My whole world zeroed in on the doctor’s lips as he asked me if I wanted them to keep my mother on life support or to let her die “a natural death.” It was as if I were watching a movie where the rest of the room blacked out and those lips grew to take up entire screen. As I sat there momentarily frozen, my mind went back over the last 10 years of progressive illness my mother had gone though, her increasing dependence on medication, extended hospital stays, and a final, bedridden unhappiness that nothing I could do would alleviate.
That moment resurfaced when I was once again taking care of a family member, this time my sister, Sherry, who had begun to lose her battle with breast cancer. Cleaning up after a nasty post-chemo bout, Sherry and I started talking about caring for mom, how she felt bad that I had been the main caregiver, especially given that I was not only a woman, but single as well. She was worried that I was once again “assuming the role” with her and yet was so glad that I was there. Ever honest, she said, “I don’t know if I would have been there for you if our roles were reversed.”
These memories surged to the foreground when I read that Fem2.0 was hosting a caregiving twittercast tonight (7/13/09) at 10 p.m. (#fem2) with the National Family Caregivers Association and the Christopher and Dana Reeve Foundation. They are asking for those with caregiving experience, either as a family member like myself or those in the profession to tell their stories (you still have time: info@fem2pt0.com)
I also did a bit of research and found that home care appears yearly on the Forbes list of the 25 worst-paying jobs, as mentioned in the poignant article, “Marilyn Daniel’s Reward,” a true story of two elderly women living alone and taking care of each other. The National Alliance for Caregiving posted a recent study by Evercare showing the impact of the recession on family caregivers. According to the study:
- Fifty percent of working caregivers said they were less comfortable taking time off from work to provide care.
- One in three working caregivers reported they were having to work more hours or get an additional job.
- Forty-three percent of working caregivers have had their work hours or pay cut.
- One in six (15 percent) said that the downturn has caused them to lose their job or be laid off.
Ask anyone and the odds are they tell of a woman,caregiver, paid professional and family members alike. The Family Caregiver Alliance gives these statistics:
The value of the informal care that women provide ranges from $148 billion to $188 billion annually. Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving — hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.
I was one of the lucky ones. There were additional family and amazing friends to help take care of my mother and my sister. I can’t say enough about the Vermont Hospice system and how much they do to help the home caregiver. But this is the exception rather than the rule; caregiving needs attention on the highest levels. Start tonight and participate tonight on the Fem2 twittercast. Support AAUW’s position on work/life balance and the Healthy Families Act. And most of all, do your own research and find out what you need to know if you are facing caregiving issues. It’s almost impossible to do it alone.
I also appreciated your emotional post. I hope the twittercasts went well and that you start to find some solutions, or coping mechanisms, to those who are neglected in our business.
Elderguru: Very true, it’s time to include men when thinking of caregiving, sometimes they are not given the credit they deserve as current or potential caregivers or they themselves don’t realize the need to step up to the plate.
Jackie: Thanks for recommending the book and for sharing your story. Every resource that helps one get through such a tough time is so appreciated.
Sue: Anniversary’s are hard, some don’t seem to get easier “as time passes”. So glad you and your sister were there for each other.
I’ve seen it first hand. Professionals are far more apt to tell men they should consider placing his mom/dad, than to tell a daughter the same thing. They subconsciously assume the daughter has the time and ability, whereas the son does not.
If you haven’t read Mary Pipher’s book Another Country: Navigating the Emotional Terrain of our Elders, I recommend that you do. When my mother died, after living with my husband and me for the final three years of her life, a neighbor gave me the book. I thought at the time that it was a very odd “gift” but found it a great comfort. I had done many things right…not everything, but a lot of things. It was a difficult three years, but gave me time to get to know my mother, my husband, and myself better.
a particularly poignant posting for me – as tomorrow is the third anniversary of my father’s death – a caregiving experience shared with my wonderful sister. my sister is the health care professional; I am the pragmatic business oriented sister. we’ve talked (and talked) about this – no one ever asked me if I wanted to take care of the personal aspects of my father – as he lay dying. it was expected. while I treasure one afternoon when he was still with it – and we picked over his medals and clippings from his police work – the remainder of it – bathing him, cleaning him up, was so out of my comfort level that it took me a long time to get by that. I’ve heard people say – well – you were his daughter – that’s what daughter’s do. and we did. thank god for my sister. We were both with him when he died – both asleep on the living room floor. It was up to us to tell our mom.
Thanks for sharing your stories. There is no doubt, caregiving impacts all families in one way or the other. Fem2.0 had a twittercast on this subject last night (7/13/09) and many shared their stories. http://bit.ly/BN4Zv
In addition, one individual pointed out current legislation geared to help caregivers: http://tinyurl.com/ncga6e
It was mid July, halfway through the last two months of my mohters life. I am a school nurse and was lucky to be off for the summer so I could be with her and share this precious time with her. We were sitting across from each other, her on the couch and me in her chair. I started to cry so went over to her for a hug. She held me tight and said “don’t cry I have had a full wonderful life.” I said through my tears ” I am not crying for you but for me.”
That was four summers ago. My heart is heavy with her absence but full of joy and gratitude for the woman I have become due to being raised and befriended by a loving, intellegent, strong mother.
I remember walking up the hill to your mom’s and not knowing what would be inside the door. You were amazing and I felt completely useless.
Then Sherry arrived with breast cancer. I can never express to you how proud I am of you and what you did for the women in your family.
I have to go cry now.
love, franny
I appreciate your Blog entry regarding caregivers. I will face that someday soon with my mother (late stage COPD).