Does anyone know of a place where the family/carers can go to express their feelinsgs about PD?


#1
Hi,

Is there any other way of family memebers releasing their felings on whats going on with their loved one with PD without sounding like they are moaning? When they feel frustrated, angry, fed up, at dispair with it all and what the loved one is doing not doing to help themselves or admit taht more problems are occuring?
I have tried calling the PD helpline and still feel at a loose end.

Thanks

#2
Hi.

Talk to the Help Line, whose number is at the top of the page - they're amazing!

Best wishes,

Ray.
.

#3
Hi lesley83,
I've moved your thread over to this section (Carers, friends family) where I thought you might receive more helpful responses.

I'm sorry to hear that you're still struggling with these feelings without any outlet.

I gave a quick ring to the Carers UK-- they have a helpline at 0808 808 7777. However, this tends to be focused around practical advice. They also have a similar online community for carers of people with various conditions on their website http://www.carersuk.org/

They suggested that you could contact the Princess Royal Trust for Carers who have an online tool to help you locate carers' centres in your area here: http://www.carers.org/

I hope this helps.

Best regards,
Ezinda

#4
Hi Lesley 83

In the area we recently moved from the local Parkinsons' Branch held a regular Carers' Forum. It was just for carers' - no PWP - and also usually the PD nurse and PUK Support worker. I provided mutual support and help and we could discuss all the emotional and practical problems associated with caring for our PWP and was also great for venting frustrations. We knew that we could say what we liked without anyone judging us.

I realise that if there isn't such a group in your area this is not much help in the short term but perhaps if you are a member of a local Branch you could suggest that they start a similar group, or maybe even help to set one up.

Worrals

#5
Hi Worrals, If Ray of Sunshine's suggestion doesnt work, although it sounds like it should, I would just try for some generic counselling , this is about expressing feelings and dealing with them. If you find a trained consellor, then this is what they will be able to do. If you are feeling very stressed or even depressed your GP might find you someone, or even the organisation called 'relate' which used to be 'marriage guidance' they are trained to help people express and deal with their feelings, they dont need to know all about pd or what its like to be a carer to do this. worth a try? sunray

#6
"meeting for carers, no PWP"

What about the carers with Parkinsons?? We maybe a small band but we need all the support we can get.

#7
Hi Mandybike

Point taken!

Worrals

#8
Thanks Worrel

I am now carer for my mum who has dementia but until May 10 I was also carer for my father who had Parkinsons, he went into a nursing home very close to were we live and died a year later.
From personal experience caring for someone with dementia is far harder.

#9
Hi Mandybike

I would definitely agree with that. My OH has developed Parkinsons Dementia over the last year or so which was officially diagnosed just after the New Year. I am living with it 24/7 and am at my wits end.

In despair.

Worrals

#10
Hi lesley83,

When I was on the committee in our local branch we set up days where both pwp and carer's had a session where they could discuss problems or concerns separately in confidence. These were very popular and it meant that both parties had a better understanding of each others needs. These days were also very helpful as people exchanged tips on managing various problems or where to go for help in any manner of subjects. If the branch near you doesn't do this perhaps the branch information support worker would be your the best place to start as they have a lot of information at their fingertips.
Having looked after my husband for almost 30yrs I know how difficult the journey is and is ever changing, but I did do the welfare in our branch as well as other rolls, unfortunately the welfare position has been stopped for reasons I don't know but it is a great shame, so I hope it will be sorted out soon.
Crossroads do a counselling service so you could try there or the Princess trust which someone else mentioned.I think being involved in the branch helped me to cope as I was always busy and the friendship you gain and share is such a support all round. My friends both those who go to our church and others that don't have all been extremely supportive throughout and are still now that my husband is in a nursing home and several come to visit him even though it is a good hour away from here.
Is there anyone from you or your husbands work that visits as sometimes that can bring some relief.
I do hope you find some help soon.
best wishes
vivian.

#11
I have the same problem i have spent the last 2 months feeling angry, then guilty my husband is 20yrs older than me, so its harder anyway!! but it affects our whole family life. I don't have family support but would just appreciate someone to rant at or share experiences, i try to remain positive but im the only earner i work full time and i hsve a teenager who is fab but also finds it hard!!

#12
It's not my husband who has Parkinson's it is me. We are also carers for my mum who has dementia. We were also carers for my dad who had parkinson's and died at age 88 last May. I am finding it too sressful coping with Parkinson's and being a carer to my mum. My husband wants us to enjoy these years while we can and is understandably very resentful of my mum who has never been a caring mum but now makes my life a misery. We were happy being carers to my dad who always did all he could for his family.

#13
HI,
My local carers centre provides me with councelling which has no limit and is free.
I know each borough of london has a carers centre -not to sure where you come from ??
I had to wait a while but have been rec eiving councelling for 7/8 months.
Is there a carers centre where you live??

#14
I suppose I should not be advocating the qualities of another site but here goes anyway.
PD Junction has a facility to open a chat box. You could advertise for carers to have a talk together at a specific time each day or something along those lines.
I know that some like to remain anonymous but have a great need to share their problems, experience, highs and lows.
Just an idea!

#15
Yes Mandybike, it is very hard and stressful to care for a patient with Parkinson's Dementia as it is my case. I was given the tel no of an organisation which helps:
"Back on track" Tel:0300 123 1156 (Mon-Thurs: 9.30am-7.30pm) Fri: 9.30am-7.30pm
They apparently have councellors there. I do not know if they operate all over.
I did not come around ringing them because we are submerged with appointments at the moment.

I hope this is a help for you.
Good luck!

Natasha

#16
Thanks everyone. We live in the west midlands.
Have had a long chat with mums social worker who was very little help.
She did try to persuade mum to try residential care to give me a break but mum said no and apparently no one can make her. She does not relise that she has carers in and no way could she cope on her own but she is still allowed to make her own decision to stay at home.

#17

Hello. I am new to the online forum, and I hope I have the right section. I am a daughter of a father with PD, Alzheimers and vascular dementia. I supported my elderly Mum to care for my Dad for several years, until that got to a crisis point when Dad went into a home. After a while I felt a relief, and much less stressed, all of which remains, but now I am overwhelmed with sadness. Just saying this is helpful.

 

 


#18

Hello sadsusie, so sorry to hear how low you are feeling over this. You've helped care for your dad for so long and you mustn't feel any guilt that he has now moved into a home. Your love for him doesn't stop because of that. He is continuing to get the care he needs, and you can regain a bit of time for yourself. It's not easy for anyone seeing a close relative change physically and mentally before their eyes. I am early stages of PD. Nothing too major is preventing me from carrying on with my day to day living but I have a supportive family too. You and your mum have given so much support to your dad which is something I admire you for. The forum is a brilliant place to share those good moments and also e down ones so don't be afraid of saying what you feel or asking advice from the other members. Also the helpline number is there too. 

Take. Care and I wish you all the best,

sue


#19

Hello Sue, Thank you for your post. I am glad to hear that you have a supportive family with you. In my brighter times I know that we all have to take what is best from life.

Best Wishes

SS

 


#20
Hi Sad Suzie..I can understand how you feel..sometimes I am overwhelmed by sadness at this PD...my husband is the one diagnoised but I am the one who watches daily his changes.It is heartbreaking to see my husband of 40 years changing before my eyes knowing there is nothing I can do to stop the pain and hurt.My friends dont understand and make silly flippant comments about PD....they dont have to live in our shoes daily. We have 3 adult Sons and 3 Grandsons.2 of our Sons are married and 1 has just split with his wife leaving us basically without 1 of our Grandsons.... Then at the weekend our youngest Son told us that him and his partner are moving to The British Virgin Isles at Easter for his work. It will be for a minimum of 2 years.It is an amazing opportunity for him as hes always loved travelling. Friends comments are "think of the holidays".........I cant think about that as all I can see is at the moment my Family as I have known it,is being totally changed.With the PD living with us I am finding the whole lot tooooooo much to deal with. I spend my whole time saying the right things to my husband and Sons so I dont upset them.....when really I want to scream and shout and rant at the ununfairness of it all.... Who can I talk to? When friends and family are so busy being busy! Sad Suzie its a horrible place being a carer and I personally hate the person its making me become...even though I love my husband 100%.......sorry for the rant! Kleenex are making a fortune out if me lately...haha