Respite

My last two posts have been a little negative and I feel bad about that, because things are usually pretty good. Having dad in our home has really not changed our daily routines to much...besides the fact that Eli now stays home with dad. When we go out now, if dad is not coming with us, we just have to make sure someone is here with dad. And if dad is coming with us, we just have to be sure to bring a bottle of water for him since he has no saliva glands due to having cancer removed from the roof of his mouth.

Shortly after dad moved in with us, we found Aspen Senior Care. It is an in-home health service that has nurses or personal assistants that come to peoples homes to help with various in-home health needs. We don't really need in-home health care services for dad right now, but wanted to find out what services were available before we needed them. While talking with Susan, from Aspen, about the services they offer she mentioned that in June they would be opening Aspen Senior Center, a Senior Day Center. They offer respite care for family caregivers. The daily activities are very similar to the activities dad participated in while living at Jamestown.

We drop dad off about once a week to give him an opportunity to have to social interaction and activities, and to give Eli a break to run errands and such. It's kind of nice, because they have a "drop in" option. This way we aren't committing to attendance and then dad ends up sleeping in and not going. Since dad was up and about pretty early today, we decided it would be a good day to go to Aspen. Here's a couple of pictures of dad with the birdhouse he painted as craft project.

"Hello"

Dad's sleeping habits are changing. He used to stay up 'til all hours of the night puttering around in his room and then sleep until about 1:00 the next day, but lately he's been saying he was ready for bed at about 10:00 and is quite often in bed by 11:30. He still sleeps in a bit, but is usually up and dressed by 10 or 11:00. Except for sometimes...the thing that's changed is that now on the nights that he is up late (last night he was up until midnight), he is also up early!

I had a hard time getting to sleep last night, so at 6:00 I called in to work and left a message that I would be late. Just as I was falling back to sleep I heard dad...he was up at 6:30 calling "Hello?" He forgets that this is my house and thinks we are at a hotel and calls out to see where everyone is. Sometimes I can tell him we are still in bed and he should try sleeping for another hour. Today when I called down to him he went back into his room, but was back out 20 minutes later..."Hello?"

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...