Jacob Teitelbaum, MD
In our worry about very ill patients we often forget to care for those who look after them. Caregiver spouses are at risk of becoming sick themselves unless they take special effort to stay healthy and happy.
In our worry about very ill patients we often forget to care for those who look after them. Caregiver spouses are at risk of becoming sick themselves unless they take special effort to stay healthy and happy. Only then can they lovingly care for someone who is seriously ill.
As a caregiver spouse it's important to take care of yourself so you don't suffer mental and physical exhaustion. If you burn out, who will take care of the sick person? Here are some ways to find time for yourself so you feel better about the whole process of caregiving. I also offer a few ideas about how to make your patient more comfortable.
Sane not Saintly
We sometimes think it's better to sacrifice and constantly give of ourselves even when it feels uncomfortable to do so. In fact we often feel guilty if we don't do the things we don't feel right doing. It's time to let go of this way of thinking. Our actions need to take into account our own needs as well as those of the ill person. Doing things we don't feel right doing can lead to burnout and illness. Getting sick yourself will not make someone else healthy but only add to their burden.
Instead, listen to your feelings. If something feels good, then by all means do it. If not, don't! Ask for help. Perhaps someone else can lift your patient or bathe them things you can't or don't want to do.
Keep Up With Your Own Life
You need to keep doing the things you enjoy so you don't become resentful of the demands the ill person places on your time. Get outside help for several hours each week so you can get out of the house and have some fun. Depending on how sick the person is, they may be able to come out with you for part of the activity. For example, they may be able to sit by the lake while you jog around it. Find creative ways to maintain the activities that give you joy in your life.
If you weren't in the picture, somebody would be taking care of the patient. Who would that be? Get them involved now.
Manage Your Patient's Pain
Keeping the patient pain-free is good. It is also their right. Many pain symptoms do not respond well to conventional painkillers and narcotics. Increasing the dose often doesn't help but instead may cause side effects. An extraordinary array of alternative pain treatment is available, from herbal remedies to massage to meditation. Investigate these alternatives to find options that allow your chronic care patient to remain pain-free.
Talk with your patient and reassure them that you will keep them comfortable. This discussion may eliminate an incredible amount of fear they may not be sharing with you. Keeping your patient comfortable will make the caregiving relationship less stressful for you. Communicating honestly and openly, and keeping the sick person pain-free and at ease, does wonders to simplify the work of the caregiver. It can actually help make the situation a rich, deeply connecting experience for both people.
Talk the Hard Talk
Other topics for open discussion can increase your level of comfort as a caregiver. Deal openly with questions relating to terminal illness, end-of-life care, and the dying process.
Be honest with each other about the implications of the illness, including death. One of the most devastating parts of chronic or terminal illness is the isolation that can occur because family and friends fear death and dying. This creates a "conspiracy of silence" around the patient that can be very uncomfortable. It also makes it impossible for them to speak about feelings that are important to them.
You may want to bring up the issue of death by discussing your own personal beliefs about the afterlife and your preferences about how end-of-life care should be for you. If the person is not ready to talk about death, they will let you know and you can set the question aside for a while before bringing it up again.
More often than not, when you begin to talk about dying, your chronic care patient will experience an incredible sense of relief and will bring forth an outpouring of feelings that they have wanted to share for some time.
Decide on End-of-life Care
It is also critical to talk about palliative care. Doctors have sometimes been taught that death is the enemy and make extraordinary efforts to make sure the patient does not die on their watch. Aggressive measures are helpful when they are used to prolong life. When they are used to prolong death, however, I believe it to be unnecessary torture.
Ask the patient if they want to be resuscitated when their body is ready to pass on and nothing more can be done to benefit them. Would they like to sign a living will? If their illness becomes clearly terminal, would they like comfort measures only? This means that everything will be done to keep the patient comfortable (including pain relief) but no medication will be given (for example, antibiotics and, if the patient wants, even IV fluids will be stopped). Coma, and the dehydration that comes with it, has for millennia allowed the body a graceful and comfortable way to make its exit.
The Dying Process
Dying does not have to be a terrible thing. Indeed it can be a sweet time that helps to deepen your relationship and allow you to play a special part in someone's life. When the dying person is comfortable and has around them the people they love they are more likely to die in peace. For most people, having loved ones with them is much more important than the questionable benefits of high-tech medicine in their final hours.
When your loved one dies, allow yourself the credit you deserve for having cared for them at a most difficult time. Gently let go of any guilt you may feel about not having done enough.
The best advice I can give you throughout this whole process is to frequently check in with what feels good to you. Good feelings are the soul's guide to actions that are true to yourself. Keep your attention on what feels good (you'll be amazed at what feels good in this setting). In this way, your experience of being a caregiver will be a blessing, bringing you and your loved one into a closer, happier, and more loving place.