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Old 09-24-2009, 02:28 AM #1
gershonb gershonb is offline
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Unhappy Intro....Ack.....Help....

Hello
I'm gershonb and I also post over in the TBI section because of a history of a lot of concussions. I'm also a caregiver.

I need help because there is something going on with my wife and it's driving me starkers and there are a lot of elements to it. It is good to be able to share this in a Neurology forum because I'm seeing a lot of clinical things (I am a psychotherapist, among other things) but I also remember missing a lot of clinical things when my late wife had her brain tumor.

I met my present wife in 2004; she had also been widowed after 25 years of marriage and had used her late husband's insurance money to get some schooling. We were married in 2006. She is 58.

Where to begin.....I noticed periods of "oddness" that would come and go, but because I have periods of oddness, probably from being banged in the head a lot, I didn't pay attention. But several things started bothering me a few years ago and have really gotten much worse.

My wife seems incapable of being on time, for anything, or anyone. If she is to meet friends at a restaurant, she will show up an hour late. She did this with a former professor of hers, who really chewed her out about it, but the behavior did not change. She seems incapable of registering the fact that other people are waiting for her. If we are at a restaurant or anywhere else, she will go to the bathroom and often be gone for an hour. Part of this is because she has become incontinent, but she explains the rest as having to clean things properly, or ....something.

She accompanied me on a job interview weekend at a congregation; a member was to meet us at a certain time to give me a tour of the place. At the hotel, I could not get her to understand that we had to be on time; she kept saying that "it didn't matter if we were late." Well, we ended up 45 minutes late. It mattered. I talk to her about respect for others and punctuality, but she just goes on about everyone being "too rigid." It takes her up to three hours to prepare a meal. Everything, I mean EVERYTHING, takes a very very long time. Going to the store for a few things takes 3-4 hours. And--she just does not register how being so late affects other people. She had a hip replacement recently. When she was released from the hospital, her best friend and I arrived at 8pm to pick her up. She miraculously had packed ahead of time, but she fumfered around such that we finally left at a quarter to midnight. Then it took her until 5am to get to bed.

She also has hoarding disorder. When her late husband died, they were not living in a functional dwelling. Before we met, she hired a clutter specialist who worked with her for years--and finally gave up. Every horizontal surface in the house is covered with papers and fiddly bits and the things she collects--bags, napkins, straws, colored bottle tops, chopsticks, paper roll cobs. She says these are "art supplies" but she has not done any art for twenty years. She also has OCD kinds of behaviors: certain things have to be just exactly right. It's like living with Monk if he also had hoarding disorder.

Lately, as her physical health has deteriorated, I've become worried about mental lapses. She can't remember the names for things. She keeps track of her life with hundreds and thousands of little pieces of paper scattered and pasted all over the house. If you look in her pocketbook(s), each is brimming with a stack of little pieces of paper held together by a rubber band. Not only is she having trouble with noun retrieval, she occasionally says the exact opposite of what she means. She will say "turn right" when she means "turn left." She points at a green object and says that it is orange. There are suddenly big holes in her knowledge; a brilliant person with a masters' degree in art therapy can't remember where the Amazon river is. If I am telling her new information, she doesn't absorb it, and we have to go over some things several times until she finally writes it down. Talking with her is so ponderous that I find myself avoiding it; she can't just ask for something, but has to do a detailed, linear, step by step imitation of Mapquest directions for finding the margarine. In fact, a lot of her conversation consists of these detailed instructions.

When she is talking with friends in a group, she will interrupt or break in with vague, pleasant kinds of cliches about how wonderful everyone is, or something. I think she is trying to stop the conversation so her brain can catch up. But the person I met and fell in love with just isn't there a lot of the time.

She has not worked since 2000, but is constantly talking about how "we are going to start a new life together more wonderful than anything before." She did get one part time position as the art resource person at a Sunday school, but was fired after three weeks because she just couldn't grasp what she was supposed to do, rather than her ideal of what she wanted to do as a Teacher of Art. I am afraid that she will never work again. She doesn't really have any idea of what is going on in the job market, and relies on an idealized model of the person she once was rather than squarely assessing what she can and cannot do. She occasionally can complete a task, but my experience is that I cannot count on her to actually do what she says she is going to do. Her rituals, and wandering, and "churning" take precedence over other people's needs. Occasionally, she is "back" and we can talk and laugh and I can hope. But then she starts wandering back and forth, from room to room "doing this and that," but not visibly accomplishing anything. She becomes very defensive when this is brought up. Her MD has been trying to work with her on getting to bed at a decent hour, but she will come up at maybe 1 am and go through all these rituals and kind of restless wandering for hours, so she is rarely in bed before 3am. I am fearing that this isn't caregiver's insomnia, but the kind of Night Restlessness that you get with certain kinds of dementia. She's only 58, and I'm terrified that I'm losing her already.

I've been working with our psychiatrist and her MD to get a neuropsychological workup. She says that she is fine and doesn't need any such thing, but she'll do it "to help him relax." I've been a caregiver before, with my late wife's cancer, and I'm a professional caregiver, in hospice. I've never been as frightened as I am now. I've got my own health issues, and I'm just too exhausted or in pain (arthritis and Sjogren's syndrome) to go back and forth like a waiter, as a servant to her OCD stuff.

Usually, when someone does something that hurts you or others, and you tell them that this is hurtful, they try to change. I haven't seen this. What is even more painful is that my son and daughter, both grown, keep their distance--they don't even want to call the house because she might answer the phone, and though she loves them, she doesn't realize how her obsessive rituals and unawareness of time drive them up the wall. So they stay away.

So I'm sharing this as a caregiver because this kind of thing has caused my own world to constrict way in. She just had a second hip replacement after spending a year nonfunctional due to pain; now we found that her back is so bad that she will need back surgery. That means that our world will constrict even more. While she was in hospital I spent three weeks sorting through dozens of bags and baskets downstairs. There is nowhere to put anything because her fiddly bits or old clothes or sacred objects fill every available space. In our kitchen, we have only one square foot of usable counter space to make meals.

Well, I could get tendonitis going on and on about this. When we were at her doctor's office, I brought up the neuropsych referral, and her doctor (who has known her for 22 years) blurted out "Are you worried about Alzheimers?" At first, I felt like I wanted her to wash out her mouth with soap, but on reflection I think she was signalling that she has been worried about this for some time herself. But I have to tell you, nothing terrifies me as much as caregiving with ALZ, I'm worried about spending the rest of my life watching as this person I love slowly disappears. I'm only 57 and I sure as hell don't feel like being an old person yet. If it was cancer, I'd know what to do. I don't know what to do with this. How do you do caregiving in this situation without going mad?

Well this has been a long ramble. If anyone has any insight into how to deal with a)OCD, b)hoarding disorder, c)no concept of time/Executive Functioning disorder, d)progressive spinal deterioration, and e)possible early stage dementia, please let me know.

a stressed-out gershonb
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Old 09-24-2009, 07:09 AM #2
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Lightbulb

This sounds like a very difficult situation for you.

I have 2 thoughts.

1) have her B12 measured. Low B12 in the elderly mimics dementia. It should be above 500 ideally, but most doctors will tell you that a reading of 200 is "normal". It is not. If your wife uses acid blocking drugs for heartburn, or metformin for glucose control, these drugs deplete and lower B12. This can be very common in older adults. In fact the NIH recommends ALL people over 50 take an oral supplement. We have a sticky on our PN forum about this, and many posts on the Vitamin Forum.

2) the second thing, her incontinence combined with the behaviors:
http://www.emedicinehealth.com/norma...article_em.htm

Normal pressure hydrocephalus is often overlooked, and is not that uncommon. So I would get this evaluated ASAP as it can be treated.

I hope this helps.
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Old 09-24-2009, 08:36 AM #3
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Welcome. I just wanted to say Hello. I think Mrs. D has some ideas to
maybe start with and hopefully someone will come along with some more
words of wisdom.

This must be so hard for you. Please know we are here if you need to
"talk".
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Old 10-14-2009, 12:55 PM #4
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Hi and welcome to the boards. I am so sorry your going through this but hopefully with your persistance the docs will order up the right testing. I am caring for my hubby who has ms. He had minor OCD and still does on occasion but nothing serious.

My mom on the other hand just had brain surgery and I, like you, have no idea how to deal with it. Brain surgery and the outcome was and is not in my knowledge base so to speak. Anyway, I am learning and slowly grasping what we can do to help mom as well as encourage her to seek a neuropsych eval as well. She has anger outbursts, anxiety, memory issues and tremors when upset.

Come back to vent or whatever you need. We get it.
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Old 10-21-2009, 10:58 AM #5
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Default science news article & tips from a pack rat

saw an article dementia may be linked to both low and high blood sugar. how is her diet? has she had a blood test lately?

as a pack rat i put a lot of stuff in boxes. hobby idea is to make boxes to organize the stuff. challenge is to use existing stuff i have around to do it.

when i go in a box i have not been in years, sometimes i find i can donate it to the thrift store. so what i do is i put the date that i packed the box.

if buying boxes, i live in a humid climate, so i get plastic that won't colapse like cardboard. put heavies in small crates. china marker at home depot will help keep track of what's where. load heavy stuff on bottom, light stuff on top. sometimes the plastic still collapses. that's when you need shelves. hobby again is to make them. put together with screws. unscrew if you make a mistake or need to redesign.

stuff you use all the time. find a wall you can hang it on for easy access. saves on boxes.
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Old 11-11-2009, 06:31 PM #6
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Default desperation or dementia?

Quote:
Originally Posted by gershonb View Post
Hello
I'm gershonb and I also post over in the TBI section because of a history of a lot of concussions. I'm also a caregiver.

I need help because there is something going on with my wife and it's driving me starkers and there are a lot of elements to it. It is good to be able to share this in a Neurology forum because I'm seeing a lot of clinical things (I am a psychotherapist, among other things) but I also remember missing a lot of clinical things when my late wife had her brain tumor.

I met my present wife in 2004; she had also been widowed after 25 years of marriage and had used her late husband's insurance money to get some schooling. We were married in 2006. She is 58.

Where to begin.....I noticed periods of "oddness" that would come and go, but because I have periods of oddness, probably from being banged in the head a lot, I didn't pay attention. But several things started bothering me a few years ago and have really gotten much worse.

My wife seems incapable of being on time, for anything, or anyone. If she is to meet friends at a restaurant, she will show up an hour late. She did this with a former professor of hers, who really chewed her out about it, but the behavior did not change. She seems incapable of registering the fact that other people are waiting for her. If we are at a restaurant or anywhere else, she will go to the bathroom and often be gone for an hour. Part of this is because she has become incontinent, but she explains the rest as having to clean things properly, or ....something.

She accompanied me on a job interview weekend at a congregation; a member was to meet us at a certain time to give me a tour of the place. At the hotel, I could not get her to understand that we had to be on time; she kept saying that "it didn't matter if we were late." Well, we ended up 45 minutes late. It mattered. I talk to her about respect for others and punctuality, but she just goes on about everyone being "too rigid." It takes her up to three hours to prepare a meal. Everything, I mean EVERYTHING, takes a very very long time. Going to the store for a few things takes 3-4 hours. And--she just does not register how being so late affects other people. She had a hip replacement recently. When she was released from the hospital, her best friend and I arrived at 8pm to pick her up. She miraculously had packed ahead of time, but she fumfered around such that we finally left at a quarter to midnight. Then it took her until 5am to get to bed.

She also has hoarding disorder. When her late husband died, they were not living in a functional dwelling. Before we met, she hired a clutter specialist who worked with her for years--and finally gave up. Every horizontal surface in the house is covered with papers and fiddly bits and the things she collects--bags, napkins, straws, colored bottle tops, chopsticks, paper roll cobs. She says these are "art supplies" but she has not done any art for twenty years. She also has OCD kinds of behaviors: certain things have to be just exactly right. It's like living with Monk if he also had hoarding disorder.

Lately, as her physical health has deteriorated, I've become worried about mental lapses. She can't remember the names for things. She keeps track of her life with hundreds and thousands of little pieces of paper scattered and pasted all over the house. If you look in her pocketbook(s), each is brimming with a stack of little pieces of paper held together by a rubber band. Not only is she having trouble with noun retrieval, she occasionally says the exact opposite of what she means. She will say "turn right" when she means "turn left." She points at a green object and says that it is orange. There are suddenly big holes in her knowledge; a brilliant person with a masters' degree in art therapy can't remember where the Amazon river is. If I am telling her new information, she doesn't absorb it, and we have to go over some things several times until she finally writes it down. Talking with her is so ponderous that I find myself avoiding it; she can't just ask for something, but has to do a detailed, linear, step by step imitation of Mapquest directions for finding the margarine. In fact, a lot of her conversation consists of these detailed instructions.

When she is talking with friends in a group, she will interrupt or break in with vague, pleasant kinds of cliches about how wonderful everyone is, or something. I think she is trying to stop the conversation so her brain can catch up. But the person I met and fell in love with just isn't there a lot of the time.

She has not worked since 2000, but is constantly talking about how "we are going to start a new life together more wonderful than anything before." She did get one part time position as the art resource person at a Sunday school, but was fired after three weeks because she just couldn't grasp what she was supposed to do, rather than her ideal of what she wanted to do as a Teacher of Art. I am afraid that she will never work again. She doesn't really have any idea of what is going on in the job market, and relies on an idealized model of the person she once was rather than squarely assessing what she can and cannot do. She occasionally can complete a task, but my experience is that I cannot count on her to actually do what she says she is going to do. Her rituals, and wandering, and "churning" take precedence over other people's needs. Occasionally, she is "back" and we can talk and laugh and I can hope. But then she starts wandering back and forth, from room to room "doing this and that," but not visibly accomplishing anything. She becomes very defensive when this is brought up. Her MD has been trying to work with her on getting to bed at a decent hour, but she will come up at maybe 1 am and go through all these rituals and kind of restless wandering for hours, so she is rarely in bed before 3am. I am fearing that this isn't caregiver's insomnia, but the kind of Night Restlessness that you get with certain kinds of dementia. She's only 58, and I'm terrified that I'm losing her already.

I've been working with our psychiatrist and her MD to get a neuropsychological workup. She says that she is fine and doesn't need any such thing, but she'll do it "to help him relax." I've been a caregiver before, with my late wife's cancer, and I'm a professional caregiver, in hospice. I've never been as frightened as I am now. I've got my own health issues, and I'm just too exhausted or in pain (arthritis and Sjogren's syndrome) to go back and forth like a waiter, as a servant to her OCD stuff.

Usually, when someone does something that hurts you or others, and you tell them that this is hurtful, they try to change. I haven't seen this. What is even more painful is that my son and daughter, both grown, keep their distance--they don't even want to call the house because she might answer the phone, and though she loves them, she doesn't realize how her obsessive rituals and unawareness of time drive them up the wall. So they stay away.

So I'm sharing this as a caregiver because this kind of thing has caused my own world to constrict way in. She just had a second hip replacement after spending a year nonfunctional due to pain; now we found that her back is so bad that she will need back surgery. That means that our world will constrict even more. While she was in hospital I spent three weeks sorting through dozens of bags and baskets downstairs. There is nowhere to put anything because her fiddly bits or old clothes or sacred objects fill every available space. In our kitchen, we have only one square foot of usable counter space to make meals.

Well, I could get tendonitis going on and on about this. When we were at her doctor's office, I brought up the neuropsych referral, and her doctor (who has known her for 22 years) blurted out "Are you worried about Alzheimers?" At first, I felt like I wanted her to wash out her mouth with soap, but on reflection I think she was signalling that she has been worried about this for some time herself. But I have to tell you, nothing terrifies me as much as caregiving with ALZ, I'm worried about spending the rest of my life watching as this person I love slowly disappears. I'm only 57 and I sure as hell don't feel like being an old person yet. If it was cancer, I'd know what to do. I don't know what to do with this. How do you do caregiving in this situation without going mad?

Well this has been a long ramble. If anyone has any insight into how to deal with a)OCD, b)hoarding disorder, c)no concept of time/Executive Functioning disorder, d)progressive spinal deterioration, and e)possible early stage dementia, please let me know.

a stressed-out gershonb
Hi gershonb, so sad to hear all that both of you have endured. Mrs D as always has great skills in teasing out underlying conditions which might be in play.

I had a stroke about 7 years ago and decided to get a neuropsychiatric workup last year to check out my concerns, increasing difficulty in memory loss, and functioning within real time. And subtle changes. The test results were very revealing. I highly recommend the process to begin a base line quantitative measure of function/dysfunction. The next step might indicate a neurologist or psychiatric intervention. And no doubt some kind of nutritional therapy . It sounds like being in her body is hell, and being her husband is also hell. Hang in there and take one step at a time. The fact that you care for her is a blessing. It sounds like it is way past time to take steps to reduce stress for both of you. Good luck and Blessings to you Both!
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Old 11-18-2009, 11:30 PM #7
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Default words from a friend

my friend of several yrs told me yesterday that families fight and it does not mean they don't love each other. just the opposite. this was just what i needed to hear. passing it here in case it helps y'all too.

in my pack rat ism today i build a bookshelf of found lumber. one side is a sign that says trading post. a friend said it would look fine when i paint it. i mentioned i had no plans to paint and was going for a sanford and sons theme. he told me i was bad. my dad saw it and suggested using some of our found hinges on it and make a door. that idea i like (less dusting).

making something really cheered me up. it cost only electricity and screws.
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