[personal profile] drscott
Just got back yesterday from a week in KC. My mother has been in increasing trouble, and spent Saturday night at the hospital after an episode of extreme back pain; I spoke to the ER, and they couldn't find a reason for the pain, or relieve it by use of the usual painkillers, so they were looking for other causes. By the time I got there the next Saturday night, she had been home for days and said she felt fine...

I've posted before about her increasing mental fuzziness. I noticed maybe 8 years ago that her driving was becoming more tentative, and it took her longer to correct when she noticed a problem. Then about four years ago, she sent me a collection of photocopies of her tax data that was full of duplicates, half-pages, and missing data. My mother was a secretary, and highly detail-oriented and precise; all that began to disappear, and she lost the ability to type maybe 5 years ago.

This last month had several problems to go along with the hospitalizations and ER visits (5 in 6 months.) She tried to renew her drivers license, and was stymied by both a sign recognition test and the attempt to write a check (she wrote words in the amount box and failed to date it.)

Here's some material from another post:
I had planned to leave Saturday for a week in KC to hopefully see some assisted living places and wrap up the financial work. One of my mother's neighbors called us Saturday morning -- my mother had called 911 complaining of extreme pain and been taken away in an ambulance. My mother says she thinks she fell but doesn't remember, but she was in a lot of pain, which the painkillers the hospital gave her didn't relieve. I spoke to her the next day (when she had been assigned a room) and while weak she sounded okay; tests showed nothing broken and no explanation for the pain. They were going to assign her a visiting nurse and send her home. It didn't sound like it would be useful for me to go early, so I'm going to stay here and do prep for the tasks; at the very least this may have weakened her resistance to assisted living, since it's obvious even to her that 5 ER visits in six months and the possibility she'd injure herself more seriously and spend days waiting for help means a more supportive facility would be a good idea. But she's afraid....

The first thing I did when I got there (since it was a weekend) was start cleaning the fridge, which was a horror of forgotten leftovers and expired food, She only sees and uses the front row, so anything pushed back stays there forever. All she had available to eat was Perkins restaurant leftovers and processed sugary foods like dried fruit and Twinkies, plus cookies and candy. So I triaged two shelves and cleaned them, then went to the store to buy some food for the week.

Monday we went to her doctor. I went in with her and explained what we thought was happening with her increasing dementia; the doctor was uncomfortable since his usual mode is to process elderly patients, proscribe drugs, and bill Medicare or their insurance company; making longer-term diagnoses or being proactive is not their role. He told me he'd write a letter certifying her as unable to handle her financial affairs, and made an appointment for a brain MRI Thursday. He also wanted to start her on Aricept, an anti-Alzheimer's drug that might slow the progress of the dementia, but required blood testing; the phlebotomist could not get more than half a vial of blood from her because she was too dehydrated.

Tuesday we toured Wexford Place, an assisted living facility a few miles west. It was essentially an apartment building with additional common areas for dining, entertainment, and recreation, including a small pool and gym. The marketing director (salesperson) was a woman about my age (they all were) and quite sympathetic, we had lunch there, which included a tasty mushroom Asiago soup. She seemed to like it but commented she loved her house and would never leave.

That evening we had dinner with Ralph, her bf, at Perkins, where they eat three times a week (and she lives on the leftovers the rest of the time.) Ralph drives over from Hickman Mills (a long way) often to pick her up and go places. She had Hawaiian Pancakes, an odd dinner dish with pancakes, pineapple, and Maraschino cherries on top; I later showed her the nutritional info on their web site, including the 180% of daily allowance of sodium.

Wednesday we toured Avonlea/Kendallwood, assisted living a bit older and more nursing-home like. But while older and with smaller units without kitchens, residents seemed happy, and there were many frail people obviously enjoying themselves. They have a Wii bowling league networked with other senior facilities and were practicing for an upcoming defense of their championship trophy. This place was about $800 a month cheaper, and threw in a weekly bath visit and daily medication checks at no charge, which is exactly what my mother needs.

Then it was a quick stop at the DMV, where the sole (and very patient) Latino clerk tried to help her renew her license. He picked up on the purpose of the visit, which was to show her she couldn't pass the test; they accepted the eye doctor's certification of her visual acuity at 20/20, but she could not identify any sign but a stop sign in the optical testing box. This may be due to inability to retrieve the words for the signs, but it's far from clear she understands what they mean anymore. She left thinking that maybe if she studied more she might pass; I left certain that she shouldn't.

Then off to her eye doctor, where we discussed her problems understanding what she sees. He scheduled a "lens polishing" -- she has had artificial lenses put in a year ago, and the doc said they had a film of cells on them that might be obscuring her vision slightly. The procedure uses a laser to remove the cells. Scheduling transport for her will be another job...

Thursday we visited my cousin Karen and her husband Mike in Pleasant Valley, then attended 45 minutes of a KC Banjo Band concert at a nursing home nearby (Ralph-the-bf plays with them.) now *that* was a depressing environment, and is what my mother thinks of as assisted living -- lots of very frail old people barely able to move around. Left early and got her to NKC Hospital for the MRI on time.

Friday it was back to the doctors to try to get blood again; I had reminded her to drink, and she had maybe a quart of water that morning, so there was no problem. The doctor had the letter available later in the day.

We dropped in at the store to buy toilet paper and a print cartridge (hers had dried out.) I lost her in the store and looked everywhere, but she had left the place I left her, and I found her finally in the front of the store buying the toilet paper with cash because she couldn't find her credit card.

I had contacted the assisted living place my cousin Karen mentioned, Riverstone, new and quite resort-like, so we rushed over there for a tour when I called from the store and the salesperson told me we could only see it if we came right then. So we rushed over and got there a bit after 11, too late to have lunch with them, but toured the place -- two years old, like an enclosed town center with wings of apartments leading away. Very much a cruise ship on land, with "anytime dining," entertainment in a 150-seat theater, 24x7 food service, a staff nurse and very cheerful, happy residents. It was eerily Stepford-like, or like the Truman Show. The one downside is that it's further out, almost by the airport, which would mean even more driving for Ralph.

I arranged for my mother and Ralph and I to have dinner there that evening, and chaffeured them out; we arrived a bit late so many diners were already leaving (at 6:30!), but they enjoyed the free food and the attentive service (by high-school-aged kids.) We toured a unit for Ralph's benefit, and the pronounced the place lovely.

But of course my mother still is too afraid to go; she thinks Ralph will stop coming to take her places and she won't like being away from her home. She didn't use to be so fearful, but now her horizon is smaller and smaller, and she barely remembers the daily frustration of not finding things, harassment from bill collectors (she hasn't paid a bill by check in months, and the many hospital; bills are not being paid.) She is so far gone now that she denies there is a problem, pretending she can take her pills properly and do anything she wants. She now says, for example, that she doesn't write checks because she doesn't like to, not because she can't...

I pretty much have to make her go. Her dementia is caused by small strokes in the finer vessels of her brain due to high blood pressure and atherosclerosis, and any error in medication creates conditions causing more damage, making it even less likely she can safely manage her medication; she went to the ER a few months ago with bp of 300/something. Her only chance to stabilize is under daily supervision, and she needs to maintain her current social circle and friends, so assisted living near her home is the only option.

Everyone (neighbors, relatives, my brother, friends) except possibly Ralph (who I should probably talk to directly) thinks this is a good idea. I am just proceeding with it despite her resistance, and will have to go back to help her pack and move when a unit opens up. I've already put a deposit down on the Riverstone unit. And after a few months, I'll have to empty out and sell her house.

Date: 2010-08-30 06:49 am (UTC)
From: [identity profile] joebehrsandiego.livejournal.com
Curtis: God it pains me to read this. With some minor details changed it's what my sister and I experienced.

I certainly can't give you any advice that you haven't thought of already, but know I'm wishing you the best through all of this.

Date: 2010-08-30 10:17 am (UTC)
From: [identity profile] fj.livejournal.com
I am so sorry this is happening.

Date: 2010-08-30 10:29 am (UTC)
From: [identity profile] billeyler.livejournal.com
Like Joe said, this is painful to read, even to us who aren't directly involved.

You're tons more proactive than most, which is going to make it even more difficult as time goes on. The children becoming the caretakers is generally a norm, but this gets so much more complicated by dementia. At some point, she's going to start getting really angry with you nearly constantly because of her own frustrations.

This Ralph sounds like a complication. There's a bit of a backstory missing here on his relationship with your mother. He surely must be aware of her slow failing, or is just in denial himself? Didn't you say there was even another boyfriend in the mix there somehow?

Good luck to you on this long journey, Curtis. I know you have a big support group and won't have to go through all this alone.

Date: 2010-08-30 05:34 pm (UTC)
From: [identity profile] dr-scott.livejournal.com
Ralph was a work friend of my stepfather's at UPRR (where they all worked.) He's know my mother for 30+ years. He started taking her out a few years ago - his wife is dead and they enjoy each other's company. The other bf she sees occasionally, mostly for plays or shows on weekends. In both cases it's just companionship....

Ralph is pretty sharp, and just from seeing his reaction to certain things I'm pretty sure he knows she's getting unreliable, but they haven't talked about it as far as I know. I should try to call him but getting him to answer his phone is hard....

Date: 2010-08-30 11:58 am (UTC)
From: [identity profile] omero-hassan.livejournal.com
It's an unbelievably hard circumstance. When my mother went into the home, it was a much more emergent situation, and she hated it -- really hated it, and there were some ugly conversations and accusations. I hope your mother is able to assess the evidence more clearly, and she's lucky that you have the resources and ability to help her navigate this change. The thing that scares me is that it's hard to see that coming in one's own life.

Date: 2010-08-30 05:35 pm (UTC)
From: [identity profile] dr-scott.livejournal.com
Its too bad she didn't move into one of these places ten years ago -- she would have had a much better life relieved of the chores of cooking and cleaning, and probably be in better shape now. Then there were few such places, and she bought a new small house instead. And now she doesn't grasp enough to realize something has to change.

Date: 2010-08-30 01:33 pm (UTC)
From: [identity profile] abqdan.livejournal.com
Oh this is so hard for everyone involved. I'm glad you were able to make some headway. I'm glad you have Paul to support you; it's so difficult to deal with aging relatives, and a good personal support system is so important. Good luck in getting her settled in Riverstone and dealing with all the other stuff.

Date: 2010-08-30 05:35 pm (UTC)
From: [identity profile] musicbearmn.livejournal.com
My heart aches for you on this, as I have been and continue to be there. We had to have the family talk three weeks ago about the "what if" scenario from this spring happens again and the nursing home calls and wants to do electroshock therapy again, and the answer will be no.

I will keep you in my thoughts during this time. Hang in there, and know you have a support team here on LJ who are walking with you and Paul.

Date: 2010-08-30 11:46 pm (UTC)
From: [identity profile] ptownnyc.livejournal.com
This sounds a lot like the journey we have been on in my family over the last few years. Trust me on this - if you get her into assisted living it will make all the difference in the world for your family. Do what you need to do to make this happen.

Date: 2010-08-31 02:07 am (UTC)
From: [identity profile] beastbriskett.livejournal.com
You're doing everything you can, and in your own thorough and pragmatic fashion. You're a good son, and your mom is going to be better off when this is done. It's wrenching and difficult to see this unfold with someone you love, so I thank you for sharing this. You're in my thoughts.

Date: 2010-08-31 03:21 am (UTC)
From: [identity profile] clintswan.livejournal.com
wow

*sends you power vibes*

Date: 2010-08-31 04:51 am (UTC)
From: [identity profile] allanh.livejournal.com
I'm sorry that you have to deal with this, but at least you're doing so with (probably a lot more) grace & composure (than will I). All parents should have sons as thoughtful and thorough as you.

My mother (80) has similar issues to yours, but not as far advanced yet. Specifically increasing fears coupled with shrinking horizons.

Thus far, she's quite able to take care of herself, and there's nothing moldy or expired in her fridge...but I'm seriously wondering how much longer this will last. There have been a number of odd little incidents where I can see metaphorical clouds gathering on the horizon.

How long did the Riverstone folks say they thought it would take for a unit to open up?



Date: 2010-08-31 05:02 am (UTC)
From: [identity profile] dr-scott.livejournal.com
They have 1-br units available now, but the small 2-bed is about the right size to allow her to feel the same space she has now. The salesperson pitched moving into a 1-br which gives you priority over nonresidents for larger units, but I don't want her to be moved twice. The list for the 2-brs has maybe 6 people on it, but some of those people would turn it down if offered. Best guess on the wait is 2-4 months.

Everyone has increasing loss of memory and gaps as they age, but the normal response is to be aware of them and correct or find new ways around them. Worry when you start seeing symptoms and she won't recognize that a mental lapse has occurred; as for example this visit, when she commented she wanted me to look at her TV, and lead me to her telephone base unit. I told her it was a telephone, not a TV, but she insisted it was so a TV, no longer having enough connections around it to recognize the error. At Christmas I realized she didn't know the difference between a DVD and a videotape, and couldn't understand how to play a DVD any longer.

Date: 2010-08-31 05:07 am (UTC)
From: [identity profile] allanh.livejournal.com
Yeah, my mother is losing functionality on the computer on a random basis. Just before I got her a new computer, she was in tears because she couldn't remember how to turn on her 10-year-old computer...which had a yellow and red sign with an arrow pointing to the power button.

I'm betting the reason she hasn't called me for any computer help recently is that she's stopped using her computer completely. I could be wrong on this...

Date: 2010-08-31 05:14 am (UTC)
From: [identity profile] dr-scott.livejournal.com
Ah, yes, that's the early signs. There are no social cues to electronic devices, and the grammar of buttons and controls is one of the first things to go when there's brain damage. You are probably right: she no longer tries since she can't get over the hurdles of using the machine.

The electronic industry, unfortunately, is run by engineers not UI specialists. The old-style thermostat with a big dial and a pointer was easily understood; it has to be complicated a little for AC (now you need two pointers, one red and one blue!), but most thermostats now use an LCD screen with tiny icons to indicate state and a few buttons with almost invisible labels for control. These are nearly impossible for weak eyes and minds to read and use.

Date: 2010-08-31 07:34 am (UTC)
From: [identity profile] fuzzybearcub.livejournal.com
My grandmother had been living alone in a relatively isolated apartment for 15 years with barely any social contact (despite being extroverted and social by nature). My parents begged her to move into a retirement community so she could at least have friends and be more social, but she resisted for a long time. Around 2005-2006 it got to the point where she was spraining / breaking her arm and/or ankle at least every other month. She finally realized she needed easier access to a doctor in case something happens and begrudgingly agreed to move into a retirement community. In 2007 I helped her move.

She complained a lot during those first few months, but eventually she made a few friends and started attending social events and even discovered some artistic talents she never knew she had. Now she's a lot happier for it.

I cannot begin to imagine how your mother is feeling, but rest assured that she will probably be very happy at Riverstone. Just keep reminding yourself that this is all for the best. *HUGS*

Date: 2010-09-11 06:01 am (UTC)
From: [identity profile] hotelbearsf.livejournal.com
While it's heartbreaking to see your Mom decline I'm so glad you're making her move into this place. It's not only peace of mind for you but her health will greatly improve now that she doesn't have to take care of herself.
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