Finally made it back to a Telehealth conference. These come to us once per month, and are broadcast from a room in Providence hospital that has an interactive interface allowing us to see preseentations from various Doctors, therapists etc. Then we ask them questions. Provided, of course that we can speak loud and clearly enough. Today's session was on caregivng. I took notes because I can't help it, I'm a compulsive note taker. Since I got them, I'll pass them along.
Our presenter, Dr. Dan Burdick, started off by talking about "caregiver burden" which essentially means all the stress they feel that falls to (or on) them due to the fact they are the one primarily responsible for watching over a person with a chronic disease.
Dr. Burdick said that a caregiver's role needn't be burdensome, but that there are a number of factors that tend to make it so. Complications from the patient such as age, disease stage, and depression made things tougher for the caregiver.
Caregivers pointed to things like grocery shopping and transporting
their charges as primary contributors to their sense of burden. However the biggest predictor of caregiver burden was depression suffered by the caregiver. Dr. Burdick provided a URL for people wishing to assess their depression, alas, apparently I copied it down wrong. But don't get all bummed out about it, I found this screener for depression courtesy of the Mayo Clinic.
What can be done to help caregivers bear their loads? Dr. Burdick came up with the mnemonic "EARs", which stands for Education, Assistance, and Resources.
Education: Learn about PD, its meds and their side effects. Learn how to be a patient advocate. Learn the workarounds for various problems that can be fund through physical and occupational therapy.
Assistance: Build a team of family and friends to pitch in. Find people who will help with shopping or housework. This will help allay another concern, social isolation.
Resources: Support groups (our Anchorage group is fortunate to have a veteran caregiver, Betty Berry to help you with your caregiving questions.) The Northwest Parkinson's foundation has various services to help caregivers including a pamphlet entitled "Who takes care of the Caregivers? Here in Alaska one can also go to the Alaska Department of Health and Social Services for help.
For things a caregiver can do for themselves, Dr. Burdick suggested that caregivers be attuned to their emotional state, and to set aside time for themselves and for social contact. This is not selfish, it's only human. Dr. Burdick said that the people who know how to ask for help, actually last longer than those who just blunder alone along their weary way.
Finally it was noted that the new roles of "Caregiver" and "patient" become superimposed over the old roles such as husband and wife, parent and child. This can lead to problems as new realities make demands on the old relationship. One way of coping with this is to keep up parts of your old roles together- get out for a date or go for a walk.
When the question and answer time came I asked what the patient could do to help keep the caregiver going. One answer: Keep doing the things that are your responsibility as long as you can do them. If you were always the one who made the bed, don't drop this simply because of a diagnosis. If you still can do it, why would you stop? This isn't rocket science, people. Unless you actually ARE a rocket scientist. In which case, continue as long as possible.
Teleheath Conferences: Telehealth interactive seminars take place at Providence hospital the second Monday of each month, 1:00-2:00 pm in their oncology building off Piper st. Go to the
second floor walk down the lonnnnnnnng hall that stretches South from
the cafe and look for room 2401 pretty much at the end of the hall on