caregivers

Compassion Fatigue Awareness Project

October 1, 2017 Caregivers, Life

Studies confirm that caregivers play host to a high level of compassion fatigue. Day in, day out, workers struggle to function in caregiving environments that constantly present heart wrenching, emotional challenges. Affecting positive change in society, a mission so vital to those passionate about caring for others, is perceived as elusive, if not impossible. This painful reality, coupled with first-hand knowledge of society’s flagrant disregard for the safety and well being of the feeble and frail, takes its toll on everyone from full time employees to part time volunteers. Eventually, negative attitudes prevail.

Compassion Fatigue symptoms are normal displays of chronic stress resulting from the care giving work we choose to do. Leading traumatologist Eric Gentry suggests that people who are attracted to care giving often enter the field already compassion fatigued. A strong identification with helpless, suffering, or traumatized people or animals is possibly the motive. It is common for such people to hail from a tradition of what Gentry labels: other-directed care giving. Simply put, these are people who were taught at an early age to care for the needs of others before caring for their own needs. Authentic, ongoing self-care practices are absent from their lives.

If you sense that you are suffering from compassion fatigue, chances are excellent that you are. Your path to wellness begins with one small step: awareness. A heightened awareness can lead to insights regarding past traumas and painful situations that are being relived over and over within the confines of your symptoms and behaviors. With the appropriate information and support, you can embark on a journey of discovery, healing past traumas and pain that currently serve as obstacles to a healthy, happier lifestyle.

Many resources are available to help you recognize the causes and symptoms of compassion fatigue. Healing begins by employing such simple practices as regular exercise, healthy eating habits, enjoyable social activities, journaling, and restful sleep. Hopefully, the information on compassionfatigue.org will be of use to you and help you jump-start your process.

Accepting the presence of compassion fatigue in your life only serves to validate the fact that you are a deeply caring individual. Somewhere along your healing path, the truth will present itself: You don’t have to make a choice. It is possible to practice healthy, ongoing self-care while successfully continuing to care for others.

Article from compassionfatigue.org.

Legal Tools for Caregivers

August 1, 2017 Caregivers, Education, Life

If you are caring for a loved one, there are certain legal strategies and tools that you need to utilize to ensure that your loved one gets the best quality of care possible and has the highest quality of life. The tools and strategies come in two forms, the basics that everybody needs and then more advanced planning strategies.

There are certain basics that every caregiver needs to have in place for their loved one. Those basics include things like financial powers of attorney, medical powers of attorney, and personal care plans it is important to work with a certified elder law attorney to ensure that you have these documents in place, because these are the key tools that will allow you to provide and care for your loved one.

The first of the basic tools is a financial power of attorney. The financial power of attorney is a document that allows you to make financial decisions for your loved ones. For example, the financial power of attorney would allow you to pay the bills, work with the bank, move money around to protect against long-term care costs. The financial power of attorney is probably the most important document when it comes to caring for a loved one. It is not a document to be treated lightly or to skip over.

Not all financial powers of attorney are created equal. Many financial powers of attorney put limitations on what you can and cannot do as a POA. In fact, many of the financial powers of attorney actually put handcuffs on the agent, in fact not allowing them to do the things they may need to do when caring for a loved one. For example, many financial powers of attorney do not allow you to create an asset protection trust for a loved one. That is why it is important to work with a certified elder law attorney (CELA) when crafting a financial power of attorney.

The next key tool when caring for a loved one is a medical power of attorney. These may go by different names including patient advocate designation, advanced directive, or living will. What this document does is gives the ability to the person you’ve named to be able to make medical decisions for you, including the ability to remove you from life support. The defaulted in many states is that if you are in a vegetative state you are to remain that way unless there is some clear, written, evidence to the contrary. That is why having a medical power of attorney that includes the ability to be removed from life support is important. Typically, this is the document that doctors and hospitals will ask for.

Now one of the basic documents the many people do not have is a personal care plan. A personal care plan is a document that gives instructions to the financial and medical power of attorney on how best to care for you. The provides guidelines on what type of care do you want to receive, for example do on receive care at home or would you prefer to be in an assisted living. Another example would be what type of food do enjoy or what type of television programming would you want to watch. Now this document is not set things in stone, but it does provide a good guideline for your caregivers, whether those caregivers or family or professional caregivers.

Now that the basic documents are in place, now we need to talk about some advanced planning tools such as personal care contracts and asset protection trusts. But, before those are discussed, it is important to understand some governmental programs that are available to help pay for long-term care costs. There are two very important governmental programs. The first is Medicaid, which in many states can help pay for nursing home costs. However, Medicaid has a $2000 asset limit for single individual as well as a five-year look back period. The second governmental program is the VA benefit which can help pay for home care as well as assisted living. The VA benefit also has an asset test where, typically, if you have more than $30-$60,000 of countable assets you are not going to qualify. So, with these two governmental programs the next tools that will be discussed help us qualify for those governmental programs. They are not always necessary, but they can be helpful in qualification.

An asset protection trust is a great way to protect assets from the devastating cost of long-term care so the governmental benefits such as the VA benefit or Medicaid can help pay the cost of care and then the assets in the trust can be used to pay for additional services. Asset protection trusts will differ depending on the governmental program that they are set up to qualify for. For example, an asset protection trust set up to qualify for the VA benefit will have different rules and regulations around it then and asset protection trust set up specifically to qualify for Medicaid. That said typically a VA asset protection trust will also start the five-year look back. For Medicaid. So, a VA trust also will help you get qualified for Medicaid.

in addition to having an asset protection trust, it also may be important to have a personal care contract if you are providing care for a loved one because by you providing care to your loved one may be entitled to the VA benefit if they were veteran or surviving spouse. One of the qualifications for the VA benefit is long-term care costs. By setting up a personal care contract and having the veteran or surviving spouse pay a family member under the personal care contract, that could constitute long-term care costs for purposes of the VA benefit. In other words, if daughter was providing care for mom was a surviving spouse, mom could pay daughter under a personal care contract and now qualified for the VA benefit, which could pay mom an additional $1153 per month. Another important piece of the personal care contract is it if it’s set up properly the money that mom moves to daughter would not be a divestment under Medicaid’s five-year look back period.

Caring for a loved one can be confusing and frightening. It is important to use the right legal tools to make the process as easy as possible. Those legal tools include things like personal care plans, powers of attorney, asset protection trusts, and personal care contracts. It is important to work with a certified elder law attorney (CELA) to set up these documents and to make sure that you receive as much assistance from the governmental programs such as Medicaid and the VA benefit as possible.

Article from Caregiver.com

Parkinson’s and malnutrition: what are the risks and how do you prevent it?

June 1, 2017 Caregivers, Education, Life

Parkinson’s is a complicated condition and while many people with Parkinson’s live a long and healthy life, this is not the case for everyone. A recent study found that possibly as many as 60% of people with Parkinson’s are at increased risk for malnutrition.¹ “Increased risk” doesn’t mean that 60% of people with Parkinson’s will develop malnutrition, it just means that there is a higher possibility of malnutrition – but it is a good idea to be aware of all its possible causes, so that you can minimise the risk.

The risks and how to minimise them

Below are descriptions of some common nutrition-related concerns that may occur as a result of Parkinson’s, followed by suggestions that could help to resolve the problems.

Sense of smell
One of the first symptoms of Parkinson’s can be loss of the sense of smell, a sense that is necessary in order to taste food. While lack of taste and smell doesn’t always affect appetite, it can become a factor.

Suggestions: Choose favourite or especially desirable foods. Focus on flavour intensity – lemon, garlic, soy sauce, cinnamon, cloves, nutmeg, herbs; and “mouthfeel” – foods that are crunchy, creamy, chewy or have other appealing textures that make them more agreeable when scent and flavour are lacking.

Feeling nauseous
Medications used to treat Parkinson’s often cause nausea.

Suggestion: Ginger is very effective at counteracting nausea. Keep some fresh ginger in the freezer and use it to make ginger tea, or chew a slice of ginger. Keep a container of crystallised ginger handy, to take while on errands or travelling. Even powdered ginger can be used to make tea.

Medication regimes
Medications may cause loss of appetite.

Suggestion: Discuss this with your physician. If medication-induced, it may be possible to try a different medication.

Low mood
Depression is common among people with Parkinson’s and can affect willingness to eat.

Suggestion: Discuss this with your physician. Depression can be due to deficiency of B vitamins, vitamin D, omega-3 fatty acids, or other nutrients – a blood test will show whether this is the case and, if so, supplements should help. In some cases, depression can be alleviated by attending regular counselling sessions, however, some people may require antidepressant medication.

Late-stage Parkinson’s
The stage of Parkinson’s can be a factor, because as it progresses, symptoms often become more severe. In addition, motor fluctuations are more likely to occur in later-stage Parkinson’s. ‘Off’-time, dystonia, and dyskinesia can make it difficult both to eat, and to time medications and meals.

Suggestion: Ask your doctor about a longer-lasting medication, such as Stalevo, or Rytary, or a pump, so that ‘off’ time is reduced and the timing of medications and meals is more regulated closely.

Calorie deficit
Tremor and dyskinesia can burn extra calories.

Suggestions: If using levodopa, divide the day’s protein needs between morning, midday, and evening meals, taking levodopa about 30 minutes before each meal. In between meals, eat small, non-protein or low-protein snacks, such as fruits and juices, whole-grain crackers or biscuits, tomato or vegetable soup. These add extra calories without blocking levodopa absorption.

Swallowing and choking issues
Swallowing problems increase fear and risk of choking.

Suggestions: Ask your doctor for a referral to a speech pathologist, who can evaluate your swallowing function, and determine whether you are at risk for choking. If so, the therapist can demonstrate safe swallowing techniques, and recommend chopped, puréed, or otherwise altered foods and liquids. You should also be referred to a dietitian, who can assess your needs and ensure you are getting enough protein and other nutrients.

Motor problems in hands
Rigidity and loss of manual dexterity makes it hard to manage eating utensils.

Suggestion: Ask your doctor for a referral to an occupational therapist, who can recommend specially designed plates, bowls, drinkware, and eating utensils that are easier to manage.

Slowed eating
Chewing and swallowing become tiring, cause slowed eating and inability to finish meals. It may take several hours to finish one meal, so the person is unable to consume enough calories during a day to maintain health.

Suggestion: Choose foods that require little chewing. Include nutrient-rich blended smoothies, minced, mashed or pureed meats, fish, vegetables and fruits such as meatloaf, applesauce, mashed peas, potatoes, carrots, or baby foods. If this is insufficient, ask your doctor about placement of a feeding tube. In many cases, individuals can still eat and enjoy food by mouth; but the feeding tube ensures sufficient fluids to prevent dehydration, and enough protein, vitamins, and minerals for complete nutrition.

Seeking helpFor some people, Parkinson’s may present barriers to good nutrition. These can be difficult to deal with. Being aware of such possibilities is important, so that you can prepare as needed. That includes close communication with your neurologist, and the help of specialised health professionals, for their advice and support. With preparation and an experienced healthcare team, you can overcome, – or even prevent – common causes of malnutrition and related illness.

References
¹Tomic S1, Pekic V2, Popijac Z3, Pucic T3, Petek M2, Kuric TG2, Misevic S3, Kramaric RP2. What increases the risk of malnutrition in Parkinson’s disease? J Neurol Sci. 2017 Apr 15;375:235-238.

Kathrynne Holden, a registered dietitian, has specialised in Parkinson’s disease nutrition for over 20 years. She has contributed to two physicians’ manuals on Parkinson’s, written the booklet ‘Nutrition Matters’ for the NPF (with some of her work for them archived here). Now retired, she maintains a website on Parkinson’s topics.

http://parkinsonslife.eu/parkinsons-and-malnutrition-risks-and-prevention/

31st Annual Parkinson Disease Symposium | June 23, 2017

June 1, 2017 Awareness, Caregivers, Community Outreach, Education, Life, Research

WPA will host its 31^st Annual Parkinson Disease Symposium on Friday, June 23, 2017 at Country Springs Hotel & Conference Center in Pewaukee, Wisconsin.

Beginning at 8:00am, attendees can check in and visit with vendors at the Resource Fair where health and community agencies will display valuable information throughout the day. Beginning at 9:00am, the first main session will be “Understanding Parkinson Disease from a Scientific Perspective”, presented by Giuseppe P. Cortese, PhD, Postdoctoral Research Associate, Department of Neurology, University of Wisconsin-Madison. The morning breakout sessions will follow Dr. Cortese’s interactive presentation, and participants will choose from three options: “Caregivers: Being prepared for an emergency”, “Grieving ‘life as we have known it’”, and a Panel on PD exercise programs.

During lunch, the resource fair will again be open for participants. After lunch, the afternoon breakout sessions will include “Are you caring too much and laughing too little?”, “Causes and prevention of falls” and “Exercise: A targeted attack on Parkinson’s.” The closing session for all attendees will be “Nutrition for Parkinson Disease” presented by Michelle McDonagh, RD, CD, Froedtert & The Medical College of Wisconsin. The Symposium will conclude by 3:30pm.

The registration fee is $30 per person and includes educational materials, continental breakfast, and lunch. To register, CLICK HERE or call our office at 414-312-6990. Registration is required and must be received by Wednesday, June 14.

The event is sponsored by Abbvie, Medtronic and US WorldMeds.

How to Cook for a Loved One with Dysphagia

May 1, 2017 Caregivers, Education, Life

The simple act of eating is anything but for those who experience dysphagia, the medical term for difficulties swallowing or eating. Millions of Americans have the condition, especially aging adults: The U.S. Department of Health suggests that about 15% of the elderly population experiences some form of dysphagia. And for those who care for elderly adults, it may be difficult to find equally nutritious and appetizing food that can be consumed.

Caregivers may feel alone or discouraged when it comes to finding and cooking dysphagia-friendly recipes. Often, they will find themselves resorting to feeding their loved ones soft, tasteless food because it is the only thing they can swallow.

But, this is not the case, and students and faculty at Speech@NYU, the online master’s in speech pathology from NYU Steinhardt, wanted to change this mindset and provide tools so everyone can take dysphagia head on in the kitchen with “Dining with Dysphagia: A Cookbook.”

The cookbook, which includes eight recipes that elevate pureed or “mushy” food to a higher standard, focuses on all of the values that are important to those who are supporting people with dysphagia: nutrition, texture and taste. Not only is this cookbook meant to be a resource, but also the catalyst to help start a larger conversation about changing the narrative of dysphagia. In fact, this cookbook all started with the NYU Steinhardt Iron Chef Dysphagia Challenge competition, during which contestants prepared food based on recipes that are easy-to-follow and easy-to-swallow. The cookbook is a result of the event and this year’s dishes include rosemary mashed potatoes, pumpkin soup and vegetarian squash chili, just to name a few.

Here are a few tips to keep in mind when cooking for someone with dysphagia:

Find out their favorite recipes: Talk to your loved one and determine what their food preferences are so you can create a dysphagia-friendly version
Focus on diversity: Mix it up by including different ingredients and balancing tastes
Make it a family affair: If you are worried that someone will be embarrassed or left out because they are eating “different” foods unlike the rest of the family or group, try recipes that everyone can enjoy to make the meal experience more inclusive
Get creative: Need more inspiration for new recipes? Consider doing recipe “swaps” with other friends or colleagues, or experiment on your own
Have a candid conversation: Do not be afraid to talk openly about dysphagia; Showing your support and how understanding you are of their condition is critical

It is important to remember that food should not only nourish the body, but also the soul. No one should ever assume they have to resort to simple, “mushy” food just because it is easily consumed. There are myriad options to create delicious recipes that your loved one will enjoy, and the cookbook is just one example of this.

If you would like to learn more about dysphagia, schedule an appointment with your loved one’s general practitioner. A speech-language pathologist will also be able to discuss the condition in greater detail.

To learn more about the “Dining with Dysphagia” cookbook visit https://speech.steinhardt.nyu.edu/dysphagia-cookbook/about/.
By Erin Embry MPA/MS CCC-SLP

With a dual degree in both Communication Sciences and Disorders and Health Policy and Management, Erin Embry’s approach to teaching and leadership promotes interdisciplinary collaboration at all levels of academic, clinical and professional training. She is the Director of the Speech@NYU online MS program in Communicative Sciences and Disorders and the graduate student academic advisor.

Embry teaches courses related to the clinical process, swallowing disorders, and professional issues. She is actively involved in department and school-wide curriculum development with a focus on cultivating collaborative efforts of various disciplines in the educational and healthcare settings. With over 15 years of experience as a licensed and certified speech-language pathologist, Embry has devoted her clinical and academic career to adults with acquired brain injuries and progressive neurological diseases.

http://www.caregiver.com/articles/general/cook_for_dysphagia.htm?utm_source=Caregiver+Newsletter&utm_campaign=a38e745fb9-Caregiver_Newsletter_4_25_17&utm_medium=email&utm_term=0_8c5d5e6a5e-a38e745fb9-94169813&mc_cid=a38e745fb9&mc_eid=5f3c35a028

Compassion Fatigue Awareness Project

Legal Tools for Caregivers

Parkinson’s and malnutrition: what are the risks and how do you prevent it?

31st Annual Parkinson Disease Symposium | June 23, 2017

How to Cook for a Loved One with Dysphagia

Recent Posts

Recent Comments

Archives

Categories

Meta

Post Categories

Wisconsin Parkinson Association Mission

Contact

View Our Annual Report

Search Our Site

How to Cook for a Loved One with Dysphagia