Love this song ...... sums it all up!!!I've read similar threads before and thought about recording this to share, but... well, just because it's been part of my coping mechanisms for the last 18 months or so doesn't mean it'll help anyone else. And it's not a song I'm proud of having written, because... Well, everyone posting in this thread knows about "because".
Anyway... song about getting it wrong. Guest appearance by Mum, in what's now her default mode. Her foot still taps though.
Sometimes.
I read this and it really touched the right places. My dear wife of 50 years has this disease and has lost the ability to converse clearly. I have learnt through patience to try as best I can to understand what she is saying. On top of this she has very poor hearing. The disease is such that if she cannot make you understand she gets irritable and sometimes bad tempered. I have listened to advise and try as hard as I can not to react. Like you said I am not a saint or a martyr, and I do sometimes react. Again being human (I hope) it takes me time to come down whereas she can forget very quickly and not understand why I am 'prickly.' There are somany things about this disease that normal people are not equipped to deal with, so like you I must forgive myself. The most painful thing is watching someone who so independent gradually waste away mentally.I think there is a time for patience and being nice but I also think that trying to do that all the time is completely unrealistic for the carer. And very unhealthy.
I tend to go along with things with my husband for a while but can then feel tension building and I just have to let it out. You are a human being, not a saint and fatigue is soul destroying.
I know that the Compassionate Communication leaflet is very helpful but in my honest opinion I find that the total response is one sided and having to be all from the carer is not very realistic.I read this and it really touched the right places. My dear wife of 50 years has this disease and has lost the ability to converse clearly. I have learnt through patience to try as best I can to understand what she is saying. On top of this she has very poor hearing. The disease is such that if she cannot make you understand she gets irritable and sometimes bad tempered. I have listened to advise and try as hard as I can not to react. Like you said I am not a saint or a martyr, and I do sometimes react. Again being human (I hope) it takes me time to come down whereas she can forget very quickly and not understand why I am 'prickly.' There are somany things about this disease that normal people are not equipped to deal with, so like you I must forgive myself. The most painful thing is watching someone who so independent gradually waste away mentally.
Hi @Lawson58 My husband was in a good mood today, some dominoes with pictures I had ordered for him arrived and we spent an enjoyable time making up our own rules. All went went well until early evening and the sundowning started, am I married, where are you sleeping tonight, my wife was here today where is she? etc.I know that the Compassionate Communication leaflet is very helpful but in my honest opinion I find that the total response is one sided and having to be all from the carer is not very realistic.
I use some of it quite successfully but I am not built to suppress all my emotions at what I believe is a huge personal cost to myself. We all know that Alzheimer’s effects two people, the patient and the carer but everything is so centred around the person with dementia that the carer is never considered or offered the sort of support that is meaningful.
People will disagree with me and that is OK but I wouldn’t accept certain behaviour from a child and I find it very hard to accept it all the time from my husband. I was a teacher for many years and instinctively I react in a way that is not recommended by Alz. Soc. You have to protect your own sanity and having to mollycoddle some one all the time would drive me nuts. I worked with ‘special kids’ so not so very different in many ways.
Personally, the more I tried to bury myself in fulfilling his needs, the more miserable I became. Having a little burst occasionally releases the cork in the bottle.
I totally agree with you. I feel the information suggests the carer should be a saint, always putting their own needs to one side and sacrificing their lives to the PWD. I spend each day treading on eggshells, trying not to react to or provoke my husband's anger which is never far from the surface - one comment, one response that he doesn't like, anything that happens that he doesn't like and he loses it. This is no life.I know that the Compassionate Communication leaflet is very helpful but in my honest opinion I find that the total response is one sided and having to be all from the carer is not very realistic.
I use some of it quite successfully but I am not built to suppress all my emotions at what I believe is a huge personal cost to myself. We all know that Alzheimer’s effects two people, the patient and the carer but everything is so centred around the person with dementia that the carer is never considered or offered the sort of support that is meaningful.
People will disagree with me and that is OK but I wouldn’t accept certain behaviour from a child and I find it very hard to accept it all the time from my husband. I was a teacher for many years and instinctively I react in a way that is not recommended by Alz. Soc. You have to protect your own sanity and having to mollycoddle some one all the time would drive me nuts. I worked with ‘special kids’ so not so very different in many ways.
Personally, the more I tried to bury myself in fulfilling his needs, the more miserable I became. Having a little burst occasionally releases the cork in the bottle.
No, this is no life. Helped him with the shower, then he felt sick, pain, could hardly walk. I settled him in his armchair and he went to sleep.I totally agree with you. I feel the information suggests the carer should be a saint, always putting their own needs to one side and sacrificing their lives to the PWD. I spend each day treading on eggshells, trying not to react to or provoke my husband's anger which is never far from the surface - one comment, one response that he doesn't like, anything that happens that he doesn't like and he loses it. This is no life.
I know some people with dementia can be totally unpredictable and that creates the eggshells.I totally agree with you. I feel the information suggests the carer should be a saint, always putting their own needs to one side and sacrificing their lives to the PWD. I spend each day treading on eggshells, trying not to react to or provoke my husband's anger which is never far from the surface - one comment, one response that he doesn't like, anything that happens that he doesn't like and he loses it. This is no life.
Oh lollyc. How frustrating but I have to thank you, that made me laugh, I haven't laughed for quite a while but when I read, "well you booked him" I just laughed. Never had much to laugh at on this site, lots of support though, but oh how we need to keep out sense of humour. Thanks for a good Sunday morning laugh. Sending love and strength. XI really find this concept of agreeing with everything, however stupid, very tiresome. Especially when I'm told I've said / done something I haven't. Yesterday we had " When is the anaesthetist coming?" Apparently I told her I'd booked one - as you do . Hours and hours harping on about it. Eventually I went into a complete rant about the stupidity of the whole notion - only to be told " Well, you booked him!" Give me strength!
It is so hard to live like this, but before I joined TP I thought it was just me. It is such a relief to know I'm not imagining it all, my husband always blames me for his moods.No, this is no life. Helped him with the shower, then he felt sick, pain, could hardly walk. I settled him in his armchair and he went to sleep.
Something woke him up, he jumped up, put on his coat, off he went in the cold wintry day, his crocs on and carrying his shoes. By the time I got my coat and shoes on there was no sign of him.
I went to a neighbour's house, he was there, wanted them to phone the police who would get me out of his house.
The neighbour was marvelous, made us coffee while she was cooking her dinner. Chatted to him and he calmed down.
He has just gone to bed, doesn't remember it, he is all nice now.
Yes I agree with you. When my husband is angry, for no apparent reason, he needs to direct this anger and as the carer I am the punchbag - verbally and , a couple of times, physically. I don't know what will set him off, not only is he a stranger but I cannot be 'me' around him, I am a shell of the person I once was.I know some people with dementia can be totally unpredictable and that creates the eggshells.
But part of my dislike of the saintly patience required of the carer is that I believe that the person comes to recognise you as a target and uses his blow ups as a manipulative device, goading you because you don’t react.
Again, I know there will be those out there who won’t agree with me but I think that for many people with dementia, a degree of childish bullying readers its ugly head and the one person who can’t escape this rotten behaviour is you.
I have always try to read the situation, tried to be ten steps ahead of where he is going and respond early. Ever the feisty one, I will disappear into the garden, go and buy a paper, take the dog for a walk, do anything that will put a circuit breaker into the situation, anything to prevent the bullying.
Recently, we had a massive barney, unavoidable because it started when I was already in bed. However, usually if he is being nasty, I go out and stay out. He can be left for hours so I leave him to it. And I don’t say how long I will be or where I am going. This is about my survival, not his and my survival is every bit as important as his.
I am so sorry to hear that your husband is being so aggressive and you need to make sure that he doesn’t have the opportunity to hurt you again. Apart from making sure that you have a safe place to go and that you have your phone handy at all times, try and read the signs that he is building up to an episode and disappear outside, somewhere out of reach. Bullying is unacceptable and you have to put your safety first. You may find that if you disappear rather than let him abuse you, he just might eventually get the message.Yes I agree with you. When my husband is angry, for no apparent reason, he needs to direct this anger and as the carer I am the punchbag - verbally and , a couple of times, physically. I don't know what will set him off, not only is he a stranger but I cannot be 'me' around him, I am a shell of the person I once was.
Thanks @Lawson58, I really appreciate your support. I am very careful to try and not provoke him, I keep myself to myself but he is pretty volatile and unpredictable and would not be able to link me disappearing to his aggression. He doesn't seem to be able to control his moods, he has got physical twice, the second time my arm was bleeding badly and I had to call the police. He told his family that my injuries were self inflicted because 'I know what to do' to get him put away!! Social services are involved and have been very supportive thank god and they are looking into medication to try and calm him down. Fingers crossed!!I am so sorry to hear that your husband is being so aggressive and you need to make sure that he doesn’t have the opportunity to hurt you again. Apart from making sure that you have a safe place to go and that you have your phone handy at all times, try and read the signs that he is building up to an episode and disappear outside, somewhere out of reach. Bullying is unacceptable and you have to put your safety first. You may find that if you disappear rather than let him abuse you, he just might eventually get the message.
I am glad that you have been receiving such good support from both social services and the police. Now that you have called the police the first time, I am sure that they will respond quickly if you need them again.Thanks @Lawson58, I really appreciate your support. I am very careful to try and not provoke him, I keep myself to myself but he is pretty volatile and unpredictable and would not be able to link me disappearing to his aggression. He doesn't seem to be able to control his moods, he has got physical twice, the second time my arm was bleeding badly and I had to call the police. He told his family that my injuries were self inflicted because 'I know what to do' to get him put away!! Social services are involved and have been very supportive thank god and they are looking into medication to try and calm him down. Fingers crossed!!