Hi all
I’m not sure what to say here but I know I am starting to struggle. My husband was diagnosed in 2021 with Parkinson’s and a few weeks later with dementia with Lewy bodies. I have managed to cope so far however it’s now starting to get me down. We don’t have any family that speak to us and we only have a couple of friends. I hate when I start to worry as it gets me down. It’s the guilt and the loneliness. My husband has started watching YouTube clips constantly and he has earplugs in to listen to the clips. Literally every time I speak to him he doesn’t hear me. So he has to say hold on, then he needs to stop the clip before he can listen to what I want to say. He won’t go out anywhere and due to his unsteadiness he is unable to help me. I’ve looked at holidays but can’t face the additional packing cases, making sure we have all the correct medications then having to drive to wherever. We also have a fur baby and she is totally spoilt. There is no way she could go into kennels so I would have to arrange dog friendly accommodation which would have to be self catering. If we went self catering it would mean me cooking, washing up etc so not really a holiday for me. I feel like I am losing myself. How we could get a holiday is beyond me. I just don’t know what to do? I couldn’t face a coach trip because of the fur baby, the same with a train. My husband has deteriorated in the last couple of months. He is driving me mad because he is constantly chewing his tongue? If he is not watching YouTube then he is constantly chattering and some of it is just to put it bluntly rubbish. I feel like he is fed up with me. I feel like I must drive him barmy. Honestly I just don’t know what to do. I can see the garden getting overgrown because I am not getting the opportunity to sort it out. I am rubbish at diy but I am trying to repair things. I just feel sad and unhappy then guilty for maybe not looking after my husband as much as I should. I dare not ask about a carer as I have money in a savings account but that is for funerals as we dont have life a insurance. My husband would never agree to respite care and refuses for anyone else to come into the house. Maybe I am selfish as he is the one who is unwell. Do do have however stenosis of the spine, osteoarthritis and I found out this week that I have bone spurs on my hips which are impinging on nerves. I have a fibroma on my foot. I also have a prolapsed disc in my neck and a bulging disc in my lower spine. Nobody sees that though and that doesn’t help either. I am sorry to be so negative and I should stop moaning and get on with it. I am so sorry if I have offended anyone or come across as sounding like I am after a pity party
Hiya. That all sounds really tough, I feel for both of you.
Are you in contact with local carer’s support?
Simon
Hi
I’m in touch with connecting carers and they are a god send. We do a craft session remotely generally monthly. If the craft session is popular then sometimes you may not be able to get a slot. Other than that they are the only people I’m in contact with. My husband has just accepted an hour of contact with a befriender. It’s taken 4 years for that however he immediately cancelled the first two weeks. I worry if I’ve got to pop out, because my husband has refused a mobile phone with an SOS 
button. This was because he set it off twice by accident. Literally though over the last few days I have to walk behind him to steer him in the right direction and to prevent him falling. I feel like I’m constantly moaning and putting obstacles in the way when anyone makes a suggestion.
To me it sounds like you’re doing an amazing job in really difficult circumstances!
Does he have a Social Worker, and wheb did they last do an assessment of his and your needs?
Hi ,
Hello
I agree with Si and think you are doing an amazing job. Just a few suggestions that come to mind:
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Contact your council and ask Adult Social Care for an assessment of need. There could be a waiting list so get on it. If the social worker was to call out and explain their concerns about your health and wellbeing as his carer, do you think it would make a difference as its coming from them?
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Consider a weekend away in a dog friendly hotel with amenities around you… if it has to be self catering just bring breakfast things and get takeaways or Deliveroo. Bring two changes of clothes and throw jackets into the boot. Keep it simple.
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Ask local care homes about day respite. Many have craft activities so if that’s an interest, go along and bring himself with you, even for a morning. If he gets used to going and knows people there, he might eventually go himself. If they offer transport, take it and again it wont be strange if they collect him. A care home would be thrilled with a crafter like you.
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Maybe try create a routine in the day, where you hsve meals/coffee together and thats when you have your chats. Dedicate some part of the day to You Tube and use that time to get out in your garden or read a book. Would your husband sit outside and listen to the radio while you garden?
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Insist the hour with the befriender is rebooked and kept. Have a plan and a purpose for the time s/he is there.
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Depending on your financial situation would a cleaner help? You would be there at the same time but could do something else.
You absolutely need a bit of time to yourself and nobody knows what the future holds. The sooner you gradually start bringing other people in to help in small ways, the easier it will be if things change.
Thank you for sharing, TheLippyOne, and for offering some great suggestions and advice to Westpest!
Hi Westpest, first of all, I just want to say thank you for sharing such an honest and heartfelt post. Caring for a loved one with Parkinson’s and dementia with Lewy bodies can be incredibly tough, and it’s so important to recognise when it’s becoming overwhelming. The feelings of guilt, loneliness, and exhaustion you’re experiencing are completely valid, and you’re not alone in this.
It sounds like you’re doing an incredible job despite all the challenges you’re facing. It’s also important to remember that it’s okay to ask for help and take some time for yourself. I’d highly recommend reaching out to our helpline at 0808 800 0303. Our trained experts and specialist nurses can offer advice on managing care, respite options, and accessing local services that could lighten the load.
Wishing you strength, and know that you are doing an amazing job. You are seen, you are doing great, and it’s okay to ask for help 
Parkinson’s UK Moderation Team
Hi Must agree with the other members you are doing an excellent job!! but if you work to much you will not be able to look after your self or your hubby, now this is what advice I woud give you. First contact Parkinson’s UK next your local council who can give you addvice on what or if you can claim. don’t let this about money get to you?most of us have been there at some time or other and lets not forget you and your hubby have worked hard all them years and it’s your entitlement. Have you ever thought of getting a pre-paid funeral once done It’s not being classed as savings and you will feel so much better ect. Also Citizens Advice they know most things about everything. Holidays I found out though the internet that there are holiday people who help eg, they will go with you, they will look after you hubby and do so much to help you, Just type in on you computer disabled Holidays, I know disabled holidays with help, and belive it no there are quite a few. I do hope this helps you sort things Please keep posting let us know how it as gone on, anything at all might just help other members.