Wife/Carer struggling to cope

I apologise. This might be a long post but I need to vent and I’m hoping this is a safe space where other family members and/or carers might understand, and perhaps fellow people with Parkinson’s can offer insight.

We should be on holiday at the moment, for a week, but came home after just 3 nights because my husband was struggling with long periods of violent tremors, which seemed to come on just after he took his Co-Careldopa tablets and last almost to the next one. It was awful for him to experience and for me to helplessly watch. We thought it might be related to his change in medication: On the advice of his Neurology Consultant, he has, since January, had to gradually reduce his Ropinirole from 12mg to 8mg and then replace the Entacapone he was taking (alongside 4 of his 5 Co-Careldopa doses) with one nightly dose of Opicapone. Then a further 2mg reduction of the Ropinirole. This has been a struggle, I suspect as much psychologically as physiologically. This last week, he has also been asked to wear a symptom tracking device (PKG?) which may, or may not be related to the new drug but which he hated wearing (he refuses to wear a watch!) and probably was a constant, unwanted reminder of his PD.

Anyway, 3 days into our much needed, long awaited holiday, we abandoned ship and came home because I could tell he was only going to get worse if we didn’t. Fortunately, I’d made the decision to restrict any holidays to within an hours drive from home (after a nightmare journey to Yorkshire, last summer, but that’s another story!) so there we were: dinner finished cooking, eaten, washed up, packed up, cottage tidied (all by me as he just sat there) and home within 3 hours.

I’ve been feeling disappointed, frustrated and angry but also worried about the future - not least a fortnight holiday in July/August that I don’t know whether to cancel before the balance is payable (we have no cancellation insurance due to PD!) I’ve tried so hard not to share this with him because I don’t want to add guilt to the mix but he’s so much less shaky now we’re home (so obviously not drug related!) that it is difficult to maintain any sympathy, especially when he’s just told me that, as soon as he entered the cottage, he realised he wasn’t going to cope.

I’m afraid I lost my temper. Told him if he’d only shared that thought we might have been able to work through it - and I certainly wouldn’t have spent so long worrying that the new drug was doing more harm than good!

I understand that anxiety is a terrible thing and I feel for anyone who suffers with it but it is so hard to live with too. I feel like my whole life revolves around his PD. I retired early, at 60, from a job I (mostly) loved because he was home alone, no longer able to drive and was struggling to accept me working. I retired right into the middle of Lockdown but, when those restrictions lifted, our lives didn’t change because he rarely wants to go anywhere.

When we do go out - to the same, few places - it is always quite stressful because he can’t walk more than 100 yards or so without needing to sit down but blankly refuses to use the wheelchair we bought. I was so desperate for a change of scene!

In February, I was supposed to visit our daughter and family, in Norwich. It is a 3+ hour train journey that he no longer feels able to do (I’ve tried suggesting we book assistance, but he won’t) so the last few visits I have gone by myself (a pleasant respite, if I’m honest). This time, however, he had a bit of a meltdown at the mere thought of me going and being home on his own. He is still physically capable of looking after himself… at the moment… or I wouldn’t consider leaving him and I always make sure there are a selection of homemade meals in the freezer for him but, due to the medication change, I had some sympathy and cancelled my trip.

All this is to say; I can’t have a break without him and now, it seems, we can’t have a break together. I feel so trapped. Like my entire life revolves around his PD. Having been diagnosed with breast cancer, 12 years ago, and got through it, it feels such a waste to be not making the most of my life.

I’ve recently joined the U3a and have started going to some group meetings and making friends, which helps combat the sense of isolation and I swim once a week, but even these escapes sometimes have to be cancelled because he has an appointment or doesn’t seem well enough for me to leave him.

He says he’s grateful for all that I do, and I appreciate that, but he doesn’t understand how much PD affects my life too and I can’t complain to him about it as it’s not his fault and will only feel more guilty. I hate PD!! I’ve had 40 years living with his anxiety (although, recently, he announced he’s “never had mental health issues” despite being on antidepressants ever since I met him!!) and there have been times when I have wanted to leave but I committed to “in sickness and in health”, but lately I have found myself day dreaming about what life could be like… perhaps a flat near the sea - and my granddaughter - in Norfolk…?

Sorry, I did say it would be a long one. I feel better for getting that off my (lopsided) chest! Thank you.

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Good evening JCJ …You sure have a lot to put up with & you have my sympathy.

I have just started to type without knowing what I should say.

The first thing that has just come into my head is how about one of these battery operated mobility vehicles for him that old folk use to give them independence. I can understand why he would not want to be pushed in a wheelchair but this is something that would give him control & you would be able to go on longer walks together, say along a beech promenade.

I too have Parkinson’s, I am just in my 70’s & I struggle to walk far. Walking hurts the muscles in my legs & walking is no pleasure for me, so I can understand how your husband feels.

I live alone, which I quite like, as I am not making another person’s life miserable. I do
understand that if one partner has Parkinson’s you both have Parkinson’s, so to speak.

Clearly your husband needs an interest. Me I play Indoor Bowls 3-6 times a week. If I did not I would not leave my flat. I can drive & again without driving I would be a virtual prisoner in my small home. Bowling only costs me £4 a day & is not at all energetic.

I also have an hour a week in a gym at the local Conquest Hospital with another Parkinson’s sufferer. It is taken by the hospital’s Neurological Physiotherapy department. We get one to one assistance. There are some basic exercises I cannot do but I do the ones I can. I quite enjoy it & always feel better afterwards.

Are there any pursuits / interests / hobbies you can do together?

Clearly you cannot go on together as you are at present. Can you go back to work part-time?

Also you do know there is help for you in the community?

NHS England » Primary care networks.

They helped me a lot. I have more info if you are interested.

Best wishes
Steve2

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Hello JCJ
What a complicated and heartbreaking post, it’s no surprise that you don’t know if you are on your head or your heels. I think your last paragraph spoke volumes - if he has been on anti depressants and had anxiety problems throughout the time you have been together it is likely that the Parkinson’s has just complicated what wasn’t an easy circumstance anyway. Clearly you can’t go on like this, nor do you have to - you are entitled to a life too. May I suggest you ring the helpline 0808 800 0303 and speak to one of the advisers. They are neutral, experienced, have a lot of resources at their disposal and may be able to help you find a way forward; indeed just the act of speaking to someone uninvolved with you personally can help. My feeling is that at the moment you are just spinning, worrying about everything and not able to see what your priorities and options are and the helpline may be able to help you focus.
I don’t feel I am in a position to make much other comment on your post, there are just too many variables but I repeat, you are entitled to a life too and that is every bit as important as trying to meet your husband’s needs. You are not being disloyal, you have no need to feel guilty either - relationships are a two way street regardless of the Parkinson’s. It won’t be easy but I think it essential you put yourself first at least some of the time for the sake of your own mental health.
Sorry I can’t offer anything more constructive but I hope things work out for both of you one way or another.
Best wishes
Tot

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Thank you Steve2 and Tot for your replies and support. I was hoping someone here would “get it” because often it feels people are judging me when I complain; after all it’s not me with the condition!

As to your suggestions about hobbies/activities: he spends a lot of time taking photos of plants and odd things and enjoys tracing pictures, mainly of birds, and colouring them. This is an excellent mindfulness occupation (and I’m amazed how well he can do it with a tremor in his dominant hand!!) but is very solitary. He has been referred to a physiotherapist who gave him some exercises (which I don’t think he’s bothering to do and I’m loath to nag about that as well as his tablets!!) and has invited him to join a class at the hospital, for 8 weeks. He has declined to go because a) his meds change, b) the class is an hour long with nowhere to sit, c) it’s at a hospital 10 miles away with impossible parking at 10:45am (mornings are difficult so we try to make appointments in the afternoon, if possible) d) he had to give up driving several years ago so has to rely on me or taxis and, of course, e) excellent at making excuses!

He tried out mobility scooters in a shop in our local town but found them too unstable except for the ones that are large and 4-wheeled and need to be driven on the road. Anxiety was the main reason he had to stop driving and these things made him even more anxious as he didn’t feel safe. Steering with an anxiety-increased tremor was problematic.

I persuaded him to go with me to a Parkinson’s group a few years ago. We went once. He was so anxious he shook constantly and I was traumatised by seeing people - all men in this case - much further down the PD journey with far more severe needs, and their diminished wives/partners resigned to being carers. It wasn’t what either of us needed at that particular stage and has rather put us off!

He volunteers at a local library once a week: 3 blissful hours to myself (once I’ve done taxi duty). He has benefitted a lot from that but he’s not been going for several weeks, while he’s been changing his meds. The first week back went well but last week he phoned me to collect him after an hour. He is embarrassed by his tremor. I keep telling him that he is in a safe space there where people understand but…? Also, he falls out with people very easily. Thinks he can read people’s minds: one “funny look”…!

We were going swimming every week, which was great exercise and he usually felt better for it, but he finds it so difficult to dress afterwards (and refuses to let me help him in the disabled changing room!) and hasn’t wanted to come with me recently.

Goodness! Reading that back, no wonder I’m frazzled.

Thanks, guys, your understanding has made me feel better and I will look into the support options you suggested. I’m hoping I can find a way to have a little holiday by myself but an overnight carer seems rather extreme… and expensive? Perhaps the helpline can point me in the right direction.

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Good evening JCJ … I’m sure everyone here get’s it.

Taking a few of your points …

  1. Physio sessions at the hospital … I also need a chair to sit on & there are lots available. The sessions are very well worth doing.

  2. No parking at the hospital / impossible parking … I feel I have similar symptoms to your husband [he sounds a bit worse]. I applied for & got a Blue Badge which gives me free parking & I can use the many disabled parking bays at the hospital & elsewhere. Plus I can park for free on the beachfront.

  3. Swimming … why not get a warm jump suit for him & change at home after swimming.

  4. PCN … Do get yourself referred / refer yourself. Their representative Julie helped with my blue badge application & arranged for me to get the “Attendance Allowance” worth £72 a week, which is not means tested. I’m sure you would get money to help get you a deserved holiday.

For every problem there is a solution. We all need a little help.

Best of luck
Steve2

Hi there… I’m another wife/carer who is struggling at the moment too. My husband has been very independent and for the first 10 years of his PD managed really well - was always out and about, got himself to appointments and kept up with friends. Yes, there were falls and we slowly stopped doing some things we used to enjoy like the cinema and out to dinner because his back hurt.

The big change for us was when he saw a big detertoriation in the PD this January and then diagnosed with Parkinson’s Dementia. It has been very stressful.

Anyway, about a year ago, before he really needed help, I did convince him that we needed to get carers in - I started with ones just doing house work twice a week about a year ago… before he really needed help … this was to get him used to the idea. He was very resistant but I said I really needed help around the house and also needed to have the ability to go away if I needed to see my Mum in Canada. Anyway, I’m glad I did now because now we really need the help because it’s all too much really.

So I think reach out and find some support - ask social services for a care needs assessment for your husband and a carer needs assessment for you.

It does sound like holidays won’t be the same relaxing and enjoyable ones for you as a couple… perhaps cancel the one you have planned for the both of you and plan something for you… I think you have an adult child? Reach out to them and ask for their support maybe?

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Thanks again everyone.
I did get a blue badge for him - (what a humiliating process that was!! I’m glad he didn’t have to try to do it) and renewed it last year (shocked that I had to repeat the entire process. PD should entitle automatic renewal, if not the original Blue Badge?!)

However, this doesn’t address the hospital parking issue because every space - and every available corner/kerb - in the car parks - are full, usually with cars queueing for the disabled spaces, unless you hit the lunchtime sweet spot when there are no appointments so it’s quiet. As for beach front parking: Lucky you! Our hospital is an urban situation, (the furthest possible distance from the sea :cry:) with no nearby street parking except 30 mins or residents only. When I had to pick up his new drug prescription (goodness knows why Consultant couldn’t send it, electronically to our chemist!!), I parked half a mile away and walked. When I take him for appointments, I have to drop him off at the door and drive around, for up to half an hour, until someone vacates a space, hoping I can get to him before he’s called. Stressful.

I have been on the phone to try to get help with his present situation, as he’s having more or less constant panic attacks that are greatly exacerbating his PD symptoms. PD nurse “will call back but maybe not for a day or two”. Tried his consultant’s secretary but she’s on annual leave until tomorrow. It’s a 4 day weekend because of Easter bank holidays. Spoke to another neurology secretary who promised to try to get someone to contact us ASAP.

Although she stressed she wasn’t qualified to advise, she agreed with me that increasing the Ropinirole back to 8mg - as he was OK for the 2 weeks he was on that - might help and probably won’t make it worse. We’re going to try that tonight, and for the next few nights and cross everything because it’s all very scary at the moment. I know the GP, if we could even get one to see him, will be useless in this case.

I’ve spoken to him about getting help and he has agreed that I should arrange a needs assessment and a carers assessment as, even if things improve dramatically with the meds adjustment, we’re going to need help eventually and we should get something in place before it’s urgent. We are both very independent people so this is a big thing! Fortunately, he initiated the conversation by saying that one of the things that is stressing him at the moment is that I might leave him like his brother’s partner did when she couldn’t handle his mental health issues! Yep. Can’t say it hasn’t crossed my mind. More than a few times in the last 40+ years. However, “in sickness and in health” and he has said he realises I need to be happy too so onward and upward. I probably couldn’t live with the guilt anyway if I abandoned him just because it’s tough.

Ooh PN just called. She agrees going back up to 8mg Ropinirole should solve the problem but says to wait until she’s spoken to consultant, when she gets back from holiday, tomorrow. She’ll call us back. #£& that! We’re going to start tonight!

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Hello JCJ … You seem to have thought of everything & done everything you can.

Probably all I have left is for you to speak to the excellent Parkinson’s nurses here
on 0800 808 0303 when all else has been looked at.

I suppose there is Private Consultants …

Also maybe https://www.benenden.co.uk/ … I am a member, worth a try.

Then I guess you might relocate somewhere that suits your present / future needs.

Best of luck.
Steve2

You may be interested in reading this post recently posted on the forum. I think ir is not dissimilar to what you are asking and thought I would send a link in case you didn’t see it. I agree with Steve2 you seem to have things in hand and I hope you can get things sorted out to your satisfaction.
Best wishes
Tot

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Thanks @Tot, I was interested to read that post. Future proofing has been something on my mind, on and off, in the 11 years since he was diagnosed. Should we move to a single storey house, or at least have a downstairs bathroom installed? Should we move closer to family? etc etc. But we just bumbling along making the best of things and coping with each crisis as it arises.

I am uttering silent but heartfelt thanks to the developers of Ropinirole because just one night of being on 8mg instead of 6 (we didn’t wait for permission, which, thankfully, we did receive today. Phew!) has made a dramatic transformation. Honestly, from a shaking, panicking, frightened wreck who has kept me constantly on my toes back to what he was before we started the meds change. Hurrah. Obviously, he still has PD and one day, when/if these drugs stop working, we’ll be struggling again. But for today, we celebrate the improvement and I can rejoice in regaining a little more time for myself.

I wasn’t so sure about that decision at 4am, though, when he shouted for help because he couldn’t move and needed to get out of bed to get to the bathroom. I’ve not had to do that up until now so it made me fear we’d made a terrible mistake. He managed the bathroom part by himself, got back in bed and promptly went back to sleep. I didn’t!!

This improvement means, however, that there is little point in proceeding with a care needs assessment as he is capable, at the moment, of looking after himself as regards washing, dressing, taking meds etc. Instead, I’m planning to investigate arranging for someone to come for a couple of hours a week, perhaps just for a coffee and a chat initially, in the hope that they will be able to be here on those occasions I want to go to my groups and he’s feeling too wobbly to be on his own. Eventually, maybe, they could stay here overnight - or at least be on call nearby - so I can have a holiday or visit my daughter.

On which note, yes @mscoachbeth, I do have adult children - - who both suffer with mental health issues themselves - but our son has disowned us and our daughter lives a 4 hour drive away, with a wife and 5 year old child. She is the main earner in their household and does 50% of the child care. She would willingly book some of her limited annual leave to come and help but I see little enough of her/them as it is without going away whilst she is here!

Sorry. I’ve rambled on again when I really only came on to say that things have, at least for now, dramatically improved. Perhaps it might help others having difficulties with medication adjustments. I hope so.

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If I say that is good news I trust you will understand that I am not implying all is well. Re medication you will find as most of us do, that you develop a confidence in the meds that mean you are able to tweak it a bit to better suit what is happening at any given time and most consultants accept this. I’m not suggesting it is the thing to do when it seems the meds need to be changed, but you do get to recognise that a bit of a tweak here and there can make a difference. It’s not like a normal relationship with a GP or doctor where you go to see them, they give advice and/or prescription, you follow those instructions and in a few days start to feel better. It is much more a partnership and largely based on what you tell the consultant. The follow up letter after seeng my consultant usually includes ststements like ’ we have discussed and agreed …’ It was good to hear of the difference this minor change in his meds has made. Long may it be so.
Tot

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Hello JCJ
I too am wife and sole carer of my 13 years diagnosed husband with PD.
I feel your pain, frustration, anger and at times just dislike. I too gave up work early which I have lived to regret. I am now 68 and my husband 80. My husband is a fulltime wheelchair user (instigated by Sepsis calling not PD). We have had to cancel 2 holidays and lost money because of him being unwell and unable to go.
I am very reluctant to book anything atall indeed just last month we tried a 3 day get away to a Warners hotel with disabled rooms but came home the second day because it was too difficult getting in and falling out of bed, manoeuvring around and damaging the bedroom because it was poorly designed etc etc.
anxiety is horrible on its own, add in the Parkinsons anxiety and depression not a good recipe. You don’t say if your husband takes medication for that side of things ? It’s taken some toing and froing between parkinsons doctors and our GP. Parkinsons team want to increase his antidepressant and GP is reluctant, but we are still persevering.
I find it is the mental as well as physical grind that defeats me - having to make all the decisions and then physically do them and yes I feel resentful that I’m in this position.
I have the added responsibility of 2 x94 year old parents also requiring help. I spent easter Sunday in A&E with my father who had a mini stroke.
My husband has been reluctant (and so have I to a degree - money is a little tight) to bring in a carer but we are rapidly heading that way. I can’t physically do it all anymore.
As Tot and itgers have said the Parkinsons UK helpline is a great resource give them a call. Our local carers association ( not Parkinsons specific but a grneral charity for all carers) is bery good so I’d ssy seek out your local one, County Council and local library should have their details, as should your GP. Have you informed your GP that you are a carer if not do so it can be relevant for all sorts of treatment, not least the covid vaccinations etc.
Another major point I make to everyone is if you haven’t done so please apply for PIP or disability living allowance for your husband if he is pre retirement age, because he won’t be entitled to make a claim post retirement age. It is important because this is the only benefit that gives you entitlement to the car mobility scheme. We fell foul of this and suddenly having to but a wheelchair adapted vehicle has been a huge shock to say nothing of the huge expense.
Of course you yourself should be claiming carers allowance - this too will be stopped on e you reach state pension age, so claim it now and use to pay to visit your daughter.
It sounds a little heartless but I’ve found my husband although anxious when I go to visit our grandchildren for the day once he understands that I am going does cope absolutely fine and looks forward to me coming home.
Yes PD is absolutely horrid and as you say makes both of you live it.
Pleased to hear you swim and still go - I used to but lost the habit when the pandemic came. u3a sounds good, I do an online art class once a week , its important to have something for you.
All the very best and know you are not alone - Jane aka plus1

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Thank you @Plus1. I really appreciate your reply. I’m a bit busy at the moment so I’ll reply fully later.

Hopefully, we can support each other. It’s wonderful to have someone who understands. Take care. x

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I know exactly what you’re going through and in fact your life and mine seems to be running along the very same track.

We haven’t had a holiday since 2019

I like you did consider a short break somewhere not too far away but my husband won’t even go out for lunch when it has been arranged so I know it would be a lot of organising and anxiety for nothing.

Back in 2018 I had arranged a cruise for my 70th birthday.
We went to Southampton and stayed the night before but in the evening he said he was ill and as a result I had to cancel the cruise and we came all the way home
The terrible thing was he drove all the way back and when we arrived home said “I think I could have gone”
That’s the nearest I have come to leaving.

That was 6 years ago so I can only imagine what might happen now.

This disease seems to take away all their empathy.

People tell me to go and have a holiday and he would cope or to put him in respite .
I do go out a lot for days with friends but like you am so desperate for a proper break.

I am sorry you no longer feel you can leave him for a few days as he is having a “meltdown” and can understand how pleasant it must have been to go on your own and to be away from the responsibility

I like you had bowel cancer 12 years ago and came through that and again like you would like to live a life while I can. He cared for me exceptionally well during my illness.

But I do wonder if your husband and mine share the same kind of personalities as he has always been anxious about going places.

I almost think PD has given him a passport not to go anywhere and he is happy with that state of affairs.

Also I think lockdown was a terrible thing for anyone with anxiety and made matters worse .
I think the only thing we can do is keep getting out as much as possible on our own with friends

Sorry my reply is rather long as well and really no help to you as I have no answers either

Very best wishes to you
K

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Thank you too, @KK1, for replying. It is such a comfort to know there are people who “get it”. I feel rather ashamed at whingeing on here, where there are so many of you either actually suffering with this ******** disease or coping with far more serious caring roles.

My heart goes out to you, @Plus1, with elderly parents to worry about/care for as well. I sometimes realise that the horror of losing both parents too soon (Mum, suddenly, aged 51, of a heart attack. Dad, 20 years later, at 73 - heart condition brought on by alcoholism) does have its silver lining. I’ve also lost both sisters, at 49 and 60 respectively, with (different) cancers: All the more reason to want to LIVE myself now!!

Don’t get me wrong, I’m not a party animal or even particularly sociable myself: lockdown didn’t make that much difference to us, if I’m honest, although I do need some other human contact besides “him - almost permanently - indoors”. I missed that aspect of working but the U3a and Knit and Natter, when I can go to them, do go some way to replace it.

As to holidays: all we ever do is a self catering holiday in a cottage, static caravan or similar. Just somewhere different to be. He now rarely ventures further than 100yds from the accommodation but I have new places to explore and somewhere different to sit with my book and knitting. We used to camp - I suspect I loved it more than he did; he just enjoyed how cheap it was! - but, obviously that’s out of the question for him now. Most years, if possible, I’ve camped for 3 or 4 nights with my daughter: both of us enjoying escaping our responsibilities and spending time together. Such happy memories… but I don’t think we will be able to do it again because of childcare now GD is in school, not year-round nursery, as well as His PD.

Now that we’ve finished the meds adjustments and he seems to be more stable, I have decided, for the moment, not to cancel our fortnight, in a lakeside lodge, just half an hour away, in July/August. I’ve said he owes it to himself - and me! - to at least try. If necessary, we could use it like a beach hut and come home at night. Lol. I’d rather lose all the money having tried than forfeit half of it and wonder if we’d have been OK. Final payment isn’t due until May 5th so that plan might change.

Back in a bit… got to organise dinner: have to feed him regularly or all hell breaks loose with the the PD symptoms!!

Later:
Where was I? Oh yes, holidays. We’ve done a couple of coach trips, years ago, before PD. I loved them. It was worth having to be sociable at breakfast (argh!) and put up with a few too many people to have the driving done for me. Not to mention the catering! But He hated it. And now travel by coach is out of the question because of his need: frequent, sudden and urgent, to empty his bladder. (See also shorter car journeys!) One of the respite care suggestions was a coach holiday for both of us. Nope! Maybe one day, I’ll get to do some more coach trips…

Even before PD, holidays were a nightmare because he got so anxious beforehand. It’s been better since I’ve had to do all the driving. But he still blankly refuses to travel on Saturdays. Even though Fridays are busier!! Grrr!

In answer to your question, K, yes he does take antidepressants alongside his PD meds. He’s been on Amitriptyline since forever. Tried to come off it, by himself, years ago but felt so ill he is now psychologically dependent on it. It is no longer prescribed for anxiety but when Dr suggested changing it, he had an instant panic attack. Dr just increased dose. Then, later, added in Citalopram (?) Disaster!! Week of hideousness involving 2 ambulances (one of which ordered by Dr!) as it triggered tremor/panic/tremor/dangerously high heart rate cycle. Now he has Mirtazipine (spelling?) which works well (provided PD drugs are also working properly!) Definitely insist your GP listens to your neurologist’s advice. Quite frankly, I’m appalled he/she doesn’t!

When I last posted on here, we were celebrating a huge improvement after a 2mg increase in Ropinirole. However, the following day, Good Friday, was awful. I was close to phoning 111 because, when we tried the PD helpline, it was closed for B. Hol and I was terrified of having 4 days of tremory, panicky hell before we could access help. Fortunately, Saturday was better and he continued to - slowly (but he does everything slowly now :stuck_out_tongue:) improve.

Anyway, whilst at my wits end, I looked into getting carers allowance: started an online application but hit a brick wall when it said I couldn’t claim it unless he was receiving disability benefits. He isn’t and probably wouldn’t, even if he could be persuaded to apply, because he is receiving both a state pension and his local authority teacher’s pension. (My L. A. pension, however, is peanuts because I worked part-time for half my working life and retired 6 years early!)

I also found a website where I could refer myself for a carers assessment. I just wanted to do something proactive. Didn’t expect a response anytime soon, what with Easter and everything. Imagine my surprise when they rang me today! I have been referred to the Crest charity (Don’t know if it’s local or national) who will be in contact soon with more information. Apparently, I can claim up to 36 hours free support a year: someone who can come and sit with him so I can go out, which might, possibly, eventually, also enable a couple of days away. I won’t get too hopeful and/or excited though! It doesn’t matter that, now he’s much improved, we probably won’t need them: they’ll be there anytime I do need to access it. However, they can’t guarantee to come at a certain time unless booked in advance. Hmmm. Like taking cough meds before you start coughing?! :slight_smile:

I am registered as a carer with GP surgery, although I did it again, online, on Friday to be sure. I got my Flu and Covid jabs when he had his, just by saying I was his carer. I don’t know if they checked or took my word for it. (I’m 64 this month and he will be 73, three days later.)

Daughter, her wife and their 5 year old are making the trek over, this weekend. They have decided to stay at a hotel half an hour away so that if it’s too much - for any of us - they can retreat. How things are now, we could probably have coped having them stay here, as usual, but, in the circumstances, it’s perhaps for the best.

Dear me! Apologies. I have tried your patience by writing a book! I really appreciate your replies and understanding. :heart:

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Can I just make one general point because it crops up a lot and I think it isn’t well understood. It is true that the Carers Allowance stops when the State Pension is claimed, but the Carers Allowance is paid in place of salary/wages (the amount isn’t the issue here it is the reason it is awarded that this post covers). It stops when you claim State Pension because that becomes your source of income. It is exactly the same if ESA (Employment Support Alowance) is claimed. This benefit replaces wage/salary and it too stops when State Benefit is claimed. Both the Carer’s Allowance and ESA are paid in lieu of wages/salary and are replaced by the State Pension on reaching the age for that to be claimed.
Tot

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A quick one JCJ you can apply for attendance allowance for your husband its given to help meet additional costs associated with requiring additional help whether it is a family member or other providing that help such as assistance washing, dressing, sorting and administering medicines etc including driving taking to appointments etc. It isn’t means tested. This is not PIP. Attendance Allowance does clarify as a disability benefit which would enable you to claim carers allowance.

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Tot the reason it is stopped doesn’t make it right (imo) that it is stopped.

Not sayiing it’s right Plus1 only explaining how it is.
Tot

My heartfelt sympathies. You could be writing about my husband. Parkinsons victims - I can think of no other description - tend to desperately want to carry on the way they remember was normal. Don’t we all? But Parkinsons can bring depression, anxiety, paranoia, fear of noise, crowds, transport, the inability to cope with changes or anything new. And then there are delusions, hallucinations, memory problems - false memories, conflating past memories, dreams and things been on TV or that happened to somebody else. And the Parkinsons victim still wants to live a life as normal as possible. You’re just as much a victim of Parkinsons too. For trips out and about, think local, think small, think cancellable or delayable. leave at least a day in between to recover from any outing or appointment. My husband enjoyed trips to trusted coffee shops and pubs or the local riverside or just getting on a rural bus to sightsee and catch the next bus back. Do what he can do, not what he thinks he can do. It is frustrating for both of you. You’re both human. I found a lot of relief in pouring it all out in a diary, which incidentally charts what’s going on for you both. Sometimes yone or both of you will be angry. Be angry at Parkinsons. Just remember that in the end, the best care may not be at home by family