Struggling


#1

I’m a Parkinson’s carer, who, selfish though it may sound, as I’m not suffering myself from this terrible disease, just feels at their wits’ end watching a disintegration before my very eyes. I’m convinced there needs to be a medication change, as for the past few weeks there has been a constant aggravation of symptoms alongside the emergence of new things. We’re doing our damnedest to arrange a review appointment, but it’s like banging your head against a brick wall (it sometimes feels like that literally and figuratively). And it’s the worst time of year as well.

It’s almost like being unmedicated - as if the levodopa’s having no impact at all apart from bringing on its side effects. 'Cause when it’s not the symptoms it’s all this drowsiness and sleep (something I get precious little of). And constipation, I mean?!?! We do all the good things for diet and fluid intake yet still there’s a problem with this blasted shit (excuse the pun).

Oh look, I’m just having a rant here - to vent. I’m new to this forum and am alone dealing with this situation - struggling, worrying, feeling like a failure, powerless to stop it. Maybe that’s because there’s a limit to everything, but still.

I’ve found a tonne of useful information on here and then some. Reading through some of you guys’ stories and what you experience, maybe our situation isn’t as bad in comparison. Personally, struggling though I am, I’m in awe of your mental strength and your capacity to endure. Maybe I just need more if myself.


#2

Hi Lrpjons
I understand your frustration and the feeling of struggling
But you are most definitely not a failure .
What you do is fantastic and your support matters even if it does feel like hitting your head against a brick wall.
Remember you are the one who is doing the fighting to get the best treatment you can .
And that just would not happen without you.
Therefore you are not to blame nor should you blame yourself it’s the system that’s at fault.
Also remember to look after yourself as it’s in no way selfish because without proper sleep ETC you won’t be able to deliver the care or fight the way you do right now.

What you do is extremely important .
Stay well and stay calm
And anyway this is the best place to let off steam and have a rant you are entitled to that much.
Tommy :pill::pill::pill:


#3

Hey, It’s hard to stay positive when things are just getting worse every day: really, no improvement or anything staying the same; just some new crap all the time. But I appreciate your words of encouragement, thank you. I don’t know which way to turn, but, well, get through each day and just react and deal with what comes my way. One day surely it’ll change…


#4

Hi,
Its difficult dealing with this disease whether you’re a carer or pd person. Especially for carers who have to watch a loved one struggling. I have PD but know it’s also difficult for my husband.
I wonder if there’s a carers group local to you that you could join for support?
Either way this forum is a great place for safely letting off steam and finding support


#5

Hi, Thanks for getting in touch. I’ve got the details of my local advisor, but there’s that much going on all the time (not just with the caring responsibilities) I haven’t got round to calling him. I have a fear I won’t be able to take advantage of whatever’s on offer, because at the moment it’s almost like I have to be here all the time to keep an eye on things, as, like I said before, I can see it getting worse. But without an urgent medication review it’s going to. I can’t understand why sometimes those who are meant to help vulnerable people but barriers in place to make it needlessly difficult for them.


#6

Hi Irpjons
Could I ask you is it a relative you are caring for?
Sorry you are feeling that everything is going against you.
Tommy :pill::pill:


#7

Hi @lrpjons,

I’m really sorry to hear that you are having such a hard time with all you are having to deal with. I can’t imagine how difficult it must be to find a moment to call your local advisor, but he can be the key to make things easier on yourself and the person you are caring for. I also wanted to remind you that, apart from the support you are getting from the forum community and the support and information your local advisor could offer, you can call our helpline for practical advice or emotional support. We are here for you and you can reach us on 0808 800 0303. We are normally open Monday-Friday: 9am-7pm, Saturday: 10am-2pm, but we have special opening times over the Christmas period that you can check out here: https://www.parkinsons.org.uk/news/living-well-parkinsons-christmas

As others have said, you are doing an amazing job and there is help available for you so you don’t have to face this alone.

Best wishes,
Mara
Moderation Team


#8

Hi, No it’s my partner. But one family never approved of the relationship and the other’s not interested in this. Close friends from before have gone by the wayside since we moved, buried ourselves in careers (before she left her job and this disaster struck), so the friends we have now are pretty superficial and not close enough to confide in about personal stuff. That’s why the feeling of loneliness really gets amplified at times. But I know even though you can’t keep it in all the time and have to get it all out as well, I can’t grumble too much all the time.


#9

You are not grumbling my friend .
I’m afraid it’s quite common for people to abandon us .
But on the bright side at least we find our true friends .
I don’t know why this happens maybe they think they will catch something eh?
Please reply to the moderator and seek the professional advice.
I’m truly aware of the isolation that can happen with family and friends.
It’s all on the forum for you to read if you want to .
On the insomnia thread and a topic called emotions.
But you will also find the people who have helped me we are known as the musketeers .All for one and one for all.
They would be only too happy to help you by just knowing that you are not alone.
But for your partner right now it’s the professionals she needs.
Thinking of you both
Tommy :pill::pill:


#10

Hi Irpjons…I am a carer and I can relate to everything you say…I am breaking my heart each day to watch the person I love and have been married to for 43 years,deteriorating before my eyes…we have 3 adult Sons and 3 Grandsons who all have busy lives and I could never tell them how things really are,they are in denial about their Dads PD as much as he is himself.
My DIL’s are all very close to their own families and dont really ask how things are or offer to help etc…I understand that as we are not their parents…they look after their own parents health needs etc.
I have a lot of friends but each of them have their own problems and I dont want to talk to them about how I feel…I am a very good listener to other peoples needs…
Somedays I do wonder what this is all about and how will I cope when things get worse along this PD journey?
Maybe its best to just take one day at a time…
Sending you my best wishes…x


#11

Irpjons I have pd. I am at mid stage. From someone with the disease your feelings IMO are totally normal. First off the person you are taking care is very lucky to have you. It is obvious you love them very much. I am not a doctor but i deal with constipation. In my case things slowly back up. What I have found is when that happens my Sinemet just doesn,t get absorbed. So my symptoms worsen. In America there is a product called Magnesium citrate. It is a liquid and inexpensive in the states. When all else fails I use it. Please ask your doctor before if you give it a go. My stool Is liquid about 6 hours later. Also My problem beside slow motility is my anal sphinter spasms. So the very loose stool passes much easier. I hope this helps. It sounds to me that you need advise as well as credit for your sacrifice as a care giver. To end up once My Small intestine is not conjested my sinemet gets to my brain. Hope it helps.


#12

But for your partner right now it’s the professionals she needs.

Oh hell yes!!! I would do anything for that to be right now, or tomorrow: I can but dream. I don’t know when that will be, but the longer it goes on the worse it gets and feels. That’s what’s so maddeningly frustrating about it all and compounds all the feelings around everything else.


#13

Hi there, Thanks for your message with the information and showing empathy with me. I appreciate it.


#14

Hi Babesbrown, I don’t know where to begin on the long list of awful things about PD, but that unpredictability of how it’s going to progress and impact: the terror’s gotta be right up there, it’s absolutely horrible.

I don’t know why for some folk criticising the NHS is tantamount to sacrilege. 'cause don’t get me wrong, I’ve come across many who go that extra mile and are really helpful, but have encountered likewise too many cases of peeps who don’t care - in more ways than one. Bureaucratic jobsworthy types who make you jump through hoops in the name of “process” (to suit them, not patients).


#15

Hi, Thanks for informing me, useful to know. At the moment she uses movicol, which is very effective but it’s needs to be increased. I’d like to think once the correct medication regimen’s in place it will calm down, but in the meantime it’s really frustrating 'cause it’s just another thing that’s not getting controlled like before.


#16

There’s always someone worse off doesn’t mean your concerns aren’t valid, if it helps to rant then rant away, this is a safe place to do so and we do understand. Hope it has helped a little bit.


#17

It does. The harsh, day-to-day realities of Parkinson’s may still be there but getting that pent-up emotion out in some healthy way or another has its uses, too.


#18

Sending you a big encouraging hug. It is v tough , in so many different ways. I know. Am in very similar situation to yours , with lack of sufficient sleep due to broken nights making it much harder to cope well during the day, esp now that dementia has raised its ugly head. Often feels like I have entered a parallel universe to the one most of my friends are living in . But noone’s situation is exactly the same . And people are at different stages along the path…
There are no easy answers, much as we would like to find them. Perhaps no answers at all, though lots of practical suggestions that might help ( or might not) . Carving some time out for yourself seems to be key but can be so very hard to do, for all kinds of reasons. Staying well hydrated and fed would be a good place to start. Achievable and helps. I generally fail on both accounts despite daily commitment. I suspect I need a “partner in crime” who can help with the motivation etc .
Warm regards,
Pippa


#19

Like you, I’m a carer and recognise your story.
There’s an excellent video here :


about non motor symptoms and quite a lot of information about managing them yourself, particularly constipation and hydration.
My PwP takes half a sachet of Laxido every day, you can buy it over the counter at the pharmacy, and that keeps things moving. To keep hydration going, we treat a glass of water as part of the medication, so every time she takes her pills she drinks the whole glass.
We’ve found it easier to get advice from the Parkinson’s specialist Nurse rather than have to wait for a routine appointment with the consultant, but not all areas have one.
Paul

#20

Hi, Everything you’ve put likewise resonates with me. My diet could be better - sometimes there’s a fair bit of things that aren’t good for you just for comfort food but I always try to get two litres of fluid in every day. Dementia setting in must be awful: double whammy of trouble, I empathise. So frustrating wanting answers - you think they’ve got to be out there - when they may not be any necessarily.