Hello my TP friends a happy new year! 2013 has been a torrid year, I lost my dear dad and mum has deteriorated since. She still lives alone, refuses to move anywhere and that's akways been the case not just since she got AZ. She has carers 4 times daily, who are pretty useless bar one or two of them. yes I have written and complaied to them but that's another story. Anyway mum is spending more and more time in bed during the day, lack of energy, refuses meds, hardly eats apart from toast and is aggressive if you suggest anything to her. I've been caring for her, and dad when he was alive for the last few years, and its taken its toll. I now feel I no longer want to care for mum as my health is suffering. I'm stressed, overweight and unmotivated. I'm getting more wound up with mum and I don't want to, I love her, shes my mum but she is so difficult to handle at times I just can't do it any more. I have asked her SW to arrange some respite care, mainly to test the waters and see how she reacts. I'm so worried about it tought as she is a wily old fox and seems to know when something is up. I don't want tot hink about her in care as she is so much more lively and with it then people in care, but she isn't coping, and neither am I. Am I doing the right thing or should I just carry on even though I'm unhappy. I just don't know what to do any longer. I've tried my best always but feel like I'm treading water and getting no where fast. Anyone experienced similar? Pls advise! Thank you xx
I can't carry on!
- Thread starter little shettie
- Start date
Hello, I think respite would be a great starting point. It will give you a much needed break and get mum accustomed to care away from the home - she may even like/feel more secure having people around 24/7, if your lucky!
It is possible to have a respite week every six weeks set up on a rolling basis. Maybe this is something you could consider? If so speak to your SW.
If the journey goes on long enough most sufferers reach a stage where their needs exceed that which can be provided in a home environment even with the outside help of 4 daily visits - you are just one person trying to cope and run your own life also!
Many of us feel a sense of guilt (my mum is due to go in to care sometime in January), but I know now I am not able to meet her needs. So, I have done the best I can by finding the best place I could. Only you know if you have reached this point - even then it may take you sometime to admit it and take the next step!
I wish you luck and hope respite is arranged quickly for you to have some rest x
It is possible to have a respite week every six weeks set up on a rolling basis. Maybe this is something you could consider? If so speak to your SW.
If the journey goes on long enough most sufferers reach a stage where their needs exceed that which can be provided in a home environment even with the outside help of 4 daily visits - you are just one person trying to cope and run your own life also!
Many of us feel a sense of guilt (my mum is due to go in to care sometime in January), but I know now I am not able to meet her needs. So, I have done the best I can by finding the best place I could. Only you know if you have reached this point - even then it may take you sometime to admit it and take the next step!
I wish you luck and hope respite is arranged quickly for you to have some rest x
You do need to look after yourself, and if that means you have to step back and let the social workers and carers step up, so be it. If she doesn't want to move, then she will have to tolerate the care she gets from the carers, even if it is less than ideal. Respite is a great idea, perhaps if she goes into respite and when she comes out you make a more firm decision on how often you are willing to visit, and perhaps reduce your weekly visits to a more manageable level. Get yourself to a point where you are not responsible for certain things that cause you the most stress, and make the carers responsible for those things.
Try not to feel guilty for looking after yourself first.
Try not to feel guilty for looking after yourself first.
Wishing you a Happy New Year too Little Shettie .
Your post was so like my own situation I had to respond. My Dad died in 2012 shortly after Mum was diagnosed with AZ. For 6 months my brother and I with our families cared for Mum 24/7 in her home with me travelling the 80 mile round trip twice a week. After six months we were all starting to buckle under the strain and my brother decided they could no longer continue. I don't blame him I don't think I could have gone on much longer either.
At that point SS became involved and Mum was given 4 care visits per day. I still visit 2 or 3 times a week, this is the only time Mum will eat, when I sit and eat with her. The carers are nice friendly people who are amazed at how well my 92 year old Mum does on her own. No matter how I try to explain to them they are convinced by her that she does everything for herself!
It has been much easier staying in my own home and visiting Mum however I am starting to feel the strain again as she deteriorates. She is judged to have lost capacity but refuses to go into care. It is true what you read on here SS will just leave you to carry on until you hit some sort of crisis.
I cant believe how cathartic writing this has been for me! Sorry to be so selfish!
You get very good advice on here and I think we need to follow it to make it a better New Year for all of us.
Take care and keep posting
Your post was so like my own situation I had to respond. My Dad died in 2012 shortly after Mum was diagnosed with AZ. For 6 months my brother and I with our families cared for Mum 24/7 in her home with me travelling the 80 mile round trip twice a week. After six months we were all starting to buckle under the strain and my brother decided they could no longer continue. I don't blame him I don't think I could have gone on much longer either.
At that point SS became involved and Mum was given 4 care visits per day. I still visit 2 or 3 times a week, this is the only time Mum will eat, when I sit and eat with her. The carers are nice friendly people who are amazed at how well my 92 year old Mum does on her own. No matter how I try to explain to them they are convinced by her that she does everything for herself!
It has been much easier staying in my own home and visiting Mum however I am starting to feel the strain again as she deteriorates. She is judged to have lost capacity but refuses to go into care. It is true what you read on here SS will just leave you to carry on until you hit some sort of crisis.
I cant believe how cathartic writing this has been for me! Sorry to be so selfish!
You get very good advice on here and I think we need to follow it to make it a better New Year for all of us.
Take care and keep posting
Little Shettie, you don't have to carry on if you are unhappy. I've read on here so many times that no adult can be forced to look after another adult if they don't wish to, whatever the reason. You don't have to justify this to anyone. I believe that you can ring Social Services and tell them you are no longer able to be your mum's carer and that you are handing over responsibility to them. I believe that Social Services do have a duty of care ... but you don't.
This looks so simple on paper but I realise how difficult it will be to do. But the time has come, I feel, for you to look after you.
You have done a stirling job but you have reached your limit.
xx
This looks so simple on paper but I realise how difficult it will be to do. But the time has come, I feel, for you to look after you.
You have done a stirling job but you have reached your limit.
xx
Thank you all for your comments. Lil50 you're situation does sound exactly like mine! I live far from mum and just the strain of driving back and forth is bad enough. Mum does not have capacity, yet the community mental health team are so reluctant to step in. Yes they put sensors on the doors incase she wanders which she doesn't at all, but that doesn't help me with the guilt and worry. It doesn't help mum with the loneliness. Its strange because mum does not see herself as an old person incapable of looking after herself. Shes 93 and physically in wonderful shape. Her brother is in care and when we visit I can see her looking around in despair at him being in a home and yet I'm about to inflict it on her and I worry that she will rapidly deteriorate in an institution. The one my uncle is in is secure and it feels like prison I must admit. I come away from there very upset, as does mum. But, I feel I've gone as far as I can now. I can ring mum and she can seem fine. An hour later when I call she is either angry or upset and morose. She is a very good actress and when anyone official comes to visit, they go away believing everything is hunky dory, its unbelievable. I feel like videoing her when I go as I see her at her worst. She's miserable living alone, vulnerable yet won't leave her home. Its a no win situation and though I do have 3 brothers, only 1 helps out now and then, the others do nothing. A magic wand is what we all need isn't it! Thank you again for taking the time to help xx
I could have written those words.
It all went downhill when mum began to wander. Nothing stays static. The loneliness gets to them and they go looking for company.
It may happen to your mum too. Within 3 months she was in a nursing home.
Hi Little SHettie
I do empathise.
Myself and my sisters look after mum as well and having families ourselves and full time employment. We all took it in turns to visit mum alongside the carers (30 min calls 4 x daily). Trying to organise the carers was hard in itself and eventually mum was sectioned. We have been advised that mum needs to go into care now although she is only 67 and is physically fit and active with real periods of lucidity and insight. SHe does not 'fit' anywhere. Myself and my sisters are selfishly worried about the effects this is all having on our own lifes and health although we love mum sooo much. Its all a nightmare so I do totally understand.
Please try to think about yourself in all this though because you need to stay strong and well x
I do empathise.
Myself and my sisters look after mum as well and having families ourselves and full time employment. We all took it in turns to visit mum alongside the carers (30 min calls 4 x daily). Trying to organise the carers was hard in itself and eventually mum was sectioned. We have been advised that mum needs to go into care now although she is only 67 and is physically fit and active with real periods of lucidity and insight. SHe does not 'fit' anywhere. Myself and my sisters are selfishly worried about the effects this is all having on our own lifes and health although we love mum sooo much. Its all a nightmare so I do totally understand.Please try to think about yourself in all this though because you need to stay strong and well x
Thank you MickeyBlueEyes, we are not really being selfish are we? How can we be when we have done as much as can do for our loved ones. I keep telling myself its the disease that's beaten me, not mum. I wish she had moved years ago when dad was alive, I tried to explain then that this would be best in the long term but sadly she could not or did not want to see that and neither did my short sighted brothers. But then they haven't had to care for her have they?!! I'm up and down with guilt and fear and sadness, its comes in waves but I have to be strong and get over it. I want my life back and I want my mum to be well fed, well cared for, safe and not lonely any longer. Is that such a bad thing? xx
I want my mum to be well fed, well cared for, safe and not lonely any longer. Is that
I think we have both reached the point when we know there is no other option. But it so hard to admit. You have done a terrific job and this new stage doesn't mean you are deserting your mother. You are doing the best for her you can and that is something to be proud of. I will be thinking of you...
I think we have both reached the point when we know there is no other option. But it so hard to admit. You have done a terrific job and this new stage doesn't mean you are deserting your mother. You are doing the best for her you can and that is something to be proud of. I will be thinking of you...
Happy New Year too, Little Shettie!
I can totally sympathize and empathize (I think). I don't have the travelling, but my mum lives with us (with AZ and VasD). She still manages dressing, personal hygiene, but does not cook or do any housework. She has lost all confidence, has no interest in going out (although constantly complains she has nothing to do!), but worse still, doesn't want me to have any life either. If I dare to go out (even to work), I get constant phone calls asking me when I'm coming home!!
Anyway, I'm ranting on. I am determined this year sort out some kind of respite, so at least Hubby and me can get out now and again. We are completely tied to the house at the mo. It's driving me nuts too!!
Sorry to rant on, but I know how you feel, and now you've made me more determined.
Thank you
Lu xx
I can totally sympathize and empathize (I think). I don't have the travelling, but my mum lives with us (with AZ and VasD). She still manages dressing, personal hygiene, but does not cook or do any housework. She has lost all confidence, has no interest in going out (although constantly complains she has nothing to do!), but worse still, doesn't want me to have any life either. If I dare to go out (even to work), I get constant phone calls asking me when I'm coming home!!
Anyway, I'm ranting on. I am determined this year sort out some kind of respite, so at least Hubby and me can get out now and again. We are completely tied to the house at the mo. It's driving me nuts too!!
Sorry to rant on, but I know how you feel, and now you've made me more determined.
Thank you
Lu xx
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