Carers

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…:heart:

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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.

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.