Hi
This is my first time visiting the forum and my first post. It has been insightful reading the various posts in all the different forums and has made me realise “actually, you know what, things aren’t as bad as they could be”.
My hubby was diagnosed with PD a couple of years ago and it has been life changing for us both. He is struggling coming to terms with it and I’m wondering if I am too. His symptoms are probably stage 1-2 I reckon so in the great scheme of things not too bad; we have a long journey ahead of us. Roprinorol hasn’t hit the spot and has too many side effects so is transitioning over to Sinemet. I’m hoping it will make a difference but I have a feeling my expectations are too high.
It’s very apparent that hubby can’t keep up with my energy and enthusiasm ( doesn’t help that I’m a rush-aholic) but his slowness and fatigue I find frustrating. He has asked me not to express my frustration to him but chat to my friends about them. I feel very sorry that he has been cursed with this awful disease and although it’s not me having to endure every day, it is my journey too, over which I have very little control. I get frustrated as he could do a lot more in the way of self help. I am wondering if my bucket of compassion is big enough? I did say I don’t think I’ll be able to keep my mouth shut if he drinks a can of coke in the evening and then complain of insomnia and sleeps the whole day, especially if I’m picking up the slack. He does try and stay active with DIY etc.
I try and stay positive for the kids even though they are young adults as I don’t want them to see any of the burden and I don’t want to keep whining to my friends either…
I’m also struggling with, when I look at him I see and think Parkinson’s rather than seeing the person.
Bottom line is, are these feelings natural as I am currently feeling very selfish. Please don’t judge me I’m feeling bad enough as it is. Hoping it’ll all settle down….
Would like to benefit from other people’s hindsight and any tips gratefully received. Please.
Hi Rosehip,
We just wanted to take a moment to say hello and welcome you to our community forum. We’re sorry to hear things are difficult of late, but we can assure you that you are not the only carer feeling this way, and we’re sure you’ll hear from our lovely forum members about this soon. In the meantime we would invite you to peruse our website, as there are various forms of literature there that might help, including archived forum discussions. You may want to start here, a popular section devoted to carers. We also have a free and confidential helpline, at 0808 800 0303, staffed with advisers who can help with a range of issues, and are happy just to listen when you need an ear. Please don’t hesitate to reach out to them, as they are friendly and supportive and a resource rich with knowledge and insight. Doubtless, our community can vouch for their helpfulness.
Wishing you and your hubby the best, and again, welcome.
Jason
Moderation Team
Your not selfish
You just want to keep calm and carry on as normal
I have had Parkinson’s for about 14 years now
I’m now 52 and keeping active and playing sports helps alot
I do have days when it’s very hard to get motivated, but I do something I love doing and when I get going it’s great
Hello Rosehip and welcome to the forum.
First and most important thing to say is that you are not being selfish. You are simply being honest about the situation you find yourself in and what you feel about it. Your view is as legitimate and valid as anyone else’s.
You are right when you wrote that you are not the one with Parkinson’s but that you are on the same journey. Indeed Parkinson’s affects everyone you know to some extent or another and the way it affects others changes over time as the condition progresses. Just as there is no right or wrong way to live with Parkinson’s only the way that is unique to the individual, so too is there no right or wrong way for anyone else involved with the person who has Parkinson’s.
Sadly what you are struggling with has no easy answers or simple solutions. The only certainty about your future is that Parkinson’s is a tough road. It can put tremendous strain on relationships and some break while others manage to stay the course but I think a lot depends on how the condition progresses and unless cognitive deficit is an issue, how the individual and those around him her view things.
I myself have Parkinson’s and to me the most important thing is staying positive. That doesn’t mean seeing things through rose coloured specs and all that encompasses. Rather I am honest with myself about my situation and what is important and that enables me to see my Parkinson’s as a continuum of my life, not something that came out of nowhere and I draw on other life experiences to manage it. It works for me. It might not always be so but I will cross that bridge when I come to it. Others including your husband will find a way that suits them but this can for some take a long time. You also have to take into account pre-morbid personality; we all know for eg that exercise is important in Parkinson’s but we don’t suddenly all develop a love of exercise because of our diagnosis and struggle with the same lack of motivation etc as the general population.
Ultimately what you do or don’t do about your situation is for you to decide. What I will say is that guilt, resentment, anger and all manner of negative influences can make decision making difficult and more importantly in my opinion make communication difficult. The bit that stands out most to me in what you have written is when you wonder if either of you have accepted his diagnosis. It may be helpful for you and your husband if he will agree, to seek counselling around this and the impact it may have. Perhaps have a word with your GP or maybe call the helpline for advice as Jason has suggested.
Finally I would like to make a general point that usually results in a carer saying I’m ignoring the emotional aspect of a relationship, the loyalty etc etc. They entirely miss the point which is quite simple ie not everyone is cut out to be a carer. Many take on the role when it is relatively easy with no understanding of the exhausting and relentless nature the caring role can become. They talk as if they don’t have a choice and indeed there is an unwritten assumption that a family member will indeed take this on. There is nothing in law however that says this is the case and you do have a choice not to continue with this role. I am not suggesting this would be an easy decision, only that there is choice and I think it is important that is known.
I hope that at least some of what I have written strikes a cord and helps. I hope too that both you and your husband find a way to live a bit more peaceably with Parkinson’s.
Best wishes
Tot
Wise words from Tot. I have early stage Parkinson’s and have been a carer for my spouse for 15 years and can totally understand your feelings.Being a carer, as you will know isn’t easy but there is support Help and advice on caring - Carers UK - you might like to check the website out. You can make contact with other carers who “get it” whereas friends without caring responsibilities may not. Try and make time for yourself to recharge your batteries. You need to look after yourself to be able to care for someone else. Don’t be too hard on yourself. Can recommend “The selfish pig’s guide to caring - how to cope with the emotional and practical aspects of caring for someone” by Hugh Marriott not that I am suggesting that you, I or any carer is a selfish pig! What you feel is not uncommon or selfish. Look after yourself and good luck!
Hello if you do Facebook you might like to look for the group Partners of People with Parkinson’s
It’s quite forthright and cuts no punches. You are not being selfish and I’d like to say it gets better , but it doesn’t. Depending on where your hwp goes for his neurological medications and reviews/consultations you might benefit from some counselling. My hwp is under Kings College London and had the benefit of some cognitive behavioural therapy that I was also part of. Plus other services such as Relate will see you both. Parkinson’s UK have a helpline too accessible for partners and carers. Good luck Jane
Absolutely not selfish and completely normal feelings! I’ve been with my boyfriend 13 years, he’s had PD about 25 years.
I often feel that I am hitting my head on a post trying to get him to do things that I think are helpful. I believe this is common as there is a sort of “hole” where many PWP don’t grasp the extent of it. The PD nurse explained this a few months ago, she described it as “a lack of insight”. Apparently this is also something people with dementia experience and there is medication being developed …
I tell myself he can’t help doing x, y z … Because of the illness but that doesn’t stop it being frustrating. During lockdown I was going out of my mind because every time we were leaving the house he couldn’t find his phone or wallet - neither of which he needed. This wasn’t anything new, the change was we were going out every time. He now, at last, keeps them in a bag .
He has duodopa delivered via a pump now, but before that I was “nagging” constantly to get him to take meds on time. Had to chunter about the pump for a good while too …
Sorry, I’ve gone on alot, but it is dreadful!
Hi @Rosehip, welcome to the forum. You’ve made the right choice by writing on this forum, this is a good sounding board & judging by the responses it was worth it. Don’t ever feel selfish because on here we’re all in the same boat, what ever is troubling you there’s always someone about to give you the benefit of their wisdom. You’re among friends, many of us with the disease but that doesn’t matter, be yourself, take care & stay safe.
Hi, I have come onto the forum tonight after a long absence and read your post which I could have written myself! You are perfectly normal! Those very same things brought me here tonight needing a bit of support. My hubby has had PD for 11years and each step-down in his abilities takes me right back to square one, having to learn how to deal with the new issues… and I am a retired healthcare professional - so know all the theory. Living with it is a whole new ball game! Carer support organisations are so busy and there is nothing in our area. Talking to friends helps, but they can get a bit tired of hearing the same things all the time. When we meet they always ask ‘How is (hubby)?’ I’d love someone to just ask ‘How are you?’ Trouble is, I might just tell them!!! In a funny sort of way, knowing I am not alone helps, though I am sorry you are having the same trials. Sending supportive thoughts. xx
Hi Gardener1, and how are you feeling tonight ?? I too would be pleased if people ask how I am! It sounds selfish to say it, but it does seem that I’m presumed to never feel ill or have bad days myself. Like you I’d be tempted to let it all out but I realise that sadly, people who aren’t personally affected by this wretched disease, can truly understand what it’s like to be the carer. So we continue to grit our teeth and get on with it all don’t we? Wishing you well. Jean
Thank you Jean - feeling a little calmer today and thoughts are not whirling around so much. Have had a very social day out with people and later having a visitor at home. It helps tremendously to get out, chat to folk and immerse in some normality. Xx
I can relate to your feelings entirely. My mother was diagnosed with Parkinson’s when I was around 4-5. In the early days there were a lot of friends & family around. Eventually carers were taken on in the mornings to help out, I was in high school, working at weekends and driving Mum to local appointments or clinics. She had always been bad at timekeeping, well before onset, and obviously worse after. I used to get frustrated that we were always turning up late, that she didn’t allow additional time to get her ready, in & out of buildings and cars and so on, I tried to be patient as much as I could, took offence on her behalf when people whispered as we passed them on the street, or glared back when they stared. But come nighttime, I would want to close my bedroom door and just shut all that out. Mum wanted my door open in case she called out in the night, or she had a fall, or such, all the while she had the radio on through out the night (Late night talk, debates, etc, very little music). I resented having to keep my door open, and hated that there was conversation constantly on in the background.
Now I find myself wishing I had been more patient with her, having been diagnosed myself, wishing that I could have conversations with her, not just about the condition, but about mundane things too. She passed away when I was still in my twenties and several years before I begun showing any symptoms.
I have never been that good at expressing my feelings verbally and, because of the above and other complications in life, found writing a lot more therapeutic. I wonder if this could help you in your situation. The letters don’t have to be to your husband, your children, or anyone. They don’t have to be coherent or chronological. They can just be stream of consciousness - whatever comes into your head goes down on the paper. It can be one sentence, one paragraph or several pages. If you feel able to discuss things with your husband, or.other family or friends, I would advocate that. It is something I have had to learn to do in the past couple of years, and I’m still not that great or comfortable with it. It can be daunting and intimidating, but I think we make it much harder for ourselves in our heads, and the reality is not so bad. But if not, maybe try the writing, maybe as a start, maybe as a longer term mechanism.
Hi Rosehip
Thank you for your post! You explain exactly how I feel.
My husband was diagnosed last August and we are both still coming to terms with it in many ways. In retrospect I can see the signs of Parkinsons were there before diagnosis and we had just put it down to ‘getting older’.I still feel guilty when I remember telling him to pick his feet up and stop shuffling! He is 79. I feel guilty for not picking up on it sooner.
I am perfectly willing and able to be his carer, but it can be frustrating and time consuming. Having been married for 44 years, having to suddenly help him get washed and dressed and help him in and out of bed isn’t something I like having to do. It has taken away his independence. Not being able to drive has also changed our way of life - I don’t and never have been able to drive.
I understand completely when you say " feel very sorry that he has been cursed with this awful disease and although it’s not me having to endure every day, it is my journey too, over which I have very little control." and “I’m also struggling with, when I look at him I see and think Parkinson’s rather than seeing the person.”
You are not alone! Stay positive and love the husband you know is there without the Parkinsons!
Anne xx
Let’s face it, Parkinson’s is selfish it cares not who you are. Ive been a regular here for some years. My hubby advanced stage Parkinson’s which is starting affect his mind. I am just getting over Covid tbh i think my being ill went right over his head. I also have suddenly developed chronic hip arthritis so its a bit blind leading the blind on his better days - few and far between now - as he helps me get up from chair. Aside of hating watching him struggle he has days of hyperactivity where he wants to rearrange the kitchen or remove things I store in spare room - he says to tidy it up! By putting in hall way or living room . He also has difficulty in comprehending, he watches news with me if i make a comment he asks what im talking about so i know he is not following the news. Or i might ask him to pass something near at hand to him and he just looks confused. All of this makes me highly resentful and I loathe myself for it, but i hope this doesn’t make me a bad person, just human, each day is new and thankfully I’m fairly upbeat.
Hi Autumnlady, just read your post and much of what you describe seems fairly typical of Parkinson’s traits. I have the ‘tidying up’ which ends up anything but and just makes more work for me so I get very annoyed with him!. I know he can’t help it but it can get you down on top of all the other worries we have to deal with on a daily basis. We do watch films and drama series’ on TV together and for the most part he seems to be able to keep up but there are times I can see he’s trying to fathom something out! But in fairness this is in the evening and he’s starting to get tired by then. I’ve also noticed an almost lack of empathy towards me if I’m not feeling good. But I know (hopefully!) that’s the PD and not him. I certainly don’t think you are a bad person! After all we wives and carers are only human and often have our own health issues to deal with and worry about too. May I ask how long your husband has had PD? My husband was diagnosed 6 years ago but like most, has probably had it a lot longer. I hope all goes well for you both going forward. Take care Jean
I loved your comments about your hubby not being able to find his wallet or bag.
I am the one with PD however at least twice a day my wife has her phone “stolen” or at least until she finds it, and finding her car keys is a mission worthy of Sherlock Holmes.
No problem about you"going on a lot" it is a great way of getting frustration out there.
one really good thing about apple phones is the "Find My"program. You put a tag on keys, handbag etc and the phone will then tell you where they are and lead you to it.
since fitting these we have not lost either - so it must work somehow!!
My husband was diagnosed 7 years ago at 70 but had the symptoms for at least 2 years before. He was on Sinemet and Pramipexole but this was changed to Stanek and Pramipexole a few months ago. He suffered a reaction to the Stanek after about 8 weeks - 10 days of diarrhoea- so was taken off this medication. His GP spoke to local Parkinson’s nurse and a new prescription was emailed for Sinemet and Opicapone.
He is now suffering from Dopamine Agonist Withdrawal (DAWS) . Anxiety, panic attacks, depression, suicidal ideation, dysphoria, agitation, drug cravings, fatigue, chest pains- the lot!
I’ve chased up the Parkinson nurse 3 times in the last week. I still don’t have an explanation as to why the pramipexole was suddenly stopped. It’s a living nightmare. I’m at the end of my tether- today I cried at the dentist’s when asked about him. I’ve got him to agree to see a Therapist next week to discuss coping mechanisms as he needs to speak to someone out with the family.
. He also has difficulty in comprehending, he watches news with me if i make a comment he asks what im talking about so i know he is not following the news. Or i might ask him to pass something near at hand to him and he just looks confused. All of this makes me highly resentful and I loathe myself for it, but i hope this doesn’t make me a bad person, just human, each day is new and thankfully I’m fairly upbeat.