Iceberg

The Dementia Chronicles: Head & Shoulders (knees and toes, knees and toes)

I managed to take care of Mom duties while fighting the flu across two weekends but by the second weekend my flu had turned to infection on me and I would up in urgent care with one left eye infection, one left ear infection, a sinus infection, the beginnings of bronchitis and just for kicks and giggles one cold sore on my upper left lip in that one spot that I get cold sores and it was going for broke and swelling. I came out of urgent care with six prescriptions and told this would be three weeks to recover from - so I'm really still recuperating here).

This last weekend I went for my usual Saturday visit a bit behind schedule. I allowed myself to loiter in bed just a bit. And it was raining so my speed was on the cautious side. When I arrived in Eudora I stopped to write the check out for the city utility bill (water/trash/sewage/electricity) and drop it off. Also wrote out the check for lot rent and stopped by the bank to deposit a check from a banking snafu because somewhere along the line with the county property tax folks and their bank the check went through at $500 more than it should have and they sent a check to me for the difference. So it needed to be deposited back into her checking account.

I tell you all of this because with those minute delays I found my mother walking up the hill on 10th Street bound for Casey's General Store. I stopped and tried to get her into the car. But no. She HAD to go to the 'store.' I'm learning here so I let her go (it was not raining in Eudora for which I am grateful), went down and dropped off the rent check, got her mail and swung back around and went to Casey's to save her the walk home. She was still there with a carton of milk and a Little Debbie cake. I drove her home and we had the usual discussion of going to the grocery store. (I don't think I need anything at the store. Yes, you do. It won't take long and we need to pick up your prescription. I'm not on any prescriptions..... you get the idea.) Once she decided she needed asprin (this tidbit will go somewhere) she was game.

So we stopped by the pharmacy. Then we went to the grocery store where we took our usual trek through the market and got her aspirin and headed home. The entire time I am with Mom she keeps reaching down her shirt and rubbing/digging at her chest. I ask her what's wrong. She gives me fill in responses. When we get home I make her show me her chest. It was bright red with some bumps and scared the heck out of me. I declare we are going to urgent care. My tone must have indicated that there was not going to be arguing with me on this one because we unpacked the groceries and she did a bit of grumbling but went along.

After a 1.5+ hour wait (it's urgent care, it's cold/flu season and we are walk-ins. They are booked solid. I expected a wait). Mom doesn't wait well anymore. She kept asking how long? (Mom, we're walk ins we have to wait our turn) Why are they going before us? (Mom, they had an appointment)? She was antsy. After a while couldn't sit still. Attempted to 'read' a magazine (flipped through it fast and put it down). I felt for her (whille reading a book on my phone via kindle app).

They finally call use back and the nurse says 'oh you do have a red mark.' Uhuh meaning I was dead on right to haul her to urgent care. I had been telling her not to rub at it (but it makes it feel good). The nurse told her not to rub at it because if it's infection she could be spreading it around. While taking vitals they weighed her. She's lost about 6 lbs (or a lb a month) since seeing her primary in mid-June. The doctor sees her. he also tells her to stop rubbing and touching it because he thinks it's an allergic reaction and the rubbing is making it worse/spreading it. He sends two 'scripts to the pharmacy in Eudora (1 pill, 1 cream) and recommends that I make an appointment with a dermatologist for her (still on my to do list).

During her explanations (the best she can come up with and I can determine something happened when she did yard work, which wouldn't surprise me one bit) she kept saying she was putting hand lotion on it. She said it happened a couple of weeks ago - but in the mind of dementia where time is warped that could be two weeks, two days or two months.

So we leave, stop by the pharmacy again and I take her home. At home, she picks up a bottle and says to me see I put lotion on it. I stare at the bottle. A white bottle of Head & Shoulder's shampoo. I tell her that's shampoo. To which she responds, "But it says head and shoulder's."

Ya know. I really could not argue with that logic. I could put myself in her shoes, with her memory issues, standing in the aisle at the grocery store looking for hand lotion and picking out head and shoulders among the array of stuff on the shelf and assume it was hand lotion.

I'll be bringing appropriate lotion for her next visit and making one of my nifty vanishing tricks with the offending shampoo bottle (meaning it will be leaving the house without her seeing me do it) next visit.
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The Dementia Chronicles: Yeah, it's gray outside

I know, it has been a while. I confess to getting sucked into work stuff and Nanowrimo November and well here we are.

Just had my morning call with mom which went something like this:

Mom: how are you?
me: kinda crappy
mom: yeah well it is gray outside (it is always gray, even when it is sunny she will tell me it is gray or dark).
me mentally - okay so much for my health

Our conversations often go like this. Niceties. Nothing of substance. Once recently I mentioned something funny my cat, Spooky, had done. No reaction. I used to live across the street. Mom knows Spooky. 2 or 3 years ago Mom 'cat sat' for me when I went out of town in November for business and then spent most of the week of thanksgiving with her.

I miss real conversation with my mother.

I also notice that Mom has a whole lack of emotional response (unless I get really upset and start yelling which serves neither of us and I am trying to teach myself not to go there - it is difficult). The blank face. The distant stare. Okay, so the distant stare last Sunday (yeah I was sick Friday night/Saturday with a whole GI bug) noticed a cart in the grocery store parking lot left with a bag in it. yes I'm series. She saw it from inside the store through two windows.

She's back to 'picking.' This time with leaves. I was expecting this, but it is a bit overdue and the Sycamore trees in her neighborhood are late droppers. I am concerned that she's out doing leaves in the damp, the wet, the mud. She's had the same pair of sweats on for at least three weeks and I told myself this week due to a) fatigue, and b)picking mode that it wasn't worth the effort to try to get her to change. Maybe next week.
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The Dementia Chronicles: Legalities

Oish.

So I read through the documentation from the court that my attorney linked me to. And followed instructions. So now I am faced with having to take Mom's checkbook away from her because this last weekend I stopped by the bank and put a copy of the guardian/conservator's letter on file (as instructed by court documentation - specifically within 30 days). Yeah. So legally Mom cannot get money from her own bank account and I must come up with ways that she understands to allow her to spend (get things at store etc) with me 2.5 hours away where the checkbook will now reside.

I have no qualms about sneaking the checks and checkbook away from her. Since I have to talk her through the whole check stuff at the grocery store each week it is probably time. It just hurts like heck to have to give your own mom an allowance.

And yes, this is another push in the direction of putting mom someplace. To those who keep asking - I'll get to it. On my time frame. Preferablly without losing my mind during a critical time of the year at work. The joy - if you will - of winter is that it more or less isolates (I know I know I hate it) Mom at home during the cold weather. My ongoing theory is that the more I isolate her, the more likely she is to not fight when it comes time to move her. That or I'll need an army of friends/family to help me with that move (And though I loathe asking for help - on this front I will!).

One thing I have noted lately is people in Eudora - like at the bank - telling me 'well we noticed...' By the way the folks at the bank have been awesome.
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The Dementia Chronicles: I Don't Use That Light

So I survived physical inventory another year. And got in my car Saturday morning headed west. Spectacular drive through the fog more or less all the way to Eudora. Fun stuff.

Mom has developed a disconnect, one I've been aware of for a bit now, between lights not working and replacing light bulbs. Back on the 18th I flipped the light switch for the ceiling light over the kitchen sink. Nothing. Made a note to get light bulbs, couldn't find them at the store so I got them the following week in CoMo and brought them with me. Then climbed up the step stool and wrestled, blind, with the light sockets. Out wasn't so bad. Trying to get a new bulb into the socket when you cannot see the socket is another. Add in perched part on stool, part on counter and yeah - fun.

So Mom tells me while I'm resisting the urge to cuss like a longshoreman at whoever designed the over the sink lighting layout in front of mom, "I don't use that light." I gave her a look, thinking 'yes you do. you just have lost the ability to change lightbulbs and you are filling in again.'

Don't ask me the technical term because I've already forgotten it. But, yesterday during a visit to my psychiatrist, who is a Godsend right now because I discuss Mom a lot these days during out med check visits. He told me that people in this state DO recognize that there is supposed to be an answer and will - as I put it - fill in. Give an answer, the first thing that comes to their mind.

She's also got a dirty clothes issue going on. I have seen the same sweatshirt with stuff spilled on the front since October 12 along with the same pants. She looks like she's rolled in the dirt. I've found (and thrown away) socks that were black on the bottom - holes walked into the bottom. I know how this happens (with the socks). Mom goes out to get the paper or to pick up that one whatever and ends up walking through dirt and mud for hours only in sock feet. I caught her trying to do it before I left on Saturday. I made her go in and put on shoes before I left.

I don't know if the disconnect in her brain is at the 'these are fine they aren't dirty I can wear them and save on laundry' end. Or if it is 'I keep wearing the same things because I can't remember how to work the washer and dryer.' Either way, visits to Mom may have to be extended long enough to do her laundry, if not once a week then every other week. I also need to check her sock inventory to see if she's got enough. And I might have to take her shopping in the coming weeks to buy her some new sweat pants and sweatshirts to give her more options of things to wear. And I am thinking in terms of maybe the clothes need to be set out on the cedar chest in the bedroom where she can see them instead of in drawers. At least for the daily things.

On the moving Mom front. I made a call on Monday to a facility that I knew from a visit to them in August that took medicaid patients. Note that is medicaid not medicare - they are different and medicare/BCBS covers little for housing/caring for a dementia patient). There is a new administrator. She is currently not taking new medicaid patients because the state of Kansas is months behind in payments to the facility. I am furious. Not at the facility but at the government.

While Mom is not on medicaid, I have to face the financial reality of placing her in a facility and paying for it. This is a difficult decision to begin with and when you know there is limited income on her end and you personally are not rolling in the dough, well, reality check is in order. I also consider it irresponsible as the court appointed guardian/conservator to not consider the long term issues.

So I am back to considering options and researching. It is a busy time of the year for me. Moving Mom in the near future was going to be difficult to begin with. The disconnects I'm seeing above make it clear to me that she is degrading and will not be able to care for herself at all at some point. I had hoped I could make it through to March when the work schedule calms down. We'll see. I am taking this one day, one step at a time.

On a positive note - the pill organizer worked. In Mom's way with the empties stacked to the side. But it DID work!
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The Dementia Chronicles: You're My Hero

Thursday October 16 went well. And short. Really. I met my attorney and the guardian ad litem (who didn't have to be there, but was because she had something else in the courthouse shortly after the 10:30 court time). We went into the courtroom. Waited on two people ahead of us and went to sit at a table with the judge. He read the pleading. signed the court orders. I waited afterward for three notarized copies of letters from the court. I am now court appointed guardian & conservator over Mom.

So for the third time in a one week period, last Saturday I headed to Eudora/Lawrence. I was concerned that due to physical inventory at work on Oct 23/24 I wouldn't get over to check on her the weekend after and wanted to satisfy myself that all was well before a possible two week gap. I also wanted to deliver a 30 day pill organizer to her. The doctor recommended one. She protested. At times I am my mother's daughter and ordered one anyway. She liked it. Seemed to understand it. I went over it three times with her. We will see if she is actually using it next time I go see her.

While there we went to the grocery store and picked up her prescription refill. And yes, I put pills in the organizer through Nov 1. I also discovered that (duh on my part) Mom is out of iron and heaven only knows how long she has been out because it hasn't been on my radar screen. Oish. Mom has a long history of anemia. So I know she should be taking iron. When asked, as is typical, she said oh well I must not need to take it anymore. Pat excuse for some things.

Before I left, when saying goodbye, she told me that I was her hero. Awww and okay Mom whatever you say.

By the way, I didn't say anything but I spotted one wayward umbrella on the desk under the phone before leaving. And yes, I left it there. Do you really think I want Mom walking around in the rain?
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The Dementia Chronicles: The Umbrella Thief

So I switched up the schedule a bit this week because Mom's Guardian Ad Litem meeting was Monday. Sunday I went to Mom's and did the usual check in. I got there in the afternoon. She was napping (door unlocked) and not interested in going to the store until I told her she was out of Hershey's kisses. Well! That prompted action and next thing I know she's checking for what she might need at the store.

I leave her and go to the Motel 8. It is not glorious but it is convenient and it kept me from an evening meltdown over weird behavior and arguments over temperature in the house while I sweat to death. I picked her up yesterday morning - yup she had to be reminded again even though it was on her calendar and I had told her when I'd be there. I arrive about 8 am. It is dark, cloudy, and rainy. She's napping on the sofa (door unlocked) when I get there.

As I try to get her ready to go. No she didn't want to change clothes. She could wear a sweatshirt over her top. I pointed to the sweatshirt which she'd had on the day before. A sweatshirt with coffee or Pepsi stains down the front that I let her wear to the store Sunday. I had to tell her she couldn't go to a lawyer's office in that shirt. She wore a coat. I had to prompt her to comb her hair.

She went looking for an umbrella because it was raining. This made sense. Until she can't find out (yeah probably in the car) and says the kids probably took it. I asked what kids. She said my kids. She, in that moment, did not connect me to being her child. It hurts but I recognized it as the disease and not necessarily her. I did tell her, Mom I'm your daughter, I didn't take your umbrella. And my sister hasn't been here in almost three years so I doubt she took it. Why would she do that Another example of filling in excuses for not being able to remember.

Guardian Ad Litem meeting went well. At least for me. Mom demonstrated definite memory loss and lack of understanding. She knows I live in Missouri but couldn't remember where my sister lives. She couldn't remember my aunt's name, her only living sibling. She couldn't name the town she's lived in since 1981. Could not name where she banks. I was told that Mom would not have to attend the court hearing on Thursday so that is off my agenda. I still need to be there.

One step closer.
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The Dementia Chronicles: "Presents" for Mom

So on my last visit to Mom I brought along some 'presents' for her.

First was a fireproof, waterproof, lockbox. Happily it does not fit under the bed and now resides in a different location than the metal box that things had been in. I became concerned when a neighbor helping her with a plumbing issue, who knew about the box, helped himself to a roll of quarters in the box. While this is no big deal in the scheme of things it opened the door to potential predators. And, there are papers stored in that box as well. Papers the neighbors or others don't need to see. Also, my stepfather collected $2 bills. I put the $1 1935 silver certificate I discovered among mom's papers in there and there is a slew of half dollars and silver dollars. I feel safer now that the whole mess has been locked up.

The second gift I ordered off of Amazon. It was two recycling bags. Sturdy. With handles. It should keep her pile of newspapers in check. I left one with her and took the other with me. I'll switch them out when the first fills and dump recycling on my way out of town in the future.

Finally, I just finished ordering a monthly pill organizer. Mom doesn't want it. We discussed this at the neurologist's office in September. She's getting one anyway. The great giftie says so. Somehow I suspect she'll think it is the greatest thing ever. Or not. Either way I can load a month of her pills up by day - with separate boxes in each day for morning, noon, evening and bedtime. For me this means a bit more assurance that she's on her med schedule and more importantly I'll be able to keep track of her vitamins and know when to buy more. I've started buying her vitamins when I go shopping so i can get a better price than the store in her small town.

Next week, Monday is her guardian ad litem visit. And Thursday is the court date. To add to my load we have auditors in at work and it is the week before physical inventory. I hate rushing life by, but I will be glad when all of this has passed. I've got at least six mental lists going in my head at any given time. Granted, all having guardianship is going to do is add to my lists. Guardianship signals, to me, the ability to move forward. Not that I haven't been, but it has rather felt like a holding pattern of late.

In other news Thursday on the way to work I hit...something. Possibly a racoon. My car suffered damage to the bumper. Car will be dropped off for repair etc on Monday and I will pick up a rental. Oddly, while something like this would have thrown me off kilter in the past, it didn't in this case (okay aside from being pushy with the claims adjuster who didn't call me back). I've decided upon reflection that this journey I'm going through with Mom is teaching me resiliency. And that I have to roll with what life throws at me. Even raccoons.
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The Dementia Chronicles: Potties and Progress

It's been a bumpy week or two.

Friday September 26 was mom's neurologist visit. I learn before this that the court dropped a date on the calendar - one where no way no how can I make it to the hearing. Furthermore the guardian ad litem hadn't been appointed and the visit scheduled. My attorney tells me this happens all the time. It will get rescheduled. She gave me the guardian's information once she had it and I went into 'nag mode.'

Good thing I was in 'nag mode.' Guardian's office was waiting to hear the rescheduled date from the attorney before contacting me. My attorney knew I had time constraints this month and gave me their information. Then I could schedule Mom's visit to my time needs; tell her when it was so that she could then reschedule the court date based on a) the guardian visit and b) my time issues. All is well because both dates are now scheduled.

Sunday September 28, the neighbor emails me. Mom came over at 6:30 in the morning. Water was spraying in the bathroom. He turned it off for her and fixed the issue after work. This incident rather breaks my heart because Mom knows how to do this. Well - she used to. She taught me.

When TV's had tubes, Mom would remove the back of the TV; find the offending burnt out tube; remove it; take it to the store; buy a new one, and replace it. Voila, fixed TV. To know she is in a state where her mind doesn't 'get' to turn off the shut off under the sink or behind the toilet is painful, but one I must accept.

Then on October 1 I call her. Typical morning call. Only instead of getting chipper Mom who talks about the weather (same conversation each time more or less), I get NotMom who is in 'We' mode. "We had to use the toilet in the other room last night." I asked if she had contacted the neighbor. Mom started talking about the woman down the street. She knows about these things. She's going to help me. We're going to move the toilet seat (not the toilet mind you - the seat). So on my crazy day of month end close I contact the neighbor and have him check on her. He, thankfully, took care of the issue. (The we thing always freaks me out a bit and I wonder what is going on in her head or world that prompts use of we in these odd circumstances)

My day went downhill from there. It was just normal month end madness combined with having something (actually someone's problem) unexpectedly, a report that ran amok on the system and other glorious snafus that mad it a very stressful day.

Thursday was moderately improved. I sort of dreaded seeing Mom on Saturday but it was a good day and we had a chat about her upcoming guardian ad litem visit. I doubt she'll remember. I keep telling myself one step at a time, even though this is often painful.
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The Dementia Chronicles: Looking Back

I have spent the past couple of months going through every paper in Mom's filing cabinets; scattered across the vanity, and strewn across the bar between the kitchen and living room, not to mention anywhere else I found stacks of stuff. I found myself numerous times sitting on my sofa with giant cartoon question marks above my head as a muttered what the...

I also found my mind tracking back in time fixing on this moment or that moment two years ago. Three years ago. Longer. Seeing with the clarity of hindsight the hints, the clues, the indicators that she was off. I remembered the pings on my radar that something was off. I fight the urge to kick myself. I go back through November 2012 when I 'knew' she was off. When after my sister and I left she had an accident. An accident I now consider to be the first known incident of her 'running.' I knew. And in the depths of denial I allowed myself to be talked out of 'something is wrong with mom' by my sister. I don't blame my sister. I do at times fault myself for not listening to the internal radar God gifted me with and following through. Especially after the accident.

However at the time I was in a dark place emotionally; in denial about Mom and had closed off my intuitive powers. Maybe closed off is a bad term. Tuned out of them is more like it. Since then I have been re-honing my skills in that area. And looking back at the paperwork I can see the aha moments where the intuition had pinged and I had ignored. Which, oddly, helps a bit in retuning to intuition now.

I can also see back beyond the early indicators of Mom's dementia past the facade my mother and stepfather put up. I see the financial reality that went on in years that I lived right across the street or in the next county. I see bounced checks from a woman I thought had it together. I see bad financial decisions (like my stepfather buying a fancy new truck that he didn't need that now shorts my mother on funds that will be required to take care of her). I see credit card debt used to pay medical bills (or wants). Big medical bills because he had COPD. I see money transferred out of savings or 401ks to the checking account to pay the bills.

I've spent years, decades, kicking myself over my own stupid financial decisions and the monumental amount of time it took me to dig out. Granted, my decisions were in my 20's and early 30's aided by a lousy job market and a stepfather who wanted me out of the house before I was ready and an environment at home I needed to escape once I'd graduated from college and had a job - any job. And I get the hiding it. The not talking about it. And I come from a family that culturally is big on not talking. Not about the big stuff. I'm an emoter in a family of stoics who gave me a clear message that being a cry baby was not acceptable. A fact that led to other self-destructive issues that I still fight.

And the knowing? The seeing? It helps. For me. For me to heal inside. No, it doesn't make dealing with caring for Mom any easier. That is rough. This week wasn't a good one. I spent Sunday going back over things to see the mistakes I made and how to correct so I don't lose it. Because losing your temper with someone who won't remember is futile.