What do I do now?

It has been a week since I called the ombudsperson. Nothing from social worker, nothing from
podiatrist.No glasses. No EEG results.

Craig has been walking better since I cut his toenails, but seems to be less cognitive this week.

Today it hit the fan.......

Got 2 voicemails from nursing home. Another seizure. Nurse asks if he has a history of seizures.
Which part of his chart is missing? Or do you even read it?

I decide this time I am going to go thru the process myself, sp I will have some input.

Rush to nursing home.Charge nurse says doctor ordered MORE meds. I ask why more meds.
She says they add to existing seizure meds if not effective. I ask if not effective, why is he getting them? Go to room. LPN is sitting on bed with hubby trying to keep him from getting out of bed.
He is unable to speak, non interactive. Keeps trying to scoot himself up in the bed. There are tears in his eyes. I tell the nurse I think he is in pain, and she agrees.

I tell them I want him to go to the hospital, so they call the doctor, and he writes the order.

Vitals are taken, and his BP is high. Nurse tells ambulabce driver he is tachycardic too.

Follow to hospital. After 1 hr in waiting room, ask for update and am sent to his stall. He still cannot focus, speak or interact. Has no idea who I am. Nurse states they drew bloodwork, did chest xray.Are waiting to see if doctor ordered CT scan.

Sit for 1 1/2 hrs. nurse comes back to tell me they are waiting for transport for CT. Wait another hr. Step out for coffee and food. Realize past lunch and no food for hubby, so buy overpriced cookie and M&M's for hubby.

takes another 20 mins to get back to hubby.Wait another hr, nurse asks if PA has been in. NO.....
Says they are going to send him back to nursing home. What?

After feeding hubby cookie and candy watch monitor for another hour. Watch bp spike, watch
respirations drop to 7, watch pukse race up and down, spiking at 157.

PA comes in and says blood work and xray good except his Depakote (seizure med) level is low.
Guess he didn't get his meds today. Wonder how that happened.

I ask why his pulse and BP are acting weird. Told they ran cardiac on his blood and NPF.
Said she reviewed his history. Asked why EEG results were never divulged. Dodge that question.
Tell her he never had seizures until on meds.She is surprised, since chart says history of seizures. Says should have seen Neuro after first seizure. Told her I asked for referral when hubby was admitted to NH. Says get pushy.

Then says something that made me sit back...says seizures are not normal for AD.

Wonder what school she went to????????

Ambulance comes to take hubby back. I call NH ask nurse to note on cgart for Doc to call me.
Tell nurse about request for Neuro,she asks what insurance he has.Tell her Medicaid.

She tells me there are NO Neuro's in our county who accept Medicaid. She says he will be put on list. I tell her can't get to the top if no one puts you on the list!

Call ombudsperson again and leave message. Will talk to her about NH, doctor, Neuro.

Wonder if Craig will last long enough to see the neuro? Not if this bunch has anything to do with it...

How much more can I take? How much more can he take?

How awful it must be for older spouses to try to navigate this mess,,,,,

I am still fairly young (relatively speaking) and I am losing my mind!

Finally had enough

Went to see Craig yesterday, fed him pudding, yoohoo, boost and a few pieces of candy.
His new roommate is already gone. He tried to converse, not making much sense.

I notice had tons of flaking skin in his hair. Brush is gone, found the comb. After 15 minutes of combing got most of it out.Must be relaxing for him, as he yawned thru most of it.

He's wearing pajama bottoms that aren't his, even tho he has clothes hanging in his closet.
I have no idea where this stuff keeps coming from.

After a few hours, I decide it's time to leave before the rain starts, and tell Craig I have to go home and feed the cat. He asks why I have to feed the cat. I say because he'll bite me if I don't feed him. He says that would be bad.

I start to leave and he calls my name, and starts to follow me. This is unusual. Then he starts saying toesover and over with mismatched words attached.

I ask if his toes hurt, and he says yes to my surprise.

Now I have seen him with some pretty severe injuries say they didn't hurt, so this gets my attention. I sit him down, pull off his shoes.They are caked in the tread with old food.Yuck!
Then I pull off his socks, and it is immediately apparent why his toes hurt.

His toe nails are so long they are growing back into his toes. And he has one on his right foot that is black and falling off. I get a pair pf scissors from my purse and clip them, with him saying ouch a few times. Then I find his slippers and put them on, as they have more give on his toes.
I kiss him and tell him I love him, and he says it back this time.

I go to the nurses station, no one there.I see a nurse up the hall, but am told she doesn't work that end.Nice.....

I find an aide and ask to leave a message for the nurse. I explain about Craig's toes, and ask to have them looked at.

As I am leaving the nurse comes in and I repeat the story to her.She says she will look at his toes.I am told the Podiatrist hasn't been in for a while. I say it doesn't take apodiatrist to cut nails that long and leave.

I wait, but as usual, hear nothing from the nursing home.

I understand bumps and falls, but the lack of basic care is more than I can handle.

Today I called the Ombudsperson, She said I should ask the Social worker where she tried to place Craig. I tell her she doesn't return my phone calls anymore. She tells me to leave a message saying I spoke to her.

Magic does exist! How quickly the call was returned this time.

I explain about the call, she asks what happened. I tell her about the toes. I tell her they are not equipped to handle him and ask for a placement at an AD facility.She says she will get right on that, and that she will have the director of Nursing services call me too talk about the care concerns.

We shall see what happens now.

I will continue with my discussions with the Ombudsperson, because even if Craig is placed elsewhere, ther are so many people who have no one watching over them, I am afraid they may not have someone to notice this is happening to them too.

Someone has to care. Even if it is a perfect stranger.

New set of problems

It's been a busy week.
After waiting an hour in the room, leaving work early and arguing when the eye doctor wanted to leave, I finally got Craig's eyes examined. Took forever, no co-operation, but finally, Doc says he really only needs reading glasses, but we get Bi focals ordered so he can wear them all the time
without killing himself trying to walk. Doc says his eyes lok healthy, so his focusing problems must be from the AD.

Then find out the MA doesn't pay for the glasses.Wonder where I'm going to come up with this money......

Went again Friday and foud Craig sitting on an unused porta potty at the nurses station.After 15 minutes of coaxing, I finally got him up and down to his room, where he promptly flopped into a wheelchair. Got him to drink a whole quart of gatorade, as the nursing staff called to inform me he was dehydrating. Brought snack packs of m&m's which he really liked. Then the hospital intake person showed up with Craig's new roommate.

Tried vainly to get him up and out of the way so they vould get the wheelchair past. I finally grabbed the chair and pulled it and him across the room. THEN he gets up.......


Now he's off and running, dinner trays are coming, so I make my exit.

At home, my cell rings, which hardly ever happens, and for a minute, I am scared....

It's Amy from Cleveland.It seems that only people I haven't seen in years, and people I've never met are still concerned about me and what is going on with Craig.

By the way, Hi, Mark! Amy says you read my blog too. Thanks for caring!

And please keep reading Lisa's blog too.It is a good view on the opposite side of the fence.

In the mail I find the SSA letter stating Craig has been approved for Disability. At first I am thrilled, then the tax and medicaid implications start to roll thru my head and I am spastic.
I will need an attorney to figure it all out I'm sure.

Again, wonder where that money's going to come from.

Then the call comes from the nursing home. We found your husband on the floor during dinner.
They are not sure if he fell, layed down or had another seizure, so he is on watch for the next 3 days. They say he has no injuries, and that after a short while he ate, took another walk and went to bed.

I also noticed that the package I have been waiting for delivery on is taking an excessive amount of time to arrive, so I go onto the website, find out there is a USPS tracking link and click.

According to the tracking info, I received the package a week ago, while all 3 of us were home, and we had no mail that day. Send an e mail to customer service asking about a replacement package. I can't afford to lose a package with 150 dollars worth of goods in it to some crooked
postal worker. We'll see what the company has to say.

Looks like we're heading for another of my famous downhill slides. They keep telling me God only gives you what you can handle.

I think God has overestimated me sometimes......

My turn

I guess I have concentrated on Craig since starting this blog, but now days I am seeing the effect all this is having on me too.

Fitful sleep, aches and pains, headaches. I have a low tolerance level for things I would have laughed off in the past. But the biggest thing is the realization that I am alone. Alone in fighting
for Craig's dignity, alone in trying to keep him from thinking he's been abandoned, and alone in my personal life.

Craig has always been with me since I left home.We have never been apart. Now that the initial
flurry of making arrangements is over, I find that I have no ambition to interact with people.

I used to find solace in busying myself with making sure Craig was taken care of properly. Now that I have come to realize that I am wasting my breathe trying to improve his conditions, I have
stopped waiting for life to be Normal again. Life will never be normal again. I will never be normal again.