Getting slightly desperate

I have read through all of this thread - I have no experience of these conditions some of you need to contend with on a daily basis. I am so full of admiration for you - it makes me wish I could help in some way - this sort of thing is something I worry about should it happen to one of us.
For some conditions there are local self help/support groups - does this not happen for these illnesses? I can see that to let off steam or chat to someone in a similar situation or a person willing to listen and make a cup of tea might be a great help.
Just remember ladies there are people here who do care and think about you even if we cannot give any really practical help. X X

Every GP surgery has a highly qualified pharmacist visit and check through prescribed drugs ensuring compatibility etc. , they know much more than the GPs it seems and ours is the most helpful lady when we have problems with my DH's meds. Could you perhaps call your surgery and ask to speak to your pharmacist? Ours only works at our surgery 2 days a week as she works in the hospital/other surgeries on other days so you might find you can't speak to yours straight away but so give it a try. Good luck

We are in that weird transition period from partner to carer - it is difficult territory to negotiate. Maintaining his self-respect is the main aim at the moment.

Mind you, there is humour to be found in just about anything - if you had seen me trying to dress him this morning and get his truss on you would have laughed - I know I did - couldn't help it.

Luckygirl, not a lot to add but sympathy and support. I cannot imagine how heartbreaking it must be to witness the decline of a once intelligent and articulate partner.

It reminded me that my neighbour, in her 70s (we haven't lived next door to her for long) came and knocked on the door a few weeks ago. The poor lady apologised and asked us if we could hear her husband shouting. He has a form of dementia and I know the word 'paranoid' was used.

She is his carer. It did make me wonder how she copes behind closed doors. She was very upset. We haven't met her husband but she says he is deteriorating and swears at her a lot, so she came and apologised, in case we heard his 'bad language'. He worked in a specialist scientific field and she too mentioned that she couldn't believe how this highly intelligent and respected man had changed because of his illness.

How sad. We assured her she had our sympathy and we offered our support and told her she didn't need to apolofgise to us. (She has enough on her plate!) I know, realistically, there is little we as newish neighbours can do. Poor lady.

It made me wonder about the difficulties and sadness involved when a partner changes so drastically and the relationship becomes one of patient and carer. It must be heartbreaking. I haven't experienced it, but luckygirl I offer you and any others in that position my very best wishes, sympathy and admiration.

ann - I have it easy compared to you and send love and support.

I have joined Parkinsons UK but their website has caused endless technical glitches and I have given up on their forum - it refuses my password and is generally a pain! I did however ring their helpline earlier in the week when I was feeling a bit desperate and cannot fault that - they were most helpful. I would recommend to anyone in a similar situation.

Luckygirl - you are serving a tough shift and your PD nurse has not helped. She needs some career guidance! My husband had a rare form of early-onset dementia and paranoia came into it at times. You are right - it is the hardest thing to deal with - so hurtful! Please start thinking now about respite care, and ultimately, professional full-time care in case you need it. Believe me, I've got the t-shirt! All the very best to you.

Have you tried support groups like Parkinsons UK? They should be able to tell you what is available and at the least you can speak to people who are going or have gone through the same thing.

Actually, holidays have gone, full stop.
He doesn't know where he is and that frightens him so we have to stay at home, 7 years now, but that does apply to many , so I must leave my own "pity party", and get over it.

silverlining has put it so aptly, I find it very difficult to remember my H as the happy, funny, intelligent man he used to be.
All I see now is the present, he is such a different man in every way and we have no past to share. That can be so lonely.
We were so very happy for many years and that seems to make it worse.
We have friends who, after the children grew up , didn't ever want to holiday on their own, they always needed other couples, we were always happy just with each other and now that has gone.

Luckygirl you have my greatest sympathy. I do not have experience with PD but my mother suffered from paranoia most of her life and got worse as she aged. She would visit one doctor or one dentist and then decide they "were in on the plot against her" and would not return. As we did not live together, I was usually safe from being suspect, however every single email started with "I know you think I'm crazy but..." I could not find anyway to help with this, eventually she had a stroke and all the suspicions went away. I enjoyed about 2 lovely, peaceful months with her before she died.
As to the woman in the music group, you have done the right thing! I am surprised that she has the nerve to try and re-join a group which has so much unpleasant history for her - or at least for the others in the group. You have more than enough on your plate and should be allowed to peacefully enjoy the time you spend with the group.

You all sound amazing women on this post. Hoping you all have a good enough day. ?????????

Caring is a long and sometimes lonely road fraught with the difficulties of treatments, medication which may need changes to. Its hard to remember how things used to be but sometimes it helps to think back to the early happy years when these sorrows were nowhere on the horizon.
Take support from where its offered and i hope that if meds are changed things will improve a little.
All good wishes to you.

Karma is in action if the music groups have rejected the person who caused upsets previously, she will just have to get on with that.

You sound so full of love, I hope that karma is there for you too.

Sending love and respect.

How hard all this must be. Our next door neighbour had PD and I saw how it affected his wife. She did get support from her local PD group which helped a bit.

Keep on posting (((hugs)))

Everything that grannyactivist said [hugs] and sunshine always helps a little bit.

Thanks everyone - your kind wishes are useful, so do not think you have "nothing useful to add."

I have to hang onto the hope that the problem lies with the meds, as my Mum had Lewy Body Disease (a PD related dementia) that made her very paranoid and hallucinate. I feel I cannot do that all over again, but will of course if the need arises.

Luckygirl I have nothing useful to offer but thinking of you.

Nothing to add to the good advice already given, but to all you lovely people whose patience and kindliness are being stretched every day by such difficult situations - and yet you keep on keeping on with good will.

Lucky girl, you get to say whatever you want! I think your nurse was not helpful in her reply but perhaps she didn't quite get your meaning.

Now, we all know its the squeaky wheel that gets the oil. You are your other halfs voice and you are the expert on how he is and what's happening. Now you need to make the health professionals listen and take notice. Insist on being St all meetings or reviews and demand answers. If one doctor doesn't know or can't help then demand a second opinion. Medications can cause huge changes in people. You may also want to consider requesting that your other half is taken in to hospital for a complete and thorough medication review.

Most of us are brought up yo be respectful and accepting of the medical professionals. They are mostly wonderful, but they are not Gods, they are human yoo. Humans can make errors, get things wrong or might not have the correct answers. You now need to find your voice and let it be heard. You can do this politely and with respect but they do really need to hear you. You are fighting your other halfs corner and you also need to be cared for. Have you tried approaching your local social work office? You are also entitled to have an assessment done as well. I very much think you are in need of some respite and if social work can't provide it they will know someone that can.

wishing you the best as looking after your other half is hard hard work. Carers just do not get the help and understanding they are entitled to. Wishing you all the best Luckygirl.

You are all very kind. Thank you.

I have nothing helpful to add, Luckygirl, but sending you love and support.

Two of the groups I attend have recently been completely spoilt by new members. One I am considering leaving. Such a shame. You ate quite right to put the group as a whole first. The suggestion of a chat with the pharmacist is a good idea. I had a review with mine recently and it was still illuminating. They r more knowledgeable about side effects and drug combinations. You have to keep pushing now to get the best out of the health service. Keep strong!

I emailed - a bit cowardly I guess but I simply do not need the hassle.

Thanks for being supportive. I had already had my fingers burnt with her previous behaviour and just don't have the capacity to deal with it again. We are such a happy group and have welcomed many people over the years who have gained so much from it. I just cannot see that blown out of the water.

Luckygirl - with regard to your musical group, you had a situation, considered it, and made a decision.

have you done the right thing you ask ---- Yes, you considered the situation and made what you thought was the right thing to do. That's enough, all that anyone can do.

If there is any flack - the lady can be told that her previous behaviour unsettled the group and that you had to reconsider the majority feelings.

Have you yet to tell her? If so, I hope it goes as smoothly as possible.

Nothing useful to say, just sending sympathy.