hi everybody,
i hope everyone has had a good christmas and is looking forward to the start of a new year!
I have come back from University to spent the christmas period helping out my Dad who is looking after my Mum (59) who has genetic early onset alzheimers. Because i study so far away (i'm in Manchester and 'home' is Surrey) this is the first time i have been back in about 3 months and Mum has shown considerable decline. I think people who see her more often are less aware of the changes but each time i come back i am hit by how much less she can do and how much more anxious she is. Anyway, in order to prevent this spiraling into ramble i will get to some specifics...
Mum's posture has got very very bad, to the point now that she is continually walking around bent over facing the floor. I was wondering if this has been the case for other people, my Dad says Mum's Mum was like this at one stage but i can't remember it. We have asked for advice from Physiotherapy, who apparently popped in for 10 minutes, asked Dad what he was already doing (which he showed her) and she just said that was fine and left.... am i being naive in thinking that more could be done? it just seems that as the condition is degeneretive people aren't bothered with trying??
Secondly, her mobility is much worse and she can no longer climb stairs without a great deal of support and often trips and gets nasty bruises and she cannot walk for more than 3 or 4 minutes now. As we have a dog to walk.... the carer will take mum in a manual wheelchair and my Dad has dug out his Mums old 'shop mobility' electric thing which he takes her out on (Dad doing the controls of course...!). He also uses a board of wood at the top of the stairs when they are up there in case she tries to get down the stairs when he isn't there to help, and similarly we place a little table at the bottom of the stairs when we are down there in case she tries to climb them (you get the idea...!?). I have a friend who works as an Occupational Therapist and i spoke to her for advice on adaptations etc. She honestly told me that the lack of funding and resources for the profession meant that there would be a long waiting list etc so i'm not hopefull. Apparently there is a grant of up to £1000 which can be awarded for equipment, but for things of a greater cost (eg a stair lift) the process can take up to a year. Well. we all know that in a years time Mum's needs will have changed dramatically and so i'm not really sure where to go with it all next. Anyone been here, done it and got the t-shirt? any advice!?
on a similar note, my Dad applied for a disabled parking badge so that when taking Mum out they have less distances for her to travel, but never heard back (which we are assuming means rejection!!?) has anyone been successful in securing such a permit for a person with dementia?
Finally... (i think there is lots more i am forgetting but hey ho) my Dad, who currently has support from a carer mon-fri for 12 hours so he can continue to work is finding things increasingly -and understandably- more difficult. Mum doesn't sleep well at night (up down up down...) which means that though the carer comes so he can go to work, he is so tired the next day that he is as good as useless (he works self-employed doing building plumbing etc). I could write a whole essay alone on this area, but in a nutshell i'm worried about him. He does a great job with Mum, but is quick to anger and often talks about how he can't 'go on like this'. The real trouble is - he refuses to talk to a counsillor, or helplines etc. He is so obsessed with the stigma surrounding "therapy" etc that even though i have begged him to try it he refuses! He will talk to me, but i really feel that i am not the 'person for the job' as i struggle myself and so don't feel that i can be as strong for him as he needs. I have a Sister, but they don't get on (that's a massive understatement actually!) and he is an only child with no other family. My Mum has a brother and sister in law who try, but they don't have the kind of relationship in which Dad could confide in them. I would love for him to have access to the TP forum but he has no internet, can't really even type and is quite dyslexic.... hmmmm...! i have copied a few threads for him to read, so that he can see that he is not alone but it isn't really the same!!
anyway, if anyone has any advice on the above...?
actually there is one more thing aswell... mum has Lorezepam prescribed to help her sleep at night, but we are finding that on the nights we give it to her (which we try not to do) the next day she is really 'out of it' and grumpy (constantly saying 'oh shut up' 'just shut up' while we are trying to wash and dress her)and also that she seems to have more difficulties with saliva management the morning after too. Has anyone else found this, or come across a better tablet which helps with sleeping without the side effects?
right. promise i'm going this time.
hope everyone managed to have some form of christmas celebration!
Suzanna
PS: Christmas was cancelled as Mums one brother who had invited us over became ill and we just couldnt be doing with the additional stress of cooking something elaborate!
PPS: Thanking the forum once again for being a place of respite and in advance for any responses this may recieve!
i hope everyone has had a good christmas and is looking forward to the start of a new year!
I have come back from University to spent the christmas period helping out my Dad who is looking after my Mum (59) who has genetic early onset alzheimers. Because i study so far away (i'm in Manchester and 'home' is Surrey) this is the first time i have been back in about 3 months and Mum has shown considerable decline. I think people who see her more often are less aware of the changes but each time i come back i am hit by how much less she can do and how much more anxious she is. Anyway, in order to prevent this spiraling into ramble i will get to some specifics...
Mum's posture has got very very bad, to the point now that she is continually walking around bent over facing the floor. I was wondering if this has been the case for other people, my Dad says Mum's Mum was like this at one stage but i can't remember it. We have asked for advice from Physiotherapy, who apparently popped in for 10 minutes, asked Dad what he was already doing (which he showed her) and she just said that was fine and left.... am i being naive in thinking that more could be done? it just seems that as the condition is degeneretive people aren't bothered with trying??
Secondly, her mobility is much worse and she can no longer climb stairs without a great deal of support and often trips and gets nasty bruises and she cannot walk for more than 3 or 4 minutes now. As we have a dog to walk.... the carer will take mum in a manual wheelchair and my Dad has dug out his Mums old 'shop mobility' electric thing which he takes her out on (Dad doing the controls of course...!). He also uses a board of wood at the top of the stairs when they are up there in case she tries to get down the stairs when he isn't there to help, and similarly we place a little table at the bottom of the stairs when we are down there in case she tries to climb them (you get the idea...!?). I have a friend who works as an Occupational Therapist and i spoke to her for advice on adaptations etc. She honestly told me that the lack of funding and resources for the profession meant that there would be a long waiting list etc so i'm not hopefull. Apparently there is a grant of up to £1000 which can be awarded for equipment, but for things of a greater cost (eg a stair lift) the process can take up to a year. Well. we all know that in a years time Mum's needs will have changed dramatically and so i'm not really sure where to go with it all next. Anyone been here, done it and got the t-shirt? any advice!?
on a similar note, my Dad applied for a disabled parking badge so that when taking Mum out they have less distances for her to travel, but never heard back (which we are assuming means rejection!!?) has anyone been successful in securing such a permit for a person with dementia?
Finally... (i think there is lots more i am forgetting but hey ho) my Dad, who currently has support from a carer mon-fri for 12 hours so he can continue to work is finding things increasingly -and understandably- more difficult. Mum doesn't sleep well at night (up down up down...) which means that though the carer comes so he can go to work, he is so tired the next day that he is as good as useless (he works self-employed doing building plumbing etc). I could write a whole essay alone on this area, but in a nutshell i'm worried about him. He does a great job with Mum, but is quick to anger and often talks about how he can't 'go on like this'. The real trouble is - he refuses to talk to a counsillor, or helplines etc. He is so obsessed with the stigma surrounding "therapy" etc that even though i have begged him to try it he refuses! He will talk to me, but i really feel that i am not the 'person for the job' as i struggle myself and so don't feel that i can be as strong for him as he needs. I have a Sister, but they don't get on (that's a massive understatement actually!) and he is an only child with no other family. My Mum has a brother and sister in law who try, but they don't have the kind of relationship in which Dad could confide in them. I would love for him to have access to the TP forum but he has no internet, can't really even type and is quite dyslexic.... hmmmm...! i have copied a few threads for him to read, so that he can see that he is not alone but it isn't really the same!!
anyway, if anyone has any advice on the above...?
actually there is one more thing aswell... mum has Lorezepam prescribed to help her sleep at night, but we are finding that on the nights we give it to her (which we try not to do) the next day she is really 'out of it' and grumpy (constantly saying 'oh shut up' 'just shut up' while we are trying to wash and dress her)and also that she seems to have more difficulties with saliva management the morning after too. Has anyone else found this, or come across a better tablet which helps with sleeping without the side effects?
right. promise i'm going this time.
hope everyone managed to have some form of christmas celebration!
Suzanna
PS: Christmas was cancelled as Mums one brother who had invited us over became ill and we just couldnt be doing with the additional stress of cooking something elaborate!
PPS: Thanking the forum once again for being a place of respite and in advance for any responses this may recieve!