My HWP is into his 12th-14th year of diagnosis and as such he is getting worse but by bit. His decline is very noticable now in every way. He is very stubborn and will not admit in any way that he is deteriorating. We saw his neurologist a few months ago and to listen to him talk to the neurologist you would not have even thought he had PD. Every question asked of him he denied he suffered with,telling the neurologist he had no problems or issues at all…I sat there in shock! When we are at home living with him is totally different. He tells everyone he is “fine” when I obviously he isn’t. His swallowing is getting worse and when he is choking ,gagging and struggling to get his breath,which he does a lot now, his answer to my concerns are always “ it’s a think piece of bread” or “ that water went down the wrong hole" he will not admit there is an issue. If I say anything I am seen as nagging he will not recognise my valid concerns. He refuses to take drinks to his exercise classes as “I get a drink when I get home”…even though he has been told by his neurologist the need to drink,as he is at high risk of dehydration through heat and exercise….I am feeling totally alone in my support of my husband as no one will believe the difference in what he says and what is reality anymore.Friends have started to avoid us,stopped inviting us out to things etc.…we used to go to a PD group but stopped going as there is no actual support for the carers and there’s only so many times you can sit through a couple of hours talking about medication,constipation and satin bed sheets etc…when I tried to broach the issues about carers I am automatically told ‘ when you marry you marry for better or for worse” no one seems to want to think about other other side of this whole disease and the effects it has on the Families….the retirement plans we had which cannot happen now? Etc etc….so my question is today who does support the long term carers?? Because PD affects all of us as well as the person with the diagnosis……
Hello @Babesbrown, thank you for your post. We can see how much you care for your husband, and you’re entirely right, carers need support too. We understand that it must be hard to hear your husband not share with people and medical professionals the difficulties he is having, when you have seen him experiencing them and the decline at home. It can be difficult to admit that things are getting worse and that extra support is needed.
We know that it can be hard coming to terms with the changes supporting someone you care about with Parkinson’s can make to your life. It’s okay to feel a range of emotions and be frustrated that you can’t look forward to the retirement plans you had made together.
We’re here to help you as a long term carer too. We have information on what support is available and how to look after yourself on our website, which you might find helpful: Caring for someone with Parkinson's | Parkinson's UK
We’re also at the end of the phone to support and listen. You can call us for free and speak to our trained advisers, including specialist Parkinson’s nurses: 0808 800 0303. We are closed today, but back open tomorrow from 9 am to 6 pm. You don’t need to do this on your own.
We hope the community can also share their experiences as supporters and carers to help.
I’m so sorry to hear that you are feeling like this - I read your post knowing just how you are feeling - I have been so frustrated and angry for the same reasons as you - having the responsibility of dealing with a partner with PD on your own and then they put on what seems like a brave face (or not able to see / admit the reality) at appointments which means that nothing gets improved - I get that they will find it difficult to admit it is getting harder but it is also hard to support someone as they deal with it. I have even resorted to emailing the PD nurse confidentially and on one occasion they then made contact with my partner who then proceeded to play it down. Sometimes I feel as if someone is playing mind games with me - ie I am exaggerating, there is nothing to worry about, the PD is not making a big difference, but it really is and I know I am not making it up. I feel I am now a carer, not a partner but the recognition of that has been really sad and lonely (dealing with it on my own) but also making me realise that I have to create time and space just for me - without feeling guilty and that is hard. I guess a validation for me was my partner being awarded a disability benefit, so I can measure the level of need and feel that I am not imagining it. I think there has to be more for carers, or using forums to share. I hope you can find the strength to work through it all for yourself too.
Hello Babesbrown, my HWP was formally diagnosed 14 years ago after 3 years of repeated trips back & forth to GP with PD symptoms before referral to neurologist. I am pleased to say my husband’s progression/decline has/is slow but like you he now frequently has swallowing issues. He also has slow cognitive decline. He too very much likes to believe he doesn’t actually have PD. As I attend all appointments with him I now speak up and supply the reality to questions he evades. I too have emailed the neurology department prior to his appointment. My husband forgets how often he has encountered swallowing issues so answers best he can.
I also think Neurologists snd Parkinsons Nurses are well versed/trained in reading between the lines. My husband refuses to drink, saying it is impossible for him. I can’t and won’t attempt to force him plus experience of repeatedly reminding him snd it making no difference, means I no longer do this either. My husband has been impacted by getting Sepsis twice undergoing 17 operations to get a useable knee joint including 3 knee replacements through a 2 year period. He cannot stand nor consequently walk. He fully believes that if the orthopaedic team were able to surgically provide him with a functioning right knee that his left leg atrophied through Parkinsons would miraculously work again. He just does not accept his Parkinson’s has any impact on his lack of mobility.
With regard to support for carers, have you tried your local carers support group usually provided or tendered by your county council, information on them via your GO, local library snd/or local borough council. Parkinsons UK helpline is available to carers. Carers UK also have info. https://www.carersuk.org/
I’ve found too over the years friends have fallen by the wayside. I often feel we’ve nothing of worth to talk about or share, we go nowhere, no holidays etc. on the occasions that I do manage to get my husband to anything social his wheelchair often restricts places we can access.
I am so sorry to read about the problems you are experiencing. It must be so difficult to get the help and support you need if yr hubby refuses to admit there’s problem. His swallowing difficulties certainly sound concerning!
I am the carer of a mother with PD. I have found carer support from an organisation called Mobilise Online. They are online like this. Google them. If they are linked to your council then you can access 1:1 support. They have specific areas on their hub for different conditions. One area is for Parkinsons and neuro conditions. The hub is a great place to air concerns and get feedback from other carers. We also have specific zoom meetings on occasions.
I guess your husband is pension age. I surmise that you have been unable to apply for any relevant benefits eg attendance allowance, carers allowance because of your husband’s refusal to acknowledge his condition? You could probably do with a blue badge also. This is so sad.
I do hope you can find a way through this. Much love A
The phenomenon you are describing is often called “showtiming,” where the patient masks symptoms in front of professionals or strangers. Since you are in the UK, you should look into a formal Carer’s Assessment through your local council to get some practical support that isn’t just a social club. You also need to start documenting the swallowing issues and dehydration risks in a diary to hand directly to the neurologist next time so he can’t talk over you. See if your GP can refer you to a local respite service so you can get a break from the constant monitoring.
You have received some excellent responses which I hope have helped and given some ideas a to what you can perhaps do to help the situation. As a person who lives with Parkinson’s and has done so for several years, I thought I would throw in my tuppence worth (showing my age there heaven knows how much it would be in today’s momey.)
First, I doubt if your husband being deliberately difficult or obstructive although I can appreciate it is frustrating for you. Parkinson’s does bring some cognitive changes and even mild ones can have a subtantial impact. I know for example, that I can be unreasonable at times, much moreso than before my diagnosis; I can even be aware of it at the time it is happening but it is a very difficult thing to stop. The cognitive changes can affect a person in many ways and acting like there is nothing wrong or changed can be one of them. This may be because he simply doen’t see it and that might, in part, be because you are there helping him, it may hide the true severity or type of change that you can clearly see. That is not a criticism of you or anything you do to help your husband - it is a simple truth. Your support could perhaps mean that he has never had to deal with the full impact of the changes. It could be that the cognitive changes makes him react like many with dementia do ie sees the consultant as someone in a position of authority and reacts as he thinks he should, in his case by saying things he thinks the consultant wants to hear. It could be that he is aware of the changes in himself at home but can’t generalise them to the questions the consultant is asking so they may feel like hypothetical questions. It could be that he can no longer find the words to describe the changes so falls back on to tried and tested phrases ‘I’m fine thank you’ I haven’t noticed any changes….’ or whatever the phrase might be. It could also be, as your post suggest, that he is in denial. There are probably dozens more ‘it could be’s’ but I hope you get the gist.
I am very aware it is difficult to support someone with Parkinson’s but nor is it an easy one to live with. I would just ask that you don’t assume the person is being deliberately difficult. It is not easy to accept that one’s actions is the cause of so much distress, frustration, anger or whatever to the person who is only trying to do the best by him or her. It is at one and the same time, both a complex and simple truth it is not the person that gives rise to the difficulties a carer faces, it is the Parkinson’s that is the root cause - and all too often, there is little if anything, we who have Parkinson’s can do about the impact it has on anyone with a any connection to this condition
