Thursday, August 2, 2012

FTD Routine - back on Track

First of all I'd like to apologize anyone I offended on my last blog on appropriateness. Some of what I wrote at the time I wrote was inappropriate and I've since deleted some of the passages. The blog was answering many questions that caregivers were enquiring about and some of what was written was offensive.

I used to be a very capable person flying 120 flights a year, 200+ nights in hotels, rental cars etc. There was no travel agent. I needed to book everything myself at competitive prices and then organize work at my destination. Today, I can barely make it through a day. Each task takes a ridiculous amount of time and energy.

For the last year I've been going to Starbucks '181' daily. It was my base of operations and I recently learned how fragile my life has become. It was months ago that Starbucks renovated and I've been struggling ever since. Starbucks '181' turned into a crowded, noisy place. The speakers were blaring and people were shouting to be heard over the speakers.

Of course in the middle of this mess I went to Seattle which made everything twice as difficult. Not only was that trip difficult, but I've been like a hobo since I've returned. Each week I've been trying new Starbucks and different venues. Starbucks decided to turn up the music volume in all there stores. That, on top of me being very sensitive to sound has made things difficult and frustrating. "God's love we deliver" charity food service has been a godsend, except it's taken a while to fit that into a routine.. They deliver Monday, Wednesday and Friday between 8:30 and 4pm. Memory Club, my support group was on Tuesday.  So my schedule looks as follows:

Monday:       GLWD
Tuesday:       Memory Club
Wednesday:  GLWD
Thursday:      Blogging somewhere - Starbucks downtown 
Friday:           GLWD
Saturday:        Domestification day
Sunday:          Blogging Somewhere - Starbucks downtown

I only have a few hours in the morning where I can really focus. I went from going to Starbucks 6-7 days a week, to not at all. I used to go to Starbucks before Memory Club and now that was out. The worker at Starbucks 181 told me arrogantly that they were going to keep the volume high even though they knew customers were complaining. He told me the "needs of the whole, outweigh the needs of the few" and many liked the volume high. He must've thought we were in a Star Trek episode and not a coffee shop.

It reached the point that I didn't know where I was going or what I'd accomplish each day. I decided that I needed to get my routine in order. I was spending many a day not even leaving the house. My filming dropped to minimum levels and I was turning into a House Potato. Change of routine is incredibly difficult with FTD or any type of dementia. The longer this chaos went on, the more difficult it was to change.

I needed to make some tough choices and implement difficult decisions to get back on track.

God's Love We Deliver was a godsend, only problem was I had to be home 3 days a week from 8:30am-4pm awaiting there delivery. The first 2 out of 5 times they didn't show up at all, nor did they call. There food is restaurant quality and helped me get past my day to struggles figuring out what to eat and also was saving me money. It was killing me to stay home all day, 3 days a week. I called and cut it down to 2 deliveries a week and them finally we worked it out where they would deliver 5 days of food once a week.

Next, my beloved Memory Club support group. Memory Club gave me the tools to learn to live with Dementia. I've been going there 11/2 years and had many friends. Not only did I get a lot out of it, I felt I contributed much to it. The facilitator, Carmen Nunez was the best group leader I've ever seen. Things change though. Where it used to average 8-13 people showing up, it now dwindled to 2-3. I kept going to support the group, but was no longer getting out of it what I used to. I decided to take off  the summer, get my routine back in order and evaluate later.

As luck would have it, my blog and the Forbes article on Starbucks actually got the attention of the District Manager of Starbucks as well as his boss. I spoke with both at length. I also explained how sad it was that many in the community no longer went there because it was no longer customer friendly. There were plenty of complaints besides the articles and the Starbucks corporation did take actions to partially return McBucks '181' to Starbucks status. The new speaker that was blasting was removed and put in the back of the store so customers no longer had to shout to be heard over the speaker. The long hard bench they installed had a comfortable custom made cushion put over it. The tiny tables still sucked but I could live with that. I also picked up a pair of noise reduction headphones before they moved the speaker and this now adds extra comfort. 

My McBucks '181' had returned to full Starbucks status. Many of the old regulars still will not come back, but I'm glad I don't need to take the subway downtown anymore. The store is still at least half empty a good deal of the time. In fact, I just came from the counter getting my free refill and thanked the manager and staff for screwing up the store because it's so quiet being half empty a good deal of the time. They snickered and sort of laughed.

Have been coming back here every morning for about a week now and I'm feeling so much better. No more getting up in the morning not sure what I was doing.

My new schedule:

Monday:       McBucks '181' - Book writing - Filming
Tuesday:       McBucks '181' - Blog- Filming
Wednesday:  McBucks '181' - Book writing 9:45am GLWD
Thursday:      McBucks '181' - Blog - Filming
Friday:           McBucks '181' - Book writing - Filming
Saturday:        Domestification McBucks '181' - Netflix
Sunday:          McBucks '181' - Book writing - Filming

I'm also working on an early evening schedule. Ideally, I'd like to have a couple hours of being productive in the evening. Twice this week I went out, backpack on and wandered for about 45 minutes before going home undecided. I'd also like to get in a couple of workouts at the gym each week. Hey, Rome wasn't built in a day, but I'm confident I'm heading in the right direction.



  1. This is so good to hear. Change is possible and positive things can occur out of negatives.I am so proud of you!Your pal in the Sunshine state!


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