My husband has Parkinson’s and dementia and we recently went on holiday to Portugal. We got cover with Free Spirit. Might be worth a try.
Susan
My hubby now 64 was diagnosed 12 years ago… he worked on for almost 8 years & retired from offshore just before covid… he had the DBS op feb 21 & physically he is great, hardly any tremors, plays walking football ( as we wouldnt let him continue with normal football after op) due to him always heading the ball & didnt want his probes broken… what i struggle with his the mental aspect, he is paranoid about everything, he overthinks everything, & is like a dog with a bone on certain subjects, his opinion is the only opinion, which he was never like this before…he thinks he can let the grandkids watch anything he says, when you try to tell him him its not suitable, he disagrees & doesn’t seem to have any filters & forgets they are 8, 4 & 2… i have lost my hair, eyelashes, eyebrows with the constant stress, i feel as if i am walking on eggshells everyday…i work from home 2 days a week & he will interupt constantly with something he has just read & will not listen when say i am extremely busy, it is so frustrating, thank goodness for mondays as i am in the office… we still go on holidays, but its difficult at times as he struggles in the heat or feels tired walking in it… he also loves people telling him he is doing great which is great but there are lots of times i won’t go to the pub as every conversation comes around him & parkinsons & i’d rather be home on my own as its a 24/7 reminder as it is… others think its all about tremours & don’t realise its neurological so there are other things going on in his head as well as being a man lol. Its not easy for partners regardless as they have full responsibility & care… hats off to all of you as you are all doing a wonderful job xx
Hello, My husband was diagnosed in 2016 when he was 65. The ‘honeymoon’ period of practically normal life lasted until about 18months ago. He’s now been diagnosed with a form of Parkinson’s dementia and we’re awaiting the memory clinic nurse to call back and see him when she’ll probably introduce Rivastigmine. This has totally floored me, although I’ve suspected for some time something wasn’t quite right. He scored badly in the tests she gave him when visiting our home earlier this year. Because he’d not long had a change of one and cessation of another of his PD meds, she held back prescribing the dementia medication until he was back on track with PDnew meds regime. I’ve tried to get him to use his brain more by encouraging him to read or do puzzles, play cards etc, but as he never went in for any of that pre Parkinsons, I know it’s unlikely he’ll start now. I feel my world is shrinking and more so lately. So sad. As well as this new addition to his symptoms, he also struggles with bladder and bowel problems (i.e. constipation and urinary urgency) this greatly impacts on our social life as I’m constantly stressed when we’re out and he has a 'toilet 'problem. He’s recently had a bladder scan and the urologist now wants him to undergo a cystoscopy (has anyone had experience of this?) DBS was never offered as we were told by the consultant if there was any impairment of cognivity the procedure could exacerbate it. Sadly, it seems DBS is the only way Parkinson’s can be put on hold for a number of years. But for those not offered it or unable to undergo it, it’s just keep on taking (and increasing) the meds… Such a cruel and destructive disease for both the sufferer and carer. Jean
@My_Life this all seems so familiar, and I feel so so guilty at times but I could scream (I can hear myself, that sounds so harsh), he was the most selfless person ever but I just don’t know at times where we/I am. My husband was diagnosed in 2015 and retired at the age of 60 last year. Most of his working life has taken him away or travelling so home 24/7 is not easy for us both. At times he is fixated about things, over thinks everything, seizes of the smallest of things, nothing gets done and I also feel that I’m walking on egg shells or/& having to think twice how I say something. I just wish he would open up but appreciate sadly that’s his way of self protection. We have two uni daughters still at home, my elderly mother and I work, I just wish at times I could off load some of the tasks. Unfortunately he seems to have lost sight of work. I am busy and involved at work, at times escape to the office to give us both space but I don’t need the added travel/extended day. Sadly he waits for me to ‘direct’, doesn’t actually get on with anything on his own. I’ve been working all my life (sorry sounds very ‘I’), and yes, those (in any circumstances) who think this ideal life awaits are much mistaken 
but at the age we are we should be expanding our circle/experiences and I feel as if my is shrinking - I feel guilty if I leave him, go out too often as sadly he does not have much of a social network aside of our friends. It’s definitely not all about tremours, it’s the thought process and filters, he just thinks so different at times. I know I’ve got to change the way I think and perhaps be a bit more accepting and just roll with things, perhaps I try to reason or attach too much logic but it is hard at times. Thanks for listening XX
Hello, I’m new to this but would love some advice on how to cope. My husband was diagnosed a couple of years ago at the age of 73. His tremor, etc, seem to be responding well to medication but the cognitive problems are increasing rapidly, also the bladder ones. We have a good neurologist, also a Parkinson’s nurse. The neurologist has told me not to catastrophise nor to look up Parkinson’s dementia yet but the nurse has given the opposite advice. As yet I haven’t, my own health is currently very poor and I live with chronic pain so am finding it very difficult to cope. It’s mostly short term memory problems but they are increasingly frequent and more serious, he’s also constantly tired and sleepy. I feel that life is closing in on us and that we are very much alone as nobody seems to understand the problems or know how to help. I no longer drive so am trapped with him. I really want to help him…any tips please ?
Hi Robin2,
Hello and welcome to our community forum. While you’re sure to hear from members soon, we would like to make sure you’re aware of the resources available to you through our website at Parkinsons.org.uk (like this section about carers: Carers' support | Parkinson's UK) as well as our free and confidential helpline on 0808 800 0303. The helpline is staffed with friendly and smart advisors who can offer a range of services, including just lending an ear. Please do reach out to them when you can.
With our warmest welcome,
Jason
Forum Moderator
Hello Robin, I’m sorry to read you are finding things so difficult just now. It can’t be easy when you have your own health problems as well. My husband is a bit younger(66) and has been on his parkinsons medication for 7 years. The medication itself can cause sleepyness and tiredness, if you can easily contact your parkinsons Nurse they may be able to look at your husband’s current medication and assess if it is still the best treatment/doses etc. At one point my husband also had some memory decline, his was, at that time, very much related to a medication change. Now he is pretty much stable, a bit slow in his thought processes and prone to falling asleep a lot if he sits down! we try to keep active as much as possible, even just a short walk for 10 minutes helps with aches and pains, and most importantly with mood. There are lots of good leaflets from parkinsons UK that give advice on just about every aspect of parkinsons symptoms, including bladder issues and memory and cognitive decline. I find them very helpful. I also read stories on this forum which help me a lot. There are people on here who post a lot about their experiences who I’m sure will respond to you with great tips and advice. You are right when you say not many people understand just how this condition affects people who have it, and their loved ones. If you have family, perhaps you can have a chat with them to let them understand more and perhaps offer some support to you. There are also many carers groups out there in many forms, and often local authorities can point you in the direction of support groups in your area. Don’t be afraid to ask for help. I seek out information all the time, it helps me cope. There will be good days and bad days, you must look after yourself as well as supporting your husband. There is always someone here on the forum to chat to as well.
Hi ladies, hope that we are all ok. We are on holiday in Florida at the moment with the kids who are 16 & 14. We have been before (7 years ago) but we are all aware that this will be our last time of doing this holiday. As you can imagine, it is a very busy holiday and very hot which I don’t think is helping R. His processing has really slowed down and he is physically slowing down which I am putting down to the heat. We are all having to walk on eggshells around him because anything that he perceives as a criticism or a comment he is imploding on. We have never had so many arguments. If he doesn’t get his own way he says that we never do anything he wants. He is also been unnecessarily really hard on my son. He also thinks that the Disney corporation is the root of all evil and has been explaining relentlessly why he thinks this. It is really a once a life time holiday and we are all trying to enjoy it and make happy memories but it is so hard. Personally I have been on the verge of tears nearly everyday. Sorry for the long message
Hi RachRob,
We’re very sorry to hear about these challenges. Please do take advantage of our helpline, as they have resources they can provide to carers as well as people with Parkinson’s. We are aware of how difficult the role of carer can be, and you must protect your mental health as well. These truly helpful advisors can be reached on 0808 800 0303, and are happy just to listen when you need an ear.
With our warmest wishes,
Jason
Forum Moderator
Hi - I can totally support you in what you are going through - I have been going through the same for the past 6-7 years and no - it doesn’t get any easier I am afraid to say. You find you have to keep ‘biting your lip’ for the sake of others which is not good for your own self worth. You have to decide to either keep going and putting up with it for however many years or try and make a life for yourself - we only get one life…
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Hello, my husband was diagnosed in March. He is 52, I am 46.
He isn’t coping well at the moment. He is very emotional about Sunday as we are having a fundraising day. Don’t know whether he should go or not.
Is anyone else always in the wrong? It genuinely doesn’t matter what I say or do, I am wrong. It is just draining
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What about husbands looking after wifes?
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Excellent idea, maybe you can get the ball rolling.
Ive latched on to your last few words RachRob, its draining…im awake at 5am posting because hwp is up 3 times a night, my lack of sleep is bringing me very down, my irritability is very high, ive always been very supportive and keen to help, but right now, as my own health declined, im struggling to cope. Biggest issue is night time dreams, confusion on wakening, worsening short term memory. This has lead to accusations, eg, ‘where have you put this and that’, have you touched my tablets, etc etc. Its all ok during day time, sense and rationality seem still to prevail. Last PD nurse visit didnt want to introduce more night time meds incase of side effects causing issues. I totally understand that. But im not coping well. This my problem though, of course its not great for hwp either. Im really just on here to release the frustration. My daughter was here for 3 nights, she could see the difficulties and witnessed my distress, but there is no easy answer to this. I know wives and partners will understand. My brothers wife has had PD since age 39, he spent yesterday in A and E after she had another fall. Do you ever feel you are just left to get on with it?
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100% we are left to get on with it. Rob had his last consultant appointment in August and had a phone appointment in January with a nurse which he obviously underplayed everything apart from a stiff neck. We were then sent to an NHS physio who gave him some exercises for his neck and signed him off. He has not done any of the exercises. He has lost muscle on his legs, arms and hands and is getting increasingly frustrated that he can’t do anything will small movements including typing which he needs to do for work. He is using one hand to move the other on the keyboard. He won’t reach out to a Parkinson’s nurse and still won’t consider taking Levadopa. He hit me in his sleep a few weeks ago which is impressive because we have a super king bed but I know that was just an accident. I am trying to let him be in charge of his illness, he knows how he feels and he knows what can be done about it. I am really focussing on myself and the kids (we are heading into a-level and gcse zone). That is the best that I can do at the minute.
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Looking at the posts above it could be me writing them! My husband was diagnosed in August 2018 and was managing well on madapor and Entocapone with Ropinerol at night for his restless and painful legs. However he had a nasty bout of pnemonia at the end of 2023 which kept him in hospital for 5 weeks - 4 of which he was on IV antibiotics and he his PD has gradually been getting worse. He has just got over his 4th UTI in 18 months. He is also getting increasingly confused which the GP is finally looking into. It is heartbreaking to see him struggle when just 8 years ago he was an active 60 year old self employed working all hours on farms and doing gardening. I took early retirement in January 2022 to coincide with him getting his state pension but all the plans re holidays we made then are now distant dreams - we’ve cancelled 2 cruises so far and another booked for September but it is doubtful we will make it. We used to regularly go out, sometimes all day, when we could at weekends or on days off but now most of our trips are to hospital appointments, the GP, Supermarket or Local Garden Centre. We do manage to g out to lunch but he is self conscious so we don’t do that as often as we did. I used to go out to lunch with friends and former work colleagues regularly but now I have to ensure that there is somebody who can with sit with him whilst I’m gone so I don’t do it as often ie once every 3 months rather than twice a month even though I probably need it more than ever. Even if I leave him for an hour on his own I worry constantly about what he is up to and whether he has fallen over. We have been married 45 years but I have now become his carer rather than his wife. Having worked all our lives, paying off the mortgage and getting decent pensions we are now in the enviable position of having more disposable income than ever but the unenviable position of not being able to spend it to enjoy ourselves.
Apologies if this sounds like a giant winge but when I think of what we used to, and had planned to, do I hate the new normal that our lives have become particularly for him.
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You have my every sympathy. We share many frustrations and the guilt, at even saying them out loud on this thread is awful, but we do need somewhere to express our own feelings and i hope those who have parkinsons are not upset or annoyed reading our moans, as we totally understand its not easy for them. Im awake since 3am, my new normal as hwp paces up and down, making coffee, going in an out of cupboards, eating snacks, messing about with his phone, his second new phone in last month. I think his medication is over stimulating him at night. What will nurse/ gp say, disease progression or medication alteration, neither will be an easy fix. Saw my own practice nurse on thursday for my health issues, she came over and gave me a hug, and said i can see your struggling, all that did was make me tearful! What can you do, snatch a few hours sleep when u can, get up, and do it again… ive already accepted retirement ‘plans’ are a distant memory…i just wish i could sleep …
Well things went from bad to worse here, 1am wednsday hwp got up, confused hallucinating, set fire to kitchen. 999 calls made, Fire service contained fire to one room and we were allowed back in. Long story short, multiple agencies now involved. His dopamine agonist stopped, new night time drug added, quetipine, ,more changes maybe required. Both of us getting assessed for care needs today. We are only 68. Retired at 60, had a just a couple of years before PD reared its ugly head. We have coped ok till now. I was always totally independant and supported him, last year i had muliple spinal compression fractures, so now im living with osteoporosis, my own mobility is limited, but we coped…you do…you get on with it…find ways to adapt, but its taken such a downturn