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ask: Are you a caregiver? Can you share your experience?

By Diane Porter
 
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A very poignant post about a caregiver whose husband has MS shows the deeply emotional and moral struggle she's having because of the personality changes his disease has caused:

http://www.empowher.com/community/ask/living-and-possibly-leaving-sick-s...

If you have been a caregiver to a spouse with a chronic illness, can you share your experience? How did you negotiate a very difficult road that was layered with both physical and mental challenges?

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Coach Virginia

Diane P, this is such a great question and I have shared my personal experience as a caregiver a couple of times in this wonderful site.

Caring for a love one, in my case a young husband, have not been an easy road, as a matter of fact, it is such a tough road that I refuse to believe the research results of caring for a love one. These results indicate that the toll it takes on caregivers' health is significant. It is estimated that more than 2.5 million family caregivers isolated in homes across America suffer from depression, stress and rapidly declining health, often putting the needs of loved ones before their own. And they often have nowhere to turn for help.

This data is not too promising, isn't it? There have been so many studies released that could scare anyone caring for an ill relative or spouse. Is my health declining? I can see many changes since my husband became wheelchair bound and totally dependent on me to survive. These are the things I no longer do as well:

1. Eat a balanced diet on a schedule
2. No time for the gym or any other type of work out
3. No time for fun things I used to do, like shopping, going to the movies, hicking, etc
4. Take a family vacation
5. Quality time with the kids or time to help them with homework or be there for sports activities, etc.
6. Sleep at a normal time and at least 7 hours.
7. Unable to hold a full time job thus neglecting to contribute to my own retirement and/or Social Security conributions

I have been held hostage to my husband'd disease for three years now. But I have also learned a lot from the experience and from being very active on support forums. I decided that 2009 will be time for me. I cannot cater to the disease 24/7. I have kids to raise and I have made it my goal to detach emotionally from my husband's journey. I am with him at all times but I have hired help to do execute his care plan. I surpervise and manage the day-to-day household matters. But I am trying really hard not to run myself down to exhaustion anymore. I may have been depressed at some point but did not stay there too long. I did not take drugs but I searched for meaning and divine guidence. I got it and I am on my way. My spiritual journey began as a result of suffering, it could have not been a better time!

The physical and emotional challenges caregivers experienced can be devastating, but the experience presents an opportunity to find a greater purpose in the midst of the suffering. As a health/wellness coach I need to remind myself that I must practice what I preach, so taking an in-depth look into the lives of caregivers's suffering has become my purpose in life. I also network with over 300 men and women who are caregivers. This is an important time in my busy life but one that I treasure greatly. It helps me realize that I am not alone on this journey and I may indeed be even among the luckier one.

It is important to recognize whether or not your health is declining. A study by the non-profit National Alliance for Caregiving stated that caregivers often face a "downward spiral of health that worsens as a result of giving care." So, setting aside time for "self-help" is very important. Not always easy, but necessary. I always set time for at least 10-15 of prayer or mediation. Deep breathing exercises keep my blood pleasure normal and regardless of time, I always eat healthy and drink plenty of fluids. I am still working on getting enough sleep. It is hard as my husband needs around the clock surpervision and at night time he is on a ventilator so the alarms wake me up all the time.

The American Medical Association has published several interesting articles about the health risks of caregivers. Here is one http://www.ama-assn.org/ama/pub/category/8802.html

The AMA's Caregiver self-assessment tool is also pretty handy to evaluate where you are as a caregiver in terms of potential emotional of physical health risks:
http://www.ama-assn.org/ama/pub/category/5037.html

January 8, 2009 - 11:16pm
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