Hi iv just read your post after not being on here for a long time & it’s exactly me. My husband has Parkinson’s & now just diagnosed with Lewy body dementia. I was finding coping very difficult due to changes in him. I got an emergency Parkinson’s appointment where he was diagnosed with LBD. The medication given for this has made such a difference. He’s interacting more, he’s more alert. Don’t get me wrong it’s still hard but I feel it’s helped. He still gets up 4/5 times a night for a wee. This is a very difficult manoeuvre as he goes rigid getting in & out of bed. I have to help & he uses a jug at side of bed otherwise we would be there all night getting to bathroom. Routine is the thing the helps his meds are in a pill pack which is great but he needs prompting. Food needs cutting up in a dish so he can chase it round the bowl. The list of help goes on. I got a personal assistant for him once a week for couple of hours to give me time out. He didn’t want carers so this is a compromise. He has walker in the house & wheelchair out. Another difficulty getting in & out of car. Physio helped they learnt him to say big steps when he freezes. Telling the brain what to do. It works sometimes so that’s good. This blooming disease is unbelievably difficult but it’s here & we have no choice except muddle through. Enjoy the odd times they feel there back. Good luck
Hi iv not been on for a while things have been so tough dealing with my husband as he takes all my time caring for him. When I’m not with him I’m still worry about him so never relax. Nights are still difficult he’s getting up 4/6 times a night to pee. I have to get him in & out of bed because rigid. Iv had a carers assessment & have been granted an allowance for respite. This is something Iv found difficult but I know it’s very necessary me to carry on caring. Iv booked a weeks holiday & hubbys going to respite. I know it’s going to be for the best & when he comes home I’ll have to settle him in to routine again but it’ll be worth it.
Hello Jane 0804
For what it’s worth, I think you are absolutely doing the right thing however, I want to make a comment or two if I may, just in case some things happen that you don’t expect.
Some people get put off arranging respite for the person they are carer to because they are very unsettled when they return home and that initial week or so can negate the benefits you may have had by having the break. I would encourage you to stick with it if you can. What people like your husband struggle with is the change in routine, being left in an unknown place with people he doesn’t know - I can only imagine how bewildering if not downright scary that might be. If it becomes part of his normal routine (and it sounds like you may be eligible for regular respite) and he goes to the same place each time, he will settle down and just be part of his life. You may be lucky and he just accepts where and who he is with and slot back into home life with no problem but be prepared that it can be hard and as I said try and stick with it at least a few times and see how it goes.
Second don’t underestimate how strange and unfamiliar it will be not to have the caring role which takes up so much of your time and energies - it can be as overwhelming as anything your husband is experiencing in respite. Someone once described it to me as feeling like they had lost a limb, something that was always there was suddenly gone. Many spend their first respite wondering how things are going (in this case) for your husband, many have unexpected feelings of guilt that they had to resort to this and somehow failed because they couldn’t cope or even feel guilt because of the relief at being ‘rid’ of the person who has so changed your life and then feeling guilty again because you think that. It can be a vicious circle. It helps if you can recognise if you find yourself thinking like that and be aware it’s all normal and, if you can, make an active decision to put it to one side. - you know why you are doing what you did and you know in your heart of heats it is the right thing for both of you and always try to remember that.
Finally it is a holiday, your life matters every bit as much as your husbands so relax and have fun doing whatever you want to do. I really do hope you have a wonderful time - and that this is the first of many.
Tot
Thank you for your response I know there’s a lot to consider & consequences to using respite. Iv thought long & hard but for me I have to recognise I need a break to recharge. I chose the full week because of the problems I could foresee ie if he had a short stay he may not want to go back. The fact he will be unsettled there & coming home. But hopefully he will get used to it & accept respite. For me I have to try it so I can carry on caring for him.
Good for you, I am sure you are doing the right thing for the right reasons and you have clearly thought about it very carefully. It is important that you take care of your own physical and mental health if you are to continue in the caring role as you wish and I have much respect for you in having the courage to make this decision which so many are not able to do and for which they pay a heavy price - an engine can’t run on empty and neither can you.
I really do hope you have a lovely relaxing break and who knows, your husband may cope well with the change of scene and not cause you too many problems on your return - it is not altogether unknown - but even if it’s not that simple it will have been worth it. I hope you will post to let us know how you got on - that could be of value to other carers who are in a similar position to yourself.
Enjoy yourself 
Tot
Thank you I will definitely let you know the outcome
Hi I’m back after a long break due to a change in circumstances. My husband had a fall Easter Sunday. Went into hospital 2weeks then transferred for assessment to community hospital 5weeks. He’s now in full time care as it was decided he could not return home due to his care needs to keep him safe from falls. So it’s been a major life change for me. Thank goodness not so much for him as his Parkinson’s & LBD has progressed so he doesn’t appear worried by it. So Parkinson’s & LBD have won taking him from me. Such a cruel illness & on top of that iv had to have a financial assessment filling forms outs the last thing I needed. Now waiting to see what the outcome will be. People say to me well the positive is you’ve got your life back. No I haven’t iv not got what we had my husband. Sorry
Hi jane 0804. You have my every sympathy for what you and your husbandxare going through. My husband has noe been in an assessment unit for 5 weeks. His parkinsons took a sudden huge dip this year, affecting memory, continence, mobility nental state all at once. Still dont have a diagnosis, but signs of dementia are prominent. At home, its the nighttime continence issues i would struggle with. He was coping with bottles at one point, but seems to now struggle with that. He never fell at home, he falls every week in the hospital. I m awake at 2am typing this, so i dont ‘have my life back’ either, but thats because i know he is not getting the same care i used to be able to give. I know i couldnt manage as he is right now, and im struggling with that. Hoping for miracle medication after proper diagnosis, but realistically, dont expect it. Not the way we hoped to live out older age…but it is what it is. Thinking of you and everyone else going through similar x
Few staff in general hospitals have any understanding of Parkinson’s, worse than that in my opinion, is that they take little notice when either people with Parkinson’s or their carers try to explain how we can best be helped individually as well as about Parkinson’s generally. If they don’t listen to us who will they listen to?
Tot
They just dont understand the wear offs which crack me up, trying to encourage someone to move…’ come on you can do this’. .when the drugs are depleted. All of the family are constantly ‘politely’ reminding them.
That was my problem. I felt they didn’t believe me when I said I couldn’t do something which generally brought an of course you can, you just need to try a bit harder. I got fed up with them saying ‘why aren’t you asleep’ when they found me reading at 2.00 am and simple requests to only fill the water jug half full because a full jug was too heavy for me to lif, wasn’t done. I also think they found it impossible to believe the person they saw on the ward was the same person I described when asked (as I frequently was) how I managed at home. I could only conclude that since they couldn’t or wouldn’t see it therefore I must be lying
Tot
hi Jane 0804 I think you have done well to care for your hubby, I know a lot of what you are going though . I have PD and soon with be 80 my hubby as always been my carer , bank-manger/ friend / partner and this year we have being married for 50 years , but he has heart condition also he is 3 years older than myself, Life is crule as we get older, Going back to paper work you can always ask at your council offices for some one to help you or Age concern. We had a lady from the coucil who help with our paperwork all the best, please keep posting we are all friends on here,
Hello thank you for your response I’m so sorry you’re going through this I know exactly what you’re feeling. You described what happened to my husband all the symptoms. He had Parkinson’s for 8yrs but the last 18months the symptoms you said started & he was diagnosed with levy body dementia. This was when he went downhill. He’s been in residential care now since June. He is well looked after, he’s not aware where he is he doesn’t ask just excepts it thank goodness. I’m the one finding thing’s difficult watching others do what I did. Getting to know him like I did. I didn’t think he’d settle, how wrong could I be. Again it’s me having to learn to live alone. I visit daily but he wouldn’t know if I didn’t. That’s hard but it’s the illness that’s taking over. I have to get on with it as you say no choice it’s happened to us & that’s it. Family & friends have been amazing so that helps so hopefully you have good support. I wish you well x
Hello Mary thank you for your response to my post. Your husband sounds amazing looking after you bless him I hope you remind him of that. Life is cruel & delivers some blows for sure. But your long marriage & friendship will see you through. Good luck take care x
Thank you for your reply Jane0804 please keep posting as it does help , by help I mean that most of us have been there /done it/got a tea shirt and if you want a rant and rave to get it out otf your system then do it on the site. None of us judge you are not along. ps don’t think we do not love you when we don’t answer straight away. sooner are later we will allways visit our site.