What do I do?

Living with Parkinson's Carers, friends and family
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My last post (called “It’s getting worse folks”) set out the position about a month ago. Well since then it has deteriorated.

My wife’s bladder problems continued going to the toilet ten times a night which involved me having to get her out of bed and then showing her what to do when we got to the toilet most times because she didn’t know. she had three course of antibiotics for. UTI and two drugs for overactive bladder none of which made any real difference.

Because my wife is bigger than me (thanks PD drugs for putting the weight on), I have to use a bit of force to get her out of bed and help her to move. that led to her demanding me to get my sons outof bed at 12.15 am one night last week to accuse me of domestic abuse. Fortunately my lads know me better than that.

We were visited by a lady from a psychiatric-related unit a couple of weeks ago and they suggested an extended stay at a local hospital which has a multidisciplinary team which can look at all of the symptoms of brain related diseases, PD, Huntingdons etc. We both thought this was a good idea and we were looking forward to her admission last Thursday. the plan is that they wouldn’t assess over over a 6 week period and because she was being monitored 24/7 they could titrate drugs more easily and observe changes.

I went in to see her on Friday and she had invented this alternative reality where she thought she was in a hotel running murder mystery events. The son of the owners of the hotel had taken a liking to her room and wanted it. He had moved her clothes out of her room and brought in his own and he only got her clothes back when he put a spell on the room. By Saturday she wanted to come home and said that she didn’t want to stay there so this man could rape her. By yesterday she was simply furious with me for not taking her home and said that she hoped I could live with myself. I have explained that this is a hospital and that no one is spying on her, they simply want to observe her, so that they can get her treatment right. She thinks that I just want to leave her there so that I can get on with my work. She says that we went to a house yesterday with my lads where “ the mob”was there doing “mob things like talking about killing people”.

This has all come as a huge shock to me as I never expected any of this. the consultant has suggested that it might be a reaction to being admitted but its a pretty extreme reaction isn’t it?

I know that bringing her home would be the wrong thing to do because she needs to have those 24/7 observations if we are going to be able to treat the mental issues, the incontinence, the anxiety, the mobility issues, the confusion, her tremors, her drowsiness during the day. but I worry that if I don’t bring her home, her resentment will grow and, even if we do get her back, what sort of a marriage will we have?

I need to protect my lads too. My youngest is 18 and is going to Uni in three weeks time. It should be a really exciting time for him but it is being robbed by all of this drama. My eldest has had some mental health issues in the past and had a panic attack last week when his Mum accused his Dad of domestic abuse. If I bring her home whilst they are both here, then if she loses the “hotel reality” she has built, will our reality replace it, or will she invent something else potentially more damaging. What harm might that do to them? And what if the domestic abuse accusations start again because I’ll still need to help her move?

I probably need to give her time to adjust in this hospital, I think, and hope that she eventually sees that it is for the best that she stays there. I haven’t suggested that my lads visit as I am scared she will try to get them to help her leave and then resent them too if they don’t. they both think it is best for Mum to stay where she is.

The pressure I feel to make the “right” decision is immense and I fell like I might need some drugs to stop my brain from running at 100mph every day thinking about this stuff. I am exhausted by 8am every night just from thinking about it and I worry about what each daily hospital visit will bring, and we’re only 5 days in!

I’m going to call the helpline later but any other thoughts would be welcome!

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Hi Seansdad,
We’re so sorry to hear things have been so very difficult. You are right that you must protect your own mental health while you are taking care of others. Please do reach out to the helpline. If you don’t think you can wait until then to speak with someone, we always recommend The Samaritans. You can call them on 116 123, or email [email protected]. They are available 24 hours a day, 7 days a week. Alternatively, SHOUT is a free, confidential, text support service available 24 hours a day. Text SHOUT to 85258 to reach them. You can find even more ways to contact us here.
With our sincerest well-wishes,
Jason
Forum Moderator

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Hi Seans Dad I seems your wife might be suffering from delirium from the UTI ?? Or does she have a kidney infection rather than UTI worth asking as she doesnt seem to have responded to meds. I have expereinced this following my husbands 6 month stay in hospital following complex hip surgery. It is really distressing and I did have the whole “hotel” scenario She obviously needs to stay in hospital for the moment and then might well be eligible for chc funding for her care. Ask the hospital about this, it should be something that the hospital should address and she should not be discharged without assessment. Given your situation, unless there is a massive improvement it is not realistic to expect her to be cared for at home so put this worry to one side at the moment.

My husband is cared for at home with 24/7 care . He has his own annexe and sitting room with further room for live in carers who change now every 2/3 days. Recently the quality of care substantially dropped and I felt unable to cope. I was looking at specialised Brain injury units for him specialising in neuro conditions, The care homes although beautiful to look at did not have the quality of staff which is critical to his well being. I had a lot of professional input from medically qualified friends and family. Fortunately following talks with the specialist care agency we use we now have professionally experienced carers and things have changed substantially.
If you can try to take things one day at a time and see how things unfold. She may well improve. Make a conscious effort to look after yourself and your boys and try to maintain a sense of normality in the home. Your wife is safe and being cared for. Your priority is to look after yourself and your mental health to give you the strength to deal with whatever comes.

I more than many understand the conflicting emotions you will be experiencing. Message me if you feel you need more input and don’t hesitate to reach out for help. Much lovex

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Thanks for your replies.

A couple of days after my original post, I went back in to visit. My wife was still clinging on to the alternative view of life but I noticed a distinct change in her outlook. Again she said that she wanted to come home but something told me that she wanted to do this for the right reasons so I took a punt and said OK. We had to sign all sorts of disclaimers to get her out but off we went…

and guess what…

since then she has largely been better than she has been all year! anxiety has reduced, sleep has returned and I have even seen her smile. One week later, we have had ups and downs but mainly ups!

Of course, I’m not stupid enough to think that this will last forever but it gives us hope. Hope that f she goes down again she might recover. In our PD journey this is the first time that there has been an improvement, it has largely been a slow deterioration.

The $64000 question is of course, how has this happened. Well we don’t know but I speculate that it is a combination of a new anti depressant (venlofaxine instead of sertraline), and getting some overactive bladder medication (solefanecin) out of her system. I have read subsequently that this medication has caused delusions before in people who had never previously had that experience. We need to get to the bottom of it, of course. Anyway I thought I should round off my tale with some rare good news!

thanks also to Caroline on the helpline who was fab when I needed a friend!

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We’re so happy to hear Caroline was helpful, and able to make you feel a bit better! Oftentimes members are reluctant to call, and we understand the many reasons for it, so when a firsthand account like this can help us communicate the value of the helpline, it means so very much to us. We’d also like to say how heart-warmed we are that your mum is doing better. We admire your thoughtful and scientific-minded approach to her symptoms, and applaud your success!
With our continued warmest wishes,
Jason
Forum Moderator

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Oh Seans dad how lovely to hear some good news. I am so pleased for you. Hospital is definitely not a good place for pwp and I think you as her main carer and advocate are doing so well. Additionally all those involved in her care need to acknowledge you are the expert on your wife. All too often patients are judged inaccurately by care staff.

Here comes the nagging - You are the most important person in this scenario so make sure you have a good self care routine in place. You may not always be able to maintain it but if it slips (and it probably will) just acknowledge the fact and return to it when you can.

,Also shout out loud for help when you need it. Do not be afraid to stand your ground when dealing with stretched health care professionals.

Go well Sean’s Dad

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