Minefields

So, I've been away ... mentally. Otherwise, my friends, life has continued.
Of course, Bob is deteriorating and much has changed and nothing has changed over the past four months, but I will try to catch up.

For now, here's how life has been:

Up one morning in early November in pretty good spirits.

We watched tv and drank our coffee altho’ I had to turn the news off quickly when they interviewed the woman whose husband was shot by Mexican pirates while jet sking on the Texas Mexico border; why is she on all the news shows??? Bob is already bothered by the cartels and wants me to agree that we will never travel to Mexico.

Done.

Time to go upstairs to shower and shave.

“I’m tired of shaving.”

OK. You want to skip today?

ForEVER.

Fine. Should I run the shower for you?

“I don’t need to.”

"I’ve turned the music on. Why not sit down and listen to it?"

No reply.

"I’m going to go take my shower."

“Good for you!”

I get the water ready and my robe, then look for him. He’s not in the bedroom with the music; he’s sitting in the great room and will not talk.

I have to shower; I still go to work if only part time. When I come out, he’s not on the couch. He doesn’t reply to my calls. Finally I find him sitting in the kitchen at the table.

In a really cheery voice, I say, “Oh, would you like to have your breakfast now?”

Nothing.

I go over and take his hands. I ask him to come on upstairs with me where the music is. He gets up but pulls away from me as I’ve been gently guiding him by his elbow.

He is lost. I can't stay with him emotionally at times like this or I will break.

We get upstairs, him: quiet and glum, me: fake merry sunshine.

Still no shower; let’s just change into clean clothes.

“I had perfectly good clothes and now they’re worth … worth … nothing!”

"These are good clothes but you wore them all day yesterday and last night."

"See. You can tell I like them. They're perfectly good."

I cave. Who really cares? They're perfectly good.

Today he said

"I used to love you, but not any more. You think you own me and can tell me what to do."
He almost bumped into the sliding glass doors as he looked for a way to leave our great room and "escape" from me.
That about says it all.

I hate Saturdays!

I hate Saturdays. They linger forever. I have things to do around the house, but Bob can do nothing so he drifts around following me, looking mopey, making me feel guilty for not sitting down and entertaining him.
Today I accepted that he "just wants to be with [me]" so I didn't let his shadowing bother me.

When I had some bills to pay and pants to shorten, I suggested we sit on the bed and he could listen to music while I worked. OK.

I came back with my sewing box and sat down.
He exploded, "Please (at least that) don't bounce around. I told you it hurts my eyes."
"I'm sorry. I had no idea. It's hurts your eyes?"
"I told you yesterday."
A bit more of that with him making little sense but me working to calm him and I suggested that I go back downstairs so I wouldn't cause his eyes pain.
"Sure. You'll be glad to get away from me."
"Bob, I'm trying to help you be comfortable."
"Can you talk any louder so all the people in this building..." he gestured broadly toward the bedroom ceiling and the fan "... can enjoy it. I'm sure they think we're idiots!"

It wouldn't surprise me if "they" do think that. I know we are.

What is anything really?

Life has been getting trickier each day lately. In addition to our regular feeding of the hungry, Bob's eyes continue to bother him (they're scratchy and dry) and he becomes unpleasant about them. He may be reaching the end of his ability to put on a happy face.

This morning a refusal to shave or shower came as a result of his being bothered when the eye drops ran down his cheek. Next he decided that he needed to see his cardiologist ... immediately. As I tried to find out why he felt this way, he told me that the nurse had told him to because once "you've had one heart attack it's likely you'll have another." He became angry when I mentioned that he hadn't had a heart attack.

Anyway I reassured him that he already had an appointment scheduled in February and rather than help him understand what February means, I turned on one of his favorite CDs and left the room; a bit later he was fine and willing to shave.

This disease demands that I keep the focus on myself. It's OK for me to become irritated with myself for lack of patience; it's OK for me to rant and rave internally about his little meannesses and his frustrating inability to understand. Those are ways I'll stay sane while I spend my time caring for him.

But, if I think of what's happening to him, I break up inside. How frightening not to know what Saturday is or to understand what the East Coast means or to remember his brother in law. I will be OK when this is over; I will be able to rest and I can think of him at peace and no longer struggling.

For him it will just be over.

Feeding the hungry

Either I'm going crazy or getting good at living in the Alzheimer's world.

Bob's been having hallucinations again; he did this several months ago but back then he could agree that they were not real. Not so now.
Today we had finished lunch when Bob said, "But what about those men? I think they're hungry."
My usual response, "What?" Then I said, "Show them to me."

As we returned to the kitchen, I thought about what I've learned: if the person with dementia isn't frightened by the hallucinations, then don't try to talk him out of them.

"Do you want me to give them something to eat? We have left overs from lunch."
"Uh, yes, uh, I think, uh, that would be ... good."
I set containers with left-overs out on the table. He asked me about something to drink so I added a glass of water.

I left the kitchen feeling charitable and he said, "I'm glad we could help them."

He is a dear man and a good human being.

My Monday morning

Where are the tissues?
Where are the cats?
Did you give that young man breakfast (the talking head on tv)?
Shhh, don’t talk so loud.
They got my juice!
Where are the cats?
Is the house locked up?
I need a tissue.
Where are the cats?
Who are those people over there (no one)?
I’m cold.
I guess if they were that thirsty.
Where are the cats?
Shhh, don’t talk so loud.
Why should we go for a walk?
Is the house locked up?
I can’t find anything!

The long good bye

It happens little by little and then all at once.

Like tonight I realized that I have become a nurse / companion, not a wife and friend. I make sure he takes his pills, eats properly, washes and dresses. I think about what makes him happy and contented. I subvert my own desires and needs because he is ill.

No longer do we have conversations even though we sit together with our morning coffee. Sometimes I watch the news and he catches half of a word "murder" or he hears a name and is sure we know the person, because we’ve heard the name so often, like Rob Blagoiavich.

Usually I don’t watch the news because I get frustrated with having to help him understand what is not understandable for him. The gulf oil spill concerns him deeply because of the possibility of sharks and rays.

We sit next to each other at dinner but I am helping him find what’s on the plate. Sometimes I pretend we’re strangers and I am being kind. We are strangers.

It happens all at once, you realize what you’ve become, and it happens little by little.