Wednesday, July 31, 2013

Ageless Spirit

Bob is doing much better after his fall. He can stand up on his own now and doesn't need the back brace.  He was quite feisty and lively today when I went to see him.

As always I made notes of things needed for him or his cottage. Ketut Krok said we could use another cable remote because Bob thinks it's a phone and puts it to his ear, pushing the buttons and then sometimes drops it. We've had to replace the remote once before.

We also have to fix the new clothes cupboard (see - because he's been banging on it, trying to open it and has already, after only a few weeks, damaged it. He doesn't like things locked that he can't get into.

We had tea and I'd brought a plastic container with separators and put little objects like clothes pins, tiny plastic dishes, and a ball inside. I just placed it on the table knowing his curiosity would get the better of him and he'd investigate it. What I hadn't anticipated is that he would try to put his peeled banana in it!

As I was about to leave I asked Ketut, "Now what was it that Bob needs?"

In a very intent and strong voice, Bob said, "SEX!"

Whew! Where did his hesitant can-hardly-hear-you voice go? We all got a good laugh out of it.

As I was driving home it occurred to me that as we age, as our bodies start to fail us, as we get wrinkles and spots and arthritis, our basic spirit stays the same. It doesn't age. This was a big A-HA! for me. 

When I see someone with old saggy skin who speaks with a shaky voice I will now look for the spirit inside, that same spirit that was there when they were twenty or thirty or forty.  It's why I feel forty-four and not sixty-six, why most people are shocked that their bodies look as they do when they basically feel as they always have.

"Bob's Spirit Shines in His Eyes"
Bob has always been a little risque, often bringing things down to sex or making jokes about it - in a cute way- garnering laughs from those around.  His timing and the way he answered with an emphatic, "SEX!" was typical Bob style.

During the time together today Bob said almost nothing intelligible and often spoke so softly I could barely make out the words that did make sense. He seems to be worried a lot about our 'stuff' and strangers who might come in and take things from us.  

And then out the blue, "SEX!"  brought the old Bob spirit into the open as a reminder that he is still in there. His brain is abandoning  him, his body is failing him, his life has pared down to a small cottage with a dog, four care givers and a wife. But inside, there behind the thick curtain of Alzheimer's, Bob's essence still lives.

Sunday, July 28, 2013


I was in the middle of three very stressful days trying to get orders out by their deadlines when I got a text message from Ketut, one of Bob's caregivers.  "Susan, Bob didn't sleep last night. There's something wrong with his stomach. Every time he tries to get up he moans in pain and grabs his middle. He can't get up without help."

I did not need to hear this news! I was at my whit's end managing my five employees, helping to get carving orders out, dealing with a high maintenance customer, answering business emails, and organizing Bob's food for the weekend. And on top of all that we were having Internet problems.

"Ketut, please take Bob to the clinic now! We need to find out what's happening. Keep me posted."  I sprang into into high speed, trying to organize everything so I could get to the clinic if needed. All the while I was thinking appendicitis or bad food or large hospital bills. 

Ketut agrees to get him there quickly and then tells me, "Bob fell in the shower two days ago and landed on his butt. He didn't seem to be hurt at the time. Maybe this is connected."

Now I was really confused.

The doctor gave Bob a pain injection just so he could examine him. He then sent him off for x-rays which showed no broken bones. His stomach was normal so food poisoning was ruled out.  It was surmised that he'd pulled a muscle or bruised a rib or some such thing.  As I have personally experienced with falls, everything seems Ok until two days later when places start hurting.

A back brace was wrapped round Bob and muscle relaxants given and he seemed to be much more conformable.  By the afternoon he was doing quite well, ate a big lunch and then two apples, although he still needed assistance to stand up on his own.

I thumbed through the caregivers log book and found the entry where he fell in the shower. Bob's circulation in his feet isn't very good so we have a Balinese masseuse coming once or twice a week to give him massages. Bob loves this. I read in the entry that just before he fell he'd had one.

As hard as I try to protect him, to think ahead to things that could happen, I just didn't see this coming. We're guessing that his feet were still oily and when he got into the shower, he slipped.

Now a new rule is in place: after every massage, wash Bob's feet in warm soapy water and pat them dry.  Only then can he take a shower or walk around. 

Tomorrow I'll buy grab bars for the shower and get a plastic bench he can sit on.  It's so difficult to foresee what can arise and endanger my husband.

I need a crystal ball! 

Sunday, July 14, 2013

Alzheimer’s Magic

I pulled the large bubble sword out of its sheath. “Hey Bob, look at this!” I called out as I spun around ending up in the middle of an almost complete bubble circle. He wasn’t impressed. 
I dipped and blew, this time shooting a cluster of bubbles in Bob’s direction. He reached out and popped one.  I was as excited as a child, filling the garden with iridescent orbs of all sizes and shapes. Bob said disparagingly, ”That’s for kids.” 

I’d thought he’d like this new toy. I was disappointed that it failed to please him. So it was with trepidation that I brought Bob a soft fuzzy stuffed dog with droopy ears and blond fur. The dog had a brown patch around one eye making it difficult to see it. Bob said with concern, “He only has one eye. Do you think he’ll be Ok?” I pulled back the fuzz and showed him, “See he has both. He’ll be just fine.”  His concern melted.

Bob Concerned About Buddy's Eye
“What shall we call him?” I asked. Bob looked blank. After a moment of silence that mutated into an unintelligible sentence he said, “He’s Buddy Boy.” Bob kept pushing Buddy Boy around on the table – not holding him or embracing him but he couldn’t ignore him either. 

This new gift had his attention. As we chatted he’d make a comment about the dog as though he were a living being and yet when he handled him, he did it like a toy. He seemed to be going in and out of reality and fantasy. He even asked, "Should we get Buddy’s hair clipped?"

I’d given Bob a stuffed shore bird several months before. The caregivers told me he carried it around and sometimes took it to bed. The bird is soft and small, not as fuzzy as Buddy Boy. And it seems he’s lost interest in the bird.

I first got the idea of giving Bob stuffed animals from an article on The Alzheimer’s Reading room.  The article told about Dotty and her toy bird, Harvey, with whom she talked and told things to that she didn’t tell her caregiver son – like that she had a headache. 

I considered this idea for a long time because I didn’t think my former deep-sea diving, water-skiing, hiking, man’s man of a husband would accept a stuffed animal. And as silly as it sounds, I didn’t want to be rejected by him. It’s emotionally hard enough being a caregiver and losing your soul mate to this disease.

Then I read one of Marie Marley’s articles about her Romanian soul mate and his surprising response to stuffed animals. 

I was so inspired by her words that when I saw this dog sitting in a rack at the supermarket, I knew it was worth a try. It was like magic.  My sweet husband softened and bonded. I just hope Daisy, his living dog, won’t be jealous.

You can read more of Marie Marley's stories on her blog:

(Please note that I can't get this address to link so you'll have to cut and paste.)

And one other note:  I'm not very tech savvy and just realized I didn't have a place for people to follow Alz World. I have now added that feature. If you click 'Join Followers' my new posts will appear in your 'in box'.  I will never share your address with anyone else.

Thursday, July 4, 2013

Caregivers Get Smarter

I had our monthly 'Caregiver Meeting' this morning with three out of the four men that care for my husband. They rotate who comes to the meetings since one has to stay with Bob.

We discussed Bob's needs, the cottage needs, and any thing else needing to be addressed.  Gusti asked, "Can we get a locking cabinet for Bob's clean clothes?" For years my sweet husband has  been obsessed with organizing, sorting, and going through things. Sometimes we can use that to our advantage as I wrote about in 'Tool Fool' (

Now he rips open the package of fresh-from-the-laundry clothes, depositing them in any number of places including the shower, the dirty clothes bin, out in the garden or even in the garbage.  Not only does this cabinet need to lock but it needs to be heavy enough that he can't move it.

We found this lesson out the hard way.  We had to strap the TV down to the table so he wouldn't cart it away and still to this day he continues to try to lift it. At least it keeps him entertained.....for awhile.

It's common in Bali to have a stove top but no oven. We have a light weight aluminum box oven that mostly sits under the counter, since the boys aren't bakers. They started using it instead to hide Daisy's treats from our ever hungry man-child. They added his snacks and apples or he'd eat them all in short order, not remembering he'd just had one.  I suggested they just turn it around so the door was against the wall but Ketut said, "Oh no, Susan, he sits on the floor and pulls the oven out."  And if there aren't any treats in the house he goes for the dog food on the floor.  If there are extra apples he eats them all - he's been known to eat five apples in a day.

What's so perplexing to me is that Bob has no short term memory but he remembers where treats are tucked away. This of course pushes the boys to find new hiding spots in a simple uncluttered cottage, not an easy feat.  I wonder if they can recycle old secret places after awhile or if he'll continue to remember them and if so why can't he remember anything else?

On Saturdays the boys pick up Bob's food for the weekend - we cook all his food at my house.  This is problematic because he often gets up in the middle of the night and raids the refrigerator. If the next day's food is in there, it's fair game. You can't say "No" to Bob, unless you want an argument you won't win. 

We decided at the meeting that I'd give them a small travel ice chest to put the extra food in along with some 'blue ice' to keep it cold. This can be stored out of sight high on a shelf for the night, and covered with a cloth if necessary, so Bob won't see it.

It seems in our attempts to stay one step ahead in Alz World, we become smarter, quicker, more flexible, trying to keep up with our large two year old. I don't say that in a demeaning way. My good friend, Margie, frequently babysits her two year old grandson and we chuckle about how similar Luca and Bob are. Except when it comes to bubbles - Luca loves them. Bob says, "Oh, that's for kids."