I lost the plot tonight

[Floria Tosca]

I'm afraid I lost it tonight and lost my temper with OH. Last week he was having trouble with hearing aid and I rang the Audiologist who was having the week off over Christmas and not back til Tuesday 2nd Jan. I made appointment for hubby to see him on 2nd Jan at 11.30am.

Every day since i made the appointment my hubby has been getting ready to go and I've had to point out that his appointment is not 'today' but next Tuesday. He has been annoyed and saying I've changed it, which I haven't. This morning he woke me up at 7 am to say he was going to the gym and then to the Audiologist. I said that the gym is shut, it's New Years Day but he didn't believe me and I had to phone the gym and listen to the answering machine which confirmed they were closed. I also pointed out that the Audiologist appointment is tomorrow.

This afternoon hubby went to bed for an afternoon nap and he came downstairs at 6pm ready to go to Audiologist. I explained that it was 6 in the evening not 6 am. Anyway I persuaded him to change into leisurewear and we would have dinner and watch a movie then go to bed and in the morning he would go to the Audiologist. So we had dinner and watched the movie and at 10.00pm he said he'd better get ready to leave to drive to Audiologist. I said "look out of the window, it's night time and your appointment is tomorrow morning". He was cross and blamed me for changing things.

Anyway, long story short I lost the plot and told him I couldn't cope with this going over the same thing again and again and I was tired and stressed and I cried. He was mortified that I was crying but I couldn't help it. Every time we have an 'episode' he says he's going. I say where to? And then I worry he'll drive off so want to hide his car keys. I'm afraid I also told him to have a shower and wash his hair because I'm sick of changing the bed sheets because he doesn't shower often enough.

I feel ashamed that I lost it but I'm so fed up. Patience has never been my strong point. He's gone to bed now, bless him.

In the morning I've got to go to the surgery to get biopsy results for my FIL aged 93 (who also has vascular dementia), he had skin samples taken from his forehead to test for skin cancer. Why is it my job to sort FIL out also? Where are all his relatives hiding?

Glad I got all that off my chest, no-one to talk to at this time of night!!

 

[Soobee]

I am glad you wrote it all down, I hope it helps a bit to share here. It sounds like you'd need the patience of a saint not to react to your OH. Hopefully once the appointment is done with he will relax a little.

 

[Loopiloo]

I hope you feel the better for getting it of your chest and where else but here where so many of us really do understand. You do reach the end of your tether and we are not angels, just human beings trying to do our best.

We do feel ashamed for losing it, and regret it, but it can also be a release. And very few people we can talk to - how much worse if in desperation we talked to someone who did not have a clue what dementia is is like to live with and they in turn lost it with you?!

A lot - well most - well, all - you wrote is very familiar to me. There are times when it is a wonder we don't do worse than lose it.

I hope you managed to sleep and with no too early morning happenings....

Loo xx

 

[Mudgee Joy]

Hope you get a good nap today - or as I sometimes do when really tired - sleep through - !! Lovely.
Things always always seem, and probably are, worse at night. I try never to tell my H what appointments till the day - gets too keen - ready to go etc - he loves medical appointments ! Hopefully you are sleeping as I write !!

 

[Amy in the US]

@Floria Tosca, my mother used to be the same way about medical appointments, or indeed just about any appointment, going over and over her calendar and schedule until it would drive a saint mad. Except she had massive anxiety which seemed to exacerbate the whole thing.

I have heard many people here on TP advise to not tell the person about an appointment or trip or whatever, at all, or not until just before you leave. If only I'd known to try that with my mother!

We are only human and we do have limits and there's no shame in that. Is there any way someone else could help with your FIL? You have more than enough to be getting on with.

I also wonder about more help and support for you and your OH.

Hope you get some sleep, the appointment goes well, and remember this is always a safe place to vent. Best wishes.

 

[LadyA]

I agree. If you can, don't tell your husband about appointments until the day. I understand how frustrating it is, but he obviously has no sense of time, or concept of dates. I used to have to take my husband to town every day, even if where he wanted was shut - to prove it to him that it was closed! Thankfully, he didn't drive, so I didn't have that worry.

 

[Theresalwaystomorrow]

I think we all could of wrote that post, when I read it thoughts were that could of been me back along as I do what others say now, don’t say anything till it’s time.
Iv put few post on here out of frustration and the advice and help iv got back has been brilliant
Do what now I have to do, delegate ! This unfortunately is a very long drawn out process, years in fact and very few give their total life for it
Don’t feel selfish, your entitled to xxx

 

[rhubarbtree]

Hi Floria,

Your OH behaves a similar way to how my OH was last year. Fussing about appointments and shopping he thought was urgent. As others have said keep appointments secret until necessary but I would also suggest bigging up your organisational skills as well to establish his confidence in you. I say "you know I have got it all in hand" and remind him often of anything I have done to make his life easier. I can only think they must feel so worried and confused knowing they are not on top of everything. Give him permission to let you take over. Not that it is easy because now I worry about forgetting things. Set an alarm clock one afternoon last week because doctor's appointment was at 4pm and I thought I might get engrossed in something or more likely napping.

As for the driving off. It is a great worry. How is his driving? My OH was a great driver but navigation did for his driving career. This time last year he went to local shopping mall for my Christmas present and had to get the police involved finding his car. We went for a few months with my writing instructions on how to get to sports club but he would forget where he was going, get waylaid or return home. Hope you can drive. It is a relief when they stop.

We also have the hearing aid sagas as well. I have taken over care of these and try to remember to get them off him every night. Otherwise he sleeps in them and then is likely to get in the shower wearing them. They are an almighty faff but it is important the PWD has the best hearing possible in order to keep in touch. (I keep telling myself).

Same reluctance to shower here as well but ways and means have been discussed on other threads.

I too lose it sometimes but is it any wonder? All I can do is try to start each day with a clean slate.

 

[Bee.quilt]

I'm afraid I lost it tonight and lost my temper with OH. Last week he was having trouble with hearing aid and I rang the Audiologist who was having the week off over Christmas and not back til Tuesday 2nd Jan. I made appointment for hubby to see him on 2nd Jan at 11.30am.

Every day since i made the appointment my hubby has been getting ready to go and I've had to point out that his appointment is not 'today' but next Tuesday. He has been annoyed and saying I've changed it, which I haven't. This morning he woke me up at 7 am to say he was going to the gym and then to the Audiologist. I said that the gym is shut, it's New Years Day but he didn't believe me and I had to phone the gym and listen to the answering machine which confirmed they were closed. I also pointed out that the Audiologist appointment is tomorrow.

This afternoon hubby went to bed for an afternoon nap and he came downstairs at 6pm ready to go to Audiologist. I explained that it was 6 in the evening not 6 am. Anyway I persuaded him to change into leisurewear and we would have dinner and watch a movie then go to bed and in the morning he would go to the Audiologist. So we had dinner and watched the movie and at 10.00pm he said he'd better get ready to leave to drive to Audiologist. I said "look out of the window, it's night time and your appointment is tomorrow morning". He was cross and blamed me for changing things.

Anyway, long story short I lost the plot and told him I couldn't cope with this going over the same thing again and again and I was tired and stressed and I cried. He was mortified that I was crying but I couldn't help it. Every time we have an 'episode' he says he's going. I say where to? And then I worry he'll drive off so want to hide his car keys. I'm afraid I also told him to have a shower and wash his hair because I'm sick of changing the bed sheets because he doesn't shower often enough.

I feel ashamed that I lost it but I'm so fed up. Patience has never been my strong point. He's gone to bed now, bless him.

In the morning I've got to go to the surgery to get biopsy results for my FIL aged 93 (who also has vascular dementia), he had skin samples taken from his forehead to test for skin cancer. Why is it my job to sort FIL out also? Where are all his relatives hiding?

Glad I got all that off my chest, no-one to talk to at this time of night!!

 

[Bee.quilt]

So sad for you, but really? We're only humans doing a very trying job day and night. We cant give notice because we're needed, even if the rewards are rubbish and the employer is a trial. Have a weep, have a meltdown and then pick it all up and start again. You are doing a v good job to get this far. Well done you!

 

[Andrew_McP]

We do feel ashamed for losing it, and regret it, but it can also be a release.

All pressure cookers need a release valve, and sometimes all the usual venting systems (I try press-ups or my guitar or even running round the garden) fail. The patience well dries up and for a few moments anger and frustration are in control. How can they not see we're doing our best to help?

To me, this is perhaps when we get our best glimpse into the world of the dementia sufferer. Their whole lives are a turmoil of confusion and raw human emotion, unfiltered by reasoning. Which makes me feel even more guilty as regret washes away my outburst. I choose to do this, I repeat endlessly to myself, Mum doesn't.

My dark secret though is that sometimes losing my temper seems to help us both. When Mum gets locked into one of her obsessive whirlpools of fear, doubt, or rage, she needs rescuing. Sometimes slow, steady, patient tugging on the sanity lifeline works. Sometimes the whirlpool spits her out unexpectedly of its own accord. Sometimes the helicopter of distraction can lift her to safety. And sometimes she seems determined to dive deeper into the maelstrom... which is when I tend to run out of coping mechanisms and end up lobbing a big ugly hook into the water.

It can be a huge mistake, making things worse for a while. But the outburst which rages between us usually blows away some of the dementia fog and allows Mum to see that I'm there to help her, not hinder. Or it makes the fog so dense that she thinks this new, calmer me is a totally different person who's there to help! Either way, the storm seems be cathartic for both of us.

Or maybe I'm just trying to rationalize my shameful behaviour. All I know for certain is that caring for someone with dementia is the hardest thing I've ever attempted to do, so I try not to judge myself too harshly any more. If there's a dementia deity looking down on us, they can do the judging and are welcome to send down an angel or two to take over for a while. In the meantime, we're as good as it gets. It's not perfect, but life never was, is, or will be.

My roast potatoes aren't going to be perfect either if I sit here typing any longer. Yesterday went to pot rather than potato, but today the dinner deity is smiling on us and we're heading towards a decent New Year's Dinner. Whether I can persuade Mum to have any is a different matter. But at least the dog's keen.




PS I've tried cramming a few more awkward metaphors into this reply, but it's creaking at the seams already. ;-)

 

[Prudence9]

All pressure cookers need a release valve, and sometimes all the usual venting systems (I try press-ups or my guitar or even running round the garden) fail. The patience well dries up and for a few moments anger and frustration are in control. How can they not see we're doing our best to help?

To me, this is perhaps when we get our best glimpse into the world of the dementia sufferer. Their whole lives are a turmoil of confusion and raw human emotion, unfiltered by reasoning. Which makes me feel even more guilty as regret washes away my outburst. I choose to do this, I repeat endlessly to myself, Mum doesn't.

My dark secret though is that sometimes losing my temper seems to help us both. When Mum gets locked into one of her obsessive whirlpools of fear, doubt, or rage, she needs rescuing. Sometimes slow, steady, patient tugging on the sanity lifeline works. Sometimes the whirlpool spits her out unexpectedly of its own accord. Sometimes the helicopter of distraction can lift her to safety. And sometimes she seems determined to dive deeper into the maelstrom... which is when I tend to run out of coping mechanisms and end up lobbing a big ugly hook into the water.

It can be a huge mistake, making things worse for a while. But the outburst which rages between us usually blows away some of the dementia fog and allows Mum to see that I'm there to help her, not hinder. Or it makes the fog so dense that she thinks this new, calmer me is a totally different person who's there to help! Either way, the storm seems be cathartic for both of us.

Or maybe I'm just trying to rationalize my shameful behaviour. All I know for certain is that caring for someone with dementia is the hardest thing I've ever attempted to do, so I try not to judge myself too harshly any more. If there's a dementia deity looking down on us, they can do the judging and are welcome to send down an angel or two to take over for a while. In the meantime, we're as good as it gets. It's not perfect, but life never was, is, or will be.

My roast potatoes aren't going to be perfect either if I sit here typing any longer. Yesterday went to pot rather than potato, but today the dinner deity is smiling on us and we're heading towards a decent New Year's Dinner. Whether I can persuade Mum to have any is a different matter. But at least the dog's keen.




PS I've tried cramming a few more awkward metaphors into this reply, but it's creaking at the seams already. ;-)

Oh your post made me laugh Andrew, and I agree with the final blowing up bit, it sometimes used to make my Mum come back down to me. Don't do it now, she's gone past that stage bless her.
Keep it up with the metaphors - please!

@Floria Tosca I could not cope with that, I'm afraid you are a saint to me!
Do agree with others, don't say anything about appointments, days out etc until you're practically putting OHs coat on.

Please don't beat yourself up xxx

 

[Loopiloo]

I also agree with do not say anything about appointments etc., until as late as possible. I learned the hard way by making the huge mistake of writing such things down on paper and leaving it on the table near my husband as a reminder two or three days earlier. Stupidly thinking he would then digest and remember it.

The number of times a note can be read during a day and evening and again next morning, and the same questions repeated, is almost unbelievable.
Loo x

 

[Amethyst59]

I’d believe it! I had to write it out twice too...he lost the first one. I’m now trying the ‘not telling’

 

[MaddieJ]

I’d believe it! I had to write it out twice too...he lost the first one. I’m now trying the ‘not telling’

I empathise with this as I go through the same every time we are going somewhere OH likes. I try not to lose it but eventually I do after the frustration takes over. I thought about not saying until the appointment but he wants a calendar of events up on the wall to look at and keep looking at and drove me daft asking for one until I gave in and I can't take it away now. Blimey I nearly wrote the same post last week I was so infuriated and upset. There is just us two and no one else involved so it's hard. Reading all are having same issues is comforting but also frightening.

 

[Amethyst59]

I have a white board list of days and events....I’m afraid I just don’t write everything down. I know, for example, that if he knows he has a morning dental appointment, he will hardly sleep the night before (or let me sleep) for fear of missing the appointment.

 

[Mudgee Joy]

Yes agreed - as little information on future appointments as possible - if pestered I write notes but vague one - “doctor will Call next week”.

There are so many similarities - which gives us all some support - not just thinking “it’s only my problem”.
I am Glad my husband doesn’t ask for car anymore but has lost our spare keys.
I would like home to formally give up his drivers license. - any thoughts !?
M-joy

 

[Mipsydoo]

I am slowly learning through these pitfalls . Mum seems to get so stressed with appts and as I’m the dedicated sibling , I’ve been on the end of many irrational calls . It seems with my brothers organising her to do chores / activities through the day to keep her busy , she’s totally fine . When I try to guide her through appts or the latest battle ( notifing DVLA regarding diagnosis) unleashes another battle . I kind of want to make sure she’s in the loop , as she insists she’s not in control but the more info I make her aware of leads to upset . Hard to be the only one that can’t reason with her as my brothers have a tendency to tell her what she wants to hear . This frustratedly either makes my job harder by steering her back or as tonight , I’m public enemy number one ... again ! Life can be so stressful and it’s only Monday . These forums are my sanity savers

 

[Mudgee Joy]

Sorry you are having a hard time !!!
I’ve had a poor day today too - but mostly because my husband got too tired - appointment at 12 slid through to 2 pm - really nice doctor - but tiredness invariably leads to misunderstanding - disorientation- doesn’t know where we are etc etc
Maybe try talking to your mum when she is at her best !! Just after breakfast ?
All the very best M joy !

 

[Mipsydoo]

Sorry you are having a hard time !!!
I’ve had a poor day today too - but mostly because my husband got too tired - appointment at 12 slid through to 2 pm - really nice doctor - but tiredness invariably leads to misunderstanding - disorientation- doesn’t know where we are etc etc
Maybe try talking to your mum when she is at her best !! Just after breakfast ?
All the very best M joy !

Bless you , I think you’re right ... awaiting a good moment ... I think I’m the meantime I’ll try and relax . I think lack of sleep probably playing a part on my side ... need to able to switch off at night , just not happening .
Many thanks for you’re advice , hope you and yours have had a better day today M