Hi, this is my first post.My husband was diagnosed with Parkinson in 2012.For the last 2 yrs he has had LBD. He has just come out of hospital after a fall and has gone down hill so much.
He is so confused and is complaining of severe neck pain, the pain is so bad he cannot open his eyes and just wants to be in bed. He looks as if he has given up and I feel so sad for him. I am given him paracetomal and putting a neck warmer on him, I am wary of giving him a stronger painkiller as this just makes the constipation worse.
I am so scared we are reaching the end stages of this dreadful disease.
Any advice would be really appreciated
Jeanie
Hi Jeanie,
I'm so sorry to hear that your husband is confused and is struggling with so much pain at the moment. This must be a very worrying time. This forum is a great place to find support and advice, and please do remember you can give us a call on 0808 800 0303 and speak to one of our Nurses - they will be able to give you more advice about what might help your husband.
Take care and best wishes to you both.
Joanne - Digital team.
Yes Jeanie I recognise and am at war with all the awful side effects of PD,,some days Im hardly able to bear my own weight, the only difference is its vvvsevere lower back pain, I have had two injections into my spine but the did not make any difference, so its a case of plodding on through all the horrible things your poor husband is having to bear but also the strain on you must be terrible and if he is showing signs of throwing in the towel, well thats a pity as this pig of a disease can be put back in its cage but the further down he goes the harder to get up as it were, pull in all the help you can Jeanie its all there , I wish you both all the very best in your war, with one of the most cruel of natures ailments
Regards FED
thank you so much for replying.
I have been in touch with my husbands doctor and his advice "consider a care home"!! no way, I shall fight this on his behalf to the bitter end.
Fed, I have read a lot of your posts, you are so inspirational. I have taken your advice. After speaking to his doctor i have been in touch with our local hospice and they tell me they would have him there for a few visits and have the pallliative team assess him but first he has to be referred by his doctor!!
Peter can't do anything for himself now, he had a fall which resulted in a hospital stay for nearly 4 weeks. Whilst in there he had chest infection UTI and the flu!! Alzheimer society are coming to see us on Friday, hope they can offer some help.
It's a lonely road for the carer,I am tiptoeing around all day as I don't want to disturb him. I did love walking but can't chance leaving him as when he's awake he constantly needs reassuring I am there.
jeanie
Thank you Joanne.
I have picked up the phone many times to ring Parkinson UK but for some reason just held back.We do have a Parkinson nurse but she is very hard to get hold of. I know she is really busy and has a large area to cover. I desperately needed advice on the rivastigmine patches, Peter had been put on a much higher dosage and I didn't know whether this was adding to his confusion.He seems to have settled down now. I have been in touch with the memory clinic and they are arranging a home visit as I can't get him into the car'
jeanie
Oh Jeanie I admire you dear Lady for your strength and resillence , and the unbroken loyalty to your poor husband, my wife behaves with the same outlook I never ever thought she would have to dress and undress me or if not fully assist me, dress, and feed me as often i DONT HAVE the strength to lift a spoon but thats what parky has infliicted on me and I think its only my stubborness that keeps me going when I try to talk about it she just says (in sickness and in health) so two Ladies same absolute dedication same moral compass you will support him until he leaves and moves to a much finer world than this and will be there when its your time, I lost my Dad Mum,and 3 good mates in less than a year the blows were heavy Jeanie and my head went down, but bowed is not beaten dear Lady and you can hold your head high knowing you have done everything you could Iknow these are just words and cannot assuage your pain and grief but when I think of my parents it comforts me to think of them exploring their new pristine world, and my Mother playing her piano with dad singing both fit and living to the full the next dimenson, when I think this way it seems to ease the sadess for a while and I hope it does the same for you dear Jeanie but keep on fighting where there is life there is hope and keep on pestering any one who will listen you are entitled to help in times such as you are suffering.
FEDexlike
Kindest Regards
Dear Jeanie,
I do so admire your steadfastness and courage and may I say loyalty, in the dealing with the level of illness and PD that Peter has.
Please take comfort in the way you are dealing with emotionally and physically draining circumstances in such a dedicated way.
Your postings and the beautifully crafted reply from Fedexlike demonstrates so well the level of this horrible disease as it afflicts one in what is called the later stages.
In some of my postings I may appear rather flippant but I'm fighting this disease with every piece of energy I can muster and my use of the battle metaphor is a way of dealing wth PD.
I feel somewhat humble when I read about the level of suffering and debilitation that advanced PD can inflict on us and how courageous sufferers and carers are. Particularly as, although I personally need some help and I know things are not going to get better, I'm still able to do many things that many PD sufferers find impossible.
Advice is so difficult to offer as Parkinson hits with so many weapons and the psychology and physiology is unique for each person and each person responds differently and medication is so problematic. I can only end by repeating what Fedexlike, says "keep fighting."
My thoughts are with you.
Jules77
Thank you both so much Fed and Jules.
I am sitting here feeling very emotional, some kind words and the tears flow!
I think i mentioned, Peter has Lewy body, hallucinations and delusions are horrendous. The nurse from the memory clinic visited and has now put him back on a lower dose of rivastigmine.I am learning how to react to the delusions, I would at one time try to correct him, now I just go along with whatever he is thinking and seeing.It is so hard to see this wonderful man like this, he was so much in control of all our household management, brilliant at D.I.Y. I have had to learn so much in the last few years.
He will be attending our local hospice on Thursday, dare I say I am so looking forward to this ( for me as well as him) I know they take excellent care of him giving him physio and the attendance of a neurologist.
Once again thank you for taking the time to post.
Jeanie