What to say?
- Thread starter Rosalind
- Start date
I've not been on for about 18 months, since my husband with Vascular dementia went into a care home. He has never been happy there, Despite the fact that it is nice, and the staff lovely. His mental state has deteriorated, and he is constantly fretting about not being able to do his imaginary 'job' which is, apparently, collecting dead bodies from Salisbury Plain. He is also much exercised by the fact that he thinks the Chinese are buying up complete villages nearby, with sinister intent.
Recently he has been incredibly angry with the staff and me, becoming violent and striking carers. He is now in a special assessment unit, to see if they can come up with a mix of medication that calms him and makes him happier. He has caused problems there, attacking other patients, and somehow getting hold of a kettle of hot water and using this as a weapon. He was pretty heavily sedated when I went to see him yesterday. I took in postcards received from his son and grandson, and attempted to talk about them, but otherwise, how do other people cope with visits to people who are in as advanced a stage as this? I literally can think of nothing to say. I don't like to talk about home, as I think saying things like 'the drains got blocked' will make him worry, while 'The Moores came round for lunch on Sunday' seems a cruel reminder of a social life. Both these may be me assuming too much comprehension on his part. I recently took in a long printout of his son's blog, detailing a trip to Nepal, which is a place my husband knows well, but he refused to believe his son had been there, and was not interested in the pictures. Indeed said they were not really Nepal at all, despite there being temples, Himalayas etc visible.
How do others get through 30 minutes or more with someone who has lost the ability to communicate?
Recently he has been incredibly angry with the staff and me, becoming violent and striking carers. He is now in a special assessment unit, to see if they can come up with a mix of medication that calms him and makes him happier. He has caused problems there, attacking other patients, and somehow getting hold of a kettle of hot water and using this as a weapon. He was pretty heavily sedated when I went to see him yesterday. I took in postcards received from his son and grandson, and attempted to talk about them, but otherwise, how do other people cope with visits to people who are in as advanced a stage as this? I literally can think of nothing to say. I don't like to talk about home, as I think saying things like 'the drains got blocked' will make him worry, while 'The Moores came round for lunch on Sunday' seems a cruel reminder of a social life. Both these may be me assuming too much comprehension on his part. I recently took in a long printout of his son's blog, detailing a trip to Nepal, which is a place my husband knows well, but he refused to believe his son had been there, and was not interested in the pictures. Indeed said they were not really Nepal at all, despite there being temples, Himalayas etc visible.
How do others get through 30 minutes or more with someone who has lost the ability to communicate?
Hi Rosalind
It's never easy!
John lost his ability to communicate several years ago, because of the form of dementia he has. But he has never been aggressive, so it's swings and roundabouts!
I get round the visiting by going at meal times. This means I can feed him, which helps the staff. It also means that he's awake, he tends to sleep most of the time, though he's not sedated. So I talk to him about the meal, and the choices, though he doesn't reply.
Apart from that, I tend to just sit and hold his hand, tell him I love him, bits of family stories, which he doesn't follow. The staff always come over to speak, and that's good, because we can have a laugh, which sometimes makes John smile too.
I think the secret is not to worry to much. Just talk as if he can understand, and don't worry if you get no response. I believe John likes me being there, and the hand-holding. The rest doesn't really matter, so long as he knows I love him.
It's never easy!
John lost his ability to communicate several years ago, because of the form of dementia he has. But he has never been aggressive, so it's swings and roundabouts!
I get round the visiting by going at meal times. This means I can feed him, which helps the staff. It also means that he's awake, he tends to sleep most of the time, though he's not sedated. So I talk to him about the meal, and the choices, though he doesn't reply.
Apart from that, I tend to just sit and hold his hand, tell him I love him, bits of family stories, which he doesn't follow. The staff always come over to speak, and that's good, because we can have a laugh, which sometimes makes John smile too.
I think the secret is not to worry to much. Just talk as if he can understand, and don't worry if you get no response. I believe John likes me being there, and the hand-holding. The rest doesn't really matter, so long as he knows I love him.
Rosalind - welcome back! I have wondered how you were getting on. I don't have any words of advice I'm afraid. My only experience was with visiting in hospital and I never knew what to say then. I think it "might" be slightly easier if you're visiting a female - I used to brush my mother's hair and mosturise her hands and face (although that sounds a bit sexist now I think about it - I can definitely remember brushing my father's hair). Non verbal communication can take the place of talking but it does depend on the relationship and if the person is willing to accept it, which your husband may not be.
Dear Rosalind,
I've talked to several other wives whose husbands had been on an assessment ward for a long period of time and whose husband's behaviour and understanding is very similar to your description.
They found that they either had had to cut down visiting during the week and/or take a friend/relative with them for some of the visits. This helped them to cope with the strain.
You are going through a very hard time. Take care of yourself and remember that you also have needs.
xxTinaT
I've talked to several other wives whose husbands had been on an assessment ward for a long period of time and whose husband's behaviour and understanding is very similar to your description.
They found that they either had had to cut down visiting during the week and/or take a friend/relative with them for some of the visits. This helped them to cope with the strain.
You are going through a very hard time. Take care of yourself and remember that you also have needs.
xxTinaT
Thanks, folks.
I think I am going to a meeting with consultant etc on Monday. Having talked to my stepson, we both feel that Guy should be put on whatever happy pills there may be, regardless of how these may affect his body by becoming addictive etc. What could that matter? And if, during the monitoring he is on, they find any other physical problems these should not be dealt with via aggressive treatment, surgery etc, just palliative.
While I feel I have a duty to be his advocate, and feel desperately sorry for him, after a not very happy marriage I am finding this burden pretty bloody awful. Would that I could, as suggested, take his hand and say I love him but that prospect appals me, and anyway would not be truthful. He was cold towards me for years, but this might have been the beginning of his illness. Who can tell?
It really is a stinker
I think I am going to a meeting with consultant etc on Monday. Having talked to my stepson, we both feel that Guy should be put on whatever happy pills there may be, regardless of how these may affect his body by becoming addictive etc. What could that matter? And if, during the monitoring he is on, they find any other physical problems these should not be dealt with via aggressive treatment, surgery etc, just palliative.
While I feel I have a duty to be his advocate, and feel desperately sorry for him, after a not very happy marriage I am finding this burden pretty bloody awful. Would that I could, as suggested, take his hand and say I love him but that prospect appals me, and anyway would not be truthful. He was cold towards me for years, but this might have been the beginning of his illness. Who can tell?
It really is a stinker
Hello Rosalind
It is difficult enough caring for dementia from within a loving marriage. To care when there has been coldness would make it almost impossible.
Saying your husband has been cold towards you for years, implies it wasn`t always so, and indeed it could have been due to the onset of the condition. My husband`s behaviour changed towards me six years before diagnosis.
I just wanted you to know.
Take care. You can only do what feels right for you.
It is difficult enough caring for dementia from within a loving marriage. To care when there has been coldness would make it almost impossible.
Saying your husband has been cold towards you for years, implies it wasn`t always so, and indeed it could have been due to the onset of the condition. My husband`s behaviour changed towards me six years before diagnosis.
I just wanted you to know.
Take care. You can only do what feels right for you.
To break up the visit with someone who can't really communicate...like Hazel suggested meal times are good, another thing I used to do, is go for a walk or wheelchair push(and just comment on things that you go by), if the dementia sufferer can still drink unthickened fluids, making coffee or a tea passes the time (used to sit Dad down, say "How about I make you a cuppa? We can have a nice cup of coffee together...you look like you could do with a coffee, I know I do...blah, blah, blah (after a bit of practice you can get quite good at talking without getting a response and at the same time not appearing rude and uncaring)", go organise the putting the jug on etc...come back and check 'Are you comfortable in that chair? It does look really comfortable, I think I should have picked that one for me!"..go back to the jug, potter around..turn back to Dad "Don't worry I'll make sure you've got your three teaspoons of sugar, I know you like it that way"...carry on pottering around making the coffee, come back and sit down and tell him the coffee's ready just letting it cool a bit first "Why don't we just sit here and enjoy the peace and quiet for bit while we wait?" Sit quietly for a while, just holding hands...and so on and so forth...you can do this kind of prattle quite easily after a while. I hardly ever used to bring up mine or his old home life...talk about things you see in the home, comment on how well so and so is looking, notice the new magazines, or furniture, speculate on what activities have been happening in the home...
I know it sounds like this conversation asks a lot of questions which can be problematic when dealing with someone who can't answer back, but after a while you get good at asking questions without sounding like you need a response, or by answering the questions yourself. Eg. "I heard that they had a church group come in and sing? That would have been nice...so long as they were in tune! I hope you got to see them, I will ask the nurses to make sure you do next time if you didn't this time. I'm sure you'll let us know if you don't want to hear them sing, they can be awfully loud sometimes can't they?"
I promise you, it does get easier...some days depending on their mood, just being there being quiet is all they want of you...this is something else you get good at, sensing when your behaviour is annoying, upsetting or tiring them and changing it accordingly.
I used to spend an hour a day, visiting Dad who couldn't communicate, when I first started I used to wonder how the heck I would fill that hour, but that is also something I did that may help...I used to initially force myself to stay for an hour...if you don't give yourself an option, you start to find ways to fill it and make the time pass as fast as possible. Of course if it is too hard for you to force yourself to do anything just now, go easy on yourself...but if you can handle it, it does make you plan out your visits, so that the time can pass. My god did I want that time to pass!!!
Possible activities:
* A walk, time passes quite well as you let them wander about, looking at whatever interests them, going into public areas and wandering about commenting on what is seen, what is different/new, etc.
* A coffee or tea break - the preparation, the waiting for jug to boil, waiting for tea to cool etc also passes the time. If they can eat biscuits or fruit, something else to pass the time and comment on.
* Sitting in front of a tv if they are interested in watching it - holding hands and just commenting every now and then about what is on.
* Meal times - Preparing for the meal to be served, feeding the person each course, going and finding out when the next course is to be served or going and getting it yourself..all passes time.
* Sitting down somewhere where you can see people going by, or cars on the street, or comment on how wonderful the breeze is, how nice the garden looks etc.
* If they don't object, some kind of care routine, moisturising (something I never thought my rough tough Dad would put up with) became a regular activity as his skin would get quite dry and scaley in the home. Other suggestions - going through their clothes and discussing whether they need new stuff, putting up new photos, tidying the room, etc.
* Just being there - quiet times are good too. Sometimes they are just happy to sit and stare into space.
Lastly timing can be everything. For example I wouldn't get to the home just when dinner started or we'd be all done in 20 mins and I'd still have 40mins to fill.
If I'd get there 20mins before dinner, then a bit of a walk, then 'oh we'd better go get ready for dinner' and before you knew it 20mins was gone, then 20 mins for dinner, then 20mins of watching tv or moving to another area to relax.
Hope some of this might help make you feel more calm about visits.
Take care,
I know it sounds like this conversation asks a lot of questions which can be problematic when dealing with someone who can't answer back, but after a while you get good at asking questions without sounding like you need a response, or by answering the questions yourself. Eg. "I heard that they had a church group come in and sing? That would have been nice...so long as they were in tune! I hope you got to see them, I will ask the nurses to make sure you do next time if you didn't this time. I'm sure you'll let us know if you don't want to hear them sing, they can be awfully loud sometimes can't they?"
I promise you, it does get easier...some days depending on their mood, just being there being quiet is all they want of you...this is something else you get good at, sensing when your behaviour is annoying, upsetting or tiring them and changing it accordingly.
I used to spend an hour a day, visiting Dad who couldn't communicate, when I first started I used to wonder how the heck I would fill that hour, but that is also something I did that may help...I used to initially force myself to stay for an hour...if you don't give yourself an option, you start to find ways to fill it and make the time pass as fast as possible. Of course if it is too hard for you to force yourself to do anything just now, go easy on yourself...but if you can handle it, it does make you plan out your visits, so that the time can pass. My god did I want that time to pass!!!
Possible activities:
* A walk, time passes quite well as you let them wander about, looking at whatever interests them, going into public areas and wandering about commenting on what is seen, what is different/new, etc.
* A coffee or tea break - the preparation, the waiting for jug to boil, waiting for tea to cool etc also passes the time. If they can eat biscuits or fruit, something else to pass the time and comment on.
* Sitting in front of a tv if they are interested in watching it - holding hands and just commenting every now and then about what is on.
* Meal times - Preparing for the meal to be served, feeding the person each course, going and finding out when the next course is to be served or going and getting it yourself..all passes time.
* Sitting down somewhere where you can see people going by, or cars on the street, or comment on how wonderful the breeze is, how nice the garden looks etc.
* If they don't object, some kind of care routine, moisturising (something I never thought my rough tough Dad would put up with) became a regular activity as his skin would get quite dry and scaley in the home. Other suggestions - going through their clothes and discussing whether they need new stuff, putting up new photos, tidying the room, etc.
* Just being there - quiet times are good too. Sometimes they are just happy to sit and stare into space.
Lastly timing can be everything. For example I wouldn't get to the home just when dinner started or we'd be all done in 20 mins and I'd still have 40mins to fill.
If I'd get there 20mins before dinner, then a bit of a walk, then 'oh we'd better go get ready for dinner' and before you knew it 20mins was gone, then 20 mins for dinner, then 20mins of watching tv or moving to another area to relax. Hope some of this might help make you feel more calm about visits.
Take care,
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Rosalind - I think you have to just do what you feel you can do. From what you have said in the past this has been a less than ideal relationship and there is absolute no point in pretending that only nice people get this damn disease. Because of that every visit is probably going to be a strain and I'm not sure you can get over that. I would concentrate on the practical aspects - sorting out laundry, ensuring his records are up to date, etc. Are you sure that you're not visiting more often than you would like because you feel you should do? While you might get brownie points with the staff, and I think you're correct that you need to be his advocate, you have to do what you need to do for you, rather than conforming for the sake of it.
Love
Love
I don't know if this would work. haven't got to that stage yet, we are still at the stage where my mother has 3 or 4 topics of conversation and we just go round and round and round saying the same things, boring but easy !
Anyway I thought I might try reading to her when she can't communicate, anyone had any luck with this ?
Anyway I thought I might try reading to her when she can't communicate, anyone had any luck with this ?
Well I tried this with my mother after she had her stroke. I really thought it would be successful for lots of reasons 1) she always read a lot 2) she always enjoyed books on tape 3) I have a pleasant reading voice D). Unfortunately even when I tried books that she probably knew by heart it just made her restless. Your mileage may vary.
D). Unfortunately even when I tried books that she probably knew by heart it just made her restless. Your mileage may vary.Hia Rosalind. i often feel the same about my Dad. I had a lot of unresolved anger about the past when he started to get ill and now it is too late really to address any of it with him. I see that he is a different person now from the one i was upset so i try to treat him as such. He is just a frail old man now.
The days where he doesn't want to speak are tricky. Sometimes i try to get him to sit in the communal day room where other ppl are talking and he just listens and watches. Sometimes i take some photographs which he looks at and might smile at one or two. Sometimes i just sit and look out of the window with him and hold his hand. Some days i grit my teeth and try not to look at my watch!! LOL I reckon my physical presence is as good as anything and maybe we try to fill in the time for ourselves more than the person we are with. Be kind to yourself ..you sound like you are doing your best xx
The days where he doesn't want to speak are tricky. Sometimes i try to get him to sit in the communal day room where other ppl are talking and he just listens and watches. Sometimes i take some photographs which he looks at and might smile at one or two. Sometimes i just sit and look out of the window with him and hold his hand. Some days i grit my teeth and try not to look at my watch!! LOL I reckon my physical presence is as good as anything and maybe we try to fill in the time for ourselves more than the person we are with. Be kind to yourself ..you sound like you are doing your best xx
