Getting frustrated - how to cope?

[babystar]

So I picked Mum up yesterday and brought her to mine for tea. We get to mine about half two, she sits and “watches” the telly with a cup of tea while I pootle about doing what needs to be done around the house.

Getting near time to sort the food and Mum comes out to the kitchen and goes in the back porch. I say to her, “What are you doing out there?”. No answer. “Mum? What are you doing out there?” Still no answer. So I go and look and she’s got one shoe on and putting her slippers away in her bag. So I tap her on the back and ask her why she’s putting her shoes on. No answer. Ask yet again and she says she’s putting her shoes on. So as a diversion I say to her I’m just about to dish the tea up and if she wants to sit to table I’ll bring it in, so to put her slippers back on. So then she carries on sorting the other shoe out instead and going to put it on. So I say “No Mum, you need to put your slippers on”. She carries on again so I point to the shoe she has on and say “You need to take this one off and put your slippers on”. So get the shoe off, put the slipper in front of her, and she starts putting her foot in the shoe again. So again – “No Mum, the slipper!”, and she starts laughing and I said “It’s not funny, Mum.”

I know I’ve written this blow by blow but trying to express how testing this one episode was to me! Although I know everyone will understand, and will probably have dealt with much worse, and be reading this wondering what the hell I’m moaning about. But I find this sort of behaviour hard to deal with. We often get ignored when trying to help. And the laughing makes it worse. Alongside this I’m trying not to take it personally when she makes comments such as “Well, pardon me for breathing” when I ask her a simple question like where she’s going.

As I said, I know it doesn’t sound like much, and I know things will get much worse. But if I’m getting stressed about this sort of thing now, what am I going to be like later?? If I physically try and manoeuvre her she tells me to stop pushing her about, and if I say anything I get ignored. I feel as if she does it on purpose, she can hear what I’m saying and just does the opposite. Is that all part of it too? Not that she just doesn’t understand but that she does understand and is purposefully being obstinate?

I have very little patience and I don’t want to end up losing my temper, but how do you cope with things that are so frustrating?

 

[Noorza]

First I totally understand how frustrating this is.


If she is fiddling with her shoes, I'd say she's occupied, it's not harmful, just let her carry on. Asking her why she has gone to the porch or wherever will lead to frustration because she won't know why she's there, to her it makes sense but she can't explain it.

The truth of it is there is not many of us who cope all the time, I don't. I would only say to pick your battles, if it's not hurting her or anyone else I wouldn't focus on it. If she laughs, try hard as it is not to take it personally, other ways that people with dementia deal with situations where they feel confused, is to hit out, physically or verbally.

It's really hard, I too have often wondered how much is deliberate and how much the disease. Impossible to tell for me.

 

[jaymor]

Hi,

I go with what Noorza says. Try to pick the battles that matter. Shoes or slippers, does it really matter?

I cared for my husband for 7 years as his sole carer and most days gritted my teeth, clenched by fists and let it all go over my head. If I had asked him what he was doing every time he went upstairs I would have lost my voice after the first couple of hours.

Frustrating as all the weird behaviour is try to at least to tolerate it or you will be exhausted and wound up so tight you might just break.

Take care,

Jay




Sent from my iPad using Talking Point mobile app

 

[Izzy]

Hi,

I go with what Noorza says. Try to pick the battles that matter. Shoes or slippers, does it really matter?

I cared for my husband for 7 years as his sole carer and most days gritted my teeth, clenched by fists and let it all go over my head. If I had asked him what he was doing every time he went upstairs I would have lost my voice after the first couple of hours.

Frustrating as all the weird behaviour is try to at least to tolerate it or you will be exhausted and wound up so tight you might just break.

Take care,

Jay
Sent from my iPad using Talking Point mobile app

I feel the same as Jay. There are times I can hear myself go into self destruct mode when I constantly ask what Bill is doing or why he's doing something. I know I shouldn't but I do. Other times I can just go with the flow. I think it depends how tired I am.

 

[CJinUSA]

My mother used to do that - laugh uncontrollably - when I would show up at her bedroom to help her complete her toilet in the middle of the night, sometimes 3, 4, 5 times because she was wetting herself, etc. It was very upsetting, because I of course was getting no sleep from monitoring her and knowing she couldn't complete her toilet by herself. Sometimes I'd come down and she had messed everywhere, and she would be laughing while I was cleaning the mess.

For the most part, she no longer does this, for which I am grateful, but it also means that she has reached a different stage, and she is sort of emotionally and mentally numb-seeming (it's hard to phrase).

My sense of your situation is that you have - you yourself have - X amount of time and you know that it will take X time to get it done. Your mother, whose world is sort of timeless now, is going to take Y amount of time, and then Z amount of time for everything. Adjusting to the fact that whatever you have to do with your mother is likely going to require Y time will help reduce the sense of frustration, at least in my experience.

The other thing I might suggest from my experience is that your mother might no longer know all the time or even some of the time the difference between shoes and slippers. Those are abstract terms. My mother no longer knows the different names for things - housecoat, bathrobe, socks, pants - but she'll know them if I am pointing to them or working them on her. So I talk with her about putting these things on her, to help ease her sense of loneliness amidst her inability to cope with the abstract terms.

I totally get your feelings and live them, periodically. I tend to do as others suggested and just let her go, except when she could be a problem to herself. You sound like your mother is still "with" you some, and that is a blessing you'll be grateful for as time goes on.

 

[babystar]

I think I am going to struggle to adjust to a new way of thinking. I know really that she doesn't think in the same realms that I think but I just can't get passed the big blaring thought in my head "WHY??!" when she starts doing something weird. Or what I consider weird, such as making to leave when she's come for tea and still to eat it! I'm expecting her to realise what she's doing and be like "oh, silly me, I haven't eaten yet!" but obviously she isn't going to.

I really was trying, I read to repeat the same phrase again and again, not change it in any way, so I was doing that. And to be fair, even if she didn't recognise the words "shoe" from "slipper" the fact that I was down on the floor pointing and positioning should surely be enough. Even after I myself put the damn slipper on her foot she took it off again!

As you suggest next time I won't say anything and she what happens after she's put the shoes on. I'm sure it'll happen again as it happened once before this time. I'll make sure to lock the back door up though so she can't wander off while I'm frantically trying to mash potatoes or something!

What would you suggest if, after I let her get on with it, she puts her coat on as well and says she's ready to go home? Just say wouldn't she like to have her tea first and then we'll go? I really hate telling her what to do and like to think she still has choices about what she does, although that may not be entirely true. Or should I be telling her no, sit down and eat your dinner?

 

[lexy]

I think I am going to struggle to adjust to a new way of thinking. I know really that she doesn't think in the same realms that I think but I just can't get passed the big blaring thought in my head "WHY??!" when she starts doing something weird. Or what I consider weird, such as making to leave when she's come for tea and still to eat it! I'm expecting her to realise what she's doing and be like "oh, silly me, I haven't eaten yet!" but obviously she isn't going to.

I really was trying, I read to repeat the same phrase again and again, not change it in any way, so I was doing that. And to be fair, even if she didn't recognise the words "shoe" from "slipper" the fact that I was down on the floor pointing and positioning should surely be enough. Even after I myself put the damn slipper on her foot she took it off again!

As you suggest next time I won't say anything and she what happens after she's put the shoes on. I'm sure it'll happen again as it happened once before this time. I'll make sure to lock the back door up though so she can't wander off while I'm frantically trying to mash potatoes or something!

What would you suggest if, after I let her get on with it, she puts her coat on as well and says she's ready to go home? Just say wouldn't she like to have her tea first and then we'll go? I really hate telling her what to do and like to think she still has choices about what she does, although that may not be entirely true. Or should I be telling her no, sit down and eat your dinner?

Hello Babystar

My mum used to do and say some very strange things when she had vascular dementia. One afternoon she sat in her chair calling me a "*****" I looked across at her and told her how much I loved her and shall we have a cup to tea, she smiled back at me and was fine again. There is little use in trying to reason with someone with dementia, they probably cannot understand, wherever my mum went "in her head" I went with her. Arguing with someone with this illness will cause them great distress, if she fiddles about and is not in danger of harming herself I would not worry too much. I know how frustrating this illness can be but remember your mum is not doing and saying things to hurt you. The thing I found most difficult to cope with were the repetitive questions!

 

[Katrine]

I do understand what you mean about choices. However, choosing between options gets harder and harder to manage when you have poor short-term memory. Even when a choice is made, that information is often no longer retained.

SIL went on trying to give her Mum choices and getting her informed consent to everything, way beyond where this was actually helpful to her Mum. To SIL it was a dignity and respect thing. To MIL it often caused confusion and stress or, like your mum, she would try to lighten the mood by making jokes or changing the subject because she didn't want to carry on talking about something she didn't understand. SIL would then raise her voice "LISTEN, MUM - THIS IS IMPORTANT". MIL knew that 'something' was important to her daughter so she would say whatever seemed to provoke a positive response, without understanding anything much. She was responding to the moods of her daughter rather than to the issue itself.

IMO it is more important not to stress Mum (and yourself!) by giving her unnecessary choices. Think more, what incentives and rewards can I offer? In the example you gave, the issue was really about getting her to come and eat with you. Everything else was a distraction, and you were frustrated because you had to deal with the distractions when you just wanted to serve the food you had cooked.

Perhaps it might help to simplify what you say to Mum in a similar situation? There's too much to process in her mind with slippers and shoes, and the view of the garden, and what is she doing, and come and get ready for tea. "Tea's on the table now, Mum, let's go in and eat" might just be sufficient. Or "Yum, Yum, cottage pie, it smells lovely" if you want to get her to go and sit down before you serve up.

 

[Spamar]

I agree with the others, you have to pick your battles. Also that giving them a choice just makes life difficult for both of you. I found it a very hard lesson to learn over the last 6 years since diagnosis and most of the time when I feel cheesed off is when I have expected too much, like a decision!

 

[CJinUSA]

"What would you suggest if, after I let her get on with it, she puts her coat on as well and says she's ready to go home? Just say wouldn't she like to have her tea first and then we'll go? I really hate telling her what to do and like to think she still has choices about what she does, although that may not be entirely true. Or should I be telling her no, sit down and eat your dinner?"

I like to suggest what we are doing, in instances like this. I might do this: O, I can see you are ready to go, Mom, but we were here to have some tea. Let's take off your coat and shoes, and let's put the slippers on, so we can go in and have our tea and cookies.

The idea here is to validate what she has done (rather than to "correct" it or suggest she did anything wrong). Then shift to whatever it is you wanted to do, in this case, have some tea.

It is *very* time-consuming, but even more, it requires ever so much patience. If you find you are losing your patience, step back a bit, maybe even leave the room. Our impatience can read to them that they are being bad or have done something wrong. It's simply that their reality differs from ours now, and instead of insisting our mothers be in our reality, we want to try to reach a different place *with* them, in their worlds.

In my view, of course.

 

[Noorza]

I think I am going to struggle to adjust to a new way of thinking. I know really that she doesn't think in the same realms that I think but I just can't get passed the big blaring thought in my head "WHY??!" when she starts doing something weird. Or what I consider weird, such as making to leave when she's come for tea and still to eat it! I'm expecting her to realise what she's doing and be like "oh, silly me, I haven't eaten yet!" but obviously she isn't going to.

I really was trying, I read to repeat the same phrase again and again, not change it in any way, so I was doing that. And to be fair, even if she didn't recognise the words "shoe" from "slipper" the fact that I was down on the floor pointing and positioning should surely be enough. Even after I myself put the damn slipper on her foot she took it off again!

As you suggest next time I won't say anything and she what happens after she's put the shoes on. I'm sure it'll happen again as it happened once before this time. I'll make sure to lock the back door up though so she can't wander off while I'm frantically trying to mash potatoes or something!

What would you suggest if, after I let her get on with it, she puts her coat on as well and says she's ready to go home? Just say wouldn't she like to have her tea first and then we'll go? I really hate telling her what to do and like to think she still has choices about what she does, although that may not be entirely true. Or should I be telling her no, sit down and eat your dinner?

Another option is to try to give her choices when the answer doesn't really matter. So she puts her coat on to go "Hey Mum, would you like to sit at the table or the sofa to eat your tea" or whatever choices are both acceptable to you. You aren't telling her but giving her a choice that falls within your acceptable parameters. Do you think that may work?

 

[babystar]

Yes, that all makes sense. Now the only trouble will be for me to implement it successfully!

If something inconsequential is happening I am just going to ignore it, not fight it, then divert attention in the direction that I need. Will just need to take some deep breaths and learn not to get wound up about the whole thing when, as you say, it's really not that important if she puts her shoes on.

I will continue offering selected choices too. This isn't too bad, although the answer isn't always the result e.g. "Do you want to watch Emmerdale here, or at home", "I'll watch Emmerdale here", Emmerdale has been on five minutes and Mum gets up and puts shoes on to leave. I don't question this, even though she said she wanted to stay, I assume she now wants to leave.

It feels like how I imagine you would treat a child. Don't offer them the choice of something that's not acceptable etc. I think I just need to accept this is the way it is now and get on with it...

 

[Noorza]

It's not easy I know but there is loads of information on this site about other ways to cope.

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200357

This link feeds into others about challenging behaviour.

None of us follow it to perfection that I know of so but all we can all do is our best.

 

[Katrine]

"Do you want to watch Emmerdale here, or at home", "I'll watch Emmerdale here", Emmerdale has been on five minutes and Mum gets up and puts shoes on to leave. I don't question this, even though she said she wanted to stay, I assume she now wants to leave.

Or, you just ignore it and redirect her until you are ready to leave. It sounds to me as if she gets restless because her ability to concentrate is poor. You will get wound up like a coiled spring if you assume that there is purpose to all this activity of hers. You might find she will sit still for longer if she has something to do with her hands, such as fiddling with a stuffed toy or cushion, or looking through a magazine. If you yourself want to finish watching Emmerdale then let her wander around if she's had enough of sitting down. Provided the doors are locked she will just potter about or look out of the window for a while. It is indeed like having a toddler to entertain - very short attention span.

 

[Aquamanda]

I totally relate to your frustration. I have little patience too and sometimes the smallest things can be so frustrating. We have had the same endless scenarios with me trying to get one slipper on and mother pulling the other one off, time and time again. Or I put cardigan on her. She puts the right arm in. I say put your other arm in, and she is totally confused, trying to put the right arm in the left sleeve etc etc. If you touch her, she says you have hurt her, and so on.
Maybe one practical thing you could do, if she comes to you with a coat and shoes and then changes into slippers, could you hide the coat and shoes away for the visit? Then she can't be after them all the time.