How many of us......

[Agzy]

I wonder how many of us go to bed at night despairing after the day they have had?

And then toss and turn in the night, making plans to change things, maybe a care home, maybe insist to SS you have carer burn out, maybe running away, to finally fall asleep thinking you have made a plan.

Then you wake up in the morning, to a different day, and realise none of your plans will happen - that you will just carry on soldiering along, for love, or possibly because you cannot bear the unheavel that might come trying to make changes, or you are too tired to bother any more.....

I am renowned for waking with a smile and laugh but lately been a bit of a grimace and groan, but lucky in that OH has not hit the worst bits yet.

 

[AliceA]

It sounds like a tree with character!

Excellent, lets go for it!!!!
I have been ringing Social Services off and on yesterday and today - can't even get as far as the phone being answered. Just get the message that 'if the phones are busy, ring back later' - good job it's not an emergency - perhaps they are all away on holiday......

Good luck with SS. Let us know what happens!

 

[Banabarama]

I wonder how many of us go to bed at night despairing after the day they have had?

And then toss and turn in the night, making plans to change things, maybe a care home, maybe insist to SS you have carer burn out, maybe running away, to finally fall asleep thinking you have made a plan.

Then you wake up in the morning, to a different day, and realise none of your plans will happen - that you will just carry on soldiering along, for love, or possibly because you cannot bear the unheavel that might come trying to make changes, or you are too tired to bother any more.....

Yes, @maryjoan that really resonates, especially after the evening pantomime when I have to suffer a barrage of abuse (verbal - so far at least) and wimpish behaviour on a grand scale. It is so draining. And most evenings this happens. I seem to be the cause of all his woes but last night the carer’s inadequacies were also fed into the tirade - very upsetting as I thought she brightened his life up a bit - she is so bright and lovely. I started filming him ranting (amazingly he didn’t notice, so involved was he with his own woes, head is down and totally in his own world of persecution and misery). I watched it back - about 10 minutes. Think I may try doing this again and then take to doctor. He’s always so, so much better in front of doctor. I’m wondering whether some anti depressants might help. We’ve both always been so against them. But any port in a storm...

My dream is of having house to myself for a while - two weeks of respite would be grand. Time to relax, sleep (hopefully) and not have everything about him. But I fear it might only be worse - or at least feel worse - having to go back as before once he is here again. Does anyone have experience of this. Good or bad.

 

[jenniferjean]

I have been ringing Social Services off and on yesterday and today - can't even get as far as the phone being answered. Just get the message that 'if the phones are busy, ring back later' - good job it's not an emergency - perhaps they are all away on holiday......

Have you managed to get through to SS yet @maryjoan ? I tried ringing them once for three days on and off and gave up in the end.

 

[maryjoan]

Yes, @maryjoan that really resonates, especially after the evening pantomime when I have to suffer a barrage of abuse (verbal - so far at least) and wimpish behaviour on a grand scale. It is so draining. And most evenings this happens. I seem to be the cause of all his woes but last night the carer’s inadequacies were also fed into the tirade - very upsetting as I thought she brightened his life up a bit - she is so bright and lovely. I started filming him ranting (amazingly he didn’t notice, so involved was he with his own woes, head is down and totally in his own world of persecution and misery). I watched it back - about 10 minutes. Think I may try doing this again and then take to doctor. He’s always so, so much better in front of doctor. I’m wondering whether some anti depressants might help. We’ve both always been so against them. But any port in a storm...

My dream is of having house to myself for a while - two weeks of respite would be grand. Time to relax, sleep (hopefully) and not have everything about him. But I fear it might only be worse - or at least feel worse - having to go back as before once he is here again. Does anyone have experience of this. Good or bad.

I think you wrote this for me!!! I feel exactly the same - respite sounds wonderful but it is like getting out of jail just to go back again.

 

[bmca]

That is an idea, three meals a day and no house work!

 

[bmca]

That is an idea, three meals a day and no house work!

Dreaming? Would settle for a long enough garden so my screams could not be heard from the house. Don't feel like that often but!!!!!

 

[Guzelle]

I’d love 2 Weeks respite but he won’t agree to it. I took him to visit an old friend and she was asking about our daughter who is 32 weeks pregnant and he said he’s doesn’t want a baby in the house and is sick of hearing about it!

I could hit him he is so nasty and selfish if it isn’t about him he doesn’t want to know, He is taking risperidone Twice per day which keep him calm and much less aggressive but it doesn’t stop the selfishness.

If he did go into respite I don’t think I would want him back.

 

[AliceA]

I do not think any medication will help the selfishness, this lack of empathy is often the first thing to go. I was forewarned and therefore pre armed but of course it still hurts on occasions especially whenI myself am ill.

Take a deep breath and enjoy the forthcoming child's arrival.

I do mention respite in the context if I am ill and unable to look after you for a while. He does seem to realise this is a possiblility at the time. I fear only in theory.

 

[Guzelle]

The lack of empathy and being unreasonable is what annoys me the most.
I’ve had about 10 years of it although only diagnosed 3 years but his personality changed then and only got worse over the years. It’s the not being able to do much we were going to go on a cruise on my 60th birthday which was Sunday but can’t face doing that with him it would be too stressful. All he does is criticise and complain nearly all day long. It makes me want to scream!

 

[Banabarama]

The lack of empathy and being unreasonable is what annoys me the most.
I’ve had about 10 years of it although only diagnosed 3 years but his personality changed then and only got worse over the years. It’s the not being able to do much we were going to go on a cruise on my 60th birthday which was Sunday but can’t face doing that with him it would be too stressful. All he does is criticise and complain nearly all day long. It makes me want to scream!

Dear @Guzelle - I am sorry you have had to put up with this for so long. The mother of someone I know went on a cruise with her husband when he was quite advanced and their son had thought it would be the wrong thing to do given the stage of his illness but it turned out that it went very well and they found because their fellow passengers were of a certain age group they were very sympathetic and helpful. They had a great time. However they were people who had been on a number of cruises before so they knew the routines of cruising. Also I believe he was probably reasonably normal in his eating habits, which is obviously very important in social situations with strangers!

Do hope you find something nice to do to mark your 60th.

 

[maryjoan]

I’d love 2 Weeks respite but he won’t agree to it. I took him to visit an old friend and she was asking about our daughter who is 32 weeks pregnant and he said he’s doesn’t want a baby in the house and is sick of hearing about it!

I could hit him he is so nasty and selfish if it isn’t about him he doesn’t want to know, He is taking risperidone Twice per day which keep him calm and much less aggressive but it doesn’t stop the selfishness.

If he did go into respite I don’t think I would want him back.

My goodness, I know just how you feel !

My youngest son has just become a Daddy for the first time - I am totally thrilled, and can't wait to see them all. I have a very much loved adopted daughter, who has two small children.

My OH keeps insisting on telling people that the latest new arrival is my first grandchild - technically, I suppose - but in fact my daughter, who does a lot for my OH, would be hurt and mortified if she heard him say that.....

 

[Guzelle]

That’s strange because my OH’s cousin is adopted and he’s never mentioned it until the dementia got worse. He used to upset his mum telling her that her son is not really hers and he himself is the only real relative she had. I kept telling him off saying he is her son she had brought him up from a baby and what you are saying is hurtful.

Banabarama I might look more into cruises, but he does seem to be sleeping a lot more now. He doesn’t like travelling a long way either.

 

[maryjoan]

I wonder how many of us have retreated to a very small circle of people we talk to now we are caring for our loved ones who have dementia?

I speak with the carer, 2 friends, and my 3 children, and my sister. That's 7 people - and that is all. I increasingly find myself feeling uncomfortable when I venture out into the big world. Yesterday, I spoke to a receptionist at the hospital face to face, and afterwards congratulated myself for doing it ! I felt out of place in Boots when I was looking for make up - I would rather order on line.... it is occuring to me, that this is not good ........

 

[marionq]

You should move to Glasgow. Everyone talks here - often too much. I can’t walk down the road without relative strangers asking how I am or how John is.

 

[canary]

I went out yesterday to the bank and while I was out I went to a cafe for coffee and felt very daring doing so. One of the people who worked there recognised me from work days (pre dementia). I looked at myself in the mirror afterwards and saw the worn jeans, unruly hair and no make-up. I felt a shadow of my former self and wondered how on earth she had recognised me.

@marionq - our village used to be like that, but there have been so many recent building developments around here that it is losing its community feel.

 

[lilypat]

@canary Oh I know that feeling of me guilt I have just remembered when I left my OH at his daughters while I did some pre Christmas shopping for a total of 2 hours ! I literally ran everywhere and then it hit me ....why was I doing that I was entitled to my space so I called into a cafe ordered a coffee ..but I just could not relax