Our mum has parkinso and just been diagnosed with dementia

[Jan60]

Hi,

Our mum has Parkinson and just been diagnosed with dementia my sister lives with mum and has done for the last 6 years. I believe mum has had Parkinson for at least 3 years and now she has been diagnosed with the early stages of dementia my sister is finding it difficult to manage now as mum is asking the same questions every day also my sister is going through the menopause so this does not help we all try to do our bit for mum but it isn't easy as the rest of us work Monday to Friday and our sister works Saturday and sunday nights. Its become a struggle so we have now had to put mums name forward to a sheltered housing nursing home of which we have looked at two council run places one of which is lovely but It could be along wait for a vacancy to be available in the mean time we just take turns in covering mum and making sure she isn't alone 24 hours a day. I have recently sent away for a lot of advise as we are unsure how to handle mum at times which leads me to the question should mum know that she has dementia my sister doesn't want her to know as she does worry about everything now days you should also know that our mums sister has alzheimers and has been in a home for many years this home is not really suitable but there is nothing we can do as my aunts husband is still alive so next of kin. However our mum has seen this home and she will think that all homes are like the one her sister is in and we do not want her to become distressed at the though of going into a sheltered housing nursing home for dementia. What would you advise should we tell mum that at some point she will be moving into a lovely new home or leave it till nearer the time and hope she takes it well. Very confused

 

[clareglen]

Not sure if there is anything to be gained by telling her. Could you do 'love lies' ie., you/we can't manage anymore so moving here/there would be best. My mum has been in a lovely home for nearly 2 months. Settled at first but on the 'I want to go home' phrase now. She has Parkinson's & Parkinson's disease dementia - a particularly nasty type of dementia I was once told & it is.

 

[Jan60]

Thank you for your comments

Not sure if there is anything to be gained by telling her. Could you do 'love lies' ie., you/we can't manage anymore so moving here/there would be best. My mum has been in a lovely home for nearly 2 months. Settled at first but on the 'I want to go home' phrase now. She has Parkinson's & Parkinson's disease dementia - a particularly nasty type of dementia I was once told & it is.

I am not sure if our mum has Parkinson dementia but would presume so Want to give mum some quality of life but unsure of how to. Reading through lots of literature on dementia and ways to help mum as she brought up 6 of us on her own most of her life and pulled out all the stops to be there for us just feel we are letting her down by not knowing how to cope with this.

 

[Jan60]

How long will it be before mum needs to go into the sheltered housing/nursing home

I will now be helping care for my mum as my sister can no longer cope but we have got her name down for a lovely sheltered nursing home but it could be quite along time before there is a vacate room. I will be starting next week caring on a shift pattern with my sister to care for our mum which will probably give me a better picture of how bad mum is as my sis keeps saying she is really bad but when I say with mum on a sunday she doesn't seem bad to me but Ive only done sundays so could be different on a day to day basis. I believe that mum is in this in the early stages of Dementia so surely we have afew years before she would have to go to a home, please advise me I will be claiming carers allowance paid by the DWP but its only around £61.00 per wk then I will have to claim income support to help me at another £45.61 per week also the DWP say you have to work 35 hours a week to be eligible to receive the money obviously I will do a lot more hours than this as this is our mum so I wont have enough time to get another part time job does anyone know if I would be allowed any more financial help

 

[LYN T]

Welcome to TP Jan60

I don't think that anyone can give you an answer as everyone tends to progress at a different rate-and that's the problem. You have done so well so far to support each family member to look after your Mum-she is very lucky to have such good children.

You are also doing well to look at plan B-looking at the assisted housing. Perhaps now that your Sister has a few extra hours 'off duty' as it were she will be able to recoup her energy. I found it was the relentless sheer hard work which I found the most difficult to deal with-plus the emotional turmoil. I do hope that you manage ok with the extra hours of caring that you are taking on.

Others will be along soon to give you the benfit of their experience. In the meantime keep posting as we are all here to help

Take care

Lyn T XX

 

[Jan60]

Thank you for your reply

I just want to make the most of the time we have with mum while she still knows who we are and try and give her some quality of life before we loss her and only have the her shell left

Welcome to TP Jan60

I don't think that anyone can give you an answer as everyone tends to progress at a different rate-and that's the problem. You have done so well so far to support each family member to look after your Mum-she is very lucky to have such good children.

You are also doing well to look at plan B-looking at the assisted housing. Perhaps now that your Sister has a few extra hours 'off duty' as it were she will be able to recoup her energy. I found it was the relentless sheer hard work which I found the most difficult to deal with-plus the emotional turmoil. I do hope that you manage ok with the extra hours of caring that you are taking on.

Others will be along soon to give you the benfit of their experience. In the meantime keep posting as we are all here to help

Take care

Lyn T XX

 

[canary]

This disease is awful to watch
You dont mention any extra help - carers helping with dressing etc, or day centre or anything. Does this mean that you are trying to do it all yourself?
Perhaps now would be a good time to ask SS for an updated needs assessment for your mum and a separate carers assessment for you. Think about what could make your life easier. They may not be able to offer exactly what you want, but I would be inclined to go for any help - its really hard to cope by yourself.
Dont forget that you can apply for council tax reduction as your mum has dementia.

 

[Jan60]

Thank you for your reply

This disease is awful to watch
You dont mention any extra help - carers helping with dressing etc, or day centre or anything. Does this mean that you are trying to do it all yourself?
Perhaps now would be a good time to ask SS for an updated needs assessment for your mum and a separate carers assessment for you. Think about what could make your life easier. They may not be able to offer exactly what you want, but I would be inclined to go for any help - its really hard to cope by yourself.
Dont forget that you can apply for council tax reduction as your mum has dementia.

Mum does go to a day care centre 3 days a week so me and my sister will get spare time to ourselves, we tend to do most of mum caring needs at present and it will be easier with both of us now. Mum doesn't enjoy the day care centre but we do realise mum will get a lot worse so we need our own time to relax. Mum is only at the early stages of her Dementia so we are trying to make the most of our time with her while she still does the ability to know who we are . Thank you for your comments much appreciated.