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Glad for Natasha that there are more of you for her to communicate with, but sorry to hear of your stories and that you are dealing with this.
My mum's diagnosis of LBD came after an unexplained fall followed by confusion; I got the District Nurses in, who then recommended a stay in the local Rehabilitation Ward linked with the Hospital. When we realised on her return from 4 weeks in rehab and she couldn't remember where her bathroom was, couldn't make a meal for herself, wouldn't wash, couldn't dress without assistance that there really was a big problem.
As she had been in the Rehab Ward we already had Doctor/Nursing/Occupational Therapists input and so Social Services were easily involved. Through them we were recommended a Care Agency, and twice daily carer visits were arranged to wash/dress/breakfast, then prepare for bed at the end of the day. Mum was provided with a Pivotell automatic medication dispenser via the Community Pharmacist (filled and delivered by her Pharmacy through the GP) after some muddled medications - she was on 7 times a day Stalevo, along with other meds (prior to the fall she had managed her complex meds by herself). Through SS she rented a personal care alarm pendant to wear (linked via her telephone line to a central call point); also a Keysafe box was fitted outside her front door so that the carers could get in and she didn't have to answer herself. The number for that was also held by the District Nurses, Police etc in a crisis. We also fixed up for "meals on wheels" hot lunch delivery with a cold snack for the evening meal. She also had cleaners who kept her house orderly.
We also visited regularly (from 60 miles away) to go shopping, do the washing, paperwork and so on.
Another major area was setting up Lasting Powers of Attorney for both Financial and Health & Welfare - these were registered but were only used latterly when she lost the physical ability (in her case rather than capacity) to do her own banking etc. All utilities bills were on a direct debit so that nothing got missed.
Her biggest problems were executive function - how to make things happen - rather than memory issues. She was still very much on the ball in conversation and everyday news events, but couldn't work, say, the television remote control. However, this fluctuated sometimes hourly, so sometimes she could do something, other times not, with no obvious trigger.
She was referred to the Geriatric Psychiatric Consultant who made the diagnosis of LBD. She was prescribed Exelon patches (Rivastigmine) which she herself reported as making her less "foggy", so that was a success in her case. She then received visits from the Community Psychiatric Nurse who kept track of how things were going. She also by then finally was allocated a Parkinson's Nurse - 7 years without anything other than her own efforts to manage her PD (through private health insurance and a very disinterested GP) before that.
Unfortunately a year after this another fall put her in hospital, and it became obvious that she couldn't return to her home safely. She then developed hospital acquired pneumonia twice, and her brain was damaged even further. She moved very quickly into end-stage PD, and her discharge to the Nursing Home was purely palliative.
This is written very pragmatically as an example of what support there is from outside agencies for handling early stage dementia, to help keep someone in their home, to manage the changes in ability. I haven't really touched on the emotional aspects - she was very aware of her fluctuating loss of abilities. We worked at keeping her world as calm and stress-free as possible, and tackled each new development as it arose. The role of the carer in this situation is a whole area that I haven't even started on! Plus all the other possible things such as special clocks, whiteboards, trackers, CCTV, managing continence etc etc etc....
Everyone's story is different, and how life with PD progresses in its own individual way varies, so I hope this hasn't upset anyone reading it. But I do hope that perhaps someone who is struggling with managing changed behaviours might be able to find help - but unfortunately you do have to make it happen and continuously badger to get that help. It took many calls and everyday ongoing input to keep this working - thus my username!
Thank you, all of you!
I feel so alone sometimes, it is good to know I am not completely so!
You are not alone, but sadly a member of a rather select club....
What is your story? I have written of my mum's, but as I said there is another whole story to do with the carer, and how they manage to fit in some life of their own around caring.
Unfortunately by the nature of this socialising with the PD person can be difficult, and it is not very easily understood by those outside of the situation; I only found that understanding with others who were also experienced, but then that tends to be the dominating factor. Black humour ends up releasing a lot of tensions!
Hi there, Natasha.
I'm glad you've got some helpful responses from fellow forum users. Don't forget the helpline is always available too if you feel you require further support/advice or just want a 'listening ear' to talk to in confidence.
Thank you Platespinner, Luis, Worral for opening up to me and offering help.
What I find the hardest sometimes is the lack of communication and exchange of ideas and support from my adorable husband (through no fault of his own of course).
I am married but on my own assuming all the major responsibilities of everyday life. A carer comes for a few hours 3 times a week and I can go shopping for food.
Also, I am the Power of Attorney acting on his behalf but if if I die there is no one to take over. This is at times making me very sad and unsettled as my husband cannot write at all now or speak fluently any longer. I know there are the Social Services but to my shame, I do not trust them after what we witnessed in the Press.
The thought of him going into care makes me shiver.
Sorry I overlooked you (unintentionally).
Only once my husband accused me of having "a lover" next door (in his imagination). They do all sorts of tests before they confirm the diagnosis of dementia. Thank you for your support and I hope your husband does not have that.
The hallucinations could be a side effect of the medications.
Hello Natasha, Was reading your posts and thinking that what we go through as carers related to the person we are caring for is a grieving process, like we are a carer doing a difficult job and then we are also grieving for the person we once knew and who supported us and now although we still love this person it is a different person and ill and vulnerable person, where once they supported us when we felt vulnerable??
We dont help ourselves if we stress about possible futures which may or may not happen. I know I could become completely panic stricken at the thought of mine having to go into care, but have stopped thinking about it and decided that if it comes it will happen if I can no longer carry on.
Its a very lonely road for us from one perspective.
From another perspective we are doing a very good and kind thing. For one human being to care for another when that other is down and vulnerable is true humanity in my view
lots of love Natasha
My life with my husband seems very similar to "Worrals" The only difference is he doesn't talk to the people he sees. I am new to this site...but it good to know I am not alone in this.
I was really pleased to find this thread, because my husband was diagnosed with dementia a few months ago, almost 5 years after his initial diagnosis of Parkinson's. He's had lots of tests, and we're now waiting to hear if this is Lewy Body Dementia. Though I'm not sure that it makes a difference as a neurologist told us the treatment is the same.
He's been on the Exelon patches for two months now, and several people have commented that he seems keener and more engaged. Weirdly (or not?), the patches also seem to have eased his PD symptoms a bit, so he's stopped using a walking stick indoors and we've been able to reduce his medication slightly.
It's just like platespinner said, long term memory's not much of a problem, but his executive functions are certainly affected - stuff like logic and planning, also motivation and perseverance - his working (short term) memory is pretty poor, and yes, I've seen him trying to switch off the telly with his mobile, etc.
This is a one-way train, and I just want it to go s-l-o-w-l-y.
All the best,
Hi Sunray,Jay and Mariel,
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.