Hi Meg, Iv only just joined this forum and so Iv only just read your post.
It could have been me that wrote your post. Exactly how feel and what’s happening here. I’m exhausted and pissed off with our/my life too. I know it’s no consolation but just letting you know there is another woman, probably thousands of people out there doing and going through exactly the same thing as us.
Hi Meg, Iv only just joined this forum and so Iv only just read your post.
Welcome to the Parkinson’s UK forum. I’m glad that you’ve been able to identify with other members, it’s important for you to know that you are not alone and we are here to provide you with the right support. There’s a lot of information and advice on this thread which I’m sure you’ll appreciate, we also have an entire section on our website dedicated to carers which has even more information. I believeI’ve already included the link on this thread, but I’ll copy it here again - https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons.
Lastly, we have a free and confidential helpline with a team of advisers that have a lot of experiencing carers like yourself so if you ever need to speak to someone beyond the forum, feel free to give us a call on 0808 800 0303 or email us at [email protected].
Do take care.
Forum Community Manager
Not sure if this is still current. I so empathise with this lady. My hub diagnosed around 10 years also. Last year we had terrible time with the patches causing OCD. We got some very murky months and now, just as things should be on the up he seems to be in a rapid decline. It is tiring, frustrating and downright bloody hard for him, yes and for me. I’m not well at the moment and everything is a struggle for me. He poor thing tries to help but makes it even more difficult as he always seems to be in front or behind me as I am trying so hard to get on with every day things. Today I lost all patience as I’m not feeling good, I told him to get out of the way as he is making everything harder. I try do hard to be patient but it is all so relentless. We used to go out, in the small window he used to have around early afternoon but now he seems to be I a 'bad day’s almost every day. Saw his neurologist yesterday and he had a good half hour for that. As soon as we left PK kicked in and he could barely stand.
No one can help I know, such a loathsome disease. I feel so bad at my lack of patience but it is all so trying - I hate what the illness had turned this intelligent man into. Sorry, need to vent is all.
I’m really sorry that you are going through such a stressful time at the moment. It sounds as if Parkinson’s is really taking its toll on both of you. It’s fantastic that you can vent your frustration on the forum, but I also wondered whether you and/or your husband have tried any local groups yet. They can provide great support through meetings, events and activities for you both. If you don’t know which one is your nearest one you can check it out here.
Also, please remember that we are here for you if you ever need to talk, get things off your chest, would like some information, advice or emotional support. You can reach us on 808 800 0303 (open Monday-Friday: 9am-7pm and Saturday: 10am-2pm) or on [email protected].
I have just come across “ The Selfish Pig”s Guide go Caring ( don’t be misled by the title) by Hugh Marriott who cared for his wife during the years she had Huntingdon’s disease. Written over 10 years ago now, it has to be the very best book of its kind and I cannot recommend it highly enough for anyone who finds themselves thrust into the role of a carer. I could go on about it for ever, but instead would just urge you to get a copy , keep it by the loo ( as Hugh suggests because when else do you have time to read anything? ) and read a couple of sentences or more when you can. He addresses all kinds of topics, thoughts and feelings , even the darkest and most unspeakable ones, with humour, humanity, realism, practicality. It should be given out on prescription !
Sorry, “ The Selfish Pig’s Guide to Caring”
Hey, Molly3 - me too. I was looking forward to our retirement time together. now I feel like my own life has ended.
Just popped onto the forum after a while absent and wanted to check in and see how you are doing, I can imagine, because I think our situations are very similar. What are you finding, if anything, helps?
My frustration bubbles beneath the surface pretty much all the time, despite the best of intentions to let it go, to accept what is happening and to think good thoughts, but it is so very hard. I miss my “ old” husband so much, and get so angry at the “ new “ one though most of the time he can’t help what he does., especially when it is dementia related.
Anyway, sending a big hug your way?
Just seen your post. I miss my old husband and I find this illness so confusing as there are brief spells where the old husband shines through and I am lulled into false awareness as PK takes over and old husband is gone again. Today, a grumpy husband is here, not that I blame him - who wouldn’t be grumpy with this disease, but is really hard on carers’ side too. Like you, Pippa, I try so hard to be patient but with dementia kicking in from time to time - how many times to answer same question in a day, how many times trying to convince someone they are wrong when they sincerely belief that you are the confused one to the point of telling family it is you that is confused.
Indeed…had a difficult day yesterday which left me wondering what I can put in place to make things easier - the old chestnut of a stair - gate for example - and then a slow start to this morning- and then, all of a sudden, he was himself again. I try to follow Hugh Marriott’s advice (in A Selfish Pig’s guide to Caring - the bible for all carers ) where he suggested adopting a detached, professional carer persona - whilst doing caring tasks . That makes so much sense even though it can be hard to switch into that mindset - because when I am doing them with my 'wife/partner/lover" hat on, I have very different hopes and expectations - which are unfair to OH because he cannot possibly meet them and it just ends in frustration and upset for me - which does neither of us any good.
No obvious time or place to express that grief for what has been and is being lost - and one doesn’t always feel the need to do that anyway - though I went for a walk with a close friend the other day and suddenly found myself unable to hold it in any longer and it did help in a strange way.
it is such a huge change from being one of an equal, mutually supportive partnership, to being the person who has to run the show single handedly and on behalf of someone else - I wonder if we will ever get the hang of it. It is so very different to everything we expected, wanted and hoped for.
How are you doing autumnlady.? It is the early hours and I came on the forum looking for some support, and find it in the somewhat back to front way of knowing that people like you are having a similar time of it, which helps me feel less alone, less crazy. Even though I think I am going crazy and showing signs of dementia myself! How does one distinguish between stress based cognitive impairment and the actual thing? Felt very overwhelmed yesterday by ordinary stuff ( the need for car insurance / breakdown cover etc renewal) and irrational fears about the future. I don’t feel able to off load on friends who are in a very different space in their lives and who might keep their distance even more if they think that is what they will be subjected to.
Sometimes it feels like I am trying to cling onto my/ our old life, like a child clinging to a parent whilst a teacher is trying to prise them off, and only when I let go and go with the flow will I feel more able to cope. But it is a lot to give up and a huge wall of grief to get through .
Hello Pippa & sorry I am responding 9 days too late. Just to say I can relate to all of that - feeling overwhelmed by ordinary things like car insurance, (ir)rational fears for the future and at times wondering about my own cognitive state! You are much further along this journey than we are & I really hope I have the resilience you have shown. A close friend whose much loved husband died 3 years ago of cancer has been a huge support recognising as few others can our shared feelings of grief for what we have both lost, however different the circumstances. Try to take care of yourself too.
Pippa - hi and sorry to hear of your troubles - this Parkinsons is so unforgiving- hubby seeming crazier by the day and today he screamed at and ran at me. No big argument just a few questions. I am not allowed to ask him what he is doing or why. Much to difficult to talk right now as I so upset. I’d just booked a short break for us in April, but now realise it was a bad mistake. Perversely his dementia is worse of his ‘better’ physical days. Not sure I can do this much more. I’ve been unwell myself over last year. I feel he is dragging me down. Sorry, I’d like to give more hope but PK doesn’t get better. Plus I suspect he is overprescribing again - becoming quite psychotic. I’m speaking to Drs tomorrow. Good night and God Bless x
@autumnlady, You really have gone through the ringer of late you poor thing. Good luck with the Doctors, hoping by now you’ve got some answers. Chin up and do the best you can.
To all exhausted carer’s, my heart goes out to you. My hubby was diagnosed 12 years ago and he’s been lucky not to have deteriorated as quickly as some other PWP we know. Physically, he can still look after himself but I worry about his mental/psychological state. He has changed, like so many of you have noticed in your partners. He used to get depressed and apologise tearfully for how Parkinson’s was affecting him and us. Antidepressants (Fluoxetine) have helped but over the past few years he’s become very self-involved and seems to have lost all empathy. He sleeps poorly and I’m sure this is partly to blame but his psychological state is making things very difficult for us. He seems addicted to his electronic devices and spends most of his time in his room on his computer. At dinner or while we’re in the car or shopping he’ll be on his phone or pad and gets snippy when I ask him to put it away. We used to chat away all the time but now we hardly talk and never have proper conversations.
We live out in the country, two miles from the nearest bus stop, a wonderful place when we were younger and fitter. Now we’re both retired and my kids (his step kids), who live 2 and 3.5 hours drive away, have given us four wonderful grandkids, so I feel isolated and totally reliant on the car. Hubby absolutely refuses to even think about moving closer to family and a community, and it’s breaking my heart. I worry about the future. If I become ill and unable to drive and look after house the garden, not to mention caring for hubby, how can I come to terms with staying here and rarely seeing my family? (he doesn’t think of them as his family).
Does anybody know if there’s anyone out there who can help me/us?
Hi Caramel, welcome to the community.
Very sorry to hear about the difficulties you and your husband are experiencing. Our website has lots of information and advice on the types of support available to you, which you may find useful: https://www.parkinsons.org.uk/information-and-support/support-you
You can also search for local support groups in your area here: https://www.parkinsons.org.uk/information-and-support/local-groups
We have lots of resources for carers, including a downloadable ‘Carer’s Guide’, which you can find here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
Finally, we’d also recomment you try contacting our Helpline, as they can offer professional, tailored advice on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
Thanks for your reply and for sharing your experience. So tough.
To leap straight in…I think that we carers need to look out for ourselves in a way that most of us are not used to doing and find very difficult because it sounds and feels so selfish. Especially if it involves taking decisions that will impact on our partners/ spouses. But the latter are in no fit state to help / advise, and no one else is going to do it for us, either because they don’t exist, or feel it is not their place ( which it isn’t really). It is taking me a long time to grasp that particular nettle. It is not so much the practicalities, though they are not easy, it is the emotional side of it all which I don’t need to spell out to you.
There are of course various helplines, including the Carers’ Trust and Carers’s UK and whilst I haven’t tried them as yet for various reasons, they are probably very good.
Or do you have a good friend who can act as an objective sounding board to help you explore your options without telling you what to do ( though that might be welcome!) it would no doubt be very hard to act against your husband’s wishes, even though it would be in his interests, ( perhaps impossible legally if house is in both your names) …Having Lasting power of attorney might help …Citizen’s Advice can advise about those kind of things ( we set it up ourselves a few years ago using the forms you download from directgov ( ( I think it was) and it was pretty straightforward and saved a packet on legal fees) .
Ultimately it is better to do things in your own time than when you are forced to by circumstances…but that is so much easier said than done , and just (!) getting through the day can take all the energy you have.
Does your husband have a close friend who he would listen to? You may not feel like sharing your difficulties but if it helps then maybe worth doing.
People have suggested I get a carers’ s assesment from the local authority, which I haven’t done…for various reasons, but I pass on that advice too, in case there is mileage in that for you. Could simply be a case of someone from outside assessing your and your husband’s needs and offering advice about how to meet them…which may (?) affect how your husband views the situation.
This forum has many people who have lots of experience and will help, so keep posting …or start a new thread to find out what you need to know or to explore options, or just for support…it certainly helps me to feel less alone.
Warm regards, Pippa
It’s with great regret that I. have to write this, my Other Half has been given extra meds so say to help with enhancing and correcting Parkinson’s symptoms. He had begun to stumble, freeze and fall, lucky he’s not broken any bones yet.he is getting confused too.
All it has done is exacerbate dyskinesia. Up to now he has been very fortunate to have only had a mild form of Parkinson’s but I have had the usual carers difficulties to manage.
After 10 years of coming to terms with this awful decease, I now have to come to terms with dyskinesia. I am really finding this new habit unbearable.
I know in my heart I shouldn’t say how I feel but all this guilt,in sickness and health till death do we part, is what I “signed”up for,Is not exactly what I’m left with.
When the mind is effected as well as the body. The past 20 odd years is sometimes more than enough. God, please forgive me for feeling this way. But at the moment I hate parkinsons, and all that goes with it. (and I suppose I hate myself too).
All the very best - and to all the carers Jama
Mine is fixated with electrical wires. He has bought several extensions plugs and keeps putting all kinds of plugs into it. Many often not fixed to anything. One day I got up and he had several things all on one extension inc tumble dryer, broadband, a lamp, some phone chargers. I caught him at ot again today when I ask why he gets very agitated, waves his arms and telling me ‘I don’t understand’ - too right I don’t! There are numerous other things inc lamps he keeps setting them all over. I bought some new ones with a view to disposing old ones. But no, he took control of these even put one outside NY bedroom door! I could ho on but you get the picture. Not sure it is even safe anymore.
I share your feelings, but I found a solution for myself and my brother who’s sick.
I’m not young, but I’ve always wanted to travel like him. At some point, I realized that this is the only person close to me and it’s not clear who I’ve worked for all my life? The government? I was not interested in the answer to my question in my head, I started to think only about what to do next.
It was much easier than I thought, sold everything I had and bought a trailer. My brother had cancer, too, and he didn’t have much time left. My goal is to show him how big this world is while he can see and think.