Give Caregivers a Break
As President of the Well Spouse Association, a group offering peer support to spousal caregivers, I wish to comment on the findings Dr. Cynthia Gries made about Post-Traumatic Stress Disorder (PTSD) affecting caregivers ["Depression, PTSD Common Among Lung Transplant Patient Caregivers," usnews.com].
Dr. Gries's study looked at caregivers of lung-transplant patients. It was not stated, but many of these would be spousal caregivers. I would add that, in our experience, PTSD affects long-term caregivers of people with many conditions. For example, WSA members are looking after spouses with MS, traumatic brain injuries, Parkinson's, cancer, spinal cord injuries and many other conditions and disabilities. Many spouses do the caregiving for years on end. They feel like they are in a war against illness—and yes, depression and PTSD are common. One of the most important things that could be done right now, is for Congress to authorize 2008-2009 funding for the Lifespan Respite Care Act. Passed in Dec. 2006, this act has not yet been funded. Money would go to all states, to implement or improve on respite care facilities, that would allow caregivers to afford to take regular breaks, while being assured that their loved one was being given good care in the home or in a temporary institutional placement.
Richard Anderson
President
Well Spouse Association
Freehold, N.J.
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Respite for caregivers
Ten years ago I had to leave my nursing job to care for my husband who is a 100% diabled vet. WIthout this move he would have had to be placed in a nursing home.
I am still on duty 24/7. He has outlived all prognosis many times over. Meanwhile I am now 61 and wearing out very fast. I have not had a day off in 10 years.
I am a member of the WSA and it is truly been a godsend to me. The support has been wonderful and it has made the last 2 years bearable.
With the implementation of the Lifespan Respite Care Act the tens of thousands of family caregivers could get a very much needed break. It was nearly impossible for me to take the time to have a much needed surgery 5 years ago.
We need a break. Please keep in mind of billions of dollars we have saved the taxpayer in keeping our loved ones home.
Give Caregivers a Break (Please)
As caregiver to a spouse who is a quad due to MS, I am also a member of the Well Spouse Association (www.wellspouse.org). I cannot say enough good things about Well Spouse! It is my lifeline ... my only lifeline. While I find peace and comfort for the future from God and my Church, only Well Spouse provides the unique emotional help and understanding so desperately needed here and now by partners of the chronically ill and disabled!
My husband is still able to drive himself to a full time office job in a van adapted to drive with hand controls from his power wheelchair. In addition to normal home maintenance and raising our family of four, we have had to make many expensive modifications to our home and our life for him to maintain employment while living at home.
We planned and saved carefully. We were not ruthless or extravagant with our money. We took only a few modest family vacations. Twenty-two years of this has been very expensive. The proverbial rainy day came much too soon. Our retirement savings have been wiped out and there is nothing left for help in our home to assist with showers, dressing, etc.
Our children have put themselves through college and moved away. I don’t know how long I will be able to continue doing this alone, as it is already extremely difficult due to my arthritis. But there is no escape. It’s no wonder so many of us “Well Spouses” suffer from depression and PTSD. Please support Congress in authorizing 2008-2009 funding for the Lifespan Respite Care Act that mentioned previously. Caregivers really do need a break to continue providing care that keeps the disabled integrated in society and out of government funded institutions!
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