HomeAbout usHomecomingCaregivingRehabLifestyleEmotional MomentsSupport groupsReflectionsTransplantLinks

Caregiving

The role of the caregiver/support person is a critical link in the recovery process. The patient and the caregiver are embarking on a journey without any previous experience to fall back on, and often at very short notice – which is why it is so important for the caregiver to be as prepared as possible even though you are learning on the job.

"I didn’t know what to expect. I’d read some things, some books and information on what might happen, what to expect when we got home. Things like getting a proper toilet seat that would raise him up so as to avoid strain on his chest. And that he might need hand bars to get in and out of the bath and a special seat to shower. But I wasn’t prepared for the anxiety and what he might be going through, what feelings he might be experiencing or what I might be experiencing after the operation. We didn’t get any information on that"

"It’s essential for the caregiver to know how to get the patient out of bed. Before I left the hospital, the nurses showed my daughter, who would be looking after me, how to do it without putting any strain on my incision. She also needed to know about my diet as she would be cooking the meals – which meant being as fat-free as possible."

"The caregiver needs to be aware that the patient might be subject to mood swings; that if I got crabby, which I didn’t, or weepy, which I did, it’s all part of the syndrome and that it didn’t have anything to do with her. She was also told I wasn’t to cross my legs, so she’d harass me about that."

"I was lucky that my caregiver was able to attend some pre-op classes with me, so we were pretty well prepared for coming home. But it many cases, like emergency surgery, there isn’t time for those classes, so it must be a bit like being thrown in the deep-end and learning to swim."

"At the beginning it’s a frightening prospect, realizing what a big responsibility it is. You worry – am I doing enough? Am I doing the right thing? I found it’s important to have a take charge attitude without seeming to be bossy. Things like minimizing visitors and phone calls during the early stages. And I found establishing routines was helpful; making sure the patient doesn’t overdo it and gets plenty of rest."

"A friend of mine, who was trained as a nurses’ aid, told me that, if someone comes to visit my husband, you go out and you do what you have to do. Take a walk, read a book; you don’t need to be there when somebody else is with him. The thing is, I had his needs under control but I really needed to do things for me as a caregiver. I needed to look after me and I wasn’t prepared for that part of it."

"This is the time to start and/or encourage lifestyle changes, especially healthy eating and sensible exercise when appropriate. I found it’s important to create a relaxing, restful and healing atmosphere in the home or, at least in your loved one’s room if your house is usually busy. Being a caregiver is a tough and demanding role which is why caregivers must take time for themselves; take care of their own physical and emotional needs. You are the critical link in the recovery process – looking after the patient’s needs, making medical appointments, administering medications, often having to be available 24/7. So remember to care for the caregiver."

" A lot depends on what the patient feels he or she can do for themselves. I tried to do as much as I could without pushing too much onto my wife. But it was frustrating because for a while she had to do the things that I normally looked after, like taking out the garbage, cutting the grass, carrying the shopping in from the car."

"Everyone knows getting in and out of bed is a problem so my brother, who was caring for me, got a good sized block of wood for me to stand on beside my bed. I found, if I stood up higher, I could sit further back onto the bed, instead of jiggling back. Then I’d cross my arms in front of me, over my huggy, and roll onto my back. But you do need your caregiver close by. Just in case."

"I cannot stress the importance of having an excellent caregiver. In my case it was my husband and, to be honest, I didn’t think he had it in him. He has always been a thoughtful and considerate person, but he helped me emotionally, physically; he helped me in any possible way he could. I’m a very independent person and as I got better I found I was wanting his help less and less – and then realized that, perhaps, I was too independent, so I got to enjoy the way it was. I think it really helped our relationship. But I could not have done it without the support of my husband."

"As a caregiver I think you need to realize that it’s just not a physical recovery but also an emotional one both for the patient and for you. You have to be prepared for almost anything. It isn’t just an in-and-out operation. We didn’t realize the recuperation would take so long. And while he was healing physically, it also led him into down moments and, later, depression and anxiety, and neither of us was prepared for that."

"It’s been four years since he had his operation and as a caregiver I felt drained. I tried to do too much. I tried to do everything that he wasn’t able to do or shouldn’t do, and I seemed to take on too much responsibility. And it just wore me down. What you have to do is look after you. Remember, your patient is being looked after by professionals for his medications, seeing specialists, going to rehab – but no one seems to be looking after you. Only you can do that."

"Something you need to watch out for is that male patients sometimes need to prove they’re physically stronger than they really are – the Oh, I can do that syndrome. Feel they have to prove something. I guess it’s a need to reassure themselves. Don’t - let - them - do - it. "

"If I had to do it over again I would have asked for more help, made the effort to call people and say, Do you think you could do this? Would you be able to come and sit with my husband while I go shopping? People offered but I didn’t take advantage of that. It’s so important to have a time-out."

"The caregiver needs to be prepared for the patient feeling sorry for his or herself, mood swings, anger – and the caregiver mustn’t take it personally; that it’s not about them but it’s about a person trying to deal with the enormity of the surgery or the heart attack; a person most likely not given any preparation on how to handle what has happened."

"There is nobody more important, more critical, to a recovering heart patient than a caregiver and I’ve often thought there have to some people out there who don’t have what I have and that has to make their convalescence much more difficult."

"As a caregiver, it pays to be physically fit because the first few days are short on sleep and you need muscle-strength to lift the patient, helping him in or out of bed, being alert – and remember, you’ve most likely never had any previous experience at this. It’s a 24 hour nursing job for the first few days. We had no time to prepare. He was in the doctor’s office one moment and on the operating table a few hours later. So, if you have some advancing warning, read up as much as you can so that you’ll be as prepared as possible."

"Sometimes you have to be tough, assertive. My husband had that macho thing that he could do everything the same as he always did before the surgery. How do you get through to them? There’s a story of someone who was out playing golf a month after his surgery. I can’t believe that. If it did happen he had to be crazy."

"When I recall all the things my wife did during those first few weeks, I get tears welling up. I mean, she had to do all that as well as deal with the emotional impact, fears and worries, without letting on it was a concern. It wasn’t easy."