UG!

Can I just say "I hate this disease!" It breaks my heart to watch my father deteriorate before my eyes!

When dad was first diagnosed with dementia, I used to wonder what it would be like...would he just wake up one day and not remember me? Now that we are in the middle of the journey, I see that it is a slow progression. We are at a very frustrating point in the deterioration. Dad's memory is continuing to get shorter and shorter, but his sarcasm is still very sharp!

It's 11:00 and I am the only one up, sitting out here in the living room with the lights out and the TV on while I do some work on the computer. Dad has gone in to his room to go to bed three times now. He is in his pj's and his dentures are already soaking, but he keeps coming out of his room with his flashlight looking for something. When I ask if I can help him, he doesn't know what he's looking for. Add that to the fact that I can barely understand him with his teeth out & he gets very frustrated with me. The last time he told me he was looking for something for his flashlight. Well, it can't be batteries he needs because it is working, so I ask if he's looking for a leather strap for it. (Dad has put a leather strap on every tool in his room. He has a bucket full of leather pieces and lacing that he uses to make and re-make straps for all his flashlights, tools and water bottles.) He tells me, "Yes, that's it." I take him back to his room, and when I open the door, there on his bed is the leather strap he just took off the flashlight! He tells me it's too short (because he just cut it in half with the scissors that are laying beside it), so I get out his bucket of leather strapping to get a longer piece. As I am getting the bucket out for him, I tell him it's late and he should probably put it all away and work on it in the morning. Big mistake!

Lately one of the things dad does, is take something someone else just said and remember it to be his idea. As I set the bucket on his bed and take the lid off, dad asks me what it's for. When I show him that there are longer straps in it he starts going off on me about how he knows what's in the bucket, because he's the one that put it in there. And that's where he got these laces to start with and that's where he was going to put them now, because it's late and he should go to bed.

UG! I was only trying to help! All I could do was stand there, bite my tongue and hold back the tears. I hate this disease!

I should add that usually when dad has been sharp or mean he is also quick to apologize. And every night as I turn down his bed and get his denture cup ready for him, he tells me how grateful he his for me.

Funny How One Thing Leads to Another...

Dad has always had two pairs of glasses...one for regular wear and one for reading. While he was living with Suzy, she started getting two pairs of each so that when he misplaced one pair...I told you about the black hole in his room...she would have a back up pair until the lost pair was found.

In November, dad's main pair of reading glasses had become lost and had not yet been found before he also lost the back-up pair. It was about time to get dad's eyes checked anyway, so I took him to America's Best for an eye exam and to get glasses. Shortly after the optometrist began, he told me it looked like dad has the start of cataracts and he would not be able to help us. He explained that I should take dad to an ophthalmologist and that any new prescription he would give me now would probably change once dad had the cataracts removed. I explained that we really needed to have some glasses for now, and that it was worth it for me to replace them later. After completing the exam the doctor said he was surprised that as he was checking dad's eyes there was actually improvement when adding lenses. I guess usually adding lenses to a person with cataracts does nothing.

In January when I took dad to the ophthalmologist, the doctor said he does have cataracts. The doctor wanted dad to take a Field Vision Test before scheduling any surgery, so we scheduled a Field Vision Test for two weeks later. The results of the FVT were irregular, and showed possible problems with dad's optic nerve.

Because of the results of the FVT the doctor ordered a CT scan. Dad had the CT scan in early February. We had to wait a week for the results though because the doctor was on vacation. When he returned, the ophthalmologist called to say that the CT scan also showed some irregularities. He said there were some patchy black spots throughout the brain, which is often a sign of cancer. He recommended that we follow-up with dad's primary care physician.

Yesterday dad had an appointment with Dr. Dorus, his regular doctor. Dr. Dorus also did not like the results of the CT scan, but he didn't seem to want to use the "c" word. He ordered blood tests and a bone scan in order to get more information.

I just received a call from Dr. Dorus' nurse, the blood works looks okay. One of the levels they check for signs of cancer is the PSA (whatever that is), and dad's has been consistently a little high. Dr. Dorus has never worried about it though because although it is a little high, it has always remained the same. According to the nurse today, dad's levels are staying the same. Hopefully this is a sign that these irregular tests are nothing to worry about. We will go ahead with the bone scan next week just to be sure.

Please keep dad in your prayers that all goes well for him.

Sweet Dreams...

Lately dad has been sleeping later into the day. For years now dad's sleeping schedule has been off. He stays up until all hours of the night and then sleeps until noon or later. When he first moved in with us, we would turn out lights at 10 p.m. and start heading to bed and he got into a better sleeping pattern. That didn't really last very long though, and lately it's been as late as 3:00 p.m. when he wakes up...and he still goes back for naps.

About a month ago when he came out of his room about 20 minutes after I had checked on him sleeping, I asked him how he'd slept and he told me he hadn't been sleeping, but was in talking to mom...mom has been gone for six years now. When it happened we were the only ones home, and I forgot to tell Eli about it later.

Then during the Christmas break, we were remodeling the main bathroom and were using dad's bathroom while the toilet was removed. We would quietly sneak in and out of his room being careful not to wake him...surprisingly all the banging didn't wake him either.

I guess once as Eli was passing through dad's room he had a similar experience, and dad wasn't all the way awake but seemed to be very coherent. That's when Eli told me his theory.

Eli thinks that in dad's dreams he is the dad I grew up with. That he is able to understand and do the things he is dreaming about and everything makes sense, so that's why he's been letting dad sleep longer. Why wake him up to the state of confusion he lives in.

Remember the Easy Button

Most Saturday evenings when I tell dad that tomorrow is Sunday, he lays out his church clothes so they will be ready in the morning. I will tell him, "Church starts at 9, so I'll wake you up at 8 o'clock." Then Sunday morning when I go in to wake him up, he changes his mind in favor of more sleep.

Our ward's meeting time changed to 11:00 a.m. for 2011, so I thought getting up for church would be easier for dad...he still prefers his sleep. (Remind me later to tell me our theory as to why dad sleeps so much) The usual routine is that we all go our meetings & either Eli, me, or both of us will come home and check on dad between meetings. If he is awake when we check on him during Sunday School, then we have him come back with us to Sacrament.

Eli had meetings today after church, so the boys and I beat him home. When we arrived, dad was still asleep, so I decided to take advantage of the free time to take a nap. At 4:00 Eli called up to me. I thought it was to wake me up, so I asked him to let me sleep another 1/2 hour. Then he informed me that dad had been awake for about an hour and a half, but had not yet eaten because his teeth were misplaced.

Ever since he slept with his teeth in about six months ago, I have got in the habit of going into his room at about 9:00 p.m. and telling him it's time to start getting ready for bed. Them I pull back his sheets, lay out his pj's, and get his denture bath ready. Last night I fell asleep early and forgot to go set things up for him.

When I went into dad's room and asked Eli where he had looked, he replied , "I thought I'd looked everywhere, but was obviously wrong because I haven't found the teeth."

Three people in dad's room looking for teeth was at least 2 too many, so I asked dad if he thought he could eat some oatmeal without them, and got him set up eating breakfast.

The last time he misplaced his teeth, after looking in every drawer, nook and cranny...even his shoes, I sat down in his chair and decided to try and think like him. Just as I was thinking that he had to have put them nearby, I saw them in one of those desk organizer cup for pens. He had placed the teeth inside the pen holder and then placed a smaller paperclip cup on top of them. The time before that they were in a drawer.

Of coarse this time I went right to all the usual places, but no luck. I even looked in some places twice! Then I decided to check the drawers "one more time" and there they were! He had put them in his shaving cup, filled it with water, and placed it inside one of the bottom drawers on his dresser. He doesn't usually use those drawers, so I had not checked them. Next ime I need to remember to check the easy places first...and not overlook the drawers he doesn't use.

The Many Faces of Dad...

A Door is a Door...

Eli and dad were recently at Utah Valley University's library with Tanner, checking out movies. While waiting for Tanner, dad needed to go the bathroom; so Eli decided to go along.

Dad was quicker then Eli, and as dad was washing his hands couple of students were also washing their hands. When dad was done, he was a bit confused by all the doors and asked the two students which door went out. After pointing out the correct door to dad, the two students started making fun of dad. While they were laughing, Eli (still in the stall) "politely" informed the two students that dad had dementia and they better pray that when they are 82 they don't have to deal with the same issues.

After Eli told me about this incident, I realized that when dad asks where his room is if we aren't exact in explaining what door goes to his bedroom, he get confused. He sees the doors to the pantry next to the door to his bedroom and doesn't know which one we are talking about. Dad's memory loss has been a very slow process, and he still does really well but incidents like this kind of open our eyes to how dad's mind works and how we need to be helping him.

The Black Hole...

Things in dad's room have a way of disappearing. It's really kind of mind-boggling. Dad will have something in his hand and go in to his room, then come out later asking if anyone has seen whatever it is he was carrying.

It's funny, when we were down in Oceanside in August, Suzy asked me if dad's room still has a black hole in it. I had to laugh!

Yesterday Eli & I took dad out to lunch for Veteran's Day. Half way through lunch I noticed dad was wearing his reading glasses. When I asked him where his other glasses were he told me his didn't know. Eli said he had come out of his room wearing his reading glasses in the morning & when he went looking he couldn't find the other ones. I told him the regular places to look...hanging on the lampshade, inside his scripture case, and in his sock drawer are most common.

When I got home from work I saw dad was still wearing his reading glasses, and Eli told me he had been unable to find the other ones. Thinking to myself, "why is it always the mom that has to find things?" I went to check all dad's hiding places. I looked everywhere, even under the bathroom sink. No glasses anywhere...I did find some pants that I'd searched all his drawers looking for the other day though! I even went back in at bedtime and double checked everywhere. Still no glasses.

Today when I got home, I half expected to see dad wearing his glasses. Nope, still no glasses. There is an eyeglasses store in Orem called America's Best that sells two pair of glasses starting at $69. What a great idea, I can hide the extra pair for when dad misplaces the ones he usually wears. I went online and made dad an appointment for tomorrow. I was thinking it will be nice to have an extra pair, but we will probably end up waiting a week for the new ones to arrive.

It's my turn to teach Relief Society this Sunday, so I was getting my books together to come up to my room and work on the lesson, when I got an impression to check dad's dresser one more time. I had already checked in several times, but figured once more couldn't hurt.

Dad has lots of pictures and other trinkets on his dresser. As I was looking around, I started picking up the pictures & looking behind them...thinking, "there isn't room here for a pair of glasses." Then I noticed dad's watch case. It's a vertical jewelry case with a glass front and three padded dowels the size of a watch band for holding watches. Down at the bottom of the case a piece of glass caught my eye. Dad's glasses! I guess when he was putting his watch away, he placed his glasses in there too. One more place to add to the list of hiding places for lost stuff!

We will still keep the eye appointment tomorrow, but at least now dad can wear these glasses while we wait for the new ones.