Caring for the Caregivers

This section provides some tips on how to take care of yourself during the stressful time of being a caregiver.

Caring for a family member or friend receiving palliative care is demanding, even though you probably would not have it any other way. Anticipating and planning for one’s limits prevents it from being destructive.  Whether you are caring for someone full-time or just occasionally helping out, you need to guard against becoming mentally and physically exhausted. Taking time for yourself is often easier said than done, but remember that pushing yourself to do more, with less rest, may put you at risk of becoming sick. Ultimately, you might become unable to care for the person with illness and you may in turn cause additional stress for the person who is ill.

 Take a Break

This is absolutely essential. The key is to identify the caregivers and palliative care team members who can provide help and to schedule it regularly. It is also critical to understand that a palliative care patient’s needs can increase unexpectedly and that when they do, you must ask for help. You cannot, and need not, do this by yourself.

Many hands make lighter work. As the primary caregiver, you have to look at yourself as a combination of foreperson and ringmaster, and one of your most important jobs is to schedule a rotation of caregivers so that the load on any one of them is manageable.

For a particularly graphic account of the toll on a caregiver, you can go to the segment of Noreen McInnes's video.

One of the best ways to ensure that you do not run low on energy in your role as a caregiver is to take regular breaks and do something that you enjoy. At least once a week, you need to take time for yourself, whether that means going to a movie, taking a walk, or going for a bike ride.

Take sensible advantage of the assistance that friends and other family members may want to provide. While they may sincerely wish to help you out, they may not know how to go about doing so. Provide friends and family with specific suggestions as to how they can be helpful. For example, you might want to ask them to take you out to a restaurant or go for a walk with you, so that you have time to talk away from the care environment. Maybe a friend could pick up some groceries for you, mow the lawn, or take the dog for a walk, or conversely, allow you to do these things, while they watch the patient.

Your hospice or palliative care program may be able to ask a respite worker to come into your home to give you a break. If available, a hospice or palliative care ward bed can be used for respite for a few days if it is jointly determined with your health care team to be of value to the patient and yourself.
 

Juggling Care Giving with Work

Whether you are caring for someone in the home or providing occasional care in hospital or hospice, you will likely be juggling numerous obligations such as caring for children or aging parents, and looking after other matters related to home life.

People deal differently with these competing demands. Some people find that going to work gives them a break from their caregiver role and helps them re-energize, so that they can better focus on the person who is ill when they get home. Others may find that the demands of work outside the home combined with care giving responsibilities are too much to manage. Still others may feel stressed because they cannot afford to leave work in order to care for someone. If you are considering taking time off work to care for someone, you should know about Canadian government benefits (link) that are available to you as a caregiver.
 

Look after Yourself

Caregivers often say they put their lives “on hold” while they look after someone. If you are caring for someone, try to stick to a schedule that ensures that you eat and sleep regularly. If you are always pushing back your bed time and eating meals hours after you first became hungry, your health will suffer.

Keeping simple snacks on hand might be one way to ensure that you are always able to eat regularly.

If you are feeling tired, you might want to plan to sleep whenever the patient is sleeping, even if that means leaving some chores unfinished.

Draw upon whatever resources are available to you to help you with household tasks so that you do not become exhausted.

If you need to visit a doctor or clinic for a health concern, try not to put off the visit until you have 'more time', you may never find it!  Ask for a family member or friend to help.

Keep Your Back Healthy

If in your role as a care provider you are required to help lift, transfer, or reposition an ill person, you will want to keep your back healthy and strong to decrease the likelihood of a back injury.

Exercise such as walking or swimming, and abdominal exercises, can increase strength in your lower back and help your muscles function better.

When you are lifting someone, try to let your legs do the work, keeping your back straight, tummy tucked in, and bending only at the knees. Keep the person you are helping to move as tight to your body as possible and avoid lifting and twisting at the same time.

If you are sitting for long periods at a time, make sure the chair has good lower back support or create one with a pillow or rolled towel in the small of your back. Your knees and hips should be level to the floor.

If you need to stand for long periods of time, alternate one foot on a low footstool to take some of the pressure off your back.

If the patient is not able to lift much of their weight at all, you may want to do the major moves – such as helping the person move from the bathroom to the bed – when someone else is there to help. It is much easier for two people to help someone move around than it is for one person.

If the patient should fall down, your first instinct may be to help the person get up again. If you are not very strong, it may be safer for the patient to remain on the floor until you can get help from someone else, as lifting someone up off the floor can be very difficult. You can put a pillow under the patient’s head and help them into a comfortable position until help arrives.
 

Questions of Safety

If the person with illness has become confused, they may become argumentative or in rare cases, even combative. You should get help if you feel that your physical safety of that of the person is threatened. They will require reassessment, and may need a change in medication or further changes in their care.