How Can I Support Someone With Parkinson’s At The Advanced Or Palliative Stage
In the advanced stages of Parkinsons, your patients care needs may be more complex and require careful planning along with the patient, their family and other health and social care professionals involved.
Palliative care should be holistic, considering the whole person to support the personal, social, psychological and spiritual needs of your patient and their family. It should give your patient some control and choice over areas such as treatment options and where they will be cared for, as well as providing advice and support to all the people involved in their care.
Palliative care in Parkinsons may be supported by a number of professionals, including a Parkinsons nurse specialist, local hospice or specialist palliative care team, physiotherapist, occupational therapist, speech and language therapist or dietitian. Many people with Parkinson’s also find complementary therapies beneficial.
It is important that you find out whether the person has a care plan in place regarding their preferences for how the issues surrounding advanced Parkinsons should be managed. This could include legal documentation such as a Lasting Power of Attorney and an advance care plan. Advance care plans include information on what the persons wishes and preferences are for their care in the future. They may include decisions on any treatments the person doesnt want to have in the future this is called an Advance Directive, Advance Decision to Refuse Treatment or Living Will.
Please Fill Out This Form And Print Legibly
Doctors office staff, please take note of this one. I cringe whenever I go to see a new doctor and I have to fill out reams of paperwork. My handwriting is atrocious it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.
Examples Of Delusions In Pd
- Belief: Your partner is being unfaithful.
- Behavior: Paranoia, agitation, suspiciousness, aggression.
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Be Honest With Each Other
A trap some caregiver-patient partners can get into is one person becoming the nurse while the other is demoted to helpless patient. Thats not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinsons is perfectly capable of doing.
As a caregiver, try to start an open dialogue for tough conversations with your loved one where you come to an agreement about when the loved one truly needs help.
Plan For Social Interaction
Emerging data and information are revealing that socializing and social networking is a part of the formula for the neuroprotection of people with Parkinsons. If there are no social interactions, it would be most beneficial to make a plan to include getting the person-with-Parkinsons out with others.
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Everything Will Be Fine You’ll Be Ok
This shallow comment doesn’t acknowledge the ups and downs a person may go through with Parkinson’s. This condition puts an enormous burden on a person’s body. And while it may not be directly fatal, it can put a person’s life at risk in other ways. It can be uncomfortable, painful, and some may feel embarrassed by the changes to their body.
So everything may not be fine or OK. A person may feel good some days, but sometimes they may feel pretty rough. Ultimately, saying this comment makes you sound out of touch and dismissive.
What should you say instead?
I know this has been difficult for you sometimes, but I’m here to support you no matter what.
Parkinson’s is part of your loved one’s life. Saying that you’re with them through thick and thin is more reassuring than a throwaway comment that sounds nice.
Related Diagnosis: Lewy Body Dementia
Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.
In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.
This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.
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If I Have Speech And Voice Problems How Can I Maintain And Improve My Communication
Some tips to improve communication include:
- Choose a quiet, low-noise space. Turn off televisions, radios and other devices that create noise.
- Speak slowly.
- Make sure your listener can see your face. Look at the person while you are talking. A well-lit room improves face-to-face conversation, increasing the ability to be understood.
- Use short phrases. Say one or two words or syllables per breath.
- Plan periods of vocal rest before planned conversations or phone calls. Know that fatigue significantly affects your ability to speak. Techniques that work in the morning might not work later in the day.
- Keep your throat hydrated. Drink plenty of water. Dont drink caffeinated or alcoholic beverages. Use a humidifier if the air in your home is dry.
- Keep an upright posture, straight chin, slightly lifted neck to improve airflow from lungs to your vocal cords.
- If you are soft spoken and your voice has become low, consider using an amplifier.
If some people have difficulty understanding you, these additional strategies might help:
How Can Parkinson’s Affect Someone At The Advanced Or Palliative Stage
Parkinsons progresses in stages: diagnosis, maintenance, advanced and palliative. Professionals should have talk to people with Parkinsons about advance care planning in the earlier stages of the disease. This can allow them to express their wishes and preferences for their care in the later stages of the disease and make plans for the future.
Although the condition progresses differently and at a different speed for each person, the advanced stage can potentially cover a long period of time.
Problems that affect someone with advanced Parkinsons may include:
- medicines being less effective at managing symptoms than before
- having to take lots of medicines to manage symptoms and side effects
- more off periods when the effects of medication are reduced, and people experience movement fluctuations and involuntary movements
- increased mobility problems and falls
- swallowing difficulties
- less control of their Parkinsons symptoms, which become less predictable
Some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection, such as pneumonia. People with Parkinsons most often die because of an infection or another condition, usually caused by Parkinsons.
Well This Column Is Taking A Turn
Instead of the things you shouldnt say, I want to share five things that you cansay to people with Parkinsons.
Make sure that your comments are encouraging, informative , or bring lightness or humor to the situation.
If youd like to make a positive difference in the life of a Parkinsons patient, try my following suggestions of things to say that may change their day for the better.
Telling Family About The Diagnosis
Article written by Jackie Hunt Christensen.
There will come a time when you will want to let others know about your diagnosis. Deciding when and how to break the news to your spouse, children, friends and neighbors can be a source of immense stress and worry. While it is impossible to make these conversations pain-free, an important thing to remember is that timing and preparation can help minimize the impact on everyone involved.
To start, you probably do not want to discuss all the details of your illness, but giving those closest to you accurate information about your Parkinsons diagnosis and how you are handling it is essential. This way they are prepared for what could happen down the road and how it will affect them. Think of these interactions as the beginning of a conversation that will hopefully continue as you learn to cope with your illness.
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Everything Happens For A Reason God Never Gives You More Than You Can Handle
First, the other person may wonder what reason would justify them developing Parkinson’s. Why do they have to sacrifice their health for a reason they may never understand? Finding a higher purpose in suffering is best done by the person in their own time, not because someone told them what it meant. Hearing it from someone else can seem harsh.
Second, it can seem like everyone’s response to Parkinson’s is measured and put on a chart for comparison. It adds a “pull yourself up by your bootstraps” expectation to managing a complex physical condition. It’s dismissive of the person’s struggle and discomfort. And while every individual can manage their mindset to some degree, this comment makes it sound like the burden of coping is solely on the individual’s shoulders.
What should you say instead?
It’s tempting to say something that puts the situation into a neat little box. Instead of referring to destiny or a reason, admit that youre at a loss for words. That’s more honest and relatable, even if it sounds awkward in your mind.
- “I want to say something really helpful and comforting, but nothing sounds quite right.”
- “I’m not sure if this helps, but I just want to say I’m here for you.”
I Dont Know What To Say
Your husband performs well when his adult children visit and at testing appointments with his doctor, but you know its a different story when its just the two of you at home. What can you do to get the help you and he both truly need?
What should you do when your parent with dementia doesnt remember previous discussions about decisions about their care? And how do you even have difficult conversations with a parent when you live on the other side of the country?
These are just some of the complicated issues that were addressed during the question and answer portion of the caregiver webinar entitled: I dont know what to say Beginning difficult conversations. The webinar was presented last month in collaboration by Alzheimer Society Canada, Parkinson Canada and Multiple Sclerosis Society of Canada. Social workers Elaine Book and Amy Freeman made the presentation, with social worker Theresa Jiwa joining the panel for discussion afterwards. This is the third in a series of webinars especially for caregivers. You can access other webinars and podcasts here.
We all want to develop deeper connections with the people who are important to us. The webinar begins with this statement and explains the attitudes, processes and strategies that can help you achieve a meaningful connection, especially when relating to loved ones with neurological conditions.
The webinar addresses six challenging topics that caregivers frequently need to address, including:
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How To Be A Good Spouse When They Have Parkinsons
July 28, 2020 by Zach Galati
Being a good caregiver to someone with Parkinsons can be a difficult job. If the person you are giving care for is your spouse then this can be like tiptoeing on eggshells. So, I wanted to share some of the tips and tricks I have learned from being a caregiver to a spouse with Parkinsons over the last few years. These tips have helped our marriage not only avoid breaking down but have helped our marriage flourish.
Making sure they take medications
Something helpful I do for my spouse is to remind him to take his medications. We set up alarms on his smartphone so that he is reminded when to take his medication. We bought weekly pill boxes with 3 compartments per day and set them up a week at a time. This makes it really easy to see if my spouse has taken their medication or needs help remembering. I can also encourage my spouse on days when taking medication can feel like too much of a chore.
Assisting them in getting to the doctors
Depending on where your spouse is at, they may not be able to get themselves to their doctors appointments. I usually drive my spouse to the doctors office or hospital, and he has agreed for me to come into his appointments with him. I usually jot down notes of what is said to make sure we dont forget, and we can talk it over again when we get home. However, arranging someone else to come and give them a ride to the doctors is also a great way to help out your spouse and give them less to worry about.
What You Should Say And When You Should Say It
For many people, deciding who and when to tell about a Parkinsons diagnosis is a source of anxiety and fear. Fortunately, the decision to tell others is yours alone, especially when you are newly diagnosed. But as time passes and your symptoms become more pronouncedworsened by stress or disease progression it is important to let those you see on a regular basis know about your diagnosis and how it will affect them. Young children almost always know more than we think they do. And friends and family members, too, may observe symptoms such as gait issues and slurred speech, and arrive at their own conclusion.
Before having these conversations, however, you will want to take some time to prepare. Actively thinking about how much information you care to disclose before seeing your grandchildren for the first time since your diagnosis or before your next family reunion will help you anticipate potential questions and give you more control over these stressful situations.
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You Dont Look Like You Have Parkinsons
This has to be my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak and I am totally exhausted.
A comment like this can minimize the hidden symptoms which are very real to the person with PD. Most people do not understand what those of us with the disease deal with on a day-to-day basis.
Learn More About How Parkinsons Affects Families & Relationships
Much more can be found in a powerful new edition of Davis Phinney Foundations free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinsons and the family along with tools care partners may find useful along their caregiving journey.
Its jam-packed with up-to-date information about everything Parkinsons, plus an expanded worksheets and resources section to help you put what youve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.
Request your copy of the new Every Victory Counts manual by clicking the button below.
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What Not To Say To Someone With Parkinson’s Disease
While what each individual experiences and finds offensive can be subjective, a rule of etiquette when discussing Parkinsons disease is that it can be touchy for many individuals. Whether an individual faces the day-to-day struggles of PD or not, articles relating to Parkinson’s and proper communication can make the lives of those with Parkinson’s more comfortable. Certainly, there are numerous misconceptions about the disease, and most patients dealing with Parkinson’s are generally open to letting people know what makes them comfortable and what doesnt. If someone is finding it difficult to express these feelings, however, discussing concerns with a therapist and/or medical professional could be a beneficial solution. Although PD can affect people differently, keeping certain sensibilities in mind at all stages is courteous.
Parkinsons disease is not an easy condition to live with. It has its own everyday struggles with its symptoms while trying to manage ones day-to-day activities. There are many misconceptions about the disease, due to which Parkinsons patients have to face a number of uncomfortable stares and remarks. With this in mind, it is important to maintain a certain level of sensibility and compassion with Parkinsons patients.
Offering help to those with PD is a kind gesture, but overdoing it can worsen their condition and may lead to unwanted stress as well as false perceptions about the individual.