An hour alone.

Katielu · January 27

Hello all. I find that I am frequently looking for time to myself, I have so many “ things” I want to do. So today, my DH decided to take a nap, he thinks the Aricept makes him sleepy, and off he went.

I have had almost 2 hours to myself, quiet, with the dog, in front of the fireplace. What have done? I went back thru some of my dementia books looking and highlighting better phrases to use when speaking to my husband, I researched future books to read on Dementia, and I sat here going thru this forum.

What am I doing? I could sew, I could clean, I could sort and organize, nap….. but the disease I hate, that has taken my best friend, is stuck on my mind and I just want more info. When will he get worse, how do I make decisions when he is still have aware ( but making bad decisions), what is the next step, how can I help him, how can I be a better caregiver, how can I be more organized so I can continue to work and care for him too… and on and on and on.

I am not looking for anyone to tell me what to do, I just sometimes feel like I am on an island on my own, and don’t know who to share with. My wonderful friends and family can’t really understand. I don’t know how to turn off the “ dementia train” running thru MY brain.

Cecil Jones · January 27

It trys to consume us. I find myself doing the same thing...just sad.

easy23 · January 27

I hear you! I do the same. i just hired a part-time companion for my husband so I can get some "me" time back. It's so hard.

JeriLynn66 · January 27

Peace be with you 🙏

ImMaggieMae · January 27

Katielu, I often do the same thing. It’s like we can’t ever get away from it. I wake up halfway through the night when he’s asleep and read medication studies, info on forums, etc.

M1 · January 27

Katielu, don't beat yourself up about that "to do" list. We caregivers get so little downtime, and what your soul is telling you is that you just need time to think and recuperate without taking on additional new tasks. We're coming up on two years in MC, and I still do the same thing: caregiving still requires most of my physical and emotional energy, even though we're not living in the same household any more. Glad you had that precious two hours, and hope you find more of them.

I used to pride myself on being a master multitasker, but not any more. Life is forever changed and changing.

Katielu · January 28

Thank you all, life “ on the island” is less lonely when others understand.

Bubalee · January 28

I don’t do what I love because I can’t get my schedule organized! I am a seamstress and sewing is my passion

DH has prostate cancer (S4)and I think MCI. I need to talk to somebody outside family. I have a lot or resources also but not using to help me. Hours listening to same stories! Repetitions galore and I forget ; and get entangled in arguments. I forget!!!! Dementia not diagnosed by Dr.;

fmb · January 28

I do the same thing, Katielu. In my case, I think it is my attempt to control the uncontrollable. Somehow I (illogically) think that if I learn enough about ALZ then I will be prepared for anything or at least able to better help DH in our journey through this hellish nightmare of a disease. Like M1, despite DH being in AL, most of my physical and mental energy is consumed by caregiving. I spent most of today with him (it is soooo boring there on the weekends). Counting drive time, that was over 5-1/2 hours. By the time I got home late this afternoon, I didn't want to do anything but put my feet up and shut my eyes.

Katielu · January 28

Fmb,

yes, I want to control it all, so I keep looking… oh well. At least I am learning along the way.

Dio · January 28

Hi Katielu, we get you. We've been there. Don't beat yourself up. You're doing what your natural instinct is driving you to do, to learn as much about this disease as possible and be prepared. Arm yourself with knowledge. When all's said and done, you will start focusing on caring for yourself, and should. I found that once acceptance sunk in, and I gave up wanting to control things I couldn't, it was much easier to cope with the situation. May you find peace in the days ahead.

Bubalee · January 28

https://alzconnected.org/discussion/comment/196167#Comment_196167

That is exactly how this high energy girl feels! Exhausted!

Windsock · January 29

Good morning Katielu,

I totally relate. Knowing I need time to just relax, spend time reading or some kind of meditation. But so often I’m researching this devastating decease instead. I’ve started to force myself to allow me time when I have that precious alone time.

LaneyG · January 30

Ditto ditto ditto to what everyone has said. Whenever I get some spare time it always seems to be researching, planning, etc etc. I used to be an avid reader. Can’t seem to focus anymore. I sometimes get a few minutes for the wordles quordle etc. I tell myself I’m working to keep my brain sharp which has become much more important!

An hour alone.

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