I meant to say. Hubby so bad this week I phoned his GP. Through the receptionist she said give him paracetamol and check his temperature! He has Parkinsons not flu!!!
Hey there Autumn lady
In a moment of possibly misguided humour, am tempted to ask what has stopped you from setting up an orphanage for homeless children in some war torn part of the world…surely you have had time and energy for that?
You know, however much we think we have reason to feel guilty, and whether we do or not, it does us no good…( unless we have done something truly bad in which case we might get locked up, or our OH removed to a place of safety…problem solved! ) in fact it makes our job even more difficult, so even if ( which I strongly doubt) you had a reason to feel guilty, don’t. Tell yourself that it is not helpful. So you shouted, were impatient, felt murderous , felt like walking out, did walk out for the sake of your sanity and safety, so what? You are human and you are still there and still doing your best which is good enough. It may not be the best ( what is…and who is in fact doing that?) but it is good enough and that is what matters. Really. Whatever other people look like on the outside, you can be sure they are feeling like you on the inside and doing / thinking all sorts that they would not want other people to know about.
Secondly, if you were being selfish, you would not be looking after your OH and putting your own health needs second ( or third or fourth). If you were being selfish , you would be ignoring his needs and what is right for him ( which for some people includes finding residential care) and you would be doing anything you can to make your life easier, not his. Even taking a break, as your carers’ support suggest , is not being selfish, it would be trying to make sure you can continue to look after your OH, ( unless you are planning a six month world cruise but somehow I doubt that comes into the equation) , even though you in your own right deserve a holiday, just like anyone else, carer or not. Most people take such things for granted and never question their “ right” or need to take a break. A week (or better two) ‘s holiday in the sun, by the sea, up a mountain, in a darkened room, whatever (we can but fantasise) might look “ selfish” to someone who is wholly ignorant about the life of a carer, but it is a matter of survival and making sure that tiredness does not turn into exhaustion then burnout and all the associated risk of harm that comes with that, to our own health as well as to our “ loved ones” ( dare I say not always very loveable). How does it benefit them if we go under? We owe it to them as much as to ourselves to have a break. It might be impossible to arrange that at the moment, but we can plan, start saving maybe, getting into the right mindset which will make it possible ( please read the relevant chapter in Hugh Marriott’s book for carers if you have any doubts about this whole issue).
I know it is a rather overworn metaphor, but we cannot help someone who is struggling in the water by getting in and struggling with them. I hate with a vengeance the fact that my OH has PD and PDD, I wish I could take it away and I feel so helpless in the face of it, and I know he cannot help ( most of the time) the things he does that drive me crazy, but the harsh reality is that he has it and I don’t ( though some might argue that I do “have” it, just in a different way to him) and it does neither of us any good if I get in the water with him, as it were. In practice that looks like taking a break (!) when I can , doing something for me that is unrelated to him or my caring role and not feeling guilty about that. And doing it for my sake because I deserve a life too. There is little enough opportunity for such things so why spoil those few minutes or hours even , feeling guilty and selfish, like when he is in bed, when it is possible?
As for me, I have good times and bad times…the latter when I seem so full of tears that I can barely function, and other times when I feel a little more in control and think, “ Hey, I can do this”. Have yet to work out how to hold onto the latter for longer than half an hour! I try to lower my expectations of what can be achieved during the day, but mostly fail at that, hence the frustration. I don’t have my own health problems to deal with thankfully ( except the obvious mental health ones) and I appreciate that it must be so tough for you to be battling with that too…all the more reason to prioritise you and your needs from time to time.
As I read your post. It fits my experience to a T Carers are the unsung heroes and with very little support. My partner is now hiding medication and so I have to monitor it like a Jailer, plus wake up every 2 hours at night for toilet duty. Sorry cannot be positives!,
Welcome @Rosielee, you are another of life’s unsung heroines. Your experience of your partner hiding his medication is something i’ve never come across before but then again you learn something different on here everyday. Obviously not very amusing to you but to me, reading your post, hit my funny bone, sorry. You do seem to have a frustrating time with him but you’re still hanging in there which is a credit to your resilience. Stay strong and stay SAFE !!
Meg I would say make sure you are not being taken advantage of? I am the sufferer of Parkinsons but my partner of 47 years went one better and developed Dementia before me so I am his career. He is very demanding though physically able his mental capacity makes him the meanest Bastard on God’s earth. As a sufferer of Parkinsons there are some things I cannot do so I make the best of it, I can,t put my socks on so I go without socks. Not the end of the world. He doesn’t think to bath for the last 5 years, sod it no skin off my nose? I struggle to keep myself clean I am not going to use my time slapping a hot flannel around his grubby bit,s. He has not left the house for the last 5 years and refuses to see or speak to anyone other than me, so what? He is in total denial and I leave him in his own little world. Going back to me and the message I want to send you is that whilst there are things I can,t do there is still a lot I can do, Your partner needs to lower his sights and expectations? Is there any reason why if he is up and in situ with his essentials about him you can’t just carry on your own life? Just trying to say make sure your (or his} standards are not too high. Things change with age and we can,t have what we have always had. Make sure he knows this. X
I have not yet introduced myself to the forum as i have so much to say and didnt know where to start and when i read your post it could have been writing this and i felt there is someone out there that feels the way i do its my husband and he has had it ten years i already have anxiety and its now shot through the rough and my husband doesnt give a s…t about me how i feel and what this has all done to me he is a different person and has become so selfish self centred incosiderate he has extreme behavior etc etc ,it would be nice if we lived in the same area we have a lot in common with the way we feel.hope you can reply Mpr
So sorry to hear about your experience of caring for your husband and his behaviour, hopefully you will find the support, insight and experience of other carers on the forum helpful.
Parkinson’s UK is here to help everyone affected by Parkinson’s, including partners and carers. Our Helpline and Local Adviser service can provide you with practical and emotional support, you can contact the helpline and adviser service on 0808 800 0303 or email us at: [email protected]
Whilst our face to face local group activities are suspended at the moment, these usually provide a place for partners and carers to meet up too. You can use the post code search on our Information and Support page to find your nearest groups.
There also services dedicated to supporting carers across the UK, and many are still providing telephone and other support during Covid-19. You can find details of your local carers support service on the Carers UK website here
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Thank you David is there any way to private message magzee18 it is over a year since she posted thank you mpr
If you click on a person’s profile name it should bring up a box with some options including a blue message button, see the screen capture below. This will allow you to send them a private message.
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Hi @Pippa and @autumnlady , I have read your posts with great interest and find myself getting quite teary and nodding at everything you say. My husband is 10 years into PD and although he hasn’t been formally diagnosed with dementia, it is pretty obvious that we are now looking at PDD. Since March, he’s been having daily hallucinations, together with confusion, difficulty understanding process and cognitive decline. His speech and language is sometimes non existent. Do you also have to deal with hallucinations? and if so, do you have any advice, as it seems to go hand in hand with anxiety, speech and movement. Covid hasn’t helped at all because I have gone from being able to work 3 days a week to full time carer. I don’t know what will happen when they ask me to go back to work!
nice to speak with you alison and thank you for replying to my post ,my husband doesnt have hallucinations but has paranoa and compulsions also punding its so hard when you dont know who this person is anymore as his personality has changed to a totally different person who has become so self obsessed and doesnt have any consideration for me yet before he would have done anything he could have.So much to say we have seperate rooms and we live together but its like some kind of well can you call it friendship ,he was diagnosed at 55 so never expected to be in this before even reaching retirement have to go now think hes checking up on me speak soon .take care mpr
Hi @AlisonT and welcome to the forums.
Sorry to hear about the increasing cognitive symptoms your husband is experiencing, we have information on Parkinson’s Dementia here, and also have a guide to coping with Hallucinations and Delusions here
We’ve also put together the following tips for family members on managing hallucinations;
- Stimulating activities can help distract someone away from their hallucination
- Encourage good sleep habits
- Consider their environment - ensure adequate lighting to decrease misinterpretations of shadows and removal/covering of objects from which hallucinations may emerge
- As far as possible, encourage a healthy lifestyle – for example regular eating and fluids and exercise
- It is important not to argue with the person experiencing the hallucination, e.g. denying what they areseeing as real. It is advised to acknowledge and distract rather than engage/join in.
- Try having a pre-agreed ‘code’ using familiar objects to re-orientate the person in case of family member/carer misidentification e.g. a specific ring, necklace etc
It can be more difficult to access healthcare services at the moment, but do contact his Parkinson’s clinic for a review, and we also have dedicated nurse advisers as part of our Helpline and Local Adviser service.
You should also be able to request a Care Needs Assessment for your husband from your local authority, along with an assessment of your needs as a Carer too (called a carer assessment). Our Helpline and Local Adviser service can help you identify who to contact where you live, and advise you through the process. You can also find details of your local carers support service on the Carers UK website here
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I am just going to stick to some practicalities…I hope it goes without saying that I am sorry to hear about what you are having to cope with
it is worth pushing for an assessment for dementia via your Gp who can refer to the memory clinic . If your OH gets a diagnosis and it is for a type of dementia that is “ treatable”, he could be prescribed medication that will help ( not cure of course) so the sooner that happens the better.
Parkinson’s UK has an info sheet re hallucinations and delusions which is worth reading. There is also a thread on this forum that you might find helpful. With my OH, he does have them, probably more often than I realise, but is not unduly bothered by them as yet. Mostly seeing people in the garden or around him. Having started off by gently telling him they are not actually there and him ruefully accepting that, I have continued with that approach and he accepts it. So far.
the Parkinson’s UK helpline is probably a good place to start to find out about what benefits you are entitled to, will depend on age ( e.g. Personal Independence Payments or Attendance Allowance) , Carer’s Allowance ( if you work less than a certain number of hours and earn less than whatever) , Council tax relief, etc. You are not going to find a pot of gold but every little can help .maybe you have done that already, but if not, grasp the nettle! It is do -able.
can you request carer’s leave or a career/ employment break from your employers? I appreciate that financially that may not be feasible for you, but an option if it is. Lockdown has made things very much more difficult in terms of day care, so no point getting too optimistic .
A lot to consider , all of which takes energy which may be in very short supply and it is easy to feel overwhelmed by it all. It is overwhelming but somehow we cope, a step at a time.
Do keep in touch,
This next sentence belongs to the one above re day care but I cannot edit the post to put it back where it belongs…
but there are probably day centres in your area ( Social services should have a list of them, including their own if they run any) which may re open at some point.
Thank you so much @Pippa. I will take your advice. So much to think about when it changes day by day.
Thank you David. I am so grateful. I will definitely keep in touch.
hi do you have to introduce yourself to get replies.i replied to a post and thought someone had read my reply to someone but i think i was mistaken and she was replying to someone else and i thanked someone for it but it was all a misunderstanding so do i need to do a proper introduction about myself as i have done two replies to people one magzee the other one think pippa or alison thanks David
Looking back on this thread (exhausted carer) it seems like you have introduced yourself.
But you really don’t have to, just simply join in the thread you happen to be reading and feel you have a question or anything else that you would like to share on the particular topic /post.
This post makes me incredibly sad. As a person with Parkinson’s I realise that people will be saying these things about me in the future which makes me wonder what the point is in making an effort to manage medication carefully now only to exist in a future where I am despised as a burden by those who used to value me.
I understand the frustration that unpaid carers feel and I understand the need to express feelings; the problem, as already expressed by many here, is that in a world where health and social care meets neither the needs of those who require it or those filling the gaps in provision, people living with the burden of Parkinson’s also live with the burden of knowing the imposition they are placing on the lives of those left caring for them and a sense of gratitude and dependency that is not healthy for their long-term emotional well-being any more than managing them is not healthy for the well-being of unpaid carers.
I have witnessed frustrated carers making sniping remarks to those dependent on them and stressing the need to be able to laugh about the situation irrespective of their partners feelings, and although it is an unpleasant subject, the degree of dependency and absolute inequality in terms of the balance of power within a relationship created in such situations can lead to behaviours that are destructive to all involved.
A friend of a friend whose husband has Parkinson’s recounts how she now detests and avoids him. She does not like to be in the same room as him and resents his dependency but she is doing her best to meet his physical needs, though does like to make him wait when she is particularly fed up with him. Her friends laud her as a saint for sticking with him while I find her behaviour very difficult to accept but in reality, she is neither a saint nor a bad person. She is just one of two people involved in an impossible situation.
Those left with the burden of caring for their partners or family members with Parkinson’s Disease are no more automatically Saints than those living with Parkinson’s are to blame for the burden they unwittingly place on their spouses or family members. All parties are victims of a system that no longer provides the support that it arguably should.
This website advises me as a person with Parkinson’s that there is much that I can do to manage my symptoms and promotes the power of positivity while at the same time, quite rightly, emphasises the need for carers to be able to express and share frustrations about the impact of Parkinson’s Disease on their lives. There is an imbalance in messages and tone of advice given to the different groups that Parkinson’s UK represents that I have never understood.
The current pandemic has only highlighted how people with Parkinson’s (as well as those with many other long-term health conditions) are perceived by the Health Service - services have been cut with no promise of reinstatement and no guarantees have been given that having Parkinson’s will not mean that people living with the condition can not access lifesaving care in the event of needing it at this time of crisis. The prospect of utilitarian principles being applied to the provision of healthcare linger in the background and people recount stories where these principles have been implemented in spite of claims that ‘difficult decisions’ have not had to be made.
I have never felt so worthless in my whole life.
Parkinson’s is crap whether you have it or know somebody who does. I guess the major difference is that people with Parkinson’s will never escape from it while those living with them have a glimmer of hope of doing so, though I genuinely understand that it probably doesn’t feel like this at times. I like to think that I will take myself out of the equation before I become the cause of the the type of of pain and anguish that everybody is describing, but only time will tell.
Of course if this is how family members feel, I think the chance of greater public understanding the condition is an impossibility. The truth is that having Parkinson’s does not tend to endear you to anybody, I read how some health professionals talk about people with Parkinson’s with a sinking heart. Having Parkinson’s tends to lead to a lonely and dependent existence alongside the constant wearing away of everything you are, every relationship you once had and everything you can do. There are no answers and no criticism is intended; it is just an incredibly sad situation all round.
I wholeheartedly concur with your observations, I’m afraid Parkinson’s patients as they are addressed by the medical professionals and clients as the preference of dwp health care personnel.
In the main rely on families for support given that the so called friends tend to retreat to the safety of their bunkers and console their conscience with the the occasional greeting card or text ending in “if there is anything you need just ask” knowing full well they won’t",maybe they believe it to be contagious or are genuinely busy with their own family issues however the longer it takes for them to call /text, the space between them & us becomes ultimately infinite.
This of course leaves the struggling families to bear the pressure of their own life’s and that of their relatives and sometimes they will clash through no fault of their own but simply not enough professional direction
Meg, I know exactly how you feel. My better half was diagnosed 17 years ago and now has dementia as well. I had a lovely birthday treat with my daughter yesterday afternoon but things went rapidly downhill once I get home, K wet so needed changing (4th wash of the day), had a totally unnecessary fall, was up at 1am for another change, and then falling asleep after carers got him up and dressed. Took him through to sitting room for a snooze so he could enjoy his breakfast later and managed to heave onto his relaxer chair but he stood up and insisted on getting on the sofa where he is now flat out. It will be a heave to get him off it as it is quite low and I’m stuck in the room in case he wakes up and tries to get off by myself. I have been steadily getting more bad-tempered with him and hate myself for being so unpleasant so now I just want to cry. I go through all the thoughts and emotions that you do and really it’s the disease I rail at but it’s K who gets it in the neck. I feel as though I am turning into some sort of harridan controlling his every move but his communication skills are so poor it makes it worse when he doesn’t tell me what it is he wants. Most of the time I cope well but when I’m tired it’s a different story. I hope it helps you to know other people feel the same, it certainly helps me.