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Parkinson's Caregiving? Important steps to take now

This week I’m taking a page from one of the wisest people on television: Fred Rogers.

He was always so careful, in speaking to his audience, to take their situations, their needs seriously. And he told children how to deal with the scary situations that they might see on the news.  “Look for the helpers.”


That phrase has become embedded in the culture, it seems, and people seem to give that advice to adults in awful situations. 


For us as caregivers, however, it turns out that, a lot of the times, we have to be the helpers.


And that can be overwhelming.


Fortunately, there are people we can call on. They are help for the helpers. And today’s column focuses on the two important early helpers that we caregivers can turn to: doctors and lawyers.


Q. Dear Terri

How do you get a doctor to hear you and really take the time to understand their Parkinson's Patient?  


Long story short - my husband had new and complicated symptoms that his doctor did not seem to acknowledge. I asked the doctor if these could be related to his medication.  I worried that my husband was overmedicated with his PD meds. 


His primary care doctor ignored my questions, and it wasn’t until we’d had two calls to our police department, one trip to the emergency room and a visit to a neurologist that anyone wanted to hear my questions.  Fast forward a few weeks and things are improved, but we had a scary few weeks while I felt that my husband’s needs were not being addressed.


I don’t understand why I had to work so hard to get the doctor to listen.  He kept saying “wait.” It wasn’t until we got a second opinion that he began to take my concerns seriously.


Signed,

Go with your Gut


A.    Dear Go With Your Gut,

Your question is so important.  I’m not a physician, you know.  But I can tell you that PD is such a complex and varied condition that it takes an expert to tease apart the various symptoms and medication effects.


In PD caregiving it can be especially hard because you, the care partner or caregiver, are not the  patient, and the doctor can only tell you what their patient, the PWP, allows.  Still, health privacy laws do not stop the doctor from hearing what your concerns are.  A doctor who does not listen to you as well as his or her patient may be missing important information needed to provide the best care to their patient.


You mention your husband’s neurologist. But I wonder if you are working with a Movement Disorders Specialist. A fact sheet from the  Parkinson’s Disease Foundation points out that neither a primary care physician nor a general neurologist has the specialized training and experience to give the best care to patients with PD. In fact, the Foundation points to a number of benefits –fewer falls, longer life span and a lower likelihood of needing out of home care—that come when PWPs have a Movement Disorders Specialist lead the PWP’s health care team.

Go With Your Gut, it can take so very long time to get a first appointment with a MDS that I believe that finding a specialist and making the appointment is a critical early step after a PD diagnosis.  Most PD carers report good experiences with these caring and expert physicians.


So along with going with your gut, also don’t stop speaking your mind.  You are your PWP’s best advocate.


Hugs x 4,

Terri



 

Q. Dear Terri, 

In your book you mentioned getting advice from an Elder Care attorney. I would like to do this but since my husband doesn’t see the need I need some help. He agrees to go, but since we have our affairs in order, he doesn’t see it as important. 


Could you give me some things I need to know and ask when I see the attorney? I hate to admit this, but I don’t know what to ask since I don’t know what may come in the near future.  


Signed,

What Do They Know?


A.    Dear What Do They Know?

You are right. I do recommend that one of the first steps to make after a PD Diagnosis is to see an Elder Care Attorney. Of course, I’m not an attorney and can’t give you legal advice


Fortunately, though, there is a very helpful page from the National Elder Law Foundation website. It explains that Elder Law attorneys “define their practice not by the type of legal problems they handle but by the type of persons they help.”


This means that the Elder Care Attorney will address more than just estate planning.  Most importantly, they will address asset protection, disability rights, housing options, powers of attorney, Medicaid rules, and other areas in which you may need help. 


Most important, not every lawyer who lists “elder care issues” on their website is right for you. Make sure that you choose someone who has expertise, practice and, ideally, CELA certification. (My wonderful attorney did not have this certification, but she explained why she wasn’t certified and gave me lots of evidence of the depth of her practice and expertise in elder law.)


Now, you may want to raise concerns with the attorney that are difficult to bring up in front of your PWP–their growing loss of abilities; your desire to have the option to fund out of home care; the need for them to stop driving; the urgency you feel to have Power of Attorney (medical, financial, or both), and end of life issues. But holding back important issues will make it harder for the lawyer to give you the best advice. 


One solution is for you to write down these awkward topics beforehand and drop an email to the attorney or their paralegal before the actual appointment. I suspect that a good elder law attorney will then be able to handle this issue with sensitivity and tact.


And I suggest this.  Ask the attorney to tell you all of the areas in which he or she can help make life with PD today more manageable, and can protect you for the future.  And then, before the end of your appointment ask this "is there there something else important that we haven't asked you?"


In most cases, What Do They Know, you’ll be wise to get this advice early.  Some of the important decisions that you need are time sensitive.  Also, the earlier you talk to an attorney the more you and the PWP can both participate fully in thinking through these issues.


Hugs x 4,

Terri


PS. More questions please!  If you have a question that you would like me to answer on an upcoming Friday, just email terri@seaburyhouse.com, and be sure to put QUESTION in your email subject line. And sign up to join my mailing list, (click "Grab Your Lifeline") where you'll get extra emails about the caregiving life--and more.




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