Wednesday, December 03, 2003

So many people are out there, caring for loved ones that can no longer care for themselves. They're called caregivers, a lovely term, but it is describing one of the hardest jobs there are. Nothing new, mind you, since people have been doing it for centuries, of course. I'm bringing it up, however, in the modern sense in our culture. Caregivers are one of those invisible groups that most of us either don't know about, think about, and sometimes even when we do, don't acknowledge. Especially when it comes to acknowledging this challenging and physically/financially/emotionally-draining job by offering support. Kind words are nice, but offering a caregiver a day off is better.

Below is a 'caregiving note' recently published in a newsletter I subscribe to, from a fellow caregiver asking for feedback by other subscribers on a situation facing her. Subscribers are asked to offer their ideas to the person writing in. Under her note is my response to her...
It isn't easy for anyone to be around my husband, including my brother and sisters . MY husband suffered a traumatic brain injury in March of 1999, while skiing. I have chosen to care for him at home.

My husband and I loved to travel before accident. We have sometime shares, so I called my brother and asked if he and his new wife might like to join us next summer at a date that would be convenient for them. My brother called me the next day apologizing he said he's sorry, but since My husband's accident, they aren't comfortable around him, and they wouldn't be able to relax. They would rather not make plans with them. My sister who is a CNA, has not been interested in a trip to "help" out even if I paid her way.

I don't receive any help from my family, but my 5 girls are all supportive to a certain extent. They say it would be embarrassing to help change Daddy. I could understand these feelings in the beginning, but after 4 1/2 years I wish there was an attitude adjustment. The general feeling is that there are skilled care facilities to take care of people like my husband. I know that he wouldn't do well or live long there.

Thanks for reading,

My answer...

It is unfortunate that your daughters are not willing to try to overcome their discomfort to help you. I am a daughter who helped my father with personal care, and while it was strange at the beginning, I felt more compassion than anything because my Dad was probably very embarrassed. His situation was physical only, mentally he was fine, he knew what was going on. My point is, you need help. You needed it 4 1/2 years ago and you definitely need it now! If your daughters or relatives cannot or will not provide you necessary respite, then is respite care through your county, state or local private companies an option for you? If not, you may have to compromise and seriously consider skilled care. If you research available local skilled care facilities, talking and working with the staffs, I have a feeling you can find a good fit for your husband and yourself. Many such facilities not only allow but welcome family involvement. You can continue to participate in the care of your husband, but at the same time continue living life as your husband would surely want. It's NOT selfish to think this way, trust me, Betty. My own mother is now in a wonderful assisted living facility that is more like a cross between assisted living and skilled care. It's private, run by a family, and only has 30 residents. I've gotten to know them all, and while Mom was nervous about it, she has come to greatly appreciate the facility and its staff. I hope this helps you...