Monthly Archives: January 2017

“Finding Your Voice as a Patient Advocate: A Bed’s Eye View”

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“Finding Your Voice as a Patient Advocate: A Bed’s Eye View”

Local Brain Support Network member Denise shared this article from the March/April 2009 issue of the North Carolina Medical Journal.  It was written by Tiffany Christensen, who has cystic fibrosis.  Tiffany offers advice and insights to those coping with a long-term illness.

Tiffany addresses being a “medical advocate” and an “emotional advocate.”  She notes that:

“Perhaps the greatest irony of illness is that, in today’s complicated health care system, when a patient is at their worst is exactly when they need to be at their best.” 

So the patient can either learn to become his/her own medical and emotional advocate or find others who can perform these roles.

Denise was particularly impressed with Tiffany’s comments about caring for one’s emotional state, not only from the patient’s point of view, but also the care partner’s.  Tiffany writes:

“When I was gravely ill with chronic rejection, I sought out the counsel of a therapist. I have never made a wiser choice in my life. There are so many intense emotions that come with illness: feeling like you have lost your identity, the uncertainty of tomorrow, the deep loss of purpose. I was surprised to find that my family and friends were not the sanctuary for these emotions I once imagined they would be. They love me deeply, but we immediately began to protect each other from our pain; we all worried about burdening the other with heavy emotion. Being an emotional advocate might mean being the ‘safe person’ for someone experiencing a health crisis. It might be the patient herself setting boundaries with those activities or individuals which cause them undue stress. It could be as simple as creating a visiting schedule to avoid the exhaustion that can come from having too many visitors when you are trying to recover. Emotional advocacy goes hand in hand with medical advocacy; I have found it nearly impossible for one to succeed without the other.”

Tiffany offers three steps for dealing with a medical decision you find overwhelming, rushed, or with which you are unclear or uncomfortable.  These steps are:

1. Slow down the conversation.  Say “I’m sorry, I’m feeling overwhelmed.  Can I take a moment?”

2. State your concerns and ask for clarity.  Make the professional’s recommendation into a dialogue, not a decree.

3. Propose your solution, such as asking for a second opinion, or going with the least invasive procedure, first.

Here’s a link to the article:

classic.ncmedicaljournal.com/wp-content/uploads/NCMJ/Mar-Apr-09/Christensen.pdf

Finding Your Voice as a Patient Advocate: A Bed’s Eye View
North Carolina Medical Journal
Volume 70, Number 2, March/April 2009
by Tiffany Christensen

Happy advocating!

Robin

 

“On Living” – new book by hospice chaplain

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“On Living” – new book by hospice chaplain

Massachusetts hospice chaplain Kerry Egan has written a book about her talks with the dying titled “On Living.”  Next Avenue (nextavenue.com) recently talked with Kerry Egan about her book.

The interviewer asked:  What message do you hope people take away from the book?

Here is part of Kerry Egan’s answer:

“People who are dying and people who are caring for people who are dying are just normal human beings.  In our culture we have such a fear of death, and that bleeds over to people who are in the process of dying. And how very awful it must be to be doing this frightening thing — not everybody is frightened, but some are — and really want your friends and family to be with you. You’re lonely and you don’t feel good and you’re sick and you want the people you love to be with you and they’re afraid of you.  I hope people reading the book will come to this realization that there is nothing to be afraid of when people are dying. … And the caregivers of people who are dying are not saints or angels. They are just regular people, too, who also need you. If you’re afraid, that’s fine, but get over it and show up.”

Here’s a link to the Next Avenue article:

www.nextavenue.org/hospice-chaplain-talks-dying/

Hospice Chaplain Writes About Her Talks With the Dying
What she heard was unexpected, the ‘On Living’ author says
Next Avenue
By Emily Gurnon, Health & Caregiving Editor
January 11, 2017

Robin

NORD study welcomes those with rare diseases to participate

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Oregon State University is teaming up with the National Organization for Rare Disorders (NORD, rarediseases.org) in conducting a large-scale study about the “information and psychosocial support needs of people living with rare disorders.”  Only those with a rare disorder or undiagnosed rare condition may participate in this 40-minute online survey.  Caregivers are not eligible to participate at this time.

Within Brain Support Network, these three diagnoses are considered rare:

  • PSP (progressive supranuclear palsy)
  • MSA (multiple system atrophy)
  • CBD (corticobasal degeneration)

Of course, LBD (Lewy body dementia) is NOT a rare disorder.

If you are interested in participating, check out:

oregonstate.qualtrics.com/jfe/form/SV_7VEgG8kwTizenAN?platform=hootsuite

At the bottom of that webpage, click on the NEXT button to view the consent form and proceed to the study.

Robin

Article about a woman who lost her mom to PSP and her dad has re-married

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Article about a woman who lost her mom to PSP and her dad has re-married

A local Brain Support Network member just sent me a link to this un-dated article.  It might’ve been posted in December 2016.  It’s on the website “BLUNTmoms” (bluntmoms.com).  It’s an article by a woman who lost her mom at the age of 61 to PSP (progressive supranuclear palsy) about four years ago.  Her dad got re-married about 18 months ago.

The daughter admits she wasn’t very happy about the dad re-marrying.  But then describes a sweet story about everyone attending the state fair in October, with the new wife being very engaged with the daughter’s children.  The daughter says:

“Watching her with my children that day at the fair, I was overwhelmed by an aching sadness for the grandmothering my mom never got to do. But I also marveled at how life offers new beginnings, for all the premature endings. I felt gratitude for this woman who brought my dad back from the brink of despair. And I saw the beauty in the opportunity life has given this woman to bond so deeply with these children…especially my baby, my mom’s namesake.”

Here’s a link to the full article:

www.bluntmoms.com/holiday-season-celebrate-joy-memories-alike/

This Holiday Season Celebrate Joy And Memories Alike
Written by Joanna McFarland Owusu (guest author)
Blunt Moms
Mid-December(?) 2016 

Happy reading,
Robin

“Things I have learnt” (message to caregivers)

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“Things I have learnt” (message to caregivers)

Though this information was found on a PSP-focused online support group, I don’t think the content is PSP-specific.  I think all of the caregivers within Brain Support Network will find some value here.

The PSP Association — the UK-based advocacy organization in Europe for PSP (progressive supranuclear palsy) — hosts its online support forum with the website HealthUnlocked (healthunlocked.com).  A couple of days ago, a woman whose husband recently died with PSP, posted about “the things I have learnt.”

With the author’s permission, I’ve copied excerpts from her post below.  She asked that I remove her name and husband’s name from this post.  And she requests that no one contact her.

Her messages are for all caregivers.

Robin

——————————————–

Excerpts from post
The Things I Have Learnt
HealthUnlocked’s PSP Community
January 11, 2017

The things I have learnt? I suppose my main message is look after yourself. Those last few days, I did not take part in one bit of [my husband’s] personal care. I spent it, being his wife, loving him, snuggling up beside him in bed, telling him I loved him. It made it very special. In hindsight, that wonderful thing, I should have got others to take more of this responsibility off my shoulders, a long time ago. Spent more time, sitting and talking with him, not rushing around, in a mad whirl, trying to keep everything perfect, getting so, so tired, therefore, cross and being in total state of exhaustion, all the time. We all think, “nobody can look after their loved ones as well as me.” That I have to say, is rubbish!!! 99% of Steve’s carers, loved him and when I let them,(!!!!) could do everything, just as well as me, with the added bonus of a smile of their faces! The uniform of a Carer, takes away the embarrassment, that we all think, our loved ones suffer. This is my only regret, I tried to struggle, far too long, on my own.

The weeks [my husband] had in respite, helped in giving me a break, which meant I was able to carry on, that extra bit longer. Of course I felt guilty at the beginning, but now, oh, it was such a benefit to us both. Still, I am receiving the added bonus’s of it. I am use to being in the house on my own. I can go out with others, for a drink or a meal. I am able to walk into a supermarket and buy food just for me, without crying. I’m sure there will be moments, but not yet.

The hardest part of PSP? NOT now! I think it was more the middle bit, when his bladder stopped working, the constant clearing up of Urine. Falling. The long, slow loss of communication and the realisation, that PSP would win in the end. At the moment, it’s still a huge relief that [my husband] is no longer suffering from this evil disease.

You all know, I shouted, screamed, kicked and hated PSP with a vengeance. [My husband] did get this full frontal. But I won’t let myself feel guilty about this, I was just as much a victim of this illness as [my husband]. My only hope is, he understood.

I do feel very proud of myself, I looked after and cared for [my husband] until the end. Something every single one of you reading, has done, is doing and will do! Never, EVER doubt yourself, yes, you are tired, yes you are exhausted. The feeling of failure, is huge. We all feel that way, because, in the end, PSP does win. Its not because we are useless!

Copyright 2017, HealthUnlocked