Stressed up to the limit today - but ok!!

[Helen33]

After yesterdays emotional rollercoaster for Alan (and myself) it somehow meant that Alan missed his afternoon rest. This meant he was not particularly amenable with the sitter at (Moderator note: care home name removed as per T & Cs) last night whilst I worked. He went to bed fairly early but was restless throughout the night and so he didn't have good quality sleep. This resulted in him being irritable with the sitter this morning.

I was running very late this morning. I had to attend something to do with my sister. I also had to do some essential shopping. On the way to my sister's I was experiencing extreme stress, anxiety and worry about myself. I was feeling like I was in a sort of fog. I remembered Tuesday and not remembering what year it was and not being able to work out when 1995 was I kept thinking it was three years ago and got confused by it. I didn't realise until nearly a day later the length of time betweeb 1995 and today's date When I got to the do, the new Manager kept saying that she was so pleased that I'd been able to attend and that I was wonderful I told her how stressful it was in order to be able to attend and she was not interested - she was only able to offer me the spiel about how pleased she was that I'd attended. It caused me even more stress because of her inability to recognise the seriousness of what I was telling her. I actually told her that I felt I, too, had a dementia and was finding it very difficult right at that moment. She ignored me and wanted to introduce me to so and so, and then so and so. I touched her arm and said "I don't think you are listening to what I am telling you. I can't, at this moment in time, take in one iota of additional information". I did not have the capacity to take in one single thing She then stopped and gave me some breathing room.

It was time to head off home to relieve the sitter and get ready for the dentist. It was throwing it down with rain and the car windscreen wipers wouldn't work I drove (without wipers) for about 2 miles in the middle of nowhere to a garage and asked if they could help me as it was an emergency that I get back home. When the mechanic started up the car the wipers came on I said I couldn't believe that and he said it happens sometimes and off I went.

When I got home Alan was sundowning and was unhappy with the sitter. I knew it wasn't the sitter because Alan was not alright this morning and I think it is simply because of all the emotions yesterday and him missing out on his afternoon rest.

I went for a filling to the dentist and had to take Alan with me because I daren't leave him home alone. The cold sharp air seemed to clear his head and he seemed a bit less lost and confused.

Tomorrow I have a massive meeting and needed Crossroads to come up with some extra sitting hours in order for me to attend. To cut a long and stressful story short, they have been able to find another one of his sitters to make up the extra time I then have to come back from this meeting and work.

After this week everything should calm down. I cannot possibly work at this capacity any more but I just have to get through this week.

Sorry for such a long post but I felt I wanted to share another side to life for me at times

Thank goodness for TP cos I daren't think where I'd be without you all.

Love

 

[larivy]

helen sorry you have had such a bad week i think with the lack of sleep we get and with everything else going on its no wonder we get confused. i think we are just on auto pilot most of the time and dont always realise whats going on outside our little world thats why is so nice having tp so we can have abit of normality in our lives (oh well with us lot i dont think it is normality after all)he! he!. hope things settle down for you and Alan lots of love and a big hug larivy

 

[Helen33]

Thanks Larivy. I'm sure you're right about the auto pilot I'm just having a sneaky look into TP before my client but later on I will post properly if Alan settles. I've noticed it's a full moon I've read about your mum's fall but didn't want to rush talking to you so I'll save it till later

Love

 

[gigi]

Hello Helen..

I've just started a very long and rambling post to you..and deleted it because Eric wants me beside him in the lounge...

All I want to say is that you're not alone.

I see that you're not sleeping well and having disturbed nights. That seems to go with the territory...and messes up your head.

For what it's worth I've spent weeks worrying because I couldn't remember the name of a plant... I could see the plant in my mind ..but the name wouldn't come. My little mutti sorted it on Tuesday..Montbretia..!

I also tried to ring my brother on his mobile the other night..only to realise he's changed jobs and has a different mobile number. The next morning I couldn't remember why I wanted to phone him. It took several hours before I remembered.

You will get through this...sometimes it feels like muddling through...but that's because you're tired and don't have the same clarity of thought. To regain the clarity you need time off for reflection and rest, which will happen.

Don't be too hard on yourself. You, like many of us here, are living an exceptional life.

Love xx

 

[sad nell]

Helen think our posts crossed seems we both have had one of those days, i too felt like shouting cannot any one see i just cannot take any more, hope you managed to work and that Alan has rested and more settled. tomorrow just has to be better, one positive i have completed my VAT accounts and i shall put up my tree tomorrow to cheer me , why dont you give it a try ,it always lifts my mood, except fot theawful mess i make in the process, jusr rambling now, but hope tomorrow is better for you, goodnight love pam

 

[lastday]

being human

hope things improve,i always find that on bad days or weeks,it suddenly clears,and i often forget how bad it was.
you posts help so many and your honesty when you have good days or bad days is majic, i know that i am not mad,just suffering from this illness.they say its not catching but i am not sure.
it can take me 20min some mornings to work out what day it is and if we have doctors,or collect medicens,or council,etc.
people say i should write it all down,but when i do it scares me,i think i wont be able to cope.i muddle through,and it works more often than not.last week on the way to hospital the car just stoped,i went into panick mode it then cleared,i got a taxi home,phoned hospital to rearrange ,and then a mobile mechanic who changed battery,all was well within 2 hours.
manythanks again to all moderaters you keep us going and let me know that what we are going through is normal for us.one day
at a time,and if that is to long one hour at a time.god bless all on tp.

 

[BeckyJan]

Hello Helen:

Good you shared this with us. I am so sorry but know there is nothing I can do to truly help. (How I wish!).

Life is getting harder for you - keeping up with Alan and your own work is bad enough, then to have your sister to worry about, plus any other issues that crop up. I cannot offer advice only to cut out anything you do not have to do.

Something says to me you need a break!

Love Jan

 

[Bookworm]

I'm just glad you are home safe Helen - maybe someone should check those wipers - if they did it once - maybe there is a loose connection - unless it is a very modern car & computer got tiz wozzed - my rear wiper e.g. won't stand for being turned on & off lots on one journey - it would be fine if I turned it on & left it on, or if I used it maybe 4 - 5 times - but otherwise it goes on strike until ignition turned off. Maybe you were so distressed you hadn't pressed the right button/knob.

I'm glad you have here Helen - you needed to let off steam - and now with busy season approaching you maybe need to decide what could be left out - e.g. hotel for Christmas dinner instead of worrying about the cooking & trimmings (maybe I need that too).

Something has to give or go - & it is not you or your safety.

With a little thought you could maybe cut back on one thing now and another in January - with us it is gardening - next thing for us will undoubtedly be a cleaner - look for opportunities to cut back anywhere you can. We gave up ironing years ago - don't know if the iron still works!! (Sorry to Shelagh - I would love to have my things ironed - it does look so nice.)

One thing I know - & I'm much further behind you on this journey - but things cannot stay the same for either of us without some investment of support.

You value your work - why wouldn't you - that has to be the last thing to go for me.......I'll do anything to retain it because I'm still quite young and will need it "afterwards". I think maybe you are the same.

You've done so well - today was a wee blip - but a warning too - take care - you need a little rest and comfort and a little hug from us all.

I hope I haven't said anything out of place. Love from Sue, xoxo

 

[susiesue]

Oh dear Helen - so sorry you are so stressed and hope Alan has calmed down a bit now.

Speak soon.

Love

 

[Grannie G]

Dear Helen

About a month ago I went to the doctor`s. When I arrived I was told there were 7 people in front of me and I might have a long wait.
The receptionist was surprised at my reaction, first tears, then preparation to leave. By my reckoning, having 7 people ahead of me meant I would not make it home in time for the sitter to leave.

The receptionist was surprised

She should not have been surprised. She was a doctor`s eceptionist and should have known the strain carers are under.
My BP was high. The doctor was concerned. He should have been concerned enough not to think it was OK to keep me waiting for one hour after the time of my appointment. I am a carer. I do not have unlimited free time.

In the same way the manager of the home should have understood the strain you are under. When you told her how stressed you had been on the way there she passed it over as trivial, and continued with her social duties introducing you to Tom, Dick and Harry. And even though you protested, she ignored your need.

This is one incident in a catalogue of incidents starting yesterday and continuing into today.
Or starting when Alan was first diagnosed with FTD and continuing into today.

It is telling on you Helen and something has got to go. It must not be you. You must start to learn to say `NO`

Love xx

 

[shelagh]

Dear Helen, Sometimes it has to be about you. You are so completely there for so many people and you are being depleted by it. Be kind to you or there will be a breaking point.
Love
Shelagh

 

[Helen33]

Thanks everyone. It does help to get it all out to you all and see the varying responses.

Bookworm Sue, You haven't said anything out of place and I think I know most of you well enough now to know that you all mean well as do I when I post to someone

I don't have a problem saying "NO" and have been working very hard to get my sister's care agency into good enough shape from the top down in order that I might let go. Tomorrow is the final meeting of the outcomes of all the investigations. I do know that it meant some people were sacked, some were removed from post and placed in more suitable positions, everyone is having to undergo continual training which has already started. It has had a shake up from the top to the bottom and I have fought for policy changes rather than personality changes. This will enable me to let go and know that my sister is properly cared for. I can't say "NO" to something so important.

I could and should have said "NO" to todays event with her.
I know for sure that I can't possibly take on anything significantly more than my care role with Alan and my part time work. I just need to get through tonight and tomorrow.

I picked Alan up from the care home with his sitter and Alan sternly said "where have you been?" He was very annoyed which is unusual. I will shock you all by saying that my response when we got home was "If you keep speaking to me like this you will end up living there" In my mind I was thinking "I can't cope with another night of sundowning on top of the day I've had"

I know, I'll post myself my own magic wand

Don't worry though because I will be fine and I won't allow myself to endure such stress for long especially as I've just had a reminder of how Alan is the one to suffer. Fancy me saying such a thing to him but I am hoping that he wouldn't understand with the speech and language problems!!