Lewy Body Dementia's Advancing; What Are The Right Choices? Part 1

I saw it happening. Didn't want to believe it. Believed it. Shared with family. Can face when not facing Mom.

Her passage into the final stage of Lewy Body Dementia was like all other stages -- slow at first, highlighted by major changes, not always visible and often seeming to reverse. Even now we're not certain how far into this stage she's travelled.

Are we seeing the "new stage" when it begins? I think we're seeing it when we're really into it because the changes are more noticeable and seem to be more prevalent.

How far along are we on this journey with Mom?  Are we really slipping into the final final stages?  SNC Nurse Manager called and said she thought Mom was ready for Hospice. I haven't cried for a long time, not even since my husband's death have I really sat down and tears have flowed without any ability to stop them. I started to cry but since I was at work, I hid the tears until I could be alone.

We were unable to visit for two days and when we arrived, Mom was slumped over almost falling out of her wheelchair. I'd seen other residents this way. She couldn't communicate. Just two days had passed; she wasn't communicating as much, but she was talking before. She was eating or could be encouraged to eat; she even held and was able to finish both pieces of an egg salad sandwich.

Now she looks as though she's lost at least twenty pounds; why didn't I see this extensive weight loss? Was it because her clothes are the size they are? Some blame goes to the Nurse Manager who said Mom was holding at the same weight she'd been for so long just a few weeks ago.

Could Mom have lost that much weight without our seeing it happen? Yes, we'd both been busy and I now had a full time job and my daughter had a very busy part time job so we weren't stopping by every day. She was eating and we were always told she ate well even when we weren't there to feed her (at times when she slipped into this behavior) or encourage her to eat (when she could hand feed herself even if it meant picking up food meant to be eaten with a utensil, it was good to see her have this ability).

Hospice. It's such a final step. No matter what they tell you about people going "off" Hospice.....at Mom's age, this is most probably not going to happen. I don't like the limitations. If we accept Hospice we can't take her or send her to the hospital for an infection.

Mom and so many others have had UTI's.

I see UTI's as not something that has to be a part of growing older and incontinence. Am I being realistic?

If those who are responsible for her care checked her more frequently and didn't let her sit in her excrement or urine, I don't think UTI's would be so frequent. I see how short staffed they are; I hear the men and women beg for someone to take care of their needs. I hear an LPN tell someone to "be quiet" and "I'll get to you". Twenty minutes later she's still distributing medications and no one has helped the person who called out.

If Mom's Caregivers at the SNC really watched her as closely as we always did, they'd see the changes, catch the eye infections and other infections. Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, should and alert the Dr in charge the medication did not work.

We can't not help her. Mom's wishes have always been to seek medical help for infections. We'll make the decision and take her to the hospital -- even though she'd just been about ten days ago.

I'm walking the road with Mom and I'm not that far behind even though Mom had me later in life. I'm afraid for her. I'm afraid for me. I'm afraid for you.