And so it goes on...

[Duggies-girl]

my feelings towards what’s eaten now are 1-does it bring pleasure? 2- taste good?
3- does it really matter at this late stage?

how sad is that?
X

Oh dear I get 3 or 4 high calorie chocolate mousses down dad most days and every time they are a complete surprise to him, like he has never had one before. I ask him if he would like a chocolate mousse and he says he will try one. In the 30 seconds that it takes me to go and get one he has forgotten that I asked and it is another complete surprise. 'Ooh I didn't know you was getting that for me' and 'I will try to eat it all but there is a lot there' There isn't, it's tiny and he always eats it followed by lots of burping.

High calorie deserts are not easy to find. I used to get him the tiny little GU chocolate ganaches as they had 300 calories a pot but they have been discontinued which is a bit annoying but I have since found suitable substitutes. I have even put a bit of cream on top at times. We get through an incredible amount of cream but I don't worry about high cholesterol any more for dad.

 

[Grahamstown]

my feelings towards what’s eaten now are 1-does it bring pleasure? 2- taste good?
3- does it really matter at this late stage?

how sad is that?
X

1- he doesn’t seem to derive any pleasure from eating, 2- he says it tastes good or not but only if I ask him, 3- no I don’t think it does. Occasionally I asked him if he wants to slowly starve and he says no, probably meaningless so I stopped asking. Finally he is taking the protein extra which comes in 40ml doses and he can drink it easily because it is a small amount. It’s a holding operation now as the disease does it’s damage. But I look after him and although I hate what the disease is doing to ravage his body and mind I wouldn’t do anything else as long as he is still able to be at home. Time will tell.

Oh dear I get 3 or 4 high calorie chocolate mousses down dad most days and every time they are a complete surprise to him, like he has never had one before. I ask him if he would like a chocolate mousse and he says he will try one. In the 30 seconds that it takes me to go and get one he has forgotten that I asked and it is another complete surprise. 'Ooh I didn't know you was getting that for me' and 'I will try to eat it all but there is a lot there' There isn't, it's tiny and he always eats it followed by lots of burping.

High calorie deserts are not easy to find. I used to get him the tiny little GU chocolate ganaches as they had 300 calories a pot but they have been discontinued which is a bit annoying but I have since found suitable substitutes. I have even put a bit of cream on top at times. We get through an incredible amount of cream but I don't worry about high cholesterol any more for dad.

Oh yes I am the same but he rarely seems very interested and I think it’s because his taste buds have gone and that and smell went a couple of years ago. The high protein shot of 40mls is 160 cal. and I try to get him to drink three a day, plus a fortisip, 780 in total plus all the cream, butter in soups etc. I think I have stopped the severe weight loss now but that’s not saying much. I have been giving him mince pies, too big he says and have changed to the mini ones because he will eat one with cream or custard without complaining. I do have to feed him sometimes to get him started. Today I mashed up half an avocado with salt and sugar on toast and butter and that worked.

 

[AliceA]

Just to say I am thinking of you. It is difficult with this feeding, do you buy the protein drinks?
I have whey powder in stock, it is a bit sweet but then sweet things appeal.

 

[Grahamstown]

Just to say I am thinking of you. It is difficult with this feeding, do you buy the protein drinks?
I have whey powder in stock, it is a bit sweet but then sweet things appeal.

Thanks @AliceA it’s hard, this feeding, and I just plod on as best I can. Thinking of you too.

 

[Grahamstown]

A sad day today when old friends we see from time to time came at the time he is up and more awake than usual and he hardly said a word and sat hunched up with his eyes closed breathing heavily. I realised that it is probably no longer a good idea for visitors to come although I have tried to keep life as normal as possible. I had told him they were coming and he said he didn’t want them to come and when I asked him to try and say why he had difficulty. Finally I got an answer to various questions and it is because he can’t chat and gets tired and feels he has to entertain but can’t. This was conveyed by a series of questions about how he felt. It’s beginning to be a bit too much to ask of him when people try to make it a normal social occasion. He wouldn’t eat anything and hardly drank either and thought the elderflower fizz they brought was water, so sad. The weight loss and anorexia is getting quite serious now and it’s slow torture so I am feeling very low this evening.

 

[charlie10]

so sorry @Grahamstown.....it must be so hard to watch him struggle. My thoughts are with you x

 

[Grannie G]

so I am feeling very low this evening.

I`m so sorry @Grahamstown

It`s very hard to see our dear people with dementia through the eyes of others.

We know they are failing but somehow grow with it even though it`s such a worry and so upsetting.

Others who haven`t seen them for a while and can`t hide the look of shock from their faces, somehow bring home to us just how big a change there is.

 

[Duggies-girl]

I am sorry too @Grahamstown That is very sad. Dad still communicates well to any visitor (although there are not many) but he still has an old school friend. Can you believe these two men who were born in 1930 and went to school together through the war are still best friends after all this time. They lived near the airport where the spitfires took off and they talk for a while about their adventures and it is amazing because dad really comes to life and he remembers his childhood like yesterday. The friend is very with it and knows how bad dad is but he still turns up for a chat once a week or so. I am so grateful to him.

I hope you don't get too isolated @Grahamstown you need a bit of company as well. You count too and it is too easy to put our husbands and dads first all of the time because they are the one's suffering the disease. It's not fair really.

 

[DesperateofDevon]

A sad day today when old friends we see from time to time came at the time he is up and more awake than usual and he hardly said a word and sat hunched up with his eyes closed breathing heavily. I realised that it is probably no longer a good idea for visitors to come although I have tried to keep life as normal as possible. I had told him they were coming and he said he didn’t want them to come and when I asked him to try and say why he had difficulty. Finally I got an answer to various questions and it is because he can’t chat and gets tired and feels he has to entertain but can’t. This was conveyed by a series of questions about how he felt. It’s beginning to be a bit too much to ask of him when people try to make it a normal social occasion. He wouldn’t eat anything and hardly drank either and thought the elderflower fizz they brought was water, so sad. The weight loss and anorexia is getting quite serious now and it’s slow torture so I am feeling very low this evening.

I am sorry, but I do understand. Dads food & liquid intake is so low I can’t comprehend how he is surviving.
It’s a heartbreaking situation & I appreciate that it tears you apart.

but you need the support & stimulation social interaction provides, otherwise you will become isolated. It’s problematic, but your needs are just as important. I’m afraid it’s a case of do as I say & not as I do!!!!

I feel totally isolated & if I didn’t have a support worker , daughter & OH I dread to think what my social interaction would be outside of the occasional art & craft event.

Dementias progress is inevitable & accepting this is one of the most difficult things. Balancing life becomes impossible, it’s easier to retreat & wave the flag of truce & say I give up all normality. Add to that your emotional distress & love for your PWD- well let’s just say that feeling low doesn’t always describe the experience.

sending love & hugs xxx

 

[jenniferjean]

The weight loss and anorexia is getting quite serious now and it’s slow torture so I am feeling very low this evening.

Sending hugs

 

[Grahamstown]

After feeling that I shouldn’t entertain anyone ever again and thinking that I should cancel old friends visit next week for my 80th birthday, your thoughts have sustained me and I shall go ahead. I was actually looking forward to it until last night. He did get up and greet them but that’s all he could manage. I was so shocked by the figure he cut that I completely forgot that our neighbour’s 6 year old son came round with a bowl of hot pumpkin soup for him. When everyone had left he drank a cup without complaining. This little boy aroused more interest in my husband than anything else. He pointed to him to sit next to him, smiled and held out his hand to shake and subsided again when he left. Just shows you how you can screen out the good and concentrate on the bad. So letting out your worst feelings on TP does help and you get good advice and of course you are all right, I must keep life going however hard it is, otherwise I will get isolated. I have also reflected on the fact that the husband last night doesn’t really want to see my husband’s deterioration but his wife is trying to ‘educate’ him, he is very fearful of illness anyway and trying to keep old age at bay at 79, still playing tennis. Oh the complexity of people!

His sister has written to apologise for ‘the way you have been treated’ and is trying to maintain contact. I feel very conflicted about this but have sent a conciliatory message. I simply don’t want to talk to her any more, what purpose would it serve unless she reconsiders her decision not to see her brother again? I guess that what I am trying to say in all this is that I am tired of having to facilitate everything, tired of always being grateful, I can barely keep us going without having to take care of everybody else’s needs, which is what it feels like at times. Everyone wants to help but they can’t do that unless I organise it and I am so tired emotionally and psychologically, even though I am physically well.

I also had a care management issue yesterday morning which brought me close to tears so I feel as if I am educating the care people as well. I did that in my working life in the NHS and seem to have picked up where I left off. The ladies are lovely and caring but the management is poor so they are not supported as they should be. The manager is coming to see me today to discuss it and she seems willing. It’s the same old story, illness, holidays, juggling staff and poor communications even in this day of smart phones. The staff all have to sign in and out on their phones but can’t be given basic information to help them in their work. Fond thoughts everyone.
Oh dear, this does sound like a big whinge, but I think you can here

 

[charlie10]

you sound exhausted @Grahamstown......telling you to 'look after yourself' is meaningless unless you have the support to do it......but I am thinking of you and everyone else who is on this heart-breaking treadmill, and sending hugs from overseas xx

 

[AliceA]

It sounds so familiar, I am often in the position of supporting the carer, they are mostly lovely but overworked and certainly underpaid. I do care about them itis a hard job. Our main one with a 6 yearold is having to work over Christmas as a normal day, of course the work is needed and essential as some are bedbound.
On the otherhand they can be the main social interaction we get.
But that does not help us when we have been up at night as well as on call all day. The regular ones are fine but new to us ones seldom seem prepared so I too had to monitor and think easier to do myself! I don't though but end up more tired.
Try and take care of yourself, hard I know. Xxx

 

[Grahamstown]

After the difficulties of last week, the usual carers have returned. I realise that keeping things on an even keel means that any little added thing makes life hard. Today two sad events happened. I helped him to cast his vote and that revealed further memory loss, his year of birth, and he said that he could hardly write but did a recognisable scrawl of his signature and chose a candidate and he made a quavering cross in the box, quite an achievement for him but what decline! I finally showed him the slideshow of his sister’s life which was shown at the funeral. He kept on saying how lovely she is and exclaiming about his dear sisters. The photos acted as a trigger for his earlier memories. He finally seemed to take in that she had died and I felt so sad that his family had come to this. If only the other sister could understand how much just to see her would mean. Terrible disease to rob you of your own meaning. So that’s a good example of the progress of the disease from reasonable life to total dependence in two years. I also did decide that it was unfair to have the dinner party and to expose his condition and have got an evening sitter. We shall go to the restaurant for a meal instead and our friends will come for a more suitable visit later on, short with some TV, not too much chat.

 

[DesperateofDevon]

After the difficulties of last week, the usual carers have returned. I realise that keeping things on an even keel means that any little added thing makes life hard. Today two sad events happened. I helped him to cast his vote and that revealed further memory loss, his year of birth, and he said that he could hardly write but did a recognisable scrawl of his signature and chose a candidate and he made a quavering cross in the box, quite an achievement for him but what decline! I finally showed him the slideshow of his sister’s life which was shown at the funeral. He kept on saying how lovely she is and exclaiming about his dear sisters. The photos acted as a trigger for his earlier memories. He finally seemed to take in that she had died and I felt so sad that his family had come to this. If only the other sister could understand how much just to see her would mean. Terrible disease to rob you of your own meaning. So that’s a good example of the progress of the disease from reasonable life to total dependence in two years. I also did decide that it was unfair to have the dinner party and to expose his condition and have got an evening sitter. We shall go to the restaurant for a meal instead and our friends will come for a more suitable visit later on, short with some TV, not too much chat.

I’m pleased you are going out for a meal, much better idea. Please enjoy yourself & have a glass of bubbles & toast the amazing you from me! xxx

 

[Grahamstown]

I’m pleased you are going out for a meal, much better idea. Please enjoy yourself & have a glass of bubbles & toast the amazing you from me! xxx

Thanks so much and I did enjoy it. Three of us had a birthday and they are old friends, his golf mates. I did have a glass of bubbles to celebrate my 80th, which I can’t quite believe and it was bittersweet, so much pain to be without him but impossible with him. He was fine with a familiar carer and so it all ended well. The friends will come to see him separately, much for the best. I misjudged the invitation but three weeks is a long time nowadays and there is a change for the worse. Good night dear friend.

 

[DesperateofDevon]

It’s not misjudging it it’s just dementia & it’s nuances. I admire you so much for your resilience.
x

 

[AliceA]

Well done on your 80th, yes it does seem impossible doesn't that the years have flow by.
I certainly do not feel in my eighties in spirit, even though my body creaks and has slowed down.
I do tell people my age when trying to get help for my husband. They often imagine I am fit and healthy.
Good luck with your possible travels. Think, now 80 you will get an extra 25p to splurge!

 

[Grannie G]

Happy 80th @Grahamstown

I`m glad you managed some celebration even if it was bitter sweet. We have to take what we can.

 

[Izzy]

Happy 80th @Grahamstown. I'm glad you had a nice meal.