No one knows

[Vitesse]

Thank you for all your comments , I realise that there are people who understand and I am gradually finding my way to deal with this awful condition. Fingers crossed, I've managed to get through the day without crying, Inspite of him telling people about it, how I've left him. so, so, cruel.

It’s so hard, but the only thing to do is grow a thick skin and let it go over your head. I have been through all the stages, sadness, anger, shouting and it gets you nowhere. It’s difficult to convince yourself that your OH doesn’t really understand what’s going on. Eventually you see the real situation and go with the flow. It’s not good, but keeps you sane.

 

[Jaded'n'faded]

This is one of the saddest, most heart-breaking threads on TP. (And there's a lot of competition!)

If the AS and others really want people to understand dementia - as it really is - this thread should be published in all the newspapers, on social media and on TV.

Heartfelt sympathy and my total admiration to you all.

 

[kindred]

This is one of the saddest, most heart-breaking threads on TP. (And there's a lot of competition!)

If the AS and others really want people to understand dementia - as it really is - this thread should be published in all the newspapers, on social media and on TV.

Heartfelt sympathy and my total admiration to you all.

So agree with you, it says it all. Thank you. kindredxx

 

[DesperateofDevon]

Thank you for all your comments , I realise that there are people who understand and I am gradually finding my way to deal with this awful condition. Fingers crossed, I've managed to get through the day without crying, Inspite of him telling people about it, how I've left him. so, so, cruel.

I felt like I was a character in a film , playing a different role each time it got rewound ?‍♀️

 

[DesperateofDevon]

Oh how awful it all sounds. I too am having a rough time and am wondering is it possible to feel any more down. At what point does one just give up, do the caring and just forget everything else. I am struggling with housework, the garden is a mess and I drink too much wine and eat lazily and badly (although I promise that OH eats very well). Have cut my working week to 3 days (i have carers when I’m out) thinking that would help but It hasn’t I tell myself to pull myself together but that is easier said than done as I guess many of you will know know.

… no more like award yourself a bigger glass to hold that wine lovely.
Sadly it’s the system that needs pulling together not you

I am full of admiration for those caring 24/7 - I certainly couldn’t do it
It’s bloody hard enough trying to navigate the system that’s a full time job to access care, let alone adding caring into the equation.
what would happen if you just said no … I’m not doing this … ?

 

[Thethirdmrsc]

Groundhog Day, that’s the film I am stuck in. Eat, don’t sleep, moan, ask questions and repeat.

 

[jennifer1967]

So agree with you, it says it all. Thank you. kindredxx

the worst bit being that they really dont care about the carers and there is not the services for the carer to access in these situations

 

[DesperateofDevon]

Groundhog Day, that’s the film I am stuck in. Eat, don’t sleep, moan, ask questions and repeat.

Snap!
horrid though it is - I keep hoping if I do something different that the outcome will change ?

 

[DesperateofDevon]

the worst bit being that they really dont care about the carers and there is not the services for the carer to access in these situations

Sadly the crisis has to happen before any action- “keep sticking to your guns & don’t let the buggers wear you down” my Dad used to say “ you know the truth & what’s the right thing to do “
sadly Social care doesn’t for some in this postcode lottery it seems xx

 

[Little moth]

I was taken by surprise yesterday having breakfast, he suddenly said you are my wife of 56 years!!!! No recollection of the past week, confused by the phone calls I had, it was hard to talk to memory clinic asking me how things were in front of him but going to the bedroom made it worse.
Later, he said he was going to see the bank manager to find out where our money has gone. I got the bank online but nothing could reassure him.
This morning he woke me up to say no hot water, it's fine, we went downstairs where he had been trying to make a drink, thoroughly confused. Made us a drink, he was a bit teary, I managed to get him to try to go back to sleep, where he is now.
I don't know if I am his wife today, possibly.

 

[lollyc]

Groundhog Day, that’s the film I am stuck in. Eat, don’t sleep, moan, ask questions and repeat.

Me too! Irony is that when we watched the film recently, Mum didn't get it at all.

 

[DesperateofDevon]

((((((((((((((Hugs)))))))))))))

 

[Scotlassie]

I do empathise with all you are going through. i was in your place earlier this year. I had tentatively approached SS as I was really struggling but they did not want to know unless it was actually a crisis. All last year I struggled and came to the end of my tether in April this year. My OH went into a home on 30th April we are self funding so in the end after discussion with our GP and the wider family we made the decision to place him in care. I have POA. due to COVID he had to isolate when first going to the home this was difficult but actually may have helped with the transition. I still feel So guilty and personally have a mix of good days and bad. What I am saying is our Lives are as important as those we care for. SS really need to take that on board. In the end I said quite categorically “I can not do this anymore” . Since admission to the home my OH has mentally deteriorated significantly but is still physically very well. I am making a different life for myself. My main worry now is how to deal with SS when we have to request support for his fees When our finds run out. Love to all carers look after yourselves you know when you can no longer deliver the care required. It does not mean you no longer care

 

[Bettysue]

I sympathise as I am almost at that tipping point. The double incontinence is wearing me down. I will be having a week’s respite soon and I need to see how he copes. I will then decide on the next move. I actually think he will be ok in care as the remnants of his jokey personality play up to carers at day care. So I am trying not to view it as totally negative.

 

[IreneMary]

I know exactly how you feel and so often there seems to be no way out.

My husband is quite capable of looking after his personal hygiene and preparing simple meals so unlike many other people with dementia, he is a long way off needing residential care. I need him to go into respite for my own mental health and welfare but that is not going to happen yet.

For me, it's not having a way out and not knowing how long it will be before it comes to the point of being able to move him into care.

We made a decision years ago to stay together because financially it seemed to be the sensible thing to do. If I had any idea of what my life was going to be like, I would have fled. But dementia is a creeping disease, it sneaks up on you or your partner with the warning signs being insidious and before you know it, you are suddenly a 'carer' without knowing or understanding what you are in for.

I hate it when people tell you that you have a choice. I made one a few years but now I feel trapped. The thought of what I would have to do for me to escape is mind boggling. Some people will tell you that you have a choice in how you respond to these events in your life but after years of living with this, you lose the ability to react that way.

From someone who knows, you have my sympathy. I hope that you can find ways to make the changes you need.

Wow - reading your thread I had to check I hadnt written it myself!
There is NO solution when they are still actively capable to a point and yet so incapable at the same time.
I sometimes think - may I should just get in the car and drive and never stop - I know thats not possible or practical but I can dream.
How long will this go on? Why me? Why you?
Sending a huge hug and telling you you are not alone!

 

[Lawson58]

Wow - reading your thread I had to check I hadnt written it myself!
There is NO solution when they are still actively capable to a point and yet so incapable at the same time.
I sometimes think - may I should just get in the car and drive and never stop - I know thats not possible or practical but I can dream.
How long will this go on? Why me? Why you?
Sending a huge hug and telling you you are not alone!

THANK YOU. Sometimes when we are having a bad day, I take off for the day and drive to a few of my favourite spots, walk along the beach, buy fish and chips, splurge at some of my hot shopping spots and come home when I am back in the right frame of mind.

And sometimes I ask myself 'Why not me?'and then realize that is a stupid question.

 

[Thethirdmrsc]

This last weekend has been very hard in terms of behaviour, and I decided last night I couldn’t do it anymore. If not now, when? Is the question. So I am utilising my 4 weeks carers respite, and getting a capacity assessment done, to see if he could enter full time care. i think he needs more stimulation than I can give, and I really feel that I am being dragged under with him. I am hoping that this won’t be a long battle for help.

 

[Thethirdmrsc]

So my OH went in to respite today for 2 weeks. It was supposed to be a week in October, but I got to last weekend and just couldn’t cope. After I dropped him off, I felt awful, like he’s died or something. Certainly not the euphoria I thought I would feel.

 

[jennifer1967]

So my OH went in to respite today for 2 weeks. It was supposed to be a week in October, but I got to last weekend and just couldn’t cope. After I dropped him off, I felt awful, like he’s died or something. Certainly not the euphoria I thought I would feel.

give it time and have a good rest and some nice conversation or quiet as you wish. kick the guilt monster off your shoulder and live a little

 

[DesperateofDevon]

I do empathise with all you are going through. i was in your place earlier this year. I had tentatively approached SS as I was really struggling but they did not want to know unless it was actually a crisis. All last year I struggled and came to the end of my tether in April this year. My OH went into a home on 30th April we are self funding so in the end after discussion with our GP and the wider family we made the decision to place him in care. I have POA. due to COVID he had to isolate when first going to the home this was difficult but actually may have helped with the transition. I still feel So guilty and personally have a mix of good days and bad. What I am saying is our Lives are as important as those we care for. SS really need to take that on board. In the end I said quite categorically “I can not do this anymore” . Since admission to the home my OH has mentally deteriorated significantly but is still physically very well. I am making a different life for myself. My main worry now is how to deal with SS when we have to request support for his fees When our finds run out. Love to all carers look after yourselves you know when you can no longer deliver the care required. It does not mean you no longer care

As your PWD has declined request a CHC assessment be done.
An independent social worker can be beneficial with self funding when doing assessments
x