It often happens that both parties in a relationship can be ill at the same time, have the same diagnosis (they met at a support group) or the caregiver becomes very sick after taking care of a loved one for an extended period of time. I’ve also seen situations where a parent is living with a serious illness and an adult child is diagnosed with something just as critical or even worse. So how does one cope when more than one of you need a caregiver?
A very common reaction is, “whose going to take care of me?” People come to depend on their caregiver, so if they become ill, it’s extremely frightening. It’s not surprising that when we feel sick we become self-absorbed. It can be very hard to step outside of our selves and recognize that other people have needs as well. Left unchecked, it can quickly become a contest of “I have it the worst.”
It is also not about ignoring your own needs because you think your spouse/partner is sicker. This attitude can be lethal. A caregiver, who helped organize a support group for other caregivers, told me that nearly all of the spouses that were part of the original group had either died or had been diagnosed with major illness. Interestingly, nearly all of the people they were caring for were still alive.
Recognize that you both have very important needs and they can’t be ignored. Patience and taking the time to develop some new skill sets can go a long way. Step one is open and honest communication. Problem solving is key.
• Each person needs to describe their view of the situation. This is the time to discuss fears, concerns, and underlying issues.
• Actively listen to what the other person is telling you. Understand what their concerns are and repeat them to make sure you are hearing them correctly.
• Try to develop a strategy that meets both of your needs
The latter can be very hard and may seem impossible. Using a third person can be very helpful and reduce stress in the process. A social worker, care manager, counselor or even medical provider can be very helpful.
Many of the recommendations and resources identified in the previous posts on caregiving are just as applicable to this situation: Part I Taking Care of you And More Resources and Recommendations
There may be as many ways to deal with this situation as there are couples in it. I met a couple, where one spouse had Parkinson’s Disease and the other diabetes. They found that attending each other’s support groups helped them understand the other person’s condition and it expanded support opportunities from participants in both groups. Their motto was, “we take turns.”
While working in AIDS, I came across this situation a lot. Fortunately, AIDS service organizations (ASOs) became adapt at helping by providing chore services, buddies to help with shopping, keeping appointments, and a myriad of other services. Check with your provider, the social worker at the hospital and the condition specific organizations (e.g. American Cancer Society) relevant to the two of you and see what resources might be available.
Some things to consider, that you may not have thought about:
• If you are each other’s power of health attorney, the person who can make medical decisions for you in the event you are unable to do so, consider giving this responsibility to someone else.
• Complete advance directive forms and register them. Go to www.caringinfo.org/stateaddownload to learn more about this.
• Get help as soon as possible. Make things as easy as you can. As if it wasn’t enough taking care of a husband with Parkinson’s Disease, one woman had her adult daughter return home with a major life threatening cancer. Overwhelmed, the first thing this woman did was to register for Meals on Wheels. Her thought was not having to figure out meals would make life easier. As it turned out, her daughter did very well and has stayed to help with Dad. They continued the Meals on Wheels.
• Enroll in a “Living Well” or “Healthy Living Workshop.” These workshops and seminars go by different names, but the goal is the same- to teach techniques that help you manage your disease, as well as give you a new sense of well being. Many of these programs are connected with Stanford School of Medicine’s Chronic Disease Self-Management Program. Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, and, 6) how to evaluate new treatments.
I’ve been part of my state’s program and have seen how much it helps people. You can learn more about such programs by asking your local hospital, medical provider and checking your local newspaper. These programs are now available worldwide and some are even available on-line.
• Use the “Getting What You Need Checklist.” It highlights many of the things you might need as well as where to call or e-mail to obtain them.
• Keep a Personal Health Notebook and make sure it’s up to date. At a minimum this should include:
- Diagnosis
- Medications you are currently taking, including dosages, as well as medications you have taken and those you are allergic to.
- Contact information for health providers, name and number of the pharmacy you normally use, hospital contact information, and who to call in the event of emergency.
• Be gentle with each other.
• Do the best you can and remember that your best is more than good enough.
SOME MORE RESOURCES AND INTERESTING READING
For Mother’s Day, Send Your Mom a Dozen Roses, your Caregiver Sister Two Dozen!
Caregiver Survival Questionnaire
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