Friday, February 22, 2013

FTD - I care, but don't care

It's 4:42am. I'm up in a panic state. I'm not sure how I can make this move. My life is so warped and I'm having such difficulties. I almost never leave my apartment anymore. When I do it's sometimes to have a cup of coffee, more likely it's just to walk out to the local stores to try and figure out something to eat. I walk in circles and just stand not being able to decide what to do. Then I go home usually empty handed, distressed. I hate living this way. I have a charity food service now. I won't have that when I move. Opening aluminum foil containers for food gets tiring. I'm thankful for the service, but each day seems to get rougher.

I'm no longer taking my heart meds on a regular basis. I just don't care and am hoping this nightmare will end. I'm in survival mode all the time and rarely enjoy life. My mind is slowly dying and there's no way to change it. I feel exactly the same as years ago, but then I think of how I live life each day. This isn't life I'm living. It's just existing while compensating daily for losses in forgetting how to basically exist.

I constantly hear from caregivers that there is no reprieve for them. I feel for them and realize there is no  reprieve for me from myself. Am I sitting here in the middle of the night feeling sorry for myself. Yes, I have my moments also. I can't remember a day when I haven't wished for death. Yet, I fight on and I try to keep myself from going into deep depression.

I keep trying to push my mindset and attitude to a positive place that it will be a new beginning in Florida and will work out. Then again, each day is such a struggle alone here in NYC. I'm barely making it here and keeping myself together. I don't trust myself and my actions so I isolate myself most of the time. I'm good around people in short spurts, but try to refrain from to much communal activity. Never mind saying and doing strange things, my thought process is totally screwed up all the time. I can rarely think soundly on a consistent basis. I'm not even sure what I'm thinking and where my thoughts are are coming from a good deal of the time.

I wrote last week I spend hours and hours at home just staring quietly and not doing anything. The TV is on, but I rarely watch it. Someone wrote to me that her husband does that and what am I thinking during those times. I'm not really sure. Seems like I'm just staring into space and not thinking anything. If I am thinking anything, it's possible it's scrambled or I forgot soon after. It's almost like falling into a meditative state or asleep while being awake. Once in a while I realize the movie I was watching on Netflix is over and I missed most of, sometimes all of the movie. Where was I? Don't know.

My most cognizant moments are when I'm writing. I try to think through moving, not moving or how I can continue. Trouble is my desire to continue is slowly dissipating with my inability to use my brain.

If reading this is depressing, be thankful your not living it. This is my life and this is as real as it's gets. I'll continue to do the best I can, but the struggles of living and losing your mind is a challenging end. 

Lately, people have been making comments on my hygiene. Seems easy enough to fix, but it just doesn't happen. I care, but don't care.

A friend of mine Laurie just left me at Cafe Buunni. I try not to depress the people around me. It's getting hard these days. Told her I was heading down to Tampa in a few weeks with the anticipation of moving there. I explained there's no choice since I've found nothing here I can afford here. The important thing is I move before the money I have for moving and a deposit runs out. I've never been to Tampa, so this should be interesting. 

At times I feel I have nothing here in NYC, but I do have good friends, lifelong friends as well as many people that care and check in with me frequently. It must be hard for them to watch me deteriorate. I'll miss NYC.

A friend sent me info about a nursing home in the Bronx last night. I'm so far removed from that ever happening. Call me selfish.

I'll be thankful for having my own place and a roof over my head. These days I appreciate the little things.



  1. Oh Howard,
    I read this twice and felt so much empathy for you. I am sure it is very frightening, yet I do not really know because I have not lived that side of this horrific disease.
    My spouse holds on to the fact that he will be in a better place than me someday, Heaven. But, that leaves me in a terrible place on earth. Once again no matter what angle you look at this from it is just awful.
    I try to tell myself that God has a plan for me when my hb dies, but in reality it is hard to see that far in the distance. So I just will refuse to go there now and try to get through each day. You have more courage than you know, just by writing this with such honesty.
    Thank you for sharing your story. I will always pray for you. John 3:16

  2. Thanks for sharing your story with us Howard. It really does make a difference. Maybe it will help others that are living with FTD. My thoughts and prayers are with you.

  3. Howard, I too had to read this a couple of times. I hope when you do go down to Tampa you are able to find a place and make your move. I am still impressed by your writings and I THANK YOU. Here is another good verse to read when life gets you down.
    Be strong and of good courage, be not frightnened, neither be dismayed, the Lord your God is with you whereever you go. Joshua 1:9
    Stay strong my friend. Everyone is behind you even if we are not with you in NY:O)
    Please keep writing....

  4. Keep strong and positive your a strong and kind individual. God is always on yourside. When one door closes the other opens.

  5. Okay, Howard-- So you express how I feel sometimes-- how it IS under the surface for me. And, for me, just packing for a vaca. gives me such anxiety, as do deadlines due to finances, such as you are facing with your moving situation. One idea-- if I pretend to be leaving on a Saturday-- yet it's Sunday my boyfriend and I are leaving to visit his daughter in Colorado, for instance, I can pressure myself to be ready a whole day early then go to his house for a sleepover and just relax on Sunday. An entire day to rest before an arduous trip, I found, was SO flipping indulgent a thing to do, and SO helpful! (Actually, I had the departure day screwed up! But it worked out to my benefit, my ineptness, that time)! It might help you, as well though, to get ABSOLUTE necessities accomplished first. Prioritize, leaving the smallest concerns for last, as well as things others may be able to help you with. Tell them "You're my friend. I NEED your help, please", so they'll get the sense of urgency. Ask each person to help you organize your thoughts and business matters, just donating ONE DAY of their time each. Maybe with your friends by your side, elbow to elbow, you can keep focused easier, taking a 5-10 minute break very regularly. Have one big day, followed by a more restful day. Make organizational notes on texts to yourself. As soon as you think of a "to do" list item, write it down (in a text is MY way). Break chores down into four parts. Ask each friend if they can help you with "such and such" to get the ball rolling and start delegating. I have to have someone sit with me to help with paperwork, especially. I break getting up to go to the bathroom into steps, or eating into steps as well. Here, in Palm Beach County, FL, we have the" coalition for independant living" organization and "seniors helping seniors". Maybe a group like that in your area could help, during this terrifically arduous time for you. Maybe, as we have here, you could have your electric bill paid for you, one time (after receiving a final notice)-- by a community service entity (government subsidized) and that could buy you some time, due to the financial strain you are under. Here, we have a "211" phone number we call for referral information depending on our needs. My daughter is going to vaca. in Siesta Key, near Tampa this week. The low tomorrow is in the low 40's but highs for the week will be in the seventies. Once you get there you will enjoy the weather. Until you're settled in there, close your eyes, take a deep breath to relax you. It helps Marines when they are under duress yet need to functiin still. Play soft, gentle music, or no music at all. Eat regularly... do stretching and breathing excercises when you need to "break". I feel for you. Sleep or nap good. Watch America's Funniest Home Videos if you think laughing may destress you and help you to think better. And if anyone doesn't want to help you tell them they can kiss my butt!! 'Cause you are certainly deserving of assistance. "Do not be afraid for I have overcome the world". (Jesus wouldn't have said that if he didn't mean it). And... "One day, just as surely as I live, all the earth will be filled with the glory of the Lord". (It helps me to keep my chin up and keep on plugging). When you get to Tampa you can "be beside the still waters... and lie down in green pastures". "Focus Factor" supplements (pills) or gingko biloba pills may help you get through moving. It helped me to take a supplement during moving. Okay, okay, I'm going to shut up. (Writing is something I do okay at, too). WE ARE ALL PULLING FOR YOU, IT SEEMS. REMEMBER THAT! :)


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