Category Archives: Caregiving – General

“Tools for Meal Time” – good article on dysphagia

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The Fall 2008 CurePSP Magazine (psp.org) has a good article on swallowing problems that may be of interest to everyone — not just those dealing with PSP (progressive supranuclear palsy).

I’ve copied the full text below.  At some point, the newsletter will be available on psp.org; I received it in the mail this week.  You can sign up online at psp.org to receive a copy of future newsletters in the mail.

Robin

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Tools for Meal Time
Laura Purcell Verdun, MA, CCC
Speech-Language Pathologist
Otolaryngology Associates, PC
Fairfax, VA

CurePSP Magazine
Fall 2008 Issue

Difficulty swallowing, or dysphagia, is commonly associated with many neurodegenerative diseases, specifically PSP or CBD.  In fact, difficulty swallowing may be one of the early symptoms of this disorder.  Given that complications related to difficulty swallowing are one of the most common causes of mortality, attention needs to be directed towards optimizing the ease and safety of swallowing.

What changes in eating and swallowing should we look for?

There are actually fairly typical behavioral changes with eating in PSP and CBD.  These often include difficulty looking down at the plate, mouth stuffing and rapid drinking, difficulty with self-feeding because of tremor or stiffness, restricted head and neck posture, and occasional difficulty opening the mouth.  These behaviors can make it more difficult to swallow and often contribute to decompensation of the swallowing mechanism resulting in coughing and choking.  Caregivers need to look out for these behaviors, because the person with PSP or CBD often is not aware of these changes.

What are some tools that we can use to help make meal times more successful?

1.  Use a suction machine, toothette swab (a pink or green sponge on a lollipop-type stick), or mouth rinse prior to meals to clear out secretions which may interfere with ease of swallowing.

2.  A firm chair with arms to support sitting upright for proper swallowing alignment is most ideal.

3.  Keep the plate in the line of vision, by placing the plate on top of a book or something similar, or substituting reading glasses for bifocals.

4.  Try experimenting with different plates and utensils.  Plates with higher edges and bottom grips enhance independence with eating.  Downsize eating utensils to limit how much food is being put in per mouthful.

5.  Experiment with different cups and glasses.  Some are just easier to drink out of than others, depending on a handle or even the thickness and shape of the lip.  Straws are generally not preferred because it results in acceleration of the liquid into the throat before it’s ready.

6.  Use a blender or food processor.  The goal is not to eliminate foods necessarily, but consider how they could be prepared difficultly to enhance ease and safety of swallowing.  Multiple consistency items such as fruit cocktail and broth based soups generally should be avoided, so blend them.

7.  A teaspoon can be used to restrict the amount of liquid placed in the mouth for each swallow.

Though clearly not a comprehensive list, here are some specific products that may be of benefit at meal times.  Look for other products available on these web sites as well:

Flexi-Cut Cup allows for drinking without extending the head and neck backwards, 3 sizes available (800/225-2610, www.alimed.com).

Provale Cup restricts the volume of liquid allowed per swallow (800/225-2610, www.alimed.com).

Maroon Spoons have a narrow shallow bowl to restrict how much food is placed on the spoon and in the mouth, come in 2 sizes (800/897-3202, www.proedinc.com). [Robin’s note:  that’s the correct website!  You can also find these spoons at AliMed.]

Less Mess Spoon is designed with holes to keep food on the spoon, or drain away liquid from a multiple consistency food item (800/257-5376, www.theraproducts.com).

Scooper Plate with Non-Skid Base has a high curve to help scoop food onto a utensil (913/390-0247, www.bindependent.com).

Skidtrol Non-Skid Bowl is a melamine bowl with non-skid base (972/628-7600, www.maddak.com).

Are there any cookbooks that may give us some ideas regarding meal preparation for people with trouble swallowing?

Achilles E and Levin T.  The Dysphagia Cookbook.  2003.  Cumberland House Publishing.

MEALS for Easy Swallowing.  2005.  Muscular Dystrophy Association Publications.  [Robin’s note:  the correct link to this book is www.als-mda.org/publications/meals/ The full contents of this book, including the recipes, are available online.]

Weihofen D, Robbins J, Sullivan P.  Easy-to-Swallow Easy-to-Chew Cookbook.  2002.  John Wiley & Sons, Inc.

Wilson JR and Piper MA.  I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders.  2003.  Hunter House, Inc.

Woodruff S and Gilbert-Henderson L.  Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties.  2007.  Square One Publishers.

If you have any concerns regarding swallowing, be sure to discuss this further with your neurologist and speech pathologist.

 

Resources and Tips from Occupational Therapist

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This post is of general interest to both caregivers and those with neurological disorders.

PPSG (Parkinson’s Patients Support Groups, ppsg.org) held its annual “Caregiver and Volunteer Appreciation Luncheon” in September 2008 in Fremont.  One of the speakers wrote a summary of her luncheon presentation — Julie Groves, an occupational therapist.  Julie runs an outfit called Therapy in Your Home, therapyinyourhome.net. Therapy in Your Home provides OT, PT, and ST services in San Mateo, Santa Clara, and Santa Cruz counties at $100-125/visit.  You can also gain access to Julie Groves, as an occupational therapist, through CareSouth Home Health (408/871-9860) if you are in Santa Clara County (and have Medicare home health benefits).

Julie’s summary of her September presentation was published in the latest edition of the PPSG Newsletter, available online.  I’ve copied the text below.

I especially liked this comment:  “Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding.”

And the Resources section is terrific.

I’ve copied the summary below.

Robin

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www.ppsg.org/PPSG_2/Docs/December%202008.pdf  (the summary starts on page 3)

Volunteers Appreciation Luncheon: OT says “Thank You!”
A Speech Summary from Julie Groves, OT
PPSG Newsletter
November/December 2008

– I spoke of my love for my profession of Occupational Therapy with an emphasis on DOING, ENGAGING, CHALLENGING, ADAPTING, COMPENSATING, and making the task ENJOYABLE. Those words describe OT as well as what you do. I spoke of the neuro-research that supports why DOING at the right level of challenge is effective. As Dr. Liang also reiterated, since 1998 we know that brain cells can re-grow, grow more connections and have more efficient synapses. Although some cells may be damaged by PD, you are never too old to learn new techniques. And you, volunteers, might want to go back to school to be an OT!

We discussed specifically:

– Dexterity and using large arm movements: Using art work, washing windows, shooting the rubber band from the morning paper.

– Rhythm: Clapping, drumming, listening and responding to music, applying these concepts to mobility, and dancing (in a wheel chair, behind a wheelchair, both of you holding a walker, rocking arm in arm), and the PD Tango Class at Avenidas Senior Center in Palo Alto.

– Facial exercise and swallow skills: Laugh with the funny faces, use your hands to encourage those muscles to move, pause long enough for a response, sing, and yell.  Make poetry with the KKK and GGG sounds which help the swallow muscles.

– Breathing: Again, yell and sing for fun! Use your hands on the rib cage, encourage breathing into your hands and help expel the air with a firm pressure. Touch almost always makes an activity more meaningful and enjoyable. And while you are at it, be sure to breath out long and slowly yourself!

– Move more: From the audience came discussions of Tai Chi and of the Wii, both known to be beneficial for people with PD. The Parkinson’s Institute is planning training in use of the Wii; call to get on their list. The Wii is the ultimate biofeedback machine, encourages challenge, participation, adaptation for different levels of participation and skill. The grandkids or friends or significant others can play it with you. We discussed Wii sports, Wii dance and Wii Fit. Wii is like your grandkids’ Xbox but interactive. It’s not cheap, but the benefits may make it worth it. Hook up the box to your TV and hold the wireless controller. The TV/box senses how you move (swing a bat, change your balance, launch a bowling ball) and shows the result on the TV screen, giving you immediate feedback and you just WANT to do it again better.

– Finally: take care of yourself. Besides all the usual ways, we discussed:
* Anticipate change, prepare
* Accept help, ask for help
* Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding
* Be ready to say “no.” Look ahead; will you be able to do this next year? What will you do on a bad day? Adapt, before you need to, before you get worn down and grumpy. Think through your options, talk about them with your support system.

A question was raised later in the program about why the healthcare community doesn’t address all the other symptoms of PD: constipation, lack of concentration, stiffness and fatigue, depression. Research shows healthcare providers are not comfortable or skilled at talking about these subjects. If you can bring up the subject it is more likely to be discussed, and we are more likely to learn more about how PD is impacting you.

Some resources that were requested:

Places to get equipment and ideas:
* Abledata.com, 1-800-227-0216: ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. Although ABLEDATA does not sell any products, they can help you locate the companies that do. Hint: call and ask, don’t just use the online version.
* SammonsPreston.com
* Ncmedical.com
* Alimed.com

Resources about attending to all the other needs of the person with PD:
* “My Mother, Your Mother” by Dennis McCullough.  “Slow Medicine” advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions–an approach that improves the quality of elders’ extended late lives without bankrupting their families financially or emotionally
* Handbook for Mortals by Diane Lynn, available in full online
* CodaAlliance.org and the Go Wish Cards for facilitating difficult conversations.

Finally, consider asking for Occupational and Physical therapy each time there is a change of condition. Your insurance probably covers therapy, and it is available through Outpatient or, if you are homebound, through Home Health. In some cases you might need to pay privately for therapy at $80 to $130 an hour. Be sure to explain to the therapist what the problems are that you are experiencing and ask for (demand?) practical solutions, not just more exercises. Help the therapist understand your individual needs.

Thank you, again.
Julie Groves, Therapy in Your Home — OT, PT, ST

 

“Handbook for Mortals”

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This publication — “Handbook for Mortals” — was recently recommended to me. It is available for free online at: 

http://www.growthhouse.org/educate/flash/mortals/layouts/frameset1.html


Or you can purchase it from amazon.com for about $15. 

The chapter on “Controlling Pain” is particularly good. This topic is covered from the point of view of end-of-life pain but of course many people in our group experience pain and are not at the end of life. 

Advance care directives and related topics about forgoing medical treatment are discussed*. 

Happy Thanksgiving! 

Robin 

* The table of contents includes: 

1. Living With Serious Illness 
2. Enduring And Changing 
3. Finding Meaning 
4. Helping Family Make Decisions And Give Care 
5. Getting The Help You Need 
6. Talking With Your Doctor 
7. Controlling Pain 
Types of pain 
Choosing the right pain medicine 
Different ways to take pain medicine 
Doses of pain medicine 
A few rules about pain medicine 
How often to take pain medicine 
Fear of addiction 
Side effects of pain medication 
More medications that relieve pain 
8. Managing Other Symptoms 
9. Learning About Specific Illnesses 
10. Planning Ahead 
11. Forgoing Medical Treatment 
Thinking about the issues 
Stopping treatment 
Time-limited trials 
When food seems like love 
The benefits of dehydration at the end of life 
Tube feeding and the dementia patient 
Artificial feeding and the permanently unconscious patient 
Choosing to stop eating and drinking 
Decisions about ventilators 
Decisions about resuscitation 
The many meanings of “DNR” 
Other decisions to forgo treatment 
12. Hastening Death 
13. Coping With Events Near Death 
14. The Dying Of Children 
15. Dying Suddenly 
16. Enduring Loss

How MDs complete death certificates and “old age” not a cause of death

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Given our efforts with brain donation, we are often asked by families how they can get a certain “cause of death” listed on the death certificate (DC) and what that means.

Since a brain autopsy or body autopsy cannot be done in time for the death certificate, what is placed on the DC is largely up to the hospice MD, MD in the hospital, MD who most recently treated the patient, or coroner.  Of course families often can influence this.  And, once a brain autopsy report has been received, families can petition to have the DC modified to reflect the confirmed neurological diagnosis.  (There can be a fee associated with this.)

The topic of “cause of death” is raised in a recent blog post in the New York Times.  The author is frustrated that “old age” cannot be listed as a cause of death on a DC.  The author states:

Instead, every death must be attributed to a single disease, which is the immediate cause of death. A second disease may be cited as the intermediate cause, and a third as the underlying condition. Even in situations “when a number of conditions or multiple organ/system failure resulted in death,” the C.D.C. instructs that “the physician, medical examiner or coroner should choose…a clear and distinct etiological sequence,” a “chain of morbid events.”

The author believes that this “biomedical world view” distorts the reality that people do die of old age!

Here’s a link to the article:

newoldage.blogs.nytimes.com/2008/10/23/the-immediate-cause-of-death/

The Immediate Cause of Death
New York Times
By Jane Gross
October 23, 2008 6:12 am

Robin

“Care for the Family Caregiver” brochure

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The National Alliance for Caregiving published a terrific brochure titled “Care for the Family Caregiver” in 2005.  Here’s a link to it:

(Editor’s note: the link is no longer active)

CARE for the FAMILY CAREGIVER: A Place to Start
National Alliance for Caregiving
2005

The best sections are:

“Helpful Tips for Family Caregivers: A Place to Start,” page 16  (page 19 of PDF)

“Caregiver Training,” page 18  (page 21 of PDF)

“Caregiver Health: Taking Care of Yourself,” page 25  (page 28 of PDF)

“Caregiver Resource Guide Where to turn for help,” page 35  (page 38 of PDF)

Robin