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.

A Caregiver's Tasks - 5

List five:
Drive really quickly to the adult day center
where kind people are paid
to be nice to him,
to stimulate him,
to feed him,
to make him laugh,
to help him feel valued
and
to give me a few hours break.
It's almost 9:30am and
I'm off to "work."

Revision to Caregiver Tasks - 2

On taking the shower / for example, today:
(Imagine all of this going on as I am also trying to get ready for work.)
Guide him into the bedroom
Ask him to remove his clothes
Find him sitting in the office
"I can't find my shoes."
You just took them off; they're next to the bed.
Guide him back to the bedroom.
Now (said really sweetly) please take off your shirt and socks
He sits and begins with his socks
Go looking for him because he is not in the bedroom
Me: "Where are you?"
Him: "Where are YOU?"
Find him sitting in the office one sock on and one sock off
Lead him back to the bedroom
Help him remove his socks and clothes
Lead him into the bathroom for his shower.
Whew!

A Caregiver's Tasks - 4

List four:
Encourage him to walk downstairs to leave
Reassure him that both cats are safe
Help him check his pockets for tissues
Direct him into the garage
Show him the passenger side of the car
Help him get into the car
Adjust car temperature so he doesn’t complain
Remind him to fasten his seat belt
Get music playing
Readjust car temperature so he’s not too hot/cold

A Caregiver's Tasks - 3

List three:
Insist that he eat breakfast
Cook and serve the breakfast
Upstairs to brush teeth
Give him needed brushing materials.
Explain why brushing is necessary
Turn off the water when he’s finished
Brush his hair
Help him find the toilet
Get small packs of tissues for his pockets
Put drops in his eyes

A Caregiver's Tasks - 2

List Two:
Make sure the water is the right temperature then
Tell him his water is ready for a shower
Lay out his clothes
Check to be sure he is dried off
Give him the deodorant
Remind him where his underarms are
Help him find the toilet
Guide his legs & arms into his clothing
Show him the tube socks so he can put them on
Help him find his shoes

A Caregiver's Tasks - 1

List one:
Remind him to take his medicine / am and pm
Put the pills in his left hand
Turn on the water; hand him his cup
Help him find a Kleenex
Help him find the great room
Give him a cup of coffee
Tell him what day it is and what our plans are
Get him another cup of coffee
Suggest we move back up to the bedroom
Hand him his razor so he can shave

Not really silence

Living with someone who has Alzheimer's Disease can be much lonelier than living alone.

Activities of Daily Living, they're called

Sometimes daily activities are just too difficult. I awakened this morning to my husband’s call of “Where are you?’” I was in bed where I’d been all night. He wanted to know who the other “people” in the house were. No one.

Later we spent time trying to help him remember an old friend from college whom his sister had mentioned in a phone call yesterday – no luck.

We spent more time discussing why I was desired by many men and how that made him worry. I reminded him that most of my good male friends were either married or gay and he replied, “Oh yeah. That’s a good thing for me to remember.”

I suggested a walk. As we circled our cul-de-sac, he started right down our neighbor’s drive way – he tends to walk about 10 feet behind me; fortunately I keep looking over my shoulder to check on him or I would have lost him in the yard next door. I sped after him. He didn’t want to come back up to the street but finally agreed.

The walk went fairly well for a sweaty July day.

Back home I asked if he’d like to shower; he said yes and went to the great room. I suggested he come upstairs. He said he wanted to “wash.” I let him sit there for a few minutes and then came back and said “Come on upstairs.” He said ok and started to take off his socks and shoes. Next he stood up, holding his socks, and walked into the kitchen. He was so disoriented. I picked up his shoes and led him to the shower.
Sometimes daily activities are just too difficult.

Walking alone

This morning we drove down to Faust Park for our walk. I helped Bob out of the car and was trying to get him to see the building that houses a beautiful working carousel and where our oldest daughter and her husband had their wedding party.

Boom! I'm not watching where I'm going, trip over one of those cement parking dividers, and hit the ground hard. I felt a crunch in my right shoulder and side; for a minute I waited thinking I might have broken something. Fortunately I didn't; I don't think. I might have bruised one of those top ribs. No biggie; I'll be fine.

Funny / pathetic part of it? As I'm lying on the ground and trying to get up, feeling some pain and panic, Bob is standing above me looking all around toward the sky; he's still trying to see the building. "Bob, could you give me your hand?" He does, but it's like a wimp hand -- a hand to hold, not to lift; a fly wouldn't be helped.

By this time a young man (well, maybe 30) who'd been helping his wife get their little kid into a hiking harness comes running over and helps me up. "Are you ok?" Yes. "Are you sure? That was a hard fall." Thanks. I really am fine. I reassure him and he goes back to his family.

Meanwhile Bob is standing there trying to figure out what's going on. "Did I hear someone say 'Bob'?"
I told him there were lots of people around and we should have our walk.

I forgot about Alzheimers

Trying to catch up on a few posts:

One morning in March and I'm trying to get some errands done before dropping Bob off at daycare and getting to work myself. I know not to rush him, but he can sense when I'm watching the clock. He'd seemed especially slow moving in dressing and getting out to the car.

After we shopped at Target, he got confused about which car: he tried to get into a white pickup; I drive a blue Buick. Finally I got him to the right door, but while attempting to push the unlock button, I hit the danger/caution button and the car started honking! He stopped, looked up, and said angrily in the direction of the rest of the parking lot, "What an idiot!"
I explained it was my mistake and he continued grumbling as he got inside.

As we were driving away, Bob began, "Nancy, I'm not sure about us. We're not doing well."
I replied, "Bob, I think we're doing just fine."
Him: "No. We disagree and then people honk at us and everything goes wrong."
Me: "Don't you think it's just the Alzheimers?"
It was quiet for a minute and then he said, as if in awe or epiphany, "I forgot about the Alzheimers."

I wish I could just forget about the Alzheimers.

Not my fault

Most of what happens to us in life isn't to be blamed on anyone or anything; stuff happens. Accidents are accidents. Since the Alzheimer's victim is constantly losing skills and knowledge, he must always feel ... guilty.

Thursday we were getting ready for our day when I grabbed the brush to straighten up Bob's hair and found a blob of shampoo on top of his head. Thinking he'd forgotten to rinse, we headed to the kitchen sink where I saw that he'd put shampoo on but had forgotten to do anything else.

"Oh, you just forgot to wash your hair."
His response, "Sure, blame it on me."

Illogical thinking works!

We were on the plane from Newark Liberty Airport home to St. Louis on the last leg of our trip from Scotland. It had been a long and difficult traveling day for both of us, but especially for Bob.

I leaned over, patted his arm, and asked, "You OK?"
"No."
"What's wrong?"
"I'm worried about this plane."
"It'll be just fine. We're heading home. No problems."
"I'm still worried."

I let it drop and went back to reading. Sometimes all you can do is just worry.

A few minutes later, he leaned to me and asked, "Who's driving this plane?"
"What?"
"Who's driving this plane? Do we know him?"
I assured him that it was a good professional pilot (even though I'd noticed that when he made pa announcements, he sounded like one of my 17 year old students.)

Another few minutes, "I really mean it. Who is driving this plane?"
Don't ask me why, but I replied, "Not to worry. Remember, Bob, my dad was a pilot during WWII."
"Oh, OK."
He was fine the rest of the flight.
I have a feeling that my dad will have quite a career in a variety of professions :)

The Kindness of Strangers

We spent 10 days in Edinburgh, Scotland this holiday season 2009 with our two daughters and sons in law.

In Edinburgh because of the ice and snow we found ourselves often taking taxis for Bob’s safety. Early on the morning of January 1 we taxied to the airport. Our driver had to park a bit away from the door for various reasons. He insisted on walking us all the way inside so he could help with the luggage and Bob.

Checking in at Edinburgh airport for the flight home, we learned that our flight would be delayed enough that we’d miss the scheduled flight to St. Louis and they had already rebooked us on the two hour later plane. Nice, but it was a full plane and the reservation guy said they were not able to give us seat assignments. In despair I said, “But those are the people who get bumped; my husband has Alzheimer’s.” He studied his computer: “I’m sorry I can’t get you seats together.” Me: “I don’t think he can fly if he’s not next to me.” “Let me see what I can do. I’ll find a supervisor; I’m sure we can make this happen. I’ll catch up with you at the boarding gate.” He was as good as his word and found us there to give me seats together and wish us best of a 2010 and ask if I needed anything else.
Finally at Newark and waiting for our luggage after a long delay, the bags finally arrived. I had to push both of them plus pull our carry-on; I told Bob “Let’s go” only to look back and see him 40 feet behind me just standing bewildered; he did not respond to my calls to him. A woman near me stepped up and said “I’ll watch your bags; go on.” I gathered him up and was able to go off pushing our luggage.

As we moved toward customs, a man walking by fell into step with me. “Did you have a good trip? We saw you on the way over; we took the same flights.” “We had a great Christmas. Our daughter lives there. Thanks.” “You are a courageous couple to try this. Good luck to you in the new year.”
Clearing customs we took our reclaimed bags to recheck them for home. At the end of a loooong line and wait the airport guy looked at the tags and said, “St. Louis? Take them right over to the middle slot.” Seeing me try to gather all the bags and Bob up again, he said, “Oh wait. I can do that for you.” He took the two bags and sent them on their proper way.

Finally we had to take the airport shuttle from concourse C to concourse A. Of course, the cars were crowded and I had nothing to hold on to despite the recorded warning: “The train is about to begin. Be certain to stand securely and hold on.” I knew we’d go down but I held on to Bob’s arm to try to steady him. Off we went, a young man behind Bob immediately put up a supporting arm behind Bob’s back and a woman in front of me took my arm to help me. Just seconds later as the train steadied, a young couple gave us their seats.

Thanks to all of you, unknown folks; may the world pay you back for your kindnesses.