Though this webinar has “PSP” in the title, this webinar about caring for a person with a neurodegenerative disease is applicable to everyone in our support group. It’s one of the best webinars I’ve heard.
CurePSP has a new approach to its educational webinars. They are no longer live events but are pre-recorded and then posted to psp.org. I received word this morning that a webinar recorded on 6/29/10 has been posted to psp.org:
Topic: Caring for a PSP Patient – The Husband’s Perspective
Presenter: Chris de Brauw (the husband of someone with PSP)
Date: June 29, 2010
http://psporg.presencehost.net/file_download/e6926b2b-842b-4c2f-9968-c7cbf31e3304 ]
This is one of the best webinars I’ve heard because lots of practical information is passed along. And Chris is obviously a loving and devoted husband.
Here are some notes I took during this 60-minute webinar.
Robin
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Notes taken by Robin Riddle
Topic: Caring for a PSP Patient – The Husband’s Perspective
Presenter: Chris de Brauw (the husband of someone with PSP)
Date: June 29, 2010
CurePSP Webinar
(Mr.) Chris de Brauw and his wife Ann live in Evanston, IL. In his webinar, Chris encourages people not to put off their dreams.
As is typical with so many PSP families, the path to the PSP diagnosis is a long one. In 2004, there were the first signs of something not being right. There were major falls in 2005 on. For two years, Ann was diagnosed by various neurologists as having some type of dementia (vascular dementia, Alzheimer’s, FTD with MND or Lou Gehrig’s Disease, etc). Chris’s father had AD so Chris knew it wasn’t AD. Ann had good balance in the neurologists’ offices but had poor balance at home. A neurosurgeon attributed all the trouble to spinal stenosis and Ann had neck surgery (spinal laminectomy). It appeared for a week that the surgery was helpful but then the falling started again.
Finally, in December 2007, Dr. Tanya Simuni, a movement disorder specialist with Northwestern Memorial Hospital in Chicago, came up with the diagnosis of PSP, which finally gave recognition to Ann’s balance and movement issues. Chris was already thinking that Ann might have PSP. Since that time, the family has received excellent help from NMH, the Rehab Institute of Chicago, and a care agency.
With the PSP diagnosis, finally the family knew how to deal with falls! “Knowing what we are dealing with has enabled us to manage the disease, and maintain some level of sanity. These rare brain diseases need better awareness in the medical community.” It’s critical that neurologists in particular know the diagnostic tools.
A social worker from Northwestern Memorial named Diane Breslow speaks in the webinar as well. Diane is on the CurePSP Board. She says that it’s not unusual for the patient to behave differently in the doctor’s office than at home. It’s important for caregivers to tell the MD what’s going on at home.
Chris notes that the limited research into these diseases is progressing very slowly and in piecemeal fashion, the research “will not benefit us directly. Our reality is that we are dealing with a degenerative, incurable condition that, ultimately, will be terminal. I have to accept this. What I can do and must do is to make this process as positive as possible.” As the Dalai Lama says: “Human suffering is everywhere, but being happy or unhappy remains a personal choice.”
One way to do that is to realize that you can’t do this alone and develop a support system. The support system includes medical and therapeutic support, a therapist for the caregiver, a social worker for the family, day-to-day care support, and family/friends/community.
Diane notes that support groups can be very helpful. Peer-to-peer support is an option. Palliative and hospice care can be very helpful at the appropriate time. There is no one single support that will be the answer. The support system can change over time.
The family’s first social worker was a free-lancer recommended by one of the neurologists. The social worker recommended the family move out of their Victorian home, where Ann kept falling on stairs. Another recommendation was that Ann get a personal trainer. Marla Brodsky, the trainer, has been working with Ann twice a week for nearly four years. They work on (or have worked on) balance, strength, flexibility, swallowing exercises, and walking. Marla is also a nutrition expert.
Friends and family now donate towards Ann having a bouquet of flowers each week.
Chris encourages families to keep going out to the same restaurants and stores. People in the restaurants and stores become helpful again.
Chris’s goals for staying positive:
1. Do whatever I can to keep Ann as well as possible for as long as possible
2. Keep our lives as “normal” as possible
3. Give Ann control over things she can control
4. Blame the disease when things happen
5. Learn to accept help
6. Look for easier, safer solutions
7. Keep people in the loop
8. Slow down
9. Make sure I take care of myself, and our caretakers
For goal #1, this is what they’ve done:
* Moved out of our house, into a condo all on one level
* Ann’s personal trainer
* Never gave up looking for a cause when the diagnoses didn’t add up
* Great diet, fresh foods, and cooking from scratch
* Minimize medications and eliminate things that don’t appear to work. At present, Ann is only on two medications.
* Do as much as possible and get in as much stimulation as possible, but protect her from doing too much
For goal #2, this is what they’ve done:
* Ann shops for food, and directs the cooking
* Sleeps in a regular bed
* Wears normal underwear
* Uses a regular napkin
* Does her email
* Sunday dinner with the kids
* Holiday meals as usual
* Regularly go out to our place in the country
* Visit familiar restaurants, where they know we will be making a mess
For goal #3, Ann controls what we eat, which movie we are going to see, where we eat out, what TV show to watch, when to go to bed, what clothes to wear, whom to invite over, etc.
For goal #4, no matter what happens we try:
* never to get mad at the patient
* say “no big deal”
* have a positive outlook: “never a dull moment” and “where would ‘Shout’ be without us?”
* not to panic when there is blood
* try not to blame anyone (yourself, the patient, anyone) when accidents happen
* we tried to avoid falls, but they still happen
For goal #6, this is a constant quest. As the disease progresses, you are challenged, all the time, with new problems to solve. Equipment they used and recommend: bike helmet; bedside commode that they’ve placed over the toilet; shower chair; UStep walker; lightweight transport chair with brakes at the top by the push handles; custom-built wheelchair that is good for sitting in long periods; balance ball and “balance exerciser”; pedaler for leg and arm exercising; chair cushion; eating using a dish with sides (like a gratin dish); raising the height of the dish (by using a thick book); plastic eye glasses (as the steel-rimmed glasses caused a major facial injury); nighttime rubs (bed-time is a moment for some caring rubs including Tiger Balm and a product called New Skin Scar Therapy).
Forget about installing wall-mounted bars around the toilet. But these bars are useful in the shower.
For goal #7, the family uses email a lot. Remember to recognize and thank people for their efforts and contributions.
For goal #8, Ann’s condition has been a “major lesson” for Chris in how to slow down the pace of things and be more patient. Chris says things to himself like “You have all day.” Chris takes naps to catch up on sleep.
The months and years add up. Chris and the caregiver Regina are getting better at dealing with the constant changes, the stresses and concerns. With Ann’s decreased mobility, the risk of injury from falls has lessened but the physical challenges connected with moving her have increased. The best way to prevent falls is to be very close to Ann. Ann’s decline has been gradual.
For goal #9, to fight stress, Chris takes off for a few days every 4-8 weeks. The hired caregiver Regina takes time off when she needs it. Chris sees a psychiatrist. Talking to the psychiatrist means that Chris doesn’t have to burden his children with his concerns. The family has a night nurse 3-4 nights a week to look after Ann so that Chris can sleep uninterrupted. Chris does yoga, swims, and plays tennis. He also plays chamber music with various groups.
Final thoughts: (note that Chris breaks down while reviewing this list)
* I am her husband and her pal
* I never try to act like a therapist. I leave that role to others
* I give her companionship and she does the same to me
* I try never to lecture her but just talk to her, encourage her, and take care of her
* I dress her, put her to bed, hug and kiss her good night
* I get lots of kisses in return
Diane notes that Chris is, obviously, emotionally connected to Ann. He’s on the same page with her. He’s not jumping ahead 3 months, 6 months, a year into the future. He’s by her side every step of the way. Chris is very open to learning from everyone. They all have something to give, and Chris is open to accepting this information. He also learns from his own experience. (Example: eye glasses.) He’s also a great observer of Ann. (Example: monitoring medication.) Very importantly, Chris takes care of himself. In keeping himself well, Chris is better able to help Ann. Chris has kept his own life, and that’s important.
Chris says to all caregivers:
* This is not easy
* You will be tired
* But if there ever was a time in your life someone needs to be able to depend on you, now is that time
* Find comfort in knowing that you know exactly what is most important: to be there and help and care
* Develop your support system
* It *is* an extraordinary experience — a journey
* Feel free to contact me: [email protected]