Desperately in need of support


#1

Hi

I'm new to this, but I don't know where else to turn.  My mum has PD and in the last 1-2 years has gone down hill so quick.  She is over sensitive to most drugs so can only take a tiny bit of senimet and she doesn't absorb any drugs properly so it's not having the effect it should.  She is in a wheel chair now whenever we go out, she freezes all the time, her blood pressure is so low and drops, she has quite bad dyskenesia, she has really bad irretible legs and on top of all that she's just been diagnosed with a leaking heart valve and such bad anaemia that they said she is bleeding internally somehwere which could be a sign of bowel cancer, I have supported my mum and I love my mum but I can't take much more, she's depressed as you can imagine but she constantly goes on about the same thing again and again and how she's had enough and she goes over the same thing all the time and the final straw was doing it at my little boys 5th birthday party a few days ago, I feel so guilty that I can't even put it into words but I can't help it, I don't want to be around her sometimes and I try my best but it just falls on deaf ears, we try and explain the positives from what the doctors are trying to do but she's negative about everything.  I feel numb to it all now and I look at my dad and feel so sorry for him because he's able bodied and his life is done basically because he can't do anything, he still wants to go on holiday but she can't really do that anymore as it's too much, we went to Mallorca last year and she was in a wheel chair then and it was hard and I realise that unless there was and is a miraculous drug etc the reality is she won't be able to go on holiday ever again, so is my dad suppose to just live like this, these are things that I feel guilty asking or saying out loud but I don't know what to do anymore, I feel like the worst daughter in the world for having all these feelings.  I just need some advice or other people's perspective on it all.


#2

Hi Reilly,

My heart goes out to you.....such a sad story. You must try not to feel guilty though, as you are doing your best. Your Mum needs a proper medical assessment, with an appropriate care package put in place, so that you and your Dad can have some respite. She is obviously very depressed about her situation, which is understandable, but you should not have to take on all the responsibility yourself. Do you live with your parents? Also, are there any other family members, apart from your Dad, who could help? There must be some specialist in the medical profession who can offer some advice about her reaction to drugs. You may have to pester your GP and insist on getting an appointment with a consultant. Otherwise your own health is going to suffer and your 5yr. old will end up suffering too.

I know how hard it is to see your parents go downhill and you want to do everything you can to improve their quality of life. But there comes a point when you need to reach out for expert help and advice and I would suggest your first port of call is your own GP. Ask for a longer appointment than the 10min. slot, when you ring and make a list of all the things you want to say and questions you need answering.

It may take a bit of time to find out, but there are many people who could help you.......social services, occupational therapists, McMillan nurses, PD nurse, Parkinson's social worker and I'm sure there are others. It's worth making enquiries and finding all the help you can get.

I do hope you find some solutions to your problems and that your Mum can come to understand what a loving daughter she has.

Twinks.


#3

Thank you for answering my post.

Unfortunately my mum has every doctor and consultant and specialist looking after her and she has had endless tests and tried different drugs and has still got appointments for different things in the next few weeks.

My mum can't find any proper help and we actually don't know where to go or to look for help for her.

It is so difficult and she is depressed but she just seems to want to bring everyone else down with her, it's a case of 'if I'm not happy then no one else should be' I sometimes think she can be very selfish and I've caught her making my dad feel guilty when he has done nothing wrong, every thing about PD is horrible, not just to the person that has it but to the people around them as well.

We don't have a huge family and what we do have I think are pretty useless to be honest and don't ever offer to help in any way.


#4

Hi /Reilly,

 

Have you tried the helpline at the top of this page.  ?    Also i f social services have already been involved, they should by law have done a Carers Assessment,, and talked through a plan of action for you yourself as a carer,

This may not result in monetrary help but should put you  in touch with someone who knows the ropes locally.  Sorry if you have been down all these paths.  Unfortunately people with chronic conditions can become very thoughtless of those around them.in their effort to control what's happening to them. 


Besr wishes

 

 


#5

Hi Reilly,

I'm so sorry to read about the situation with your mother. This must be ever so difficult for her, you and your dad. 

Are you already aware of our local advisers? They offer one-to-one support and information to people with Parkinson's and their families: http://bit.ly/1oYJMHR  This might be useful for all of you? 

We also offer support in other ways; via our local groups, peer support service, our helpline (0808 800 0303) and publications. If you wish, you can read more about all of these right here: http://bit.ly/1MLBQC6

Finally, you've already found that this forum provides people with lots of information and support too. So please do keep asking questions here, as sharing your experiences and reading how others deal with certain things, does really help.

Wishing you all the best,

Ilona (Moderation Team).

 

 

 

 


#6

Hi Reilly,

Some useful information for you.

 

https://www.citizensadvice.org.uk/relationships/looking-after-people/social-care-and-support/