I'm sorry I've been not available for a few weeks. My mom became increasingly unable to eat her food properly over the last few months, and as we hit September, started to refuse food or drinks of all kinds. This was not unexpected as her Huntington's Disease progressed, but it really threw me emotionally when her nursing home confirmed we were at that point.

Around two weeks ago, I was asked if I wanted to consider a feeding tube for her, and given that she had known this was a possibility and made her opinion on the matter VERY clear, I said "No."

I was able to use her Neurocare Unit room as a hospice of sorts, as we settled in for 7 days of her refusing food and fluids, and only saying yes to medication for her pain. She was very focused and peaceful through most of it. It was obviously a very difficult time, but I am honored to have been able to fulfill the promise I made to give her a comfortable death with family at her side when she chooses to let her life be done. My mother passed away last Friday at 11:35 pm, at the age of 66. My journey with her had many highs and lows, but my love had no limits.

I can't believe September has crept up on us already! I went on a road trip with my husband and my best friend a few weeks ago. The car ride was 10 hours long. I can't drive anymore, so hubby has to do all of it. I had to put many pillows around and behind me, and also ban air conditioning in the car unless the internal temperature was over 75 because it hurts so much when the cold air blows directly on my body. I enjoyed the trip and visiting with my friends. I hadn't seen them much at all since Covid started because it's often not safe and they don't put me at risk just for a visit.

Sometimes I'm amazed that my husband has stuck with me for so long given the fact that he would happily live in a refrigerator and I would happily live at over 80 degrees all the time. We make it work by having separate bedrooms. It's very important when you are "thermostatically incompatible" like we are.

What do you think of the list? What makes you feel good?

There are some great blogs written by both caregivers and those who experience dementia here.

WHY YSK- Many people practice mindfulness and meditation as part of their lives, and some would like to but feel like they don't have time to sit down and meditate properly. Once you've gotten used to doing it as a part of your daily activities, it becomes easy to simply take a few breaths and gain some peace from your everyday existence. You don't need to wait for a time when you can sit and clear your mind completely. It's a nice bonus, but not necessary for living a mindful life.

I haven't shopped for a new phone for a while but I have to admit I'm eyeing the new foldables from an accessibility standpoint. I really miss the mechanical keyboards that used to be available on every phone. In the absence of that, I'd love to have the option of a full-screen keyboard on one side and still being able to view the context of what I'm typing about on the other side without everything shrinking the way it does on regular phones.

I feel like this is a common problem in neuro diseases. If only we could get an earlier diagnosis, we would have fewer people seriously disabled by these diseases at a young age, while they visit their doctors over and over begging for some sort of help.

AvaddonLFC, who used to be the Captain of this ship and coordinator of moderators available to help you with your concerns is no longer able to be part of this community, as he is now an Administrator at Lemmy.world. I'm very happy for him and also happy to take on the job myself. I want to make this community a welcoming place full of both resources and helpful, kind people. I know it's been slow here and you've mostly been on your own for a day or two.

I am not a mental health professional but I do have a new one starting as a moderator in the next few days and I have a few friends in the field. Going forward I will be pulling together some resources to add to a pinned post or the sidebar for everyone to use. If you have any suggestions for what to add, please drop them in the comments here. If you see any posts or comments that you feel are unhelpful or not okay, please report them so I will know I should take a look right away. I will be checking for rule-breaking posts regularly, and working with the mods on how to tighten up our rules to make sure they cover what they need to.

Hello c/Reddit! As you may have noticed from the fancy “A” next to his name on his posts around Lemmy, our fearless leader AvaddonLFC is now an Administrator, which means he can no longer be part of our moderation team. I have agreed to take over his communities because I believe in what we’ve all been building together as a group. There will be no changes to the current rules or moderators, though you may see some new faces that were already chosen to join the team.

If you have any feedback on our rules or just want to tell us how much you’ll miss AvaddonLFC, this is the place to do it. (Don’t worry, I can take it!)

I am grateful to AvaddonnLFC for tbuilding this community and inviting me to join him as a moderator, and to my fellow mods (and hopefully the community) for sticking with me through this change!