Urgent carer advice needed!!!

Hello thank you for accepting me onto this site. I am a carer for my husband and he was diagnosed with Parkinson’s and dementia with levy bodies about 2 years ago. He has been prescribed modapar 3 times per day. He also has rivastigmine to help with the hallucinations and paranoia. My issue is the last few days he hasn’t wanted to get up, saying he just doesn’t feel right. He seems to be extremely tired and unable to stop falling asleep. He absolutely refuses for me to contact a doctor. He says he will not see one. I am worried that he maybe getting worse or am I overthinking this. How do you know when it is progressing? The same as the dementia, again what should I look out for? Any advice would be very much appreciated. Thanks in advance.

Hi and welcome to our forum, @Westpest. This is an open and friendly space and I know our members will be along to chat with you and share experiences very soon.

Being a carer is a challenging job, one which takes courage and commitment. We have a lot of information that might prove useful to you at this link: Caring for someone with Parkinson's | Parkinson's UK. I’d encourage you to read this and see how it can help you.

You ask about the progress of Parkinson’s and while I can’t tell you exactly how things are going for your husband, we do know some of the most common expectations. You can read about this here: How does Parkinson's progress? | Parkinson's UK. Again, reading through this may help you gather your thoughts and then know how to speak to your husband’s healthcare team about your concerns.

Your husband is so lucky to have you at his side, caring for and about him. Do remember that it’s very important to take care of your own physical and mental health throughout this.

Very best wishes
:blue_heart: Janice
Forum Moderation Team

Hello there Westpest

A diagnosis of Parkinson’s with Lewy body dementia is a difficult to come to terms with especially for you as a carer. I can only comment on my experience with my husband who has moderate to severe Parkinson’s dementia.
My husband has started spending long periods asleep usually the whole morning when he cannot be roused or moved out of bed. If really forced he will become aggressive. I have been told this is a normal stage of his Parkinson’s and to just leave him and reinstate meds when he is awake.

I understand you are in a different scenario but I suspect you could do with some support from your GP or Parkinson’s Nurse. You could ask for some telephone support initially or maybe your husband needs a medication review. Alternatively contact your consultants secretary for advice.

I understand how difficult this must be for you but it can help to understand, especially when dealing with dementia, how terrifying it can be when you cannot organise your thoughts to think clearly. The irrational behaviours often stem from fear over the loss of control.

For all of us living with dementia the road ahead seems particularly fraught and everyone including health professionals, social services funding authorities, governments etc need to understand and just how hard, painful and exhausting it is. Hard won experience has taught me to shout loud for help. Now more than ever.

Much love to you

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My experience with a wife now is 68 and 6 years living with
Parkinsons is the weight of care falls squarely on the carer.
There is help and support available but no one I believe can give the love and daily assistance we are giving to our loved ones.
The changing attitudes and practical needs of my wife is a constant concern which challenges me.
Difficult to offer help because your husbands health appears a lot more serious.
But he may act less negative when another person was to visit and the worry of not asking for help/advice could be very hard on you.

Hello Westpest
You are indeed in a very difficult position if your husband is saying he doesn’t want you to contact a doctor and I can fully understand you would not, in all probability, feel comfortable going against his wishes.

This is what the NHS site states:

Can I speak to a GP about someone else’s health?

If you have consent, you can speak about a friend or relative’s health with their GP.

If you do not have consent

You can raise concerns about a friend or relative’s health with their GP without their consent, but because of patient confidentiality, the GP will not be able to discuss any details.

However you are clearly in need of help and in your shoes I would go to my GP for myself on the basis that caring for my husband is causing me stress and I don’t know what to do about it. That way you have an opportunity to explain what is happening and it’s impact on you, which is valid because as a carer you must look after your own health too, but you are approaching the problem from your perspective rather than that of your husband which may make you feel a bit more comfortable. At the same time your GP will be aware of what is happening at home and make some suggestions that hopefully will benefit both of you.

I also think it worth contacting your husband’s medical team and/or Parkinson’s Nurse to bring them up to date and see what they recommend and suggest you follow up the advice given by JaniceP. Hopefully something will come out of all that which will help you move forward.

You may well have this already but I am including this link in case not, it has a lot of information and may help

It is never easy to know how to respond to posts such as yours because not only are they heartbreaking to read on so many levels, but you also know that there is little you can offer that will change a difficult situation in any substantial way. What is clear from your post however is that you are doing your best to navigate your way through this difficult maze with the courage needed to acknowledge the situation is changing and taking steps to find a way forward; you have my utmost respect for that. No doubt there are days when it feels like you want to stop the world and get off, that it’s all too hard or you get angry at how this insidious condition has changed everything including the man you married and then you feel guilty at having such feelings. I just want to say all of the above is entirely normal, so don’t beat yourself up.

I have said this many times on the forum and I hope you can believe it because I think it is true of you. You can only do your best, you can do no more, and it is enough.

I hope you find a way to manage your current difficulties and if nothing else, the forum will be here to give you a safe place to let off steam if you need.

I send my best wishes to you both

All thank you so much for all your responses. They really are appreciated. I have reached out to an organisation called connecting carers and I have to say they are absolute lifesavers. They offer support and organise online craft sessions to allow peer support and some time away from caring. I have to admit that I do find that I feel extremely lonely. I want to protect my husband and definitely don’t want him to worry about me. Due to various reasons we have lost all our family with no chance of return. This also worries me significantly. I have noticed recently that my husband struggles with which remote control to use. He also gets extremely embarrassed about his tremours. This was evident last week when I took him out for lunch but as soon as someone sat at the table next to us he refused to eat anymore and wanted to leave immediately. I don’t feel that I am doing enough for him. Both yesterday and today have not been particularly good days and he has spent the majority of the time in bed. What really gets to me is I can see decorating needs doing and a couple of carpets need to be changed. I recently decorated the hallway myself but our kitchen diner is far too big. So I managed to get a decorator to do the kitchen but it cost us £1000.00. The carpets seem impossible as I have no one to help me to take furniture out of the rooms. I don’t know what other people do in these situations?

Dear yogalady

Honestly thank you for your reply to my recent post. Your words were very honest and helpful. The dementia with Lewy bodies is extremely frightening and something which I dread getting worse.

I do find the whole Parkinson’s and dementia thing to be very difficult to cope with. My husband is extremely stubborn and refuses for me to contact anyone to ask for advice on his ever changing condition. He tends to sleep in until late morning and then again after his 4.00pm tablets. Sometimes I feel he is better off in bed as at least he is safe there. Does your husband cope okay when he is up and about? How do you judge whether he has moderate or severe Parkinson’s?

I wish you all the best and again thank you

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Hi Tot
Thank you so much for your kind reply to my post. Also thank you so much for the link to the Lewy Body site. I had absolutely no idea that this existed. They have some really useful information so it’s really appreciated.

Your comments certainly helped me and suddenly I don’t feel so alone. It’s great to know I can reach out and there are so many caring and thoughtful people such as you that are willing to support and provide valuable information as well as kind words. Again thank you so much

A big virtual hug from me to you x

You are more than welcome Westpest and it’s lovely to hear that it has helped you a little.
You may well have sorted something out now but in case not, I intended to add a word about replacing your carpets at the end pf my post but then forgot. Most carpet fitters will move furniture when laying a new carpet although you may incur a charge for this. In your shoes I would take anything out of the room that I could move which will probably only leave a few heavier pieces they should be able to work with that.

Hello there Westpest

I am sorry for the delay in getting back to you.

Firstly it is necessary for both you and your husband to take on board you are his main carer and a very important part of his care team which include his consultant, GP and Parkinson’s specialist nurse. You do need to be registered at your GP surgery as his main carer.

It is important for you all to work and collaborate together to enable him to get the best possible care. Your husband will probably not be the best historian whereas you will be better and probably more honest.
In my experience I have never had any issue with talking to health professionals. . The only time he has been asked to give authorisation for me to speak on his behalf was when dealing with a hospital dept who did not know us. . I think you need to have an honest discussion with your husband about him trusting you to act in his best interests. You could also start to think about Powers of Attorney being put in place for finance and health. They can just sit there and will only be activated when necessary. Ours has been held up due to Covid and is still not back from being registered so it does seem to take forever.

With regards to the progression of both motor and non motor symptoms it can be useful to have some idea of his capabilities if only so you can understand where he is. You could ask for the Parkinson’s nurse to do the Montreal Cognitive Assessment test or it may have been done at diagnosis. However your husband might be highly resistant to this at the moment and there is something to be said for simply taking it as it comes as you will have good and bad days. Also many things affect cognition including mobility and exercise and being mentally stimulated. Try to learn diversionary tactics if he becomes difficult and change tack completely. I know how frustrating this can be.

Levy body/ Parkinson’s dementia is characterised by affecting executive functioning and orientation. Most people think dementia affects mainly memory but typically not in these cases. Memory loss tends to come later and it is only now several years down the line that it is starting to impact us. Again I am only talking in generalities. Executive functioning means the ability to organise your thoughts, the inability to do this means increasing frustration and huge fear over loss of control. This is probably behind his reluctance for you to contact your team for support.

When lewybody dementia is diagnosed at the same time as Parkinson’s it is hard to know how the physical constraints of Parkinson’s will progress as both motor and non motor symptoms are inextricably linked.

In you position I would expand your support network which I know you doing. Carers UK is an excellent place to start with many workshops etc for carers and also counselling services. The Alzheimer’s Society also deal with all sorts of dementia and also have many resources. If you ask your ParkinsonsSupport worker to visit she will have a lot of information for you. Do you have a Parkinson’s group near you who you could contact.?

Good practical and emotional support for you as his carer is really important. If you can, try not to look too far ahead and take things a day at a time. Also try to carve out some me time in your day and let your husband know why you are doing it.
Reflecting back I think the most difficult times are when the dementia is just starting to kick in and there is a huge question mark over what is normal behaviour and if like me you have a husband with a strong personality it can lead you to question your own sanity. Your relationship will start to change with the balance of power changing.

It’s funny I too went through a phase of having to have the house in order. Again I think one of the charities, Age Uk possibly,have a list of reliable builders carpet fitters odd job men who will do work for you and are used to working in homes where they will have to do a little more.

This is still relatively early days for you both to be coming to terms with such a difficult diagnosis so treat yourself gently. Your husbands care will never be perfect but if you bring on board all the various agencies who can help both of you, you will know you did the best you could, however things pan out.

Much love to you Westpest

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