Last night at 2.30 am I woke to find my husband in the bathroom about to have a shave. I pointed out the time and asked him to come back to bed. He then seemed to flip and said what was the point because he had seen another man in the bed with me. How could I do it when we had only been married one day (we have been married for 25 years with no infidelity by either of us). He then went on for about half an hour not talking any sense but in amongst all the incoherence he thought his life was in danger (from me? from my supposed lover?) He was also anxious about his money (not that we have got a lot - only the proceeds of sale of our house which we are soon to invest in buying another home). He thinks someone (me? two men who he can see but I can't?) are going to steal his money. His whole attitude to me was hostile and very upsetting. I tried to reassure him, cuddling him, stroking his hand and talking calmingly but all to no avail. He only calmed down when I agreed to have sex (not the first thing on my mind!) I eventually got about an hour's sleep. Today I am so tired and worried and frightened by the hostility. I never get an undisturbed night's sleep anyway as h. is up going to the toilet three or four times a night and very often can't settle afterwards.
Today h. is tired and sleeping much of the time. His only recollection of last night seems to be that he had a good time and can we repeat it tonight!!!
Something similar happened about ten days ago when he had gone to bed at 5.00 pm and around 7.00 pm I asked him to get up so that he wouldn't be awake all night. On that occasion his reaction was not quite so dramatic but he was hostile, accusing me of stealing his money and having another man.
We are waiting for an appointment with a consultant (we have recently moved to a new area). I have spoken to our PUK support worker and she has arranged for a PD nurse to ring me but she won't be able to do much until we have seen a consultant.
I'm just hoping something can be done to help us.
While these are obviously anxious days for you both, and it is so difficult to offer any advice with such little knowledge of all concerned.
Stress is one of the biggest factors at play in such circumstances and anxieties are often passed, shared to each other almost subconsiously. Things are never easy, especially as you have recently moved and are mid change of specialist consultants and a new environment.
The us, together bit is likely to be your strongest tower, so that any unwanted anxieties imagined cannot take root.
The worst thing when a mind maybe playing tricks, is the provision of new uncertainties that give rise to thinking space to feed the situation.
I hope you see the consultant soon.
Dearest Worrels, I think there is some good advice there from Beaureflects.
I think from my experience of my own h is that the parkinsons brings out fears and anxiety especially when there are hallucinations. Maybe his big fears are loosing you to someone else and loosing control of his money?
Hopefully these are one offs and if you can get something changed on the pill front with the consultant. I think these pills can increase libido as well as anxiety , I think a little tiny change of pill sometimes makes a big difference.
You sound like you are trying very hard to make this work. If the sex thing was a happy ending to anxiety then thats good, but if you feel it was an ordeal then maybe you should get the appointment with consultant sooner.
I have to say that I have given up trying to get my h to be alert during the day and sleep at night. I have read that its part of the parkinsons to be awake at night and I try my best to help him to get a good night's sleep if I can but otherwise I just go off to sleep in another room and ignore him. I think this is a marathon, not a sprint and if he needs me around for the duration, which he does , then I need to take time out sometimes and I dont let that make me feel guilty anymore I see it as being a competent carer.
I also try to think that I am now living with several different people, there is my husband who I have been married to for 38 yrs, then there is a very ancient old man who can hardly speak or move, then there is a little child who is sometimes scared and sometimes quite good fun, then there is a bossy man the sor that were around a lot in the 1950s but the women have trained them out of their behaviour now, then there is my best friend and wise advisor and I need to work our who is around at the moment and then in half an hour there may be someone different again!
Hope some of this helps. keep talking.
lots love sunray
Only to add; Even to the new second, everything is retrospective, and an interest in writing and or photography is often most helpful.
Thank you Andy and Sunray for your thoughtful and considered replies.
H has just gone to bed - I will follow in an hour or so when I have had a bit of time on my own to watch a favourite tv programme that H hates. Lets hope tonight is a better night.
Thank you once again.
An update. Things have been better the last few days. We still have the unwanted (by me) visitors but H is calmer and more cheerful and there has been no more hostility. Therefore I am more cheerful.
Daughter came to sit with him last night while I went out to choir rehearsal. I sang with a big choir in our old area and want to carry on singing. They were a very friendly bunch and so supportive even though they have only just met me.
Hi Worrals . I do the same thing when my husband goes to bed , have a quiet hour to myself .. It's very good that you are starting up with your choir apart from the company singing helps lift the mood .. I am on the committe of a club which I keep going , I realise it is important to have some me time even though I have found it difficult to keep it up on my own , we always went together .
Sounds good Worrels, the singing and time for yourself, I have to say that I have found from time to time there is some big parkinson incident for want of a better term and then I panic thinking this is how things are going to be but later to find its not the norm. The hallucinations can be the norm but usually manageable and there is an incident every so often and now when it happens I am training myself to just think this is impermanent this will pass. Hope that helps love Sun
It tells you something when I have to say my mum has had Parky's for 10 years now, and I'm still not sure if this kind of paranoia or hallucinations is down to Parky's or drugs. In my mum's case, it was the drugs, namely Mirapexin or interference from a painkiller. So it may be you need to alter medication or indeed it may come from the disease itself. I dunno, I never get any sense of what is what either from the professionals or even this website, which really ought to have a FAQ on it, to save me having to type out the same thing to every newcomer who has a question about hallucinations over the last few years (no offence the the Original Poster).
Ah Bless you it's so hard, my dad has had Parky's for 8 years (diagnosed) but we reckon he has had it longer, this behaviour that your Hubby is sporting is so mirror like to my Dad's in the beginning towards my mum the accusations of affairs and stealing money, it was a terrible time and unfortunately led to their divorce, my Dad divorced my Mum, but unfortunately he also became quite aggressive towards her too, so it was a huge worry and was probably best that they did go their separate ways, as I feared for my mum's safety. I wonder what medication your hubby is on, unfortunately things haven't improved for my Dad, he now hallucinates about the strangest things and he cannot be talked down, he really believes what he is seeing is real, more often than not these hallucinations contain a sexual element, which is sickening for him, but to a point whereby he smashed his neighbours car window because he was seeing awful things happening in the car, which led to him being arrested and sectioned sadly, I know it's hard for you, my twin sister and I are my dad's main carer's now and it is so hard for us, and frustrating too, because we have young children, and my sister has a husband, your not the only one out there who is experiencing this awful side to Parky's, so please don't feel alone, I do often wonder where it will all end, and I'm scared for the future, but I am taking solace in the respite his current stay in hospital is giving us, don't be afraid to ask for help, and try not to feel guilty either, being as you are no good to him if you are burnt out and at your wits end! We all need a break sometimes. xxx
Worrals. I am so sorry to hear your experience but it is very similar to how my husband behaved for a long time. I would be very interested to know what drugs your husband is on. My husband suffered from Obsessive Compulsive Disorder due to Mirapexin (Pramipexol. It caused him to gamble, overeat and to be hypersexual as well as being aggressive. It was awful and he too would accuse me of affairs with all and sundry - even fancying my sons friends. I couldn't even go to Sainsbury's without being accused of carrying on. He would have dreams and wake up and believe they were real and go mad at me. I could go on and on ...
However, he is now off the Mirapexin and I don't think he would mind if I told him I was going to Barbados tomorrow with George Clooney (I wish!). I am making a joke of it now but I know from experience it is FAR from funny. In fact it ended up making me very ill. Please see your neurologist and explain and discuss his medication. Good luck.
My husband use t suffer with bad dreams long before he was diagnosed or on medicataion. He gets them on and off now some night s worse than others .
I can hear him talking to someone he also sees figures . It doesnt seem to disturb him
His is on Sinemet Plus and CR at night . He is also on a rotigotine Patch .ans 25mg Amitriptyline at night
I had the same problem when my mother has a stroke . While in hospital and we visited she would come out and say the strangest things .. Seeing people, animals, trees , thought she had been to Japan .
When she was in the nursing home she thought I was having an affair with one of the female carers She told me she never thought I would do such a thing and was worried for my husband , kept calling his name ..
Sorry to hear that you have been having a hard time of it recently. My oh was diagnosed about a year ago and also has hallucinations sometimes. He sees a man standing at the end of the bed - which to be honest scared me silly the first time it happened. He also sometimes thinks that I am texting another man or that I have a man hidden downstairs (oh to have the energy!). We have found that things are worse when he is stressed by something else like work or pd itself.
I know it is no real help that so many people are going through the same thing but it made me feel better in the early days knowing that it wasn't just us.
Hope things get better
Thanks for all your comments and advice.
For the record, my husband has been on Sinemet plus (at one time 8 a day but now reduced to 5 a day) and also has Exelon patches. He has never had any other Parkinsons meds.
Since my original post he has seen a psychiatrist who diagnosed moderate Parkinsons dementia. His mental state goes up and down but is definitely worse than it was three months ago. Some days are better than others. The delusions are different - they seem to change subtly all the time. Last Sunday night was very bad - I didn't go to bed and ended up calling the out of hours doctor. I turned out he had a urine infection which was probably what triggered the episode. The next afternoon he fell in the bathroom and cut his head very badly (much blood!!). We ended up in A&E after an exciting ride in an ambulance with blue lights etc. and didn't get home until nearly midnight. Nights are hard - I don't get much sleep.
I have now arranged a once a week visit for H to a day centre which is a godsend and I also now have access to various professionals including a dementia advisor, nurse advisor at the GP surgery, CPN and a very sympathetic GP. I am also trying to arrange some residential respite.
I realised today, when H had gone off in the mini bus to the day centre, that I felt like 'me' again. Looking after H 24/7 has made me feel that I am losing my own identity but for that brief time today I was my own person again.
I have had some very bad moments over the last two months, usually at night when it is more difficult to talk to anyone else, but I am very resilient and so far am able to bounce back and remain cheerful most of the time. It's a case of 'one day at a time'.
Thank you all once again.