Exhausted.com


#1
Happy Christmas everyone, I am new on here and need some support
I am the daughter and 2 nights a week carer for my beautiful and brave mum.
Until a few years ago she was active and independent and no carers within a few weeks this time a few years ago something snapped and since then she hasn't spend a day alone
We are at desperation point as the nights are a living hell and I feel like not getting anyway with local doc/ neuro
Worried how much more my mum and me can take
Lots of love to you all x

#2
HI, You certainly sound as if you and your mum need help. I know there are people on the forum that will be able and willing to offer you all the help they can.I know I have felt a lot better since joining the forum. But there are lots of people who can help you , so please don't despair you are not alone. Thinking of you. Blue Angel.

#3
Hi Exhausted. You have come to the right place for support. Hopefully there are people here that will be able to give you much better advice than I can. I myself have been diagnosed for just over three years, so I'm still a relative newcomer. I'm still working full time at the moment, but it won't be long before I have to at least cut down on the hours I work. The only advice I can give to you is to keep on at your mums consultant and gp. And if you haven't already,try and get an appointment and have a chat with the local parkinson's nurse. I suppose I'm better off than a lot of people. but as I expect you already know parkinson's effects different people in many different ways. I'm sorry that I can't be of much help to you, but, if you need a sounding board for any reason, you can mail me at any time.
Regards and a happy new year to you and yours.....Andy.

#4
Hi exhausted

My husband has MSA which is a related illness sometimes called Parkinson-plus.
We were in a similar position to you last summer. Because my husband is confused when he wakes because is is still living out his latest dream he could not be left in case he woke up dreaming that he was mountain climbing or had not taken his medication and ended up falling or overdosing. I am his sole carer on duty 24/7 including night time attention 2 or three times a night and was exhausted and stir crazy. Our daughter who lives in France visited and said this will not do. SHE took us down to the doctor who seemed more inclined to listen to her. I think they sometimes find it difficult to asses how much of what is said to them is exaggeration and how much is understatement and sometimes with the best of intentions they get it wrong and of course sometimes they are just not listening.

A conference was set up with a member of the practice who had more time than a standard appointment. and we were referred to various agencies. The Hertfordshire co-coordinator for rare neurological diseases, and the two local Hospices and the social services for a start.
What is on offer in your area will be different.

The outcome was that there is very little respite care to be had and night care is impossible. If you can afford the odd night's paid care even one good night's sleep will help you to cope. What they could provide was volunteers from the Hospices to sit with him for two hours a week each in the day time. I use it to go out but you might prefer to sleep
The other thing was a whole day at the local day hospice once a week for 12 weeks
which has been amazing.

Keep at them to provide help. Take someone with you to support what you say if you can There is help of some sort to be had if people take you seriously. Maybe not ideal but better than you have now

You are saving the NHS a fortune - if you are too ill to look after because you have been run into the ground someone else will find your loved one on their budget and that concentrates minds wonderfully.

Ask from a position of strength. Ask (very nicely) from the position of "This cannot go on" and explain that if nothing can be done to help you with your caring it will soon become their problem. Tell them that you need the matter reconsidered and something done about it urgently.

Is there more medically to be done about the bad nights? Your consultant (your GP can ask for an earlier appointment for you)may be able to adjust medication. my husband sleeps much better now that he has one of his 9 Sinemets if he wakes during the night. Can your Parkinson's nurse , if you have access to one, help you?

Be polite, firm, brave and determined and best wishes for a better new year for you both

Yellowbird

yellowbird

#5
Hi,

Carers are entitled by lawto an assessment of their needs quite apart from the needs of the cared for or even if the cared for person has refused help as sometimes happens. There is a Crossroads (charity based) respite care scheme rolling out across the country and there may be one in your area. They come into the home to provide care. In my area it is for emergency situations as there are other arrangements for plannned respite care.

The best thing to do would be for you to contact the Parkinsons free HELPLINE above left and they will be able to advise you how to go forward in getting what support there may be which differs from county to county. Also if you look at the home page there is a link which takes you to your local Parkinsons support group who may be able to tell you what's what in your particular area.

Most GP's will admit that, unless they have a particular personal interest, they do not know much about Parkinsons.

Best wishes