“The Hazards of Leaving the Hospital” and Planning for a Caregiver Emergency

This short article is about “post-hospital syndrome,” or the “wide range of adverse health events and complications” that result from the physical and emotional stress of being in the hospital.  Nearly one-fifth of Medicare patients end up being re-admitted to the hospital within 30 days.  Those who have been in the hospital need a long time to recover from the experience.

Part of the reason I’m sending out this article is to share the recent story of a local support group member who is the caregiver to her husband with Lewy Body Dementia.  The woman was experiencing bowel pain, and saw her doctor.  He ordered immediate surgery.  She was supposed to be in the hospital for 10 days but is still there 30 days later.  When she is finally discharged from the hospital, she will have to go to a skilled nursing facility.  Their son has had to step in to take care of both parents, neither of whom can really help now with decisions or planning.  The woman did not have a medical power-of-attorney that included her son; it had only included her husband.  And the woman had never thought about what might happen if she were in crisis.

It’s really important for caregivers to plan for the scenario of their ending up in the hospital on an emergency basis!  At least think about this.  Include your adult children or close friends in your thoughts.  Whose in charge?  Will this person have access to money?  Will this person know about your medical insurance?  What agency should be hired to care for the person with a neurological condition?  What care facility should the person with a neurological condition be moved to?

Here’s a link to the article on post-hospital syndrome:

online.wsj.com/article/SB10001424127887323826704578353131038599350.html

Journal Reports
The Hazards of Leaving the Hospital
The days and weeks after patients are sent home can be dangerous. Here’s how to avoid being readmitted.
Wall Street Journal
By Laura Landro
Updated March 15, 2013, 4:14 p.m. ET

Robin

“How to Live in Assisted Living,” avoiding despair and finding meaning (NYT, 3-20-13)

Certainly this post will be of interest to those who have a loved one in a care facility.  This post also has relevance for us all as we
strive to have meaningful lives and avoid despair.

This article is an interview with Martin Bayne who was diagnosed 18 years ago with Parkinson’s.  Ten years ago he moved into an assisted living facility in NY, and three years ago he relocated to a different facility in Pennsylvania.  Mr. Bayne sees assisted living “as a place to feel alive.”  In the interview, he talks about having a meaningful life.

Mr. Bayne occasionally blogs about assisted living at
thevoiceofagingboomers.com. One very beautiful post Martin wrote is here:  (again, this is relevant to us all)

thevoiceofagingboomers.com/2012/11/a-time-to-live-a-time-to-die/

Here’s a link to the New York Times interview with Martin Bayne:

newoldage.blogs.nytimes.com/2013/03/20/how-to-live-in-assisted-living

The New Old Age: Caring and Coping
Housing    
How to Live in Assisted Living
New York Times
By Judith Graham
March 20, 2013, 6:00 am  

Robin

Very small safety study of mesenchymal stem cells at Mayo Rochester

There was a South Korean mesenchymal stem cell trial in MSA-C that published its results last year.  Mesenchymal stem cells are stem cells from bone marrow.  33 patients with MSA-C received either the placebo (17) or MSCs (16).  MSCs or placebo were infused first into arteries and then intravenously, over a one-year period.  This study was double-blind (neither the researcher nor the patient knew if the patient was receiving the placebo or MSCs).  The results showed that patients improved on the unified MSA rating score but not in the quality of life scale.  Also, improvement was transient.

One researcher who co-authored an editorial published in conjunction with the results is Phillip Low, MD at Mayo Rochester.  He is perhaps the leading MSA researcher in the US.  In the editorial, an argument was made that a multicenter, double-blind study needed to be done.  I guess Dr. Low hasn’t been able to organize a multicenter study but he has organized a very small one, taking place at Mayo Rochester.  It’s a phase I safety study; it is NOT an efficacy study.

Mayo Rochester is not recruiting for the study.  Enrollment is by
invitation only.  The study focuses on those in the early phase of
MSA.  There is a rigorous selection process.  Also, the study requires an extended period in Rochester, MN.

Here’s some general info posted about the study on the ShyDrager Yahoo!Group in late January:

“A couple of days ago, my dad was contacted by Mayo Clinic to see if he would be willing to participate in a new study/trial involving stem cells. There would be two groups, one would receive one dose of stem cells, the other would receive two. The gist of it is that they would remove stem cells from the fat in his thigh, then they would be reinserted directly into his spinal fluid to avoid the blood/brain barrier. Apparently this is a new way of inserting the stem cells (vis a vis the trials that have been going on in Korea). I believe the patients are in the hospital for about 3 days, then have to go for weekly checkups for a month (in Rochester), then check ups every 6 months. If patient are chosen for the double dose, this would be repeated for another month.  Apparently volunteers would start treatment immediately vs. waiting for a certain amount of people.  The study title is:  Intrathecal Autologous Mesenchymal Stem Cell Therapy in MSA – Effect of Dose and Natural History.”

I know some caregivers were discussing this at last Sunday’s support group meeting.  Thought you’d all like to know about this. We do have one local support group member who plans to participate.

Robin

“After the Caregiving Ends”

There were two blog posts in last week’s New Old Age: Caring and Coping blog in the New York Times that were about life after caregiving.

Thursday’s article includes two stories.  One is about Sharon who cared for her husband with MSA while also dealing with breast cancer.  Not much is said about MSA (one of the disorders in our local support group) except that it is described as a “devastating diagnosis” and “looking after [her husband] and managing the inevitable medical crises occupied [Sharon’s] full-time attention.”

One of Thursday’s caregivers made these statements about caregiving for his father that really resonated with me:

“I don’t think anything I’d done up to that point can match what I did for my dad,” Darren said. “You learn whatever you thought your physical and emotional limitations were, you stretch beyond them to do what needs to be done. If anything, it’s made me a better attorney because there is no problem that’s going to come my way that is bigger than the life and death issues I dealt with with my dad.”

Thursday’s blog post also references a website that some “former
caregivers” or “veteran caregivers” may find of interest —
aftergiving.com.  The website describes itself as “a community of former family caregivers transitioning to a life after caregiving.”

Friday’s article also includes two stories about caregivers who derive comfort in knowing that they helped their family
members.

Here are links to both blog posts in case you want to read further.

Robin

——————————————————————

New Old Age: Caring and Coping
End-of-Life Care
After the Caregiving Ends
New York Times
By Judith Graham
March 7, 2013, 10:05 am

 

New Old Age: Caring and Coping
End-of-Life Care
After Caregiving, Comfort in Having Helped
New York Times
By Judith Graham
March 8, 2013, 7:02 am

 

Emily talks about her dad with MSA (audio recording, Feb 2013, Raleigh, NC)

Someone named Mark posted this today to the ShyDrager Yahoo!Group:

“As part of MSA Awareness month, I thought members of the group might be interested in listening to a story about MSA from my daughter’s perspective and told to an audience of about 100 people at a local story telling venue, The Monti, in Raleigh.

soundcloud.com/themonti/podcast-episode-56-emily

(After a short introduction, the story begins at the 1:04 mark)”

Within this audio recording, Emily Kotecki talks about her dad for about 10 minutes.  It’s very sweet and worth listening to.
At the top of this webpage. click on the gray horizontal bar at the top that looks like sound markings.

Use your cursor to scroll to 1:04, which is where Emily starts talking about childhood memories of her father.  At 4:27, Emily begins the MSA part of the story with info on symptoms.  At about 6:47, Emily reports that Mark is diagnosed with MSA by Mayo Rochester.  Emily notes that some things are changing (eg, her dad’s symptoms) and some things remain the same (eg, her dad’s humor).  Emily’s story ends about 11:00.  The last three minutes of the audio recording is music.

Robin

“Isolation: the Pain of the Caregiver’s Soul”

Here’s a short blog post about the sense of isolation that many
caregivers feel.  The author, a psychologist and social worker, offers some suggestions on how to overcome caregiver isolation.

Certainly these tips apply to us all — whether we are caregivers or care recipients.

Robin

————————————————————————–

caregiversos.org/isolation-the-pain-of-the-caregivers-soul-by-jamie-huysman-psyd-lcsw-cap-cft/

Isolation: the Pain of the Caregiver’s Soul
by Jamie Huysman, PsyD, LCSW, CAP, CFT
Caregiver SOS Blog
by WellMed Foundation

A recent AARP Magazine survey revealed that more Americans feel lonely today than they did a decade ago, and older Americans are particularly at risk. In fact, 44 million adults over the age of 45 suffer from chronic loneliness. We could factor in that as we grow older it’s “normal” to deal with grief, depression, medical challenges and loss of energy if we do not remain active.

I don’t agree with that. I think that very possibly the common
denominator most suspect in these tragic numbers might be that it’s “caregiving time.”

The number of caregivers in this world is staggering. At last count it was well over 64 million people in our general population. Of course, we do not see this pandemic because so many are hiding in their homes or detached and traumatized–watching the world go by.

A variety of studies has shown that there is a definite link as well between loneliness and diabetes, sleep disorders, compromised immunological system. There is even some speculation that loneliness can play a role in Alzheimer’s disease.

So much happens to us when we are lonely. Our self esteem suffers so we eat more unhealthy foods more often. Nutrition can be a factor in shaping our state of mind. Sleep becomes a problem as isolation and depression can keep us up at night; and lack of sleep exacerbates almost all medical conditions.

It follows a logical destructive pattern. You’re lonely so you eat. You gain weight and put yourself at risk for diabetes. You can’t sleep in part because of depression. When you’re caregiving, it’s likely that you’re up and down several times a night to check on or assist your loved one–and your immune system suffers.

So what can you do when you find yourself at this crossroads?

Join a support group today. The impact on us around education and dealing with the loneliness is better than any call you could make right now.

1.  Reach out and get in touch with those friends you haven’t
connected with in a while. Get past all that and force yourself to
make those calls to people, places and organizations that make you feel comfortable. Introduce yourself and have a cup of tea with individuals most responsive to you.

2.  Some of the best friendships I have seen blossom have evolved when one of the friends was a caregiver.

3.  Reach out and help someone. Once a month, do something for someone who’s in a situation more difficult than yours.

Caregiving and loneliness can go hand in hand. Refuse to accept this isolation as your fate. Reclaim some power here. When you think of loneliness as a temporary state, you can do something about it.  Make the effort. You are worth it!  And the good thing about reaching out to others is that when you do, they will reach back.

 

“Five Things Physicians and Patients Should Question” (geriatrics; hospice)

The “New Old Age: Caring and Coping” blog of the New York Times has been covering the “Choosing Wisely” campaign.  This campaign is an attempt to provide laypeople and doctors with a list of tests to avoid.  Each medical specialty has been asked to develop a list of “Five Things Physicians and Patients Should Question.”  Lists from the American Geriatrics Society and the American Academy of Hospice and Palliative Medicine were published last week on the “Choosing Wisely” website (choosingwisely.org).

AMERICAN GERIATRICS SOCIETY LIST

Here’s the American Geriatrics Society list:  (see the webpage for a few more sentences on each item)

www.choosingwisely.org/doctor-patient-lists/american-geriatrics-society/

1.  Don’t recommend percutaneous feeding tubes in patients with
advanced dementia; instead offer oral assisted feeding.

2.  Don’t use antipsychotics as first choice to treat behavioral and
psychological symptoms of dementia.

3.  Avoid using medications to achieve hemoglobin A1c <7.5% in most adults age 65 and older; moderate control is generally better.

4.  Don’t use benzodiazepines or other sedative-hypnotics in older
adults as first choice for insomnia, agitation or delirium.

5.  Don’t use antimicrobials to treat bacteriuria in older adults
unless specific urinary tract symptoms are present.

AMERICAN ACADEMY OF HOSPICE AND PALLIATIVE MEDICINE

1.  Don’t recommend percutaneous feeding tubes in patients with
advanced dementia; instead, offer oral assisted feeding.

2.  Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.

3.  Don’t leave an implantable cardioverter-defibrillator (ICD)
activated when it is inconsistent with the patient/family goals of
care.

4.  Don’t recommend more than a single fraction of palliative
radiation for an uncomplicated painful bone metastasis.

5.  Don’t use topical lorazepam (Ativan), diphenhydramine (Benadryl), haloperidol (Haldol) (“ABH”) gel for nausea.

And here’s a link to the “New Old Age: Caring and Coping” blog post about these two lists:

newoldage.blogs.nytimes.com/2013/02/28/for-the-elderly-lists-of-tests-to-avoid/

The New Old Age: Caring and Coping
Health Care
For the Elderly, Lists of Tests to Avoid
New York Times
By Paula Span
February 28, 2013, 6:54 am

Robin

Drugs to avoid or be cautious of in the elderly (2-page Canadian cheat-sheet)

Group member Dorothy emailed me this link recently:

www.rxfiles.ca/rxfiles/uploads/documents/psyc-elderly.pdf

Psychotropic Drugs in the Elderly
Treatment Considerations
Sept 2011
The RxFiles Academic Detailing Program
Saskatoon City Hospital

It’s sort of like a two-page “cheat sheet” for medical professionals on:

  • what medications the elderly should avoid or be cautious of
  • suggested medications for depression, insomnia, pain, psychosis, agitation, anxiety, etc.
  • how to assess and treat what are known as BPSD (behavioral and psychological symptoms of dementia)

Throughout the cheat sheet, the acronym SE is used.  This refers to “side effects.”

One thing that is obviously missing — but it’s not part of this chart
— is what medications to avoid if dealing with a person with
Parkinson’s Disease or parkinsonism.  For example, some medications have anti-dopamine effects, and they shouldn’t be given to people to parkinsonism.  A less-sophisticated but more user-friendly list of medications to avoid with PD can be found here:

www.apdaparkinson.org/userfiles/files/Medications%20to%20be%20Avoided%207-11.pdf

If you find other things missing or items you would take issue with on the “cheat sheet,” please let me know!  This is the sort of document where more than one reviewer is needed as it’s densely-packed with details.

Robin