And so it goes on...

[Grahamstown]

Enjoy your break @Grahamstown. Hope to see lots of lovely pictures again.
As for your husband's sister I think she was trying to be supportive, but I know how difficult it can be to get the right words.

This is very helpful and I think you may be right, she just doesn’t know what to do or say and find the right words, she isn’t very good at that. She also has lots of issues with her close family which make life difficult for her. This disease makes it tough for everyone, it’s not like bodily disease which you can understand, this loss of the mind is incomprehensible even when you live with someone with it.

 

[Grahamstown]

Al

I hope it does.

I think if you stay in the same area you are too near to get away emotionally or physically. If you go away you know there`s no way you can visit and in some respects this is good.

I hope you have a good holiday @Grahamstown and will be able to recharge your batteries.



I understand this feeling. It can`t be helped.

Always there with a kind word of understanding, thank you very much x

 

[DesperateofDevon]

@Grahamstown i hope you carry on doing lovely things each day all week, I look forward to the photos & hearing of your exploits. It’s difficult moving outside your comfort zone but I find talking to strangers easier than talking to those I know sometimes.
Wishing you lovely mini adventures & experiences on your break
x

 

[Grahamstown]

I have not gone away yet but packing up, haircut and then able to be free for the rest of the day without having to rush back, such a strange feeling. I also popped into the care home near the hairdresser’s to take a couple of items I had forgotten. I got a report, he was up and dressed having breakfast with two of the lady residents talking about golf! I knew he would benefit from the stay, being able to say his stuff several times a day and nobody else would bat an eyelid. He has packed up to go home which he did before and the staff had remembered that he did this so they unpacked, reassured him and said that he would settle down after a few days. I didn’t go to see him because then he would think he was going home. Our son will visit. So I can relax now knowing that on balance he is fine.

Once again I feel as if a weight is off my shoulders and I feel better already. The stresses and strains of arranging respite are worth it but we are lucky to be able to afford it and find a bed where he had been before.

 

[canary]

It sounds like he will be fine
Have a lovely time

 

[Grannie G]

Once again I feel as if a weight is off my shoulders and I feel better already.

The lifting of this weight is what it`s all about. You can relax now knowing your husband is happy and being well cared for in your absence.

Go away and enjoy yourself.

 

[Mudgee Joy]

Dear @Grahamstown - Hope you are really relaxing and have some very pleasant times on your break. In a way you are doing it for all of us !! Certainly for me - you give me heart.
I only think of respite as leaving my husband at home while I go away. I guess it’s a softer option for me - in a small town there is no holiday home out there - the three care homes we have are well known and my husband would feel betrayed in them - but perhaps I could look further afield .
Best wishes, Mudgee Joy

 

[DesperateofDevon]

Dear @Grahamstown - Hope you are really relaxing and have some very pleasant times on your break. In a way you are doing it for all of us !! Certainly for me - you give me heart.
I only think of respite as leaving my husband at home while I go away. I guess it’s a softer option for me - in a small town there is no holiday home out there - the three care homes we have are well known and my husband would feel betrayed in them - but perhaps I could look further afield .
Best wishes, Mudgee Joy

I’ve just got Mum a week respite at what looks like a five star resort near me
I shall be making the most of the facility’s if possible!!!

 

[Grahamstown]

Dear @Grahamstown - Hope you are really relaxing and have some very pleasant times on your break. In a way you are doing it for all of us !! Certainly for me - you give me heart.
I only think of respite as leaving my husband at home while I go away. I guess it’s a softer option for me - in a small town there is no holiday home out there - the three care homes we have are well known and my husband would feel betrayed in them - but perhaps I could look further afield .
Best wishes, Mudgee Joy

I would like to leave my husband at home but it would be very difficult. My daughter offered to come for my recent holiday but I felt that it was too much to ask of her, in spite of the fact that someone suggested that she might like to spend this time with her father. I brought him home yesterday and fortunately our daughter came over to see us, having dropped her own daughter and two friends off at a gig in our town. He had a good evening by his standards but after two weeks away I can see he has slipped down again all round. This morning is fine and sunny and I am heartbroken. Maybe it’s the reaction to the past few weeks with a bereavement which he is unable to comprehend, and his other sister who has lost her sister and now her brother. I think she made a bad mistake going against my wishes and going to see him in the care home on the day of the funeral and not waiting a couple of weeks and coming to see him here at home when we could have mourned for their sister openly. As it is the death was not mentioned and although they were very kind and considerate to him, to see him there, when it was mentioned how frightening they found such places, must have been grim. Will she ever see him again?

When things get really bad I listen to Four Last Songs by Richard Strauss. They are so profound that one can have a good cry and when they are over just carry on. I am listening to Jessye Norman today, who died recently aged 74 of sepsis, similar to my sister in law.

 

[DesperateofDevon]

I would like to leave my husband at home but it would be very difficult. My daughter offered to come for my recent holiday but I felt that it was too much to ask of her, in spite of the fact that someone suggested that she might like to spend this time with her father. I brought him home yesterday and fortunately our daughter came over to see us, having dropped her own daughter and two friends off at a gig in our town. He had a good evening by his standards but after two weeks away I can see he has slipped down again all round. This morning is fine and sunny and I am heartbroken. Maybe it’s the reaction to the past few weeks with a bereavement which he is unable to comprehend, and his other sister who has lost her sister and now her brother. I think she made a bad mistake going against my wishes and going to see him in the care home on the day of the funeral and not waiting a couple of weeks and coming to see him here at home when we could have mourned for their sister openly. As it is the death was not mentioned and although they were very kind and considerate to him, to see him there, when it was mentioned how frightening they found such places, must have been grim. Will she ever see him again?

When things get really bad I listen to Four Last Songs by Richard Strauss. They are so profound that one can have a good cry and when they are over just carry on. I am listening to Jessye Norman today, who died recently aged 74 of sepsis, similar to my sister in law.

music often reduces me to tears, the depth of emotions & words .... a momentary release

 

[Grahamstown]

music often reduces me to tears, the depth of emotions & words .... a momentary release

It worked, I felt a lot better when the songs ended. It’s been an up and a down day, bad this morning and afternoon, good this evening, he ate a bit and watched a whole episode of Midsomer Murders and even said, the housekeeper, and he was right. He has now lost another 2kgs in three weeks, and his skin is very fragile so I had a telephone consultation with the doctor, he went through his general health, confirmed that I could do no more and ordered some cream for his skin. It was a very valuable discussion and he asked a lot of important questions. He is simply fading away slowly.

 

[AliceA]

So sorry, I really feel for you.
I have taken to following the news headlines only. I am tired of differing opinions that are self serving and divisive. I also feel that my husband is disturbed by the news, I had to speak about costs in his hearing.
Last night he suddenly came up with the idea that if I had to buy anything I must charge it to our son in law. I said I didn't think that would really work.
Perhaps I should have said What a good idea!
We can't win them all, can we?

Perhaps we will watch a recorded programme in the afternoon but othwise I play CDs or Listen to Classic FM.
The peaceful time suits us now. Music brings back memories and soothes or releases emotion. We like chants so I have just bought a one I have listened to on my iPad.
Weight loss is an issue, so is dealing with infections wisely. It's a hard job to know what's best.

Xxx

 

[Grahamstown]

I am very worried about the weight loss but the talk with the doctor was reassuring because he confirmed that I was doing all I could and that he would certainly not be wanting to do any aggressive treatment, which I absolutely agree with. He will go on and on, losing weight and getting weaker and that’s the disease. So hard for us to watch helplessly. Your reply was a comfort @AliceA , and I couldn’t agree more about the news and also prefer radio or music, although I do watch tv in the evening with my husband on and off during his evening restlessness, the only exercise he gets now. I have asked for one more day of care at home because I am finding that a godsend. Do you know, if my husband had his way, he would drink copious amounts of tea and very little else? He finds eating tiring so I give him a lot of fluid foods but that’s not enough even with supplements. I have to be careful not to obsess over it.

 

[AliceA]

I am very worried about the weight loss but the talk with the doctor was reassuring because he confirmed that I was doing all I could and that he would certainly not be wanting to do any aggressive treatment, which I absolutely agree with. He will go on and on, losing weight and getting weaker and that’s the disease. So hard for us to watch helplessly. Your reply was a comfort @AliceA , and I couldn’t agree more about the news and also prefer radio or music, although I do watch tv in the evening with my husband on and off during his evening restlessness, the only exercise he gets now. I have asked for one more day of care at home because I am finding that a godsend. Do you know, if my husband had his way, he would drink copious amounts of tea and very little else? He finds eating tiring so I give him a lot of fluid foods but that’s not enough even with supplements. I have to be careful not to obsess over it.

I think we have to reach a positive acceptance otherwise we just become negative and that is catching. Xxx

 

[Duggies-girl]

@Grahamstown dad is losing weight again, slowly but surely. He has lost 5 pounds in the last 3 months even though he is eating quite well and it's not like he does a lot of exercise when he is asleep all day.

He also nearly fell over a couple of days ago as he is very wobbly. He had 3 falls in 3 weeks when he was in hospital so I think we have done well as he has been home 7 months now with just a couple of near misses.

Dad is declining and it is inevitable. One thing that never fails to shock me is how small dad has become. He used to be a tall upright man but since he has been using his frame he has become rather bent and I am sure that he is 6 inches shorter than he used to be. I think that if he stood up straight he would be shorter than me now.

You can only do so much and you are already doing your best.

 

[AliceA]

@Grahamstown dad is losing weight again, slowly but surely. He has lost 5 pounds in the last 3 months even though he is eating quite well and it's not like he does a lot of exercise when he is asleep all day.

He also nearly fell over a couple of days ago as he is very wobbly. He had 3 falls in 3 weeks when he was in hospital so I think we have done well as he has been home 7 months now with just a couple of near misses.

Dad is declining and it is inevitable. One thing that never fails to shock me is how small dad has become. He used to be a tall upright man but since he has been using his frame he has become rather bent and I am sure that he is 6 inches shorter than he used to be. I think that if he stood up straight he would be shorter than me now.

You can only do so much and you are already doing your best.

You are right, our very best is all we can offer, it takes all our energy. You have done well to keep your Dad so safe.
My husband seems to have two faces, one large and open, the other as it is today small and tired. He has slept a lot too. We at home can read the mood so much better than those on a busy hospital ward often can. Although some are brilliant, the constant change of staff can miss things that we notice.

 

[Grahamstown]

@Grahamstown dad is losing weight again, slowly but surely. He has lost 5 pounds in the last 3 months even though he is eating quite well and it's not like he does a lot of exercise when he is asleep all day.

He also nearly fell over a couple of days ago as he is very wobbly. He had 3 falls in 3 weeks when he was in hospital so I think we have done well as he has been home 7 months now with just a couple of near misses.

Dad is declining and it is inevitable. One thing that never fails to shock me is how small dad has become. He used to be a tall upright man but since he has been using his frame he has become rather bent and I am sure that he is 6 inches shorter than he used to be. I think that if he stood up straight he would be shorter than me now.

You can only do so much and you are already doing your best.

Your description of your Dad mirrors my husband exactly, but even I was shocked to see that he had lost 4 and a half lbs in three weeks. I know they tried really hard to get him to eat in the care home because my son and daughter were there and saw a lovely lady cajole him to eat but he started digging his heels in and refusing and now he is the same at home. The carers today and yesterday are having the same problem, however small the serving, he only eats half but little and often is the only way. Must stop worrying now.

 

[Grahamstown]

A combination of my husband looking at photographs of the grandchildren and trying to work out who they are and whose children they are, together with Bambi on the radio was enough to bring tears to my eyes. Bambino’s is one of my earliest recollections because my mother had to take me home after the death of Bambi’s mother. I was 3 I think. Didn’t think I would still be crying over Bambi at my age.

P.S. I know it’s not Bambi I am crying over but that music was the trigger. This severe memory loss is heartbreaking for us but it doesn’t seem to bother him.

 

[Linton]

The memory loss is one of the worst things... But I have to chuckle sometimes.. This morning our son was sitting with my OH while I looked after one of our grand children.. When I got home my son told me my OH had told him.. with a gleeful smile.. a lovely strange woman had given him a shower yesterday..(should have gone to specsavers)

 

[DesperateofDevon]

It worked, I felt a lot better when the songs ended. It’s been an up and a down day, bad this morning and afternoon, good this evening, he ate a bit and watched a whole episode of Midsomer Murders and even said, the housekeeper, and he was right. He has now lost another 2kgs in three weeks, and his skin is very fragile so I had a telephone consultation with the doctor, he went through his general health, confirmed that I could do no more and ordered some cream for his skin. It was a very valuable discussion and he asked a lot of important questions. He is simply fading away slowly.

it’s hard to watch, my love & virtual hugs to you both xxxxxx