So Here We Are

So after 3 cancellations (one by the fam because of dad's weakened state, two by the doctor because of poor scheduling) we are at the hospital with dad who is being delivered into the operating room as we speak to have the fishula put in. On a subconcious level, I think I'm scared to death. Any procedure for dad is scary these days. Our family was divided as to whether the thing should be put in at all however dad's kidney doctor and the vascular surgeon told us that if he's going to be continuing dialysis -- which is a must to preserve his life -- then he needs to have the fishula put in. During the prep the nurse noticed the TB shot dad had on Monday showed positive, which caused some concern and so they had to do a chest ex-ray. Then they had a lot of trouble finding a vein in dad's left arm that was working -- he's been so poked and prodded over the last few months that the nurse explained she could insert the needle but then would hit scar tissue. Finally, after a bit of moaning and groaning from the nurse, and dad, she got the needle in. Now let's just pray really heard everything's goes well. Before they rolled dad away he said he wanted to put in an order for a T-Bone steak. His thinking this morning was fairly clear, matter of fact, by the time I got to the hospital this morning -- a bit late after getting stopped by our friendly neighborhood law enforcement for speeding -- he'd signed all the paperwork.

Okay let us pray: Dear Lord - We love dad, and he's been through so much lately, please carry him safely through this procedure and in the weeks and months to come. We pray that the fishula placement is successful and opens up properly so that it can be used within the two to four month window (hopefully two months). Help us get him back to him own home and in the care of his loving family where he can begin to heal. Amen.

Update

I truly do not know where to begin. So much has happened over the past few weeks. Okay first, in my last post in June I mentioned dad was in the hospital after a stroke and seizure, afterwhich he was discharged back to the rehab facility. More recently, on Saturday he was at Davita getting hooked up for dialysis. The nurse thought it best to call 911 because Dad's heart was beating too fast and blood pressure too low -- nose was bleeding still after he'd had a fall at the facility that Friday, early A.M. Apparently, the heart beat/blood pressure issues were signs of infection. And guess what? Dad has urinary tract infection, which in elderly people causes more confusion, on top of what he'd already been experiencing. Combine that with the antipsychotics the doctors are insisting he take to "manage his behavior" we have big problems. On top of that he has a necrotic right toe - same toe he had an ingrown toenail removed from almost two months ago which had been healing just fine. It took the doctors until today to finally call in a podiatrist, after 3-4 days of my commenting/insisting/yelling that it was getting worse day by day with the blackened dead skin spreading across his big toe. They kept assuring me that the area had been cleaned by the care nurse, and when asked if that would prevent the spread of dead skin -- hesitantly, with a whole lot of insincerity, the nurse assured me that it would. I didn't believe it. I'd done a little research and consulted with a friend/colleague of mine who is a former nurse and found that necrotic skin can not be repaired. And we all now know, with the exception of some of the medical professionals at Good Sam obviously as it took them 4-days and a lot of irritation on our part to get them to take the situation seriously, necrotic skin spreads rapidly if not treated by cutting away the dead skin to get to the healthier skin, and he would eventually lose his toe, foot. Hell no! And especially not due to their inability to act quickly. I yelled out my frustration today with Peggy, dad's assigned nurse, telling her I'd call back in a hour to see if they'd been able to get the hospital's podiatrist to examine dad's foot and threatened to follow up the call with a visit if nothing had been done, and what do you know...the podiatrist found time to visit and treat dad's foot properly. Why the delay in getting this done and why did it take my getting bitchy to accomplish it? Don't they care?!

We’ve also been informed by the facility where my dad had been staying that they would agree to take him back after his hospital stay, however if he continued to decline mentally they would have to report to Medicare that they could no longer help him and medical coverage would be declined by Medicare. We would then be on private care, and we just can’t afford that. He has a urinary tract infection, which they have to know causes confusion in elderly people, however they are trying really hard to ignore this fact as well as the fact that he’s on antipsychotics, Seroquel and Risperdal, which studies have shown not only cause agitation in elderly people but also have severe side effects which can cause death due to heart problems and infection. I’ve pulled information off the internet on studies being done in Europe on this very topic (BBC News). Guess what? Dad has heart problems and infection. Although this medication may work for a very few, it is not working for dad. I’m thinking it’s time to bring him home.

Dad, aka Father, Pops, G-Pops, Granddaddy

Two Saturday's ago Dad had a stroke, which also caused a seizure. We were on the way back to the house after dialysis. I was driving. I thought I was prepared for all emergencies and have in the past handled them with a modicum of calm. Not so on Saturday. I thought I was only a block from the fire station and drove like a fiend trying to get to it. Dad was flopped over to my side, unconscious after what felt like an endless minute of convulsing. I thought he'd had a stroke and I only had precious seconds to get help that could save his life. The station was further down than I thought so I made a U-Turn and headed back down Canyon road toward 112th, intending on driving all the way to Good Sam's emergency room -- however God must of tapped me on the shoulder to remind me to tap into the common sense I was born with. I pulled over to the side of the road and dialed 911 -- which isn't as easy as you'd think with a touchtone phone - fingers don't always touch on the right numbers especially when you're crying like a new born baby because of fear dad's lying dead next to me. When I got someone on the line I screamed the events of the last few minutes. The voice on the phone was calm, I was not -- until she demanded I get myself together and check to see if Dad was breathing. "If he's not breathing, she explained, "I need to tell you what to do next." That sunk in. If I didn't get it together, I couldn't save Dad. He was breathing. Thank God. The ambulance came within 2-3 long minutes. He was taken to Good Sam and held in critical care until two days ago, and then he was moved to the patient care unit. I guess they wanted to make sure he was seizure free. He's had an MRI without contrast and CT Scans with and without contrast and they can now confirm a stroke and the seizure that resulted from said stroke.

Dad's mental capacity has diminished even more so, and at first they said it could be toxicity from meds or outside source or it could be mental deterioration from whatever. To my layman mind, all that meant was they didn't know or care enough about what's going on with our 79-year-old Dad with multiple serious illnesses. But the tests now reveal that he has intracranial carotid artery disease, which means the carotid artaries are blocked and narrowed -- inpeding blood flow to the brain. Oh and last Friday we found out -- after questioning a nurse on why they're attire changed to full gear covering them from head to toe when entering Dad's room -- that Dad has the MRSA bacteria in his nose, which he probably got from being on the critical unit. Did I mention we just found out June 3rd, but they received the results back on May 31st? Really? Kind of stuff we'd like to know about.

We've had a helluva time getting any kind of useful information from the medical professionals around us. Is this typical? Why is it they don’t give the same level of care to a 79-year-old man as they would to someone younger and perhaps…curable? Do doctors wear belts under those white lab coats with carved notches that represent their successes? Seems so.

I'm tired, I'm scared, I weepy and sick to my stomach every day. I want to run away and at the same time crawl in bed and pull the overs over my head and stay like that for...like...infinity. I don't want him to be in agony, and I don't want him to leave us. Dear God I don't even know what to pray for anymore.

Help me. Help Dad. Help all of us. Amen.

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!