managing alone time

[nona]

I am in my fifth year with bulbar onset ALS. I have very slurred speech, very limited arms, and some life left in my legs though no balance. II'm in a PWC and I live alone, on the first floor of an apartment building otherwise occupied by seniors (my immediate neighbor is 100 years old and he still cooks and drives!). I have caregivers in and out all day, a combination of family, friends, and paid caregivers that include a couple of fabulous nursing students. Typical schedule is someone gets me up around 7 AM (removes bipap and depends, washes my face, puts my glasses on me) and gives me a tube feed, then a shower and dress, then another tube feed and meds. I'm usually alone from about 11-2, when someone comes to feed me again. I'm alone again from 3-6. The evening person does my final feeding and more meds, then gets me ready and puts me to bed, including attaching bipap. A few times a week that person stays over but I am often alone overnight. I sleep on my side and don't move much. I wear a call alert button on my wrist.

So the reason I started this thread is that until recently, that daytime alone time has been fine because my bathroom is setup so that I can transfer alone, and that and my Tobii and my Red Sox are all I need. I don't need my bipap during the day, thankfully. However, the loss of my right arm makes it harder to get to the bathroom, and to get out of there once I'm done. I can use my left arm just enough for now, and hopefully my head array will get here soon. But even then, I need to plan for when I can't transfer myself. It won't be long. I was hoping a catheter would help but I will probably just have someone here during those gaps. That means someone in my space for every waking hour and I want to delay that as long as possible. That's a lot of hanging out just to help me pee once in a while.

So that's my story. I know we all progress differently but I don't think I'm alone in balancing personal space and safety. Thanks for listening and for your feedback!

 

[Nikki J]

Hi Nona I thought it did so moved and retitled as you see! I thought other PALS could chime in as well

Privacy and alone time are hard to give up for sure!

Do you have environmental controls? For lights, temperature , door? I am sure there are things that you and others do to make things work better and are likely worth discussing

100! Impressive! It does seem odd though when we, so much younger see or even are helped by independent super seniors. My 80 yo neighbor used to help me on trash day when I had my house!

 

[KarenNWendyn]

I am 100% impressed. And impressed you were able to coordinate all that help.

 

[nona]

One of my 80 y.o. neighbors occasionally does my feedings and she's on my emergency call list.

My Tobii talks to Alexa for some lights, and the Tobii can run my TV, but my building is too old for a smart thermostat so it usually stays at 70. I have a Toto washlet bidet that I can't believe I ever lived without, even before ALS. I can open my doors with my foot, which means I spend a lot of time letting the cat in and out.

 

[KimT]

You are amazing! I get it about alone time. I lived alone for quite a few years prior to and after my diagnosis. I ended up buying a condo with a friend and sharing space. It's not idea but he was my only friend who stepped up when I was considering going to the Gleason House in New Orleans. We each have our own bedroom space so I put a big screen on the wall. My bed that I had prior to ALS is adjustable so I watch night TV in there and I also have an Amazon Echo...mainly for music at this point. I love my bidet, too and wish I'd bought it years ago.