Its getting worse folks

Living with Parkinson's Carers, friends and family
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My only post on the Forum was over three years ago shortly after my wife (now 58) was diagnosed.

Things has progressed at what I now realise was a relatively slow pace but this last two months, PD seems to have shifted into fifth gear.

My wife’s mobility has got worse, she now struggles to get out of bed without help and she has become confused. This morning, not for the first time, I helped her to the bathroom, there was silence for some time and when I asked if she was alright she said she didn’t know what to do. she was standing over the toliet, still dressed, not knowing how to go for a wee. I explained what she had to do and she asked to be left to it. there was a loud noise and she was on the floor as she had fallen over. We got her to her feet eventually.

Her PD was diagnosed after her doctor thought that her OCD over house security was a potential symptom. That has improved with medication but now I am concerned that she is becoming obsessed about going to the bathroom. She goes frequently during the night, less so during the day. that obviously disturbs sleep for both of us but when she wakes to go to the loo she is often irrational and confused. She has had all of the tests, investigations for bladder infections etc but nothing has been diagnosed yet.

Its been weeks since we were out of the house together for anything other than trips to the hospital or the doctors as my wife feels she needs to be somewhere in easy reach of the toilet. she calls our house her “nest” which is nice but I am starting to wonder is she is becoming slightly agoraphobic.

For me, I am self employed but I already feel anxious about leaving the house to see customers during the week. fortunately our two adult sons still live with us, but that won’t last forever (nor do I want it to, for their sakes.). I don’t want our lives to be dictated by PD symptoms but I am concerned that this is precisely what is happening. Although I am determined that PD won’t affect my sons lives as it has ours, I worry about how we will both get on when they don’t live here.

We have lots of NHS folk trying to help and whilst I am sure they mean well, no-one is taking an overview of the situation. I think that my wife’s mental health is worsening and that this is leading to the problems over the toilet and the confusion, both of which make her stressed and feeling low which then puts her in a bit of a downward spiral. I feel like I am the only person who can see what is going on here as my wife is a little in denial about it, and there’s no-one in the NHS team doing any “joined-up thinking”. I often say that we have lots of folk looking after us, but no-one caring!

I do try to be positive and recognise that she will have both good and bad days. At the moment though, the bad days are dreadful and the good days are barely tolerable. We had plans for our retirement but it feels like, at the moment, we are existing but not living.

I’m not expecting any of you to produce a ray of light for us. More of a rant from me to get this off my chest! If anyone has experienced a sudden downward turn like this though Id love to hear your story…

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Hi Seansdad,
We’re sorry to hear things have taken a turn for the worse for your wife, and your family. We are happy to hear you have support around you, but understand that things can nonetheless be a challenge. One thing is for certain: you are not alone in these feelings. You’re sure to hear from our forum community about their similar experiences, and in the meantime we wanted to be sure you were aware of our free and confidential helpline. These are highly trained and friendly advisers who can assist with finding mental health resources in your area, and that is just one of countless ways in which they can help. You can reach them at 0808 800 0303, and learn more about them here.
We hope this offers some relief, and we’re wishing you all our best,
Jason
Forum Moderator

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Hi sorry to hear your dilemma it’s hard I know I was diagnosed 12 months ago (age 68) and we have tried to stay positive but things are changing I have a few problems with the loo some days constipated the next not so good ???
I was running around the block 18 months ago then the tremor started then I was dragging my left leg meds have been increased and I am sleeping a bit better but the afternoon nap helps
I do hope you get the help you need and things will improve for you stay positive
Paul

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Heat does not help Parkinsons so it could be worsening your wifes symptoms. They may improve when the weather cools and in the meantime perhaps fans and a coolpad in the bed may help. If her symptoms are not inproved try and get her some respitr care.

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Wow,
Not a rant at all. Thank you so much for sharing and with such clarity. My father has recently been diagnosed (72 yrs) and an OCD previous diagnosis too, so the anxiety symptoms are ever-present. I share care of my father with his brother. I am in the UK and his brother is in the US. This may need to change eventually. However, I spent the summer with him 24/7. We had not been together for 6 months and I was shocked at his decline. We just had a bathroom issue very similar and a previous fall that haunts him constantly. But it was quite an event.
When he was finally diagnosed they said he was in stage 3. I think what I was observing was maybe this change. My Father had been drinking too much this confused my healthy observations of him, as I often thought hangovers were the cause. He is not drinking anymore. Thank God.
What I am doing now is keeping notes and a google doc of what I observe behaviorally so I can balance my rational brain with my emotional one. Also to clearly understand if I am seeing his anxiety or Parkinson’s. Your words are helpful and led to the free hotline info too. I will use it when I don’t know what to do indeed. Hang in there this is not easy. Take good care of yourself too!

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Hi Seansdad, I sympathise with you because I’m in the same predicament. My husband is 72 and was diagnosed six years ago, one year into retirement. Up to the last four months we’ve been able to go out and about but things have now deteriorated with him only able to walk 10 steps or so without needing to rest. So frustrating for us and it’s heartbreaking to see your love one not able to do things that we both enjoy. All we can do is support as much as possible, rest when we are able and enjoy the time that’s left. It’s hard but you are not alone. Sending you hugs :hugs:

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I’m sorry to hear about your wife’s worsening symptoms, it can be a very scary time for both the person with PD and for carers. Has your wife been tested for a urinary tract infection? I’m not a doctor but I know from personal experience that needing to go to the toilet a lot can sometimes be a symptom of a UTI. It can also cause confusion and make your PD symptoms worse and can go on for months if not treated. It may not be relevant in your wife’s situation but if she hasn’t been tested it may be worth getting it done.

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I’m back!

So one year on and we’re back to square one.

We haven’t had a good nights sleep since July 22 and my wife routinely gets up at 3am to have breakfast, staying up till 8am and sleeping the rest of the morning which effectively wrecks most of the day.

My Mum has recently been diagnosed with Alzheimer’s and I see some parallels in my wife’s confusion.

She wakes frequently through the night to go to the loo and usually needs a lot of guidance to do that. Sometimes she wakes after dreaming and continues to act out the dream which sometimes involves me being verbally abused. Easy to shake off once as I know it’s not her really but after repeated outbursts it starts to grind you down.

We argue a lot about what my wife sees but which I know doesn’t exist. She says I should open my mind!

Pretty fed up that almost 5 years post dx, we’re still struggling. Went out tonight for the first time in ages with my son. Should have been able to enjoy but it just made me realise what pd has done up both of us. It has pretty much consumed us. My wife’s main meds are levodopa and sertraline with a rotigotine patch for restless legs. Not sure how effective any if these are.

I’m worried that the only way I can get through this is to become emotionally detached so I act as a carer ( like a job) but not a husband. Not much of a life though and no basis for a marriage which has lasted 33 years so far….

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My heart goes out to you my hubby and I looked after my mum who had Alzheimer’s for 5/6 year then my hubby started having these dreams, first jumped out of bed and just ran full pelt into the wall. then he kicked me out of bed and went to see GP told me to get separated bedrooms, then he had me by the throat the following night he ripped off my nightie. by this time we had seen more GPs than the NHS had, the thing was if he had a dream and woke up he could go back to sleep at go back to the same dream. Then next nail in the head (for want of a better word) I was diagnosed with PD. One day I had to go and see the doctor at the hospital and the subject changed to about hubby’s dreams. in the room at the time was a young lady named Profess Baker her ears picked up when the dreams were mentioned straight away she said REM rapid eye movement. this is when you live and act your dreams out she gave him a px for Clonazepam, since then he will sleep though, with out dreaming. So after about 10 years and seeing a number of GP’s it was sorted out. The thing is REM is normally if you have PD but this Oct we have being married for 58 years so there’s hope for you yet, but please please go and try and sort out your wife’s dreams as it is not only her suffering but you also, as for life take the bull by the horns yes at the moment you don’t have much of a life but it is up to you, make time for your self do get help from any were e.g council/social workers / Parkinson’s UK don’t feel guilty if you have to leave your wife with some one else for a day. All work and no-play makes you a dull boy!!!

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ps yes REM is normally if you have PD but it is me that has PD but it is my hubby who has REM.