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.

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.

Every once in a while I get hit by a sensation that is only describable as overload. It is a headrush feeling, a sensation of dizzyness, faintness, weakness, and the world collapsing in on me. The trigger is always the same, a realization that …. that mom is never coming back. I know that it is going to send my Cali-friend into hyper overdrive on the concern levels, but, the only way I have to fight back against those feelings is to shove them back, to refuse to let them in. I tell myself again and again that she is just not here, I convince myself that she is visiting my aunt down south, took a trip to the lower 48, is in town shopping, is asleep back in her bedroom… whatever it takes not to think of the truth.

I know the truth. I know she died and is buried and I will never see her again, but that is not something I can think on without crying and I can’t cry. Not yet. I have to focus on taking care of my dad, because that is what she would have wanted. Mom set everything aside to take care of him. We used to talk as we would drive into town, to make plans that one day, when it was just her and me, we would go gold panning and do all of the things we could not do now. We were going to drive down south, to the lower 48 because she has things she had put off that she wanted to do. It was going to be me and mom facing the world together. She had promised me and herself that we would do so much – someday.

I can’t even type this without crying, which means that since I am on the couch as I write this, I am hunkered behind the screen of the laptop where dad can’t see me wiping my tears away with a Kleenex. I am fighting every day to stay strong for him, to not break down because he needs me, and knowing every day that one day those struggles are going to collapse in on me and I will be buried in emotions I can no longer fight back against. I just need to hold it all together for as long as he needs me.

I just called The Scooter Store to see if we could get my dad an electric scooter.  My mom had tried before a few years ago and ran into a road block – one that is still there.   They don’t sell scooters in Alaska (or apparently in Hawaii either) and can’t help us… unless we want to pay up front and then try to collect from Medicare ourselves.

Very disspapointing for dad, but the gal I spoke to was very helpful and while she could not give me any information on other machines of similar quality to theirs, she did help me in finding the numbers for several other companies that I could call to try and get dad a motorized wheelchair.  So I am going to start calling around and see what I can find – hopefully there is one out there that deals in Alaska.

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.