Support needed please

Hello everyone. I’m feeling a bit lost and maybe a tad pathetic right now, which isn’t like me, wondered if anyone has any experiences or suggestions for ways to get a break from caring. My husband has had pd for 12 years, he’s 77 and 22 years my senior. I totally adore him. Having done all the therapies and all the bucket list things he wanted to do, 2 years ago he took to his chair and said he’d had enough of doing exercises. Obviously this has had a negative effect on his parkies but I have had to accept his choice because I’m not 77 with parkies so I support him and do whatever I can to make his days better. He can be fab symptom wise and awful too, anxiety is a big problem for him even tho he’s on anti anxiety meds, he collapses often and ‘falls’ every day then we have learned to wait until his frustration and anxiety calm down before we try to get him up. He wakes up twice a night for a wee and needs help. The good side of the age gap is that I have the energy to cope with the workload although sleep deprivation affects that strength. He has children but for various reasons they aren’t able to help much. I, desperate for a break, my health is suffering and it’s the emotional exhaustion that is getting too much. I miss him so much and he’s quiet and doesn’t want to do anything. I recognise that I need a break to recover some emotional energy because being on alert 24/7 is so hard and each time he falls I’m scared it’s going to really harm him. I had 3 nights away in the last 16 months. I do get to go yoga and walk the dog and meet friends here and there but I’m always mindful as to whether he is ok so I can’t switch off. If a fairy waved a wand I’d dearly love a few nights away with the dog in the camper, peace, just restorative peace but how do I make that happen? Respite carers in the home at £22 per hour for 3 or 4 days is cost prohibitive and it’s a lot to pay someone to watch the telly as J is mostly independent but needs someone around in case he falls and hurts himself. He doesn’t want to go day centre or care home, I understand that, he’d hate it and I can’t put my needs over his happiness.

Is anyone else in this situation or has been? How do you get a proper break? Sorry for going on and thanks for listening. X

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Hi Castle, you can have my sympathy. I know that won’t help though. I have Parkies and I am a carer for my wife so I can see the problem from both sides. Sometimes you to go against your instincts and just go out for the afternoon, having talked to your partner. It is in both your interests to keep your sanity. Maybe there is a local Parkinsons support group that can help.
Good luck.

I understand exactly how you are feeling. My husband (with parkies) is 87 and 22 years older than me. I would love to have a break because I recognise that I am getting exhausted and my health is suffering. He falls a lot, is incontinent and gets confused easily. I went out for an optician’s appointment last week and came home to find him on the floor with a cut to his head and the beginnings of what became an impressive black eye. I feel angry that his attendance allowance has gone up by 45 pence a week to £85.60, yet if I find a care home that will take him for a week so I can have a break, I will have to pay over £1,000. More exhausting than looking after him, is the constant round of telephone calls I have make to try to get any advice. I am still waiting for a carer’s assessment. Like you, I sometimes think I am being pathetic and then I make a list of everything I have done that day, and I am amazed that I am still standing. I hope you find an answer, but if it helps, you aren’t the only one, and you definitely aren’t being pathetic!

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