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I do not agree with that. From a woman who buys more underwear rather than laundering them, I doubt she wants the piece of torn up trash over a new napkin. And she is easily distracted. And KA is stern about bigger things, so it would be simple to be stern about that napkin is gone. Here is a fresh one! How is your crispy chicken salad?
Your responses remind me a lot of how I used to interact with my dad when my Mom first had dementia and he was seeing things everyday. Over time, as I spent more time with Mom, I "got it."
Sometimes you don't get it until you've been there. I tried to explain it to you, it's not about a NAPKIN, it's about an OBSESSION. A fresh one wounld't have mattered because it wasn't abourt having something to wipe her mouth.
As for this thread, I'm going to stop responding to you on this topic because I'm sure the rest of the folks are tired of all the back and forth. At the end of the day, it doesn't matter what YOU think or what I think because we aren't there, we don't know all the dynamics, and it's not doing anyone any good.
I do too. I unpack my entire purse I don't care where I am until I find what I am looking for. A lot of these things are what many many healthy people do. Everything she does just drives you nuts. And instead of seeking a 'zen' attitude about it, you just get more an more irritated. And come here to express it over and over, feeding it, as I mentioned. It isn't healthy. If anyone has ever cared that I unpack my purse, they have had the grace to care more about me finding what I want to than what anyone thinks about me doing it. The one person who ever expressed crticism, I replied a bit like your Mom. 'Is it a crime? Calm yourself'. . And in fact that person happened to be so terribly rude/controlling in general that I no longer speak to him.
LOL you think she unpacks her purse? That's how you see it?
No wonder we're talking past each other. Dumping a purse is not "unpacking a purse." When I say she dumps her purse, I mean that literally, not figuratively. I mean she dumps it in my car, in the restaurant, anywhere - and not just her purse, but my purse if she can reach it, the glove compartment if I don't pull over - you name it. And when she dumps it (and it's a lot of random stuff - I won't even go into that now), she begins frantically digging around in it, kicking things under seats and tables, etc.
My mother gets frantic quickly, and she's very destructive. Sorry if you can't picture it. It always bothered my dad too. Long before the dementia, say she was faced with a package that was hard to open (reading instructions or looking at something to figure it out is not how she has ever operated). She will literally quickly just tear into something. And by tear into it, I mean literally tear something up to get into it.
Tag bothering you? Don't ask mom to cut it off - she'll just cut a hole in your shirt. Need to hang a picture? Mom won't waste time looking for a picture hanger or an appropriately sized nail or whatever - she'll grab a huge nail - I mean like a four inch nail - and wham it into the wall to hang a tiny picture. Need to open a box of crackers? Oh she'd open it alright - the box might be torn in half but by golly it was opened. Looking for something in the fridge? Ain't nobody got time fo dat. She'd just open another jar of jelly to add to the four jars of grape jelly already in the fridge. Put a top back on it? What's that - it doesn't need a top. Maybe she used the top to give the cat some water. Why not put water in the cat's bowl? Because she used the cat's bowl for a planter.
I learned very early on to do my own laundry, because Mom was not going to follow laundry instructions. Nope, even 50 years ago, everything went into the washer and dryer together - damn the instructions, too bad if everyone's underwear is pink now - so what if your sweater is now the size of a doll's sweater - things shouldn't need special care and if they do, too bad. So by the time I was about 6 years old, I was doing my own laundry. My dad never did learn this trick and was always upset about something she'd ruined in the wash. Oh, well.
KA, in my mind all this sounds horrific! I can't imagine scrambling around on a dirty restaurant floor, in parking lots and stores and god knows where else more than once. I can't imagine letting anyone put fingernail polish on in a restaurant in front of me. My heart goes out to other patrons having that toxic smell wafting by as they tried to eat. Combing ones hair at the table is considered bad form anywhere. Making a mess on the table with sugar and other condiments, well I sure hope you tipped the wait staff well for their troubles.
Now, with all of the above, and I bet it is the tip of the iceberg you probably have not shared the half of what goes on in public eating establishments, why do you take her out to eat?
My mother got really picky towards the end and in a restaurant would mostly just play with her food, complain about it not tasting right and make faces as if she were going to choke to get the point across that she didn't like it. She also pocketed, or mostly tried to, all the condiment packages on the table. She would say we "paid" for them so it was okay.
What I did to solve the problem and avoid further embarrassment was to only have a meal with her in her assisted living. Sometimes I would bring in something, from fast food to a nice homemade picnic basket of assorted things I knew she liked. She had a kitchenette so this was feasible and she would have leftovers for snacking. Other times we would go down the hall to the on-site restaurant and I would go as her guest. She really liked that because she was able to "show off" her child.
Why don't you consider doing something like I did? It sure would take a lot of emotional turmoil out of your meet ups with her. I can't fathom continuing to cater to her in restaurants knowing the train wreak is coming. It is akin to taking a toddler to a restaurant and letting him/her run wild. You do realize the things you have told us are probably causing embarrassment and unpleasantness to other nearby diners, don't you? You really need to stop it. Would be so much more healthy for the both of you.
I can't speak for KA, but I would imagine that she isn't taking her mom to a white table cloth establishment. If you go somewhere that's a popular destination for the blue-haired crowd, these things aren't as big a deal. I've dealt with less than pleasant situations both as their escort when taking a family member out, as a bouncer (odd, I know...long story), and as a bystander. Honestly, if I'm having Sunday brunch at a diner and someone brings in their elderly Dad or Mom and said person is a bit oblivious to talking loud or combing their hair or smells funny, I don't think anything of it.
We must appreciate that its likely a MUCH BIGGER treat for the Senior to get out of the home for a few minutes, and that its a MUCH BIGGER BURDEN on their caregiver, than it is for me to smell their depends. If I care to be that picky I'll go to a trendy location with a bloody Mary bar. Or out to eat at 8 PM, after they're in bed.
I can't speak for KA, but I would imagine that she isn't taking her mom to a white table cloth establishment. If you go somewhere that's a popular destination for the blue-haired crowd, these things aren't as big a deal. I've dealt with less than pleasant situations both as their escort when taking a family member out, as a bouncer (odd, I know...long story), and as a bystander. Honestly, if I'm having Sunday brunch at a diner and someone brings in their elderly Dad or Mom and said person is a bit oblivious to talking loud or combing their hair or smells funny, I don't think anything of it.
We must appreciate that its likely a MUCH BIGGER treat for the Senior to get out of the home for a few minutes, and that its a MUCH BIGGER BURDEN on their caregiver, than it is for me to smell their depends. If I care to be that picky I'll go to a trendy location with a bloody Mary bar. Or out to eat at 8 PM, after they're in bed.
Frankly, I am more bothered by unruly children when dining out than anything a dementia patient would do.
Kathryn -- so you brought up something the other day that I have been thinking a lot about. It's the fact that you said something about feeling like you were going to hell because you really didn't enjoy spending time with your Mom.
Why is it that people like you and I feel this way? Is it society that makes us feel like we MUST enjoy spending time with cranky people? Is it our own perception?
In my case, it couldn't be a legacy of how I was raised. My own parents didn't take care of THEIR parents -- my mom's folks lived in her home country, and my Dad rotated the responsibility of his parents with his siblings and his parents didn't live in our city anyway. So the most contact my Dad had with them was a visit every couple of months. (Remember, this was back when a long distance call cost money so there was no daily phoning).
But there are a lot of us who feel like we have to be the emotional crutch and social director of our elderly parents lives, and when we aren't, it eats away.
Where do you think this pressure comes from?
I look at my husband. He is a very caring and good son WHEN HIS MOTHER IS AROUND. Like when she lived with us for almost a year. However, when she is back home, I guarantee the only time he thinks about her and how she is doing is when I bring it up, or when she calls or emails. I'm the one calling to ask how her doc appointment went, as an example. He seems to have no guilt about not being in touch.
...and there is the truth to it all. Mom is ill and can't help it. Kathryn has yet to come to terms with that fact and continues to believe that Mom's dementia is mild. Mom is trying to hang on by her fingernails to her last shred of dignity which is why, when Kathryn reminds her that she has the day or the time wrong, she lashes out with "Of course I know that. I'm not stupid." She has no real defense because she can't distinguish between today or tomorrow. She simply doesn't remember being told not to put the dirty green comb in her hair. She shreds napkins because the activity keeps her engaged in reality.
When Kathryn finally accepts that there is no point in trying to make her Mom behave the way "normal" mothers behave, she may not have to vent.
As for her remark that she has "real friends" and "real family" who get what she's going through, that's her own pain talking. Everyone here has been supportive; even the critics who may sound harsh have attempted to let her know there may be a better way to handle the frustration.
Kathryn, your Mom cannot be permitted to carry nail polish in her purse. She cannot be permitted to carry a purse without a zipper. She needs to have a wrist tether on her cane. When she needs to shop, take her shopping and remember, this is not your shopping trip. For that, you go alone. The clothes on wrong-way-to can't be handled when she dresses for church. Deal with it. She is not allowed to share for-the-table appetizers except for getting a helping of same on her own plate. You are permitted...no, you are required to correct her when her behavior is wrong. Think of how you would have handled your own small children when they "acted up" in public and do it. Just bear in mind that you will have to speak up every time because she can't remember how she's supposed to act. She can't help it.
I think that covers just about everything except for the "smell". I have read this epistle from Day One and have waited for the answer to why there exists that terrible "smell". For a fastidious woman to have such an objectionable odor would be, were she aware of it, far more cruel than clothes on backwards. You really need to get to the bottom of this.
Good thoughts to your brother and to you and your family.
Thank you, theatergypsy, for a rational response.
I just don't know how to get this across because though what you say makes sense, I don't know how to implement the things you say MUST be implemented. Mom insists on carrying a purse. If she had a purse with a zipper, she would not zip it up - I promise you she wouldn't. She is non compliant to the core. And besides that, she is very "purse conscious" and LOVES her purses (she has several expensive ones) and wants to carry THOSE and is very proud of them - one of them in fact was a gift from my dad and one was a gift from me and she goes on and on about how much she loves these purses.
She also loves fingernail polish and other makeup and wants to buy it and use it constantly. I can't imagine her allowing me to go through her purse before we go somewhere. I will try to grab it if she's distracted and go through it to remove nail polish while she's not looking. That's a good idea. That way I don't have to correct her if she wants to paint her nails in public somewhere.
I don't bother anymore with the clothes on wrong at church - or anywhere else in public - it can't be helped. But I do correct her clothes in the privacy of her apartment - I feel like I need to do that. I know it matters to her and that she's doing what she can. I know she can't see well.
You'd just have to be around her to realize that until recently, her dementia WAS mild. This isn't just me talking, this is her doctors too. She did well on cognitive tests - not perfect but well enough - till recently. She's had a definite downturn when it comes to dementia and I'm trying to deal with it without curtailing things she loves to do so much. It's hard. My mom has always had a very high energy level and loves to go and do, go and do. She still wants to do that but it's getting a lot harder to keep up with her.
I've addressed the appetizer thing - LOL. No more worries there thank goodness.
As for the smell, for the love of God and for the life of me, I can't figure it out - I swear to God it seems like it just emanates from her pores. She is only on one medication now and the smell predated that medication and it is not listed anywhere as a side effect of that medication. So it's not that.
She refuses to wear deodorant or use any thing perfumed and I know she doesn't bathe regularly though she rarely LOOKS dirty. Her clothes are washed pretty regularly. It's not her clothes. It's HER. I can't for the life of me figure it out and neither can her doctors. It's very strange.
On a more positive note, she cannot smell it and does not notice it at all so I don't even mention it anymore. She gets very angry and defensive if I mention anything about personal hygiene.
But this too shall pass. She is headed in a downward direction and soon she simply won't be able to enjoy going out and doing her usual things for much longer, I don't think. Honestly, the last time I took her shopping, I think she didn't enjoy it much because I think she was too overwhelmed and easily confused. So there probably aren't many more shopping days left in her. That's sad. She's always loved to shop and wander around stores.
Also, I am going to move her to an assisted living facility soon. I have already put down the deposit and reserved the room for her. But she is not going to like it and I know that. She is going to hate the transition because she will be giving up her kitchen and her separate rooms - AND HER CAT. So of course I'm putting that off as long as possible because she really loves all three of those things. Oh, and her large closet.
But I think once she acclimates, she will actually like it better, because I really think she has too many confusing choices and places and too much personal stuff that confuses her right now. But she will hate losing that cat. HATE IT. I will feel terrible about that.
I think taking a break from your mom for awhile will be good for you, and possibly good for your mom. When she sees you again, she'll be really happy to see you.
I totally get that talking on the phone with her is getting harder. I had the same experience with my mom. It became so hard I quit calling, and half the time she didn't hear the phone ring anyway. But I missed our chatty phone calls a lot. Dementia isolates people from other people, and it is heartbreaking.
I am glad that your brother feels better. I know that lifts your spirits.
Like you, I have experienced and witnessed regrettable mother/adult daughter speech. I hated when I was experiencing it, and when I witnessed it. I don't think there is a solution because patterns of behavior are longstanding.
I want to encourage you to treat yourself in the next few days. Give yourself yourself some down time to recharge. Or do some mindless shopping! Your mom is safe; she is OK where she is. You need a break.
I can't speak for KA, but I would imagine that she isn't taking her mom to a white table cloth establishment. If you go somewhere that's a popular destination for the blue-haired crowd, these things aren't as big a deal. I've dealt with less than pleasant situations both as their escort when taking a family member out, as a bouncer (odd, I know...long story), and as a bystander. Honestly, if I'm having Sunday brunch at a diner and someone brings in their elderly Dad or Mom and said person is a bit oblivious to talking loud or combing their hair or smells funny, I don't think anything of it.
We must appreciate that its likely a MUCH BIGGER treat for the Senior to get out of the home for a few minutes, and that its a MUCH BIGGER BURDEN on their caregiver, than it is for me to smell their depends. If I care to be that picky I'll go to a trendy location with a bloody Mary bar. Or out to eat at 8 PM, after they're in bed.
Sometimes it seems like you may be trying too hard to make your mother have a "normal" life. I understand that she is your last parent and you want her to be more like your mother. If going to church puts her to sleep now, why must she go? I'm sure God will understand if she can't go any more. And why does she even need to carry a handbag, for example, when you take her out? Put whatever she needs in your purse for her. Why do you want to take her on these long outings and shopping trips that are so stressful for you? Give yourself a break. Let her make friends, or not, go on outings or not, where she is living now. Keep your visits to her short, and in her facility. Of course it's sad that she is not even what she was few years ago, and that she is declining, but you can't stop that happening. And your life needs to go on.
I'm sorry is this sounds too harsh.
I agree that it may be time to stop, or cut back, on some of your outings with your mom. Does the facility have church services on site? Many facilities do. Attending those with your mom may be a good transition from attending her former church with you and your husband.
Perhaps joining her for one meal a week at her facility instead of taking her to a restaurant for lunch.
Many women like to have a purse with them when they go out in public. Perhaps, start a new routine where mom has a special small "going out" purse, with a zipper, and a limited amount of things inside (no "junk"). If she doesn't have old dirty combs with her she won't be able to put them in her hair as decorations.
Sometimes changes can occur slowly over time and it is hard to realize them or recognize them and change with them. And, yes, it is very sad when this happens.
Hubby used to love going to the library and selecting new books to read. However, the last book that he checked out was ruined when he tore out several pages and, I believe, used them as bookmarks in other books that he was reading. He also spilled water all over the book. He used to be very careful with all books. When I showed him the book damage he had no idea what was wrong and clearly did not understand that this was not his personal book. So our days of checking out books at the library are probably over. As caregivers our expectations and activities need to change as the dementia increases.
My point is that at times caregivers/loved ones need to step back and reevaluate what they have been doing with their loved one. Is it still appropriate for the person with dementia? Is it still appropriate for the loved one? In your case, it appears that doing these activities with your mother is putting a lot of stress on you. It is OK to do less with her. She is in a great facility with a lot of activities. Let her be herself and start to do more things there.
Honestly, the last time I took her shopping, I think she didn't enjoy it much because I think she was too overwhelmed and easily confused. So there probably aren't many more shopping days left in her. That's sad. She's always loved to shop and wander around stores.
But I think once she acclimates, she will actually like it better, because I really think she has too many confusing choices and places and too much personal stuff that confuses her right now. But she will hate losing that cat. HATE IT. I will feel terrible about that.
I think you're right. This is an example of looking at things through "their" lens, not "our" lens. The things that are exciting to us make them agitated and confused.
Even I forget simple things like hearing loss. Dad used to LOVE going to movies, but lately he admitted he doesn't enjoy it anymore because he can't discern the dialogue (even with one of those audio sets.)
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. And in fact that person happened to be so terribly rude/controlling in general that I no longer speak to him.
