It's a bit after 6am and I am at my office in Starbuck 181, Northern Manhattan. As usual it has been a unique week.
A few days ago I went to the local supermarket and picked up grapes for dinner. It was busy with a long line at the cashier. When it came to my turn I swiped my EBT card and the cashier after a few moments announced out loud, "is that Debit or Food Stamps"? I said, "Food Stamps" and she said, thats $5.95. I quickly retorted that I was happy that I only received a $1.45 a day in food stamps. At that daily allowance, I know I would be at least spared four days worth of public humiliation.
This story of unintentional humiliation I have repeated to numerous people over the last week. Most people's reaction was pretty much the same, until I told it to my caseworker from Jewish Home Life care. Julia's reaction was, " Howard, all you had for dinner was grapes? Have you been missing meals? Do you have food in the fridge? Have you been eating? My answer was sort of a stutter Umm, Umm, Umm I guess not. I had started wandering again and did not realize it.
Julia (not her real name. I don't want to be sued for part of my $1.45 a day food stamp allowance) nailed me and knew exactly what was going on. I started wandering again. What is wandering? First of all everybody wanders once in a while just like everybody forgets things once in a while. For someone with dementia, wandering takes on a whole new dimension. I started pacing and wandering a while back. Usually I leave my apartment with a purpose or a plan and it just gets out of control. Last week, I was in transition to a new home health aide and did not have food in refrigerator. I would leave the apartment and go from supermarket to supermarket wandering up and down the aisles and buying nothing. I get confused and disorientated and sometimes don't even know where I am. Then I walk around to the local neighborhood restaurants and look at the menus. Sometimes I actually go in to a restaurant and sit down but leave before it's time to order. I can literally do this for hours and go home empty handed.
I used to go downtown and start with a single purpose in mind like buy pasta sauce from Trader Joe's. I would usually make it to Trader Joe's but frequently not buy anything and start wandering. This can become dangerous in summer because of not properly hydrating myself. It also can become extremely dangerous because when I get tired, confused and disoriented I have a tendency to walk out in the middle of the street without realizing it. Of course living in NYC, taxi cab drivers take aim for you when you do this. I can literally wander for hours or until I'm on the verge of collapse. The subways can be a safe haven for me. If I get disorientated in the subways, I can just sit in the train for as long as it takes till I feel regenerated. I have wound up taking the A train all the out to Far Rockaway where the train is elevated. That a couple hour ride. Welcome to the world of wandering.
I like to consider myself being like the Starship Enterprise wandering the city of New York instead of the Universe.
I never panic because I know that no matter what, I will find my way home at the end of the day.
I have set up parameters for myself now that I know how dangerous wandering can be. To minimize risk I now go downtown only early in the morning and make sure I get home no later than 1pm. Afternoons are always the worst for me and I need to be laying down or with someone. It is no longer safe for me to be by myself in that state.
People with Dementia wander and even though we quite frequently start out with a purpose or a goal in mind, it frequently becomes secondary. It is important for a person with dementia to know his or her limitations and to set up guidelines to keep themselves safe. We have discussed in Rivestone Memory Club what to do in the event you get lost. People reacted with, find a policeman, a bus driver, call a friend or relative. For me, I wait and figure it out. My family used to talk about putting me in an institution or group home so I have a fear of anyone finding out when I am lost or disorientated. I always figure it out and find my way or help magically appears. I do have a medic alert bracelet from the safe return program of the Alzheimer's Association. Though I have never used it, I highly recommend it's use for anyone with any type of dementia. Better to be careful!
Julia who I mentioned earlier is my caseworker for Jewish Home Life care. She is a seasoned social worker who meets with me once a month to help me with issues. I'm going to cut and paste a letter I sent to her earlier this week.
"Just want to thank for all your help and offering to help me with letting me know my options for long term care. It's a difficult topic and being my own caregiver I need to do whatever arrangements I can, while I still can. Also thank you for reassuring my I'm not alone and there are people to look after me. Even though I am lucky enough to have a vast network of caring loving people, the fact is I do spend most of my time by myself and most of my contact is mostly by internet.
I don't know if we want to take another shot at increasing my $1.45 a day in food stamps. They might lower it again. Thank you working with me on the appeal to try and reverse the denial of a rent freeze. I guess it was denied because they found my secret Swiss bank accounts as well as my Chalet in the Alps.
I have a new full time home health aide starting this week. Wish both of us luck :-) . I didn't even realize how I was starting to wander again until you brought up my food issues last week.
My Blog has now gone international with visitors now coming to visit from 10 different countries. I am also researching getting my blog translated into Spanish, Chinese etc. There is no question I couldn't be accomplishing what I am doing without the help of Jewish Home giving me a few hours a day to function fully. I'm hoping to show my appreciation by helping others".
Thanks again for everything,