Note: These are Bella's "raw" speakers notes. Thank you so much Bella for sharing them with us.
"Caring for the Carer"
Parkinson's Queensland National Conference (speaker's notes)
by Virginia Fay
INTRODUCTION. Virginia Fay, spouse of PWP. Diagnosed 1983 we are now early mid 50’s age range. I work full time as a Stock broker/Investment Advisor, wife, and Mother, Care Partner, and Home organizer. At the end of this I want to leave you all with three things I wish I had been told 20 years ago as a caregiver, and three things my PWP wishes he had been told 20 years ago. & three things that Health Care Professionals could find useful from our perspective and finally three areas our Research scientists could look into that would immediately assist PWP while waiting for a “cure”.
WHAT a Caregiver? We are DEFINED as the person who has the primary responsibility for the general well being of a PWP or who is other wise intimately involved with care issues. Spouses, doctors, health and medical professionals, other family members and friends can all be considered caregivers at various times. Early in the progression of this disease the symptoms may not substantially limit his or her physical abilities for many years. During that time, the necessary care may consist primarily in understanding and emotional support. For the Primary Care Giver, usually the Partner, spouse or otherwise, I have changed the name from caregiver, to care partner! This disease is one that affects the whole family of a PWP, and it’s a shared experience. HENCE CARE PARTNER. This is a journey we travel together.
Fab’s History (brief). I am very lucky that I have a Partner who wanted to fight this disease every step of the way! He never allowed it to take over his life; he nick named it, swore at it, and took control of it. THAT IS CONTROLLING IT, NOT LETTING IT CONTROL HIM. Point One. A POSITIVE ATTITUDE is paramount for both partners. .
In the early years after Dx I wanted to hide my head in the sand re PD. I did not want to know what comes next, and more importantly what happens towards the end. And when is the end? Etc. In the early years there was a great deal of ROLE Reversal, and swapping responsibilities.. Then came the gradual involvement of every aspect of the inevitable progression of the disease. When I first saw his then neurologist, he gave me the usual spiel of “with-in 5 years”, as he had given Fabs for the previous 3 years, when he had gone unaccompanied on a plane to Sydney for these 6 monthly visits. It is now, after 20 years, that I reject the “NEXT 5 YEARS” FOB OFF! I WANT HELP, AND WANT IT NOW.
AUSTRALIA lacks assistance and Government support for all but the elderly, but in many ways also for them too. I would love to see PARKINSONS CENTRES, everywhere, where one can get all the help they will need as the disease progresses. Hydro therapy, Physiotherapy Speech therapy, Dieticians, Social workers and Counseling if necessary. Places WHERE THERE IS SOMEONE KNOWLEDGABLE ABOUT WHAT ASSISTANCE IS AVAILABLE TO ALL WHO HAVE PD AND THEIR CARE PARTNERS AND FAMILIES. There are places like this available I believe in some of our Capital cities. We provincial cities need help too. Somewhere when the PWP can go for support, weekly, if not more frequently. STROKE victims have something along these lines, as do other people with disabilities, why not the PWP?
THIS IS PARTICULARLY TRUE FOR YOUNG ONSET PEOPLE WITH PD. They have no seniors card, no Health Cards, no Pensions, no income. Absolutely no recognition by the Government that they are in many cases totally and permanently disabled. Mostly because they on the whole have spouses who for the health and well being of their families have to work full time. I have been told by my accountant that it might be better for us both if I didn’t work, cause then the Government t would step in and pay for all sorts of benefits. WELL!.CARING FOR THE CARER means having your own life as well, and not imprisoning oneself in a situation which effectively makes you both invalids.
CARERS I BELIEVE, should be able to provide the GOOD THINGS IN LIFE for their partners, provide the escapes from their immobility, lighten their loads, give them something to look forward to, and generally PROVIDE THE LOVE, LAUGHTER AND FUN. Carers I believe should be encouraging all the independence they can muster for their partner. Later, as they condition progresses, they should still be able to do as much as possible, within the bounds of “conscientious neglect”, a term Rose Kennedy coined in allowing her children to spread their wings and be as independent and adventurous as possible, with minimal interference.
Sure we are there in their beds to help them get up during the night for the interminable PEES, SNACKING andproviding the pinching bag for their DEEP NIGHT SLEEP DISTURBANCES. How many of us have been the target of those violent dream stages, which come and go in the progression of the disease.
I am lucky enough to have a housekeeper during the week, allowing me to work (and effectively pay for that person, who provides my sanity.)
OH SLEEP DEPRIVATION…this is unbelievably ignored by many researchers and medicos when trying to deal with the reasons why their patients are so fragile emotionally and physically. A sleeping well Parkie is a Parkie who manages their disease so much better than those who celebrate a 3 hour straight night sleep as being an accomplishment. It seems to me there is hardly a person who has PD who does NOT suffer sleep disturbances. Let’s try to find something for that!
In some ways I am grateful, for this universal problem, I have met many many Americans and Canadians on line, and later several times in person, as they while away the mid night hours chatting in PD chat rooms, and Parkinson’s Disease Forums, during what is our log-on times, in the evenings in Australia. .I am the TEAM LEADER OF PLWP, an American organization , which unlike most in America appear to me to be fighting each other for the research $$to find the CURE This organization created by two terrific gals with PD for PLWP (people living with Parkinson’s), i.e. all of us.. Its PRIMARY FOCUS is QUALITY OF LIFE ISSUES. You can find us for Links, Chats, information and entertainment at PLWP.org
DEALING WITH HOSPITAL STAYS FOR PD PATIENTS, ESPECIALLY FOR NON PD RELATED MEDICAL AND SURGICAL PROCEEDURES. Is a particular bug bear of mine! Because of Fabians original gunshot accident, which precipitated his onset of PD at age 36, he has had so many complications and surgeries for related and non related complications. COMPLICATIONS are the operative word. WE HAVE HAD TO DEAL with at least 2-3 hospital stays annually (some in hospitals around the world), and in the last 12 years, at least one major surgery a year in Australia. NURSING STAFF are simply doing their job and following routines that of necessity are rigid. Often they do not understand the necessity of strict medication schedules for people with advanced PD, and the pin point accuracy, of getting meds on time, not 15 minutes early, and not 30 minutes after they were due. Many do not know how to read whether their patient is “ON” or “OFF”. They have never learnt the old fashioned methods of nursing which I call “read your patient”. ‘LISTEN TO THE SPOUSE”. They have lived with this disease since it’s inception WITH THEIR Partner .and they know their patient better than almost everyone. Including often their primary care physician and their Neurologist!. AS FOR THE GENERAL SURGEONS, ORTHOPEDIC SURGEONS, ANAESETHS, well forget it, they are technicians with a job to do).
PWP I have found have odd tolerances to many medications, especially those involved with pain management. I don’t believe we should have to sit by the bed watching medical staff and pointing out to them that this patient is in severe pain, and has not pressed the pain self administer button for hours on end. PWP needs are often so different . I have a couple of suggestions: Type up a PD medication schedule and when going into hospital take several copies, and have them place it in the CHART. Have a medical history also typed up (if applicable), and also have inserted into chart. Usually medical staff are grateful, and it makes great reading for them on their breaks. They come in and say. WOW, You have certainly been in the wars, but they also know that you are not to be ignored, and it gratifies me that they have actually read it.!
Have your Neurologist or GP let the Surgeon or Physician know that you know the PD schedules and can read the patient well. Again, MOST ARE REALLY GRATFULL to hand that aspect over to the spouse (and in the early years of the disease the patient themselves, if they are well enough).. Only three months ago, my husband had yet another gut obstruction, and his Primary Surgeon who usually looks after these things was enjoying a school holiday break with his family. So new surgeon, new staff, and the usual NG tube, and drip was set up. Our neurologist was also away, and besides he is in our Capital City. The new Surgeon told the nursing staff not to worry about the PD meds for the first couple of days, as he was “nil by mouth” anyway, and he would review it when he necessary. Imagine!! No Sinemet for 2 days?? TIME for the pushy wife to start jumping up and down!! Anyway, our sainted GP got a demented call from this spouse, and within an hour, I was informed that the Surgeon had called the hospital, and told the Nursing staff to follow my instructions re PD meds (after all I well knew how we had dealt with the same problems, maybe 30 times in the past). This is part of what I call CAREPARTNER EMPOWERMENT.. THIS should include NIGHT STAFF.. Who it appears to me, even in the new NEUOSCIENCES WARDS, have no idea that many of their PARKIE PATIENTS will be wandering the wards in the depth of the night. I would love to leave them notes as they come on so late. I would love to able to suggest ways of settling their patients which we have found works. Introduce them to other PWP on their wards, and let them sip hot chocolates together, and wander back to bed when they are sleepy again.
Now some general observations: We Care partners stumble from UNDERSTANDING TO ACCEPTANCE to BECOMING AN EXPERT OF SORTS. We become the VOICE to the primary physician treating our PARTNER. (How many of your out there have just endured 12 weeks of brutal PD symptoms, and then heard our Partner contentedly tell his Neurologist that everything is “fine”, on the check up visit?). It is very important that we find a specialist Neurologist who both parties have trust in and rapport with. This may well mean more that one over the progression period of the disease. I have found most Neurologists expect and want the partners in on consults.
Use Support Groups, either local, or “on line”, OR BOTH for both of you These are important in dispelling fear, both yours and the PWP. As well as providing support and research links.. I have just located a pamphlet produced by Parkinson’s Queensland called caring for yourself and Parkinson’s: a Resources Guide. I should have looked for this, or known it exists. It would have saved me hours of study and many telephone calls. Not all the answers are there, but many are. Again, everything to do with PD is skewed to treat this “old people’s disease”. The young onsets are all but denied. Use Web resources and Links. GOOGLE it. MY EXPERIENCE WITH PLWP. MGH and Care partners in general have helped me incredibly! Become involved. Understanding the medications and ways of making them work more effectively over the years. The importance of maintaining contact with friends and families, and being comfortable in public, even when symptoms make it apparent that there is a major medical problem.
This disease is so strange. No PWP is the same. What works for one, does not always work for another. My observation is that it is often 3 STEPS BACK AND TWO STEPS FORWARD. Finding things to do which are both comfortable with, bearing in mind, things change all the time. 10 years ago, we could never go to the movies, or theatre. It was simply too uncomfortable for him to sit for long periods, and be cramped. Now it is a super treat! External stimulation is so important: The joy we have both gotten from travel! STIMULATION appears to me to lessen the symptoms enormously!
HAVE A LIFE. Outside of PD. DON’T LET IT CONTROL your lives, for as long as possible. TRY NOT TO BECOME INDISPENSIBLE.. When you need a break, take it, and use others to help fill your gap while you regenerate. Don’t imprison yourselves with each other. Find outlets for both of you, and never think that things can only get worse. 20 years has taught me that. Me that! Symptoms change, disappear, come back, or diversify. There are a lot more tragic diseases to have than PD. Don’t let it rule you, and more importantly their lives. Tell it to take a back seat often. It works!
Now for the 3 things summary:
For the Care partner, I wish I had been told 20 years ago:
You will need to TAKE CHARGE some day, but in the meantime try to allow the status quo remain as long as possible. Enjoy each other and allow the PWP to control their disease.
!
PWP want and need to keep their Independence as long as possible
You have at least 8 years before you really see a big deterioration, later you will realize it is a joint journey, and that turning point, was only the beginning of the journey. Go with the flow in an as informed way as is possible.
My Husband Fabian wishes he knew:
The chronicity of the disease
The pathways the disease was likely to take.
The side effects of various medications
Medical Professionals I wish had been told
Don’t expect the expected of anyone with PD. No two are alike, and they can present with very conflicting and different symptoms and needs.
Use the resources that are available in treating your patient. This includes the partners, (your aims are the same after all). Look for other peer resources in other unexpected places. E.g. the Ward Charge Sister at one recent hospital of an adjoining Ward, who was also the care Partner for her Mother with PD>
Be flexible, and tolerant. Routines have to be broken sometimes in treating PWP.
Three areas I believe Research Scientists could investigate, which are rarely discussed yet common, I believe for many PWP
TYPE 2 DIABETES
SLEEP DISTBANCES AND DEPRIVATION
SEXUAL DYSFUNCTION
VIRGINIA FAY
0414 618851
August 2003