Had a bad morning. Nigel was back in hospital for 48 hours as he aspirated, so they have changed his swallowing status which is not going down well with him. Wrote this this morning to get rid of how I was feeling: AliBee xxx
Feeling Under Pressure:-
I’m feeling under pressure.
I’ve lost a life of my own.
I even feel ratty when I hear the phone.
I’m feeling under pressure.
My husband has changed,
and my role as his wife has been re-arranged.
I’m feeling under pressure.
My life in disorder:
whilst giving his meds, he makes me feel like a warder.
I’m feeling under pressure
He has no concept of time,
and thickening his drinks he thinks is a crime.
I’m feeling under pressure.
The eye rolls and glare,
make me wonder if he knows I care.
I’m feeling under pressure.
My morning self-care on delay,
but I know in his heart he still loves me: that’s not gone astray.
Written by
AliBee1
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Oh don't we all understand. I often want to shout and throw things but know it won't make any difference, tomorrow will be the same! Keep on posting here, it does help.
Thank you. Posting certainly helps and the lovely replies makes one realise that one is not on one's own - not that you want anyone else to be going through it. xxx
Ali look into his eyes and let him look into yours You both will feel the love for each other is still strong They say the one a person loves the most feels the most hurt .I'm sure he knows what you are doing for him is out of love A carers roll is so demanding with little thanks but it's done with love and that means so much .At the end of the day and a twelve hour shift I am lucky I can go home to my family and relax till the following day Carers at home don't have the opportunity. You should try to find some me time as I call it Try your local carers group Ours do massages and social afternoons It will help I'm sure to unwind even if it's only a little You need to look after yourself also I send you a massive hug and any help is may be able to give via chat .
Hi. Thank you for your reply and advice. My problem at present is that I am recovering from a new hip operation which dislocated after 10 days so I cannot drive and have to sit on chairs no lower than 19" due to my long legs. I have started to draw again which is very therapeutic and I am getting very good with my helping hand grabber in picking up the lovely cooking apples which are falling off the tree in our garden. I love gardening, one of my 'me' things, but as I cannot bend right now I have to look at weeds, but yesterday I got the secateurs and had a good go at dead wood/overgrown roses which did me so much good. Thanks for the hug . AliBee xx
ALWAYS ALRIGHT TO OFFLOAD ON HERE. We've been there and we know what it's like
Love has many forms and somehow we recognise it when we see it even if it is not what we expect. Victor only started to get mild dementia towards the end of his MSA. He was in hospital after a fall and really desperate to come home. When I finally got him home he announced that this looked just like his home but was definitely not. However since I had unaccountably gone mad and thought it was then he was quite happy to stay with me in this place until I got MY head sorted out. That was love.
That is lovely. Nigel insisted midnight was midday last night so in the end I agreed and we had a snack lunch at midnight !! Love does help and after we had had our snack and I finally got him back to bed he put his hand out to me, which made everything worthwhile xx Love AliBee xx
Sometimes it feels so frustrating that there doesn't seem to be much we can do practically to help to support you, so I just hope that you've been able to offload some of your feelings and feel a bit better for it. That you've even managed to do it in rhyme shows your strength of character!
It can't be a complete answer, I know. It's such a tough life, that of a Carer and all I do know is that whatever you might think of your shortcomings, you are a superb one, because you have the main ingredient. You care. Deeply. And we all care for you too and join with you in your struggles to stay afloat in all of your challenges.
There will be many of us thinking of you today after reading your post, and I hope that thought will bring you a little bit of comfort. Love and very best wishes.
Thank you. I can feel the support. It is lovely. Nigel had a really bad night again last night insisting it was day time around midnight and getting very cross with me verbally but getting more and more slurred the more agitated he got. Looking back I realise that I should have just gone with the flow and got up with him as when I finally did that, he calmed down and eventually came to bed and that is when he put his hand out to me. Another lesson learnt.
I am so lucky to be able to express how I feel in words. After my 1st husband died of cancer aged 55 I started writing poetry which I self publish and which have raised thousands of pounds for Macmillan. Below is inside the front cover of book 2: I didn't think that I would need to be using words again like this in this marriage that I have now.
Flight
Chris said that he envied my love of words.
I'm so lucky I can use them like the flight of birds,
To take my feelings and set them free,
To float on the thermals leaving me free to find me.
That's something, at the moment, that is hard to do,
For whatever I'm doing, erratic feelings come too.
These feelings can soar like the eagle in flight,
Or plummet, like the owl on its prey at night.
Gone are the days when my feelings could slide,
Like the albatross in a gentle glide.
AliBee xx
Lovely AliBee1. You have a talent and put it to great use. xx
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Feeling guilty
