I am at breakdown today

[Countryboy]

Hi Helen You have had several replies mostly form other carers as a person with frontal-lobe-dementia myself I feel for Alan unfortunately our brain function is impaired personally I could build you a house but I couldn’t tell verbally, yet I can’t change my TV from digital box to video I go to get something say in the kitchen within seconds I can’t remember put eggs on to boil and let the pan boil I could go on all these thing gets me frustrated so much so that I could either laugh or start shouting and swearing this annoys my wife who then tells me to stop shouting and swearing this fuels my frustration / anger and I get louder than ever my worst fear is that one of these day it might turn to violence maybe best to let Alan do his own thing at his own pace “ps” it take ages to write this

cheers Tony

 

[lesmisralbles]

Tony

Hello
Calm down.
Why do you not tell us what you realy feel

I am not being rude. My Ron told me, and it helped.
Talk XX

Barb X

 

[BeckyJan]

what KBO means??

Its a Churchill thing in the first world war!! Keep b.g.rng on!!

Love Jan xx

 

[imac.girll1]

Helen,

What can I say other than I have been having many of those days lately.

My expectations are at times higher than they should be, and my only excuse is trying to do all the things that need done and hoping upon all hope that mother can do some of the little things

I would love to have a cleaner and gardener but the costing that we got for the gardener this summer was *shivers in memory of those quotes*

Don't feel guilty about 'here's your cat and hat, go out' scenario, as i often say it to mother when i just cant get a damn thing done, and shes sitting there saying i was going to do that in a minute! That minute never comes, so i realise!

So all in all, hugs and love to you, brandy works for me, Saturday was one of those days, lost count after the 4th!

xx

 

[Helen33]

Thanks everyone.

Hi Tony,

I really appreciate you taking the time to reply. I can imagine it takes ages to type it all up.

I think you are absolutely right. I know it wasn't Alan's fault and my behaviour was totally unacceptable and very unhelpful to him. It did take me by surprise and it was very frightening. I have learnt a very big lesson today. On the positive side, it makes me realise just how much attention I am able to give Alan to enable him to do things that make him feel good about himself. Today, though, for some reason I didn't have the time to give to him and made the mistake of thinking that he could help me!!

Love and best wishes

 

[larivy]

Helen hope things have settled down we have all been there im sure. i know i have. it just takes one silly thing to go wrong and that's it. blow the house work have a break if you had been at work it wouldn't have got done have a nice glass of wine and relax love larivy

 

[wiggy]

Love and hugs to you Helen, i hope tommorrow is a better day

 

[sad nell]

Helen my love , i remember well similar situations some 2 years ago, when i thought trev could help with me directing him, but he really could not, and i lost my rag too, (many times, whoops just tripped over a wing ,felt bad about myself for a while, then thought i really am doing the best i can, but i never asked trev to 'help' again unless he instigated it, think it was just holding a hosepipe , which he was incapable of and it drove me to distraction, but i also stopped expecting trev to do things and it did help us both, i was not giving up on him, just not putting him in the position to fail. Helen no one could look after Alan and work as you do with out these hicups, i also had bad day , shingles broke out again, work pressure ,difficult, sitter could not get here, was feeling ratty, customer gone belly up owing me thousands i was feeling really sorry for myself, tonight saw all those poor souls in the romanian care homes on tv and realise our lives are not that bad, and that are men are loved and well cared for,lets forget today and hope we all have a brighter tomorrow, good job you dont live round the corner eles i fear we would be filling buckets tonight, so shout a rude expletive at screen, (am becoming an expert at that)and go to bed with a smile love pam

 

[Barry]

Hi Helen,

This is a heart rendering account of what I’ve said before about the “Two Perspectives” in this illness, I could sense that on the one hand you were thinking great it’s my holiday and that even though the sitter had to cancel that by doing things together with Alan would be like past times which is a normal momentary laps into (lets imagine the illness is not there) and spend a happy day doing things together, but on the other hand I could sense Alan’s own inner confusions of who is this person with me throughout today changing any type of routine he has in his own mind, unfortunately Sumi has sometimes done the same thing to me lovingly thinking it would be like our past life together when we did things as a team but I get so confused it ends up in disaster and she ends up in her own tears from my malcontent with me being sent to the bedroom out the way!

It’s only natural to forget each others perspective of the condition yet for those of us with the illness we get to a point where we can no longer relate to it or understand what’s wrong in such a situation when any equilibrium goes out the window and it can become very frightening for all concerned.
I would say your idea of having a cleaner and gardener will be a great asset to you both as that’s exactly what Sumi and I have now done and we have a fantastic Lady who comes in everyday to do the housework, cooking, washing and ironing which has relieved a lot of the daily hassle for Sumi and also given her some time to do her own thing and just chat with her friends, neighbours and unwind, all I can say is that I hope you are able to find such a person as we have who is very calm and placid and takes my temperamental moments like ‘water off a ducks back’ so I’m am very comfortable to know she is also around the house if I’m left alone with her for a day so Sumi can go shopping or do what she wants.

Sorry as maybe I’m rambling on but I just wanted to say that you’re not alone with having such a moment and you certainly wasn’t the one who was wrong the only person to blame is ‘Mr D’ who is ever present yet shrouded, I think an important thing is to try and build a “New type of equal relationship” that embraces the illness from both perspectives.

Now just try to relax and enjoy the festive season together, the blessings of God be with you both and here is a guardian angel to help you which is exactly what all our care givers ought to have!


Love and best wishes
Barry and Sumi

 

[living in hope]

Hi Helen,
Your post brought back memories of when Brian did "jobs" while I was at work, and I came home to fine a section of lawn dug up! masking the window frames on new double glazed units (using brown parcel tape) vacuum in bits because it wouldn't work (not plugged in). Often I would just burst into tears and Brian would just look at me wondering what the problem was! we are not saints and at times it is difficult not to let our feelings show we need to shout and cry to release the emotion. I stopped asking Brian to do jobs whilst I was out, easier to do it together when I could supervise until that also got difficult. Then he would do jigsaws (50 piece ones) until that skill also went, it is a difficult line between encouraging independence as long as possible and setting them up to fail, we cannot always judge when skills have gone permanently or just temporarily, such a difficult illness to cope with for both parties!
Love
Lorraine

 

[Izzy]

Hi Helen. Sorry you had such a bad day. I have had to skim through a lot of the replies so sorry if I repeat things others have said. I so feel for you. I often feel like that with Bill. He looks so fit and healthy and he used to do everything round the house - including cleaning, ironing etc etc. Now he really doesn't do anything like that but thinks he does! I was getting to my wits end and spending every weekend getting angry with him because my weekend was being taken up with keeping the house semi clean. Not long ago I decided to get 2 hours of cleaning a week. I get the downstairs done and the upstairs fends for itself - nobody sees that!! I even more recently decided to get the ironing taken away and done! With mum here too we go through lots of laundry and I know I should leave lots of it un-ironed but this way it comes back all done and on hangers and just goes into the wardrobe. We get a gardener to come when we need it. I have found myself a lot calmer since then. It is costly but I'm going to keep it up as long as I can. We are also going to get carers in 3 times a day for mum after Christmas. I felt my work was beginning to suffer because of stress at home and I can't afford for that to happen. Sorry to ramble on about my own situation but I really do understand how you felt today. Take care. Izzy x

 

[Helen33]

Hello Barry,

What a wonderful message. Thank you so much. In all of my thinking today I never once thought about Alan being affected by the break in the usual routine I really like what you say about trying to find a different kind of equality taking into account the two perspectives.

I am absolutely shattered but Alan is quite calm sitting with his animals on the sofa. I will put it all behind me and will definitely not make the same mistake tomorrow.

The blessings of God be with you and your loved ones too Barry.
I appreciate your friendship

Love

 

[Helen33]

Thanks Izzy It's good to know that it helps to import even more help Has your mum's pain subsided any?

Love x

 

[Perdita]

Oh Helen I am so sorry you have had a rotten day, you are such a lovely person who is always there for us all.

As others have said you are being far too hard on yourself. I hope tomorrow is better and that you manage to have a lovely Christmas.

 

[Helen33]

Thank you Perdita. I will try to put it all behind me and start afresh tomorrow It was so frightening

Love

 

[ChristineR62]

Dear Helen

I thought I had left a reply here for you, but it looks like I fell into the "preview" trap again!

I'm so sorry you had such a stressful day, and I do hope you're managing to relax by now.

I can't remember exactly what I wrote, but I do remember there being a big hug and choccy biccies in it!

Have a little "Take care of Helen" time, and try to get a good night's sleep.

Love
Christine
xxx

 

[Helen33]

Thanks Christine, the choccy biccies are delicious I appreciate the hug too

Love

 

[Bookworm]

KBO is a Churchillian expression I think, Helen. Keep B.gg....g On. The more genteel version is Keep Calm and Carry On.
I hope you are feeling a bit better . . I'm so sorry your day went pear shaped so quickly. Poor you. x

Thanks Deborah - I need to hear this as well as Helen the 33rd special lady.... what can I say Helen - I go a bit this way maybe twice a month or once a week - that is something to do with my coming to understand things are changing, have changed beyond my worst nightmares. Ths may not be the same for you - but I can't keep up with the changes. I keep thinking the normality of some things he can do - does not match what he can't do -

Most of the time - 99.9999% you get it so very right, I am in total awe of your strength & ability - I get it wrong so much more often. Did you get it wrong today?? No you were just tired and something snuck up on you unawares and you just flipped. You are the same lovable you and Alan knows that & we know that more than he does perhaps?

Be more gentle on yourself, please?

Thankyou for sharing, xoxo, Sue

& yes gardener we have & cleaner next on list....

 

[hazytron]

Hi Helen
So sorry about your difficult day. Sometimes we lose control and feel so bad about it after the event but, steam has to escape somehow. You are but human and one who offers the rest of us so much support and guidance.
Hugs to you and hope of a better day tomorrow.
Hazel

 

[Tender Face]

In the true spirit of Christmas .... I wish for cleaners and gardeners for all those who need them but can’t afford them ... those living in ‘impossible households’ ... those trying to run two ......

Helen, I am not meaning to sound scathing – but the fact you couldn’t get ‘chores’ done is not the issue is it?

You mentioned recently a moment of ‘enlightenment’ – perhaps you can embrace this as another?

With genuine best wishes, Karen, x