dying, my heart broke in pieces, and I felt like I was dying a little myself every day," says Lynn Daigneault, who was a caregiver to her husband Dwight. SUPPLIED

This is the first interview in Healthing’s new series, How I Care, which takes a look at the lives of caregivers — the challenges, the heartbreaks, the joys and the lessons learned. This is Lynn Daigneault’s story.

 

“I can’t breathe.”

On May 1, 2020, at 4:30 in the morning, those words made Lynn Daigneault reach for the phone and dial 911. It was just two months into the pandemic, and she feared that Dwight — her husband of 40 years — had contracted a dangerous new virus that had brought the world to a standstill.

Within minutes, an ambulance arrived to transport him to a local hospital, and over the next 48 hours, doctors ran multiple tests to pinpoint the exact cause of his breathing difficulties. Dwight tested negative for COVID-19 — a result which Lynn says brought them both a sense of relief, but his symptoms persisted, and he underwent additional testing. Two days after he first arrived at the hospital, Lynn learned that her husband who was already battling lung cancer had pleural effusion or fluid buildup in the lungs, and subsequent tests revealed that the lung cancer had metastasized to his brain.

Every year, more than 29,000 Canadians are diagnosed with lung cancer, according to the Canadian Cancer Society, and the majority of cases can be attributed to known risk factors such as tobacco use, family history, second-hand smoke, pollution and exposure to radon and asbestos — but many people also develop the disease without ever being exposed to any of these things. Lung cancer can also spread to other parts of the body, usually to the liver, bone, kidneys, or the brain.

When Dwight was diagnosed with non-small cell carcinoma, he was 82, healthy, physically active, and not on any medication. The diagnosis came out of the blue — he never smoked a day in his life, and he was the kind of man who could inspire people half his age to prioritize fitness and their health. When Healthing first interviewed him in November 2020, he expressed how grateful he was for the love and support of his wife Lynn who took on the role of his caregiver. On May 25, 2021, Dwight chose medical assistance in dying and passed away peacefully at his home.

His wife Lynn sat down with Healthing and shared intimate details of the highs and lows of her caregiving journey, her biggest regret, and why a conversation with her husband’s oncologist left her sobbing and speechless.

This interview has been edited for length and clarity.

 

As a caregiver to your husband, what responsibilities did you take on?

I had to make sure Dwight took his medication at appointed times so that they didn’t interfere with different foods or different medications. I set up alerts on my phone so I would get reminders about care protocols, I kept in touch with his doctors, and I accompanied him to and from appointments. Eventually, I had to buy a car to make it easier to make all those trips and because I was barred from the hospital due to COVID, I had to rush home so that I could get on the phone and listen in on hospital appointments and participate. Most of the time, it was difficult to hear what the doctor was saying.

I also provided updates to family and friends, and I bought and prepared foods that appealed to Dwight because his appetite kept changing. I also kept in touch with the local integrated health network around nursing care and ordering of assistive devices and aids, such as a bar for the tub and beside the toilet, and later, a cane and a walker. I had to make sure he didn’t fall down the stairs at the time when he could still use the stairs. At night, I would lie down with him and hold his hand until he fell asleep, and I’d wake up several times to check on him. Many times, I called the cancer hotline in the middle of the night if he had an issue that we didn’t know how to deal with. Throughout the pandemic, I also worried that if I got sick with COVID, who would look after him and who would look after me.

What is the hardest part of caring for someone?

It’s physically and emotionally draining because you’re watching someone who is so strong fade away slowly. When the cancer metastasized to his brain, knowing that my husband was dying, my heart broke in pieces, and I felt like I was dying a little myself every day. You’re crying, but you try not to, you have to face death and try to come to grips with loss. You’re on adrenalin and in survival mode so you get up and do all the tasks you have to do, but emotionally, it’s very hard. It’s a lonely, isolating journey, even if you have loving people in your life.

Did you have emotional support for yourself?

I was so busy all the time, it never occurred to me to get support for myself, but I did speak to a grief counsellor about a month after my husband’s passing. That service is provided by the local integrated health network, which I didn’t know even existed. Many caregivers can’t leave the house, but virtual support groups are available through a local integrated health network.

Caregiving is hard, how do you stay optimistic?

Sometimes, you don’t. When you look forward into the future, you’re not seeing happiness, and you’re not seeing joy. Instead, you look ahead and you’re seeing someone you love dying. When you have nothing to look forward to but sorrow, it can be very debilitating.

But, as a former personal trainer, I know that fitness is important to my physical and mental health, so I trained on Zoom with my trainer — who is also a friend — twice a week, and I took virtual Qigong classes a couple of times a week as well. I walked whenever I could, listened to music, and I cried a lot on the shoulders of friends and family who were available to me and who allowed me to get rid of stress that way. If caregiving would have led to my husband being alive, it would have been easy to stay positive, but there was nothing to be optimistic about because when he is gone, then what?

Was there something that helped you stay balanced?

Every time I would feel down, my doorbell would ring, and I would find flowers on my doorstep or a card, chocolate, or groceries from a neighbour. Or someone would text and ask if there’s something they can do to help. And certain things that came out of the blue from people I least expected it from made my heart soar.

Did you allow yourself to get emotional in front of Dwight?

After he would fall asleep at night, I would go downstairs and cry, and then I realized that he could hear me, so if the weather wasn’t bad, I’d go outside and cry. If one of my neighbours saw me, they would come over and sit with me. I cried a lot with Dwight. In a way, it was one my regrets, but every day, I saw him fading more and I knew that I was losing him. To have put up a cheerleading front would have been so unreal. It would have denied him the opportunity to be honest and emotional, and it would have robbed us of the opportunity to be together in an authentic way.

If you could do it all over again, would you change anything?

Dwight was very accepting of his illness, that was his personality, that’s how he was. But because he was so pragmatic, I didn’t realize at certain times how sick he was feeling because he was so stoic. There were times when I was short-tempered because I was so exhausted. I wish that I had slowed down to clue into what he was experiencing more, but when you’re totally exhausted from caregiving and the lack of sleep, it’s hard to think at that time.

The one thing I wish I could change are the emergency departments in our hospitals. They have outdated procedures, the discharge instructions are totally illegible — they’re written on multiple pages, and each page goes in a different file that by the time the patient receives their pink page, the instructions are completely illegible. Those forms were used 40 years ago, and they’re still being used today.

Emergency departments also communicate with other departments by fax and a fax requisition for a major procedure that my husband needed, which was to put in a drainage tube, was never received. I had to call and involve an oncologist at the Princess Margaret Cancer Centre that my husband had not even seen yet, and luckily, he turned out to be one of the most wonderful doctors who was able to push this along — he stayed in contact in with me throughout the weekend and arranged for a senior surgeon to take Dwight in for surgery on Monday morning.

Did Dwight often require emergency care?

I had to take Dwight twice to the emergency department for a kidney stone, and they sent him home with a referral that fell through the cracks. He was in terrible pain, so on a Saturday morning, I called Medcan, a private health delivery service, signed him up for year-round care, and put it on my credit card. Within 10 minutes, we had a virtual appointment with a doctor that evening who referred him to a urologist on Monday morning, and by the end of that week, he had the kidney stone removed. Hospitals themselves provide great treatment, but emergency departments do not.

If I hadn’t been able to afford private care, I don’t know how many weeks or months he would have been in pain. I filed a complaint with the hospital ombudsman who followed up with the head of the emergency department who basically said, “I know this is happening,” but no steps were outlined in terms of what they were going to do about it and how they were going to correct it. As a caregiver, you have to be prepared to wage major battles, and you have to be prepared to be a warrior.

What’s helpful to say to someone who is a caregiver?

The best things to say are something like ‘I would like to bring a meal over, what day is good for you?’ or ‘What day do you need me to come over, so that you can get out for a couple of hours?’ Be specific and ask if they would like a ride to an appointment or if you can bring groceries. To a caregiver, you could also say, ‘Be strong,” ‘I love you’, and ‘I’m here for you.’

What should people never say to a caregiver who lost their loved one?

One person reminded me that my husband was 84 and alluded that he wasn’t going to live much longer anyway. After he passed away, another offered their condolences and said, “You’re going to really enjoy being single.” Neither person meant to be hurtful, but the comments sliced through me and left me in shreds — it was so disjointed from the grief I was feeling. My advice is that if you don’t know what to say to someone, say nothing. Or give them a card, a hug, offer your condolences and say something nice about the person who is gone because their loved one wants to hear it.

What advice would you give to someone who is just starting out on their caregiving journey?

People may not realize that caregivers can get ill because their body is breaking down from the constant stress, and so my advice for someone who is starting out is to take care of themselves, physically and emotionally. It’s also helpful to keep a written care log in a file, so that every bit of information is stored in one place. I would encourage people to also keep a journal about how they’re feeling, and to not be afraid to make noise and speak up in a health-care setting if they’re not getting the information they need or if the person they’re caring for is not getting the support they need. It’s important to remember to do so with respect because those people are also under a great deal of stress.

This might be surprising to some, but if you can do random acts of kindness for other people, it will make you feel better. Caregiving is an emotionally charged time and you might be afraid, but that experience brings people closer together. Often, the person who is very sick becomes their best self, and they want others to share how they’ve impacted their lives.

What kind of support is available to caregivers?

The local integrated health network is excellent, and you can find out what they can do for you. They will send a physical therapist, a social worker, a nurse, a personal support worker and anyone you need to help you. Uber Assist is another option that’s available to caregivers and patients — they have specially trained drivers who can assist people in and out of the car. Caregivers can also ask their primary doctor if they can connect them with someone who has been through a similar experience. I never thought of connecting with a peer support group, but it’s out there if you need it.

Any advice for caregivers who want to do it all on their own?

Lose your pride, ask for help. If you have people you can rely on, don’t be shy, don’t be proud and tell them what you need. Don’t wait for them to ask because some people are too hesitant and don’t want to interfere in your life. Accept all the help that’s offered — don’t say no.

Looking back on your experience, what are you most grateful for?

I am very grateful for medical assistance in dying (MAID) because we knew the day my husband would die and that was very hard, but it gave his son, his grandchildren, and his friends a chance to spend an hour with him and talk. I am also grateful to my family and friends — they are everything to me — and for the acts of kindness that came my way. I am so grateful that I had a chance to be together with my husband 24/7 in his last year and that he died a peaceful death at home with his family. I’m grateful to the government for providing medical assistance in dying, so that my husband didn’t have to suffer the ravages of brain cancer.

I am also very grateful to Dr. Geoffrey Liu, oncologist at Princess Margaret Cancer Centre for his compassion and kindness. When my husband made the decision to move forward with medical assistance in dying, his oncologist asked me if I was accepting of his decision and if not, he offered to find me support. I will never forget one of the last conversations with Dr. Liu — he was on the speaker phone and he said to my husband, “As your oncologist, my job was to keep you alive and as healthy as possible, but now that you’re no longer on treatment, I have to pivot as your physician, support you in your decision, and wish you well as you face your final moments.” I sobbed. I was speechless that an oncologist could be so compassionate and so supportive of his patient in living and in dying.

Caregiving is a journey that is physically and emotionally demanding, but it can also be rewarding, even while your heart is breaking.

 

Maja Begovic is a Toronto-based writer.

Do you have a story about your experience as a caregiver? Send a note to info@healthing.ca and we’ll be in touch.

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