I'm losing myself, being a caregiver.

863needshelp asked...

I know I am paying a heavy price, physically, for 24/7 caregiving, but I am truly beginning to worry about my mental state. After I've repeated the same thing every 10 minutes day in and day out, I feel like my brain is certainly not being stimulated at all. I do read but not to truly comprehend - just as an outlet. It's been suggested that I join some caregiver groups but, honestly, when/if I get a few hours to myself, the last thing I want to do is go to a meeting about it! (Mom has Alzheimer's). I feel so trapped in my body, mind and spirit by this caregiving and I know that I can face at least 5 - 10 years more of it. How do other people handle the feeling that you are losing themselves mentally in this caregiving ritual?

Expert Answer

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

I sympathize and empathize with you as a caregiver for an Alzheimer's love one. You're correct, it does extract a heavy price. Your question about how to handle the 24/7 demands of caregiving and the prospect of many more years to come is excellent and one that is frequently asked.

The answer is you can't survive being the sole caregiver on a continuous basis with 24/7 demands. Unfortunately, statistics bear out that statement with caregivers in over 60% of cases becoming ill from the incessant demands made upon them. In about 40% of those cases, the person providing the care predeceased the patient for whom they were caring. That's not a good outcome.

While I respect and applaud your commitment to caring for your mom, especially with her Alzheimer's issues, you must understand that your obligation regarding your physical, emotional, and spiritual health is to yourself, and if apropos, to your spouse and other members of your family living under your roof.

If your mother were able to clearly communicate her wishes and feelings about your dedication to her, I'm fairly certain that she would say to you that while what you're doing for her is commendable and appreciated, you deserve to have and enjoy a life. And that's the answer to your question.

Allow me to make a few suggestions that will not only enhance your life and mental state, but may enrich your mother's life as well. You need personal time, every week, perhaps a few hours once or twice a week, plus a "day off" to do whatever it is you wish to do "“ meet friends, attend church, go to a movie or have your hair done. Down time is necessary for you to be able to cope with the pressure of being a full time care provider.

To do this, if you have sufficient funds, you can contact a home health care agency and arrange to have someone come in for their required minimum number of hours to relieve you and care for your mom. Of course, no one does that as well as you do, but you and your mom will benefit from the change. If you're finding that your mother's demands are denying you sleep and require nighttime duties, you must get help, because your health is in jeopardy if you continue to push yourself without sleep. Home health companies can help.

Contact the Alzheimer's Association in your area and talk with one of their social workers about your concerns. Be open and honest about your situation and ask them what resources are available to you. The Council on Aging may also be a resource for you to check.

In many communities there are adult daycare facilities that work with and care for Alzheimer's patients for several hours during the week. If you can find such a facility and you can drive your mother to their location, you'll find that they care for patients just like you mom. They often provide meals, dispense medicines and most importantly, they provide socialization to your mother while allowing you a much needed break away from her. There may even be financial assistance available to subsidize the cost to have your mother spend several hours there one or two days a week.

Another source of relief for you may be your immediate family in the area. Sisters or brothers, even older, responsible grandchildren can fill in for you during the day to visit and care for your mother while you take time to take care of yourself, even if it's just for 2-3 hours. It's important for you to do it.

Rather than worry about the next 5-10 years and the increasing demands that caring for your mother will make upon you, take the time now to find out how to create a support system and regularly scheduled time away from mom.

I strongly recommend that you take one of your upcoming "days off" and attend an Alzheimer's support group meeting. The people who will be there are just like you, and they may have already found the necessary answers to the exact problems you currently face. They will gladly give you the information that may not only make you a better caregiver, but will definitely save your sanity and could save your life.