Those Three Words

When asked, "How do you do it?" A caregiver replied, "Love gives me no choice." When I read this on Community Knowitalz.com blog, it was a real moment for me. I said yes! That's my heart responding to that question.

A comment from an unknown person doing the same thing we're trying to do for Dad found the words as if pulled from my own heart. I really needed to read that today.

You see taking care of Dad is not a burden to me. Work is a burden, not having the benefit of a savings that would allow me to take a leave of absence and still be able to pay my bills is a burden (I could shoot myself for my lack of financial planning).

Taking care of Dad is an honor. Being present at such a crucial time in Dad's life, anyone's life, is a blessing for real. It comes included with all the I love yous and the I care about yous.

It just is.

'Til Sun Up

Dad had one other incident with his bag busting in the early morning hour. His call from the bathroom down the hall woke me up the second time. "I fell Angie. Need your help." When I stepped into the bathroom he was laying on his back amongst a pile of soiled paper towels he'd used to clean himself. Apparently the $75.00 shower chair, that he sits in to catch his breath after stepping from the shower, had collapsed on him. Surprisingly, lifting him from the back with my arms under his pits wasn't difficult at all. He'd lost so much weight over the past couple of months. Didn't appear to be any injuries. Once he was solid on his feet, I helped him finish cleaning up, and attached another colostomy bag. This time he was so exhausted he decided to lie back on his own bed instead of trying to make it back downstairs to the hospital bed. I had to wake him up an hour later to give him his epegen, and insulin shot. He didn't even bother to open his eyes. He was exhausted. When Jean arrived I dragged myself into the shower and just stood there with the water pummeling me, then began the process of mentally preparing myself for my other job. Long fucking night.

Here We Are Again

It's frinckin' early o'clock in the morning, Dad's bag busted. He called me in for recon duty before things got too bad. He got showered and remembered to close the shower door this time so no swimming in the pool of water on the bathroom floor, and the only thing needing my help was in gathering up the soiled clothes off the floor, spot clean the rug and help place the new sticky round thing on his stomach with the stoma inbetween -- centering that thing is the tricky part for him, then attach the new wafer, and colostomy bag is attached to the wafer, and we're good to go. I can go back to bed now. Oh but before I do I asked Dad if it was okay if we checked his glucose again, since it was ouch! 419 before he went to bed, which we think -- "we" are the nurses -- it's because he won't allow anyone to check his sugar mid day so he doesn't take any insilin. So now it's gone down to 118 -- Bravo! Much safer zone. He's back in bed downstairs and I'm getting ready to get back to mine and snuggle up to my dreams. I hope he's able to get right to sleep without too many thoughts rattling around in his head. Damn Boogeyman is always lurking in the dark!

Ciao.

At Night With The Boogey Man

I swear nights are the worst. It seems to be when all the bad stuff happens. The night before last, a yell from Dad standing in my doorway startled me out of a deep sleep and I almost shot up toward the ceiling. In my sleep world all was peaceful and divine and then Sgt. Dad, imitating a drill sergeant, bellowed at the top of his lungs, "Is it time for me to go to my pre-op appointment!" At 3:00 a.m. in the morning I can't even remember my name let alone comprehend an entire phrase with a question mark at the end of it. "Dad," I said, "What...whatdya mean? A pre-op appointment?" He looks back at me as if I'm completely lacking. It probably didn't help my hair had rearranged itself all over my head like something out of a Bela Lugosi classic. He scared the crap out of me though. Somewhat disoriented, I catapult (yes, I did), out of bed and run downstairs to look at the calendar on the fridge, which has all of his appointments penciled in. I'm always afraid I'll mess up on his scheduling. Wait...he has a preop appointment in June to have the fistula put into his arm for dialysis. Okay, I got it. But we're still in May. OK. "Dad, your appointment is in June. You've got plenty of time." He turns and heads back down the stairs, then looks back. "Are you sure?" He worries about missing appointments or not being on time. "I'm sure." I follow behind him all the way to his hospital bed and he sits down slowly, and rests his head in his hands. "I don't know why I keep getting time messed up." To myself, I say, I don't understand what's happening either Dad. And my heart breaks all over again, but I'm getting used to the feeling of it. He lies down and I lift his feet onto the bed and pull the blanket over him. "Get some sleep Dad." He released one really long sigh, and closed his eyes. I knew it would be awhile before he fell asleep though. He had a lot on his mind to work out.

A couple of nights before that he had a complete blow out of his colostomy bag and by the fall out I was able to trace his actions to the bathroom in his bedroom, and it was a mess, soiled bath cloths on the floor, along with soiled paper towels and about an inch of water on the floor. He'd taken a shower with the glass door open. After cleaning up the floor in the bathroom and picking up soiled garments in the downstairs bathroom where he'd headed when first realizing he had a problem, I changed the sheets on his bed, and helped him settle in. It was about 4:00 a.m. by the time I crawled back into bed, and two hours past the time my alarm went off at 5:30a.m. before I could drag my body from beneath the covers in order to get ready for work.

Nights are the worst because that's when fear is the most tangible. I think about all the decisions made, and wonder if they were the right ones. I think about all the decisions that are waiting to be made, and wonder if I will be able to live with them, and I think about mom and Kenny, and wonder how we've been able to continue without them. Everything is so broken.

I can only imagine how that awful, deafening silence is for Dad at night. There's so much happening to him and around him, things that used to be familiar and now practically takes everything he's got to work it all out in his mind these days. The boogey man is taking everything from him in bits and pieces. He's a spiteful bitch!

Dad

I took Dad to the Safeway last week after Dialysis to pick up a few things. I should have known better than to do this after dialysis when the process of having ones blood in the wash cycle, interchanging bad for good, usually wipes him out, but he wanted to stop so I did. Of course, without the benefit of a whole lot of energy, he stayed in the car. I hurried through the isles picking up some of this and a little bit of that until I'd gotten everything on my mental list. I'd just reached the car when the passenger side of the door opened up and Dad leaned out. "Angie?" he bellows. "Right here Dad," I responded as I opened the car on the driver side. "I want to go home," he says. Then he looks at me obviously peeved and says, "I was calling you, didn't you hear me?" I'm completely baffled and very disturbed. "Dad, I was in the Safeway store, how could I hear you?" He said, "Because I called you." He was looking back at me as if that made all the sense in the world.

Two months ago Dad was handling his own business, paying his bills, driving himself to doctor's appointments, giving himself insulin shots; now he can barely see or understand enough to fill the needle; can no longer drive at all; and so confused day and night merges into one really long morning, which means he's drinking coffee all day when before it used to be, perhaps, two cups in the morning, which is contributing to an increased heart rate. Sometimes he looks at me, and I can see his confusion and the moment when he's trying to identify who I am, in a mind that is betraying him.

When Dad was physically and mentally in a much better state, he told us he never wanted to be put in a facility; that he wanted to stay in his home. I’m trying with my entire being to honor that, to honor him. But it’s difficult, because a part of me wants to do what I feel is in his best interest, and then there’s the part of me that is driven to give him what he’s made clear to all that he desires most at the end of his life. To live and die in his own home, surrounded by his things, i.e. the flashback on the walls of family moments, his precious coffee pot -- "best smell in the morning is coffee brewing," he commented once while in the nursing facility -- his recliner positioned in front of the television so he can watch hours of the History channel, Andre Rieu, episodes of Friends, and a couple of Lifetime chick flicks on DVD. These things bring him comfort.

I'm terrified that fate is my enemy and something will happen to limit my choices to keep him where he's most comfortable. But I have to tell you, I'm a stubborn lady, and with all that is inside my heart, I will do everything in my power to keep him where he is.

At 79 years of age, Dad deserves respectfully, to live and die as he chooses. We all do.

God help me, to continue to help Dad and to honor his wishes.

Update

Sometimes writing in this blog after experiencing the actual events takes more energy than I have, but here's a try. I can't remember if I mentioned it in the prior post, but after being admitted back into Good Sam's after the stroke Dad went back to the nursing/rehab facility or "jail" as he now likes to refer to it. While there we experienced moments where one day he'd be so-so as far as his mood, to days (four to be exact) where he refused to even change his clothes or his adult undergarment. Taking him to and from Affordable Dentures for a fitting that day was awful, because he smelled strongly of urine and...Oh my gosh. I did everything I could before and after returning to the facility to get dad to change into fresh clean clothes but he was as obstinate about not changing as a child would be about taking a nap. When I mentioned it to the nurse, she said she had noticed an odor earlier and had discussed with him why a change of clothing was in order and he'd refused to change. She explained that they do not like to force the situation as their residents already feel as if so much has been taken out of their control. Although I understood what she was saying, Tuesday was dialysis day and I couldn't have Dad sitting in that recliner during treatment for three and a half hours smelling like he did. She promised the attendant would get him to take a shower. She kept her promise however the next day Dad insisted on putting on the same dirty, foul smelling clothes.

Dad's mood declined even worst over his stay in the rehab facility. I walked into his room one day and he was talking to his brother Charlie telling him that Debbie and I had changed his beneficiaries. He told Charlie, "I just can't see how they could do such a thing. But I guess they did it so that Angie could benefit." He'd also been telling everybody that we'd tricked him into going into the facility. To be honest the doctor suggested it to him and I was actually very surprised he agreed. Even though I know Dad's suffered a decline in his mental capacity with the stroke, it hurt like a mofo hearing him talk about us that way.

Now an update...Dad's back home and we hope, pray, beg for him to improve both mentally and physically. Physically, he's doing great--walking up and down the stairs already. Mentally, not so good. Sometimes he refuses to eat anything because he feels like what's the use. "I can't have hostess cupcakes," he said tonight. "So what's the use?" Or he goes on and on that hopefully the next stroke will be the one to take him out. Tonight his sugar was low--78, which concerns me but he said, “Well hopefully it’ll get lower during the night and…whatever.” I hate it when he says things like that. It makes me angry and sad...mostly angry. Okay, enough for now.

Past Month or So

The last few weeks have been ugly for Dad and all of us. He went into a skilled nursing facility for rehab on Thursday, March 18th and early the following Tuesday morning I get a call from Rainier Vista, the nursing facility, telling me that he'd fallen off his bed the night before. The nurse on the phone assured me he was alright and that they lowered his bed to prevent possible injury in the future, and had him sitting in a chair and would check in on him every 15 minutes. Apparently in these facilities they can't put rails on the bed because of WA state law. It was explained to me that nursing facilities are homes to some people and it isn't right to restrain people in their own homes, even if the illness is serious and the chance of falling is inevitable. So he fell, and when I got there they had him sitting in a chair. He complained of lower back pain and wanted to lay down but the assistant on duty said the shuttle would arrive shortly to take him to dialysis, which was a surprise to me because when he was admitted we were told they didn't have shuttles for the timeframe that he was scheduled 3:45 pm). So since the shuttle wasn't due to arrive for another two hours I told the guy I wanted Dad to lay in bed until the last possible minute to ease the pain in his lower back (probably the kidneys), to make him comfortable before he had to be carted off to Davita Dialysis center.

I hated seeing Dad wheeled onto that shuttle. His head was hanging over his chest and he just didn't look right. And he looked so forlorn. I followed the shuttle over to the dialysis center. I got there first, because the shuttle had to make stops to pick up other riders. About 15 minutes after I got there, it arrived, and Dad dropped off. I wheeled him into the facility and we were asked to wait in the lobby because it was still 45 minutes before he started dialysis. I didn't like the way he looked, something was off. His head was still hanging forward and he was not very responsive. I asked, "Dad, what's wrong?" And he'd mumble, "Oh my goodness, oh my goodness." I asked him if he needed a Tylenol and he said yes but when I tried to give two, the first went down with water and the second just sat his tongue. I said, "Dad, something's wrong and you're scaring me." He mumbled. "I don't want to scare you." I went through the wide door leading to the room where several people reclined in chairs plugged into the dialysis machine, grabbed a nurse and explained Dad's condition. I told her he wasn't acting right, something was wrong. The nurse came out and took his vitals, checked his sugar and said he seemed okay. She went back into the other room. Right after that Dad started moaning and shaking with drool coming from his mouth. I yelled for someone to help him. A couple people came running and agreed to call an ambulance after questioning me as to whether this was normal behavior for him. Hmmm...drooling from the mouth and shaking violently...really? When the ambulance arrived, the paramedics did there thing and one of the guys asked Dad to smile. Dad's face didn't change one bit. "Dad, he asked you to smile." Dad mumbled, "I am." But he wasn't. I-was-terrified. Vickie walked in the door at the same moment I felt my composure crumble. I was on the verge of reverting into a two year old and balling my eyes out.

The ambulance took him back to Good Sam where he was admitted for almost two weeks. He'd had a stroke. In addition, he was put on some new medication to treat an increased heart rate and low blood pressure.

And there you have it. But I'm not done because there's so much more to this update.