Sleeping All Day

Dementia takes such strange tacks. On Monday night, Lola went to bed. On Tuesday, she seemed to want to sleep a lot. So I let her. I kept thinking eventually hunger would drive her to get up. It didn't happen. Since every time I peeked in she seemed asleep, I finally decided if she wanted to stay in bed all day I'd just let it go. Finally in the evening I woke her up to take her medicine. She didn't seem inclined to get up, was somewhat disoriented, and I feared if she arose at that time she'd be up all night. So I let her lay back down. Around 11 p.m. it dawned on me she hadn't been drinking all day and needed hydration.

I made her some sugar milk, a bowl of peaches and some bread with butter and went in to make her eat and drink something. When I forced her to get up, she commented, "The bed's all wet."

My mother had laid in the bed, peed in it, and was contented to simply lie in a soiled bed. It had never even entered my mind that she wouldn't get up to go the bathroom. I know she mostly lives in the past. I know she sometimes doesn't recognize people. I know she gets confused sometimes about things around her. I didn't know the dementia would make her just pee in her bed and lay in it.

I got her up and cleaned up, change of clothes and bedding. Sat her down to eat and drink, which she did with gusto. Then put her back to bed. When you're not experienced with caring for elders, these things just sideswipe you.

Today she got up at 10:30 a.m. acting as if there had been no day between Monday and today, Wednesday. She's gone about her normal routine of watching TV, eating, and toileting just like nothing had happened on Tuesday and everything's as normal as it can be for her.

The only thing that was striking today was when I served her supper of chicken noodle soup and a plate of condiments she loves (pickles, okra and olives), she commented that she didn't rightly know how to eat that. Somehow the bowl of soup confused her. I explained to her to use her spoon or just drink it, and she was back on track and doing what she's done her whole life.

I've been scrambling to get papers in order, needed information and get ready to file the Medicaid claim.

Lola's Joe's Fallen Delusion

The last two days Lola has wanted to stay in bed until 3:00 p.m. or later. Today she was up by 11:30 a.m. Sometime in the early evening, I heard her crying. This was the first time since my Dad's crisis that my mother has cried. My first reaction was to let her cry a bit to grieve and get it out.

Mother didn't just cry a bit and get it out. She began to sob and didn't quit. So I went into the living room and sat on the stool in front of her and asked her if she wanted comforting or to be left alone. Her reply stunned me.

My mother was crying because Joe was lying on the floor in the den and no one was picking him up.

Note here: she hadn't run out of Xanax so the hallucination wasn't, as far as I know, caused by a drug.

I gently told her that Joe was safely in a nursing home in Martin, TN, and that he was perfectly safe. Then I asked her why on earth she didn't call to me - I'd walked through the room twice trying to check on her because she was crying. Sobbing, she told me that, well, he was just lying on the floor and she was so confused she didn't know what to do.

Again I reassured her he was safely in a nursing home that  was keeping him from falling. Then, astoundingly, she asked me who was going to pick that man in the den up. Gulp. I assured her there was no one on the floor in the den. There was most surely was, she told me. So I walked into the den and across the clear floor space to show her there wasn't. Yes, there was, over by the bookcase. So I walked over to the bookcase. No, I wasn't in the right place. Covering every single floor space available I walked around the den. She still wasn't exactly happy.

So I distracted her with pizza for supper. That ended the saga of Joe in the den. She sat back waiting for pizza, which I had been in the process of making. She ate pizza and has not been upset over anything the rest of the evening.

Of course, it's now 2:00 a.m., and she's still up and avidly watching TV. I'm beat and going to herd her to bed after I finish this blog post.

Visiting a Demented Relative in a Nursing Home

Uncle Charles went to visit Joe in Martin today. His wife, my Aunt Agnes called to let me know he'd gone, but it was pretty upsetting to him.  Of course, it was an upsetting visit. With the state of Dad's dementia, all Dad knows is that he wants to be home, and no one will take him. I got the impression that although Charles' visit was fairly long, the majority of the visit was spent with Joe asking Charles to take him home. Aunt Agnes said Uncle didn't want to go back.

On the outside hearing about people being dumped in nursing homes, people want to judge about that. When you're on the inside, you begin to understand it. Joe's mind is far enough gone that he can't be controlled at home. So the caretaker - me - is faced with the decision of whether or not to care for the demented in the home.

The bottom line question is:  Do you let the demented live at home, with you the caretaker

• devoting every minute trying to keep them safe
• letting them go and take what happens - broken hips, arms, or skulls
• letting them die from injuries suffered at home

or do you put them into a safe environment?

Research Topics, Good Neighbors and Applesauce

Saturday post actually posted on Sunday morning:

The other day when I was getting Joe checked into his new facility, one of the staff was questioning me about his medications, not in detail, just in general. I said he didn't take many.

She laughed, shook her head and said, "The Alzheimer's rarely do."

I asked, "They don't?"

She replied, "Nope. It's almost always like that. They rarely take as many medicines as our regular patients."

Makes me wonder if that's a facet some brilliant researcher ought to be looking into. An Exploration of the Ratio of Medication Requirement in the Late Stage Alzheimer's Population Versus the Non-Alzheimer's Population. It might make a dandy paper to be published by some medical journal. Chuckle. It might make a dandy thesis. Except, do physician's do thesis (what's the plural of that?). Wonder what field that falls into.

Lola Doesn't Know and Alzheimer's Stages

Most of the time I make Lola get up by 1:00 in the afternoon. Today I just let her sleep/lay there. Finally at 3:00 I went and stood, arms akimbo in her door. She sat up, sat there looking at me and eventually said, "Who are you?" "Your daughter, Gayle. Who are you?" I replied. You could see her face relax, and she laughed and said, "Your mother."

I asked her if she was going lay around in bed all day, so she started getting up. I left to go get her medicine and a "breakfast." When I walked back through to get her dentures, she was just turning around to sit down on the bed again. I asked her if she was going back to bed. She said, "Well, I just didn't know where I was or who was here or where to go." Sigh. So I told her to go to the living room.

I got the dried tissue brushed off her dentures, and she had just put them in when Katherine Dubrock came by for a visit. When Katherine asked Mom about Joe, I had to answer for her. Mama didn't know anything about where he was or his condition. All she could say was we had to put him in a home. I swear the thing she says most often now is, "I don't know."

In addition to sometimes shredding the styrofoam cups, she's also taken to turning any drinking glass upside down on the table next to her. Sometimes they're mostly dry. Sometimes they're not.

Since Joe's Alzheimer's diagnosis is recent, I don't really know a lot about the progression of the disease. So today I went to an Alzheimer's page (click here to see) and read over the stages. From their descriptions, in my opinion, Dad is at Stage 6 out of 7. I'm just at Stage 3 (tongue in cheek.)

The dietitian from the new facility called me today, per my request, to discuss Joe's eating. We had a good discussion. I came away feeling that they do go farther than the other institutions I've experienced so far. She mentioned one man that ate baloney sandwiches every day. It's what he would eat, so they gave it to him. She said they monitor what the patients eat and try to make adjustments where possible.

Oy, I've felt about as bad today as I did Wednesday. Hopefully, it's just reaction to three weeks of high stress. A lot of times when I've had bad stress, I've caught a cold. Today I've felt achy in my throat, itchy in my nose, and droopy. That could just be hay fever, which I also get worse in the fall than the spring. Keeping my fingers crossed it's not a cold.

Non sequitur: I don't understand non-touch soap pumps. If you're washing your hands to get rid of dirt and germs, aren't you washing off anything you might get from the soap pump?

Fear of Nursing Homes

So many people of my parents' generation have this overbearing repulsion of going into a nursing home. I've been pondering this. I have to admit that I don't fully understand it.

I do understand the desire not to be in a Medicaid home. To not be in a room with another person who is perhaps moaning and groaning whilst enduring months of reaching death while you have the sense to know it. To not want to live with a functioning brain amongst people reduced to drooling, diapered hulks in a wheelchair in the hall.

What I don't understand is trusting that this will not happen to you. I don't understand not being willing to plan for needing help, getting finances in shape, and not being willing to live in assisted living that assures privacy while also giving needed help. If this is planned for, it doesn't have to be the horror of a Medicaid nursing home.

What I don't understand is insisting on being HOME when your children have lived elsewhere for 3 decades. Or if none of your children in your area have room to house you. Or if all of your children and their spouses work, and none of them can quit work to care for you when you can't.

In my wildest dreams I wouldn't wish on my son what I'm going through with my parents. My first desire is that I just drop dead before I ever am in the straits my parents are in. In conjunction with that, I desire to plan ahead enough to be able to afford a place that allows me a private life while needing some bit of help as I still enjoy living.

Post Apocalypse Thursday

Following the apocalypse of Tuesday - Joe getting kicked out of the last nursing home in west Ky. that would take him and the mad scramble to find a lock-down unit that could - I mostly collapsed on Wednesday. I slept on and off all day. I had a headache and was groggy all day, barely functioning.

Today, Thursday, I woke up feeling much better and able to do at a few things. I managed to get by Bardwell and pick up a few groceries, then drive to the Courthouse and make an appointment next week for a deed transfer.

I drove down to Martin with some paperwork they needed and an extra blanket for Dad. I opted not to see him after talking to the nurses in order to give him time to settle in and let them gather a picture of his mental status. They had had to give him a shot on Wednesday (yesterday) to calm him down. If I saw him, I would simply agitate him and skew their assessment. They said when they gave him the shot it didn't knock him out or anything, with looks of amazement on their faces, and that he simply went into the dining room to eat. The picture of them giving him the equivalent of enough Ketamine to knock a horse out yet the 99-pound man just kept on going went through my mind.

Joe's and Lola's Behavior

Here's a little more information about Joe. Firstly I later learned that when he had his episode at Parkview on Friday and they sent him to the hospital, they did not want to take him back. Although they offered to "save his bed," in reality they knew the situation and knew I couldn't pay them $269 a day to hold his bed. They had already placed somewhere in records that he was undesirable to them. It was easy to give lip service to something they didn't think would happen. In other homes and with easy patients there's an ability to handle things without demanding you must pay me this amount of money now.

Parkview didn't want Joe because he argued with other other patients. He hit caretakers sometimes. They weren't equipped to care for escape artists. Although some workers said he was beginning to adjust, he was more than most could handle.

On Friday in the hospital when some of the caretakers were doing procedures, he hit them. Later in his room, he was biddable, and "a nice, sweet old man." So most reports on him suggested Medco could handle him.

Medco accepted Dad not realizing what a handful he was. Their facility was not a locked door facility. They had to put 1 person dedicated to him, and they're not set up to work that way. Joe was intent on going home. Every time he thought he wasn't being watched he headed for the door. Where he thought he was going is a guess; it was just home. He didn't know where he was, but if he got out he could go home. How he thought he was getting home was inconsequential. In a little over 15 hours they called to say he had to go.

Surprisingly, after he had his stroke on Friday once he recovered by Monday, he was more stable and more mobile than before he had it. You'd almost swear the stroke fixed something from whatever happened two weeks prior. The Medco people worked hours yesterday trying to find a facility for Joe to go to because they honestly felt he could not be sent home with one caretaker caring for two elderly people.

On Mother's side of the fence, she's doing weird things lately. For some reason she started sitting half-full Styrofoam cups of water in the Kleenex box. When I chided her about it, she started shredding them in the wastebasket. Foam cups are easy to use in a situation like this - smaller for unstable hands to hold, firmer than plastic cups, not breakable like small juice glasses.

Her shredding them is a PITA because they can be rinsed and dried quickly. They cost money, and getting optimal usage out of them is, well, optimal. She's also taken to throwing away the little pill containers one of the sitters brought us. I think they're sauce cups like a restaurant uses. Convenient. Black, which makes it easy for elders to see if all the pills have been taken. If she'll quit throwing them away, I have enough to last.

She's been on a kick of going through drawers and things to see what's in them. She doesn't have a clue. I'm finding all sorts of stuff out - a book on sex and chronic disease. Really? Huh. I think she goes through things in the middle of the night, and frankly, I don't sleep lightly enough to hear her. I find toothpaste out, scissors out, Efferdent tablets out (even though she hasn't washed her dentures herself in 2 years). She's throwing things out she's kept for years - old photos and letters. She doesn't even know she's done it when I ask her about it.

She's quit wearing her glasses. She forgot that she had to use a magnifying glass in addition to her glasses to read anything. So now she's not even wearing her glasses.

She sucks all the glue out of her bottom dentures in about 15 minutes if not less. Now she's started taking them out when the glue is gone. Her mouth is sinking in. If I reglued them every time she wanted it, she'd eat a tube of denture fixative in 2 days.

She's almost stopped talking. Whenever I ask anything or say anything to her, I have to repeat it. Frequently I have to tell her to answer me, or she will just sit there and look at me.

She can't remember how to nor is capable of changing the channel of the TV by the remote control. But she can turn it down every time I get a call and she wants to listen. I have to go outside if I want to have a private conversation.

That's about all I have the energy to document tonight. I've napped on and off all day today. I've simply taken the day off. I've had a headache and felt groggy all day. Tomorrow I have to be up and at it again - courthouse and visit the new facility, talk to the dietician, take an extra blanket. Don't look forward to the visit.

Because I Needed It

Because I needed to remind myself of who I used to be and what I used to do, here is a repost of a video I made about some of the lampwork beads I used to make before I had to move to care for my parents:




I used to get lost in working hot glass. I used to spend hours making one bead. I used to be good at it. I used to have the skills and knowledge to know reactions, chemistry, temperatures, and how to do certain things. I used to make actual, gasp, money  at it.

It's been so many years now, if I ever do get to do it again, I'll have to relearn the basics. I'll have to retrain my hands to do what they used to do automatically. I'll have to spend a year building my business back up.

You have no idea how much I miss what I used to be and do.

Joe in Martin, TN

It took all day, but we finally got a bed in a lock-down unit for Joe. It took going to a different state, but fortunately, not too far from us at the present time. Martin Healthcare in Martin, Tennessee, has a lock down unit and had an empty bed. Thank heaven.

The social services person, Letitia, at Medco in Paducah, worked tirelessly today to find a place. Thank you, ma'am. I appreciate your effort. You managed to pull off a task I am totally unqualified for. Again, thank you.

I spent from 2:00 p.m. until a bit after 5:00 p.m. waiting, hiding from Joe, while they found a place, faxed papers, got a confirmation, got discharge papers signed and done, got referral papers signed so the new place would know the proper meds and medical things they needed to know, and packed up his stuff.

Then I met Joe, got him in the car and headed toward Martin. He was so terribly happy. He thought he was going home. I couldn't tell him I was just taking him to a different facility. He babbled all the way from Paducah to Martin. He was delighted to be out of there. He was delighted with the day. He was delighted with all the new roads. My, wasn't it a long round-about way to Arlington. He either knew every single road we were on or had never seen them before in his life. He talked about how long the trucks were. He talked about all the lights. He talked and talked.

When we arrived, he was going to wait in the car. The people at the new place had it all together and had a wheelchair and personnel waiting for him. I told him he needed to go in. He agreed, but when they wanted him to sit in the wheelchair, you could see it come over his face that he realized he was in another facility and not going to Arlington.

While the staff got him settled in his room, I spent the time with the new social services person, Debbie, signing paperwork, reviewing policies, and getting enough information that it will likely take me 2 days to process it all.

The new facility impressed me with its cleanliness, its spaciousness, its light airy feel, its furniture, and its patient to caretaker ratio. Joe is finally in a locked ward from which he cannot escape. The personnel on the ward, at 8:30 in the evening seemed like long-term employees, not young staff that were new-hires. They seemed to know their business, seemed to know their patients, seemed to have endless patience with them, and seemed to know how to deftly handle difficult patients.

I was forced to leave Joe a bit before I actually had meant to because he was becoming so agitated, argumentative and loud. He was already yelling at other residents. He was extremely angry with me and totally incapable of understanding anything other than he wanted to go home, and I was preventing that. Everything was a load of crap.

Of course he could walk. Of course he wasn't falling down. Of course I didn't have to care for him. Those were the main issues he could deal with. Dealing with you won't wash, you can't shave anymore, you stink, you shit and pee in your pants, you wander, you won't quit going, you won't quit trying to burn, you won't quit walking to town were so far out of the realm of his brain that they're not worth even trying to deal with.

So I left him in the hall, propped against a corner, in his khakis, t-shirt, shirt, and lined winter coat with the hood up over his head shooting dagger looks at me and anyone crossing his path.

I arrived at Lola's house around 9:30 p.m. worn out. Aunt Agnes had again come to my rescue and sat with my Mother. My regular sitter had been at the hospital because her daughter had fallen in the shower, smacked her head on the faucet and was in surgery. It was late for my aunt, and I could tell she was tired and anxious to go. There is no way you can express the gratitude you have for family that will come to your rescue when you're in a tight spot and are begging for help.

May I please, please, have a few days to breathe, to handle the present business affairs, to go to the courthouse, to meet with the elder care attorney, to consider what's next, to simply sit and recover one day? With any luck at all, in the locked ward, he is safe in the hands of people that can finally handle him and will not kick him out because he's too difficult. May he not have another stroke or health crisis for enough weeks that I can figure how to and actually go about resolving other personal care issues with Lola, my husband, and myself.

Kicked Out

Well, I just got a phone call from the new nursing home. Joe wasn't in there 24 hours before he managed to get himself kicked out.

There is not one facility in Western Kentucky that can handle him, or will take him. There is not one bed available in any facility with a lockdown unit, which is what it takes to ensure his safety.

My choices are to scramble to find a facility in a different state or bring him home this afternoon. If I bring him home today I can almost guarantee that he will have fallen again by tomorrow. I might be surprised. It could happen.

So I'm off to Paducah at 2:00 to bring him home.

Bits and Pieces

Something I wanted to document before I forget it - Joe was weighed at the hospital yesterday. He now weighs 99 pounds. He lost 25 pounds since September 10.

I have to go to Paducah this afternoon to finish up paperwork for Medco. I'll be taking Joe some extra blankets and things. I'm going to stop by Wallyworld to see if I can find a small, affordable TV for him to put beside his bed. I  debating whether or not to get him a headset to listen to it on. One would think he would be able to hear the TV with it, but then one wonders whether he could remember to use them.

Let's all keep our fingers crossed that Joe doesn't act out at this new place. He seemed calm yesterday, and was well behaved. Things will be so much easier if he remains so. I still have to coordinate getting his glasses replaced, his teeth cared for and his bottom partial usable, and hopefully some new hearing aids. I don't know if he can do the trip to the VA in Marion where the VA might hopefully assist in the cost. The price of them is mind boggling.

For Lynn - I've been listening to Boomerang: Travels in the New Third World, a financial book by Michael Lewis (for a review, click here.) One of the cities he visits to discover it's money woes is Vallejo. The first time he said the city's name, my mind immediately went to you.

Lastly, I hope to find time later today to finally get the pictures of Josh and Maurya's wedding off the phone and posted here. I'm sorry it didn't get done and posted more closely to the wedding day.

Update on Joe 10/10/11

Joe is now in Medco Nursing Home in Paducah as of today. It was, as usual, a heartwrenching thing to do. I picked him up from the hospital. He wasn't medically qualified for an ambulance ride. Excuse my French, but fuck them for making me do this. Considering it's about $800 for an ambulance ride if you're not medically in need, which they didn't consider Joe in need of, I had to either drive him myself or pay the bill. Guess what, I drove him myself.

His mind isn't worth a dime, but his body just keeps on ticking. All he can think of is going home. He cannot for the life of him realize that he's had a stroke, he has Alzheimer's, he has a huge risk of falling, LIKE EVERYDAY, and that I simply cannot care for him at home. I cannot be calling neighbors over every day because he won't quit trying to go and falls down now.

When I pulled out of the hospital parking lot, he put his hands over his face and just cried. He was so glad to be out of there. He just wanted to go home.

Thank you Joe and the universe for making me bear the price of not letting Joe go home.

Every single person out there that reads this blog should stop and consider what plans you have for yourself.

• Which child are you going to task with taking care of you when you've lost your mind? 
• Do you have enough money to pay for that? 
• If not, is that child hooked up with an elder care attorney to protect them and you from Medicaid? 
• Did you take the time to educate yourself and them on what should happen?
• Are you just simply trusting things will work out?

If you're simply trusting things will work out, you're setting your children up for a world of heartache. Get over yourself and take care of business and don't curse your children with that.

So I drove my sobbing father away from the hospital and across town to another facility for him to live in.

Since I appear to be bitter beyond belief at the moment, just let me end with saying I hope to have my emotions under control sometime soon, and I hope to return to just putting up factual documentation of how the days are faring. 

Lola's Response

I talked to Lola honestly tonight (Sunday, October 9, 2011) about what's happening with her husband, my father.  Knowing that my mom also has dementia, I had no idea what to expect. Feeling that it was her life and her spouse, I felt obligated to, at the least, talk to her. I had slight expectations from their lifelong history. Her responses floored me.

Up front, I told her that if she did not want to visit her husband she would never ever see him again. Ever. She had no reaction.

I asked her if she would like to be with him in a nursing home with them together in the same room. She vehemently said no. My mother would prefer to never see her husband again than to live with him in a nursing home. After 66 years of living together.

Even knowing that my mother's mind has deteriorated, I must admit that I never ever expected her repugnance of a nursing home to override her desire to be with Joe.

My grandmother used to say that she couldn't throw the dishwater out without hitting Joe with it. My father hung around my mother and her family from before they were teenagers. My father and my mother were emotionally tied from before they were teenagers. That's 71 years at a minimum. 71.

To hear my mother without tears or emotion say she would prefer to never ever see him again than to live with him in a nursing home was astounding to me.

What kind of primal fears drive human beings that dementia cannot override?

An Explanation

I feel the need to explain a few things.

I am not made of money.

• I had to buy tags for my car - $120.
• The days I had to hire sitters for my mother to allow me to attend my son's wedding cost a total of $1,561.
• The days we paid for a hotel room in Frankfort were at least $267.
• We had to eat, preferably, 3 meals a day while there - at least $45 on the cheap per day x 3 days - $135.
• We had to pay for gas to get there and back - At least $150.
• I had to buy a dress appropriate for the mother of the groom - on sale around $50.
• Max had to buy a suit appropriate for the dad of the groom - basic acceptable $100.
• We had to pay our share of the rehearsal dinner the groom's family picks up - let's just say over $300.
• We gave the newlyweds an appropriate financial wedding gift - none of your business.
• I am spending around $30 every two days for gas to go to Paducah on, right now, a seemingly daily basis.
• Sitters for mother cost $9 an hour.
• It's not nice to constantly impose requests for sitting on relatives.
• Max's income covers our present debts and household expenses. He lives in Memphis. He has to be housed, fed, clothed and buy gas to get to work.
• My parents' income just barely covers their household expenses, grocery bills, and 72 hours ($648) of sitters.

The last four weeks have been a whirlwind of one week of dealing with Dad's bad behavior, his crisis &  unexpected illnesses with two hospital stays, a hopefully once in a lifetime wedding, arranging sitters, still maintaining daily living, and travel on a daily basis.

I cannot care for my father. The decision to put him a nursing home was heart wrenching in and of itself. He has been miserable, combative - hitting and kicking caretakers and verbally threatening them. His behavior has made him ineligible at most facilities. It's been a non-stop fight to find a place that will take him. 

He was only eligible for 20 days of Medicare; the first place that would take him didn't/doesn't have a Medicaid bed available, so a transfer was mandatory. Three places have refused him.

He IS NOT eligible for any present VA benefits. To become eligible his only disability is deafness. To be declared eligible he has to be taken to a VA facility - closest Marion, Illinois. To be taken there, he has to not be combative, healthy enough to not be in the hospital, have enough energy to withstand the ordeal, and be mobile enough to go where it's needed.

My mother cannot be left alone for more than a few hours at a time, thus needing a sitter. Again - pay or relatives. 

I am nearly 60 and cannot go like I did at 20. One person can only do so much, and I am doing the absolute best that I can.

Update on Joe 10/08/11

Am back from visiting Joe at Western Baptist, 5th floor, Room 577. Found out that's the stroke floor.

He is doing extremely well today. The draw in his mouth is gone; most of the slur in his voice is gone. He was lying in his bed asleep with his untouched, uncovered, stone cold lunch in front of him. I couldn't wake him so just sat down in a chair. In a bit a nurse came in to check him and managed to wake him up. He was delighted to see me and wanted to know why I didn't visit yesterday. Sigh.

After the nurse left, he drank all of the soda I'd brought him and started on eating the roast beef off the roast beef sandwich I'd brought. A different nurse came in and about had a fit because the speech therapist had said he had trouble swallowing. I just shrugged and told her he was on his 2nd cola (mine) and scarfing down roast beef and tomato and having no problem.

I sat with him for about an hour. He made no attempt to try to get up. He did want me to go into the next room and get his stuff. He couldn't process he was in the hospital as opposed to the nursing home. Even after I told him 5 times. He couldn't process he'd fainted and had a mild stroke yesterday. Kept asking me why on earth he was there and life was miserable and he wanted to go home. He did manage to remember I'd gone somewhere for a marriage but had no idea who or where.

He asked about Mama, and I got myself in a bit of trouble over that. I didn't want to tell him she's not processing he's gone, so I told him she was a little worried about him. That upset him because he doesn't want her worrying about anything. Can't win for losing, Jola Gayle.

I went by the other nursing home and picked his stuff up from there. In the end, he was missing 3 pairs of khaki pants, a bottle of Old Spice, a can of deodorant and his glasses. I left all the clothes they'd labeled as his that really weren't his in the closet. We can do without the Old Spice and deodorant, but I have to say I want reimbursement for his pants and glasses. Damn it. Now I have to make an appointment for him and take him to get new glasses. Not that he didn't need new ones anyway, but he can't see anything until then.

I knew not to take anything valuable to the nursing home, but seriously, at $269 a day, I did expect a staff capable of labeling patients' clothes and not losing their glasses. They tried to blame the glasses on both him laying them down somewhere and some other wandering klepto ladies. He's always been pretty good about not taking his glasses off except to sleep. If that's so common, a simple procedure like taking a picture and putting it in the file ALONGSIDE the list of possessions a patient checks in with should make it easy for personnel to keep up things like that. Most people don't get to that age without needing glasses, and you'd think that would be an SOP.

It was nice however to get a chance to talk to a few of nurses' assistants. They told me that in the last week, he had been adjusting well and finally allowing them to help him bathe, shower and shave. Perhaps with this last stroke he won't be such a problem as to be unplaceable in a facility.

I asked Mama today if she wanted to visit him, and she said she didn't think she could do that. Don't know what's in her mind, but we can't even get her to go out on the porch and sit outside on nice days anymore. She's become almost, if not actually, agoraphobic.

Update on Joe 10/07/11

It's been a while since my last post. Frankly, I've been worn out. However, today Joe had a mild stroke, and I know I need to update and document.

I got a call at 10:44 a.m.from Parkview Nursing Home that they had just discovered Joe propped against the wall in the bathroom sitting on the toilet after a large messy bowel movement. His speech was slurred, he didn't know where he was, and his mouth was drawn. They wanted to take him to the hospital. Yes, of course, do.

It took me awhile to get dressed, round up a sitter for Lola, and get on the road to Paducah. My 2 sitters were working their other job and going to a funeral, respectively. Aunt Agnes graciously agreed to sit but she had a luncheon engagement with someone she hadn't seen in two years at 11:00 but would gladly come after that. So I got Lola up and eating breakfast before I left. Mom does okay being left alone for a few hours, but she really is bothered if she wakes up and thinks she's alone in the house. Aunt Agnes has gone beyond helpful in helping me with this. I cannot thank her enough.

I got to the hospital before 1:00 p.m. and found Joe in the Emergency Room drowsing. His mouth was definitely drawn. His speech was slurred and very slow. He was totally disoriented and had no idea what had happened or where he was. It took all afternoon long to get various stroke assessments, CT scans, x-rays, and urinary tests done. Joe was lethargic, unresponsive unless forced, and thankfully not a bit combative this time.

There was, again, no evidence on CT scan of a massive brain event. However, I was told this time that mild events can take 3-4 days to show up on CT scans. Again, with no drastic change in outcome or treatment, an MRI was not absolutely necessary.

Finally, around 4:00 p.m. a doctor in practice with the other doctors who treated him a couple of weeks ago came into the room. He introduced himself with "I'm sorry to meet you under such sad circumstances." Uh, oh, this is not good my brain told me.

A quite intense conversation with Dr. Wilson ensued. He was the epitome of a doctor I admire - professional, compassionate, and totally honest. He laid things out honestly, which let decision making be done without misunderstanding. We discussed more of a hospice care for Dad than any other kind of treatment.

We have a DNR, no heroic measures and no feeding tube on Dad. He asked me if I wanted to discontinue medicines Dad was already on, i.e., blood pressure medicines. Okay, gulp, you just put the gun in my hand and asked me to pull the trigger.

That was far more responsibility for Dad's death than I am willing to bear. I can comfortably let Dad die as all humans eventually do. I cannot comfortably deny medicine he was previously on that I feel would actively cause his death. Dad will be treated with current conditions and kept comfortable and pain free.

When I finally got home after 5:00 p.m., Aunt Agnes and I got Mom a supper, and I checked my phone for messages. There were 3 that need responses. Great. You aren't supposed to have your cell phone on in the ER. So now it's after business hours on a Friday.

Dad was supposed to be evaluated this morning for transfer to another nursing home because Parkview doesn't have a Medicare room available for him at the present time. Dad's time where he was was fastly running out because the ward he was on is not a Medicare/Medicaid ward.

Because Medicare won't pay for both a stay in a hospital AND a room at a nursing home, I have to call the nursing home before 9:00 a.m. tomorrow to let them know if I want to personally pay $269 dollars to keep his room for him each day until he's released from the hospital. Gah. Since, OF COURSE, this happened on Friday, normal business people are off on the weekend, and he was supposed to be evaluated today for replacement, I'm flumoxed.

All I can do is try to get people on the phone starting at 8:00 a.m. on a Saturday and find out if his placement at the new place is assured, then call Parkview and deny the reservation if so. If I can't get affirmation from the new place, Medco, I have to decide to risk having to bring him home for a few days or pay $269 a day to reserve the room.

May I mention that with Mom's hours, I don't normally wake up until 10:00 a.m. and don't have a functioning brain until 11:00?

I arrived home this evening to a kitchen that was a total catastrophe because I was in the process of making a huge batch of chili when the first call came in. I left the pot of beans on the stove and a counter full of dirty dishes. When I got home I spent time on the phone retrieving voice mails, and calling pertinent people with updates. Then I tried to regroup. Then I finished the chili. Now I'm updating the blog. It's 11:50 p.m., and I'm waiting for Lola to finally go to bed, but if she doesn't go soon, I'm going to have to push the issue because I need enough sleep to make rational decisions in the morning.

Oh, yes. I must mention that in all of this, Lola hasn't once asked to visit Joe. She hasn't shed one tear. She seems vaguely concerned but totally disconnected from what is happening. That, of course, is mind boggling to me considering their total devotion to each other. I always felt in the way of their total devotion to each other, an obligation they thought they should fulfill but really resented. All I can assume, for what it's worth, is that Lola's mind is either gone enough she doesn't realize what's happening or it has refused to process a reality that she can't accept.