Cynthia from Connecticut

My name is Ceci and I am a caregiver for my father Rodger. He is 91, diagnosed with Alzheimer's, heart failure (with an Implantable cardioverter-defibrillator) and kidney disease. I have been caring for him since 2008, while working a full-time job. In 2011, I had to enroll him in a medical adult day program because he was no longer safe being left to his own devices while I was at work. He is in need of total care for all of his daily needs. He has beaten many odds over the last number of years, including numerous Urinary Track Infections, Sepsis, 2 bouts of appendicitis, Hyperkalemia due to allergic reaction to Bactrim, gall stones with infection, brain bleed due to fall and pneumonia. He is not a surgical candidate and has a Do Not Resuscitate, yet has beaten the odds every time, which I am extremely thankful for. If there is one thing I would like to clarify, it is that for many of us, caretaking is many more hours than the stated average of 21 hours a week. In my situation, it is 50 hours a week of awake hours, not to mention, even when we are sleeping we are care giving. The multiple times of getting up in the middle of the night due to your loved one's need to use the bathroom or need to be cleaned due to bowel incontinence, their getting up and wandering in the dark, restless nights where they scream and thrash about while sleeping and the list goes on and on.

The hardest part of being a fulltime caregiver is getting time off for yourself. The process of going through an agency, in order for insurance to cover it, is daunting to say the least and the number of hours available is not compatible with our needs. The out of pocket cost of keeping your loved one at home is also another added stress. My dad is on a fixed income, but he doesn't qualify for Medicaid. Therefore, I have had to be very creative in making his money stretch to cover his day program, secondary insurance, his share of household bills, taxes, insurances and private pay sitters to stay with him so that I can have a weekend away or attend a after hours work function, etc.

I honestly would not change a thing in my caring for him and honoring his wish to remain in his home until it is his time to go. I just wish there was more resources for financial assistance, easier processes to obtain help and tax relief for both the individual and their caregiver. Lastly, education needs to improve for hospital staff who care for our loved ones with dementia/Alzheimer's.

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