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And Life goes on.

Posted Jan 09 2009 4:39pm
Okay, so before I launch into the frantic goings on of these past few days since Daddy's passing, I want to fill in the gaps of what happened before...when he was still at that damned VA facility and I was searching for another place for him.
So...I think I left off with me veto-ing Villa. I ended up touring a few places, including a place called Country Villa in Modesto (see, I told you a lot of places have the name Villa in them!) and one called Kiernan Village in Salida. Between a zillion phone calls with that lady Theresa from Patient's rights and many other places, I had "other" people communicate with that a-hole Ackerman and the now jerky Robin. I refused to return any of their calls.
There were many disagreements and miscommunications before I finally said that either Kiernan Village or Country Villa would be okay. Kiernan Village is only an "assisted living" facility, which I really didn't think could handle him, but the caregivers seemed to understand what my Dad's needs were, it had a wanderguard system, and it was close by. Country Villa is a Nursing/Rehab Center, and I thought it may be better suited right off the bat, but because he didn't have Medi-Cal and had the CEPS payee program, they weren't even sure if they could take him.
Longer story short, and days of phone calls, Kiernan Village came through. But we'd have to go pick Daddy up at the VA, because he suddenly "wasn't eligible" for transport like before (even though we'd have to pay for that transport anyway). What that was about, I don't know, but after talking to the director of Kiernan Village, we thought it was better that someone he knows picked him up to lessen his anxiety. I was a bit nervous about going to the VA since at this point, with everything said and done with Whackerman...I can honestly say I didn't completely trust myself to do or say the right (or calm) thing if she felt inclined to brow-beat us one more time with her hormonal personality disorder.
I had already brought all my Dad's belongings to Kiernan Village the day before we picked him up...I wanted everything "just so" when he got there. December 4, 2008, my brother and I went to the Menlo Park VA Geriatric Psych Ward to get Daddy and bring him to Kiernan Village.
We got there, were buzzed in, and waited in a hallway near a sitting room while the Nurse tried to find Daddy's Nurse and his things. I caught a quick glimpse of a woman in the office with Whackerman's name on it...I was confused, thought it had to someone else, and kept walking. I watched all the patients in that sitting area, all of them mentally affected in some way, and COMPLETELY overlooked that my own father was sitting right there. As we waited, Whackerman walked by us. I'm not sure she knew who we were because she looked at my brother and said "helloooo" in her trashy accent...that's how I knew it was her. I didn't look at her until she passed us. Wow. I've got to say that for someone with SUCH an ego, I expected her to be some sort of goddess. But no. She looked more like an Oompa Loompa with mousy brown, extremely thinning hair and a serious thyroid problem. We couldn't help but laugh. Such a miserable, horrible, liar of a troll. Now I see why.
The first Nurse finally came back, bringing our Dad near us. He didn't seem to realize who we were, but when he got close enough to me, he started crying. He looked so incredibly pitiful, his hair was long, his eyebrows were unkempt, and apparently they said they'd had a "clepto" in their midst, because Daddy didn't have any of his own clothes on. Daddy was walking okay with our assistance, and he was talking fairly clear and in full sentences. Brother went to use the bathroom before we left and Daddy asked who that guy was. He wasn't sure if it was my husband. When I told him it was his son, he started crying. Sigh.
So we headed back, stopped for some lunch, got Daddy a haircut, and brought him to Kiernan Village. I had gone through the huge bag of meds we were given upon his discharge...and there were dozens. DOZENS! I couldn't believe all the nonsense they had him on. Drugs to calm him down, wake him up, to combat the side effects from other drugs...unbelievable. I had Daddy off ALL his meds before he went there, and now they had him on 3 times the drugs I had weaned him off of.
He seemed pretty content with Kiernan Village, and we assured him we were close by and would be over or talk to him daily. We showed him around, got him settled, and left.
Over the next few days he suddenly spiraled. The Director, Ray, let us know that Daddy was refusing to eat or get out of bed. Because I know Daddy does that sometimes, even once a week, I told Ray to wait a day to see if he perked up the following day. He didn't.
On Decemeber 11th, 2008, Daddy was taken to the ER, they did tests, and found that he was in complete renal (kidney) failure. The Doctors said they can only assume it was due to all the drugs they (the VA) had him on, namely the cholesterol med Simvastatin...apparently kidney failure isn't an uncommon side effect? My God. I had fought with Daddy's Doctors for years to get him off Simvastatin, among others...he did NOT need them, his levels were always well below "healthy" levels...but no, they argued that the benefits outweighed the risks. How can that be, especially with his diagnosis? His life was limited...and even IF his cholesterol or blood sugar or any number of other things spiked...what is a better way to sudden heart attack/stroke, or by lingering aimlessly like he inevitably did? I know a few people in my support group whose husbands have things like aortic aneurisms...and under normal circumstances, they would have surgery. But with dementia, they had to come to the unfortunate decision that going by aneurism is far kinder, so they've left it alone.
Such a horrible reality.
So, day by day in the hospital, Daddy got a tiny bit worse. More than half the time he wouldn't open his eyes, and he couldn't really move, but he was still eating...and still getting extremely agitated with the Nurses. He yelled and screamed at them when they were trying to clean or move him. Lewy was definitely in full effect because some of the things he said were regarding things and people at least 30 years ago. Or he wanted to "get out of the helicopter now", or go get his wallet out of the glove compartment. He even asked to get the car keys of a cousin's car...a cousin that has been in a semi-vegetative state for about 15 years.
They did dialysis 3 times before we had to make the decision to not do anymore...since if dialysis was his only way of staying alive, it would fall into the "being artificially sustained" category, and Daddy did not want that. So the dialysis stopped, and the hospital searched for a suitable Nursing/Rehab facility to discharge him to...he would be on "comfort measures" which is basically Hospice. We knew the end was near.
They said we needed to go sign him up for Medi-Cal to make sure we could get him placed quicker...that a place called Country Villa could take him if he had Medi-Cal (the same one I toured). So my brother, my two kids and I headed to the Medi-Cal office one day after visiting Daddy in the hospital. Over 3 hours of sitting in the Medi-Cal office later, we were told Daddy was approved for emergency long-term care Medi-Cal. That place was, to say the least, scary. It would be a whole other entry just explaining the hilarity that ensued at the Medi-Cal office, but anyone who has ever been to one can imagine, I'm sure.
Word came that Country Villa accepted Daddy, and on December 18th, he was moved there. There was a little bit of nonsense involved as far as paperwork being signed...the Director was not that sensitive in understanding or caring about the reasons we didn't want to sign his paperwork. I already knew from past experience that if you do not sign as anything other than his "agent", you WILL be sent the bills and held accountable for absolutely everything. Not knowing what I had already gone through in the past 3+ years, maybe she just thought I was some bratty kid, I don't know...and I know she thought that about my brother because she didn't mince words sharing that opinion. I had to assure her that we had no malicious reasons, and that my brother not signing was because he didn't want to end up like I've been the last 3 years. Who would, I mean, it was hell.
What annoyed me was that when my Dad had been transferred from the hospital to Country Villa, the hospital failed to share important information...such as regarding his Medi-Cal status and a few medical issues. I got it all resolved, but it's just so annoying when people don't do their job and you have to do it for them.
So Daddy was at Country Villa, and day by day he was slipping away a little more. Everytime I went there, I had the intention of telling him it was okay to go, that we understand, and that there were lots of people waiting for him whenever he was ready. But anytime I tried to get that out, I crumbled. I did ask him if he saw my Mom yet, Papa, or his sister...and he just fluttered his eyes, no real response.
I brought him one of his favorite ice creams everyday, and he'd eat about half of it. He slowly stopped being able to swallow food and they even added thickener to his water.
Maybe this sounds silly, but it was the day he refused to swallow his ice cream that the reality of Daddy dying hit me, and I knew it was just a matter of days, if that.
Over the course of the next couple of days, I went there sometimes twice. My brother and I would go, and sometimes I would head back over, and just sit with him and read for an hour or two. His O2 saturation levels had dropped to 75% so they'd put him on oxygen. He wasn't responding to any stimuli. He was getting so thin and frail, and due to the fact that he wasn't even drinking any fluids at this point, his tongue was like a hide of leather.
One evening I was there, I tried putting a few drops of water on his tongue and I thought I would have a heart attack...he started choking on it. Two drops of water caused him to gasp. I never tried that again.
Though I had already made phone calls and sent a check reserving a burial plot, we still had to go to the local Mortuary, pick out a casket and do the paperwork to cement all of his final wishes.
I had almost forgotten that he would need clothes, and that shopping trip just killed me. I was in a complete stupor worrying about what size, what color I should get, and whether he needed underwear? For a good day after that shopping excursion, I was a drained, mindless mess.
The afternoon of January 4th, we had made the very difficult decision to take him off the oxygen. We were getting mixed information about whether this was prolonging his misery. This was the same day that, when I returned on my own later, I got the words out. I told him how sorry I was that he had to go through all of this, and that anytime he was ready to go, we understood, and that we all loved him very much. I told him I got him a place right next to Nany and Papa, and that Shirley (his sister) and Mommy (my Mom) were waiting for him. I thought I would die saying these things. I gasped and shook and used half a roll of toilet paper in the bathroom blowng my nose trying to get these words out, but I did it. Sigh...
The next morning a Nurse called and said she wanted to know why we did that...taking him off the oxygen...that she didn't agree with our decision...that the oxygen was only keeping him comfortable...and that if he showed any sign of struggling to breathe and we insisted on keeping him off the oxygen, we'd have to meet with Nurses, the Social Worker, and an ETHICS COMMITTEE.
No, really, I don't feel bad enough already, make me feel worse. Thanks.
We were already on our way to see Daddy anyway, so we told them to re-instate the oxygen when we got there.
His eyes were glazed over and he was just not there anymore.
My brother and I stayed quite a while, then went to eat and I took him home. I was going to go home myself and that's when this nauseating brick hit my stomach and I went back to the Nursing home. Looking back, I think that maybe by the time I got there the second time, he was really already gone, but that his body still had to go through the process of completely shutting down. Of course I'll never really know for sure.
I am still not done making phone calls, even though realistically we don't have that much family left to call.
We have all our arrangements made for our flights, and Daddy was flown to Roswell yesterday. I went to the Mortuary early and "approved" how they groomed him. Hubby came with me, thank god, because it was like seeing Daddy die all over again. The person who prepared him really did do a good job, but it just wasn't my Dad. It didn't look like him. I truly realized, looking at him then, that it wasn't him. You'd think by now that I've seen enough death to come to a concrete conclusion already...but it wasn't until I saw my Dad there like that...that I think it cemented my belief that we go on from here...and that was just the body he had used during this particular lifetime. There is just no way that was my Dad. No way. It wasn't.
He had already vacated that body. What he really was had just left behind its shell, like when a snake shed's its skin.
Nothing now will ever convince me otherwise.
Oh, and before I forget...
I have obviously not been shy about naming names and ratting out facilities in this area that should be BOARDED UP...but I need to publicly state that Country Villa in Modesto was GREAT. Two Nurse's in particular...Sabrina and Nicole...they did a wonderful job taking care of my Dad. And just overall, I must say that I had a really positive experience with Country Villa and ALL their employees, and wish that more places were like them. They were compassionate and sensitive to what we were going through, and my Dad's needs were promptly and carefully taken into consideration...even when we weren't even sure what to do. I am extremely grateful that we had a good experience to walk us out of this nightmare.
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