Daughterhood Voices: When Answers are Hard to Find
A daughter bravely confronts challenges in getting her Dad in and out of the hospital safely.
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A daughter bravely confronts challenges in getting her Dad in and out of the hospital safely.
Really enjoyed watching this video, Anne! Good to know I’m not alone in thinking a lot about some of these issues, which I feel are going to become a bigger and bigger part of my life as the years pass by.
What we need to educate to others in this country, and maybe even world, is that we need to learn to be better advocates for our loved ones. We need to have open dialogue with our family members about what their wishes are and what our wishes are. It is an honor to carry out someone’s wishes, if we know what they are. That way, we are able to be the best care parter we can be! Caregiving is oneway. Carepartnering is empowering. I have worked in eldercare for 20+ years. Family members are regularly so caught up in the emotional side of things, that they do not ask the “right” questions. They regularly say things like, “This wasn’t supposed to happen to Daddy!” and “Momma’s always been the strong one!” The conversations need to happen yesterday. On the other hand, care Givers at hospitals and nursing homes need to be better at conveying information to families and certainly could be more empathetic.
In this specific situation, it seems like a discharge coordinator should have set up home health for the father in the story before discharging him from the rehab facility to his home. There are complications, such as insurance qualifiers, copays, etc. that may have prevented such, but there should have been better communication. I encourage family members to stop feeling guilty and start being advocates. Know your loved one’s wishes. Fight for your loved one’s wishes. Fight for their benefits. When carepartners get on the offensive about advocating for our loved ones, they are in a better posture for all involved. (I’ve been on the carepartner side, too!)
Once again Anne, you nailed it! The scenario is so familiar to me in my work as a Professional Geriatric Care Manager, and as an adult daughter of aging parents. Advocacy and care coordination take both time and knowledge of the systems. Few adult children have an abundance of either. Sometimes a Geriatric Care Manager can help to identify the issues, and navigate through the maze along with the family. Acceptance that there is no perfect path at these difficult junctures is helpful. Then choosing from among the possible options available is not as paralyzing.
I recommend the book, On Being Mortal, to anyone who is beginning to face the challenges of aging, for themes elves or their loved ones.
Keep up the good work, Anne. Your words and work are scratching a very chronic itch in this arena!
Shannon
I heartily agree with this video. Still, the ending left me hanging. So often, “all you can do” requires so much more than presence. Palliative Care & Hospice are worth a call in many situations. Disclaimer: I am a hospice RN. Families have places to turn, they do need more info. In many areas there are Visiting Physicians groups that have MD’s and NP’s that can come to the home. Pressing the Primary MD for continuation of Home Health due to bedridden status is a worthy endeavor. Nobody wants to be left hanging. Press on AND be there.
I love you so much Anne Tumlinson if I was by your side right now I would hug you a hundred times maybe two hundred. You nailed it and even though I know this story, have lived a similar one, for you to put it out there for the world to see gives me peace. Because as a caregiver for my Aunt, I always second guess myself. Is it me? Do I not know enough? Am I in a system that I just don’t understand their language? I have many stories…unnecessary ones. I hear stories from my clients too. And the best I can do for them is be a support when they are going through what can become absolutely absurd. Like my client calling me and saying “The rehab has lost my dad and I can’t find him.” Oh yes. She did find him at the hospital three hours later sitting there alone – he has dementia. The Daughterhood must be vigilant and even then being vigilant with a broken system is hair pulling frustrating. And I won’t give up.
The worst part of our medical system is the institutions that are supposed to bridge from inpatient hospital stays to home. They are understaffed; the staff are stressed, overworked and under paid. Many care about their patients, but don’t have the time they need. I was at the rehab/nursing home every day with my dad. I caught so many errors! He would be given the wrong meds, or the wrong dose. He would wait for hours past the time that he was supposed to get his pain meds. They wouldn’t listen when I told them he was very ill, and his hygiene was deplorable because the staff didn’t have time to help him. I cleaned his ears and helped him wash up before bedtime every day. On the days I couldn’t be there, that was not done. He never left the rehabilitation facility except to go to the hospital for multiple bouts of pneumonia. It’s really difficult not to blame myself for not getting him to the hospital sooner–he might not have weakened so quickly nor died so horribly.
As always, a simple thank you for a timely message. Your words are encouraging and soothing to a tired spirit. It is a long journey. It’s nice to hear a whispered voice saying …sometimes your presence is all that is possible and that is enough. blessings.
Excellent video, and great blog which I am glad to have discovered. I have taken the liberty to link this entry to a blog entry of our own, about the value of gathering information from a CCRC – if time allows – for such an organization has a good all-around grasp of what services are available to families. Blessings to you.
Thanks for sharing this poignant story of frustrations that are unfortunately all too common!
Agree with those who have suggested follow-up nursing/therapy from a certified home health agency. For good info on different home health care options (and info on all kinds of “managing healthcare” topics for family caregivers, I recommend NextStepInCare.org. The guide for home care is here:
http://www.nextstepincare.org/Caregiver_Home/Home_Care/