It feels so bleak

[Grahamstown]

I too am using the clock app on iPhone on the sleep pattern mode and I usually get 7 hours. I sometimes wake in the early hours which is fatal for a good night but I still try to get up at the same time. Good luck with your efforts because a good nights sleep is vital for us carers.

 

[AliceA]

Well just been hung by my my own petard! I was unable to settle until getting on for 12.
There was sport on TV and I did not have the heart to disturb my love.
My hip was playing up, too much activity with the builders about during the day. They are back later.

Door opened with bang before three. I said I am not awake yet! My beloved retorted well I am!
Then main lights went on, I said come off it it is not three yet. I did get a a sorry, several coughs and a few snores as he nearly dropped off.
By then I was fully disturbed but oh so tired. About 4.00 I reluctantly admitted I was awake. So by five he is shaved and having breakfast. I have just had a coffee and a ginger biscuit to help wake me more and settle a slight queasiness.

The trigger was the offer to be taken out in a car to deliver prizes, have a coffee and the inevitable cake as one prize was going to owner of tea room. Then on to the shop Dunelm. This is of no interest as there is nothing I want or need. The trip is tempting as we have no car or pulblic transport. It had to an early start as the driver had to get home late morning.
My love does not always function until very late, but the thought of cake and it is a different matter!

At breakfast I said I could not function like this. The look back clearly thought I had a problem!

So full of yawns I think I best get showered, dressed and ready for what will be a long day. I know he will make up his sleep. I have the builders in to finish off before. Another comes on Monday.
As my father would have said No peace for the wicked! Not that I have the energy to be wicked!

 

[Grahamstown]

Oh dear @AliceA I don’t think I could function like that. No app could help in that situation. At home we have adjoining bedrooms but on holiday for a few days last week I had the same experience when we shared the room. I felt awful and had to rest during the day to catch up and function, quite unprecedented for me. You have my sympathy.

 

[AliceA]

Oh dear @AliceA I don’t think I could function like that. No app could help in that situation. At home we have adjoining bedrooms but on holiday for a few days last week I had the same experience when we shared the room. I felt awful and had to rest during the day to catch up and function, quite unprecedented for me. You have my sympathy.

I do sleep in an adjoining room in a recliner, this is because I am having radio therapy for an Oesophageal condition. I need to ensure I do not slip down. I find that even in an adjustable bed I can slip a bit.
So when he got up he came to sit in his chair next to me! Banging the door and putting main light on.
I woke with a start.
I cope with lack of empathy most of the time but this is the physical outcome. I feel quite shaky with lack of sleep. We have the builder coming this morning today. It never rains but it pours!
The good thing is that my daughter is going to take him with her so I shall have a couple of hours to rest as much as I can with the builder here.
I was interested in what you said about a holiday, sharing a room brings its own problems. I have been told I need respite but although I never thought I would have to say this sharing is a problem. Thanks so much for answering, others off forum think it a bit of a joke! Xxx

 

[Grahamstown]

@AliceA where dementia is concerned, nothing is a joke. I send you my best thoughts and hugs for your very difficult situation. The only thing is that today the sun is shining and it’s a new day for our partners who can’t remember yesterday xx

 

[Lindy50]

I do sleep in an adjoining room in a recliner, this is because I am having radio therapy for an Oesophageal condition. I need to ensure I do not slip down. I find that even in an adjustable bed I can slip a bit.
So when he got up he came to sit in his chair next to me! Banging the door and putting main light on.
I woke with a start.
I cope with lack of empathy most of the time but this is the physical outcome. I feel quite shaky with lack of sleep. We have the builder coming this morning today. It never rains but it pours!
The good thing is that my daughter is going to take him with her so I shall have a couple of hours to rest as much as I can with the builder here.
I was interested in what you said about a holiday, sharing a room brings its own problems. I have been told I need respite but although I never thought I would have to say this sharing is a problem. Thanks so much for answering, others off forum think it a bit of a joke! Xxx

A joke, @AliceA ??? How exactly? Unless I've entirely lost any sense of humour, I can't see how your situation could be regarded as a joke! It sounds to me as if you do need some respite, even if you wish you didn't.....
I hope you get a bit of peace while your daughter takes OH out, and a better night tonight.
Sending you (((hugs))).
Love
Lindy xx

 

[canary]

No, its no joke at all @AliceA
I find the lack of empathy hard too - everything is only ever about him. Today he asked me how I was, but it wasnt from concern for me - it was because he wanted reassurance that I would be able to look after him
Many PWDs can still respond to body language (my mum with Alz could until almost the end), but OH has no awareness of it at all. He is emotionally flat (though he still does anger very well!) and there is no longer any emotional connectiveness. Its like sharing my life with a psychopath

When you are not well it always seems so much worse. I do hope that you can get a bit of sleep today.

 

[AliceA]

No, its no joke at all @AliceA
I find the lack of empathy hard too - everything is only ever about him. Today he asked me how I was, but it wasnt from concern for me - it was because he wanted reassurance that I would be able to look after him
Many PWDs can still respond to body language (my mum with Alz could until almost the end), but OH has no awareness of it at all. He is emotionally flat (though he still does anger very well!) and there is no longer any emotional connectiveness. Its like sharing my life with a psychopath

When you are not well it always seems so much worse. I do hope that you can get a bit of sleep today.

I have just had a chat on helpline as I needed some information. Empathy goes very quickly with VD, also very lucid days that fools the occasional caller! Just my day! Just heard from hospital about a virtual colonoscopy for me! Roll next week I hope it will be better. ❤️ You are getting a double whammy aren't you. I often think when people say I love you some are really saying do you love me!

 

[AliceA]

A joke, @AliceA ??? How exactly? Unless I've entirely lost any sense of humour, I can't see how your situation could be regarded as a joke! It sounds to me as if you do need some respite, even if you wish you didn't.....
I hope you get a bit of peace while your daughter takes OH out, and a better night tonight.
Sending you (((hugs))).
Love
Lindy xx

Thanks, Lindy, just had a good chat on helpline. Some sound practical advice, comforting too. It was good to talk without someone hearing. Just the quiet and being off duty helps so much. Xxx

 

[canary]

Whats a virtual colonoscopy @AliceA ?

 

[marionq]

Whats a virtual colonoscopy @AliceA ?

If it doesn't involve drinking litres of laxative then I vote for it !

 

[AliceA]

Whats a virtual colonoscopy @AliceA ?

Not so virtual unfortunately! The appointment came out of the blue with three bottles of dye/laxative and a low fibre diet. Gas is pumped into the bowel and an injection given. The latter could cause an eye problem so A&E in an emergency. Then the CT scan in various positions, not sure what exactly. Have to expect cramps etc afterwards. I did report problems to GP, she said she would write to the consultant who I see for radiotherapy ablation for advice. This is the result, I am seeing the consultant for a treatment before this procedure to will ask more. This is the difficulty we Carers face, isn't it. Our own health get neglected. I am now in my eighties so health needs do get complicated.
Xxx

 

[AliceA]

If it doesn't involve drinking litres of laxative then I vote for it !

Ha, ha, ha! Not that virtual!

 

[Lindy50]

Not so virtual unfortunately! The appointment came out of the blue with three bottles of dye/laxative and a low fibre diet. Gas is pumped into the bowel and an injection given. The latter could cause an eye problem so A&E in an emergency. Then the CT scan in various positions, not sure what exactly. Have to expect cramps etc afterwards. I did report problems to GP, she said she would write to the consultant who I see for radiotherapy ablation for advice. This is the result, I am seeing the consultant for a treatment before this procedure to will ask more. This is the difficulty we Carers face, isn't it. Our own health get neglected. I am now in my eighties so health needs do get complicated.
Xxx

Eew, doesn't sound too pleasant! Still, I'm really pleased you're attending to some health needs of your own, which, as you say, we so often neglect .....
Also glad you found the helpline and a bit of peace and quiet helpful
Sending more (((hugs)))
Lindy xx

 

[Sad Staffs]

Gosh @AliceA ... so much going on for you.... don’t know where to start, other than to say I’m thinking about you with all your trials, tribulations and health problems, and I really hope you get some rest.
Love B xx

 

[Sad Staffs]

Well, went to M&S today to buy my husband some trousers for use around the house as he has lost so much weight, and to get him some new slippers for his upcoming Hospital stay.
He found fault with absolutely everything, he didn’t like the colour, thought the material was wrong, then he lost his temper with me, started shouting using the f word, sales lady was standing behind him and her face was a picture. I had enough embarrassment, told him to wait in the car.... So I bought him some jumpers, yes I know, he didn’t need jumpers, and we came home!
We are now back home and I’m sitting here trying to work out how to handle situations better where he loses his temper, starts shouting and swearing at me, or at others, and where I’m embarrassed and upset, and we are in the middle of a large store.
When we did leave someone wanted our parking space. She made the mistake of papping her horn to attract my attention, and trying to get me to move a bit quicker! My husband was out of the car like a shot, ready for a row ... luckily I managed to get him back before it became too vocal or physical.
Oh the joys of everyday life xx

 

[AliceA]

Well, went to M&S today to buy my husband some trousers for use around the house as he has lost so much weight, and to get him some new slippers for his upcoming Hospital stay.
He found fault with absolutely everything, he didn’t like the colour, thought the material was wrong, then he lost his temper with me, started shouting using the f word, sales lady was standing behind him and her face was a picture. I had enough embarrassment, told him to wait in the car.... So I bought him some jumpers, yes I know, he didn’t need jumpers, and we came home!
We are now back home and I’m sitting here trying to work out how to handle situations better where he loses his temper, starts shouting and swearing at me, or at others, and where I’m embarrassed and upset, and we are in the middle of a large store.
When we did leave someone wanted our parking space. She made the mistake of papping her horn to attract my attention, and trying to get me to move a bit quicker! My husband was out of the car like a shot, ready for a row ... luckily I managed to get him back before it became too vocal or physical.
Oh the joys of everyday life xx

Oh, poor B, you almost need cards to hand out! But that would upset him too.
We went away with friends, being less secure the husband's Tourette Syndrome rent havoc, every other word was a four lettered one. He also complained about every little thing justified or not. I do not think I had ever realised the stress his wife went through. He was not so bad at home although pretty bad some times. It was a super hotel and the staff were so well trained, but he always referred to it as that terrible holiday we shared, never again he said. I agreed! A hug backxxx

 

[AliceA]

Gosh @AliceA ... so much going on for you.... don’t know where to start, other than to say I’m thinking about you with all your trials, tribulations and health problems, and I really hope you get some rest.
Love B xx

Eew, doesn't sound too pleasant! Still, I'm really pleased you're attending to some health needs of your own, which, as you say, we so often neglect .....
Also glad you found the helpline and a bit of peace and quiet helpful
Sending more (((hugs)))
Lindy xx

Thanks for the hugs, I am feeling better, my body seemed to be racing earlier. More settled now.

 

[Sad Staffs]

No @AliceA , he wouldn’t be happy handing cards out! The nice lady from Alzheimer’s society visited us yesterday. She tried to persuade us to start using a white board. I made the mistake of trying to talk about using one in the kitchen. NO... not having it... WON’T have one. He was very adamant.
I should have just got one, put it up, and waited to see if he noticed!
Living and learning every day.
I guess I’m never too old to learn, or am I!!
Love B xx

 

[canary]

he wouldn’t be happy handing cards out!

You might be able to pass one out discretely behind his back without him seeing, though.

The appointment came out of the blue with three bottles of dye/laxative and a low fibre diet. Gas is pumped into the bowel and an injection given.

In what respect could that be considered virtual?!!!