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.