Hi my name is Mandy and my Mum was diagnosed 7 years ago. Having a difficult time at the moment with Mum as she wont do anything to help herself. My Dad is her carer and now does everything for Mum. She seems to of just given up. Its awful to see her like this and we all feel if she did her exercises she would be a lot better than she is now. Dad wont say too much to her as she is very stubborn and he feels he will either upset her or she will not talk to him. Its a really difficult position to be in as neither Mum nor Dad will let myself or Sister get involved and raise our concerns with Mums GP. Just dont know what to do for the best. Any advice would be appreciated. Thank you
It is difficult to get a point across during an emotionally charged encounter. My only suggestion is your father should write a letter to your mother explaining his point of view and choices for the future. She should be given the letter and be told to read it when your father is elsewhere. At least she will have the chance to assimilate the whole situation in a calm environment..
Just my two cents worth.
Thank you for your response Peter. Thats a very good idea. I will suggest it to him and see how he feels about it. It is a very difficult situation to be in.
hello has your mum tried her local parkinsons group ,it may gently help her into exercise & socialising worth a shot !
I'm so sorry to read about the difficult situation your family is currently in.
As already mentioned, a local support group might be helpful for your mum. You can read more about those here: http://bit.ly/1aWHD9h
We also have a great network of local advisers: http://bit.ly/1oYJMHR
Please feel free to ring our helpline if you have any questions at all. You can reach us on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm).
Ilona (Moderation Team).
As sufferer myself I am just like your mum sometimes. But its not you she is annoyed with its that blasted pd. Its very fustrating especially when the meds take long time or dont work at all. Call the parkinsons he!pline and tell them about your concerns or talk to your pd nurse.
Need advise my wife is a sufferer with Parkinsons dementia, she is now in a care home and has had several falls at night damaging herself, we have only just found out that the carers are keeping her up in the residents lounge so as she will be tired and sleep through the night by late I mean midnight we feel that this is quite inhuman treatment, my first question. Is this usual practise for dementia suffers?
I cant speak for them lovely or what is normal practice, but as someone with Parkinsons i can tell you my mind needs to be tired as well as my body too sleep, An active mind keeps me awake.
I'm in the early stage of LBD myself which is the same as Parkinsons dementia and sleep is something that dose not come easily , if I manage 2-3 hours a night Iv had a good lay in I sometimes have a nap during the day but that will only be 20 minuets or so, going to bed when I'm not tired enough only ends up with me ending up uncomfortable and stressed and then having to get up again until I'm ready to try and sleep again .
We all suffer in different ways with it but if your wife's sleep patters are irregular then putting her to bed to early will only make her worse, the main thing is to try and keep her mind as busy as possible so she is tired enough to sleep when she in bed,
as long as your wife is getting as much sleep as she can then that's the best you can hope for and as long as she is not distressed by begin up late then don't worry to much about it .
You could try soothing music as that sometimes helps but if your mind is going 90 mph you will not sleep until your exhausted ,
Hope this has been of some help though sorry I have no real answers , everyone is affected differently and has differant needs .
Live well. Cc
Ps Im 59 and was dx with LBD last June .
Hi lovelydog, sorry to hear about your wife, I don't have dementia but do have parkinsons, and with this you do have bouts of not being able to sleep, no matter how hard you try. They say if your mind is active you can't sleep, I can go to bed and sleep for two or three hours and wake up and can't sleep again, I usually get up and have a warm milky drink, do a bit of crossword then go back to bed. On the other hand i can go to bed not get to sleep and have to get up again and have a milky drink. Not easy to get a good sleep pattern i'm afraid. I'm 64 whether it also has anything to do with age i'm not sure.
Best wishes, hope everything goes well - Sheila
I can't help but wonder how many others are in the lounge till mid-night?
I'd find out more about how your wife's whole day is managed by the care home. Perhaps get more information about how long they 'expect' her to sleep and how much she actually sleeps overnight, and her sleep pattern during the day. Ask about her daily routines and how they are supporting her to be mobile, busy and occupied.
Sleep needs vary, and the time/length of sleep varies with everyone - but with PD/dementia it may not fit the expectations of the care home!!
Sadly frequent falls are common in those with PD, my mother had a few. Some people have bars on their beds to prevent getting out of bed unaided - would that be an option for your wife?
Hope things improve for your wife, the solution to keep your wife up late should have a good reason which is in your wife's best interests.
Perhaps her Parkinson's nurse would have an idea to help...or the PUK helpline staff.
Hi sorry for the late reply. Mum wont go to any. She is a very private person so wont entertain going to things like that.
Ive spoken to the parkisons helpline who have advised us to speak to pd nurse. Myself and sister are too frightened to do it as Dad woul be very cross with us. No win situation at the min.
You can call the PD nurse on YOUR behalf. You can ask for support on coping with the situation that you are in - where you can't do anything to help someone else accept help - that you see a need for. If you phone on your behalf - then your Dad if he finds out - he may realise the impact all this is having on you and your sister.
If you speak to him about how you are finding it hard to watch what is happening, and are struggling.
Don't know if that helps -
I cared for my Mum for 10 years on her PD journey, when my mother was refusing help - and at the same time making demands on me....I got to the point where in tears I broke down and said that I couldn't do it anymore and was worn out with it all.
It was hard but I'd spoken to her doctor and he suggested that it wasn't a bad thing to let her know how hard it was for me, and that it wasn't all about her. (I was trying to be everything and do everything and follow all her requests to do X, Y and Z)
She was trying to carry on as normal but couldn't without lots of support from me, she would either ask for help 'now' when it wasn't immediately needed, or do things that then ended up with me having to pick up the pieces ( ie one day she went out to fill a prescription when she had a sore leg and made it worse and meant she could hardly walk for a week- and so needed more help.....all because she hadn't wanted to trouble me to go and pick up the prescription for her.)
She'd asked me to get some milk in as she had none...so I had gone up in a lunch break from work - to discover that she enough milk in the fridge but my sister was unexpectedly visiting that afternoon and she hadn't wanted to run out.....When I suggested she could have asked my sister to stop off and get some milk - Mum said that she hadn't wanted to trouble my sister (who rarely visited) who was very busy....That's when the tears flowed and I told her how hard it was for me at times.
I felt bad and phoned up the helpline to talk things over with someone 'in the know.' They helped me see it was the PD and it's associated anxieties talking not 'my Mum', but calling/talking to the helpline made a difference and things changed after that.
I know the situation is not the same as the one you are in, but finding a way for you and your sister to cope with the situation and your Dad to realise that the whole family is affected may come from you talking to Dr/PD nurse about your difficulties - hopefully your Dad couldn't be cross with that when he registers the affect on you that all this is having.