The ePrognosis website at UCSF (eprognosis.ucsf.edu) has various calculators for determining the prognosis of seniors. See:
www.eprognosis.org/p/
There are four top-level categories, based upon where the patient is — living in the community, living in a nursing home, hospitalized, or outpatients with advanced cancer.
This website is designed for physicians so that they can determine the prognosis and learn communication skills for discussing the prognosis with families.
Last year I came across information about a short documentary film called “Life @ the end, caring in the face of loss.” You might be able to find the 28-minute video online but local support group member Denise recommends not taking the time to watch it. She says that there’s not much new information in the video.
Instead, she shares the “good reminders” the film raises, including:
* 40% of caregivers die before care recipients
* there are a diversity of approaches to caregiving
* how difficult the transition back to a normal life can be
Here’s what Denise says about the film….
Robin
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Denise’s notes on
Life @ the end, caring in the face of loss
documentary film by Jennifer Molina & Farah Dosani, 2011
Distributed by Health News from Florida Public Media
Running Time: 28 minutes
“Love knows not its own depth until the hour of separation.” Khalil Gibran
That’s a quote from a touching video Robin asked me to review. It really reiterates what we already know about caregiving, because we are caregivers, and this is just interviews with caregivers. There’s no new information here. I wouldn’t recommend taking the time to watch it, but there are a few good reminders.
Nearly 1/4 of the population in the U.S. is engaged in family caregiving. As the title of the film denotes, it is because of love – even in the midst of mourning. But sometimes the motivation for uber-caring is to avoid any guilt after the person’s passing. You must feel you did everything you could, right? Be careful. Remember that the physical, emotional and financial stress of caregiving causes 40% to die before the person they’re caring for. If you don’t look after yourself, you may not survive them.
We commonly think of spousal caregiving or parent/child situations, but the face of caregiving is diverse. This video shares a same sex couple dealing with HIPAA rules, a family in which the ill father and his wife must care for two small children and himself simultaneously, and the impact on extended family who step in to support a primary caregiver.
Worth thinking about is that the diversity of people engaged in caregiving means there is also diversity of approaches to it, and ways of coping with the illness itself. The diagnosis, and finding how to live with it, clarifies and forever changes who each of you are. You may find yourself intensely worried about your partner and what the future holds, while they take their own therapies and symptoms in stride. You may become annoyed that a respite volunteer doesn’t do things the way you do, when you should be enjoying the respite, itself. You may need some support to handle your differences.
Finally, there will be an adjustment to life after caregiving. If its been all-consuming for you, it will leave an enormous vacuum when its over. One of the film’s subjects found that sharing with friends and family, during their journey through illness, all she had learned while caregiving, gave value to the loss of her partner. It perpetuated her identity as a caregiver but offered social interaction, support and transition back to a ‘normal’ life.
-Denise
This article is about brain donation in the UK, where a family encountered red tape. One of Brain Support Network’s missions is to figure out the red tape well in advance and overcome it. Please contact us if you’d like help making brain donation arrangements in advance.
https://www.theguardian.com/so
At a recent local atypical parkinsonism caregiver-only support group meeting, we talked about the importance of adult children knowing about their parents’ finances (especially where to find the necessary documents) and final wishes.
At the meeting, I mentioned a helpful article from the Wall Street Journal on this topic; I thought I’d share that resource more widely.
The article, titled “The 25 Documents You Need Before You Die,” instructs us to gather our important documents in one file box and tell family members where the file box is. This way family members don’t have to go hunting for these documents. The article notes that getting organized in this way provides huge piece of mind to parents and adult children.
The WSJ article suggests that one adult child work with one parent on this task. In one example, it took an entire year for a daughter and mother to go through all of the papers and visit all of the banks and brokerages to ensure the daughter was listed on the mother’s accounts.
The article notes the importance of having an original will and original trust documents in the file box. One expert says: If your family can’t find the original trust documents, you are “basically setting your estate up for litigation.”
Here’s a link to the WSJ article on the 25 documents:
online.wsj.com/article/SB10001424052702303627104576410234039258092.html
Weekend Investor
The 25 Documents You Need Before You Die
Wall Street Journal
By Saabira Chaudhuri
July 2, 2011
You may have to subscribe (or pay) to read the full article.
Beneath my name below, I’ve listed some of the documents you need to have.
One final note: It may be hard for a wife, who has never had responsibility for finances and legal documents, to ask her husband, now diagnosed with a neurodegenerative disorder, about these 25 documents. That’s why I think adult children can naturally champion this endeavor because, in the end, the adult children will get stuck with the task.
Robin
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The documents include:
This Wall Street Journal article from a couple of weeks ago is addressed to adult children but lots of the information applies to spouses and siblings as well. The many tasks that come with losing a parent are detailed — sifting through belongings, taking care of financial matters, doling out heirlooms, and documenting tax deductions if items are donated to charities.
Here’s a link to the full article:
online.wsj.com/article/SB10001424052970203920204577195292564700600.html
WEEKEND INVESTOR
Wall Street Journal
The Pearls Are Mine!
By Kelly Greene
February 4, 2012
Robin
