My mother who is 82 was diagnosed with Parkinson's about 5 years ago. None of the medication has ever helped her - she has only got worse. At the moment she is on requip XL recently put up from 8mg to 10mg. Sinemet gives her auditory and visual hallucinations but so does the requip now. Because of this she has been diagnosed with Parkinson's and Louis Bodies Dementia. My father died suddenly last year at 84 - he was the rock of the family but even he had difficulty coping with her. I have now got to the stage where I can't cope. I have a full time job - she lives with me - I also have a dog. I am going to Italy for 5 days holiday next week but I don't want to come back. I am a middle aged single woman who feels their life has ended. I have no one to look after my mum while I am away - although she can still cook and wash herself just about. Someone has promised to walk the dog. Please don't mention social services becuase they are not interested they only want to call by and wash her which she can do herself. I am so stressed it is untrue. Tonight she was going spiritual healing but it takes her about 6 hours to get ready and she was not ready in time. I just screamed and shouted at her - I would rather not be with her now. A couple of months ago I went on a carer's website and outlined my dilemma and state of mental health and some woman highjacked my posting and went on about herself and everyone was replying about her not me! I was the needy one not her! Oh I sound awful don't I. My mother gets worse at about 6pm and sleeps deeply, some nights I can't wake her and I have to leave her downstairs - she wakes up at about 3am and comes int my bedroom arguing because I have left her downstairs. And I have to get up at 5.30. Sometimes she is lucid, sometimes she isnt. I worry about the dog more now I think. I used to be pretty but now I look a mess, I am drinking more (wine) and eating more. I have spoken to the Parkinson's nurse but I didnt really get any joy there - an appointment for her in 4 months time. Is my mother the only person who Parkinson's drugs havent been beneficial for? Why did my able bodied father die and leave me with her?
I know you will think I am awful to say these things - is there anyone out there who can give me any advice because I am on my own I am an only child and I do have friends but they have just put their parents in care homes something I never wanted to do. One other thing is that she is so untidy, is this a trait of Parkinson's - she has actually trashed my house and her bedroom looks like a rubbish tip. Hope to hear from someone.
Regards.
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Hi Jumper,
Please, please ring the helpline above 0808 800 0303. They will be able to help you explore what your options are. At the moment you are probably going round in circles feeling trapped in a situation over which you feel you have little control. One thing about being the only one (as I was) is that you won't have to put up with siblings who keep well out of it but have plenty of advice as to what you should do which has been the experience of friends of mine.
As far as feeling guilty about the prospect of eventually putting your mother in a home, when I was diagnosed one of the first things I thought was "Well, at least the kids won't have to worry about what to do with mother because in all probablity I will need residential care in the long run"
Please, please ring the helpline above 0808 800 0303. They will be able to help you explore what your options are. At the moment you are probably going round in circles feeling trapped in a situation over which you feel you have little control. One thing about being the only one (as I was) is that you won't have to put up with siblings who keep well out of it but have plenty of advice as to what you should do which has been the experience of friends of mine.
As far as feeling guilty about the prospect of eventually putting your mother in a home, when I was diagnosed one of the first things I thought was "Well, at least the kids won't have to worry about what to do with mother because in all probablity I will need residential care in the long run"
there is nothing wrong with you.
please ring the help line.
mrs.t.
please ring the help line.
mrs.t.
1 Like
Agreed. Mrs T knows best.
Hello Jumper
Every emotion you are going through is quite understandable to me. Personally I would say that your first port of call is to your own GP and explain that you are on the edge.
The very fact that you don't want to return from your holiday speaks volumes. I feel so sorry for your mother but feel strongly that her needs would be best met in a specialist care home. Lewy Body I understand is particularly hard to deal with in that it is unpredictable and possibly something which you are now ill equipped to deal with.
I'm so sorry that you are going through this hell and hope that you can get help as soon as possible.
Take care
Kind regards
JC
Every emotion you are going through is quite understandable to me. Personally I would say that your first port of call is to your own GP and explain that you are on the edge.
The very fact that you don't want to return from your holiday speaks volumes. I feel so sorry for your mother but feel strongly that her needs would be best met in a specialist care home. Lewy Body I understand is particularly hard to deal with in that it is unpredictable and possibly something which you are now ill equipped to deal with.
I'm so sorry that you are going through this hell and hope that you can get help as soon as possible.
Take care
Kind regards
JC
hello jumper.
I think that you may well have bravely admitted to feelings that many carers might share. I don't think that you are awful.
You mention that social sevices do not provide suitable help. Have you tried Age Concern? I don't know your area, but in some areas they have an Independant Living Service & a worker will, as far as is possible, do just what you require - shopping, transport to appointments, housework, cooking, sitting chatting.
with my best wishes
I think that you may well have bravely admitted to feelings that many carers might share. I don't think that you are awful.
You mention that social sevices do not provide suitable help. Have you tried Age Concern? I don't know your area, but in some areas they have an Independant Living Service & a worker will, as far as is possible, do just what you require - shopping, transport to appointments, housework, cooking, sitting chatting.
with my best wishes
Dear All - thank you for your kind words and support. I have been and gone on my holiday - I arrived back today - my mother stayed on her own, I got a dog walker for the dog. I phoned her twice a day and she said she was tidying up and coping well. When I arrived home this afternoon the house was like a bomb had been dropped on it so very untidy and messy and my mother looked a mess as well. I feel like screaming now. The day before I went I was so busy and worn out I never had time to go to bed. I was an exhausted wreck when I got on the plane but loved every moment I was away and really didnt want to come back. Because I knew it would be worse. There is no one who can help me because my mother does not want to go in to a home, she cannot be forced. In her mind, there is nothing wrong and she is coping well. I do appreciate the advice you have given but there is no help from social services only washing if needed and age concern are not able to offer any help either. Neither is my doctor.
Hi Jumper, you must get help for yourself and for your mothers sake. Please do phone the help line 0808 800 0303 they will be able to give you options.
Take care
Take care
Hi Jumper,
The following tells you about the local authorities to assess your needs as a carer to preserve your health and wellbeing. It does not involve your mother's consent but may be of help in considering your options.
Assessments for carers : Directgov - Caring for someone
www.direct.gov.uk/en/CaringForSomeone/.../DG_10026286 - CachedSimilar
As a carer you are entitled to an assessment from your local council to see if there are any services that can help make things easier for you.
The following tells you about the local authorities to assess your needs as a carer to preserve your health and wellbeing. It does not involve your mother's consent but may be of help in considering your options.
Assessments for carers : Directgov - Caring for someone
www.direct.gov.uk/en/CaringForSomeone/.../DG_10026286 - CachedSimilar
As a carer you are entitled to an assessment from your local council to see if there are any services that can help make things easier for you.
First line shoud read....... local authorities duty to assess......
For info, "Age Concern" and "Help The Aged" have now merged, to form "Age UK".
.
.
Hello everyone - eventually I am back on the forum. Well I went to Spain for 5 days and a couple of neighbours popped in and saw my mum and walked the dog and apart from my house being really untidy - although it is not that tidy at best as I work full time my mum had survived although she claimed she had developed sciatica and the GP confirmed this so she is now less mobile than usual. Well I suppose I was trying to my luck so I selfishly went on holiday for 10 days - OK I know I shouldn't have but I was desperate - it is not just caring for my mum that wears me out I have a really busy full time job as well. The GP offered her respite which she refused so the same neighbours did the same thing as before - I phoned her twice a day and she appeared okay. However on Friday, I was dropped of by a cab and couldn't open the front door when I did eventually manage to get in the door she was standing there in the stone position - head nearly down on knees with trousers and knickers by her ankles. The house was in awful state 10 days of washing up and the kitchen looked like it had been bombed as does the rest of the house - I am not even a quarter way through yet of tidying up. She is hallucinating wildly now -foxes in the house a burglar in the house all the time and she is very spiteful and nasty with it. Her sister who really doesnt get involved called me and told me that there was nothing wrong with my mother it is all the drugs she is being forced to take and I just want to get her put in her a home out of my way! I was very upset about this and was crying espcially as the sister then started speaking to my mum who was in the midst of dementia and was just answering yes and know and her sister said to me - see I told you so she agrees with me!
Mum's condition was getting worse so I called emergency doctor who came out and told me that she was extremely stiff and he thinks it is because she is has not been taking her medication. I don't know what to do she has an appointment with the practice nurse on Tuesday for something else but she is really out of it now she has been asleep now after her bout of nastiness for about 4 hours on the sofa I have not disturbed her but she has had nothing to eat or drink but I really don't want to wake her to suffer more abuse. I am paying mightily for my second holiday. I will phone social services on Monday but I know they won't be interested. I am meant to go back to work on Wednesday but really don't want to but don't want the GP to put me off sick with stress because it will look so bad on me at work and as I am 58 I am frightened they will get rid of me and I need my job.
Mum's condition was getting worse so I called emergency doctor who came out and told me that she was extremely stiff and he thinks it is because she is has not been taking her medication. I don't know what to do she has an appointment with the practice nurse on Tuesday for something else but she is really out of it now she has been asleep now after her bout of nastiness for about 4 hours on the sofa I have not disturbed her but she has had nothing to eat or drink but I really don't want to wake her to suffer more abuse. I am paying mightily for my second holiday. I will phone social services on Monday but I know they won't be interested. I am meant to go back to work on Wednesday but really don't want to but don't want the GP to put me off sick with stress because it will look so bad on me at work and as I am 58 I am frightened they will get rid of me and I need my job.
Oh goodness, you really need help. Isn't the GP the first port of call,to access other help? My Dad became unmanageable at home after developing a urine infection, being horrible, unable to sleep, unable to move to the point where I couldn't feed him. I called the GP, who sent out the district nurse and while she was there I got a phonecall saying my daughter had been rushed to hospital, so I had to leave. Then the nurse arranged for Dad to be hospitalised, where they ended up diagnosing Lewy Body dementia as well as the infection. From then on the system seemed to take over, and now he is in a care home, which is the only manageable option as I live 50 miles away from his house. (he's in a care home near me)
If you don't get help one or other of you will end up in hospital!!
Would work give you compassionate leave to get it sorted out?
Lyn
If you don't get help one or other of you will end up in hospital!!
Would work give you compassionate leave to get it sorted out?
Lyn
Hi again, if you want to talk to someone contact me via my email address, it's somewhere on here.
You must sort this out: both of you unwell is not good. You are neither selfish nor mad: just human.
Please remember the helpline.
mrs.t.
You must sort this out: both of you unwell is not good. You are neither selfish nor mad: just human.
Please remember the helpline.
mrs.t.
Thanks everyone for your support. I am, at some stage, getting a care and a carer assessment from social services. Also another care society is getting someone round to see me. Today had to drag my mum to the car as she is frozen solid to take to docs appointment. The GP said that it doesnt look as if her medication is being properly managed and told me to contact the consultant or the parkinson's nurse who never responded to my call so spoke to the consultant who said that my mum was okay when last seen just over a month ago if I felt she was deteriorating it was the GPs area or if I felt it was that bad then take her to A and E and get her admitted - not that they would know much about parkinson's so would probably contact him anyway. So that was no use was it. He ended up by saying that he might try and fit her in a forthcoming clinic. Mum has been an absolute cow all day screaming at me, accusing me of ruining her life and all sorts of things. Luckily I have managed to get myself a sick certificate for a week but I just can't cope especially with the dementia.
I am so very sorry Jumper. You are dealing with a terrible situation. I wish I had a solution to offer. Perhaps Lynp's suggestion of A&E might be the way to go?. You are probably right - they will know little about pd, but if your mother is admitted you will at least know that she is in a safe place & you can let the system take over. There has to be a starting point
With my best wishes
With my best wishes
Is there anyone else who you trust to talk to?
It is not fair on either of you, there is only a certain amount we can all cope with, which is why we live in a civil,caring society.
Keep talking.
It is not fair on either of you, there is only a certain amount we can all cope with, which is why we live in a civil,caring society.
Keep talking.
Thanks to all - things are better at the moment - I do think my mum was not taking her medicine properly - she is even walking around now that I have taken control and am monitoring it. I am still awaiting a visit from social services but hopefully will get one soon. I just hope she continues to make a decent recovery for when I return to work next week. thank you all for caring.
Hello jumper
First of all you’ve been given good advice in the replies already given and I hope you will act on some of the suggestions.
I want you to know and believe that no-one here on the forum will judge or criticise you for anything you have written or how it was written and I hope it helped a little to get it off your chest.
When replying to a post one has to be a little careful because all there is to go on is what the person chooses to write and there can be loads of
factors affecting that which potentially invalidates any reply. So you need to be aware whatever I write may not be accurate; it is only how I see it from what you’ve written and a bit of reading between the lines.
In your case however I have decided to go out on a limb and be blunt in a way that I wouldn’t normally write since it is ultimately your decision.
You write very candidly and honestly about your situation, that you can no longer cope, that you are due to go on holiday but are already dreading coming home. On top of that you have a full time job, are running your home and caring for your dog singlehandedly and I suspect still grieving for the sudden loss of your father because you haven’t the time, energy or probably support to mourn his loss fully. That is an awful lot to cope with and it is not surprising you are near breaking point and clearly you cannot carry on like this, not only for your mother’s sake but yours too.
My feeling is that you have got to be a little braver and give the statutory services a chance to help whatever your previous experience. First of all I think you should seek a carer’s assessment, that’s an assessment of your situation and what can be done to offer you the support you need to continue the caring role for your mother if that’s what you want. Again to be blunt as I see it, I’m not sure you do and I fully acknowledge that is a hard thing to admit, it’s your mother after all and you should be able to cope shouldn’t you, Wrong. There is no should about it. Caring is a very difficult role, not everyone is cut out for it, it is frequently underestimated how exhausting and relentless it is, all the decision making falls to the carer and in some cases it can go on for years. The worst bit I think is that there is no-one to share your day, or take pleasure in something simple like having a simple chat. Living with someone when you are their carer can be more lonely than living alone. You have my respect for keeping all the plates spinning for as long as you have. There is no shame in admitting you can’t do it any more. That is brave and honest thing to do. It doesn’t mean you’ve stopped loving or caring about your mother or that you’ve failed, only that with the best will in the world you can no longer meet all her needs or yours.
People have very fixed views around around care… They talk as indeed you have written of putting someone in care home as if it was always negative. Many thrive in the right home because have company and things to do so don’t assume it’s always bad thing. There are other options that a proper assessment may identify as being appropriate. I think you owe it to yourself to find out so that you can make informed decisions based on what you know rather than assumptions based on little fact.
Be brave and be honest with yourself and you will doing right by your mother wherever that leads
Sorry if this has been a hard read, but rightly or wrongly is how I see it. It may not be 100% correct but perhaps it will allow you to see your situation a little clearer
Sending you a virtual hug
Tot
Was glad to read things are a little better and perhaps you feel able to carry on and that’s great but do think about what I’ve written you may find it helpful some time. For now I’ll just say enjoy your holiday and hope things are ok when you come home
Tot
Dear jumper, please don’t stop posting - your story is so familiar to me! Having so little support, no clear pathway of instructions of “if she gets to stage X, do Y”, everything feels so helpless and thankless, and some days you just go to bed hoping you don’t wake up because it will be over then. I am sitting here in tears after a week with my mum, and was reading through others’ posts when I stumbled on your story. If I could give you a RL hug I would, and we could go for a brew and have a good rant.