All about Grandma - Lewy Bodies Dementia
Oct. 18th, 2007 07:34 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
valis2The past few weeks have been stressful and hectic for my family. My grandmother was diagnosed with dementia with Lewy bodies just about a month ago. It's a scary disease--a combination of Alzheimer's and Parkinson's. The brain becomes riddled with inclusions, but unlike A's or P's, the inclusions affect the entire brain overall, thus depriving the victim of both mental and physical functionality.
About the disease
LBD is the second most common form of dementia, according to some, but it seems to be a rather murky disease; I've read several stories of misdiagnoses (it mimics the symptoms of mini-strokes and both Parkinson's and Alzheimer's), and I've also read that some doctors, nurses, and nursing home staff aren't familiar with it. It causes intense hallucinations, difficulty in walking/maintaining balance, and wreaks havoc with memory. Eventually the victim is reduced to a vegetable, unable to move or interact with his/her environment. There seems to be some sort of connection between restless sleep (REM sleep behavior disorder) and LBD/A's/P's. Two-thirds of people who act out their dreams and are diagnosed with REM sleep behavior disorder develop one of these diseases. There are anecdotes of people jumping out of bed and tackling dressers, knocking over lamps, and thrashing about regularly in bed.
One of the other signs of LBD are strange periods of lethargy and unresponsiveness.
It's incurable, and generally most patients live six to twelve years past the initial manifestation.
The course of this disease is tricky. It's referred to as a "peek-a-boo" disease, which is a perfect description; it pops up from time to time in victims. These "peek-a-boo" moments are initially mild, and the victim seems to "recover" and function fairly normally afterward. Usually family/friends will notice that the victim seems "loopy" or isn't tracking well, but often this behavior is dismissed as a side effect of aging. Occasionally the "loopy" behavior will spike over a short period of time, and the victim will babble and suffer from acute paranoia, fear, and/or hallucinations. Sometimes the victim will become violent and lash out at those nearest. According to several stories I've read, doctors often confuse these spikes in behavior with mini-strokes, Parkinson's, or Alzheimer's, or they'll suspect LBD and write it in the chart--I read a couple different accounts where the doctor did not inform the family of his/her suspicions.
Link to the LBD Association
Link to the Lewy Body Journal --This is, by far, the best thing I've found. The journal follows the journey (over several years) of a woman diagnosed with LBD, and her and her family's struggle with the disease. Even more informative are the many archived letters, collected over several years, from children/spouses of other LBD sufferers.
The short version is that Grandma can't live in her home any longer, and after a few weeks in a rehab facility (due to a cracked pelvis), she is now in an assisted living apartment.
My grandma's backstory...
Let me preface this entire story with some observations: my grandmother is incredibly passive-aggressive, and (I believe) has narcissistic personality disorder (here's another link, to a website chronicling the observations of a narcissist's child). Whoever is in the room with my grandmother at that moment is her friend and a wonderful person, and she's contemptuous of those who are not present. One of her best techniques is Divide and Conquer, so people can't compare notes on what she's said about them. She's done it very successfully in the past--my sister and I have never met any of her relatives. She kept my mother and my uncle (my mom's brother) completely apart for years, telling each one that the other one never visited her or did anything for her.
Her second husband passed away about fifteen years ago, and she's been alone in a big house with lots of teeny little figurines ever since. And I mean lots. For example, one display table in the dining room showcases about seventy-five little things. And there are fourteen pieces of furniture in that room, each one showcasing as many or more little things. And there are three bedrooms, two and a half bathrooms, a family room, a living room, and a full-sized basement as well, all with their own furniture and little things. You get the picture.
She is definitely suffering from some manifestation of OCD as well. She's saved hundreds of bread bags, empty boxes, and plastic containers from take-out food, which she religiously washes out and stacks up. She purchases family-size containers of detergent, liquid starch, and ziploc bags--over and over and over again. She hoards things. She has hundreds of cans of food--mostly peas, tomatoes, pineapple chunks, that sort of thing--and most of them expired years ago. Several cans are buckled or deformed.
Three years ago
About three years ago my mother mentioned that my grandmother was very suspicious of a friend of hers. I'll call her "Vicky." Vicky had known Grandma for many years, and had been a vendor at a show my Grandma used to do. Vicky helped my Grandma out with a cockatiel my Grandma had rescued (from her own backyard, actually), and they bonded over birds. Vicky came over a lot, took my Grandma shopping, bought my Grandma presents, and sometimes brought over her own grandchildren to interact with my Grandma.
My grandmother reacted as she does with everyone. She kept Vicky and her grandchildren far away from us, and kept us far away from them she. She gave them things, probably bought them dinners when they went out, and was sweet as pie. I am just guessing, but I'm certain she told them all about how none of us would visit her, and (subtly) what a horrible family we were.
Around this time my parents moved up north (four hours away), and my grandmother was incensed at my mother about this, so I'm certain that was a major topic of conversation and complaints to Vicky.
My grandmother became angrier about Vicky, too. She had always complained about Vicky to my mother, but it got worse. She was flat-out accusing Vicky (and eventually the grandchildren) of stealing things, though, of course, this was only to my mother, in private. She would never say anything directly to Vicky, because that's how my grandmother operates.
It escalated to the point that some pieces of my grandmother's jewelry, such as her wedding ring and engagement ring, were missing. She was really upset about it, of course, and kept trying to find them. She also claimed that she had given Vicky a substantial sum of money (about a thousand dollars), which eventually changed in the telling (to three thousand dollars). Now, my grandmother has very little money, except for an investment my mother forced her to make when the second husband passed away and she received the small bit of insurance money. My grandmother has been spending money at Hallmark, QVC, HSN, Franklin Mint, etc., for years--sometimes up to two thousand a month. So this is a big chunk of money for her, money which could be used to keep her in comfort, and my mother got concerned that Vicky wasn't going to pay it back.
Grandma became pretty agitated about the entire Vicky situation, and so Mom investigated. Eventually she discovered the jewelry, which was wrapped in one of Grandma's handkerchief and stashed on her potting worktable (which has a roll-down front) in her backyard. My mom tried to figure out what had happened. My sister and I thought it was my grandma, stashing it and forgetting about it. My mother became convinced that kids had dashed into Grandma's house, grabbed the things, and then felt guilty and put it back.
In reality, it was the "peek-a-boo" of LBD, the harbinger of things to come.
My mother finally managed to speak to Vicky on the phone, after wading through disconnected numbers, and told her never to contact or visit Grandma again. Vicky sobbed on the phone but agreed.
Two years ago
Things seemed "normal," on the surface, but my sister and I (and my father, to an extent) were starting to think that something was going on. Two years ago, my grandmother gave us all checks for $25 as gifts for Christmas but didn't fill out the names. Later we realized it was because she had forgotten the name of a significant other (who had been in the family for four years at that point, and to her house multiple times) and she didn't want to admit that she couldn't remember his name. She also had two tins of cookies, and both were labeled as presents for my dad's brother. She looked confused when my sister handed them both to him, and later, after he left, my grandmother started raging about how he been given the two tins of cookies, and one of them was meant for me. She looked like she was going to turn on my sister, who had handed them to him (she usually hands out the gifts), but eventually turned on my mother instead, angrily confronting her about why she hadn't noticed and done something about it on their way to the occasion. (PS: I don't like cookies, so I was relieved, lol.)
My mother applied for, and received, power of attorney on my grandmother's behalf at some point.
When my dad brought Grandma to my sister's house for Easter last year, they conversed in the car about the usual subjects. However, three separate times she groused about how she hated that time of year, when the nights were so long, and my father had to keep correcting her and tell her that it was Spring, not Fall.
One year ago
For Thanksgiving, she unleashed a passive-aggressive masterpiece and refused to come up north, where we were celebrating at my parents' house--she said she "didn't want to be a burden," but of course she had set up two scenarios: if we begged and begged her then she would go up north, but if we took her at her word and left her home alone, she could complain to her friends and my uncle that we were horrible people who had left her alone.
We were noticing around this time that occasionally, when someone would go to her house to pick her up, she wouldn't answer the door. Since the front door is locked with a chain, my father or mother would try to get in through the garage door, but my grandmother would lock an interior door (one for which only she has the key), effectively keeping us out. They would call her repeatedly, bang on all of the doors and windows, and it would take up to an hour for my grandmother to come downstairs, disheveled and nearly unresponsive. I saw this myself on one visit, and it was eerie. My mother thought it was because my grandmother wasn't eating well. It was, of course, LBD. When I first read the symptoms of LBD, I thought that she didn't have the periods of lethargy--but then I remembered these odd moments and it all clicked into place.
My mom started to pay the neighbor across the street to help her out. That didn't last long, as we all expected. At first, Grandma was sweet as pie, but then she began complaining to my mother.
Grandma likes to appear like she's the Lady of the Manor and promised to take the neighbor family all out for dinner, all of the children and both parents, to celebrate two of the children's birthdays (their birthdays are close together). They went out to an Italian restaurant, and the bill (reasonably) came to $110. Later, my grandmother called my mother and raged into the phone about how they "soaked" her for dinner and how it was so expensive.
A week later she demanded that my mother fire her.
My mother then hired the sweet, kind-hearted neighbor next door to watch over her.
My mother also started getting the addresses for my grandma's bills changed to her own address up north so that she could pay them, and took over my grandmother's checking account when it became obvious that she was writing checks out to fraudulent charities, or not writing checks out for bills that needed to be paid.
At this point we think that she stopped taking most of the medication that had been prescribed to her (memory meds, thyroid meds, etc.). Also, we think she was eating mostly ice cream and candy. The neighbor lady was cooking for her, but Grandma kept telling Mom that "her cooking stinks" and that she was trying to "poison" her (she didn't mean this literally, it's her idea of a nasty joke). My mother was over and sampled some of the spaghetti, and told us later that there was nothing wrong with it. Grandma's tastebuds aren't working well, I assume.
Grandma began to get angrier, saying that no one was visiting her at all (we were, but she was forgetting it by the next day) and she took down all of our pictures and gave us nothing for Christmas. That was a rather difficult holiday--it took place at my apartment, and she became embarrassed because we were all giving her gifts, and then she started saying over and over again (loudly) that she was taking us all out to dinner as her present. She made us promise that we would all go out to dinner with her. She became slightly contentious, as if we weren't going to fulfill our part of the bargain, and she kept repeating herself. She also started harrassing my poor uncle, wanting to know why he hasn't come over--this is my dad's brother, he's not even really related to her, and hasn't been to her house in at least twenty years, and has no reason to visit her.
Vicky was becoming a constant presence after Christmas, at least in my grandmother's head. "Vicky" was stealing things. Vicky was calling her. Vicky was in the backyard. Vicky was in the driveway. Vicky was at her kitchen table.
My grandmother had a cluttered house, always, but it was livable. There were places for everything. It is very hard to move in her house, but not due to piled up newspapers or anything like that--it's due to tiny little tables and display cases and dry sinks and...you get the picture. But now she was moving things all over the place, and my mother despaired on a constant basis; eyeglasses would be put in a drawer in an unused room, keys would be in a flowerpot, bills would be under dishes. My mother was finding bills and important tax documents all over the house, stained and chewed on by the birds. My grandmother would claim she hadn't received any mail in days.
While I was on my trip in April/May, my sister called me to tell me that they'd gone out to eat with Grandma, and she'd had a bizarre and alarming choking fit. Now, my sister, my mom and I all choke very easily, and sometimes on "nothing," but this was really a very strange fit.
Vicky was now stealing everything that wasn't nailed down, and moving things, to boot.
My sister and I took her out for her birthday in June. She held circular conversations with us. Three times she repeated the same three bits of information about how the basement stairs had been carpeted by teh ebil people and that she hated it. Of course, she'd signed the estimate and seemed to love the carpeting on the first day. Smile and nod.
In July she called the police, claiming that she had been robbed. Fortunately, they didn't file a report, but they did find items of jewelry in the house that she claimed had been taken. What had happened is that she'd lost her purse and she'd ripped apart the house, trying to find it. The next morning she woke up and the house was a complete mess, and she never understood that she had done it herself.
My mother stayed with her for a week after, and witnessed lots of strange behaviors. Grandma would wander about at night. My mom would get up to use the bathroom, and Grandma would come in and say, "What are you doing here?" Grandma also kept claiming over and over again that things were being stolen, and Mom kept finding things in really bizarre locations. Finally, after many arguments, my grandmother stopped saying that Vicky was stealing things--but now she claimed that everything was being moved. In the middle of the night she woke my mother up to triumphantly show her how all of the roosters had been moved.
My mother went downstairs with her and told her nothing had been moved. My grandmother protested loudly. My mother finally picked up a glass case on a coffee table. "Do you see the ring of dust on the table?" she demanded. "This has not been moved. Not tonight. Not in months!"
During this same visit she told my mother that she wanted my mother to stay "tied to [her] apron strings forever."
My sister and I were the voice of Doom here. Something very bad was going on, but we didn't know what it was. We kept advocating that Grandma be moved or find a new doctor. Something had to change.
The house was getting dustier and dustier. Sometimes my parents or my uncle and aunt would come over and clean, but it made no difference--my grandmother had three cockatiels at this point, and they spread dander and feathers everywhere. (Not to mention that they poop on everything.)
She lost her purse at some point in August. My mother was with her until 9pm on a Friday, and on Saturday morning, when my uncle came over, the purse was gone. Absolutely gone. To this day we haven't found it. We know she didn't leave her house, so it has to be in there somewhere--she's hidden it well. So my uncle took her to the DMV to get a new ID card, and he put the temporary ID and a wallet and other things into a fanny pack. It was gone by the next day.
Finally, about a month ago, my grandmother called my mom, hysterical, saying that she'd been knocked out with "a needle" and robbed. (It was a mosquito bite.)
The next day, my parents were on their way over because they were taking her to a new doctor, one who specializes in geriatric patients. The neighbor lady called and told them that there were police cars, a fire truck, and an EMS vehicle in the driveway.
My grandmother had fallen out of bed, and was convinced that she had been beaten and robbed.
My mother was still thinking that it was because her eating habits were so poor. Grandma was claiming that her stomach hurt. They took her to lunch, where she ate very little, and then they took her to the new doctor. I'll call her Dr. New.
My grandmother loved her old doctor--I'll call her Dr. Old. Dr. Old went along with what my grandmother said. She asked my grandmother questions and then my grandmother would lie to her--"I'm not depressed," "I'm taking all of my medications," etc. Dr. Old would try to administer memory tests, and at first Grandma refused. Then she acquiesced, but when she did poorly, Grandma wrote it off, saying, "Oh, old people forget things," which Dr. Old would agree to, and that was it.
Well, Dr. New was having none of it. She administered the memory test. Grandma thought Clinton was president, could not remember the date, the day of the week, the township they were in. When Dr. New asked her to start counting backward from 100 in intervals of 7, my grandmother turned nasty--she realized that her pretend-angel act wasn't working. She said that it was a stupid test and she wasn't doing it. My mother brought all of Grandma's prescription drugs with her, and it turned out that even drugs that had been refilled as long ago as January were untouched.
Dr. New diagnosed her with LBD. I will be forever grateful to her for this.
Afterward, Grandma still complained about pain. My mom kept asking her if she wanted to go to the hospital, but Grandma staunchly refused.
The next morning, it was so bad they took her to emergency. She'd cracked her pelvis, presumably when she'd fallen out of bed.
Transferred to rehab
Once the hospital stay was finished, she was sent to a rehab facility. She was there for three weeks. She hated it entirely. She went straight from the hospital to rehab, and my mother packed a few things for her, just clothes and toiletries, and a coin purse with five single dollar bills inside. The next day, the staff informed my mother that Grandma had filed a report because she claimed her purse--and the $400 inside it--had been stolen. She complained about the "theft" when we went to visit her. She said that she had $400, and a lot of loose change, and she'd taken it and put it into a hanky, and tied up the hanky, and then put it inside something, and then put it in the pocket of her jacket. She went to visit someone, and the jacket was missing when she left. My mom kept explaining that her purse was at home, and that Mom had only packed five dollars for her. Mom had not packed a jacket.
Grandma also said that she was "helping" the staff with paperwork. That she'd gone to the nurse's station, and complained that she was bored, and she said they'd given her paperwork to do. She couldn't explain exactly what was involved. She's half-blind, of course, and can only read with glasses, and I can't imagine that she helped them with anything--unless they have some sort of special "paperwork" for people like her.
Bless those who took the time to talk to her while she was there. A volunteer came in and gave her a choice of a Beany Baby, and my grandmother chose a skunk. Later she told me that she'd bought it from the store at the rehab place--there is no store there, of course.
There weren't a lot of options. Grandma couldn't easily go back to her home. It only has a half-bathroom on the main floor, and even if we transformed the dining room or the living room into a makeshift bedroom, there is one room that you need to take two steps down to get into, and there are no railings. Everything would have to be modified and expensive equipment would have to be procured. She'd also need aides to administer medication, as she's clearly incapable of taking it herself. Her food intake needs to be monitored. She'd need to be bathed somehow.
I visited her three times, and she asked me over and over again when she was getting out. She also started crying because the farm (where she lived until she was seventeen) was gone, and she said she was sad to think about it. It was clear to her that the farm had been gone a long time, and she missed it deeply. She seemed fairly in tune with things at times, but her short-term memory was not very good. Well, even her long-term memories were a little strange. She thought that she'd lived in her house for fifty years (thirty-two, in reality), that she'd had her pet bird Clemmie for over thirty years and that she'd had it when I was a little girl (the bird is only thirteen), that her second husband had been dead for thirty years (fifteen). She asked about her house. At one point she said that she couldn't go back home, and when I asked why, she said because she couldn't deal with stairs--I nearly fell over because I couldn't believe that she remembered that fact.
She became more and more miserable at the rehab facility. A move to a different, not-as-dark room made her temporarily happy, but that died down quickly. She complained to us incessantly about the food, the view, and anything else she could think of. She routinely found ways to call my mother and anyone else and complain. Astonishingly enough, someone from the rehab facility actually called my aunt and was extremely nasty to her on the phone, saying that Grandma was a nuisance.
My mother and I took two of the birds (the females) to the vets and had their wings trimmed and blood work done to certify them as disease-free for the assisted living place. The third (a male) was given to the pet store from where she'd purchased it. He's a bit more aggressive. The birds lived in the kitchen, and the females would stay mostly in the kitchen, but he would fly off into other rooms by himself. He was also chirpier and louder than the other two, so I advised them to get rid of him. I also strongly advocated that my mother procure guardianship of my grandmother.
My parents came down a few days ago. My mother made arrangements for the assisted living apartment, and they've had furniture and belonging transferred there, and are now starting the epic task of sorting through the thousands of pieces of bric-a-brac that my grandmother owns.
Vicky called my grandmother's home, and when my mother answered, she said my Grandma's name, clearly proving that she has been calling her. Vicky claims that she heard about Grandma through a mutual friend. She said that she wants back all of the presents that she gave my grandmother, and she also says that Grandma promised her many possessions because she wanted them to go to "someone who would appreciate them" and proceeded to name them all and describe their locations in the house. My mother countered by telling her that she'd found the canceled check for FIVE thousand dollars that Grandma had given Vicky. I'm still waiting to see how that plays out.
My mother finally realized that she MUST seek guardianship, or someone like Vicky (and there are others, believe me) will promise my grandmother that she can go back to her house and live if she grants her guardianship. And then Vicky will really clean out the place. We do suspect her of having stolen items, and perhaps cash, from the house, though we have no idea if she did or not.
Now--the assisted living apartment
We've transferred her into the assisted living apartment (two days ago). It's a cute apartment, full of light, has high ceilings, cable, etc. Also, the staff was dead-set against her bringing her two cockatiels, but we'd been told by the salespeople that it would be okay, and while the staff finally conceded, but they were really unhappy about it. I don't blame them.
She seemed content on the evening of the first day, but she was also a bit weepy. She was so happy to see her birds again, but she kept asking over and over and over again where the male bird was, and we kept explaining to her that he bit the other birds and we had to take him back. Then she got bent out of shape because my mother told her we didn't get any money for him (the truth is, we were lucky they took him at all). Every time we explained that he was too aggressive, she would suddenly agree with us and tell us that he bit the other birds and bit humans, too. Of course, if we had said what a good bird he was, she would have parroted that, too, and told us how he never hurt a fly. That's how she is.
I'm worried about the cockatiels. From what I've read of this disease, she's going to cycle between plateau and spike, randomly, and I just pray that she doesn't get violent and harm the birds (I've already read that one victim of this disease attacked a beloved dog, who slept with her every night, with a two-by-four).
She also told us that she had looked at this facility when she was young, and decided that she wanted to retire there ages ago, and that she and her second husband planned for their retirement. Which is all just wishful thinking; if Mom hadn't put aside that little bit of money for her, she'd be nearly destitute now. If Mom hadn't found this nice apartment complex (which Grandma pooh-poohed, of course), she'd have nowhere to stay right now. Grandma has nothing but SS and a small pension from her second husband. She's spent nearly all of her limited savings on bric-a-brac. And the facility was built this year, lol. She told us this detailed story of how she'd looked at it years ago, and the staff asked her and her second husband to join them for a meal, and what wonderful cooking it was! How delicious everything was!
We asked her how dinner was, and she said that it was great, that they had so much food she couldn't believe it, and it was so good.
She kept talking about how contented the birds were, and that she was contented because they were contented. She was so happy to see them. She loved how light the room was, how high the ceilings were, and how it was such a nice place. She also kept asking my mom what had been done with the farm. My mom explained that Grandma's sister had sold it in 1968. Grandma wanted to know what had happened to the money. Eventually my mom reminded her about a refrigerator that had been purchased with the money, and Grandma seemed to recall that, supplying another detail out of her own memories. Then Grandma wanted to know what had happened to her house. My mom said they were cleaning it.
That was Tuesday. Last night (Wednesday) she called my uncle and aunt's house (they didn't pick up, they're out of town) and left a long message about how she didn't want to be there and her bird had been taken from her.
Then she wrote a letter to my uncle and gave it to one of the staff to mail. They gave it to my mother this morning. It went on and on about how my grandmother felt that she was there "against her wishes" and how she wanted to move back to her home, but she's afraid that it's been sold. She wants to know what happened to her money and her "assets." Yes, she thinks that she's sitting on a pile of gold there in her home, that everything is worth so much, but in reality--most of it is barely worth ten cents on the dollar. She does have some figurines which might be worth a little more, but it isn't much, and assisted living is expensive. On a side note--I just want to mention how sick I am of her thinking that all of her "treasures" are worth so much, and how dear they are to her. She couldn't care less about her family (unless she needs something), but she'll go on and on about some ugly plate. I hate this whole "collectible" mindset, honestly. If you like it, certainly buy it and enjoy it. But to buy it and then preen about how much it's supposedly worth--ugh. It also ties into the industry, and how they slyly inflate their value, how they imply that their items are investments--the jewelry industry is the same way. They'll have you think that diamond engagement ring is worth a lot--but wait 'til you try to sell it. Then you'll learn about their ten-times markup, and that the resale value is next-to-nothing. It's too bad that she bought so much bric-a-brac--it won't keep her warm in the future, that's for certain. It won't pay for the skilled nursing care that she's going to need eventually.
The letter also went on to detail how her bird had been unjustly taken from her and given to a pet store. Of course. She also told my uncle that he'd always been her favorite, and not to let my mother do this to her. Grandma didn't write it herself--I think the activities coordinator wrote it for her--but she made them include the address of the apartment building so that he'd know where to pick her up. Grandma also claims that my mom is unreachable by phone, that she's up north (she's not, of course--they're visiting her as often as possible).
I'm hoping to find out how my grandmother had the woman address the card. Could she remember my uncle's address? Did she think the staff would magically know where the card should go? I hope to find out.
Today (Thursday) my grandmother doesn't even recall the phone call. And she wouldn't eat breakfast--she said the food was horrible, and she hates it there. The staff is very leery about this--they're not happy about the bird situation, and they've already said to my mother that Grandma is not adjusting well.
I'll be adding to this, I think. First ETA: Fixed spelling errors, fleshed it out, added new information about the letter.
No comments necessary--it helps just to write it out, honestly.
About the disease
LBD is the second most common form of dementia, according to some, but it seems to be a rather murky disease; I've read several stories of misdiagnoses (it mimics the symptoms of mini-strokes and both Parkinson's and Alzheimer's), and I've also read that some doctors, nurses, and nursing home staff aren't familiar with it. It causes intense hallucinations, difficulty in walking/maintaining balance, and wreaks havoc with memory. Eventually the victim is reduced to a vegetable, unable to move or interact with his/her environment. There seems to be some sort of connection between restless sleep (REM sleep behavior disorder) and LBD/A's/P's. Two-thirds of people who act out their dreams and are diagnosed with REM sleep behavior disorder develop one of these diseases. There are anecdotes of people jumping out of bed and tackling dressers, knocking over lamps, and thrashing about regularly in bed.
One of the other signs of LBD are strange periods of lethargy and unresponsiveness.
It's incurable, and generally most patients live six to twelve years past the initial manifestation.
The course of this disease is tricky. It's referred to as a "peek-a-boo" disease, which is a perfect description; it pops up from time to time in victims. These "peek-a-boo" moments are initially mild, and the victim seems to "recover" and function fairly normally afterward. Usually family/friends will notice that the victim seems "loopy" or isn't tracking well, but often this behavior is dismissed as a side effect of aging. Occasionally the "loopy" behavior will spike over a short period of time, and the victim will babble and suffer from acute paranoia, fear, and/or hallucinations. Sometimes the victim will become violent and lash out at those nearest. According to several stories I've read, doctors often confuse these spikes in behavior with mini-strokes, Parkinson's, or Alzheimer's, or they'll suspect LBD and write it in the chart--I read a couple different accounts where the doctor did not inform the family of his/her suspicions.
Link to the LBD Association
Link to the Lewy Body Journal --This is, by far, the best thing I've found. The journal follows the journey (over several years) of a woman diagnosed with LBD, and her and her family's struggle with the disease. Even more informative are the many archived letters, collected over several years, from children/spouses of other LBD sufferers.
The short version is that Grandma can't live in her home any longer, and after a few weeks in a rehab facility (due to a cracked pelvis), she is now in an assisted living apartment.
My grandma's backstory...
Let me preface this entire story with some observations: my grandmother is incredibly passive-aggressive, and (I believe) has narcissistic personality disorder (here's another link, to a website chronicling the observations of a narcissist's child). Whoever is in the room with my grandmother at that moment is her friend and a wonderful person, and she's contemptuous of those who are not present. One of her best techniques is Divide and Conquer, so people can't compare notes on what she's said about them. She's done it very successfully in the past--my sister and I have never met any of her relatives. She kept my mother and my uncle (my mom's brother) completely apart for years, telling each one that the other one never visited her or did anything for her.
Her second husband passed away about fifteen years ago, and she's been alone in a big house with lots of teeny little figurines ever since. And I mean lots. For example, one display table in the dining room showcases about seventy-five little things. And there are fourteen pieces of furniture in that room, each one showcasing as many or more little things. And there are three bedrooms, two and a half bathrooms, a family room, a living room, and a full-sized basement as well, all with their own furniture and little things. You get the picture.
She is definitely suffering from some manifestation of OCD as well. She's saved hundreds of bread bags, empty boxes, and plastic containers from take-out food, which she religiously washes out and stacks up. She purchases family-size containers of detergent, liquid starch, and ziploc bags--over and over and over again. She hoards things. She has hundreds of cans of food--mostly peas, tomatoes, pineapple chunks, that sort of thing--and most of them expired years ago. Several cans are buckled or deformed.
Three years ago
About three years ago my mother mentioned that my grandmother was very suspicious of a friend of hers. I'll call her "Vicky." Vicky had known Grandma for many years, and had been a vendor at a show my Grandma used to do. Vicky helped my Grandma out with a cockatiel my Grandma had rescued (from her own backyard, actually), and they bonded over birds. Vicky came over a lot, took my Grandma shopping, bought my Grandma presents, and sometimes brought over her own grandchildren to interact with my Grandma.
My grandmother reacted as she does with everyone. She kept Vicky and her grandchildren far away from us, and kept us far away from them she. She gave them things, probably bought them dinners when they went out, and was sweet as pie. I am just guessing, but I'm certain she told them all about how none of us would visit her, and (subtly) what a horrible family we were.
Around this time my parents moved up north (four hours away), and my grandmother was incensed at my mother about this, so I'm certain that was a major topic of conversation and complaints to Vicky.
My grandmother became angrier about Vicky, too. She had always complained about Vicky to my mother, but it got worse. She was flat-out accusing Vicky (and eventually the grandchildren) of stealing things, though, of course, this was only to my mother, in private. She would never say anything directly to Vicky, because that's how my grandmother operates.
It escalated to the point that some pieces of my grandmother's jewelry, such as her wedding ring and engagement ring, were missing. She was really upset about it, of course, and kept trying to find them. She also claimed that she had given Vicky a substantial sum of money (about a thousand dollars), which eventually changed in the telling (to three thousand dollars). Now, my grandmother has very little money, except for an investment my mother forced her to make when the second husband passed away and she received the small bit of insurance money. My grandmother has been spending money at Hallmark, QVC, HSN, Franklin Mint, etc., for years--sometimes up to two thousand a month. So this is a big chunk of money for her, money which could be used to keep her in comfort, and my mother got concerned that Vicky wasn't going to pay it back.
Grandma became pretty agitated about the entire Vicky situation, and so Mom investigated. Eventually she discovered the jewelry, which was wrapped in one of Grandma's handkerchief and stashed on her potting worktable (which has a roll-down front) in her backyard. My mom tried to figure out what had happened. My sister and I thought it was my grandma, stashing it and forgetting about it. My mother became convinced that kids had dashed into Grandma's house, grabbed the things, and then felt guilty and put it back.
In reality, it was the "peek-a-boo" of LBD, the harbinger of things to come.
My mother finally managed to speak to Vicky on the phone, after wading through disconnected numbers, and told her never to contact or visit Grandma again. Vicky sobbed on the phone but agreed.
Two years ago
Things seemed "normal," on the surface, but my sister and I (and my father, to an extent) were starting to think that something was going on. Two years ago, my grandmother gave us all checks for $25 as gifts for Christmas but didn't fill out the names. Later we realized it was because she had forgotten the name of a significant other (who had been in the family for four years at that point, and to her house multiple times) and she didn't want to admit that she couldn't remember his name. She also had two tins of cookies, and both were labeled as presents for my dad's brother. She looked confused when my sister handed them both to him, and later, after he left, my grandmother started raging about how he been given the two tins of cookies, and one of them was meant for me. She looked like she was going to turn on my sister, who had handed them to him (she usually hands out the gifts), but eventually turned on my mother instead, angrily confronting her about why she hadn't noticed and done something about it on their way to the occasion. (PS: I don't like cookies, so I was relieved, lol.)
My mother applied for, and received, power of attorney on my grandmother's behalf at some point.
When my dad brought Grandma to my sister's house for Easter last year, they conversed in the car about the usual subjects. However, three separate times she groused about how she hated that time of year, when the nights were so long, and my father had to keep correcting her and tell her that it was Spring, not Fall.
One year ago
For Thanksgiving, she unleashed a passive-aggressive masterpiece and refused to come up north, where we were celebrating at my parents' house--she said she "didn't want to be a burden," but of course she had set up two scenarios: if we begged and begged her then she would go up north, but if we took her at her word and left her home alone, she could complain to her friends and my uncle that we were horrible people who had left her alone.
We were noticing around this time that occasionally, when someone would go to her house to pick her up, she wouldn't answer the door. Since the front door is locked with a chain, my father or mother would try to get in through the garage door, but my grandmother would lock an interior door (one for which only she has the key), effectively keeping us out. They would call her repeatedly, bang on all of the doors and windows, and it would take up to an hour for my grandmother to come downstairs, disheveled and nearly unresponsive. I saw this myself on one visit, and it was eerie. My mother thought it was because my grandmother wasn't eating well. It was, of course, LBD. When I first read the symptoms of LBD, I thought that she didn't have the periods of lethargy--but then I remembered these odd moments and it all clicked into place.
My mom started to pay the neighbor across the street to help her out. That didn't last long, as we all expected. At first, Grandma was sweet as pie, but then she began complaining to my mother.
Grandma likes to appear like she's the Lady of the Manor and promised to take the neighbor family all out for dinner, all of the children and both parents, to celebrate two of the children's birthdays (their birthdays are close together). They went out to an Italian restaurant, and the bill (reasonably) came to $110. Later, my grandmother called my mother and raged into the phone about how they "soaked" her for dinner and how it was so expensive.
A week later she demanded that my mother fire her.
My mother then hired the sweet, kind-hearted neighbor next door to watch over her.
My mother also started getting the addresses for my grandma's bills changed to her own address up north so that she could pay them, and took over my grandmother's checking account when it became obvious that she was writing checks out to fraudulent charities, or not writing checks out for bills that needed to be paid.
At this point we think that she stopped taking most of the medication that had been prescribed to her (memory meds, thyroid meds, etc.). Also, we think she was eating mostly ice cream and candy. The neighbor lady was cooking for her, but Grandma kept telling Mom that "her cooking stinks" and that she was trying to "poison" her (she didn't mean this literally, it's her idea of a nasty joke). My mother was over and sampled some of the spaghetti, and told us later that there was nothing wrong with it. Grandma's tastebuds aren't working well, I assume.
Grandma began to get angrier, saying that no one was visiting her at all (we were, but she was forgetting it by the next day) and she took down all of our pictures and gave us nothing for Christmas. That was a rather difficult holiday--it took place at my apartment, and she became embarrassed because we were all giving her gifts, and then she started saying over and over again (loudly) that she was taking us all out to dinner as her present. She made us promise that we would all go out to dinner with her. She became slightly contentious, as if we weren't going to fulfill our part of the bargain, and she kept repeating herself. She also started harrassing my poor uncle, wanting to know why he hasn't come over--this is my dad's brother, he's not even really related to her, and hasn't been to her house in at least twenty years, and has no reason to visit her.
Vicky was becoming a constant presence after Christmas, at least in my grandmother's head. "Vicky" was stealing things. Vicky was calling her. Vicky was in the backyard. Vicky was in the driveway. Vicky was at her kitchen table.
My grandmother had a cluttered house, always, but it was livable. There were places for everything. It is very hard to move in her house, but not due to piled up newspapers or anything like that--it's due to tiny little tables and display cases and dry sinks and...you get the picture. But now she was moving things all over the place, and my mother despaired on a constant basis; eyeglasses would be put in a drawer in an unused room, keys would be in a flowerpot, bills would be under dishes. My mother was finding bills and important tax documents all over the house, stained and chewed on by the birds. My grandmother would claim she hadn't received any mail in days.
While I was on my trip in April/May, my sister called me to tell me that they'd gone out to eat with Grandma, and she'd had a bizarre and alarming choking fit. Now, my sister, my mom and I all choke very easily, and sometimes on "nothing," but this was really a very strange fit.
Vicky was now stealing everything that wasn't nailed down, and moving things, to boot.
My sister and I took her out for her birthday in June. She held circular conversations with us. Three times she repeated the same three bits of information about how the basement stairs had been carpeted by teh ebil people and that she hated it. Of course, she'd signed the estimate and seemed to love the carpeting on the first day. Smile and nod.
In July she called the police, claiming that she had been robbed. Fortunately, they didn't file a report, but they did find items of jewelry in the house that she claimed had been taken. What had happened is that she'd lost her purse and she'd ripped apart the house, trying to find it. The next morning she woke up and the house was a complete mess, and she never understood that she had done it herself.
My mother stayed with her for a week after, and witnessed lots of strange behaviors. Grandma would wander about at night. My mom would get up to use the bathroom, and Grandma would come in and say, "What are you doing here?" Grandma also kept claiming over and over again that things were being stolen, and Mom kept finding things in really bizarre locations. Finally, after many arguments, my grandmother stopped saying that Vicky was stealing things--but now she claimed that everything was being moved. In the middle of the night she woke my mother up to triumphantly show her how all of the roosters had been moved.
My mother went downstairs with her and told her nothing had been moved. My grandmother protested loudly. My mother finally picked up a glass case on a coffee table. "Do you see the ring of dust on the table?" she demanded. "This has not been moved. Not tonight. Not in months!"
During this same visit she told my mother that she wanted my mother to stay "tied to [her] apron strings forever."
My sister and I were the voice of Doom here. Something very bad was going on, but we didn't know what it was. We kept advocating that Grandma be moved or find a new doctor. Something had to change.
The house was getting dustier and dustier. Sometimes my parents or my uncle and aunt would come over and clean, but it made no difference--my grandmother had three cockatiels at this point, and they spread dander and feathers everywhere. (Not to mention that they poop on everything.)
She lost her purse at some point in August. My mother was with her until 9pm on a Friday, and on Saturday morning, when my uncle came over, the purse was gone. Absolutely gone. To this day we haven't found it. We know she didn't leave her house, so it has to be in there somewhere--she's hidden it well. So my uncle took her to the DMV to get a new ID card, and he put the temporary ID and a wallet and other things into a fanny pack. It was gone by the next day.
Finally, about a month ago, my grandmother called my mom, hysterical, saying that she'd been knocked out with "a needle" and robbed. (It was a mosquito bite.)
The next day, my parents were on their way over because they were taking her to a new doctor, one who specializes in geriatric patients. The neighbor lady called and told them that there were police cars, a fire truck, and an EMS vehicle in the driveway.
My grandmother had fallen out of bed, and was convinced that she had been beaten and robbed.
My mother was still thinking that it was because her eating habits were so poor. Grandma was claiming that her stomach hurt. They took her to lunch, where she ate very little, and then they took her to the new doctor. I'll call her Dr. New.
My grandmother loved her old doctor--I'll call her Dr. Old. Dr. Old went along with what my grandmother said. She asked my grandmother questions and then my grandmother would lie to her--"I'm not depressed," "I'm taking all of my medications," etc. Dr. Old would try to administer memory tests, and at first Grandma refused. Then she acquiesced, but when she did poorly, Grandma wrote it off, saying, "Oh, old people forget things," which Dr. Old would agree to, and that was it.
Well, Dr. New was having none of it. She administered the memory test. Grandma thought Clinton was president, could not remember the date, the day of the week, the township they were in. When Dr. New asked her to start counting backward from 100 in intervals of 7, my grandmother turned nasty--she realized that her pretend-angel act wasn't working. She said that it was a stupid test and she wasn't doing it. My mother brought all of Grandma's prescription drugs with her, and it turned out that even drugs that had been refilled as long ago as January were untouched.
Dr. New diagnosed her with LBD. I will be forever grateful to her for this.
Afterward, Grandma still complained about pain. My mom kept asking her if she wanted to go to the hospital, but Grandma staunchly refused.
The next morning, it was so bad they took her to emergency. She'd cracked her pelvis, presumably when she'd fallen out of bed.
Transferred to rehab
Once the hospital stay was finished, she was sent to a rehab facility. She was there for three weeks. She hated it entirely. She went straight from the hospital to rehab, and my mother packed a few things for her, just clothes and toiletries, and a coin purse with five single dollar bills inside. The next day, the staff informed my mother that Grandma had filed a report because she claimed her purse--and the $400 inside it--had been stolen. She complained about the "theft" when we went to visit her. She said that she had $400, and a lot of loose change, and she'd taken it and put it into a hanky, and tied up the hanky, and then put it inside something, and then put it in the pocket of her jacket. She went to visit someone, and the jacket was missing when she left. My mom kept explaining that her purse was at home, and that Mom had only packed five dollars for her. Mom had not packed a jacket.
Grandma also said that she was "helping" the staff with paperwork. That she'd gone to the nurse's station, and complained that she was bored, and she said they'd given her paperwork to do. She couldn't explain exactly what was involved. She's half-blind, of course, and can only read with glasses, and I can't imagine that she helped them with anything--unless they have some sort of special "paperwork" for people like her.
Bless those who took the time to talk to her while she was there. A volunteer came in and gave her a choice of a Beany Baby, and my grandmother chose a skunk. Later she told me that she'd bought it from the store at the rehab place--there is no store there, of course.
There weren't a lot of options. Grandma couldn't easily go back to her home. It only has a half-bathroom on the main floor, and even if we transformed the dining room or the living room into a makeshift bedroom, there is one room that you need to take two steps down to get into, and there are no railings. Everything would have to be modified and expensive equipment would have to be procured. She'd also need aides to administer medication, as she's clearly incapable of taking it herself. Her food intake needs to be monitored. She'd need to be bathed somehow.
I visited her three times, and she asked me over and over again when she was getting out. She also started crying because the farm (where she lived until she was seventeen) was gone, and she said she was sad to think about it. It was clear to her that the farm had been gone a long time, and she missed it deeply. She seemed fairly in tune with things at times, but her short-term memory was not very good. Well, even her long-term memories were a little strange. She thought that she'd lived in her house for fifty years (thirty-two, in reality), that she'd had her pet bird Clemmie for over thirty years and that she'd had it when I was a little girl (the bird is only thirteen), that her second husband had been dead for thirty years (fifteen). She asked about her house. At one point she said that she couldn't go back home, and when I asked why, she said because she couldn't deal with stairs--I nearly fell over because I couldn't believe that she remembered that fact.
She became more and more miserable at the rehab facility. A move to a different, not-as-dark room made her temporarily happy, but that died down quickly. She complained to us incessantly about the food, the view, and anything else she could think of. She routinely found ways to call my mother and anyone else and complain. Astonishingly enough, someone from the rehab facility actually called my aunt and was extremely nasty to her on the phone, saying that Grandma was a nuisance.
My mother and I took two of the birds (the females) to the vets and had their wings trimmed and blood work done to certify them as disease-free for the assisted living place. The third (a male) was given to the pet store from where she'd purchased it. He's a bit more aggressive. The birds lived in the kitchen, and the females would stay mostly in the kitchen, but he would fly off into other rooms by himself. He was also chirpier and louder than the other two, so I advised them to get rid of him. I also strongly advocated that my mother procure guardianship of my grandmother.
My parents came down a few days ago. My mother made arrangements for the assisted living apartment, and they've had furniture and belonging transferred there, and are now starting the epic task of sorting through the thousands of pieces of bric-a-brac that my grandmother owns.
Vicky called my grandmother's home, and when my mother answered, she said my Grandma's name, clearly proving that she has been calling her. Vicky claims that she heard about Grandma through a mutual friend. She said that she wants back all of the presents that she gave my grandmother, and she also says that Grandma promised her many possessions because she wanted them to go to "someone who would appreciate them" and proceeded to name them all and describe their locations in the house. My mother countered by telling her that she'd found the canceled check for FIVE thousand dollars that Grandma had given Vicky. I'm still waiting to see how that plays out.
My mother finally realized that she MUST seek guardianship, or someone like Vicky (and there are others, believe me) will promise my grandmother that she can go back to her house and live if she grants her guardianship. And then Vicky will really clean out the place. We do suspect her of having stolen items, and perhaps cash, from the house, though we have no idea if she did or not.
Now--the assisted living apartment
We've transferred her into the assisted living apartment (two days ago). It's a cute apartment, full of light, has high ceilings, cable, etc. Also, the staff was dead-set against her bringing her two cockatiels, but we'd been told by the salespeople that it would be okay, and while the staff finally conceded, but they were really unhappy about it. I don't blame them.
She seemed content on the evening of the first day, but she was also a bit weepy. She was so happy to see her birds again, but she kept asking over and over and over again where the male bird was, and we kept explaining to her that he bit the other birds and we had to take him back. Then she got bent out of shape because my mother told her we didn't get any money for him (the truth is, we were lucky they took him at all). Every time we explained that he was too aggressive, she would suddenly agree with us and tell us that he bit the other birds and bit humans, too. Of course, if we had said what a good bird he was, she would have parroted that, too, and told us how he never hurt a fly. That's how she is.
I'm worried about the cockatiels. From what I've read of this disease, she's going to cycle between plateau and spike, randomly, and I just pray that she doesn't get violent and harm the birds (I've already read that one victim of this disease attacked a beloved dog, who slept with her every night, with a two-by-four).
She also told us that she had looked at this facility when she was young, and decided that she wanted to retire there ages ago, and that she and her second husband planned for their retirement. Which is all just wishful thinking; if Mom hadn't put aside that little bit of money for her, she'd be nearly destitute now. If Mom hadn't found this nice apartment complex (which Grandma pooh-poohed, of course), she'd have nowhere to stay right now. Grandma has nothing but SS and a small pension from her second husband. She's spent nearly all of her limited savings on bric-a-brac. And the facility was built this year, lol. She told us this detailed story of how she'd looked at it years ago, and the staff asked her and her second husband to join them for a meal, and what wonderful cooking it was! How delicious everything was!
We asked her how dinner was, and she said that it was great, that they had so much food she couldn't believe it, and it was so good.
She kept talking about how contented the birds were, and that she was contented because they were contented. She was so happy to see them. She loved how light the room was, how high the ceilings were, and how it was such a nice place. She also kept asking my mom what had been done with the farm. My mom explained that Grandma's sister had sold it in 1968. Grandma wanted to know what had happened to the money. Eventually my mom reminded her about a refrigerator that had been purchased with the money, and Grandma seemed to recall that, supplying another detail out of her own memories. Then Grandma wanted to know what had happened to her house. My mom said they were cleaning it.
That was Tuesday. Last night (Wednesday) she called my uncle and aunt's house (they didn't pick up, they're out of town) and left a long message about how she didn't want to be there and her bird had been taken from her.
Then she wrote a letter to my uncle and gave it to one of the staff to mail. They gave it to my mother this morning. It went on and on about how my grandmother felt that she was there "against her wishes" and how she wanted to move back to her home, but she's afraid that it's been sold. She wants to know what happened to her money and her "assets." Yes, she thinks that she's sitting on a pile of gold there in her home, that everything is worth so much, but in reality--most of it is barely worth ten cents on the dollar. She does have some figurines which might be worth a little more, but it isn't much, and assisted living is expensive. On a side note--I just want to mention how sick I am of her thinking that all of her "treasures" are worth so much, and how dear they are to her. She couldn't care less about her family (unless she needs something), but she'll go on and on about some ugly plate. I hate this whole "collectible" mindset, honestly. If you like it, certainly buy it and enjoy it. But to buy it and then preen about how much it's supposedly worth--ugh. It also ties into the industry, and how they slyly inflate their value, how they imply that their items are investments--the jewelry industry is the same way. They'll have you think that diamond engagement ring is worth a lot--but wait 'til you try to sell it. Then you'll learn about their ten-times markup, and that the resale value is next-to-nothing. It's too bad that she bought so much bric-a-brac--it won't keep her warm in the future, that's for certain. It won't pay for the skilled nursing care that she's going to need eventually.
The letter also went on to detail how her bird had been unjustly taken from her and given to a pet store. Of course. She also told my uncle that he'd always been her favorite, and not to let my mother do this to her. Grandma didn't write it herself--I think the activities coordinator wrote it for her--but she made them include the address of the apartment building so that he'd know where to pick her up. Grandma also claims that my mom is unreachable by phone, that she's up north (she's not, of course--they're visiting her as often as possible).
I'm hoping to find out how my grandmother had the woman address the card. Could she remember my uncle's address? Did she think the staff would magically know where the card should go? I hope to find out.
Today (Thursday) my grandmother doesn't even recall the phone call. And she wouldn't eat breakfast--she said the food was horrible, and she hates it there. The staff is very leery about this--they're not happy about the bird situation, and they've already said to my mother that Grandma is not adjusting well.
I'll be adding to this, I think. First ETA: Fixed spelling errors, fleshed it out, added new information about the letter.
No comments necessary--it helps just to write it out, honestly.