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Yep. Thank you. I do need to re evaluate and regroup because she's definitely taken a downturn the past couple of months.
Thanks for the book example. You might have been very patient about it - but did it bother you? Frustrate you? Did you have to pay for it? Explain it at the library? Explain why you weren't taking him to the library anymore? How did you handle it?
I hate dementia. It robs so much from so many people. It is pitiful to think of how small their worlds become and honestly, it's not even their fault.
Nope, it didn't really bother me that we won't be going to the library anymore. I rarely have time to read anyway.
Nope, it did not frustrate me, but it did make me sad that he is regressing.
Yes, I did have to pay for the book. I did not take the book in and just told them that my husband, with mild dementia, spilled water on it. It is possible that I would have just had a fine if I had brought it in but I did not want to upset Hubby as I do not think that he remembered that it was a library book. It was a new release and it looks like a pretty good book so I plan to read it when Hubby is finished reading it.
I will not explain to Hubby why we aren't going to the library as he does not decide where we are going each time that we go out. I will either say "We are going to do X" or give him a choice "Do you want to do Y or Z?" I'm driving and I'm in charge and I plan things that both of us will enjoy or are necessary (doctor's appointments, haircuts, errands, etc). He is just happy being with me, whether we are going to a pumpkin farm, the park, to get ice-cream or he is joining me for my errands like going grocery shopping or to the drug store. Now, in the unlikely event that he asks to go to the library I will probably tell him that we will go "later in the week" and he will probably forget about it.
I did remind him once not to tear pages out of books (as it makes them difficult to read) and to try not to spill anything on books, but other than that no explanation is needed. I did not remind him that this was a library book that needed to be returned, as he had clearly forgotten that. I am sure that it is also confusing for him as we sometimes buy used books at the library.
And, I definitely hate dementia.
Quote:
Originally Posted by Windwalker2
I think Kathryn that you maybe try to do too much explaining to your Mom. At some point with dementia, you just have to move on and accept that they won't get explanations any more.
Kathryn. I think connecting with your neighbor is a wonderful idea. After reading your comments about how she tears up at the the way her mother speaks to her, I found myself tearing up a little, too. I had a father who was quite sharp with his words and it didn't matter if we were in public or not. He said the most hurtful things to me that it made it difficult to be his caregiver, at times.
If (when) you see your neighbor again, please let her know that there are other people out there who are dealing with (or have dealt with) a parent that could be very challenging. More so, suggest a support group or one on one counseling to help her deal with it. She really does need to have a safe place where she can unload. The life of a sole caregiver is a lonely place. Even when it's finished, the effects linger for years.
You have a great opportunity to reach out to this neighbor. It may be a good thing for both of you. Also, I want to wish your brother all the best in his upcoming chemo treatment. It seems that when it rains, it pours. <sigh>
Last edited by JGC97; 10-10-2017 at 02:38 PM..
Reason: spelling
Location: Finally the house is done and we are in Port St. Lucie!
3,487 posts, read 3,338,908 times
Reputation: 9913
Quote:
Originally Posted by jencam
None of that explains crawling on hands and knees in a restaurant for trash. Or caring whether she puts combs in here hair. Telling her that bothers you is not venting in your safe space. It's picking on her about meaningless things.
Is there a shortage???????? God, I can't imagine anything more meaningless than that. They are paper napkins that are plentiful. You seek control over odd things. You act like there are two only and you must guard yours and save hers. If she is acting 'like a raccoon' due to this very reasonable nervous habit, what are you acting like making a Federal Case over freaking napkins that one can easily gain a stack of by simply asking at the start of the meal or any time thereafter?
Quote:
Originally Posted by jencam
OK we were posting at the same time. The napkin issue is not new. Get a stack at the start, end of story. Anything else makes -0- sense. It is incredulous the many times you've mentioned the napkin issue and haven't realized to do this already. You're very smart. Use your brain.
PS I wouldn't care how busy the restaurant was. I'd get up and go get napkins before I crawled on the floor for a part of one that is now filthy. That explanation makes no sense. I've gotten up and gone to get things a million times because they couldn't wait or I simply didn't want to. And you got yourself filthy too. Ew.
And you think KA is obsessed with this damn napkin?
Admittedly, I don't know you or your Mom. Neither do the other posters here, I think. But offering suggestions to help maintain your sanity seems fruitless because you continue to insist that she won't cooperate, no matter what you do.
I've offered what might be worth a try. What have you lost if it doesn't work?
I'm not trying to argue with you. I swear I'm not. I really do appreciate your suggestions and I have taken many suggestions from this forum and applied them.
For instance, the advice you give about telling her we're shortening the shopping trip is one I can do and that she'd probably be amenable or at least cooperative with. She may even be grateful, who knows? I am going to give that a try and thank you.
Unfortunately the purse advice is something I've already tried. I tried to find her and buy her a very nice purse with a zipper - she wasn't having it (neither of the purses she is currently carrying zip up). In fact, I did buy her one purse with a zipper, and she cut it up. Literally cut it up. With a pair of scissors. I am not kidding. (I've since taken those scissors but she will certainly find another pair somewhere around.) By the way, she was WITH me when I bought that purse for her, and she actually found it and claimed that she loved it. What can I do with that? Not much, I don't think. When I asked her why she cut her new purse up, she said, "I have my reasons. I didn't like it. I don't have to answer to you. I know why I did it." OK. And when she said that, I WANTED to say "OK, then that's the last time we go purse shopping together," but that would be "mean and controlling" so I don't do that - it wouldn't do any good anyway. Just "note to self - don't spend much money on purses for Mom."
I also bought her some very cute zippered bags and she was all excited about them -and carries them around in fact. But she empties them out and constantly puts all the junk back in her unzippered purse, and carries her lipstick and her talking watch in two separate zippered clutches - sometimes. Sometimes she carries nothing in them. Sometimes she puts a comb in them. The other day she had one piece of a magnifying glass in one, and another piece of a magnifying glass in the other one.
And lest anyone chalk this all up to increasing dementia - that's not even the case for it all. She has ALWAYS been absolutely terrible about keeping up with anything, including stuff in purses - and purses themselves. She's lost many purses over the years, long before dementia kicked in. Another thing she's been doing for DECADES is carrying around lipstick without tops on. I swear, she throws the tops away. I don't know why - but you can imagine the mess that makes occasionally. She also has been digging lipstick out of the tube with the wooden end of an eyebrow pencil and smearing it on her lips with that for at least 20 years. These things are nothing new, though they are decidedly weird. But my dad put up with them and would vent to me but honestly, there was no convincing her to keep the tops of lipstick tubes, or to let her fingernail polish dry before doing stuff so it wouldn't get smeared, or even keeping her thick, unruly hair in check with a few basics that most people use (maybe a curling iron, or some product, for instance).
She's been adamantly opposed to wearing deodorant for at least 15 years - before the dementia kicked in.
My mom is a very odd duck. Dementia has made her even more random and hard to work with, but she was driving my dad half out of his mind 20 or even 30 years ago - and it's only gotten worse after her stroke and subsequent vascular dementia.
So no, I'm not trying to argue with you, I swear I'm not - but some of the suggestions you and many others are offering (many with the best of intentions) simply don't address the depth of the behavior or the issues.
Last edited by KathrynAragon; 10-10-2017 at 04:26 PM..
For the record - for "readers looking for help" - neither of these situations is exclusive to your mother.
1) MOST dementia women are that way about their purses. It's probably the last thing they'll forget when going out. Even if "out" is down the hall. Especially when they're ramped up.
2) High-energy all-day activities are proven to be detrimental to them. Which explains why your mother probably had that crazy episode showing off her Depends and pajamas and getting naked or whatever to those people visiting who wouldn't leave.
Was this a psychiatrist and did he know she spends 3 days dressed waiting for the bus to go to church? She has BRAIN DAMAGE (not just dementia). Her neurological workup would likely show which things she has a failure with. Like TIME even IF she knows who the current President is in the cognitive screening.
People need to know the BASICS of dementia if they think they're going to learn something here.
I also suggest you consider the fact that your mother is NOT taking the Seroquel effectively and her behaviors will reflect it. And because nobody is monitoring her as they would in Assisted Living OR Memory Care, daily, where they'd actually know her well and understand her condition, and seeing her body language and hearing her statements. For example: Shredding can be anxiety, or manipulating fabric on their garments. Nobody can see her anxieties ramping up, for example on a Sunday before going on the all-day outing.
You're not supposed to "keep up with her". Even before this, she was BI-POLAR, right? You're supposed to control and facilitate her activities. Or not do them. You could start with not wandering around the store for your own shopping and letting her do the same.
I agree. I just do not know how to get this across aside from repeating how things work.
BTW if you"re still using A Place For Mom, they're only going to give you referrals to communities who are PAYING them a fee. Google it.
Hi, RWS.
As you have probably noticed, I often skim past some of your posts for various reasons
, but as you probably also know, I do respond positively when you are on target, and much of this post IS on target.
1. You're right - she is possessive about her purse and I do know this about women with dementia. We went through this as well with my MIL - however, she did not respond to things like my mother does at all, so it was a whole different game with her.
2. Also, with my MIL, we learned quickly that she was overstimulated by high energy activities. Up till recently, my mother was not overstimulated, because though she was dealing with mental illness and some stroke damage, she did not have much actual dementia and she was very upbeat and happy to get out and do things. But she's gotten progressively worse over the past few months and unfortunately I do see a big increase in her level of dementia. It's very sad to have to scale back on her activities because she WANTS to "go and do," but it has become apparent to me that this sort of activity is going to have to be curtailed. What my struggle now is with, is her desires vs her abilities. It's very sad for me not to be able to help my mom do the things she's enjoyed in the past. In the not too recent past in fact.
But long story short, I do agree with you - I have to curtail her activities.
3. The last neurological work up she had was three years ago. And she was FURIOUS about being subjected to that, believe me. The work up was with a psychiatrist and included a lot of testing (over several appointments, not all at once) and brain imaging. She also visits with a psychiatrist once a month (she resents that appointment and does not want to go - it's the one doctor's appointment that she's balky about). She would absolutely categorically deny to anyone within ear shot that she spends three days dressed for church, by the way, and honestly, she is still eloquent and still can be convincing, though less so now that she's got combs stuck in her hair and lipstick smeared in circles on her cheeks (two new developments).
4. Thank you for your concern about my mom's medications. However, she IS taking her Seroquel regularly and at the prescribed dosage. She IS being monitored for this (not sure why you think she's not) -I hired a meds administrator and she is very accessible and very experienced and "good with" her array of elderly patients, many of whom are meds resistant. And her dosage is being monitored by her psychiatrist as well. She has an upcoming appointment with him, which should be interesting.
5. I don't wander off from my mom - she wanders off from me. Let me explain how this happens. I took her to the cosmetics department, because as I told her before we got there, I did need to buy one item - ONE item - in the store. While I was paying for it (whole thing took about 5 minutes max) she wandered off. I couldn't find her anywhere. Finally found her in the baby department. So I didn't fuss at her at all. I took her over to the shoes, because she loves shoes and has a bunion and maybe we could find something she might like. So I'm looking at the racks of shoes, and she's right there with me, and I turned around and poof - she was gone again. I finally found her across the store, carrying a baby shirt that she wanted to buy for herself. But she wasn't in the baby department then - she'd wandered off with that shirt and was in the men's department. So I told her, "That's too small, let's find you something else" then we went upstairs and found her two shirts. I went to pay for them and while I'm paying for them, she announces, "I didn't walk in here with my cane, did I?" Well. actually yes she did. Now - I'm paying for her shirts (not mine, to be precise) and she jumps up and says, "I know where it is," and takes off down an aisle. Like a bat out of hell, actually - not at the usual excruciatingly slow pace she usually adopts - and by the time I finished paying for her two shirts, I can no longer see her - again. So I walk down that aisle, find her cane, and then start looking for her - and finally find her, leaning on the young man from the shoe department, telling him how good looking he is, and they are both across the store in the junior department.
AUGH!
I'm not using "A Place For Mom" by the way. I did use them for some screening, when I thought she might be able to keep her beloved cat, but I ended up going right back to the place we had my MIL at - and I've already put down a deposit on a room there. And no cat.
So I "get" how you think she's not at all supported (even though I've explained over and over again that this facility she's at is so close to "assisted living" that it basically IS assisted living - including the checking in on her every day, monitoring whether or not she goes to meals, going by and encouraging her to go to meals if she skips one, doing her laundry, cleaning her apartment weekly, etc). Her regular doctor makes "house calls" to this facility as well. And she has a professional meds administrator who checks on her every evening and gives her the meds.
Eight months ago, this would have been sufficient. It WAS sufficient. But Mom's taken a downturn lately and that's hard for me to accept emotionally because when she "loses" her belongings - her apartment, her kitchen, her closet, her private bathroom, and her CAT - it is going to be "me" who takes it all away from her. Now - logically I know it's not "me." It's the disease. But she will blame me, and I will be the one to do the heavy lifting so to speak. She will be furious with me and she will be so upset in general - though there's no doubt in my mind that eventually she will accept a new environment and adapt and probably do better in it. But she will lose a lot - and she will resent me for it. And it will be a ton of work for me, only to be hated for it. Not looking forward to that at all.
Your first post today was excellent and your second post with the following statement says it all.
****"Admittedly, I don't know you or your Mom. Neither do the other posters here, I think. But offering suggestions to help maintain your sanity seems fruitless because you continue to insist that she won't cooperate, no matter what you do"****
A person caring for someone with mental issues like dementia cannot make the person do what they want them to do. You have to fit into their world and that may mean taking each situation and trying to come up with inventive ways to get them to do things or just calm them down. Yes, it takes more time and patience but if it gets rid of the anger and frustration on both sides it is worth it.
It really does sound as though your mother has reached the point where going into places like restaurants and stores is too much stimulation for her. Same thing happened to my Mom. One day I took her to the shopping mall which she normally loves and we were there for 15 minutes and I could tell she was getting frustrated. All the sights and sounds and people were just upsetting to her and actually seem to be scaring her. It was just too much activity for her brain to handle. I tried it again two weeks later and the same thing happened. It was then I realized I had to change things and from that point I would just take her for car rides and maybe stop for something simple like ice cream.
Yes, your Mom is still going to want to go out to eat and shop because a part of her brain still remembers that is what she always liked to do. She is desperately trying to hold on to her "normal" life. I certainly wouldn't recommend that you stop taking your Mom anywhere. Probably more than anything she just wants to be outside for a while in the fresh air.
Perhaps you could find a small restaurant which only seats a few and go when it isn't busy. Would it be possible to take her to a smaller store? I'm thinking about something like one of the "dollar" stores. The ones around here are not that big and there aren't a lot of customers at any one time. She still gets the experience of shopping but less stimulation.
I agree with all this, and thank you for understanding and pointing out that you tried several times before realizing that it just can't continue. I just can't continue it.
I will have to continue the church thing for awhile, but I've made a change in that regard as well, because I've given my husband and me a break one week out of four - we tell her we're not going to church so she doesn't go - but then we do, and we enjoy a peaceful Sunday. Or we go to the lake together. It's been great. And I don't feel all that guilty!
So now I have to cut down the shopping to maybe Drug Emporium - because it has everything she needs really, not all that big, and she seems to enjoy it. I think she could handle that. As for the restaurant, her favorite is Cheddars and she always wants to go there, but that's where we were Sunday and it was so loud and distracting - I can't imagine that she was really enjoying it. So I'll put some thought into that.
She does like car rides and ice cream. She doesn't give a rat's patooty about fresh air anymore, which is disappointing and sort of surprising because she used to love working in the yard, going for walks, etc and I've tried that but to no avail. The last time I said, "Do you want to take a walk on the little garden trail?" she literally rolled her eyes at me and said, "Why on earth would you think I would want to do THAT?" I don't know, Mom - it just sounded like something nice to do with someone who used to love to work in the yard and go for walks.
But I think we're done with trips to the mall or even the grocery store - I think it all overstimulates her.
Thanks for the suggestions and for your understanding and honesty.
Suggestion. As Mom ramps down into a lower functioning level, then you ramp down your visiting activities. Cease the outings and shopping that she previously enjoyed when she was more capable. Do something light easy interesting and short. Then when she declines ramp down again.
She may be enjoying them less as well.
And it is just sadly progressive
Good luck
P.s. I just read previous post and was thinking of trips for ice cream too. (Great minds and so forth)
Thank you. And I also really like that idea. She loves ice cream. She also loves donuts. So between the two, that's a nice little outing.
She is going to also want to go somewhere else when I take her out - that's how she rolls - but I am going to just try saying, "Well, that's all for today, Mom but I'll see you in a few days!" and just taking her home.
I think Kathryn that you maybe try to do too much explaining to your Mom. At some point with dementia, you just have to move on and accept that they won't get (understand) explanations any more.
That's true - I was just wondering how germaine handled that with her husband - I mean, if he asked about going to the library. I'm pretty sure she didn't say "Well, you tore a book up from there, so we can't do that anymore," but I was wondering if he asked and if so, what she said, because my mom IS going to ask why we're not going and doing more. She's already asking. So far, I'm just saying "Well, shoot, I've been busier than a one armed paper hanger," and maybe I just need to keep saying that.
Kathryn. I think connecting with your neighbor is a wonderful idea. After reading your comments about how she tears up at the the way her mother speaks to her, I found myself tearing up a little, too. I had a father who was quite sharp with his words and it didn't matter if we were in public or not. He said the most hurtful things to me that it made it difficult to be his caregiver, at times.
If (when) you see your neighbor again, please let her know that there are other people out there who are dealing with (or have dealt with) a parent that could be very challenging. More so, suggest a support group or one on one counseling to help her deal with it. She really does need to have a safe place where she can unload. The life of a sole caregiver is a lonely place. Even when it's finished, the effects linger for years.
You have a great opportunity to reach out to this neighbor. It may be a good thing for both of you. Also, I want to wish your brother all the best in his upcoming chemo treatment. It seems that when it rains, it pours. <sigh>
Thank you so much.
Definitely going to reach out to her. She has it rougher than me, I think.
If you haven't lived with a verbally abusive (or otherwise abusive) parent, it may be hard to imagine how hurtful their comments can be, even when you know they're not completely in their right mind. I mean, wow - they don't lose that sharp tongue, do they? Sheeze! How can they forget so much but retain that uncanny ability to cut to the bone with their words? When I saw my neighbor tear up, and then try to brush it off and continue pleasant conversation, my heart went out to her.
And you think KA is obsessed with this damn napkin?
I'm starting to laugh some at this exchange. I guess I'm not obsessed enough about filthy floors, because I didn't think picking up the napkin in the first place was such a major offense.
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It seems that when it rains, it pours. <sigh>
