Caring Today Community -

• My Story

Welcome. How long have you been a caregiver? What's your story?

Finding me on this website can be easier than you think. Besides being a caregiver for my 85-year-old mother (alzheimer's/diabetes) and concerned about my brother (depression), I am executive editor of this website. You can read about much of my caregiving experience and my views on caregiving in this website's blog, The Caring Mind (just click on those words just under the CT Community logo).

Before coming to Caring Today, I helped care for my now-late father (heart disease) while simultaneously caring for my now-late wife (scleroderma/pulmonary hypertension) and raising my daughter (she's healthy and just started college, thank goodness). I also supported my late wife while she cared for her mother (heart disease/diabetes/Lupus).

So I've done--and continue to do--my time as a caregiver. I understand the emotional pulls and tugs a caregiver can have from a variety of perspectives. And even though each case is different and our care recipients' ailments are not the same, much of the caregiver experience is identical. The stress, the caregiver guilt, the need to learn what to do in a short period of time, the sense of insecurity, loneliness, anxiety. There's the communication with our loved one, with his or her doctors and pharmacists, with those who want to help--and with those who refuse to offer assistance even when politely asked.

Simply, I get it. So if you want to talk about what you're going through, if you need to vent, just keep the conversation going and we'll see who will join in.

I have been a caregiver for my multihandicapped daughter for 35 years. She is downs, cerebal palsy, severe sleep apenea, epilepsy, arthritis (osto and rh) and lupus. I will be 71 years old on 11/3 and at this point in my life I feel totally alone, lost, unloved and extremely depressed. I am not in good health my self (sleep apenea, arthritis (osto&rh and lupus), diabetes, lung capacity is down to 70% due to second hand smoke, fibermyalgia, chronic fatigue and so forth. Don't get me wrong I love my daughter more than life itself. She is sweet and loving, but she has lost all desire to walk again and that has made my life hell. I have gone through two agencies, two personal care assistants because I would not allow them to jerk her around or make her feel guilty about not being able to help more with moving, etc. I guess right now what I am lacking in my life is the ability to let go and take better care of myself so I can help her more. I really need a big hug from someone other than God. He is my source for strength, but human arms help a lot sometimes. I need to find some help to get pain management for both of us from someone else than the normal pain management doctors. They only want to use drugs which do nothing but mask the problem and do more harm to our bodies. I have started accupuncture, with massage and physical therapy for myself and for the first time I am out of pain. The problem is that medicare will not pay for Angie (my daughter) to have accupuncture which is the only reasonable way to go with all her disabilities. Medicare will not pay for accupuncture for me and being on social security that means that I take money from the food line to pay for this treatment. What is a person to do especially when I feel like I have to start a fight with Congress. Thank you for listening. That helps a lot. I have three sons and one grown daughter but they do not want to be involved in my problems as they all have families of there own. I try to talk with them but it goes nowhere. Angie is their stepsister. I think they forgot about the cinderella story.

I just joined this website and wanted to say hi.