"Dementia is easy to say and easy to write but not so easy to understand"
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Slowly, steadily so many small changes occur. Sometimes not for weeks or even months. When they do the event might well come as a bit of a shock. How do you deal with it? How do you accept these changes as 'normal' so the person you are caring for does not become more confused or frustrated or depressed? If you need someone to talk to for help or reassurance then simply send a message. It doesn't have to be long - I know you won't have time for 'long' but don't worry, I've been there, my good friends have been there and we will help you if we can.
Several weeks ago F improved tremendously. He was almost like his old self for a week or so and my hopes were raised. This last week he's gone back not just to how he was before but worse. We had a conversation, of sorts, one evening and he says he can't understand speech very well. Written words he can still understand - so soon I may have to communicate by writing. It seems he is hearing the sounds but his brain isn't converting them quickly or properly into anything intelligible. It is all so sad for a man who was a brilliant physicist, to see him like this and know it can only get worse.
It was pointed out to me recently that at the table he watched what I did before he started eating and this was particularly apparent today. He didn't know which cutlery to use. His eating has deteriorated and he spills lots of food. During the meal he got up, gathered his trousers with the spill in it and walked into the kitchen There he stood by the sink and brushed it all onto the floor. It was like a stab in the heart. Later I swept up the floor, one doesn't say anything, he can't help it.
Each step downwards has to be accepted with a heavy heart and accommodation. You have to learn to go round the difficulties until sometime in the future when they get too much. There is only so much one person can cope with and I hope I can recognise the time when I need physical help. Being very independent this might be difficult but maybe my friends will tell me.
The psychologist said it is common for the level of loss to change from time to time but I must say it is very destabilising. You just get used to one level and blow me there's an improvement and it reminds you just what you are loosing. Then it all goes downhill and you are again reminded of your loss.
F was always my rock as well as husband, lover, confidant and provider. A good cousin in Australia helped me no end by telling me that although my rock was crumbling I still had lots of pebbles to support me. If you get enough pebbles, friends, help groups, web sites etc and conserve them in a decent sized heap they can replace the rock to a large extent.
It was pointed out to me recently that at the table he watched what I did before he started eating and this was particularly apparent today. He didn't know which cutlery to use. His eating has deteriorated and he spills lots of food. During the meal he got up, gathered his trousers with the spill in it and walked into the kitchen There he stood by the sink and brushed it all onto the floor. It was like a stab in the heart. Later I swept up the floor, one doesn't say anything, he can't help it.
Each step downwards has to be accepted with a heavy heart and accommodation. You have to learn to go round the difficulties until sometime in the future when they get too much. There is only so much one person can cope with and I hope I can recognise the time when I need physical help. Being very independent this might be difficult but maybe my friends will tell me.
The psychologist said it is common for the level of loss to change from time to time but I must say it is very destabilising. You just get used to one level and blow me there's an improvement and it reminds you just what you are loosing. Then it all goes downhill and you are again reminded of your loss.
F was always my rock as well as husband, lover, confidant and provider. A good cousin in Australia helped me no end by telling me that although my rock was crumbling I still had lots of pebbles to support me. If you get enough pebbles, friends, help groups, web sites etc and conserve them in a decent sized heap they can replace the rock to a large extent.
Hello Tricia.
Yes. These 'moments of clarity' as I think they are called can become tricky to cope with. You are reminded of the person before their illness and the person with dementia regains enough clarity to better understand what is heppening to them. Jack used to get depressed and confused during these times and I used to get angry. Not with him, I hasten to add, but that life had thrown us such an unfair and rotton deal.
I used to tell myself that I was going to have to make a personality change too. I was going to have to become an efficient and organised person. {Difficult!} And I was going to have to be entirely relaxed about the wierd things Jack did so I could try to prevent him realising his indreasing shortcomings. In time I found that nipping into the garden and swearing at the sky helped me to keep myself. Just find your own path for dealing with the day to day difficulties. For a while it became Jack's and my secret little joke and I would try to find reasons to make us both laugh. I learned not to start a conversation by asking Jack a question because he first of all had to try and make sense of it. then he had to struggle for an answer and then, before he could reply he had to struggle to find the words. No wonder he sometimes used to get frustrated and ratty! If you can get over this by writing things down for him then why not? Everything is worth a try. Now it your turn to be the rock but I am sure he can still fulfil certain other items on your list.
Yes. These 'moments of clarity' as I think they are called can become tricky to cope with. You are reminded of the person before their illness and the person with dementia regains enough clarity to better understand what is heppening to them. Jack used to get depressed and confused during these times and I used to get angry. Not with him, I hasten to add, but that life had thrown us such an unfair and rotton deal.
I used to tell myself that I was going to have to make a personality change too. I was going to have to become an efficient and organised person. {Difficult!} And I was going to have to be entirely relaxed about the wierd things Jack did so I could try to prevent him realising his indreasing shortcomings. In time I found that nipping into the garden and swearing at the sky helped me to keep myself. Just find your own path for dealing with the day to day difficulties. For a while it became Jack's and my secret little joke and I would try to find reasons to make us both laugh. I learned not to start a conversation by asking Jack a question because he first of all had to try and make sense of it. then he had to struggle for an answer and then, before he could reply he had to struggle to find the words. No wonder he sometimes used to get frustrated and ratty! If you can get over this by writing things down for him then why not? Everything is worth a try. Now it your turn to be the rock but I am sure he can still fulfil certain other items on your list.
Hi Gary and Debbie.
When I read your email my first reaction was to punch the air and shout 'Yes! It does happen! Young people do still care! This me, me, me, society really is only for air heads!' Then I calmed down and gave some serious thought as to what I could say that could be of help.
Firstly, its difficult. No-one who has not experienced something of what you are coping with can begin to understand. Its the weird hoops you have to jump through in order to let the sick person be allowed to live happily in this other world which is theirs.
It is, I am sure, fairly natural that you will be less patient with the closer members of your own family. Maybe its a sort of tables turned experience from the past or maybe you are so familier with them that you just can't believe what time is doing to them. Maybe you can see that spectre of fear that looms up in front of so many of us. Is that what I'm going to be like? Its good you got an affection for D's Nan, though, as I am sure will be part of the glue that will help you both through it. It has been great to talk to you and if you ever feel like punching the wall then punch the computer keys instead and we can have another chat. Good wishes to you both
When I read your email my first reaction was to punch the air and shout 'Yes! It does happen! Young people do still care! This me, me, me, society really is only for air heads!' Then I calmed down and gave some serious thought as to what I could say that could be of help.
Firstly, its difficult. No-one who has not experienced something of what you are coping with can begin to understand. Its the weird hoops you have to jump through in order to let the sick person be allowed to live happily in this other world which is theirs.
It is, I am sure, fairly natural that you will be less patient with the closer members of your own family. Maybe its a sort of tables turned experience from the past or maybe you are so familier with them that you just can't believe what time is doing to them. Maybe you can see that spectre of fear that looms up in front of so many of us. Is that what I'm going to be like? Its good you got an affection for D's Nan, though, as I am sure will be part of the glue that will help you both through it. It has been great to talk to you and if you ever feel like punching the wall then punch the computer keys instead and we can have another chat. Good wishes to you both
Hello, I'm not actually a direct 24/7 carer now for my Father. I was as he lived with myself and my family for 13 years. He then spent 1 year on a heart ward in Llandough hospital because after his heart attack his dementia(Alzheimers)was so much worse we could no longer care for him and continue to function as a family.We could not find a home for him with EMI provision hence his stay in hospital. (Bed blocking) It was horrendous the staff were not trained in dementia care and did not understand his needs. The ward was not the right place for him but to no avail as there were no suitable places for him. However,he is in a very happy, safe and specialist home for dementia called Bryneithin which is in Dinas Powys. We all got our life back - to a certain extent.However now the same council want to close this "unique" facility! Money reasons and so starts the problems all over again. The stress on loved ones, the worry of the effects of moving on my Father, the fact that they (the council) wont say where the residents will go - its a nightmare!! There is now a 12 week consultation on its future and ultimately the residents HOME. Anyway if anyone would like to support Bryneithin in its fight to stay open and serve the most vunerable people of the Vale please write to John Smith MP or Jane Hutt AM. Thank you .
Dear Margo.
When I read your letter I said to myself "Jill! Its no good. You've just got to break your rule!" and I poured myself a drink! I was so angry. It is so unfair. Margo, let me explain here that I was asked to go on a fairly high powered committee as a 'Carer Representative'. I've been going for some time now as I feel that someone has got to support all those people who are too exhausted caring for their loved ones to have the time and energy to speak up for themselves. I decided that as my husband was then in full time care it might as well be me.
Anyway, please please will you get back to me to give me permission to read out your email at one of these meetings taking place next Wednesday. What you say is EXACTLY what I have been arguing about for ages and it would be total evidence and proof that many of them are, as I've already suggested, living in cloud cuckoo land. They just don't understand the reality of so many people's situations. I do hope you read this and get back to me. All the best. Of course there is no way I would mention your name - not unless you want me to.
Jill.
When I read your letter I said to myself "Jill! Its no good. You've just got to break your rule!" and I poured myself a drink! I was so angry. It is so unfair. Margo, let me explain here that I was asked to go on a fairly high powered committee as a 'Carer Representative'. I've been going for some time now as I feel that someone has got to support all those people who are too exhausted caring for their loved ones to have the time and energy to speak up for themselves. I decided that as my husband was then in full time care it might as well be me.
Anyway, please please will you get back to me to give me permission to read out your email at one of these meetings taking place next Wednesday. What you say is EXACTLY what I have been arguing about for ages and it would be total evidence and proof that many of them are, as I've already suggested, living in cloud cuckoo land. They just don't understand the reality of so many people's situations. I do hope you read this and get back to me. All the best. Of course there is no way I would mention your name - not unless you want me to.
Jill.
You can by all means read out my e-mail if it will help in any way. I would be interested in the outcome of the meeting. Perhaps these people might just feel they would like to support our campaign (even if not local). Its the principle - that its going on all over and the councils seem to be getting away with it. Its about time these vunerable people get a VOICE.
Thanks Margo
Thanks Margo
Hello Margot.
Its me back. Jill. Yes I did go to that meeting. I handed out copies of your email, asked everyone to read them and then asked them if they would be so kind as to tell me what I should write in reply to you. My request was met by a rather deafening silence!!
Once all those 'powers that be' had recovered them selves the gust of what they said was this.
1 Maybe it took rather a long time for your father to recover from his heart attack. I asked the person who said it if she was being flippant.
2 Regarding the care (or lack of it) your father recieved whilst, as a dementia sufferer, he spent a whole year in a standard hospital setting. It didn't help you or your father but there is, and I quote a 'Key Liason Team based at the University Hospital of Wales who visits patients with Mental Health problems at Llandough and advise on care.' I don't know if it is working well or even at all yet. It may be worth while enquiring.
3. Regarding Bryneithin. Yes you are absolutely right. There is a major consultation process going on and no-one will discuss the future of those, like your father, who see it as their home until this process is completed. All I could discover, however, is that this big old house and garden costs a fortune to maintain; will, if retained, need an absolute fortune spent on it if it is to be brought up to acceptable levels and even them the maximum number of people it will be able to care for is sevevteen. So I leave you to guess what the outcome of the consultation will be. I recently met a lady whose Aunt is also at Bryneithin and her concerns and fears are as great as yours. Her worry is 'Where on earth will they put everybody if the care home closes?"
Hope this is of some interest as I cannot say in all honesty that it is of much help.
Yours
Jill
Its me back. Jill. Yes I did go to that meeting. I handed out copies of your email, asked everyone to read them and then asked them if they would be so kind as to tell me what I should write in reply to you. My request was met by a rather deafening silence!!
Once all those 'powers that be' had recovered them selves the gust of what they said was this.
1 Maybe it took rather a long time for your father to recover from his heart attack. I asked the person who said it if she was being flippant.
2 Regarding the care (or lack of it) your father recieved whilst, as a dementia sufferer, he spent a whole year in a standard hospital setting. It didn't help you or your father but there is, and I quote a 'Key Liason Team based at the University Hospital of Wales who visits patients with Mental Health problems at Llandough and advise on care.' I don't know if it is working well or even at all yet. It may be worth while enquiring.
3. Regarding Bryneithin. Yes you are absolutely right. There is a major consultation process going on and no-one will discuss the future of those, like your father, who see it as their home until this process is completed. All I could discover, however, is that this big old house and garden costs a fortune to maintain; will, if retained, need an absolute fortune spent on it if it is to be brought up to acceptable levels and even them the maximum number of people it will be able to care for is sevevteen. So I leave you to guess what the outcome of the consultation will be. I recently met a lady whose Aunt is also at Bryneithin and her concerns and fears are as great as yours. Her worry is 'Where on earth will they put everybody if the care home closes?"
Hope this is of some interest as I cannot say in all honesty that it is of much help.
Yours
Jill
I have read your reply again and point 1 I wounnt even answer. Point 2 however is interesting as my father never had a key worker - except of course if you count me! I was the only one who really tried to look after him (except the staff would give him his medicine - sometimes and food) It was left up to me to deal with his cleanliness, clothes, entertainmnt or stimulation. Lets hope this is working now for anyone else in that horrendous situation.
Point 3 This old house would not cost a fortune to maintain if the monies had been spent on it. It has been allowed to 'run down' as the monies that should have been spent on it in the last 10 years (since it was reprieved) has been used elsewhere? Bryneithin has had an inspection every year and this year once again it has had an excellent report. The CSSIW stated, " the unfit for purpose has not come from us" If we felt that the home was unfit for purpose we have the powers to close it immediately or direct the providers of the care to put it right immediately. It has not been the case in Bryneithin. When I asked the Director of Social Services he stated that it was "unfit for purpose in the future" This dont you agree is a different slant and very misleading, I believe. The home will need monies spent on it but not an absolute fortune - cheaper by far than a new build and cheaper by people (meaning we wont have any deaths attributed to moving the current residents. The home can house more than 17 if they used the double rooms or converted them to single. The CSSIW have recommended that all homes should be 85% single occupancy by 2010 - Bryneithin has been made to be 100% occupancy and has been since 2008 therby loosing 3 beds. These beds are an invaluable commodity that the Vale cannot afford to loose but they have forced the home to do just that in the only specialised home for dementia in the Vale. More beds are needed and have been needed in the whole of Wales for a long time so refurbishing Bryneithin (thats all as structally it good) and extending as it has a lot of ground or even building seperate units is a real opportunity for the Vale to be forward thinking. I/ we as a group we are called Keep Bryneithin Open Group (and the other lady is a member) would be very willing to come and talk or answer any questions your carers may wish to ask
Kind regards Margo
Point 3 This old house would not cost a fortune to maintain if the monies had been spent on it. It has been allowed to 'run down' as the monies that should have been spent on it in the last 10 years (since it was reprieved) has been used elsewhere? Bryneithin has had an inspection every year and this year once again it has had an excellent report. The CSSIW stated, " the unfit for purpose has not come from us" If we felt that the home was unfit for purpose we have the powers to close it immediately or direct the providers of the care to put it right immediately. It has not been the case in Bryneithin. When I asked the Director of Social Services he stated that it was "unfit for purpose in the future" This dont you agree is a different slant and very misleading, I believe. The home will need monies spent on it but not an absolute fortune - cheaper by far than a new build and cheaper by people (meaning we wont have any deaths attributed to moving the current residents. The home can house more than 17 if they used the double rooms or converted them to single. The CSSIW have recommended that all homes should be 85% single occupancy by 2010 - Bryneithin has been made to be 100% occupancy and has been since 2008 therby loosing 3 beds. These beds are an invaluable commodity that the Vale cannot afford to loose but they have forced the home to do just that in the only specialised home for dementia in the Vale. More beds are needed and have been needed in the whole of Wales for a long time so refurbishing Bryneithin (thats all as structally it good) and extending as it has a lot of ground or even building seperate units is a real opportunity for the Vale to be forward thinking. I/ we as a group we are called Keep Bryneithin Open Group (and the other lady is a member) would be very willing to come and talk or answer any questions your carers may wish to ask
Kind regards Margo
