Beyond dementia

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.

Hello everyone! Beautiful day today…62 degrees. I had a fairly productive day today. Emailed my neurologist to ask a few questions about my last appointment. I hesitated because I didn’t take notes at my last appointment. I can’t take notes that make sense anymore so I need to take someone with me, which I didn’t to this last appointment. Oh…so that’s why I hesitated emailing him because maybe he already answered my questions. Oh well.

im not sure when to give up driving. I read that when you get lost. So far that hasn’t happened. But I have been driving and couldn’t remember where I’m going.

if anyone out there has been diagnosed and given up driving, I’d love to hear from you. Or if your loved one with dementia has given up driving…how did that come about?

hello everyone. I’ve been thinking about how my road to dementia started. At least the things Ive noticed over the last 3 or so years. The very first thing I thought was odd, was I was following my friend out of a room. I was saying something to her, and my talking stopped cold. No words came out. My mind was literally blank. I looked to my right and there was a “table” . But I didn’t know the word. I kept staring at the object knowing I needed the name of this object, but nothing came out. I went home still trying to come up with the word. I woke up in the middle of the night…and it finally came to me..the word was table. That kind of thing..word finding..difficulty continued more and more frequently. Fast forward to today..it now happens every day. Some days I chose not to speak to anyone because it’s frustrating. The other sign that began happening more and more was forgetting in general. I forget people’s names every day. My way of dealing with it is not calling anyone by name. I lost my sense of smell over a year ago. It really hit home when I walked into my friend’s house on Thanksgiving day…where she had been cooking for hours…and I realized I couldn’t smell anything. I do have a sense of taste though. These are the things I’ve been thinking about today. What am I grateful for? My cat Oliver. My apartment. Having good friends. I have a lot to be grateful for. Talk soon