Beginning The End

I saw it happening. Didn't want to believe it. 

Shared with family. Can face when not facing Mom.  

Her passage into the final stage of Lewy Body Dementia--like other stages -- slow at first, highlighted by major changes, not always visible, often seeming to reverse. 

We're not certain how far into this stage she's travelled.

As we see the "new stage" we wonder when it began. 

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  since my husband's death have I really sat down, tears flowing without any ability to stop them. 

I started to cry, I was at work, 

I hid the tears until I could be alone.

We were unable to visit for two days. 

When we arrived, Mom was slumped over.

She was  almost falling out of her wheelchair. 

I'd seen other residents this way. 

She couldn't communicate. 

Just two days had passed.

Mom wasn't communicating as much; she was talking before. She was eating or could be encouraged to eat.

She 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.

She said Mom was holding at the same weight as always.

Just a few weeks ago.

Truth or fiction. We relied on whatever we were told.

Could Mom have lost that much weight without our seeing it happen? 

Yes, we'd both been busy.

I now had a full time job.

My daughter had a very busy part time job.

We weren't stopping by every day. 

She was eating we were told

She ate well even when we weren't there to feed her.

False, misleading, deceptive; not reality.

Meant to "pacify" members of "the family".

They "could" feed her?  It was obvious they were short staffed.

If loved ones weren't there, a "resident" was often "on their own.

Mom and others could be seen using their fingers.

Not able to use a fork or spoon.

From potatoes and gravy to veggies like corn or peas -- driven by the need to eat.

Tears come to my eyes even years later when I'm re-reading and feel so guilty, like I abandoned my Mom, even if I was working two jobs, trying to survive, desperately believing we would be together, the three women in the family -- again. 

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 watched her as closely as we did, they'd see the changes, catch the eye and other infections. 

Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, alert the Dr in charge the medication did not work.

We can't not try to 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 where she's travelled even though Mom had me later in life. 

I'm afraid for her. I'm afraid for me. I'm afraid for you.