Beyond dementia

so, I start off my day not knowing what day it is. Wait let me back up. At 6am I’m driving home to check on my cat and I realize that there is a lot of traffic for a Sunday morning. Then I think” wait, maybe it’s not Sunday.” So I think, “ok, well, what did I do yesterday” my mind is blank. I have no idea. So I try harder to remember. Nothing. Blank. So I get home and look at my dementia clock. It says Sunday. I question the accuracy. Damn. I check my phone, it says Sunday. I think it’s wrong, but they both can’t be wrong. I panic. Ugh

i feel grateful and am looking forward to this year. I kept thinking about how people get diagnosed so often when they are struggling so much. It made me feel grateful that I’ve been diagnosed with mild dementia instead of it being further along. Because of this, I’m able to plan my bucket list. That’s a priority for me. So I made the list, now I need time lines.

another priority thing for me is getting my DNR order notarized and printed on green paper…and make copies of all the legal work for Danielle, my death Doula. That goal should be accomplished tomorrow.

another priority is cleaning out more stuff from my apartment.

ill write more tomorrow to finish this.

i thought I posted with the other posts but it didn’t show up. I’m really not good at wordpress

what I wrote about was more about VSED, or voluntary stop eating and drinking. I plan to use this when I’m faced with needing long term care because of my dementia. VSED is a way of letting the dying process continue a little faster. I’ll die of dehydration. I live in a state that has Medical Aid In Dying but having dementia I can’t use that because although dementia is terminal, doctors can’t say it will be in six months. And when it will be, I may not be competent. So VSED it is. I have several books about people who have used it plus I’ve read a lot on line.

happy holidays…I’ll write more soon

so I saw my primary doctor last week. I told her what my specialist said…that I have mild dementia. I went on to tell her I went to an attorney and had legal paperwork drawn up. Such as healthcare power of attorney, durable power of attorney and living will. Then I went on to explain that I will not be put in a long term facility when I am incompetent. That I hired a ” death Doula” who will facilitate my passing using VSED. VSED is voluntary stopping eating and drinking. Basically through not eating and drinking you die of dehydration. So I asked my doctor if she would sign a DNR order for me. She agreed. So I’m almost done with all the legal stuff. I’m not going to start vsed soon..I’m still competent and can manage my own affairs. I’m just setting everything up to where when it’s time, I won’t have to jump major hoops. I feel a sense of freedom now. I don’t have to sit here worried about my future with dementia and being placed in a horrible, being dependent on others for all my needs. My background is that for 12 years I took care of clients with dementia, mostly in there homes. At the same time I visited my dad in a nursing home…he had dementia and he was very disabled from it until he passed. Then I visited my mom for 3 years, almost every day, in a memory care. She died not as demented as my dad, but bad enough. It wasn’t watching my parents go through it that was the worse, it was actually watching their peers deteriorate. When a person is in good physical health but have dementia they end up totally dependent, for EVERYTHING, with contractures and unable to talk. It is utter hell. Not for me.

Next I will write more about vsed. Take care

so yesterday I posted how I wrapped presents, boxed them up, and mailed them. And how I kept things organized so even if I forgot if I did something in the process I can rest assured that I may not remember but I know I did everything. Well….last night I went to bed not sure if I labeled an envelope and put it in a box. Ugh….then I woke up this morning thinking the same thing…did it get in the box??? After all my careful planning. Well plan b. Now I need to practice letting go and having faith that I did it correctly. Have a good day everyone.

thanks for your comment Traci. I always love hearing from you. Sorry it’s been so long since I posted. Been busy getting ready for the holidays. I’m mostly sticking to cards except for my nieces and nephews. I figured out a system where I wouldn’t get confused as to whose gift is whose and which box does it go in. I laid all the presents on the bed and I put a sticky on each gift with the name of the kid it goes to. Then I wrapped each package and put their name on the package immediately and put in the correct box…which also already labeled. I did all this and was able to go to UPS and mail them. It sounds like no big deal, but for me it is. I forget which present is who’s and then wrap it and forget who it’s for. So I think I solved the problem. But you know what? I’m done with Xmas this year. That wore me out.

Anyway, I’m going to put smart dementia. I think of it like a game. It tumbles me down thinking I’m down for good but I find a way to stand back up.

ill write again soon. Thanks for your patience . Take care

im recharging my battery today…staying home by myself. Yesterday I was celebrating thanksgiving with friends all day…it was great but also exhausting. Some of my time was spent at an assisted living where my mom resided. She passed away last February. But I made friends with some of the staff and residents, so I stopped by to say hi. It’s devastating to see some of the residents there. So many have dementia…some in the absolute final stretch. Being fed, changed, lifted in and out of bed. No quality of life whatsoever. I’ll talk more about this tomorrow and how I don’t plan to go that route. More tomorrow.

this holiday season, I’m Greatful for my friends and family. I’m Greatful for my doctors and their support. I’m Greatful for my best friend, Joan, who I think will stick with me to the end. And finally, I’m thankful my mom and I were able to turn our relationship around before her passing.

I hope everyone has a great holiday. Stay safe.

i never considered myself much of a traveler. In fact, I’m perfectly content staying home. But being diagnosed with dementia has got me thinking about my mortality and what would I like to spend my time doing, while I’m still mentally competent. My bucket list. Well, as I wrote, last week I spent several days in Santa Fe and I loved it…all of it. Being away from home, staying in a hotel, eating great food. Seeing get museums. Anyway, I ve thought of where else id like to go. I came up with 4 places. Bizbee Az, Flagstaff AZ, Taos NM, and Sedona AZ. Oh and a cross country Amtrak trip. So that takes care of my traveling.

what else on my bucket list? Balloon ride, helicopter ride, and…hmmm…I forgot. I need to write these things down.

this list is still a work in progress. Have a good day everyone.

I got back from a couple nights in Santa fe. I had a good time. Went to 4 museums and lots of galleries. The food was amazing. I felt frustrated because of my short term memory problems. I had a map with me and I would look at it and tell myself ” turn left on Palace then right on Water and go one block” so I would put my map away and a half block later, I forgot my directions. So I just ended up walking around and if I ran into a museum, I’d go in. Galleries were no problem because they are everywhere. Ugh…but I didn’t let it get to me. I didn’t do as much as I wanted, but , I enjoyed what I did do.

Next trip I’m taking a friend.