It's been the worst day ever

[Helen33]

How on earth do I explain what I mean by the worst day ever?? Well I think I mean that I felt I couldn't cope at all today. It feels like I have stepped back in time 2 years or so to thinking that there is something wrong with our marriage Today I feel like the worst carer ever

Where did this all begin. I can only think that it began yesterday. I had the 6 hour sit and I had these 6 hours to myself. I really wanted to stay at home because it was a lovely day and there would be nowhere better than home with all the little luxuries. I went shopping to try to find clothes to fit my ever widening body and then I bought some plants at a garden centre. I had to think of ways to fill in the time so I went to another garden centre with my book. All the time I kept thinking "I'd rather be at home". I like my home. Just typing this makes me want to cry.

I am having a really bad day. I feel weak and unable to cope. People seem to cope with so much more than me. I am supposed to be joyful that I have been given 6 hours to myself.

Anyway I end up having a lovely day and enjoy reading my book in the garden centre in the sun. The moment I step back home I am in demand. Alan wants to tell me things that I cannot understand; the sitter is telling me enthusiastically all that has happened and I just want to say "Oh for goodness sake let me get through the door". I think the problem is that in the respite time I switched off and I am finding it so hard to switch back on.
I haven't managed to switch on today and everything is annoying me.

I feel I am going mad. I don't know what is reality any more. I keep remember all the people that have said to me "I don't know how you cope" and I have been very angry with them wondering what on earth they meant. Now I am wondering whether I am seeing what they were seeing

Anyway, tomorrow will be another day and I am hoping that things will get back to where I don't notice how bad things really are.

 

[julieann15]

Helen

Just wanted to send you a hug- needed at times by all

Love Julie xx

 

[BeckyJan]

Hello Helen:

I am so sorry that today has been a bad one. How can we fathom the complexity of wanting free time and space and the need to be with our loved one - almost impossible I reckon

I do hope you feel better tomorrow.

Love Jan

 

[Vonny]

Oh Helen, sometimes getting time to ourselves is so weird that it produces weird results. I think it's a bit like when you work flat out with never a thing wrong with you, then as soon as you go on holiday and start to relax, you get hit with colds, flu, cold sores, tonsilitis, you name it...!

I loathe going through my front door every day. I've had a full day at work, then up to mum's so it's well gone 6 by the time I get in, to be greeted by son asking can he have a cup of tea and 2 mad dogs wagging their tails and demanding attention. I often scream at them all

To be fair, son now waits until I'm actually through the door and have taken my coat off before badgering me

And Helen, please don't say that other people have more to cope with than you. You do a brilliant job with Alan but it is a lot to contend with. You will "switch back on" soon, and I hope you get some time to yourself again soon because you deserve it.

Vonny xxx

 

[sue38]

Hi Helen,

I'm sorry you weren't able to enjoy your 'time off' today. It's different for me as a daughter, because my home is still my sanctuary, and I realise how hard it must be for you.

Sending you big ((((hugs))))

 

[stikwik]

Saturday

Hi Helen,

I too had a difficult day yesterday and blogged it on my blogger site after being inspired by your blog with 'screen'. So thank you for that.

It's funny how often you say things that I too feel. My home is my everything to me too - it always has been for both of us as we don't enjoy drinking or going out for lots of meals (just 1 or 2 lunches a week - never evening). So I too only ever want time here on my own for respite and not an option to go out.

Is there any way this can be altered for you? I recall you saying Alan doesn't like to go to lots of places after each other so this may be harder, but even if just once a month the 5-6hrs can be with him out (with sitter), and you in, with some thought about how and where? Could he sit at Gunthorpe for hours with the odd walk to the cafe every now and again to break up the time? Can he do/does he enjoy art as something to focus on? Is he happy being driven around, so maybe a bit of a drive to Derbyshire, Bakewell, Matlock or Belvoir Castle to use up some time as well as the trip itself? It might be worth a try - unless I've missed something important about his needs I'm unaware of.

Steve doesn't like going out in particular without me, but I make him go (with sitters eg) for my own sanity and the alternative could be worse (I'm holding off the days respite issue whilst I can). He usually enjoys it in the end (but I know this is just my situ and not necessarily the case for everyone).

I also enjoy time in my shed so I'm nearby for him, but still feels like elsewhere, and I can work or play as I choose. (Our house isn't big so we all have a shed each for hobbies ;-)

 

[gigi]

Hello Helen...

You're certainly not the worst carer ever...but you are a Carer..and a human being...living a very strange life because your husband has dementia.

The fact that we feel "obliged" to leave our homes ,go out and "find" something to do with our time while someone else stays with our husbands is definitely not a normal way to lead a married life.

As well as running a home,working at your job,looking after the garden(beautifully, might I add..) and caring for yourself and Alan..you face the added disruption to your daily life of outsiders invading your privacy..but you also realise that without this help life would be much more difficult.

It's so hard to find the right balance, Helen; I don't think any of us ever will.

From my own experience all I can say is rejoice in the good days when they happen..and accept that there will also be bad days..and inbetween days.

Just think...tomorrow could be a good day... I certainly hope it is a better one for you!

Love xx

 

[living in hope]

Hi Helen
Sorry you are feeling down at the moment, Brian went to day care which meant he was out of the house, problem was so was I as I work part-time. Often I would pick him up and would no sooner get in the bungalow then he would say "what are we doing now" and all I wanted was to watch tele! No easy answers all we can do is try our best for our loved ones whilst not forgetting about ourselves!!
Love
Lorraine

 

[Scottie45]

Dear Helen

Sorry you had a bad day,and you are not a bad carer,i hope tomorrow is a better day for you,take care Marian xx

 

[Grannie G]

Dear Helen

I wish Dhiren would accept day care but he won`t. You would have a better life Helen if Alan could accept day care but it`s too busy for him. I do believe day care is a better option for carers but perhaps it`s a case of the grass being greener, I don`t know. I do know the four days Dhiren went to day care were good days for me. I didn`t do anything special, I didn`t need to. I stayed at home and recharged my batteries.

I do know I must find something constructive to do with any free time I get as I can`t imagine filling time away from home, week after week.
But we do have to return to out lives as carers and I feel a taste of `normality` only highlights our very abnormal lives.

Helen I wonder if it`s anything to do with it being the `weekend`. You have no work, so in theory could have no sitters. I imagine you would prefer to spend a leisurely weekend at home with Alan, going out if you feel like but under no compulsion.

You have been encouraged to have sitters to give you free time for yourself rather than for work, so that means sitters at the weekend. Which in turn means you must go out.

It`s a crazy situation and I take my hat off to anyone who gets the balance right.

 

[Bookworm]

Sorry , xoxo

Just sending a thought & will continue to think of you as i plough on with admin work tonight - been at it all w/e when not doing 2nd job or supporting son doing GCSE's. I'm with the person who suggests finding haven in your home with Alan out at times....I've rec. no help from hb today really when or where I needed it most as he was in garden all day - so I'm stressed & hungry but son fed so that is OK - but the great boon is he has been in garden all day - away from us...... - I guess he was happy (until he found me stressed!!).

 

[connie]

Dear Helen, nowise words I am sorry to say.

Just wanted you to know that I do know how you feel. No matter how hard we try, no matter what care packages we manage to get in place........life, with the dementia illness, will never be normal again.

Today I feel like the worst carer ever

That I would question. You are doing a grand job looking after Alan, but sometimes everything does get on top of us.

We would all like life to be as it was. Gigi has summed it up so well:

rejoice in the good days when they happen..and accept that there will also be bad days..and inbetween days.

I do hope your tomorrow will be brighter. Love n'hugs.

 

[Helen33]

Thank you

Thank you for your support. I've woken early and can see more clearly now that it is because I was finding it so hard to get back into giving my constant attention. I seem to feel better today and will pick myself up and start all over again

Love

 

[gigi]

Morning Helen......

That's 2 of us up early..contemplating the day!

It's rare that I wake before Eric..usually he drags me out of sleep..

This is one of those moments that I cherish..the house is peaceful(no TV) and I have time to collect myself before the next round.....

I seem to feel better today and will pick myself up and start all over again

....That's good to hear...have a good day...

 

[Grannie G]

Good morning Helen

I`m glad you feel more positive this morning Helen. The switching on and off might be the reason for your feelings of woe yesterday, but it might not be so easy to find a way round this in future.

It has just occurred to me......when I return to our sitter, she always greets me and asks how my time out has been. I`m the one who asks how Dhiren has been, she always wants to talk about me. Perhaps this is because she only really passes the time of day with Dhiren, or perhaps this is how she`s been trained to behave, I don`t know.

And Dhiren waits for me to go to him. He doesn`t come to me. Perhaps he isn`t sure who I am.

 

[Barry]

Hi Helen

I’ve just read your heart rendering story of what should have been some quality time for yourself, I know this might sound strange coming from a person like me that has dementia but I can actually understand what you where saying but from the sufferers perspective as its something that works both ways.

Many times I think I want to be alone for my own time of peace and quiet and when my wife goes out shopping I think great but the moment she comes back home I seem to jump on her like a ton of bricks which is very selfish of me as her time out shopping is her own quality time and the time to get away from my problem.

Sorry maybe that sounds a bit strange from a 4 year sufferer of the illness but as I said I do try to look at both perspectives and one thing this illness has made me realize is that it affects my wife who spends all her time looking after me far much more than me!
Now that’s a conundrum of our illness!

 

[sad nell]

Helen sorry you weekend was not as good as the weather hope today is happier for you, you certainley seem more like your old self, I too find it hard to leave home and the things i longed to do no longer hold the allure,think working & caring does bring a lot of stressm but i do not have an alternative, do you work through choice ir necessaty, Trev going into respite today instead of feeling relieved for the break i just feel sad. this desease messes with us all no matter how strong or positive we aim to be, just be kinder to yourself you are doing gteat girl love pam

 

[Skye]

It has just occurred to me......when I return to our sitter, she always greets me and asks how my time out has been. I`m the one who asks how Dhiren has been, she always wants to talk about me. Perhaps this is because she only really passes the time of day with Dhiren, or perhaps this is how she`s been trained to behave, I don`t know.

Sylvia, I found that with Crossroads, and I believe that they're trained to do that. Even when I got back right on the dot, they wouldn't leave without having a chat about what I'd done.

The manager made the point that Crossroads is for the carer, and the carer's welfare is what they are concerned with.

This contrasts with LA staff, who are there to do a specific job, and do not have travelling time factored in, so never have time for a chat.

It sounds as if your 'cleaner' operates the same way as Crossroads.

 

[Starshine]

Oh Helen I am so sorry you had such a bad day, hopefully things can be better today. Life is such sh.t sometimes, its hard to turn of at anytime, and harder to not be able to spend peaceful time in your own home, I feel such sadness for you. Miss my MIL like crazy, and when I was caring for her sometimes was worn out with it all, but would so want it back now, and knowing you and all your threads you will again be strong - just take care of yourself.
Starshine x

 

[hazytron]

Hi Helen

So sorry you felt so bad yesterday, I hope today will be better. It is so strange and yet perfectly normal how we can feel more able to cope some of the time and yet not all of the time.

It is not cast in stone that we have to be angels all the time!!

That is what I tell myself anyway!!

Regards Hazel