My dad’s been going to the shop to hang out the past couple of days, which is not much of a deal, but night before last no one even bothered to tell me that he was going to be staying there overnight. Made for a very very stressful night without sleep for me, because I had no idea if someone was about to head home with him or what was going on. He was finally brought home around noon or 1 yesterday afternoon – just in time for him to get his pills a couple hours late.

Then last night my sister and her husband showed back up around 10 pm, hung out for a while, then she started looking for the keys to the car she had given mom years back after dad had his stroke. I was puzzled, but once I figured out what she had been looking for (had to ask her) I got the keys (which I had setting by my purse because I was going to be driving said car), and handed them to her. Turned out she wants to take the car and I need to clear my stuff out of it. As I write this that’s been done and they have the car and I am sitting here carless after having thought I had a car for taking dad where he needed to go and for doing the shopping. Silly me.

What the backstory is… after mom died – the day she was buried, we followed her to Anchorage in the white Cadillac. We stopped on the way home and I filled the tank so it would be ready when I needed the car in the spring because at that time the price of gas was supposed to go up still, so at roughly $5 a gallon I filled the tank in the Caddy.

As I was filling it Helen moseyed around and asked me what I was going to do with the car, because she had apparently heard that I had asked my brother about him driving the car when dad needed to go anywhere since I didn’t like driving in the winter and he lives next door. I’ve not driven much, it has bad brakes, I prefer the professional race car driver to be driving in icy conditions rather than me. She seemed to think I was giving him the car, I said to her, “You gave it to mom, I know that. If anyone other than Dad gets it it’d be you.” She replied with, “Oh no! It’s dad’s car, and I want you to keep it and drive it, I just don’t want anyone else driving it because they would ruin it.” We talked for a bit and I made it clear I would not drive it in the winter, I’m not a good enough driver to feel safe on the road with the lunatics that need to relearn winter driving every year, I’d wait for Spring then drive it. She seemed to have no problem with that, car was dad’s and I was to drive it so me and dad had transportation. She made a few hints I should drive some before the snow hit, but I never got the chance to and didn’t really care to drive until the brakes got fixed on it. So I left it parked for the winter.

I kept paying the insurance every month, faithfully, just to be sure it would still be insured this month when I could safely drive it. Car was parked, but I paid the insurance, because I knew I would be driving this spring.

Now, last night… she takes the car away from me. No forewarning, no comment, just searched through things for the keys and without a word on what she was up to took the car. I had to dang near pull teeth before she admitted that yes, she’s keeping it and I have to empty my things and mom’s and dad’s stuff outta it. At first she’d commented that it would be up here a lot so I could get things any time I wanted to, I chose to get stuff today since the car didn’t start last night. They were back around noon today with a wrecker and took it away.

They also have dad down there, which is the second night in a row he’s spent the night down there – in same clothing he had day before yesterday, sleeping on a recliner in the garage rather than them bringing him back home to sleep in his bed. I expected him to be back when they came after the Caddy, but they didn’t bring him home then. Called a while ago, nephew said he had no idea and would have his mom call me back, haven’t heard from her yet though. No idea when, or if, dad’ll be home. Which means he won’t get a chance to rest before I have to go to the Saturday Market deal in the morning to try and kickstart a new home based business to try and earn money to help make ends meet. They were supposed to take dad so I could go get that going, but I’m uneasy now after two full nights sleeping in a chair in a garage. That can’t be good for his health, but I have no way out at this point, I have space reserved (have for a couple weeks now) and everything, all I can do is let them keep him one more night and go to the Saturday Market and have dad brought home tomorrow evening.

I’m not amused at any of it, in case it don’t show. (And this is only the things I can growl about publicly – sheeeeesh).

So, this evening I’ll have my brother drop off medications, clothes and PJs so at least Dad has had a change of clothing down there and something more comfortable than corduroy pants to sleep in. Then I’ll get ready for the Saturday Market I am supposed to be at starting at around 8 or 9 in the morning.

I had planned to take Caddy up to it, now I will be figuring out how to get my quilting things onto my ATV, since my brother has other things he needs to be doing at that time.

Don’t ya just love family? No wonder mom used to watch Momma’s Family and Rosanne and say she watched because it made her feel like her family was normal.

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(And no, I’m not joking – they live upstairs of the garage and he can’t get up there, so he sleeps in recliner downstairs in the garage with the cars when he’s at her place. I don’t like but can’t stop it either cause he wants to see other peoples and they don’t visit him here very much – plus, they let him smoke all that he wants to, I limit him to a cigarette every half hour.)

There comes a point when you are a caregiver when you need to know when to just say “No”. I’ve decided that if someone asks about taking dad down to hang out at the garage today I’m just going to say no. He’s completely exhausted, has hardly woke up today even after he had spent all night pretty much sleeping (only woke me up 3 times I think).

As much as I like him getting out,k since it gives me a break and lets him visit with the people that never come to see him, I need to think about what mom would say if she was here and I know that she would not want him to be going anywhere when he’s this exhausted – so, if asked, I am going to say no.

It’s not like I needed another reason to distrust nursing homes, people should know by now that I would not put my dad in one for any reason.  It is the cure all that at least one of my siblings has suggested before, but me and my mom have seen what those places are like and I will never make my dad live in one.  Not after the abuse I witnessed in those places – in ones that were supposedly the best in the Western States.

I have known for some time that there was little attention paid to family caregivers and the nation’s senior population, but that was never made so pronounced for me as it was when my friend sent me a text message to my cell phone a little while ago telling me to tune into Olberman because “Olberman talking bush & nursing homes in a bit.”  My first reaction was to send her back a note “About time someone pointed out Bush needs to be in a nursing home.”  Joking aside I went off and tuned in in Keith Olberman and listened to his “Still Bushed!” segment where he was expressing surprise at this law Bush signed in as he was leaving office.  You know that sent me straight to Google.  What I discovered was less than encouraging when it comes to just how much people care about seniors in the United States.

On September 7, 2001 the Committee on Oversight and Government Reform warned us about this. 

Bush Administration Nursing Home Proposal

According to news reports, the Bush Adminstration is considering a substantial weakening of the federal protections for nursing home residents. This proposal would reduce the frequency of nursing home inspections and eliminate automatic sanctions on substandard nursing homes. Rep. Waxman has written to the President to explain why this proposal is seriously flawed.

This was accompanied by a link to the letter that Rep. Waxman had wrote concerning the proposal.  In this letter to the president, Rep. Waxman stated that “I am extremely troubled by the substance of the changes that you are considering. I believe they would substantially weaken protections for vulnerable nursing home residents.”

How can people be so uncaring about our senior citizens?  The people that are in nursing homes are, without a doubt, the greatest generation that ever lived.  We all know and accept that their generation did nothing less than save the world and now – how do we repay them? We shunt them off to nursing homes to be forgotten.  Then we tell those nursing homes that the Federal government will forgive anything they do to the men and women we entrusted to their care.

We need to tell the government that this is not acceptable.  Our parents, grandparents, great grandparents mean enough to us that we want their basic rights protected.  Our husbands, wives, brothers and sisters, aunts and uncles…. our family, our friends… they mean enough to us that we want them to get the best care possible.

Letting nursing homes regulate themselves is not acceptable. Rep. Waxman stated in his 2001 letter that in a three year study only 5% of all nursing homes complied with federal nursing home standards for all three years.  5%.  Even as scary as that is, it is nothing when you read the next line of Rep. Waxman’s letter: “During the same three-year period, more than 56% of nursing homes had violations that caused actual harm to residents.”  HARM, not danger, harm, they caused harm to their residents – while they were being watched! Imagine, if you have a strong enough stomach for it, what happens when they are not under scrutiny.

People complain about the cruelty of how cattle are treated in slaughter houses – why do they never complain about how our elderly are treated in the very nursing homes that should be taking care of their every need?  Why is it that 56% of the nursing homes can cause harm to their residents, while being observed, and no one cares?

Look at your mother, your father… look at your spouse, your children… every one of them might one day, for one reason or another, be placed in a nursing home.  Is 44% enough odds that your loved one will be taken care of.  And that is only the odds they will be taken care of while someone is looking – President Bush has said that we only need some to look in every three years.

The new rule also designated state inspectors, Medicare and Medicaid contractors, as federal employees – shielding them from providing evidence in private litigation.  The explanation for why this was necessary seems to be that state employees were too burdened by requests for information.  Excuse me? Shouldn’t it be a clue that something is rotten in Denmark just by the fact that they were too burdened for information from people seeking help in finding out what happened to their loved ones?  If the state employees in charge of inspecting the nursing homes are being bombarded with requests for help in finding out what is going on in there, then there is something going on in there.

Maybe we should make a law that all state and federal information on nursing homes be public information and freely available online or in local libraries?  If we can all see what is going on, then maybe there will be less happening.

What is happening? You would be sickened to find out.    With just my own father, and the brief amount of time he was in nursing homes after his stroke:

• Fall in bathroom and ignored.  My dad fell in the bathroom and pulled the emergency assistance string for help.  He also happened to have a radio for talking to me, he called me when he needed to go into the bathroom and I told him it was too late for me to come assist him, to call the nurse.  Half an hour later he called me again – no nurse.  A little while later as he was calling me again the nurse showed up and took him into the bathroom and he said he would call me back when he was out of there. I found out later that he had fallen, pulled the “help” string, and then left laying on the floor for TWO HOURS while the light at the front desk and outside his room beeped for help.  We had him out of the place as quickly as the paperwork could be pushed through.  Well… actually… they would not let us have him (excuse me!?!?!?) so we got permission to take him home on visit for Christmas and … oh dear, did we forget to bring him back? Well, where was that paperwork to let him out of there that we had filed?
• Bed sores.  Mom discovered that he was repeatedly having trouble with bed sores and started taking care of those for him since the nurses did not.
• Dehydration caused heart attack.  Yes, when he was first let out of the hospital and sent to the first of several nursing homes we were to find out were lousy he was not given water.  He had a heart attack, that the doctor said was caused by severe dehydration.
• Ignored when in need of help. This one really got me – My mom and I were beside dad’s bed helping him most of the day and night.  The only time we were not there was for a few hours to sleep at night.  One night we were leaving and his new room mate, who had arrived a few hours earlier, asked me how to work the call button to call for a nurse so he could use the bathroom.  I helped him (very very nice old man that my parents got to be good friends with very quickly)… anyway, I helped him out, then as I was leaving a bit later the nurse still had not shown up so I detoured to the desk to let them know he needed the bathroom.  I pointed to the room and said, “the gentleman in there needs some help getting to the restroom.”  The nurse looked at the room, snorted and said “Oh him, he’s *always* pulling the string, we usually just ignore it.”  My mom was thankfully close enough to drag me off before I choked the nurse.  She was talking about my dad, who the staff never had to lift a finger for.  What the hell did they think about the people that they really were expected to help?  It was no wonder I was beloved by the people in the home that I would go out of my way to help with little things – like how to use the buzzer, getting a blanket or pillow that was out of reach, refilling water pitchers…  ::shaking head:::
• Fellow in bed next to my dad was yelled at for wetting his depends during the night – then made to sleep in the wet depends through the rest of the night.
• A woman in another nursing home not far from where my dad was was beaten by the staff.
• I almost left my dad’s room in one place to cross over to where a elderly woman was literally begging for help.  She never said a word, was happy to just sit and work on (think it was cross stitch), but she was "*BEGGING* for help and they were ignoring her.  I finally stepped into the hall where I caught a nurse and made them go see what the trouble was.  Poor woman had to get in the bathroom and based on what I could hear from across the hall had not been able to wait for the staff to finally get off their backsides and come help her into there.  Staff that had been chatting with one another several yards down from where she was begging for help.

That IS NOT the way I want my loved ones to be “taken care of”.  I certainly do not want those nursing homes to be given even more ability to do that kind of neglect and get away with it.

And these are the people that the government pays for caring for the elderly.  It is their job to make sure the elderly in their care are taken care of and given a dignified end to their lives.  It makes me cry to think that even when they are paid to be kind to the elderly – they still mistreat them, abuse them, cause them harm.  56% of nursing homes in a three year study “caused harm” to their care recipients.  56%.  While they were being watched by state and federal officials.

This law needs to be changed.

And to the sibling that had repeatedly told my mom that our dad should be placed in a nursing home because it would be easier – He will never be in a nursing home again.  Not while I can still draw breath into my lungs.

Do ten 20-40 minute long naps equal 8 hours of sleep a night?

Something that I do not think many realize about being a fulltime caregiver, is that when you are a full-time caregiver it is not an eight hour work day, it is a 24 hour work day.  I get up an average of six times a night to cover my dad back up for one reason or another.   If he has to go to the bathroom in the middle of the night, then it means I have to get up to help him in there and back to bed.  If he can’t sleep, then I am the one that is woken up to talk to him.  When he wakes in the middle of the night – I have to get up and let him know it is not yet morning, the clock says 12 midnight, not noon…

Sometimes I give up on sleeping completely, getting up at 4 in the morning (or staying up until 5) in hopes of getting a little bit of work writing advertising online.  Sometimes I can not sleep because he has sleep apnea and I will sit and listen for him to start breathing again.  Sometimes the stress is simply too much.  To try to sleep means I let in the stress, so instead I will force myself to stay awake and loose myself in something else to do.

For a while this had been catching up on the older episodes of Heroes online.  Then I was watching the first few seasons of Prison Break, rented from my local Blockbuster.  I joined Netflix so I can watch online movies and am currently making my way through the most recent series of Doctor Who (2005-present), when I watch all of those I plan to star at the first episode of Doctor Who and work my way forward with the entire series all the way back to the 60’s.

Anything to offset the mental exhaustion of getting a long series of brief naps in the place of sleep.

My dad had a blood test today, and I needed to stay home because someone was going to be by here, so my sister took him on her own.  She seems to have kept him for a while, since it is now 5 hours after the appointment time and about 4 hours after she should have got him home.  I wish that she would learn to call and let me know when he is going to hang out with them, but still…  It is amazing how relaxing it can be to have some time alone.

It’s not that I don’t love my dad, as mom always pointed out if I did not I’d have run the first time he threw something at me, but it is nice to get a break occasionally where I know that he’s with someone that will keep an eye on him and let me know if anything happens.  Leaves me free to actually relax, I mean really relax.  Able to not worry about anything, such as if my dad’s going to have a heart attack or stroke at any second and I might miss the warning signs.

Anyone that has never experienced that kind of stress has no idea what it’s like, and trust me, you don’t want to know – you really don’t want to know what it’s like to live with that kind of stress 24-7-365.  It’s no wonder my hair is thin (and so was mom’s), stress and poor nutrition are, from what I have heard, reflected in the hair’s condition.

But, I am able to relax at the moment, and am taking advantage of that luxury by catching up on some cleaning.  I’d sleep, but I’m a bit too tensed for that – laying with nothing to think about would send my thinking to bad scenarios and I don’t need that.  So, instead I am cleaning the living room and doing laundry and washing dishes and watching reruns of Burn Notice.