Hi I’m sure it’s been asked before but are there any specific groups just for carers. I am a carer to my husband we have very good support for him in our area but none for me. I would like to be able to see how others manage the mood swings and being the target of their fear,frustration and anger. I have created my own space within our home and go to various groups (not Parkinson’s) but it doesn’t help when there is an outburst and all I want to do is disappear. The groups in my area are all geared for the sufferer which is great ( my husband won’t attend) so I feel a traitor if I mention the difficulties of dealing with the mental decline and not the physical decline which accompanies this disease. Any suggestions?
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Hi Jod…
I am a carer for my husband and I can relate to everything that you have said…we have groups around us all geared up to support the person with PD and nothing for carers…We attend a “working age” group even though we are now retired…and I find I am the only one who actually admits how I feel being the carer…The times I am told “for better or worse in marriage vows” etc…and I sometimes feel I should not voice my feelings…but we are human too and sometimes I watch my husbands decline with this alwful disease and want to scream and shout but have to go somewhere and cry in silence…this was not how our lives were meant to be …our plans cut short…and not 1 person ever asks how I am in the middle of it all…we have been together since we were teenagers and married for 46yrs…my heart breaks a but more each day…but I put on the brave face for my lovely husband…oh! How I wish I could turn back the clock…
Carers need help and support too…
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I understand how you feel. Living with PWP is hard - especially if they are pessimistic and negative all the time. I’ve given up trying to be a cheerleader as it just leads to even more outbursts of rage. When I mentioned this to his consultant he asked me if he had always been short tempered and there was nothing that could be done. Every day he tells me he can’t cope with the insomnia, shaking, and total exhaustion. Some days I want to run away! Today I told him , after he’d gone on and on about he feels, that my life is also over.
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Hi Jod and Babesbrown.
Reading your two posts has definitely struck a chord with me. My wife was diagnosed 17 ago and has, within the last eighteen months, declined rapidly with this awful disease. I guess it seems so disloyal to my wife of 43 years to be talking to other people about the difficulties we both face. Like both of you we have found some help with local PD groups ( although in our area this has decreased dramatically through COVID) rarely if ever do the carers that attend get chance to talk openly about how we cope, or don’t.
I have carers in place who have helped give me a little space - but it doesn’t make up for what we’ve lost as a couple. The things we had looked forward to in our retirement now replaced with endless questions, frustrations, angry outbursts, hallucinations and fear.
It helps to know there are others out there that understand what it is we are working through. Those that haven’t been through it just don’t know! Even though they try!
There is no doubt that carers need help and support too❤️
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The only thing I can think of is a carers organisation, eg Carers Northumberland. I imagine they exist in all areas? If you have a local Age UK they might have useful information.
It’s a horrible disease. People have no business talking about wedding vows, the only way to cope is loving and that’s hard when the Beloved has changed so unpleasantly.
You have to love yourself too.
My heart breaks for all of you.
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I must admit that I have been lucky so far, I am also a carer for my husband but he has not has the mood swings so far. I was having to help him with getting dressed as he couldn’t manage buttons and zips, small things he found very difficult and he was getting frustrated with this. I bought him trousers and shorts with elasticated waists and I leave his shirts buttons done up but just far enough to get the shirts over his head. I also had a dining room chair put in the bedroom so he can sit down while he gets ready and have had handrails put in all over to help him get around safely. These were put in free by the local council. He likes to cook but cannot manage to chop vegetables so I go in the kitchen and help. He also has a four wheeled rolator with a seat which allows him to get out of the house without fearing that he is going to fall. I realise that you probably have done these things but if you haven’t it may be worth thinking about some of the things that may help your Parkinsons sufferer to feel a little more independent and not so helpless which in turn may reduce some of the feelings of frustration and helplessness. Btw my husband is sitting reading at the moment , he has prisms on his glasses which help with the double vision.
Hi , I’m a new member, I’ve never been on forums before, so please forgive me if I seem nervous or apprehensive, I’ve been reading some of the emails, and I can relate to them ,my husband was diagnosed 5 years ago with PD and the change in him , he was also diagnosed with kidney cancer back in March,I’m his carer and also help him with daily stuff, I also don’t get any support from anyone, I’ve bought him items which help him , bathchair , electric armchair,and recently a mobility scooter. It’s nice to know that there are other carers in the same position whom I can talk to.
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Are you on Facebook? There is a site for “Partners of people with Parkinson’s”. It’s a private group and a great help if you want a rant. The only down side is my husband has only been diagnosed for two years and not showing bad symptoms. Reading everyone else’s posts did upset me as this is the future for us, depressing sometimes.
But in saying all that I find it a help to have a rant if needed and also helpful with any problems that come up. Speaking to people living with it is a help as my friends don’t really understand. They are there for me and know I am having a hard time coping but can’t really help.
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Hello To All,
I just wanted to say there are a lot of posts on the forum about about various aspects of the life of a carers, indeed I have written on this subject myself several times. You may need to trawl through them to find one or more posts that are appropriate or fit your concerns and not all get posted in the carers section so may be missed but If you put carers in the main search box or carers by XX if looking for posts by a particular forum member, it will bring up many pages on this topic. You may find it helpful to have a look at some of these. My own posts are quite wide ranging because they are written in reply to posts bur I would just like to make a point here - all of us with Parkinson’s live with the knowledge that we have a condition that will deteriorate over time and that this may include all sorts of challenging behaviour and dementia that can mean we no longer recognise you, or may be verbally or physically aggressive or whatever it is that makes you feel like you’re living with a stranger and very much alone, it doesn’t mean that we have never been aware or don’t know how hard life may become for you; nor do you know how hard it can be to live with the knowledge that we are the cause. Sadly we don’t have a choice, but until and if that time arrives we are not blind, deaf and dumb to the price you potentially pay. I am aware this won’t change how hard it may be for you, but it is not something we deliberately set out to do. Ultimately and as things stand at the moment, there is no cure, medication often becomes less effective and we are entirely in the hands of what the Parkinson’s dictates. As I have said elsewhere, there are no winners.
Tot
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Hi i am new to the forum i to am a carer to my husband he has had pd for nearly 12 years we have been married for 45 years yes it is also hard at times when husband struggles with switching off and then cannot get where he wants to , i also want to shout help but no where to go , my husband is awaiting dbs treatment next January so hopefully he will not have as much switching off episodes that will help us both so much.
Hello Pearl,
Welcome to our community forum. We’re sorry to hear things are difficult but we are happy to assure you that you’re not alone. Do reach out to our free and confidential helpline on 0808 800 0303 if you’d like to speak with a friendly advisor who might surprise you with the numerous ways they can help. They’re also happy to just lend an ear.
You’ll find that the DBS treatment is a common topic here. Some of our members have had it and some have not. If you’d like to view previous conversations around it just search ‘DBS’ from the main page. And of course you can find up to date news and research on our website at Parkinsons.org.uk.
We hope you’ll enjoy getting to know our community.
With our warmest welcome,
Jason
Forum Moderator