There was a CurePSP webinar yesterday. (PSP = progressive supranuclear palsy) I didn't alert people to it here because I thought it would be rather unrelated to the LBD experience. In looking over the notes I took from the webinar, I think the presentation part is certainly applicable to caregivers for any disorder, especially the "lessons learned." Only the Q&A part is more PSP-oriented.
Here are my notes...
The webinar was a personal view of dealing with PSP through the eyes of a veteran caregiver, John Burhoe. John and his wife (Mary) Lou were married almost 45 years, "with the last five under the cloud of PSP." He shared his story today because he wants to help prepare others going down this path.
John had two "advantages" not all have:
* ability to generate income while being home 24/7
* he is 6'3", 225 lbs while Lou was 5'5", 130 lbs.
The PSP journey began with Lou falling in the bathroom in 2002. They visited an MD at Scripps in San Diego. The MD's diagnosis was "Parkinson's Plus." An MD at Mass General in Boston saw Lou three times; on the third visit, the diagnosis of PSP was given.
"The journey is much like a flight of stairs as opposed to a declining ramp with periods of relative stability punctuated by sudden and permanent drops." Example: In January 2007, Lou lost the ability to speak literally overnight. This ability never returned.
Lesson learned: Find multiple sources of support. These may not necessarily be where you would expect them.
* SSI (Sports, Spine & Industrial) is a facility in Greer, SC providing a combo of sports training, workout, and PT. Lou went twice a week. John could also work out at the same time.
* Portable aspirator ($250) - useful for choking spells
* Writing board is a great help in communicating. Also, ask yes/no questions (thumb up/down, or squeeze the finger).
Lesson learned: Educate yourself.
* curepsp.org: This website is being revised later this year and will be even better.
* Find other websites for info
* Support groups are a great source of info and comfort. Often caregivers get more out of these groups.
Lesson learned: Maintain the relationship.
* Look for and share the humor, albeit sometimes dark. John told the story of the "toilet tango" - dancing to the bathroom.
Lesson learned: Make sure others know the person behind the mask that you know. Introduce them to that person. NEVER let anyone refer to your loved one in the third person when he or she is sitting right there. (eg, "Does she want this?") Nothing is more dehumanizing or degrading than that.
Lesson learned: Look out for "compassion stress and fatigue" and do something about it if this occurs.
* Short temper
* Feeling sorry for yourself
* Social withdrawal
* Resentment towards your loved one
Lesson learned: Take action.
* Ask for help. People want to help but you MUST tell them how.
Lesson learned: Take a "breather" to get away from the situation. And give your loved one a breather from you!
* You will lose your temper and say things you regret. You're human - forgive yourself. Sounds easy, but it's not.
Lesson learned: Don't wait - do it now and for as long as you can. Examples: put a porch on the back of their house. Took car trips. Took airplane trips to visit grandchildren. The airlines are very helpful with wheelchair-bound passengers. Every day up until December 2007, John and Lou were in a car. They went to church up to the week Lou died.
Lesson learned: find a good local neurologist with whom you are both compatible.
Lesson learned: Allow yourself to have diversions.
* Three businesses with partners
* Promoting the concept of hospice
* Building awareness of PSP
* Reaching out to sister organizations for ALS, AD, and PD.
Lesson learned: Don't feel sorry for yourself. What good will that do?
* Count your blessings and treasure the times you've had and still have together. John had a kitchen table filled with pictures of Lou and family and friends. Every time John walked by the table, he'd pause, look, and count his blessings.
* Right now focus on your loved one's happiness.
Lesson learned: Be willing to fail. Whatever it is, try it. If it doesn't work, and some won't, at least you gave it a shot.
Issues you need to decide for yourself:
* whether to stay at home or utilize an extended care facility. This is often decided based on the physical size of the care giver and care recipient.
* whether to insert a feeding tube or not. Thoroughly research this, including having discussions with your MD. He recommended this website for some info on this decision: neurosy.org/disease/psp/psp-swallowing.html
Lesson learned: Don't wait to get hospice involved! Get them involved early! John and Lou had hospice for 18 months.
* visit your local hospice organization and discuss the certification criteria
* major source of information, support, compassion, and experience
* Medicare covers this
* provides medical info, personal care, caregiver support, spiritual support
* you need an MD's prescription
One day, Lou said: "I want to go home. Are you OK?" She said this after not having spoken for a year. The family gathered. Once the family was gathered, Lou died peacefully. (In 2008.)
John said that he felt relief in Lou's passing. He pointed out that no one talks about this. Relief is "a natural phenomenon that everyone feels because a great load has been lifted from your shoulders and you now have your life back. No one talks about this but everyone experiences it." After Lou died, for the first time in five years John had his own life back.
The five-year journey brought John closer to God.
Feelings and memories of his wife Lou are triggered by all sorts of things.
John established the "Mary Lou Burhue Scholarship Fund" to honor his wife and provide assistance to young people who mirror Lou's core values of dignity, character, grace and humor in the face of adversity. Awards totaling over $20K have been made to 12 students.
John got married again about a year after his wife died. His new wife is Carolyn, Lou's best friend of over 25 years. John responded to those who wondered about the "quick" re-marriage. John made two points. First, he had been grieving for Lou long before she died.
Second, John provided this quotation: "Your love for one person will never diminish your love for another. Love never divides, it always multiples." -- The late Dr. W.A. Criswell of Dallas
"Life goes on...honor your loved one by participating in it."
Questions and Answers: (answers are by John Burhoe, unless indicated)
Q: Do PSP patients understand what is happening to them?
A: Yes - for Lou. This is not true for everyone.
A by Janet Edmunson: We need to act as if the loved one hears and understands everything.
Q: Since PSP and CBD are degenerative, what is the point of regular visits to the neurologist?
A: This is a dark view of things - saying "what's the point?" Never give up. Never stop searching.
Q: Can you talk a little about your experience with sleep patterns and PSP/CBD?
A: John and Lou slept together throughout the disease. Neither John nor Lou had problems sleeping.
A by Janet Edmunson: Her late husband Charles (with pathologically-confirmed CBD; died at age 51) had terrible problems sleeping. Charles woke up hourly and he also moved around in bed a lot. The only medication that allowed him to sleep was Seroquel, an antipsychotic. Janet used TylenolPM for herself. Janet also slept on the floor next to the bed.
Q: Will you elaborate on your use of the portable aspirator?
A: It cost about $250. It took a long time to feed Lou. Liquids were thickened. Lou experienced one or two hour choking spells. These were more episodes of gagging, not coughing. The aspirator could be used to get some of the food out that had lodged in the throat.
Q: If you feel incompatible with your neurologist, what is the best way to find another one?
A: John did fire a neurologist from Duke. He found a local neurologist that both he and Lou liked.
A by Janet Edmunson: Use the PSP Forum to ask if anyone knows a neurologist.
A by Kate DeSantis, CurePSP: People can do a Google search on "movement disorder specialists." Search on WeMove.org for MDs. Email Kate (email@example.com
) for an MD referral. She has a list of MDs associated with the Movement Disorder Society.
A by participant: Referrals to local movement disorder specialists can be obtained through the APDA (American Parkinson Disease Association) Information & Referral Centers, apdaparkinson.org.
Q: Does/can hospice involve giving up therapies? PT, OT, speech? And meds?
A: Hospice doesn't normally cover therapies. They
A by Janet Edmunson: If a therapy involves comfort or safety, hospice should cover it. You might get occupational therapy because they want to make sure the patient is safe in the home. Every hospice is different.
Q: Did Lou take antidepressants or other meds that you found helpful?
Q: What is the best way you found to prevent falls?
A: He's not a good reference for this question. Lou's first fall was her last fall. John is large enough that he was always able to prevent her falls.
A by Janet Edmunson: "Impulsivity" happens. Charles would get up on his own, despite being told that this was unsafe.
Q: What were your warning signs that Lou was nearing the end?
A: In Lou's case, she decided when it was time to throw in the towel and she decided the time of her own death. In the last week, hospice put her on morphine. "People can very much pick the time and place of their death." Lou "fought the good fight...and finished the course."
Q: How did you communicate with Lou once she was unable to move her hands well?
A: John and Lou had been married a long time, he usually knew what she wanted. Lou was able to squeeze John's finger up until the very end.
Q: What is your experience with vision problems?
A: Lou lost the ability to read very early. John and Lou got out a lot and attended many social events.
Q: What do you think is the best way that family members living away from the patient can be of help to the caregiver?
A: Visit, if you can. Sometimes giving money can be helpful. Let the caregiver and patient know that you care and you are there.
Q: A participant stated that a "transfer platter is helpful for moving patients between bed and chair, etc." It was later described as a 12-14" disc.
A: Neither John Burhoe nor Janet Edmunson were familiar with a "transfer platter."
Q: Will you speak to how to handle inappropriate behavior in social situations?
A: Lou never behaved inappropriately. John feels blessed.
A by Janet Edmunson: Charles went through a stage of yelling, which was very uncharacteristic. He sometimes got agitated in public places. Humor might help. Sometimes they would just have to leave the restaurant or public place.
Janet told a story about Charles's love for frozen yogurt. He would end up with frozen yogurt all over his face and clothes. They would just laugh about it. It was a special treat. So what if she had to wash his clothes after each outing?
Q: How did you explain the disease to your grandchildren?
A: His 5-year-old granddaughter didn't require an explanation. The granddaughter just gave love to Lou, and Lou gave love back. Kids have wisdom and behavior beyond their years. Even the older grandkids didn't require an explanation.