what's your story?

Everyone has a story. As a caregiver, your experience may benefit another in a similar situation. Would you share it? Submissions of 300 words or less may be sent to Lynette Loftus, lynette_loftus@bshsi.org.

"I've learned a great deal about being a caregiver in the past year. Here's something I wasn't aware of until faced with the situation: If you are acting as an advocate for someone who doesn't seem to meet the criteria for assisted living, the alternative isn't necessarily a skilled care facility.  Assisted living may be a realistic option if you are willing and able to also provide private care for periods of time throughout the day, and or, night.  The assisted living facility will generally reduce their charges because they aren't providing staff to take care of all needs, and the private care givers can give undivided attention. You may find the expense to be less, and the lifestyle better from many perspectives.  - Kathy

“I have been a care-giver for both my mother & mother-in-law.  With my mother I learned about this role by the seat of my pants, so to speak. I had never been in this role and found it quite daunting.  I now realize that I needed help but other than the case worker  in the hospital I did not know where to turn.  I feel that the most difficult part was in choosing a nursing home for her when she needed it.  I might mention that I was an only child with no other family around to help. My husband and my mother never got along, but he was there to help me through this difficult time.  When his mother needed help it was a little easier as he was involved.  My mother-in-law was able, with our help to stay in her own apartment until 6 months before her death.  The second time around for me was easier as I had found where to get the help we needed to be effective care-givers.”   -  Janet, IS Telecommunications

“Being the youngest of seven children, there’s a significant age difference between the oldest and youngest. I didn’t have to deal with health issues for either of my parents before they died, but being a nurse I became my oldest brother’s medical POA after his first stroke. I was involved in the decisions regarding his discharge and transfer to a rehabilitation center. After a setback and readmission I was present when he was admitted to another rehabilitation facility and discussed the criteria he needed to meet before he was discharge. He did well for a short time on his own, but once again I was called to make crucial decisions when he was brought to an ED in a coma after a massive stroke. The decision to make him a DNR to the final decision to allow him to be a tissue donor ended my responsibility as POA. I know he trusted me with his life and that was a responsibility I never expected to have to carry out. I’m grateful that we had talked about his wishes long before the need arose to face them head on. Anyone who has a loved one should make the time to discuss personal wishes before the need arises.” – Kay

“Becoming a caregiver in your twenties is not something many people ever think about, but I was faced with this scenario at the age of 23.  My fifty-four year old mother has Type 1 diabetes that went uncontrolled for many years.  She has developed many complications, including gastroparesis, retinopathy, neuropathy, and most recently, vascular dementia.  Because of her condition, I became a nurse at the age of 24 and her medical power of attorney at 25.  Becoming a caregiver can happen at any point in life, whether you’re middle aged and trying  to balance multiple responsibilities, or in my case, in your twenties just starting out in life. It can be both overwhelming and fulfilling at the same time.  I struggle with the decision to start my family or hold off to care for her.  I think it is important to acknowledge and support caregivers in their efforts to care for loved ones.  Having access to resources and support groups is critical for the care of the loved one and the caregiver.  I am proud to be my mother’s advocate and even more proud to be a part of an amazing group of people known as caregivers.”  - Meredith, ASU 

“In 2007, my 81 year old father asked me to be his and my mother’s power of attorney just in case it would be needed in the future.  My mother has Alzheimer’s disease and my father was her caretaker and took care of their finances. He was meticulous with money. He bought savings bonds and certificates of deposit as well as pre-paid for their funerals, but all of their bills were in his head and he kept no records. I asked him to tell me everything they owned or owed. We made an extensive list of their finances and we thought we had everything on paper. I was prepared to be a power of attorney!  My father became ill in September, 2009, deteriorated quickly, and died in December. Acting as my mother's power of attorney, I realized I was not as prepared as I had thought. Even though I had a list of the bills, many of the companies, banks, the Internal Revenue Service and the Veteran’s Association would not accept my power of attorney. What a mess I found myself in! Learning how to cash savings bond and certificates of deposit, pay a caregiver, buying insurance, apply for veteran's benefits, and paying bills and taxes has been an unbelievable journey. Since my father’s death, I have learned many things that would be of benefit to other caregivers.  As co-coordinator of the St Mary's NICHE program, I realize that I have a mountain of knowledge to share with others. As a power of attorney or caregiver, we owe our elders to be respectful of their needs and finances.” - Colleen Herbig, 2North

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