can't you see the sunshine….

Selecting a caregiver

In the Spring, Ben went through an evaluation by the Movement Disorder Clinic at UNC. I knew this clinic exsisted. Why I waited to schedule an appointment with them I have no idea. Anyway, we are now under their care. It is a good group. Run by a woman neurologist. They treat the whole person and me too!

As part of their reccomendations they suggested that since we have no family living nearby, we look in to getting some outside care for Ben. So I could be gone from the house for more than 2 hours without coming back to some sort of disaster. So that was the project for June.

Last October, Ben and I went to the Caregivers Summit. We collected business cards from many caregiver groups that were exhibiting there. I made notes on the cards. Like, did the rep look up from her phone when I approached the booth? Did the rep speak to us? There were two that I rated highly. So, in June, they were the first two that I called.

For businesses offering care givers it seems that the inquiry process requires two people. One who comes out to ‘sell’ and a nurse who follows up to assess what type of care is needed. I called the first group and set up appointments.

Now some background. I used to interview people to hire for a job that required following driving directions. (This was in the dinosaur age, before GPS!) If possible, I would set up the interviews at a hotel in Raleigh that was difficult to find. It required the applicant to listen to me and get the directions and follow them. If the applicant didn’t show up on time or was flustered because they got lost. Strike One!

So first group. Making appointments. Two are required. Okay, how about the ‘sales’ person the first day. The nurse the next day. (this is my top choice. The one I rated highly in October) Appointment lady says okay. I confirm two appointments with her. Two times before I end the phone call, I confirm the TWO appointments.

‘Sales’ guy comes. We talk. TWO times during our discussion I mention that nurse is scheduled for her appointment the next day. Next day, nurse appointment time comes. No nurse. No phone call. After 30 minutes of waiting I call. Ohhhhh, everyone is SURPRISED that an appointment was scheduled. No one seems to be able to find this. We agree on a new appointment several days in the future.

Next week, appointment time for the nurse. Fifteen minutes after scheduled time with no arrival, I call. Thirty minutes later she shows up. No apology. No explanation. With an attitude that she shows me she clearly does not want to be there. Well okay.

We move on to the second group. I make the phone call to set up the appointments. The woman wants to send me an email. That’s fine. Now my email is not difficult but it can be confusing. I know that. It has the word ‘to’ in it. Not too. Not two. Not 2. When giving out my email I explain that it is all lower case, no numbers, all words. Then I say the email address and then I spell it. Starting with ‘t o’. It’s a phrase. ‘Too’ ‘two’ or ‘2’ would make no sense. Next day, phone message “your email address ‘two…..’ bounced back as undeliverable. Please call me.” Strike one! Sales person comes. Nurse comes. I decide to possibly overlook ding bat appointment person.

Third Group. Appontment made. Owner of company and nurse are coming. Day of appointment, about 30 minutes before, I get a phone call. Owner of company has been in an accident. Flurry of phone calls and rescheduled appointment. Appointment day comes. Basic sales person and someone else who I have no idea what her function is arrive. This sales person is the only one to comment on how well adapted our space is for Ben. And how pretty our deck is. They move up several notches. But they want their person to come 8 hours a week. We can’t afford that. We need only 4 hours a week. They agree to see if there is a person who just wants 4 hours and get back to me. Several days later she gets back to me. We make arrangments for someone to start two weeks later. But the nurse still has to come. Nurse shows up, 15 minutes before the care giver starts her first shift with us.

The caregiver is very close to my age. Looks a good bit like me. I am fine with this. For what she needs to do, she is just fine. So now, I can leave from 2 until 6 on Thursday afternoons. I can actually go shopping. Go to multiple stores and have enough time to try on multiple things. No more buying several sizes, colors, bringing them home, trying on and taking back. I could go see a movie. I could have lunch with a friend. I could wander around the library. I could go swimming. A whole world is waiting…..

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Ben’s Birthday

Ben’s birthday was July 1. We celebrated on the 30th by having brunch at Poole’s Diner in downtown Raleigh.

We were a big group so we had to wait for a table. So we had a drink while we were waiting. It was not hard to get Ben in and out of the restaurant. Food and service were good. Sorry no food pics. I felt like it was a nice size meal, without feeling stuffed and without dragging home left overs. I would certainly go back.

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Freaky Elephant Ear

I have been growing elephant ears for years now. This is the first time I have ever seen this.

When I first noticed this, I was inside looking at the plant, thinking this two leaves that are just entertwined. I went out to look.

So it is two leaves on one stem. Never seen that in all the years of growing these bulbs.

Elephant ear bulbs seem to do real well for me. I have grown and given away bulbs for years now. Hopefully some of them are still growing in Italy. I know that the family that bought our property in Virginia still plant elephant ears every year. Ohhh, I don’t know if that is the legacy that I want to leave….

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Happy Birthday Ben!

We recently went to a conference for the disorder that Ben has, PSP. It is similar to Parkinsons, but different. A very nice thing that the drug company, UCB, did was to bring in a professional photography company and have them pose us and take pictures. Thanks to Jonsar Studios for these great pictures.

Ben and I have been together for a long time now. We still have a lot of fun and I wish him many, many more wonderful birthdays and all my love.

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