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Am no reading anymore you all sound so low on here think you should all lay off the forum for a while and find a more positive way to pass the time
Am gone
Hi Megzee,
Your words resonate completely with my experience, and having a husband who is equally older than I am makes me feel even more of a fellow traveller along this awful road with you.
Whilst I find this forum incredibly helpful and reassuring …just knowing that there are other people out there who share similar experiences, what I would really like is someone on my doorstep like you who truly “ gets it “ .but then maybe what I am really asking for is for this all to be taken away from us so that my husband and I could go back to living what used to be a normal life. All the support, kindness , wise words in the world aren’t going to make any difference to thefact of the matter and now that we are “ grown up” big girls and boys, we have to shoulder the responsibility and get on with it and not expect someone else to come along and do that for us. A tough call, especially when other have it so much easier ( though of course many who have it so much worse)
People say we shouldn’t feel guilty for being impatient, irritated, short tempered, etc etc , but we do because we know that we are capable of being otherwise, except at that particular moment when it all gets too much and we cannot summon the energy to respond better. It’s not okay, and we know it’s not okay ( we are decent people at heart) but we still can’t help it. Or at least I can’t. Maybe that is what compassion fatigue and burn out is all about, though I can hardly claim to have been at it for long enough to put myself in that category.
Ultimately each of us is alone, existentially, though we try to hide from or deny that fact in all kinds of different ways, but I have begun to wonder whether truly facing up to it then makes it easier to live with, rather than being involved in a perpetual but unacknowleged battle against it which involves trying to find ways of proving to ourselves that we are not alone.
It’s complicated. However much someone else understands and “ knows” no one can ever walk in our shoes and be truly with us ( then they would be us) and there’s the rub. Falling in love is so nice because it temporarily dissolves those boundaries…but that doesn’t last, as Scott Peck describes so well ( The Road less travelled ). But I digress…
Wishing you a day in which something happens to cause you to smile,
Warm regards, Pippa
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Hi @Ian_shearer1,
I appreciate that this may not be the thread for you, however, as long as people are not being abusive/ offensive in any way or are in breach of our forum rules, they have the right to express how they feel without being made to feel unwelcome on the forum. You are more than welcome to engage in other threads that are more suited to your interests, but please be respectful of other people’s experience/ point of view.
As you know, Parkinson’s affects everyone differently, therefore, we encourage people to share their experiences so that they can get the right information and support they need, here on the forum.
I hope you understand.
Best wishes,
Reah
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Hi All,
I’ve just joined the Parkinson’s forum, looking to find some hope I suppose. My dad has had diagnosed Parkinson’s for the last seven years in which he’s really deteriorated as of the last year. At the moment, he’s unable to do anything for himself, is continuously battling urine infections and confused – not sure if it’s dementia or Alzheimers. At the moment he’s not sleeping through the night, my mother and I are his main carers – it’s taking a toll on both of us. He’s on Clonezapam to help him sleep but no night or day is the same and we’re struggling. My mum struggles more so as she herself is not well, not sure what to do really - suppose I’m just ranting too and currently jittery from all the coffee I’ve had to keep me up at work – after a night of no sleep.
EC
Hi ERC,
I’m very sorry to hear about your father’s condition. This must be a very difficult time for you all.
Please take a look at our website, where you can find lots of information and advice for those caring for a partner or family member: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
If you ever need help or support on any Parkinson’s-related subject, please remember that you can always give our Helpline a try. You can reach them via email at [email protected] , or call FREE on 0808 800 0303 . They’re available on Monday-Friday from 9am-7pm, and on Saturdays from 10am-2pm.
I hope this helps.
Best wishes,
Owen,
Moderation Team.
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For those who object to the content of a post, leave the post.
For some this is the only outlet they have that comes close to understanding the extreme complexity of PD. The strands spread far and wide… friends, family…etc
Leave them to the necessary misery of having to share.
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How are you doing these days Megzee? Have had an early start to my day ( which rarely helps) and was just browsing the forum when I cam across this thread again.
So much of what you describe, the practicalities and the emotional stuff, resonates so strongly with my experience. Day in, day out, never ending till the end. Can’t afford to look too far into the future or to think how long this may last.
Some people do seem ( seem!) to cope better and I wonder whether that is a personality or temperament thing or what) but I am frequently dismayed to find that Florence Nightingale or Mary Seacole I am most definitely not .
Just getting through the day roughly intact, whatever that might mean, is a worthy achievement, though compared to former standards hardly feels like something to feel good about.
You know what? Maybe there should be one of these community based living schemes…I heard of one based near Stroud, but this would be for PWP and their carers…it would be , I think, a lot easier living alongside other people in the know, rather than feeling isolated and cut adrift from the mainstream. Sometimes it seems like parallel universes…the one “ out there, “ getting on with life, making a noise , and the other one , quietly hidden away, made up of all those with a debilitating condition of whatever sort, and those who look after them.
I am rambling…just wanted to drop by and say hi, and that you are not forgotten
Warm regards, Pippa
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To all the carers out there doing a good job and putting on a brave face, even though you are feeling down and exhausted, I for one appreciate every bit of effort you all put in to an unthankful position you have all been thrown into. I am unfortunate to be on the other side of the fence in that I have the dreaded parkinsons and I am quite aware that it can be as hard for those who have parky as those who are on the other side as carers. I sometimes feel I am a burden to my husband and cry for him and myself, knowing he is keeping to our wedding vows ‘for better and for worse’ but it still hurts. Wish there could be a happy medium somewhere for all of us.
All the best to you all - sheffy xx
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I am on both sides if the fence as I care for someone who has MND and I have Parkinson’s. Fortunately we have carers 4 times a day - and my Parkinson’s is mild. I keep myself active every day.
I am interested in the ‘Get it on Time’ courses but would be more likely to attend if a course was arranged in Cardiff
Ah sheffy. Thank you for your kind words. It sure is getting harder now. xx
Hello Pippa
I have read one of your previous posts which chimed so readily with me. I am a carer too and find it incredibly hard, exhausting and makes me hate myself. I feel angry so much of the time, I feel this could be helped greatly if there was a small sign of appreciation or a loving word from my husband. He seems totally unaware of my stress and exhaustion, which probably produces the anger. We do get good help and has two day care places a week. When I told my friend he had got the second one she replied, well you will be a lady of leisure now! So not true, this life just does not leave your life is totally controlled. My husband has dementia as well, so a double whammy. I belong to a Carers group which is wonderful, I love going.
Thinking of all my fellow Carers and wishing you well. C. @
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I feel your frustration in your words and know it can’t be easy. I know my OH gets frustrated with me more easily now and I don’t have dementia! He tries to be patient when we are getting ready to go out, it takes me so long even if we are just going shopping. I will not go anywhere without make-up on and making sure my hair is tidy sometimes he ends up going on his own. It is definitely no picnic being a carer and if mine and my hubby’s roles were swopped I’m sure I would feel as you do if the truth be known. I wish you well, along with all of your fellow carers, it is an unsociable disease.
sheffy xx
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Hi Sheila like yourself my hubby Phil gets so frustrated with me. _as I take so long to get ready… I can now actually see the worry in his face.
He retired last xmas and has Done none of the things he had planned to do because of me. As he is too scared to leave me on my own. As I have fallen so many times.
It
is b____y hard to live wit this horrible P D
Babsx x x
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All carers deserve at least a knighthood or indeed Dame hood although I may be slightly biased, being a carer myself.
Dame…Thomas of Oxfordshire 
™
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Hi Meg, Iv only just joined this forum and so Iv only just read your post.
It could have been me that wrote your post. Exactly how feel and what’s happening here. I’m exhausted and pissed off with our/my life too. I know it’s no consolation but just letting you know there is another woman, probably thousands of people out there doing and going through exactly the same thing as us.
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Hi @Molly3,
Welcome to the Parkinson’s UK forum. I’m glad that you’ve been able to identify with other members, it’s important for you to know that you are not alone and we are here to provide you with the right support. There’s a lot of information and advice on this thread which I’m sure you’ll appreciate, we also have an entire section on our website dedicated to carers which has even more information. I believeI’ve already included the link on this thread, but I’ll copy it here again - https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons.
Lastly, we have a free and confidential helpline with a team of advisers that have a lot of experiencing carers like yourself so if you ever need to speak to someone beyond the forum, feel free to give us a call on 0808 800 0303 or email us at [email protected].
Do take care.
Best wishes,
Reah
Forum Community Manager
Not sure if this is still current. I so empathise with this lady. My hub diagnosed around 10 years also. Last year we had terrible time with the patches causing OCD. We got some very murky months and now, just as things should be on the up he seems to be in a rapid decline. It is tiring, frustrating and downright bloody hard for him, yes and for me. I’m not well at the moment and everything is a struggle for me. He poor thing tries to help but makes it even more difficult as he always seems to be in front or behind me as I am trying so hard to get on with every day things. Today I lost all patience as I’m not feeling good, I told him to get out of the way as he is making everything harder. I try do hard to be patient but it is all so relentless. We used to go out, in the small window he used to have around early afternoon but now he seems to be I a 'bad day’s almost every day. Saw his neurologist yesterday and he had a good half hour for that. As soon as we left PK kicked in and he could barely stand.
No one can help I know, such a loathsome disease. I feel so bad at my lack of patience but it is all so trying - I hate what the illness had turned this intelligent man into. Sorry, need to vent is all.
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Hi @autumnlady,
I’m really sorry that you are going through such a stressful time at the moment. It sounds as if Parkinson’s is really taking its toll on both of you. It’s fantastic that you can vent your frustration on the forum, but I also wondered whether you and/or your husband have tried any local groups yet. They can provide great support through meetings, events and activities for you both. If you don’t know which one is your nearest one you can check it out here.
Also, please remember that we are here for you if you ever need to talk, get things off your chest, would like some information, advice or emotional support. You can reach us on 808 800 0303 (open Monday-Friday: 9am-7pm and Saturday: 10am-2pm) or on [email protected].
Best wishes,
Mara
Moderation Team
I have just come across “ The Selfish Pig”s Guide go Caring ( don’t be misled by the title) by Hugh Marriott who cared for his wife during the years she had Huntingdon’s disease. Written over 10 years ago now, it has to be the very best book of its kind and I cannot recommend it highly enough for anyone who finds themselves thrust into the role of a carer. I could go on about it for ever, but instead would just urge you to get a copy , keep it by the loo ( as Hugh suggests because when else do you have time to read anything? ) and read a couple of sentences or more when you can. He addresses all kinds of topics, thoughts and feelings , even the darkest and most unspeakable ones, with humour, humanity, realism, practicality. It should be given out on prescription !
Pippa x
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