It is good to hear from you all!
Sunray, I feel exactly as you feel: my life long "co-pilot" is relying entirely on me for everything, whereas we did share everything before. My husband has become my baby ; will I keep healthy to perform the task always? Will I cope with all life problems on my own?: those are the niggling questions which surface when I am down and there are no proper answers or at least no happy ones.
This is the hardest job I ever did in my life but a job I want to do through love ; it is the noblest job of all! When my husband kisses and hugs me and say "thank you", "I love you!", this is my reward and it melts my heart!
We have been married for 32 years.
Mariel, my husband is on "Exelon" too (tablets: after min. of it, he falls asleep.
He cannot write any longer: he used to have a very beautiful hand writing.
Tomorrow we will see the psychiatrist (every 6 months)
Thank you all the people posting on this threat, you are a great help to me and I hope I will be to you in some way.
When I started reading all these posts on here, I just wanted to scream and scream - IT'S NOT FAIR, IT CAN'T BE TRUE - but clearly it is true and I shall just have to get to grips with it like all you guys out there. Love and extra hugs all round.
We now seem to be going down the dementia path, it is so awful. The hallucinations became more pronounced a few weeks ago. We had been seen at the memory clinic, then followed up two weeks ago and were given the diagnosis of probable dementia. He has started Exelon two weeks ago, no great change yet. I know this can only go one way and I am so fearful. I daily hate myself for getting cross and frustrated. Reading posts from other is a comfort to know I am not alone. One day at a time I suppose is the best thing.
best wishes to all who care for those with PD.
This must be a really difficult time for you and your family. I know from personal experience how frightening a dementia diagnosis can be.
Have you been put in touch with anyone who can offer support and advice? Dementia UK provide specialist dementia nurses and have a fantastic free helpline you can call them on 0800 888 6678. The Alzheimer's Society will be able to offer support too.
My husband was diagnosed with Parkinsons at the age of 50 and is now 68. I have had a terrible last few years. My husband was referred to our local memory clinic and it was 12 months before he had an appointment. He has now been diagnosed with dementia and is on a medium dose of Rivastigmine. His symptoms were hallucinations, staring into space, looking confused, not responding to me, not talking etc. He also seems to have lost his logic skills - he used be a joiner but now he cannot remember how to do the simplest of things but still thinks he can, sometimes with disastrous results. About 21 months ago he was taken off his strongest Parkinson tablets as it was thought these were contributing to his memory problems. Almost immediately, in my eyes he became worse and also started bed wetting. I was told this was part of his Parkinson symptoms. I was not convinced. I was nearly at the end of my tether. I felt so guilty, angry and frustrated all the time. So much so it was beginning to affect my health. Then about 4 months ago we went for a prescription renewal at our local doctors. I was asked why he was taking Carbamazepine - he had been taking 5 a day for several years for neuralgia. Our doctor told me to take him off them and said he should never been on such a high dose. I did this and could not believe the difference in my husband in only one week of coming off them. He is walking better, he is talking again, he no longer looks confused, his memory has improved and most importantly the bed wetting stopped. He still has the occasional accident but I can cope with that. All our friends and neighbours are commenting on his improvement. I am very angry that no one over all these years had questioned his taking of Carbamazepine. They were literally turning him into a Zombie. I cannot help thinking these tablets have harmed him and contributed to the onset of dementia in some way. Don't misunderstand, he still has some signs of dementia but nothing like when he was taking Carbamazepine which is a drug for treating epilepsy. I feel that at the moment we have been given a reprieve from what is to come so we are going to make the most of it while we can.
I can really empathise with you and know what you are going through.
Make sure you try and get some me time - I go to a local beauty clinic for a back massage once a month which helps me to relax for a while at least. Take Care.
Hello Dear Friends
This is a subject I FEAR as I have many of the symptoms seeing cats and squirrels, my Mother and Father (both deceased) plus a almost impossible to control mischief making ability which gets me into muchotrubbble (spanish for trouble),, if I lose it how will I know plus I have donated my brain to science but at the rate my brain cells are dissapearing there wont be owt left by the time I shove off.
Hi Natasha. I'm glad you started this thread. Like other posters on here, I've found a lot of information regarding Parkinson's Dementia on the Alzheimer's forums. My 82 year old mother was diagnosed with PDD only a week ago. We had to attend a memory clinic for the results of her CT scan and memory tests, which was terrible. Although the consultant was a lovely chap, he asked mum about her memory, whether she had hallucinations, how she found daily tasks etc. Mum, of course, denied everything and said she was perfectly fine, so the consultant then turned to me and asked if I disagreed with her. I thought this was a terrible way to conduct the appointment. It basically meant that I had to state in front of my mother that everything she said was wrong. I've since complained and told that next time, I should ask for 'time alone' with the consultant. Anyway, mum's memory test (can't remember what it is called)... went from a 72 score last June (apparently 'normal would have been around 83). Her last test a few weeks ago, she scored only 58, so to me this looks like a fairly fast progression over a period of only 4 months. We are expecting a visit from someone recommending different medication next week. The consultant also said she had frontal brain shrinkage, so I've also looked up frontotemporal dementia, as a lot of the symptoms link to that as well. Mum lives in a sheltered housing 2 bed bungalow, (we live a 5 minute walk away). My husband and I want to move in with her and sell our own house when she gets worse, but I'm told that although we can do this, it might be seen as deprivation of assets as my husband is 65 and would then class her home as ours as well. It's so frustrating! Anyway, nice to have a forum thread linked to PDD - stay in touch and remember - you're not alone!
you have such wonderful sense of humor.Im getting into a few hallucinations myself,strange but harmless. They usually come while in bed and if I add a pill c/l the day before.So there a med problem not usually PD.Mine are people usually faces on the ceiling.I cant wait till I get whole people sitting around me like a few of my PD buddies sort of would enjoy the company,better than watching TV here now,LOL.Theres to are med caused but hard to get people to challenge their doctors meds orders.Im glad i do my own as Im much better off for doing it.Ive read with horror what some have written in,When you go into a home most never get approiate care especially with PD.They just wont spend the extra time.I advocate for several patients now and while I haven't raised much cane yet the time is coming.Ive told faculties PD is a long term illness and if managed correctly most can put off a home right up to the end.But today there are the charlatan homes who prey on people and get them in far to early.
Fed and all of you take care of yourself and read up on PD and listen to others here and save yourself allot of future pain
It seems to be fourteen months since I was last here and we had had a diagnosis of lewy body dementia. Quite a change since then. No longer driving, can't believe my husband was driving this time last year. Sleeping throughout the day even more. Concentration so limited, he really does nothing and does not have much interest in anything. What I find hard is his total lack of effort, he just can't be bothered. He has an indwelling catheter. It is important that he drinks a lot to help prevent urinary infection. To this end I am constantly giving him glasses of water etc. he keeps complaining there are "bits" in the water! There is nothing there. Then of course I need to constantly remind him to empty the leg bag of collected urine, it is a constant round of nagging. I hate what I am turning into. My days get chopped up as I have to drive him to classes, lunches etc. he is SO reluctant to take a taxi, it is ridiculous. Short pieces of time are not much use when you want to do things. This is only going to get worse.
Yes LBD is much worse than PD.I knew another who had it He lived about six years after DX.At the end he liked to watch TV some,He lived in a good facility who took good care of him.He had troublekeeping focsed but loved when his wife came to visitIf.He also had a good sense of humor,Take care of yourself,patience works wonders when faced with ordeals such as this
Hi I’m very new to this site. My husband was diagnosed with PD 3 years ago and within a year had also been given diagnosis of dementia possible Alzheimers! A few months ago at a PD consultant appointment we pointed out that the medication had no impact of Ian’s PD symptoms and he had in fact developed a kyphosis which is when the muscles in the back stiffen and cause the person to lean to one side. Ian leans to R side. The consultant then said this doesn’t look like true PD but rather Parkinsonism with Lewy bodies dementia! To say I was shocked is a understatement. Ian had been given a definitive diagnosis of PD following tests including SPECT scan!
We have an appointment for another memory test and to see Psychiatrist for elderly straight after. He is already on rivastigmine 4.5 twice daily and the maximum dose is 6mg twice a day. I’m hoping to get a proper diagnosis of LBD which,although it will break my heart, would allow us as a family to plan ahead.
Will update when I have more information
Take care everyone
A warm welcome to the forum.
It sounds like your husband has had a choppy and quite confusing diagnosis which I’m sure hasn’t been the best experience for either of you. I’m really sorry to hear this.
We have a very supportive and engaging community so I’m sure you’ll receive some great advice from some of our members soon. I thought you’d be interested to know that the Dementia with Lewy Bodies Consortium has recently updated its recommendations on the clinical diagnosis. There’s more info on this here, https://www.parkinsons.org.uk/professionals/news/updated-consensus-guidelines-dementia-lewy-bodies.
We also have a lot of info on Lewy bodies on our blog which you can find here, https://medium.com/parkinsons-uk/lewy-body-timeline-374e8110903b.
I hope you find the information above helpful, however, if you have any questions you can always call our helpline on Monday to talk to one of ours. You can call our free and confidential helpline on 0808 800 0303 Monday-Friday: 9am-7pm and Saturday: 10am-2pm, but please note that it’s closed on Sundays and bank holidays.
Reah - Forum Community Manager
Hi Hettiedoll, I do hope you get your diagnosis sorted out.
My husband is 80, was diagnosed PD about 10 years ago. His medication has gradually increased but he is having more down time. A year ago he started having the occasional hallucination of people sitting on our settee. He knows they are hallucinations. We immediately made an appt. with our neurologist and he straightway said he had Parkinson’s dementia with Lewy bodies.
Since then he has had a few hallucinations. He is sometimes confused but his general memory is not a lot worse than mine (now that is scary). He is having real problems with his mobility. He uses a rollator and a zimmer indoors but his left leg, his Parkinson’s leg we always call it, just stops working. He also has problems with his balance. All symptoms of Lewy bodies and general Parkinson’s! 55
A good result is that we were visited 6 months ago by a dementia nurse and she seemed to concentrate on me, the sol e carer. Emergency care was set up in case anything happened to me. John has telecare in case he falls. I suspect everything will suddenly get worse but meanwhile this time has given us a breather to plan even more for the future when we hope to nurse him at home.
The periods of confusion are getting longer and more frequent. I have to work hard to keep my patience. I am not a good nurse. We have been married 56 years but the hardest part is that he is not the same person.
My thoughts are with all carers
Hello, I posted a question about the progress of Parkinson’s dementia in the Symptoms section, hadn’t found this thread at the time. Husband has been PD diagnosed for 11 years and mild cognitive impairment diagnosed a year ago, but that’s got considerably worse and I’ve found it very hard to deal with. We have a nurse from the memory clinic coming out next week to discuss medication - and I’m so hoping there might be some kind of support forthcoming as we don’t have family nearby. Feeling very despondent about all this and worrying about keeping myself in good order so I can look after him. I have felt a bit better having read some of the comments on here - less alone with it.
I’m pleased to see that you have found comfort in this thread and have been reassured that you are not alone with what you’ve been feeling. I hope the visit from the nurse next week gives you and your husband the support you both need. We know that being a carer can be really challenging and as well as the forum, there is other forms of support available to you including local groups and our helpline. We have an entire section on our website with this information which you can find here - https://www.parkinsons.org.uk/information-and-support/support-you.
Please feel free to continue using the forum as frequently as you wish.
hi i am or we are in the same boat HWPD diagnosed last yr following a delerium but would think he has had PD about 8 to 10 yrs had dementia or memory problems 3 maybe 4yrs only dx 1 yr ago ,intially seemed better on sinemet ,but its so hard looking after him ,for me its about time lime progression and the fact that no one can tell you how long it will be like this ,very little info about Parkison s with dementia
Hello I am new to this forum. My husband - 10 years my senior was diagnosed 10 years ago with PD. Did very well until 2018 when he started falling - extremely low blood pressure - 2 hospital admissions because of falls. Also has PD Dementia.
Came home from hospital twice both times he was back again within a week of coming home - falls again. I had to sit and watch him all day - scared to leave him for a second. He had terrible night terrors -we could be up at 3 am cos he was convinced there were people in the house. Hallucinations - would speak to people that weren’t there. These people were never good people - wanted to harm him. Bouts of extreme paranoia.
Developed Nocturia . I could not leave the bedroom at night - hence very little sleep. Came to crisis point 1 day April 2019 when he went into a care home for respite. It quickly became apparent that he would have to be there permanently. To say this has broken me is a total understatement - I cried every night for 3 months after visiting him. (I visit him every day for most of the afternoon) Wish I could say I feel better now - yes I can get a shower or walk our dog or pop to the shops but it’s been a high price to pay. He knows who i am but he can be very agitated with the carers at the home, sometimes verbal abuse, physical abuse - never with me. He talks rubbish a lot of the time - so upsetting. He is so complex that he has a 1 to 1 carer with him 24/7.
His Consultant has told me he thinks he has Parkinson’s plus because of how things have developed quickly. I feel so sad for everyone on this Forum going through terrible things because of this devastating disease.
Hi Maureen. Welcome to the forum.
I’m so very sorry to hear about your husband, and the toll his illness has taken on the both of you. We have lots of information and advice for carers and family members on our website, including a search tool where you can find local services, activities and support: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons. We hope you might find this useful.
We’d also advise contacting our Helpline with any queries or issues you may have, as they’re able to offer professional advice, information and support 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.
Hello Maureen, so sorry. Love & hugs. Look after yourself, you are important too.