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 An Interview with Patricia Richardson (Page 2 of 3)

An Interview with Patricia Richardson

PR: When my father died six years ago, there was not anything even close to treat PSP. There are several different strains of PSP, and he had the strain of PSP that was the Parkinsonian type. That was just one of the things that confused us further because when he was diagnosed wrongly with Parkinsonís, it seemed that he was initially responding to the medication. People who have the Parkinsonian type can sometimes respond to Parkinsonian meds, at least initially, and he did for a while.  One thing I want to be sure and mention is there is a kind of treatment called VitalStim Therapy that can help with speaking or swallowing. The treatment is done by a speech therapist. They put these electrodes on their throat and have them try to speak or swallow at the same time. It got my father speaking again for another couple of months and he could speak while he was doing the therapy; and it kept him swallowing until he died. This therapy was miraculous. I am convinced if it had not worked out, my father would have had to use a feeding tube.

GB: You were also a long-distance caregiver for both your parents?

PR: My parents both took 10 years to die, give or take. My mother had so many different diseases and then had a stroke; it was one thing after another. It was a long, slow steady decline and loss before my mother finally left. Neither one of them were themselves one day and the next day died. This was not the way they expected to go. It was so shocking and so horrible. My sisters and I went through a long process where we would take turns visiting them. My parents insisted on retiring where none of us lived because they did not want to be a burden for us. It ended up being so much more difficult because it meant that every time there was a health crisis, of which there were many, we would have to take turns going there. So it would be me first because being a celebrity helps get attention at the hospital. Then we would go in tandem, one after another, so that there would be somebody there longer.

GB: It is what we call the professionalization of family caregiving. 

PR: Also, I really do not trust nursing homes. We had the best nursing home in Virginia Beach and my dad got hurt by a nurse there. They covered it up.  They did not file an accident report. They hid it. They did not put it in the records. They did not even tell his doctor.  Only because I happened to turn up and I had a caregiver in the room with him every day did we find out. One of the things I learned, and that I would tell the caregivers, is if you have a family member in a nursing home, never visit the same time of day.  Go and show up at 6:00 in the morning.  Show up at 8:00 at night.  Never let them know when you are coming.  You have to stay on top of them.

GB: That is exactly right. 

PR: And make sure you are checking all over their bodies to be sure they do not have sores.  If there is an incident ever, if you see that there is some kind of infection going on or something that happened, you check their chart to be sure it was marked there. Make sure that there was an incident report. These facilities are supposed to be reporting if there is any kind of incident. If it is not in there, you raise Cain. I just had to learn these lessons the hard way. There were really horrible things that happened and we learned the hard way. GARY BARG: The result is that you raised the visibility of your dad from being the patient in room 201 to being someone that people are really looking in on and caring about.

PR: Yes, but you have to be careful. We found out that some of the nurses were calling my father King Larry because they resented that. On the other hand, we heard there were people that had families who lived in town and did not have visits like my dad got.  Even though they may have resented him and called him King Larry, I do not think they dared do anything to him after that. They were worried because they knew we were watching.

GB: That is right. I think that is worth its weight in gold.

 

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