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.

Flip a coin

It has been a long week. I finally got the social worker on the phone, pnly to be told "she oesn't get medical updates" to "talk to the nurses' station".Guess the honeymoon's over!

In checking with the nurses station, I am told there have been no additional notes on my husband's seizure, except to increase his meds. I ask if there are any results from the EEG, nothing! I ask if they can get the results, and they tell me they can call the hospital and ask, but I should call the doctor. I ask them for his name, and find he has an office downtown.

I arrive to visit Craig expecting the same catatonic man I saw last visit, only to find him extremely alert, conversive, mobile and only slightly confused. We have our ritual chocolate pudding, and I give him the YooHoo drink box, but he cannot negotiate the straw, so I squeeze it into a paper cup.
His roommate is gone now, so he is alone in the room. After a bit of strange "conversation", he tells me he has to get to the car and get back to work. "Nothing is free you know!".

I am relieved that he seems to have recovered so well from the seizure and meds change.

I actually perform some "normal" household cleaning projects over the weekend. I actually anticipate the next visit with Craig with anxiety. The last time he seemed really up, was when he had the seizure during the night.

This visit was very different. He does recognize my voice, seems mildly co-operative....until we get to his room.

Now I have to chase him down to eat the pudding. He cannot negotiate the spoon or pudding cup. I feed it to him. He keeps grabbing my sleeve, and at one point tries to pull my thumb into his mouth. I get him onto the bed, and as usual, he falls backwards in an odd position. After a few minutes, I decide to try to swing his legs onto the bed and he yelps, saying that hurts. Then tells me the cat scratched him. I tell him there is no cat there, and now he says it is a dog. No sense arguing.

After trying vainly to talk to him, I notice he is making jerking movements intermittently. I ask if he wants to sit up. He tries, but can't get all the way upright. I offer help, but he is dead weight and fights me trying to sit him up. I ask him if his back hurts an he says yes. I tell him I am leaving and try to kiss him goodbye, but he wants nothing to do with it. I tell him I love him, no response. I gather my things, turn to leave, and tell him again I love him. He looks at me and says "bye Peg". Then starts to mumble about ingratiation.

I stop at the nurses' station and tell them about his back, but tell them he is irritated right now, so might want to wait a bit to check his back.

I actually have a nice chat with the nurses for the first time. I leave defeated again.

I hate the up and down of this disease. If I expect the worst each time, I will miss the few good pieces there are left. But if I let the good moments lift my expectations, I am always so sadly disappointed. Just like flipping a coin.....

At wits end

It's been a week since my last blog entry because of the events of the past week.

On Thursday, I made my usual trip to see Craig. I was surprised and encouraged when I arrived.
He was so lucid and friendly! Knew who I was, even commented on a news story on the tv. After being there for a while, he kind of laid back on the bed and started pulling his legs up into a kind of fetal position. I asked if his back hurt, and he said "Not anymore". After a couple of kisses and hugs,
he drifted off to sleep.

I was wakened at 2am to my son telling me I needed to take the phone call. It was the nurse from the nursing home telling me that Craig woke up and said he needed to use the toilet, and that they had put him on the toilet, only to have him yell loudly and start to seize. She said they had gotten him to the floor safely, but the seizure had lasted 3 minutes ( a long one), and that the doctor wanted to send him to the hospital. I quickly agreed. Why would you even have to ask?

In the morning, after laying awake most of the night, I called the nursing home, and they told me to call the ER.

After 3 hang ups, I finally asked for admissions and was told he was admitted, and they transferred the call to his room. Now forgive me if I seem like an idiot, but why would you send a call to a room with a sedated Alzheimer's patient?

I hang up and call back, asking for the nurses station. I ask the nurse why he was admitted, and she says I will have to ask the doctor. I ask if I can leave my cell number, and she reluctantly takes it down.

Now I do not know the name of the doctor who is seeing him, and wait for a call. I dress and go to work, hoping to avoid yet another day with no pay. I explain to my boss what has happened and bury myself in the work.

Several hours later, the hospital nurse calls to say that they are trying to schedule an EEG, and that if they can get it done today they will, but if they can't they will send him back to the nursing home.
Several more hours later, the hopital social worker calls to say he is scheduled for 1pm, and that theu will return him to the nursing home around 3pm. For the first time I am speaking to someone who actually gives me some information! I ask how long until the results are back and she says later that day, or Monday.

I wait to get a call saying Craig has arrived at the nursing home. Silly me!

I go to the nursing home on Sunday after I am sure he is rested and no longer sedated from his hospital trip. I stop at the nurses station, and ask how he is. After looking around at each other,
one of the CNA's says he was finally up today. That is ominous.

When I arrive in his room, his roommate is gone home, and Craig is sleeping. I wake him and tell him I brought coffee and pudding. He looks at me with dead eyes. I realize he has no idea who I am. After a lot of prompting, I get him to sit up. He stands and stares for a minute and heads for the door. I ask him where he is going and he says to the car. A blank stare follows as I tell him he has no car. he shuffles off out of the room several times, and I return him each time, finally getting him to focus on the coffee I brought.

Iplace it in his hand, and as I start to release the cup, realize he is not gripping it. My hand under the cup, we finally get it to his mouth, and he turns to leave again. Another redirect to the pudding cups. He tries to pick up the spoon, but cannot grip it, and starts to dip his fingers in the pudding. I retrieve paper towels from the bathroom, clean his fingers and place the spoon in his fingers. He stirs the pudding into an almost liquid, pulls the spoon out, and pudding runs all over him and the floor.

I start to wipe the floor, and realize he is falling back on the bed.I take the pudding cup and see that it has poured onto his stomach. More clean up.

By this time, he is starting to close his eyes again. I hold his hand and he grips back. I cover him with his blankets, his hands are cold. My eyes fill with tears as I look at this man who has been so strong willed and independent all his life reduced to this shell of his former self.

Then I see him looking at my face and his eyes start to water too. He closes his eyes and falls asleep. I have to leave before I start to blubber.

Monday first thing, I call the social worker at the nursing home.In a meeting, leave a message.
I want to talk to the doctor, need to know if the condition he is in is due to the seizure, the meds, or another advancement in his condition. I want to know what the EEG found.

I sit at my desk waiting for the phone to ring, afraid to use the restroom, afraid I'll miss the call.
At 4pm, I call again, and am told she has left for the day. I think she is avoiding me by leaving early.

How can people not understand the need to know what is happening? What if it was YOUR Husband/Wife/Mother/Father/Brother/ Sister/Son/Daughter? Wouldn't you lose your mind worrying? Wouldn't you be afraid the next call would be one you could do nothing about?

My Sister and Brother say I should report the entire bunch for the treatment ( or lack of) that we are receiving. I just want him to have a little care and dignity. Just because he can't complain doesn't mean he shouldn't get the same respect as anyone else.

We will see what happens tomorrow. Maybe that will be the day I finally get pissed off enough to call the ombudsperson.

The Birthday came....and went

For me , birthdays are special.

Being born on Christmas Eve, and having my birthday forgotten, ignored, combined with Christmas, makes it a special event to me.

I spent the weekend plotting and planning, worrying what I could give for a gift that he would be able to appreciate. I also tried to decide whether to take the time off work to spend the day with him, on what might be the last birthday he will remember. I tried in vain to talk the boys into
visiting their Dad.

At the last minute, I called work to tell them I would not be in, and gathered up the gifts, went to the bakery, and headed off to the nursing home, pleased with myself that I was going to make his birthday special.

When I arrived, Craig was asleep, which gave me time to decorate the room and the pie and cake I brought. I also brought the camcorder, thinking I would take videos of him opening the gifts and smiling.

Wrong again! When he woke, he had no idea who I was. I asked if he wanted pie, no problem there! His roommate and I sang "Happy Birthday", as they ate the pie, the Craig had cake, chocolate milk and Peach smoothie. I tried to interest him in the gifts, but he just laughed that
I'm confused laugh, as I pulled the presents out and showed them to him.

Even the cards from the boys and me were stared at and dropped. I tried to give him a kiss and
no co-operation....guess he thought his wife would get mad.

The aid came in and introduced herself. She said he tells her everyday that his wife is coming.
I tell her it's too bad he doesn't know she's there......

He's off and running again! I clean up, after unsuccessfully trying to get even the nursing home staff to have cake with us., tuck my tail between my legs and retreat.

On the way down the hall, Craig looks at me and tells me my waist is too big....add insult to injury.....

At home, I sit on his bed, look around and lay down and cry myself to sleep. I can only imagine what he must think, since his "wife" didn't come for his birthday.

Not that our marriage was perfect, but before this disease, we did pretty good. There has to something when you've been together 36 years. I miss my friend as much, maybe more than my husband.