Getting slightly desperate

Thank you for the kind thoughts - much appreciated.

The really difficult thing for me is that he is deteriorating physically and I am having to do more for him which is fine by me, but he does not like it - and the physical deterioration is made worse by decreasing the paranoia-inducing drugs.

It is a bit of a Catch 22 and makes me feel uncomfortable, as the paranoia is targeted directly at me and the attempt to reduce this is partly for my benefit, which makes me feel bad. No easy way out.

We just seem to have entered a new phase. Not welcome.

Hi Luckygirl and Annesixty !

Interesting to read your posts ...and helpful as well, to know that I am not the only one .....OH has PD and vascular dementia with lewy bodies ....at the moment the diagnosis is fairly recent, but already I have notice deteriorations ...like your OH's he was in a business for which he travelled the world and his world is now just virtually the conservatory or the small bar in the nearest town and the DIY shop. He was also a total diy enthusiast, renovating a large house almost on his own, after the age of 72 ......now he took the toilet seat off this week to replace it ...but, bless him, he was unable to remove the nut and bolt ....which involved buying a lot of new tools for the job .....which didn't work ! last night late I replaced the washers put back the old seat (nothing wrong with it ) and tightened the bolt underneath ...I felt so sorry for him, as he had been at it for four days ...i said nothing and so far he doesn't seem to have noticed ! As you say, life is not all bad and there are brief spells of humour ....he is still able to make himself a coffee and in fact just came in and asked if I would like tea .....that was an hour ago and he is now watching Police Interceptors and has totally forgotten ! I don't mind I didn't really want tea anyway, just said yes as he wanted to do it ! The worst part to cope with is the aggression ...I hate being shouted and sworn at and usually I just walk away ......we have only been married for 16 years, I met him around three years after his late wife died ...they had been married for 42 years (he is 84 and I shall be 70 in a few weeks). His daughter lives in the UK but hardly ever calls him and when she does, she complains he has not called her (we do, and e mail, and text but she never answers ! she is 54 but has always been single and enjoys her life !)

Like you, I tried to join \PD UK (as it is better for me to communicate in English) but, could not get past the registration ...password kept being rejected ....I also joined PD France, but sadly missed a meeting, the first one I was going to, as I was ill. I find if I am ill (not very often) things are more difficult as I still have to drive him if he wants to go out.

I wish we had PD nurses here ...there is very little support here mind you. if they were as uncaring as yours sounds, maybe not !

It is great to be able to #talk# to people in the same position who understand ...I have been accused of being selfish or mean when I say the situation is very difficult .....onward and upward ! Lovely to read all the supportive notes !

I too have a husband with PD, and he also sees a specialist in geriatrics because we have only a visiting neurologist at our hospital. I look at a number of Parkinson's websites, and the general consensus seems to be that a neurologist or preferably a movement specialist would be much more knowledgeable about the condition and its treatment. It truly is a very cruel illness that comes in so many forms, but there seems to be a lot of research going on at present, and hopefully a cure is not such a remote possibility. Do you belong to your local Parkinson's support network, Lucky Girl? I'm sure they would be much more helpful than your Parkinson's nurse.

To all you very strong ladies caring for loved ones ???

Also glad to hear that I'm not the only one. DH was diagnosed with PD nine years ago, and it could be, according to classification that I saw online, that it is perhaps in the advanced stages. Neither the neurologist or psychiatrist have mentioned this. Recently he has needed a great deal of care, some days showing little independence. His paranoia/delusion has escalated in recent weeks. No verdict as to whether this is med induced, dementia or both. Our lives are greatly affected, with outings difficult and holidays out of the question. He is very paranoid at times, and his aggression is usually directed at me. Right this minute, though he is convinced that the two Polish workmen, who ere putting up shelves in a cupboard, will be stealing things. I'm keeping my fingers crossed that he doesn't speak to them! As other posters have said, there are lighter moments. I do find myself smiling at the more bizarre moments. I recently had to cut the toe off of a sock to please him. He suffers a great deal of pain in his feet and
legs, which makes him very grumpy, understandably. We have support at the moment from a physiotherapist and an occupational therapist, and also a community mental health nurse. It hasn't changed much, but I can talk to them. I called the Parkinson's nurse. We had a chat, but she said she only visited if someone was housebound. Like others have said, the person we knew has gone. We have happy memories, but they also bring sadness. We never know what life will bring. We have to put it in perspective - I have lost dear friends and relatives in their forties and fifties who would have been willing to care for a sick husband if it had enabled them to reach seventy like myself, and seen their DC marry and their DGC arriving. It's the only way to look at it sometimes!

Luckygirl It must be really terrible for you and I admire your stoicism in the face of such difficulties - I'm fairly sure I wouldn't be able to cope so well.

I think the PD nurse's response to your quite natural feelings was completely lacking in the sort of empathy one would expect from someone in a caring profession. I can only assume that she had had a particularly horrible day, but really that is no excuse.

I'm sorry it's no practical use but I send you my admiration and best wishes.

It is good to talk with others in the same boat - and on a website forum, which is more anonymous and makes it possible to be more honest than in RL.

I was interested that I am not the only one who has not been able to get onto the P UK website forum. It is very frustrating.

Keep on keeping on folks - it is the only way. And Gransnet is here for so much support.

The PD Nurse stopped helping us when OH became unable to drive to see us , she then rang to say he is off her books .OT started to get him a wheelchair 18 months ago when the one we had bought was not suitable , It has yet to be used as she keeps adjusting bits and now we have to hoist him ,which isn't possible for me to do . He spends his day in at kirtain ( spelling?) chair with wheels so it can move him from the bedroom to the living room. , but it won't go outside . The Physio and Memory nurse have not been seen for ages . The District Nurse is a saint , and is there as soon as we need her . The carers are our lifeline , so cheerful and helpful

To all of you who are suffering under this sort of relentless strain - I wish I could send something more helpful than . I can only offer my prayers and thoughts.

To all you strong women and my beloved sister, I wish all of you some peace and respite in your long days ,and sometimes long nights. This isn't what any of you thought retirement would be like and I feel for you. Those of us who aren't affected personally by these diseases can only listen and 'be there' for you,always.

Luckygirl, I would agree that it might be helpful to talk with the pharmacist - I have often found them more knowledgeable than the doctor when it comes to medications (especially lots of meds). I can't really add much that other posters haven''t already voiced, only to say I feel for you and admire the strength you show when it can't be easy for you coping with all this. It is important that you keep interests like your music group - you could probably do with a little more 'me time' or 'time out'. Thinking of you and hoping you get the help and support

I am very lucky that two of my DDs live within 10 minutes drive so I see a lot of them and the DGC. They are very supportive in a non-intrusive way and that is much appreciated. I am also lucky I that I am able to go out and leave OH for short periods - I ring in and check he is OK. He is also able to potter about the house and do stuff - wash up etc. - when he is physically OK, which comes and goes, depending on the time of day and the drugs regime.

I realise that others with a similar challenge do not have these blessings.

It is the paranoia that just gets to me. I cannot bear him thinking these dreadful things about me. I also find it hard in that it is like living with 2 people: sometimes he is my OH and others he is some strange suspicious bloke staring at me and making accusations. Bit of a roller-coaster!

luckygirl when my husband was in hospital recently he was acting strange too due to meds I know how you feel

You need a second opinion I would say A FRESH look at things

I do not know what your husbands illness is but it can get so muddled

Take a breath and a clean look at things.

Do not expect any kind of sympathy from the PD Nurse just because to her all this is mundane and she sees it every day and has obviously lost the impact effect that it has on family members but you do not need her you just need a new start with everything put pen to paper and write a list of the things that you fell need sorting and get through them one by one.

You can do it, life will not always be this way it will get better

Hello Lucky, I'm just catching up with your thread and want to add positive thoughts and admiration for you and others who have become carers to their life partners. The PD nurse is out of order, acted unprofessionally and to suggest that because 'she sees it every day' so has somehow forgotten about the impact on carers is excusing the inexcusable.
Look after yourself as well as you can x

Yes Iam64 I agree it is inexcusable but reality that PD can be horrid have experience myself recently with my own husband.

I was just trying to make her strong and not have to rely on the kindness of PD as it is not always forthcoming.

It does not help and is not at all productive to post a criticism of a previous post,, rather just give your own opinion on the matter and try and help.

Sadly living with PD does not "get better" Serkeen, any more than it does with Dementia.
I am glad your husband is so much better now, was it a heart problem? I seem to remember reference to peritoneal dialysis too is that behind him now?

I've got patchy internet on holiday so haven't been on here for a few days. I've no personal experience just huge admiration for all coping with the deterioration of a long standing and much loved person. Rant as much as you feel you need to, I'm sure I would, it must be a lonely place to be at times.

Serkeen how can you say
I do not know what your husbands illness is but it can get so muddled

And then say in the same post that you have had experience with PD with your OH?

Is the the same OH who has been given his "marching orders" too?
Poor man

I am have total admiration for all you lovely ladies who are caring for your DHs with PD. I havent first hand experience of PD but have had in the family and never knew how my grandmother
in law coped all the time with never a break.

Lucky, it must seem so unfair that your husband harbours all the awful thoughts about you when we know that you g Ave always been a huge support to him.

Like others, I admire your stoicism, Luckygirl.
Living in that kind of situation, couldn't you set a few hours aside every day just to think of yourself?
For your own sanity.
Same to others who are living with similar trials.

Sorry no help but thinking of you x

I feel for all of you whose husbands are suffering from these terrible diseases of a degenerative nature. You put up with so much, my grandmother had PD, and my mother, poor dear, cared for her until the end of her life. This was her MIL who had shown her no affection in all her life, how she cared for her is beyond me.
I suppose you take it one day at a time. I just hope tomorrow is a good day.

A previous poster said You may also want to consider requesting that your other half is taken in to hospital for a complete and thorough medication review.

This could be a good idea.
It is easier for hospital staff to deal with any behavioural problems caused by adjusting medication, than it is for you. That is why only 'tinkering' can be done for someone while they are at home, but a much better assessment of the situation can be done in hospital.