thanks guys. It certainly has been a big hill to climb.
Today for example has been a day I would rather of not woken up to. My nan is actually ill. For months (if not a year) she had been waking up every night being sick. Today she got up and has swollen cheeks (no idea if its abscesses, or anything worse) which has made her drained and unable to do much (shes spent most of the day sleeping on the sofa and has barely any energy to talk). Her approach however (which is has always been) isnt to see a doctor no matter what anyone says to her, instead its to just carry on as normal and hope it goes away.
Funnily enough today though my mum is having a really good day, shes been doing a fair bit by herself, and seems in a good mood.
I was told that the babys scan is at the end of the week (thursday). Iv got an option to go but since its a very late appointment the difficulty is know I would have to stay in that town that night after the scan until the following evening. Feels difficult with my nan being in the way she is in and having to attend to my mum when/if I go to the scan
Ok I read all of your stories but itâs the personality extremes I find difficult to deal with. My husbandâs personality is exaggerated and not in a nice way! I refuse to be any personâs whipping post - the times when it occurs leave me desolate for days. How do you all cope.
The phrase âYou always hurt those you love the mostâ springs to mind , a truth for many of the carers here I am sure.
My husband has now had Parkinsons for 17 years with moderate dementia. The advice I would now give myself in the earlier years is to get help through counselling much sooner than i did. Use your counsellor whenever things get bad, It always helps to feel there is someone who has your back and to whom you can vent. Donât feel that you always have to try and fix things. Learn how to walk away and or divert unreasonable behaviour. Develop your own interests and friendship groups if you can,do things that will feed your emotional needs. I fully appreciate for some whose pwp cannot be left this may be particularly hard. Work hard to find out about all the support available. Finally realise that you are the most important person in this scenario If you break everything will fall apart= self care is a priority and feeling guilty is definitely NOT allowed.
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Thankyou I am already doing some of those things my counsellor is a god send. But at times it all seems too much.
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Yes I understand the hurt can feel overwhelming and I have been through some really hard times. I have had to work really hard on myself to get to where I am now but trust you will get through.
Other people simply canât understand and if they try it simply sounds like inane platitudes and quite patronising. When you are dealing with a complex situation even professional advice can sound completely inadequate. I am sure people mean well and are simply at a loss for words as what you are dealing with is outside of their experience.
Just wondering ,if you have the resources, would it be a good idea for your husband to talk to a clinical psychologist ? They know about how Parkinson affects thinking etc. and often have considerable experience of neurological illness.
One of the techniques I have used in the past is to imagine myself as a good professional carer and how they would deal with difficult behaviour. This helps to detach yourself emotionally from your husband and then perhaps you wouldnât feel quite so wounded by him.
Private message me if you wish to vent or indeed anything else
Hi Merker. Donât beat yourself up for being angry. You may not have Parkinsonâs, but your life is being affected in a way nobody of your age wants. You have my sympathy. I have Parkinsonâs and it affects my friends and family and I expect they get angry sometimes. I wish you well.
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