Carer really struggling

Hi Ive been a member on here for about 4 years but never had the courage to post without feeling embarrassed about how I feel when I’m not the one suffering with PD. My now husband was diagnosed just after we first met in 2013 so we have been living with PD for 7 years. On the day of diagnoses he told me to walk away if I wanted to as we had only been together a few months I replied No I promise to take care of you. Wow I didn’t realise how hard it was going to be. He is 64 and 15 years older than me.The last 3 years have been the worst as he has deteriorated quite rapidly in his time however whenever we see the specialist he seems to suddenly walk and talk ok and doesn’t tell the specialist the truth about his incapacity to do everyday things at home. He is still in denial and thinks he can do everything that he used to do. His personality has changed , mood swings depression and treats me like I’m his enemy. I can’t do anything right so Ive now given up trying. He is absolutely obsessed with sex which being so tired is not on my agenda so he has now started to message and chat and send pictures to old flames from about 30 years ago which really hurts but now I just turn a blind eye I’m too exhausted to care. I do everything for him on top of running a busy Bed and Breakfast. He wont join any clubs to socialise or meet new people he just relies on me for everything 24/7 and wont leave the house without me.I have not had a proper break from him since he was diagnosed as he wont accept any 3rd party help. I am just so frustrated angry and tired and my own health is suffering now, I feel trapped in a carer patient scenario with no downtime to myself. This is where the guilt and embarrassment comes in ,I feel ashamed at how selfish I sound when I know he is suffering too and I know he is frustrated that he can’t do what he used to be able to do, He wont talk about it and he wont help himself. He developed head drop 2 years ago which affects his mobility and balance even more and the physios gave up when he wouldn’t do the excercises to help. The frustration I am feeling now is raging and my temper is short and I’m scared of what I might do. Please if anyone can relate to my feelings please reply so I don’t feel alone in this situation.
Thanks for listening.x

Hi Estelle,

First of all, welcome to the Forums. I think you’ll find a warm and accepting community here, with lots of good advice, and no need to feel embarrassed. Secondly, you can call us on our free and confidential helpline at 0808 800 0303 or contact us directly at [email protected] for one-on-one help. We also understand you may just want to talk to someone about what you’re feeling, and we encourage you to reach out to the Samaritans, who you can reach by ringing 116 123 on any phone.

In addition to these immediate resources, we have lots of helpful advice on our website at Parkinsons.UK, including some information regarding sexuality and Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/sex-and-parkinsons. Just use the handy search bar to put in any topic you’d like more data on.

In the meantime, please don’t hesitate to share your concerns and struggles here with the wonderful Forum folks, who I think you will find to be an invaluable resource.

Absolute best wishes,
Jason
Moderation Team

My dear Estelle. You are not alone. In fact I’m in the same situation, Husband diagnosis since 2012. This last six months has been horrendous so many changes, yes and it’s all my fault. He is so resentful it’s unbelievable, I have done my upmost to make sure he is able to cope with the horrible changes to his once perfect life. He blames me for taking his freedom. He has become resentful,aggressive, and nasty.

Certainly not the man I admired. In fact. I’m beginning to hate myself, the more Parkinson’s progresses, well I won’t tell you how I feel today with Boris saying I have to put up with COVID until a Easter. This morning after another row. I had to get out. Having very little support from family.sometimes I feel life is not worth living as well.

But no doubt tomorrow will be another day and we have to overcome this absolutely horrible decease. Keep going, I’m with you and so are lots f others. God Bless.

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Hi Estelle, so pleased you’ve plucked up the courage to say something about your situation, albeit 4 years on !! For a start you are not being selfish at all, it is your husband, he obviously doesn’t appreciate you for who you are and what you do for him. Given that you also run a B & B makes it even worse !! He sounds very much like a Jekhyll & Hyde character, upon reflection, may be you should have walked away when you had the chance, I know it sounds harsh but he is not worthy of you. Your husband is not doing himself any favors with his attitude and by not talking with you about it or allowing third party persons to help like a Parkinsons Nurse, who, if he was amenable would probably be your best avenue to visit. I am aware of how PD affects people when diagnosed but they shouldn’t shut down or be in denial like your husband and accept help when it is offered. This is a great forum for obtaining help if only more PD sufferers would seek us out upon diagnosis. With this forum you are never alone, there is always someone around who can lend a friendly ear to listen to your problems be you a Carer or PD sufferer and may be help to ease your frustrations.

With me it is a role reversal as I am the one with PD but I try to help my wife out by doing daily chores like hoovering and taking out the rubbish to the bins and assist when it comes to brushing our cat, I would like to do more but i’m very limited with PD. I would like to go out more but with Covid this is not possible but we do go out to get a top up shop once a week to get the things that Tesco can’t provide. I like to play Flat Green Bowls but since the pandemic/shielding this hasn’t been possible plus i’ve had problems with an old hernia operation which has sidelined me !! Yes, I do frustrate my wife but I am trying, very trying at times she might say !! LOL

Take care, stay safe and look after yourself more, think of number one(yourself !!). Once again, you are never alone on here, if you want to vent more don’t be embarrassed, especially in your situation, we are all here to help.

Les

Hello Estelle
Even though you are effectively anonymous on the forum, it still takes courage to speak about yourself and your circumstances as you have done in your post. I hope the very act of doing so has helped a little. My circumstances are not yours and so there is little I can say that will help but I hope you feel better by the replies you have received.

I would like to make a general point that you may wish to consider. Many people underestimate the toll that being a carer takes. At the beginning most manage because the affected person, whatever the condition, isn’t too bad but the truth is it is arduous, exhausting and relentless and some folk just aren’t cut out for it and keep going out of a sense of duty or often, guilt. This is not I repeat not a criticism of you it is simply something I have become aware of when working. Second you might be surprised to know just how many people with all sorts of conditions that make life extremely difficult for their spouse/partner/carer but be sweetness and light and suddenly able to do whatever when out and about or with a doctor or whoever -this is quite often seen in people with dementia. This is all very well but as you have found it is difficult to get people to believe you.

The other thing that struck me when reading your post is that it is obviously a complex situation but it is all sort of mixed up into one. It may help to get some paper and over the course of a couple of weeks or a month, jot down whatever comes to mind. Don’t censor it or worry about sentences, it could be a word, something that happened, how you felt anything. Then let it lie for a few days before looking at it. You may be able to see patterns like your husband’s most difficult in the morning, or triggers that set him off, you may even spot the odd time when you were OK when together. Armed with this info you may be able to use certain things to your advantage eg wait until the afternoon to do something. It may also help you see the true reality of your situation and how much you are prepared to go on with things as they are. The very act of actively choosing to carry on can of itself help you cope. Finally and I appreciate this will seem impossible to you at the moment and I will be the first to admit it’s not easy, but you don’t have to be your husband’s carer, there’s no law that says just because you are married you must take that role. At the very least I would encourage you to get a carers assessment by the local council, which is about you and your needs and separate from those of your husband. And make use of resources like the help desk and carers uk - information is key. I have Parkinson’s and am well aware that this may account at least in part for his behaviour towards you but even if that is so, you too have rights should not have to accept all that he has thrown at you.
I don’t know what you will decide to do if anything, but maybe some of what I have written will help you see things a bit differently and help you decide.
If all you need to do is post on the forumto feel supported, as you will have seen your circumstances mirror that of others, then I hope having had the courage to do so once, you will do again. Do take care and I send love and a virtual hug. Whatever happens in the future never forget you are a person of worth and there is no shame in your feelings they are simply honest.

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Hello Estelle
I totally relate to your feelings and if you search the forum you’ll find similar writings from me of your situation. I am 65, my husband the PD sufferer 77 and diagnosed 12 years ago.
The urgent thing I would recommend is does he have a Parkinson’s nurse? Email them and/or his neurological team because overt sexual behaviour is often a side affect of some of the drugs and they can adjust/change these. You need to speak up and state ‘why can you not do that at home ‘ when he behaves differently at appointments. Yes I realise this might not feel comfortable or easy especially if you’re feeling low yourself. Whilst emailing the neurology team fully explain how his PD is on a daily basis not just the sexuality, make sure you tell them about your husbands depression too.
My husband does not/will not join any clubs etc either, however I am registered with my local County Council’s Carer’s support group who offer various resources.
On a more emotional side I totally empathise with you, it is very hard becoming more a carer than a wife/husband/partner/lover and changes both of you dramatically and I suspect in moments you have wished you had walked away - people do and they shouldn’t be judged by that. There are threads on the forum. I don’t have any answers other than take every opportunity you can for gaining support yourself in whatever form comes along. Please seek medical support sooner for yourself too. I totally understand this becomes harder to do as does actually finding the time out of what sounds like a non-stop day. If your GP has signed up to one of the online (Livi etc) services I thoroughly recommend them; for me this service has been far superior to that which my GP offers.
For the last 18 months my husband who contracted Sepsis has undergone 16 Orthopeadic procedures culminating in the latest on 3 November. He cannot stand nor walk and blames this entirely on the Sepsis and operations , pays no heed to Parkinson’s. It is me who reminds him and the Orthopeadic team that he has Parkinson’s but sadly no-one seems to be able to tell us is his disability is Orthopeadic or Parkinson’s or indeed. Combination of both snd I suspect they don’t know.
I had to give up work last year for caring snd I sorely miss it. Whilst I physically faced up to something having to change I sorely miss contact with my working colleagues and feeling like I had another reason to exist.
If you can afford to employ some help in the B&B and just go out for a walk anything to grab just an hour or two away in a day will help you. During the better weather months I managed at least a hour out each day to just walk, being outside - sadly Covid has also impacted everything social. I also find the little things help, baths rather than showers, music via headphones, TV comedy.
Lastly you are not being selfish/ I would suggest if you feel unable to speak to your husband to explain how your feeling then write him a letter. Yes he is the one with Parkinson’s snd yes what you say to him may hurt/impact him but he needs to understand you too are doing your very best.
Sending you empathy and strength - please seek support - Very Best Wishes Jane

Dear @Estelle71,

You are far from being alone in spirit, as I hope your visits to the forum tell you, though of course the physical aloneness that we all experience hundredfold due to Covid is making it lot more difficult to cope. You are not the only one, though it may be hard to imagine that other people are struggling in a similar way to you.
To cut to the chase rather than repeat what I’ve said on the forum before, please try and read Hugh Marriott’s book called “The Selfish Pig’s Guide to caring”. He cared for his much loved wife who had Huntingdon’s disease and tells it how it is as only someone who has been at the coal face could do, with humour but also much wisdom. He describes the difficulties one faces, warts and all ( including the stuff that most of us would never admit to) but also makes practical suggestions as to how to cope with them, whether the emotional side of things, or the practical issues of getting support, taking a break, navigating the world of organisational bureaucracy ( NHS, Social Care etc). The upshot of it is that one has to get on with it, armed with whatever info, support one can find, or not. He has a great chapter discussing why we are doing it in the first place and what the alternatives are. For many of us the choice not to do it does not seem to be a realistic one, but of course it is, and knowing that can help slightly when you choose to go on.
I daily remind myself of the fact that the mind can make a hell of a heaven or a heaven out of hell…taking that to mean that how I think about the situation I am in makes a huge difference to how I cope with it. I suspect a good therapist could fast forward the process of untangling the web of negative thinking that I can so easily get sucked into. That might clear the way for a calmer, more accepting approach to my limitations and to the physical and emotional challenges of being a full time carer for someone who bears so little relation now to the person I fell in love with and married 28 years ago. Hugh Marriott frequently touches on this aspect of things, including the “Is this it? …Will I have any kind of life left when I am no longer a carer?..Will I survive that long? What state will I be in by that time? “. The kind of questions that we can torture ourselves with but feel too ashamed to voice when our loved ones are the ones having to endure the condition itself.
The grief, sadness, anger, guilt, frustration one feels can get in the way of managing what has to be done ( including taking care of one’s own health). And you run a B and B on top of all that. What are you? …some kind of Super Wonder Woman?? “Yes”, I think is the answer to that, though I bet you don’t feel it.
It is hard being the one who has to take the initiative, be responsible, keep giving without any expectation of return. We can but try to become better people for it, not worse, by taking control of what we can, not letting it take control of us, and replenishing our resources by whatever means as often as we can. Please do.
Pippa x

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Thank you all who has taken time to reply to my post. It means so much that I’m not alone in this struggle. I have bought the book suggested and am learning a lot from it. I have taken on board alot of the advice you have given me and I’m trying to take timeout for myself which is hard as Malcolm also sees this as an opportunity to get out of the house so I can’t be alone. I’m even scared to suggest anything as I know the response. I just feel trapped as I feel guilty when I say I just want to be alone or give me some space etc
I will get there though and I know I have the support from this group with advice etc so thank you all again. I really feel the love. X

Hi there, I found this forum by accident and found answers to some of the issues affecting me. I really identify with Estelle. I feel as if I’m trapped in a house with a mad man who masquerades as one that is not.
For some time now my husband was showing Jekyll and Hyde symptoms long before he was diagnosed and I had no idea why. Living at home was and still is like walking on egg shells. I thought i was going off my head. He behaves as if I’m an enemy. He accuses me of all his own symptoms ie changing mood, aggressive tone and behaviour, shouting etc just like Estelle.
I joined a group and then thought I would write to one of his nurses. She replied that his behaviour is not from Parkinson’s, it’s because we have a disagreement. If that is normal behaviour then something must be wrong with me! The experiences here tell me I’m not alone in this and I struggle to understand why the nurse said what she did, which basically means it’s my fault. If she’s not trained or doesn’t know, why not consult with someone who is?
I have a similar problem to Esther in that he shows a nicer side to other people then revert to his usual miserable, spiteful + negative comments to me. I’m sure he doesn’t show this side at his consultations because he wants to impress them. If his medical team are trained + knowledgeable in what to expect from this illness, why do they take his word that he is ok? If we ask someone who has a mental illness if he thinks he is unwell, do we expect them to say no?
Why don’t they consult with the family so they can get a clear picture of the issues? I find it’s really difficult and stressful and have no idea how long this can continue.
I do try to take care of myself, exercise at home, go for short walks, stay in contact with friends but only someone with the same experiences can understand.

Hi Honi
Bless you.
It sounds like you are going through exactly the same as me so I know exactly how frustrated and angry you feel with this 2 sided personality. Maybe we can chat on here and support each other?
Bright blessings Estelle

Hi Honi and welcome to the forum, I posted on this topic early on, no doubt you have read it. What I am about to say is that what you describe has been playing out on Coronation Street with Geoff and Yasmeen in the Jekyll and Hyde sense in that Geoff was all nicey, nicey out and about but back inside the home he was a controlling brute. Naturally he got his comeuppance when he slipped off the roof to his death. Don’t get me wrong i’m not perfect by any means but I am on here, hopefully giving helpful advice to people. Stay strong and positive Honi, you’ve got a lot of friends on here who will leap to your defence in a blink of an eye. Take care and stay safe.

Les