Wife/Carer struggling to cope

Living with Parkinson's Carers, friends and family
21

Just want to add some support to previous points.

Look at getting some support. We had a carer who came in for an hour or so every weekday. Enabled me to get out for a bit, go fora run, do shopping or meet friends. My wife (PD diagnosed 5 years ago) improved following a meds tweak five weeks ago so we reduced the carers hours. Now suffering a relapse so we will increase them again as even just ten days of 24/7 PD is stressful!

We try to get away for a couple of days every 3 months. Always the same place which is a bit dull in some respects but it avoids the anxiety of a new place every time and is a change of scene.

Try the Parkinsons UK helpline. I’ve vented at them a few times when it has all got a bit much for me. Feel like I might call them agains actually as this relapse is full on. They don’t necessarily always provide answers but they get it!

if you can, try to get some counselling (if you can get away for an hour). I’ve done this too and found it really helpful to talk through my frustrations and guilt.

The next one is hard. There will be times when it might be a bit easier. Try to enjoy those times if you can. I’ve found this hard because I struggled to lose my awareness of the fact that the good times are temporary and there is a some bad sh1t waiting for us around the corner. But if you can just ‘be in the moment’, it will help.

22

Hi JCI
At our local group this week I met someone in your position who managed to get breaks for herself by paying for a professional carer to come in. I don’t know what it cost but a Parkinsons UK adviser may help or consult Citizen’s advice if you have one nearby.
Maybe your family need to see your predicament first hand as they may insist on you getting help.
Be kind to yourself so that you are able to cope; it’s not selfish, just sometimes hard to do. Good wishes

23

Thanks for all your replies and support. It means a lot and made me feel less isolated.

A brief update on our situation. Things are better. For the moment. After reducing the Ropinirole to stop the hallucinating, introducing Opicapone and then slightly increasing the Ropinirole back up, he was less shaky but still highly anxious. His wonderful PD nurse suggested increasing his anti depressant (Mirtazapine), with which the GP, fortunately, agreed. He’s still wobbly in the mornings but much improved and PDN is phoning again next week to see if we need to introduce any new PD meds as well. (Although options that don’t induce hallucinations are limited apparently.) So we’re much more optimistic.

He has even started swimming again. It’s a struggle to dress afterwards - and he refuses to use the family/disabled changing rooms so I can help him - but he’s persevering and we’ve been going twice a week! I suspect it’s partly because I was exasperated with him for not going to the PD exercise sessions at the hospital and therefore being discharged from physio… but whatever the reason, it’s a positive step!

I have been able to get out to my U3a groups and monthly lunch with a friend so I’m making the most of it while I can. However, when he was bad, I contacted the local care services and they have signed me up with CRESS: an emergency sitting service that can be booked to provide up to 36 free hours a year - and paid ones thereafter, I believe. When they spoke to me on the phone, my husband was already improving so I felt guilty for taking their time but I was reassured that the hours can “just sit there and be ready if and when needed”. That has made me feel so much less trapped. I should probably arrange a visit so he gets to know the carer(s), and they know our routines, before we’re desperate, but I haven’t broached the subject with him yet because, although he agreed, in principle, when he felt so bad, now he will insist he doesn’t need it!!

We decided not to cancel our 2 week summer holiday. I hope I don’t regret that but it’s only half an hour away from home, so we can come home for a day or 2 if necessary (our daughter says I should tell him he can come home but I’m staying there!)

So, at the moment, and we don’t know how long for, things are better.

Thanks again for all your help. It’s good to chat with people who understand.

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24

Good morning JCJ … delighted to hear a good news story.

Best wishes
Steve2

25

I so understand. I was able to get my husbabd away to Norfolk this year after 2 years of no holidays.

We also have a caravan in Lincolnshire its a tourer on a site but he wont go there now.

I get so stressed as need to have a holiday, it can be so difficult.

Sending love and hugs

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26

I feel like you are in a very similar position to me. My advice to you, on reading your post is ‘Get that break you need and so deserve. Don’t wait til you’re too ill from trying to do it all.’
It made me realise that it’s what I have to do, as I’m at breaking point.

27

Hello, I know not everyone will want to do this sort of holiday but it may be worth at least thinking about as a means of having a holiday that gives you both a break ie holidays with care support available. Here are two such companies.
Tot

28

Thank you for the suggestion

29

If you haven’t already, apply for carers allowance (even if they don’t give you money)it may allow for you to have additional NI contributions made for you by Government. If you were in a workplace where you were ‘contracted out’, that can make the difference between receiving full state pension or not.

30

Your story sounds very similar to mine
Depression, PD, wheelchair, library…etc. what I now find difficult is that, at times, he is losing his ability to speak clearly and loud enough for me to understand. I have now become much more direct with him, explaining what I can cope with and when. It seems to work but for me it was difficult to do to start with. Now we understand each other more and he is trying to help. But it is so fustrating to not be able to plan. New challenges appear every few weeks it seems and we have to cope. Your posts have reassured me that “I am not alone”.
Now…constipation…any thoughts ? :sweat_smile:

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31

Thank you all for your replies. It is both comforting and depressing to discover that there are so many of us “living with Parkinson’s” without actually having it ourselves!!

The holiday suggestions are great for those who like that sort of thing. My husband hated coach holidays when he was fit and able, is in denial that he is disabled and, personally, callous as it may be: I need a break from PD - and him! :stuck_out_tongue: - not to be surrounded by it and reminded that there is worse to come!!

I apologise for starting this thread and then going AWOL. The adjustment of his PD meds, especially the doubling of his antidepressant, Mirtazapine, have made things a lot better. We’re still not doing much, or going anywhere but he’s started swimming again and I have been able to get out to my groups. I have set up an account with CRESS, the local emergency carer service, so I know, when/if things get bad again, I can have a few hours away. I haven’t told him yet as he believes he doesn’t need carers and at the moment, he doesn’t.

For a while, we have managed to almost be “normal” (with the usual restrictions and planning around tablet times/inability to walk more than 100yds/incessant toilet requirements etc etc).

This is very fortunate because, on 13th June, the police came to our house to inform us that the body of our 39 year old son had been found. Suicide. We had not seen him for 9 years, or had any contact with him for 3 years - his choice: (I tried, several times to reach out but there’s only so much you can do before it becomes harassment?) This hasn’t made it any easier. We have been devastated. I have struggled to cope with my own grief never mind his PD! He has coped well. Too well. I don’t know if he’s numbed by all his meds or just that he hasn’t fully processed the horror of it all. I suspect that it’s the latter because the last two mornings he’s woken me up back in the state he was when I first posted on here. Just as I dared to think that, if he can cope with this, he can cope with me going away for a couple of days!!

He’s improved during the day but it’s a reminder that, one day, I’ll find a way of living around the grief but the PD is only going to get worse. :sob:

One of the hardest things is that I can’t have a proper conversation with him about any of it. Although he’s been assessed for dementia and had no problems with the memory tests, he doesn’t process information properly and doesn’t remember what’s been said. That’s so awful; having to keep going over harrowing information and repeating distressing discussions. :sob::sob:

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32

@Joleyn constipation! :flushed: Don’t get me started!! Despite taking lactulose, he often has 2 hour sessions in the bathroom followed by half an hour trying to unblock the loo (an expensive “guaranteed to flush everything away” model installed when we had the bathroom redone) This has been traumatic because anxiety/stress makes my stomach go the other way… and we have only one toilet :scream:

Apparently, apples are very helpful. Also prunes, wholegrains, nuts and other fruit. I try to encourage him to eat as many of these as possible but I’m not sure how helpful it is.

We’re having problems with urine incontinence now, too: can’t move fast enough - or at all - in the night/morning, to get to the bathroom and is too shaky to use the bottle he keeps in the bedroom. I’ve bought special urine cleaner and use it regularly on the bedroom carpet. Not something you expect to be doing when you promise “in sickness and in health”?! :flushed::joy:

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33

Just a thought re the urine issue. I’m not a fan of cathetars although they of course have their place but I have had urine incontinence problems for quite a long time - the reason is not consistent. Sometimes I can’t get to the bathroom in time, sometimes I can get there but don’t have time to adjust my clothing, sometimes I get no warning and ocasionally I manage to use the wc. The continence service would only give me light absorbency pads which would be no good to me as I sometimes flood. I now use high absorbency pull ups 24/7 and it has made such a difference. I can go out with confidence and not have to worry about needing the toilet, where they are and having accidents. It comes at a cost as the continence service say I don’t need pull-ups but then they are not living with the problem. they might think differently if they were. I get mine on a 6 weekly subscription which reduces the cost a bit and I pay for them out of my PIP. They take a bit of getting used to given children are toilet trained from a young age and this is hard to counter, but might be worth having a go to see if it reduces the anxiety, stress, accidents and impact on your quality of life that this particular problem can bring.
Tot

34

Thanks, Tot. I bought him some washable incontinence pants to use on car journeys and other times when it might be an issue. I notice he’s been using them more frequently: (all 4 pairs in the wash this week) so I’ve just ordered some more. I’m reluctant to use disposable ones, for environmental reasons, (we didn’t use disposable nappies, except on holiday!) but we’ll probably go down that route eventually.

35

I share your reluctance about the environment and disposables JCJ but I have to be practical/realistic and other options just won’t work for me. The name of the game is to simplify tasks etc so much as I don’t like and wish it were otherwise, it has to be disposables. I hope you can get something sorted .
Tot

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36

I’m so sorry for your loss.You have too much to deal with and I fully understand the need to have a break from at least some of your stress. I thought my carer’s need for a break was coming sooner than my husband’s need for care until I spoke with the newly appointed care manager. As the assessment took place, I realised just how much I was doing and dealing with, that the wife of a healthy person would not. I do hope you get some respite soon

37

It’s frustrating when it feels like everything revolves around managing Parkinson’s, and it’s hard to get a break or a bit of normalcy. Maybe looking into respite care or support groups for caregivers might help lighten the load a bit.

38

Hello,
I’ve just joined the forum and have skimmed through these posts. I am almost exactly where you are! And currently waiting for the district nurse to come and give my husband a second enema. Yesterday’s didn’t work. All your feelings are entirely normal under the circumstances. I share them!
More later … Somewhere, over the rainbow …

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