“Preparing For A Future That Includes Aging Parents” (NPR)

This post may be of interest to adult children and parents with children, or those interested in the costs of long-term care (adult day services, home care, assisted living, nursing home).

As part of an NPR series on multigenerational households, “Family Matters,” there’s an article about the adult children assuming the financial costs of caring for aging parents.

You can find the “Family Matters” series here:
www.npr.org/series/150002308/family-matters

Here are key excerpts from the article “Preparing For A Future That Includes Aging Parents”:

* “While aging is inevitable, planning for the costs associated with dependency in the latter phase of life doesn’t come easily to most Americans.”

* “People dread talking about it because we don’t like to face our mortality,” says Jack Hetherington, a certified elder-law attorney in suburban Philadelphia. He estimates that fewer than 1 person in 5 takes even the first steps needed to prepare legally and financially for taking care of an incapacitated parent.

* “But with Americans living so much longer now, the younger generation has to do more thinking about how they might care for parents who have exhausted their savings.”

* “Experts say any serious plan for caring for aging parents must begin — not with discussions about money — but with a legal document designating someone as having ‘power of attorney.’ That paperwork grants authority to another individual to handle decisions if a loved one can’t make them as a result of illness or memory loss.”

* “Once the legal paperwork is done, families can turn to an array of sources for legitimate advice on boosting savings, buying appropriate insurance and maximizing home equity.”

A link to the article and the full text are below.

At the very bottom of the online article is a chart on the costs of elder care, according to the MetLife 2011 Market Survey of Long-Term Care Costs.

Robin

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www.npr.org/2012/04/24/150587638/preparing-for-a-future-that-includes-aging-parents

Preparing For A Future That Includes Aging Parents  (Part of the Family Matters series)
NPR
by Marilyn Geewax
April 24, 2012

Planning a wedding is exciting.

Mapping out a vacation is fun.

Figuring how to afford care for your confused, elderly father? That one may never cross your mind — at least, not until you need more money to care for him.

“Never thought about it,” Natasha Shamone-Gilmore, 58, says about her younger self. “Never ever.”

She thinks about it a lot these days. Shamone-Gilmore, a computer trainer in Maryland, now shares a modest home with her husband, 24-year-old son and 81-year-old father.

Like millions of other middle-aged Americans, she had long regarded her parents as robust adults, more than capable of managing their own affairs. “My mom was a very active woman; my dad … was a Safeway employee for 40-something years,” she said.

But time does what it does, and today, her father needs a caretaker. So she has had to step into that role and figure out how to make it all work financially.

Shamone-Gilmore’s family is one of three multigenerational households being profiled by NPR this spring. Their stories will help highlight the importance of family financial planning. The series, Family Matters, began last week and will continue in installments each Tuesday into June.

While aging is inevitable, planning for the costs associated with dependency in the latter phase of life doesn’t come easily to most Americans.

“People dread talking about it because we don’t like to face our mortality,” says Jack Hetherington, a certified elder-law attorney in suburban Philadelphia. He estimates that fewer than 1 person in 5 takes even the first steps needed to prepare legally and financially for taking care of an incapacitated parent.

Consider this contrast between expectations and reality:

Only 13 percent of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report believe that the need for long-term care would affect their families.

And yet providing long-term care is, in fact, common. Nearly 10 million adult children are caring for aging parents, according to the MetLife Mature Market Institute. Other adult children are contributing to the cost of a parent’s assisted-living care, which MetLife says averages about $3,500 a month.

“The percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years,” the research group found.

Of course, in today’s tough economy, it also is common for elderly adults to be supporting their adult children. But in some ways, that’s easier to accept: Parents often plan to leave whatever wealth they have to their children anyway. The flow of wealth from older to younger generation feels natural to many.

But with Americans living so much longer now, the younger generation has to do more thinking about how they might care for parents who have exhausted their savings.

“That’s a tough one,” says Paul Taylor, director of the Pew Research Center’s Social and Demographic Trends project. “You have lots of uncertainties in your own life, let alone worrying about paying for your parents’ care.”

So like many other baby boomers, Shamone-Gilmore is struggling with bills, and hoping to reform her family for the future.

“Now that it’s happened to us, and I am the household coordinator, I am now trying to educate the entire family that: You guys need to get in line,” she says. “We’re not thinking. No one is thinking.”

Experts say any serious plan for caring for aging parents must begin — not with discussions about money — but with a legal document designating someone as having “power of attorney.” That paperwork grants authority to another individual to handle decisions if a loved one can’t make them as a result of illness or memory loss.

“The purpose is to provide a safety net in case of incapacity,” Hetherington says. “If you wait too long and you don’t have the capacity to make decisions, you end up in guardianship court, and that could involve lawyers, doctors, judges, time and money.”

Once the legal paperwork is done, families can turn to an array of sources for legitimate advice on boosting savings, buying appropriate insurance and maximizing home equity.

For example, many employers offer workplace benefits that include free financial planning services. Credit unions can help, too. Public library shelves are loaded with books on how to get started making a financial plan, and websites, such as HelloWallet (hellowallet.com) and Mint.com, offer help.

Individuals can ask for professional referrals from the National Association of Personal Financial Advisors (napfa.org).

Hetherington says taking those first steps can be difficult. “But it’s the only way of avoiding problems down the road,” he says.

Guide to PSP and CBD for General Practitioners

This terrific guide for general practitioners on two disorders — progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).  The guide was published by the PSP Association, based in the UK (pspeur.org).  The guide covers many topics including diagnosis, treatment (management, medication), difficult conversations, cognition and behavior, end-of-life care, support for carers, and stem cell treatment.

Here’s a link to the guide:

www.pspeur.org/user/docs/PSPA%20GP%20Guide%20April%202012.pdf

A Guide to PSP and CBD for General Practitioners and Community Nurses
PSP Association, UK
June 2010

Probably many of us are envious of the “multi-disciplinary care team” available to those in the UK.  Note that a lot of the terms and certainly medication names are specific to the UK.

Helping caregivers “find their way back into society”

My online friend Lynn, whose mother with Lewy Body Dementia (autopsy-confirmed) died a few months ago, shared this article in her local Tampa newspaper with me today.  She said it rang true for her.

The author of the newspaper article is Gary Joseph LeBlanc, who wrote the book “Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving.”  I shared some book excerpts on caregiver guilt in February 2012.

In the Tampa Tribune article, Mr. LeBlanc says:

“Reportedly, 45 percent of caregivers will go through mild to severe depression for up to two or three years after a loved one has passed. Many will never fully recover and once again enjoy a functional social life. They must learn to slowly accept the up and down changes one day at a time. It’s highly unlikely that those who have traveled down the rough road of caregiving will ever look at life in the same manner, but I mean that in a good way. Most come away with tremendous growth in their emotional and spiritual inner being. But there’s no question that there is a recovery stage one must go through. So, if you know of any caregivers who have recently lost a loved one, help them find their way back into today’s society. Take them to lunch or to an uplifting movie. Simply getting them out of their house may bounce them back on the right path to start enjoying life again.”

Here’s a link to the full article:

www2.tbo.com/lifestyles/health-4-you/2012/apr/21/4unewso19-offer-friendship-to-lonely-longtime-care-ar-394361/

Offer friendship to lonely longtime caregiver
Tampa Tribune
By Gary Joseph LeBlanc | Special correspondent
Published: April 21, 2012

New Forum Area of MSA Trust Website

Many of you know of the UK-based Sarah Matheson Trust, which is now called the Multiple System Atrophy Trust.  They have a great website — msatrust.org.uk — with high quality MSA information.

I was digging around their website tonight, when I realized that they have a new forum area.  Registration is required to post to the forum but it’s not required to read posts on the forum.  Here’s a link directly to the MSA Trust Forum:

www.msatrust.org.uk/our-forum/the-community-group3/forum-forum1

The two “hottest” topics on the Forum are about “diagnosis” and “symptoms compared.”

In a post about whether MSA can occur without orthostatic hypotension, one of the RNs at the MSA Trust replied as follows:

“Not everyone with MSA will have postural hypotension. We would expect to see an autonomic dysfunction for it to be diagnosed as MSA however. People living with Parkinson’s can have a postural drop, but the Parksinson’s medications can also lower blood pressure. Not straight forward to reply to I am afraid as everyone is so individual.”

This forum is certainly not as active as the ShyDrager Yahoo!Group but the discussion is easy to follow on the forum.

New (but not so active) Canadian MSAer’s Blog

I stumbled across this multiple system atrophy-related blog tonight:

http://cmsasg.graphimania.ca/
Canadian Multiple System Atrophy Support Group
Information for the Canadian victim and caregivers

There is only one introductory blog post, made in late January 2012.  I’ve copied it below.  If, later on, you see additional posts there that make worthwhile reading, please let me know!

In a section on “Clinical Trials,” there’s info about the rifampicin trial going on in the US.  The Canadian blogger notes that he/she is also trying rifampicin, prescribed by an MD in Canada.

There is a section on “What is Multiple System Atrophy!”

Robin

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My Experiences With MSA
Posted on January 29, 2012

The real battle is information, the diagnosis of MSA and finding a knowledgeable Doctor is a struggle and that’s where I hope to help my fellow Canadians. I hope to do this by gathering all the useful information and resources I can collect into one central location. I would also encourage any person or organization that wishes to contribute to feel free to post content to this site or an email address/link and I will respond asap.

My initial personal experience was one of frustration and disappointment followed by some seriously amazing support! I will share my experiences with you in an effort to hopefully spare you some of my frustrations! I suffered with chronic exhaustion, stiffness of joints, sore muscles with various other ailments and symptoms. My doctor did test after test, I visited specialist galore all to no avail, these were later identified as MSA symptoms.

The simple truth  was that my doctor simply had no exposure or experience with MSA, and it was only by luck that after years of working together to try and find out what was wrong we got a break. He was attending a seminar presented by Dr. Joyce Lee and after listening to an in depth diagnosis he realize that he indeed knew somebody that was showing the symptoms she was describing, me! Shortly after that I had a session where my blood pressure crashed into the low 70s and then skyrocketed to the high 190s at one point rose to 215 and above, totally out of control and unregulated!

This proved to be a turning point as we all know unregulated blood-pressure is one of the more serious problems with MSA and was confirmation of our suspicions! An appointment was booked with Dr. Joyce Lee for a conclusive diagnosis which turned out to be positive for MSA.

Beers Criteria – what medications older adults should avoid or use with caution (updated March 2012)

This is an important New York Times article about a “crisis among the elderly” — they are being prescribed too many pills.

With the support of the American Geriatrics Society (americangeriatrics.org), a panel of 11 experts has updated what is known as the “Beers Criteria”:

“[These are] guidelines long used to minimize…drug-related disasters in the elderly.  … The team highlighted 53 potentially inappropriate medications or classes of medication and placed them in one of three categories: drugs to avoid in general in the elderly; drugs to avoid in older people with certain diseases and syndromes; and drugs to use with caution in the elderly if there are no acceptable alternatives.”

The article’s author notes that:

“[Just] because a drug is on one of the lists in the Beers Criteria does not mean every older person would be adversely affected by it. The drug may be essential for some patients, and there may be no safer alternative. When all is said and done, a doctor must weigh the benefits and risks.”

Here’s a link to the full article:

well.blogs.nytimes.com/2012/04/16/too-many-pills-for-aging-patients/

Too Many Pills for Aging Patients
Personal Health
New York Times
By Jane E. Broady
April 16, 2012, 5:41 pm

Here’s a link to the lay description of the Beers Criteria, updated in March 2012:

www.americangeriatrics.org/files/documents/beers/BeersCriteriaPublicTranslation.pdf

That PDF is important to print out and keep with your medication lists and medical records.

“Really? Constant Stress Makes You Sick” (NYT)

In this short post to the Well blog on the New York Times, the author asks what the facts are in answering whether chronic stress makes you sick.  The author concludes that “chronic stress may raise the risk of sickness by fostering resistance to cortisol.”

How does this happen?  The answer:

“Released in greater amounts in times of stress, [the hormone cortisol] provides the body with a burst of energy.  It also helps suppress the body’s immune response to infections like the flu, keeping inflammation responses like coughing, sneezing and fevers in check.  But when levels of cortisol remain elevated, the body may become less sensitive to it, in the same way that elevated insulin levels can lead to insulin resistance.”

Obviously this is not good news for caregivers who often live with chronic stress.

The full blog post is here:

well.blogs.nytimes.com/2012/04/09/really-the-claim-constant-stress-makes-you-sick/

Well Blog
“Really? Constant Stress Makes You Sick”
New York Times
by Anahad O’Connor
April 9, 2012 12:08 PM

Looking at MRIs of autopsy-confirmed PSP and MSA

This is a well-done study out of Queen Square Brain Bank in London.  Many progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) families have donated loved one’s brains to this brain bank, and a great team has been doing research there for a decade or more.

This latest research takes the MRIs from 22 people with autopsy-confirmed PSP, 13 with autopsy-confirmed MSA, 7 with autopsy-confirmed Parkinson’s Disease (PD), 6 with autopsy-confirmed corticobasal degeneration (CBD), and 9 controls.  People, without knowledge of the clinical diagnoses or post-mortem diagnoses, were shown MRIs.  Seventy-two percent of the PSP cases were correctly assessed.  Seventy-six percent of the MSA cases were correctly assessed.  “No PSP case was misclassified as MSA or vice versa.”  The authors note this is about as good as clinical diagnosis.

The authors “suggest a need for imaging techniques sensitive to microstructural abnormalities without regional atrophy.”

When I get a chance, I’ll read the full study….  Or one of you can!  The abstract is copied below.

Robin

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Movement Disorders. 2012 Apr 4.  [Epub ahead of print]

Conventional magnetic resonance imaging in confirmed progressive supranuclear palsy and multiple system atrophy.

Massey LA, Micallef C, Paviour DC, O’Sullivan SS, Ling H, Williams DR, Kallis C, Holton JL, Revesz T, Burn DJ, Yousry T, Lees AJ, Fox NC, Jäger HR.
Sara Koe PSP Research Centre, UCL Institute of Neurology, University College London, London, United Kingdom; Queen Square Brain Bank for Neurological Disorders, UCL Institute of Neurology, University College London, London, United Kingdom; Reta Lila Weston Institute of Neurological Studies, UCL Institute of Neurology, University College London, London, United Kingdom. [email protected].

Abstract
Conventional magnetic resonance imaging (cMRI) is often used to aid the diagnosis of progressive supranuclear palsy (PSP) and multiple system atrophy (MSA), but its ability to predict the histopathological diagnosis has not been systematically studied.

cMRI from 48 neuropathologically confirmed cases, including PSP (n = 22), MSA (n = 13), Parkinson’s disease (PD) (n = 7), and corticobasal degeneration (n = 6), and controls (n = 9) were assessed blinded to clinical details and systematically rated for reported abnormalities. Clinical diagnosis and macroscopic postmortem findings were retrospectively assessed.

Radiological assessment of MRI was correct in 16 of 22 (72.7%) PSP cases and 10 of 13 (76.9%) MSA cases with substantial interrater agreement (Cohen’s kappa 0.708; P < .001); no PSP case was misclassified as MSA or vice versa.

MRI was less sensitive but more specific than clinical diagnosis in PSP and both more sensitive and specific than clinical diagnosis in MSA.

The “hummingbird” and “morning glory” signs were highly specific for PSP, and “the middle cerebellar peduncle sign” and “hot cross bun” for MSA, but sensitivity was lower (up to 68.4%) and characteristic findings may not be present even at autopsy.

cMRI, clinical diagnosis, and macroscopic examination at postmortem have similar sensitivity and specificity in predicting a neuropathological diagnosis. We have validated specific radiological signs in pathologically confirmed PSP and MSA. However, the low sensitivity of these and macroscopic findings at autopsy suggest a need for imaging techniques sensitive to microstructural abnormalities without regional atrophy.

Copyright © 2012 Movement Disorder Society.

PubMed ID#:  22488922  (see pubmed.gov for this abstract only)

Interview with MSA Woman in Vermont

This is a nice interview with Christine Tissot, who has multiple system atrophy (MSA) and lives in Vermont.  Vermont neurologist Dr. Robert Hamill is also interviewed.  The article’s author is a friend of Christine’s.
Robin

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www.vermontwoman.com/articles/0412/tissot.shtml

Multiple Systems Atrophy (MSA): The Story Of Christine Tissot
By Suzanne Gillis
Vermont Woman
April 2012

No one I know had ever heard of MSA. I bet you haven’t either.

Neither had my friend Christine Tissot. Not until she learned of her own diagnosis two years ago. There is no test for MSA, no known cause or risk factors, no remission, no cure.

Diagnosis can only be done symptomatically and is often confused with other neurological diseases such as Parkinson’s and Multiple Sclerosis or ALS (Amyothropic Lateral Sclerosis, or Lou Gehrig’s disease). Treatment of symptoms requires the expertise of dozens of doctors and healthcare workers from different fields.

Multiple System Atrophy is a rare and rapidly progressive neurodegenerative disorder that is associated with the loss of nerve cells in several parts of the brain that affects all body systems we take for granted. It strikes less than five people in 100,000; their average lifespan from onset is less than eight years.

Symptoms occur and systems decline progressively at varying times, either alone, in combination, or in totality. The effects include: loss of balance,  muscle coordination and strength; fainting and dizziness due to sudden severely low blood pressure; speech and swallowing difficulties; sleep problems; impotence; breathing impairment; dry mouth and skin; rigidity; vocal cord paralysis; tremors; and bladder and bowel problems. MSA does not affect memory, intelligence, or cognitive ability.

The disease strikes both men and women in middle age who become totally disabled; it results in death. Clinical definitions and facts do not come close to describing the enormous strain and chaos the disease ravages on the patient, medical providers, caregivers, family and friends. Jobs are lost and families are emotionally stressed and bankrupted. Public awareness is practically nonexistent. Research and funding are scarce.

Christine Tissot, 62, lives with her spouse Jody Crosby in Shelburne, Vermont. She generously consented to be interviewed by Vermont Woman to help educate and bring awareness to the public about MSA; funds are severely needed for research. The interview was conducted in late February at the couple’s home. Christine uses a wheelchair and spoke through a microphone to enhance her voice.

VW:    Christine, you immigrated from Marseille, France, to the U.S. in 1979 with your family, including your children, Antoine and Mathilde, both now married and in their thirties. You also have two wonderful grandchildren.

CT:      True. We moved to Tacoma, Wa., then to Charlotte, Vt. in 1982, when my children were five and eight. We lived there for 28 years.

VW:    Until recently, you worked most of your life as an independent wholesale importer of European fashion footwear. You were also an active skier, kayaker, and hiker. You were living a full and vigorous life and looking forward to retirement. That is, until one beautiful day, four years ago on a back country skiing excursion from Bolton to Stowe, you realized something was terribly wrong.

CT:     I have skied in the Alps since an early age. I was very comfortable with the challenges of the Vermont mountains. That day I fell several times. At first, I thought my new skis were defective. I bought them specifically for this event. I returned them and purchased another pair, but the next time I fell again and again, when I should not have. Then I knew the skis were not the problem, it was my body that was not working right. So I made an appointment with a neurologist in November 2008, following up with another neurologist for a second opinion in July 2009. An MRI of the brain and spine proved nothing. Neither doctor was able to make a diagnosis.

VW:    What did these neurologists think was wrong?

CT:      First they thought perhaps I had MS or Parkinson’s, which I did not. Neither mentioned MSA. However, the MRI did show a slight atrophy of the cerebellum, so one neurologist was convinced the cause of my problems might be from drinking. That was funny because I barely drink alcohol. I think she thought it was because I was French. My symptoms continued to get worse. Finally, in February 2010, I returned to the first neurologist.

VW:    You must have been so frustrated and scared at this point.

CT:      Yes, it was scary. The neurologist was shocked at how quickly my symptoms had progressed. For the first time, he was able to make the tricky diagnosis of MSA. This was difficult because the disease is very rare. I had certainly never heard of it. He told me to go home and look MSA up on the internet and then call someone else for a second opinion.

VW:    Let me get this right! He told you to go home, by yourself, and look MSA up on the internet!

CT:      Yes. I got home and told Jody, who also had never until this moment ever heard of MSA. I went to my office, which is in another building, and Jody went into the house to research MSA. Separately, but at the same time, we googled MSA.

VW:   What an appalling way to find out. This must have been a horrible time for you both.

CT:      It is a day I will never forget, February 8, 2010. Simultaneously, we ran toward one another outside. We were shocked, of course, though somewhat relieved to finally have an answer. Still it was the worst news. We made an appointment with Dr. Hamill, chair of neurology at Fletcher Allen Health Care for a second opinion.

VW:    Please describe your meeting with Dr. Hamill.

CT:      He confirmed the diagnosis and took the time to explain the disease in great detail. He also said I should attend to my affairs as soon as possible and prepare for the worst. We thought we would still have a few good years left to enjoy. But the disease was quite advanced. I now know I had symptoms years ago.

VW:    Really. What do you mean?

CT:      Maybe even nine years ago. I had urinary problems. My gynecologist suggested I might have a neurological problem, maybe MS. That was always in the back of my mind all these years. (Urinary dysfunction is one of the very early signs of MSA.)

VW:    Christine, you have been knowingly living with MSA for just over two years. Yet it went undiagnosed for many years. Would you rather have known you had MSA years ago?

CT:      No. Nothing could have been done. There was no way of knowing. We did the best we could and we had some good years.

VW:    What did you do to prepare for the worst?

CT:      Thankfully, my home in Charlotte sold in two days to a very nice family. I was sad to leave it, but the bedrooms and bathroom were on the second floor and it was not possible to live there. We found the perfect condo here in Shelburne. We love it. It works for us. The natural wooded marsh  and wetland setting is alive with birds, ducks and other animals and the colors of the sky, trees, grasses and water change throughout the day. Nature gives me relief and serenity.

VT:      As a same-sex couple for 13 years, you and Jody were married on May 5, 2010. How did you come to make this decision?

CT:      It just felt right. We had lived happily and separately, but suddenly it felt right to marry. I wanted Jody to be a real widow, not just a girlfriend. Jody is my main caretaker. She makes it possible for me to live at home.

VT:      Does the status as a legally married Vermont couple help when dealing with medical professionals?

CT:      It makes it so much easier on both of us. Before, everyone either assumed or asked if Jody was my caretaker. We were always explaining that she was my partner, but she was so much more. Now we say we are married and that is that.

VT:      Are you surprised that you are easily accepted as a couple?

Ct:       No one blinks an eye. There are so many medical, business and personal decisions to be made every day. Together we make those decisions. When the time comes, Jody, as my spouse, will make them for me.

VT:      How do you manage the financial burden and other paper work?

CT:      I have excellent insurance: disability and long-term insurance policies. Once we were married, I was able to get on Jody’s heath insurance plan. I urge everyone to be sure they have good insurance. You never know if or when you may need to use it, if ever. But if you do, having enough insurance is critical and one less thing to worry about. Insurance gives you access to home caregivers, medical equipment and so many other things you need just to get by.

VW:    What about health proxies and other legal documents?

CT:      Your legal papers must be up to date and clear. An Advanced Health Directive should be registered, with a health proxy, power of attorney and of course, a will. It is best to consult your lawyer to be sure. Don’t put it off.

VW:    So you and Jody made many preparations very soon after your meeting with Dr. Hamill in 2010. Then you traveled to France for the last time?

CT.      We were in France for a month and visited places where I used to live and spent time with family and friends. I wanted to say goodbye.

VW:    When did Atticus come into your lives? (Atticus is a one-year-old Havanese puppy.)

CT:      I gave Atticus to Jody for her birthday as an eight-week-old puppy. He is a joy and makes us laugh every day.

VW:     You mentioned caregivers. What is a typical week like for you?

CT:      MSA has taken a toll on every system in my body. We are lucky to have a wonderful palliative care doctor,  Zail Berry, who comes to the house and coordinates all my medical needs. We much appreciate the services of the Visiting Nurses Association, who help with the nursing care, physical and occupational therapy. We have a wonderful hospice volunteer, who gives me a massage once a week. Home Instead, with their skilled caregivers and flexible scheduling, give Jody respite as needed, which allows us to live together at home. Friends have been wonderful in so many ways, from helping us move, to sharing meals, sending flowers and cards, giving puppy care, music, phone calls and visits. One friend comes every Monday for the day, and another for several mornings a week. My children, who live far away, visit and call as often as they can. We could not possibly do this without all the help, love and support from our families and friends.

Jody is retired so she is with me most of the time. The nights are difficult. I sleep sitting up in a hospital bed. Because I cannot move, I need to be turned regularly throughout the night. Caring for me is difficult physically and emotionally and it is intimate. I have a supra pubic catheter, which must be emptied and cleaned two times a day. My wound must be cleaned daily. I am dependant for most everything. I still have use of one arm and hand, but my coordination is poor, so with great difficulty I can eat and use my iPad. But just the smallest thing, like a pen dropping, or just being an inch away, and I cannot reach. It takes Jody two hours every morning to get me up, into the bathroom, showered, dressed and into my wheelchair. I now need someone to be with me all the time.

VW:    How has MSA affected your relationship?

CT:      Emotionally, it has brought us closer together than we ever imagined. However, the physical and emotional stress has been difficult. For months, Jody tried to do everything herself. It takes a lot to ask for help and have people come into your home. Finally, she was so stressed, sometimes to the point of tears. So we arranged for professional care and reached out to our friends for support. Together they have made a big difference in our lives and they give Jody much needed breaks so she can better run our household and has time to take care of her own needs.
.
VW:    What are your fears?

CT:      Every day I worry what will be next to go. I am worried about becoming totally immobile, when I will not be able to move or speak. I intend to stop eating and drinking before I get too weak and before I lose my will and still have a bit of control left. I do not want to use up all my financial resources that living longer will require and exhaust the support around me. I take my lessons from my pets and animals. They know when the end is near and they disappear into the woods, or we intervene to help the dying process along.

VW:    When will you decide to stop eating and drinking?  How will you know it’s time?

CT:      Since there is no hope for improvement, when I am in constant pain and miserable; when I can no longer move, or speak or control my bowels, then I will know. It gives me comfort when I have so little control, that the one thing left that I can control is eating and drinking. I have aged 20 years in six months, and feel at the same time like I have gone back to infancy. I think of death as a relief.

VW:   The ending of life is so difficult for most people to think or talk about.

CT:      Yes. Our culture has difficulty contemplating death.
Life is seldom easy. I am not surprised that this happened to me. Perhaps I am more prepared than others. I accept my destiny. I am not angry. I am not depressed. I am sad. I would have liked to have had more time. I am a grain of sand in the universe, and in that sense what happens to me is not important. What happens to me is important to me. That is why when the time comes, I hope I will have the strength and will to stop eating and drinking. The hardest part will be the first few days. It may take two or three weeks. This is a natural way to die. Pain will be eased by medication. I know I have to make this decision sooner rather than later.

VW:    What is your philosophy about life?

CT:      Live fully while you can. Live in the moment. Do not worry about things you cannot change. There is no escaping death. It is just a matter of time for each and every one of us.

VW:    Thank you, Christine. Do you want to add anything more?

CT:      I have had a rich and interesting life. Jody has brought so much joy into my life.
I have two wonderful children and grandchildren I love.

In mid-February, a celebration of Christine’s life was hosted by Jody and Christine for thirty friends, some of whom have known each other for nearly 40 years. Together with Christine, we have shared many joys and some heartache. We are all old enough to have lost loved ones. Usually we celebrate these losses after they are gone. On this occasion, we were able to share stories and memories with Christine present. Mary Provencher sang a song she wrote with Christine, called “Remember,” a beautiful gift from Christine to her friends.

There was not a dry eye in the room.

MSA from a Neurologist’s Perspective

According to Dr. Robert Hamill, “MSA is rare, affecting about 20 to 25 people in our area.” Hamill is Chair of the Department of Neurology at the University of Vermont College of Medicine and Fletcher Allen Health Care in Burlington, Vt.

Describing the experience of his patient Christine Tissot, Hamill said, “MSA is not always recognized unless a patient is referred to a neurologist, as many physicians are unaware of the disorder and patients are called atypical Parkinson’s Disease patients. Thus the prevalence of the MSA disorder may be higher than we know. UVM/FAHC, which serves 750,000 citizens in Vt. and N.H., follows about 15 patients with MSA; others are seen at Dartmouth or Albany.”

The cause of MSA is unknown, but thought to be an abnormality in the protein synuclein. “PD is also a synucleinopathy,” said Dr. Hamill, “and thus MSA and PD appear to be linked to some degree…It is hoped that research findings from studies in PD will provide insights into the cause(s) of MSA.”

Although much is known about PD and related neurological disorders, Dr. Hamill said, “Treatments directed at possible causes [of MSA] have been and are continuing to be tried, but I am unaware that anything has worked so far.
“Research funding in neurological disorders across the board is a huge issue. Limited funding sources are from the National Institutes for Health and the federal budget.  Only about 10 to 15 percent of approved grants are actually funded. The focus is on diseases that affect larger populations. Currently, UVM/FAHC is involved in research projects funded by NIH to slow PD; positive results may turn out to be helpful for MSA patients.”

Dr. Hamill went on to note that, “Vanderbilt University, The Mayo Clinic and New York University are currently involved
in clinical care and research directly related to MSA. There are about 130 ongoing clinical trials aimed at improving the symptom complex of the disorder.

“Over thirty years of practicing neurology, I have been struck and awed by the strength of the human spirit when faced with the daunting challenges of the nervous system, the organ system that truly manages our lives. Christine faced MSA head on, has stayed positive and engaged, has never wavered…a remarkable person. I so wish we could do more.”

Though information is sometimes restricted, a resource for locating trials is www.clinicaltrials.gov. Other helpful links include www.msaawareness.org and www.mayoclinic.org/msa.

Powerful Words

I have been one of Christine’s many friends, who have been helping her through this transition. In my profession as a hospice nurse, I have cared for several others with similar neurological diseases, although not MSA. As her friend, it is very hard to watch Christine lose her bodily functions each and every day. I have learned so much from both Christine and Jody about determination, courage and resiliency. In that sense, Christine has given me so much more than I feel I have been able to give her. Christine’s son Antoine recently told me that his mother is his hero, who has been teaching him all his life and continues to do so in her dying process. I was deeply moved by his words, so powerful from a son, as so many caregivers are women.

Mary Loney
VNA hospice nurse and friend

“The Caregiving Wife’s Handbook” – coping strategies

This New York Times article is about the new book “The Caregiving Wife’s Handbook” by Dr. Diana Denholm, a psychotherapist who was the caregiver to her husband for over a decade.

The book lists 50 dos and don’ts to make caregiving easier.  The author of the NYT article provides 16 of the 50 at the end of her article.

Here are a few excerpts from the NYT article:

* “It is no surprise when serious illness or severe pain results in feelings of anger, helplessness and depression, all the more so when the illness is terminal and the afflicted person loses his sense of self. After many years as ‘the man of the house,’ the sick husband is once again a child who must be cared for, often by the very person he signed on to protect.”

* “In her book, Dr. Denholm discusses a series of coping strategies that she developed with her husband during his long illness. The most important of these is to adopt communication tools that avoid red flags, accusations and self-pity, and instead “create expectations, agreements and understandings, including some that may involve agreeing to disagree,” she said.”

* “Never start with, ‘’We need to talk.’’ … Always use an ‘”I”’ statement “­I need,’” “‘I want,” “‘’I’d like to’.”

* “One tool Dr. Denholm found to be especially helpful is to create written understandings, some of which may need to be modified as circumstances change. The understandings might involve finances, individual responsibilities or issues to be avoided.”

* “For example, the waitress, whose husband refused to review finances with her, came to realize it was pointless to keep asking. Instead, she ended the screaming and arguing by going to the bank, the Social Security office, the Veterans Affairs office and even the Legal Aid Society to determine her rights regarding what she and her husband owned.”

Here’s a link to the full article:

well.blogs.nytimes.com/2012/04/09/caregiving-as-a-roller-coaster-ride-from-hell/#more-74693

The Well Blog
Caregiving as a ‘Roller-Coaster Ride From Hell’
The New York Times
By Jane E. Brody, Columnist
April 9, 2012, 3:09 pm