Thursday, December 22, 2011

Keeping it real...

I'm not a fan of catch phrases, and I make an effort not to use them, but the title of this post says it well.  I've not written in a few weeks for several reasons.  Mostly, I've been too busy and too tired to write coherently when I finally have the time to write.  I've also hesitated to write because I haven't felt particularly positive lately, and I truly want to be positive.  And finally, I've struggled with articulating the reality of this disease...thinking that maybe if I just didn't put it in black and white, it might not be real.  But, I need to face the reality that this disease is marching spite of my trying not to see the decline in Billy.  

One of the many blessings I've received lately is to become reconnected with one of my good friends from high school and college.  Karen and I met when we were silly freshman girls in high school.  Her dad was our preacher in the church we attended, and we were good friends throughout high school.  We attended the same university and even roomed together for a semester.  After we graduated and went our separate ways, we sort of lost touch.  I knew she lived in this area, and we ran into each other several years ago at a Texas Rangers game, but we didn't really reconnect until Facebook made that so easy.  Karen read one of my blog posts one evening, and sent me a message saying it was like reading what she had been going through the past few years.  She had just placed her husband of 25 years in an assisted living facility.  We meet once a month for dinner and as much conversation as we can fit in.  Somehow it helps to know that she has been through these same issues, and she's still sane.  We were talking about the similarities of caring for a person with dementia and caring for a toddler.  With Alzheimer's, the skills just go in reverse, and like a toddler, you really can't let that person out of your sight.  Of course the big difference is that you teach your toddler, and eventually, they learn more and more.  The total opposite occurs with Alzheimer's...learning does not occur. I used to compare living with Billy to the Adam Sandler movie, 50 First Dates, but that doesn't ring so true anymore. It's not the same each day.  I realize that what he could do yesterday, he may not have a clue about today.  

We have a habit of eating dinner on our TV trays, and when I clean up the trays, Billy usually has lots of crumbs under his tray and chair.  This evening, he wanted to help clean it up.  I got the broom and dustpan, and he swept up the crumbs.  He got most of the crumbs into the dustpan, and then he just dumped them out on the floor again.  He struggled and struggled to get those crumbs on the dustpan, and I asked it I could help him. He was very quick to hand over the equipment, and I got it done.  On the other hand, I was so surprised a few minutes later when he realized the trash needed to be taken out, and he did that.  He also remembered where the liners were, got one, and put it in the can.  That amazed me because he rarely remembers where the liners are even though they remain in the same place.  

The biggest decline we see right now is Billy's anxiety and his lack of coping skills.  He's very quiet in the morning when I'm taking him to meet Terry, but if we go anywhere in the evening, he's nervous and irritable.  The drivers who bring him home in the evenings mention how nervous he is and how often he tells them how to get to his house.  Sadly, he doesn't always know how to get to our house. He argues about the direction I'm driving sometimes, and he tells me I should have turned before.  He warns me about stop signs about 2 blocks before I get to them. He grabs the handle above the side window, and he tells me to slow down. I'm really not that bad, but everything seems to be magnified to him.  My son-in-law is the most patient of all of us with Billy telling him he's going the wrong way, and giving him incorrect directions throughout any drive.  My daughter is the least patient, and I'm somewhere in between.  

About half (maybe less than that) of what he says is coherent and makes sense.  It may not fit into the current conversation, but it makes some sense.  The rest of what he says does not make sense.  He puts real words together, but we don't know what he's saying.  If he laughs, we laugh with him.  He often repeats the last word in his sentence as though it's just part of the cadence.  "I didn't want to go there anyway anyway." 

I fixed him a snack tonight, and he gave me a side hug and told me that I'm a great sister.  Sometimes, in the evening, he'll look at me from across the room, and ask, "Where's Kathy?"  I usually tell him that I am  Kathy, and he'll act like he meant the other Kathy - he has a sister named Kathy.  

Even though I've become accustomed to the madness, sometimes I hardly remember life before the Twilight Zone.  Those days when we had husband-wife conversations seem so long ago.  I miss having him as my partner and companion to laugh with and to just talk with. 

So that is the reality at the moment.  We will go to his sister's, Cindy's, on Christmas Eve, and he'll see his family that he sees once a year.  That should be interesting.  Christmas day will be spent with my family, and I plan to break up the day by coming home for a few hours.  I'll write about the holiday celebrations soon....praying for an unusually calm Billy on those days.  

Peace and blessings to all this season.  

Tuesday, December 6, 2011

Identify the Need

This past weekend was tough.  Billy's anxiety was beyond what I remember it ever being.  He started the day with pacing and questions, and doing everything quickly and jerkily (is that even a word?).  My patience was wearing very thin, and he sensed that, so along with anxiety, he was apologizing constantly which makes me feel guilty and irritates me at the same time.  His dependence on me increases weekly it seems.  He's forgotten how to turn the water to hot in the shower, so I get that started for him, or I just leave it running after I finish my shower.  He puts shaving cream on his face, picks up the razor, gets distracted, rinses off the shaving cream, and starts the whole process over again.  He turns the water on full blast and forgets to turn it off.  I put toothpaste on his toothbrush, and he does pretty well with brushing as he paces around the bedroom.  I put mousse in his hair for him because when he puts it on his hand, he can't remember if it's shaving cream or something else.  I hand him his deodorant, and he puts it under his arms.  I signal for him to put it in the drawer after that, or he puts it on his face. 

Today I took him to the dentist for a check-up with my own anxiety because Billy's teeth have always been bad. Many people with Alzheimer's have dental issues, and I've neglected that for Billy.  I've been so engrossed in dealing with the behaviors and the progression of the disease, I've just put the dentist on the back burner.  Not a good thing.  Billy has many cavities, including some underneath crowns.  He has an exposed root - don't know where that tooth is.  He needs root canals, crowns, extractions, and fillings. Insurance covers 50% up to $1000 a year.  The first procedure takes care of more than half of that.  Merry Christmas to the Knowles!  And the dentist mentioned his dire need for flossing and an oral rinse that is to be the last thing in his mouth at night.  That should be fun to add to the nightly ritual.  

When I reflect on the weekend, I know we had too much going on.  Friday night we had family at the house, and I'm sure he was as tired as anyone.  Saturday, we had something to attend in the morning, I needed to run errands, so he stayed with our son-in-law for a few hours in the afternoon, and that evening we went to a wedding.  This may be the last wedding I take him to. Social situations add anxiety for both of us.  Billy has lost his filter in many situations.  After the wedding ceremony, he looked at me and started to say something...."Do you think they have.....a...a...a...a place to pee?"  A bit crude, but he did get his message across.  We spend a lot of our time looking for restrooms no matter where we are.  This wedding was in a tent, and I was so thankful it was attached to a building that had a restroom.  He needed me to go with him, so off we went.  He was about the fourth person in line for the facility, so we had a few minutes to wait.  While we stood there he asked just about anyone who walked by if they knew where a restroom was. But he stammered around about it, so they would stop, and I would try to redirect him.  When we returned to our table, he introduced himself to the couple sitting next to us ... again. He ate his food, and when he finished, it was time to go somewhere else! It's sort of like he has severe Attention Deficit Disorder.  He's distracted easily, even in the middle of a sentence.  He'll start out talking about one topic, see something in his line of sight, and the sentence changes to that topic.   

When we attend social events, I spend a good amount of the time worrying about what he's going to say, whose clothing he'll point at and tell me something about it,  or he might just stare rudely.  His filter is broken or missing.  

As anxious as he was on Saturday, he was worse on Sunday.  He sat at the edge of his seat the entire day - just waiting to jump up anytime I got out of my seat or asking where we were going.  I did plan to attend a birthday party with my daughter while my son-in-law stayed at the house with Billy.  We went out for a late breakfast that morning, and when we started home, he kept saying he wanted to go to my sister's.  I assured him he could go there to watch the Dallas Cowboys game at 3:00. Andrew took him to my sister's around 2:00 because Billy was wanting to go so badly.  Around 3:45, I received a text message that my sister's house was Anxiety Central....could I please call and try to calm Billy.  I called and assured Billy I would be there by 4:30.  He called me at 4:00 to see what was taking me so long. 

I keep replaying things from the caregivers seminar I attended a few weeks back, and she kept saying that negative behaviors can indicate an unmet emotional or physical need.  This weekend, I tried to identify the need, and I truly couldn't identify a specific need.  He is a little less anxious when I'm with him, but it certainly doesn't go away completely.  He follows me around the house when I go from place to place, and that is just part of the disease.  I contacted the doctor on Monday, and she's making some changes with his medication to see if it helps.  I'm at that place where something has to change....I keep having thoughts that I can't keep doing this, and I don't really have too many choices.  Billy needs supervision and full time care like people receive in assisted living.  We don't have the means for that, and a skilled nursing home doesn't seems appropriate for him.  God is faithful and will provide relief and answers.  I need them. 

While listening the the young couple repeat their vows at the wedding we attended, I thought about our vows.  When you stand before God, friends, and relatives at a young age and promise to love and care for this person until death, you don't think of all that lies ahead.  And that's a good thing.  If we knew what we faced, we might all bail out! I don't regret making those promises.  I love Billy with all my heart, and I want what is best for him. I'm just conflicted on what that is.  Love and peace to you all.