I just spent a half an hour putting together a month’s worth of pills for The Curmudgeon. He takes a lot of pills.

Yes, the pill system I bought actually holds all his pills for a month. It is working very well for him.

I hate having to fill it, but I love having to only do it once a month.

If you need one, or have a family member who could use this system, you can find it on Amazon. We also have the pill reminder alarm clock that you can buy with it.

MedCenter 31 Day Pill Organizer

I am so sick of seeing articles on how important it is to ‘get away’ when you are a caregiver.

Really? Get away?

I’m lucky if I can make a grocery store run and get out to lunch once in a while and my husband doesn’t have dementia or some of the other things that are worse. He has secondary progressive MS.

“Take a break” they say.

How exactly would I do that? There’s no one around willing to take my dogs out and sit with The Curmudgeon on a daily basis so I could take a few days away. IF I could afford a few days away. We don’t have money growing on trees around here.

It’s one SS disability income for both of us.

“Hire someone to come in” they say.

Again I say who? And with what? Money trees are a rare thing. People to do what I do around here are non-existent.

“Have a relative stay with them” they say.

He doesn’t have any. Mine relatives are all far, far away and none are willing.

In reality, getting away, not burning out, and “being mindful” are far from possible for average people.

Ah yes “being mindful” I barely have a minute to sit without having to immediately pop up again, so screw your being mindful crap.

1. Your friends stop coming around.
2. Finding help to get things done is next to impossible
3. The MS Society will give you token help and then disappear
4. Once you find a good neurologist, you hang on to them
5. Your friends stop calling
6. Each day is a lesson in frustration and anger
7. It is possible to both hate and love someone at the same time
8. Being a caregiver is exhausting
9. Staying sane is a tightrope walk
10. Very few people hear your pleas for help

I think we’re going into the dry erase monthly calendar mode here.

Nurses coming two or three times a week, same with PT guy, add to that doctor appointments for both of us, and vet appointments for two dogs.

I cannot keep things straight. He almost missed a doctor’s appointment yesterday.

The Med Center talking pill alarm seems to be working well. We can only hope the dry erase calendar will do as well.

The PT guy asked me what my goals are for The Curmudgeon with his PT sessions.

My goals for him, are to get him where he can do some simple things around here once again, like taking the dogs out on occasion without making it a huge production.

Walking to the car and back without needing the transfer chair part of his rollator.

Walking up and down stairs and back and forth to the bathroom safely a couple of times a day.

Little things for most people. Huge things for us.

I haven’t slept a good solid eight hours since October when he went into the hospital the first time. Why? Because he used to take care of the dogs in the mornings so I could sleep.

I want to see him have to use this less.

Here’s the thing, The Curmudgeon needs his health monitored for a while after five hospital stays in four months.

He also needs physical therapy, and if they can do it at home, all the better.

The problem is, the nurses feel like invaders in my home. I haven’t met the PT guy yet, that comes later today.

The nurses call the day before, or sometimes on the day of, to let us know when they will arrive–that’s quickly changed since I raised hell about the idea of them deciding when it was convenient for them to arrive. Screw that, they will arrive when it is convenient for us. We aren’t paid to be here for them, they are paid to be here for us.

They all remind me of my ‘entitled’ and estranged sister who is also a nurse. Is the art of being a complete asshole part of the curriculum in nurses training? Or are we just lucky?

What we thought was a visiting physical therapist turned out to be another visiting nurse. We had one here just the day before. WTF?

Really? Two days in a row? You’d think they spread it out a bit more. My gawd I haven’t caught my breath from his hospital stay yet and they all come piling in the door giving me more work to do.

It’s all well and good if they actually did something to help, but they just sit there acting all superior (looking and sounding way to much like my estranged sister) and making him feel like a fool.

It’s not his fault he got C-Diff it is the damned hospital’s fault.

Work progresses on the porch to the point of done but he wants to do finishing touches.

Meanwhile a visiting nurse calls and wants us to let her come in no less than two hours from the call. Idiot man said yes.

Our food delivery got screwed up and while I spoke to our salesman on the phone, the nurse began to bug me about seeing all The Curmudgeon’s medications. I opened a cupboard door and pointed to them. Still on the phone with the salesman.

Not good enough, she couldn’t possibly get them down herself I had to climb the stepladder and haul down every fucking bottle for her to check.

That screwed up my ‘filing system’ and it took me an hour to set up his pills for the next week and put them back in the cupboard in some order.

While she went through each bottle comparing them to her “list” from the hospital. I found several gross errors on their part where they double listed several medications. She didn’t appreciate it when I pointed out the errors. Tough shit, you invaded my home without making a proper appointment with us. A couple of hours in advance? Nope not going to find me being a pleasant person.

His release from the hospital added three new medications to his already long list of nineteen medications he takes each day, some of which, he takes twice a day. Two of the new ones he is to take four times a day and the third one he is to take three times a day.

Pray tell how the heck am I supposed to keep track of all his medications AND all of mine?

Running away sounds quite appealing

When the other one has MS you have special ways to get ready for the ambulance after taking care of a very ill him for hours and, for the third time, he’s climbed out of bed and collapsed to the floor, this time you can’t get him up.

First, directly after calling 911, you must print out his medication list, a copy of his living will, and copies of his medical insurance cards.

While those print out you crate the dogs.

Turn on the porch light and unlock the door.

Then you must remove the baby gate that keeps the dogs downstairs.

Finally you run back upstairs to make sure he has clean dry clothes on then dash back downstairs and wait if they haven’t arrived yet.

When the paramedics arrive, you tell them he has secondary progressive MS, you hand them all the paperwork, and lead them to him answering their questions as you climb the stairs for the fiftieth time in the last twenty minutes. (The millionth time that day.)

When they leave with him, you collapse in exhaustion and debate following them to the hospital or getting some sleep first.

Sometimes I follow them in, other times I get some sleep. Guaranteed it will be hours before he’s admitted.

He’s still in the hospital. There’s no way he’s coming home until he’s better and the roads are cleared.

I yelled at this doctor telling her they sent him home three times still ill, they’d better keep him until he’s well this time.

The driveway is now cleared, the street is not. I think tomorrow I’ll try to clear off my car.

We only met with Mike once.

For two years I’ve been trying to get our porch fixed so The Curmudgeon can safely go up and down the steps. No one would do the job. “Too small a job, lady. Not worth my time.” Everyone I called responded in this way.

Not Mike, he willingly gave us an off the cuff estimate to be followed by a more accurate one after he talked to his cement guy. He is very concerned about how unsafe the steps are, especially for one whose mobility is so limited.

Last night he called to tell me, because he has a few LEOs in his family, he was attempting to get the FOP involved and see if he could have them pay the repair costs because he knows the price we’ll have to pay will stretch us thin.

Now, I don’t know if he’ll be successful, but the mere thought that he went so far as to try this broke me down into tears.

On another note. I talked to The Curmudgeon’s doctor and from the way she’s talking, he will be in the hospital at least over the weekend, most likely longer.

I went to see him and he’s just a couple of doors down from where he was last time. Dropped off his MS drugs, specialty drugs they do not carry at the hospital pharmacy, he can’t stop taking them for the time he’s there, so I have to supply them.

His first day there and he was not as out of it as he was for several days the last time he went in.

I have no idea how long they will keep him. I hope long enough to resolve some of the problems they sent him home with last time.