Finally got a diagnosis

[mary2000]

After two years of being told hubby had mild cognitive impairment etc and asking for further testing and being so concerned about him and his general health, he was finally diagnosed last week with Lewys Body Dementia.

He seems to be taking it ok at the moment although I don't really think he understands the full implications of it. I feel sad and relieved if that is an odd combination. So sad he has it and I worry about the future but relieved we will now have access to support and help.

He is to see a consultant in September and then will get access to the Dementia Advisor. Obviously so much to take in and learn and at the moment we are taking things day by day.

You have all been so supportive over the last couple of years as we have struggled to get a diagnosis so I thought I would tell you where we are now. Thanks again for listening and being here and hopefully I will post more frequently now and get up to speed with everything.

Best wishes.

 

[Juliematch]

Hi Mary.I can understand how you feel at last having a diagnosis. My dad also has Lewy body dementia.He was diagnosed about a year ago and we've had a very mixed year. I hope you get the same help as I have been lucky to have.The Geriatrition has been great.After a really bad 4 months this year dad is now taking quetiapine for his hallucinations and rivastigmine to help slow down the memory loss.Hes like a different person at the moment.Not sure if it's the drugs or just his dementia taking a rest till the next infection kicks in. I hope all goes well for you and please keep posting as there are not many of us LBD about and it would be good to share experiences. Best wishes to you both. Julie

 

[LynneMcV]

Hi Mary,

I think we all understand that feeling of sadness and relief - as you say, at last you now have a diagnosis and can access much needed services.

I am sorry for the diagnosis but pleased that you will both be able to access support. Good luck and keep us posted

 

[mary2000]

Hi Mary.I can understand how you feel at last having a diagnosis. My dad also has Lewy body dementia.He was diagnosed about a year ago and we've had a very mixed year. I hope you get the same help as I have been lucky to have.The Geriatrition has been great.After a really bad 4 months this year dad is now taking quetiapine for his hallucinations and rivastigmine to help slow down the memory loss.Hes like a different person at the moment.Not sure if it's the drugs or just his dementia taking a rest till the next infection kicks in. I hope all goes well for you and please keep posting as there are not many of us LBD about and it would be good to share experiences. Best wishes to you both. Julie

Hi Julie thank you so much for your reply. I am sorry you have had such a mixed year with your dad but I am glad he seems to be responding to the tablets (or hopefully so) and I hope that continues. We will have to wait until September to find out if there are any drugs that can help him. At the moment his unsteadiness and memory loss seem to be the main issues. He was having awful night terrrors and lashing out in his sleep but the consultant last year put him on a drug which has pretty much stopped that which is good. I will definitely keep posting. I feel this is going to be a long road and so much better to travel it with people who completely understand. Thank you again and please keep in touch too. Mary

 

[mary2000]

Hi Mary,

I think we all understand that feeling of sadness and relief - as you say, at last you now have a diagnosis and can access much needed services.

I am sorry for the diagnosis but pleased that you will both be able to access support. Good luck and keep us posted

Thank you for replying Lynne. I appreciate it. Yes having the diagnosis certainly opens more doors for help and support which is such a benefit. I know I spoke with someone locally earlier this year and they said there was lots of help available but he needed a diagnosis first so now we have that. Talk about a double edged sword though.

Thank you again and I will definitely keep posting now

Mary

 

[Margaret59]

Hi Mary,

I'm sure that everyone can relate to how you are feeling. I care for my OH and we are expecting to get a formal diagnosis in the next few weeks. I must admit that even though we don't know everything yet we are aware of cognitive impairment and visual spatial problems.

However I think, that like you, it will come as a relief in one way to finally know for definite the extent of things and yet in another it's really quite scary.
I keep telling myself that after 6 months of waiting, numerous hospital appointments, visits to specialist, 3 different scans, CPNs and Support workers etc I should be well prepared for whatever the outcome is.

I worry that my OH will still be unable to make any sense of it all. He obviously knows as much as I do at present but constantly says that nobody has told him anything, that he doesn't know what's supposed to be wrong with him and tells everyone that he's fine.

We had a moment today when I wished the ground could have opened up and swallowed me ----- we met a friend whilst out shopping and my OH mentioned that he hadn't seen her husband for a few months ago. He then said it was after a funeral but he couldn't remember whose funeral it was. OMG , I felt awful. The funeral we had been at was actually her father's and he had known him since he was a young boy !!

Anyway, like you, I am still feeling my way along. Very new to it all really. I've had a lot of helpful advice, and support from other people on TP.

One thing I have learnt lately is that in relation to any entitlement as far as benefits go ----- if you don't ask they don't tell you. I have recently found out that I could have been claiming and it can be backdated, but only for the 4 months prior to my claim.

In retrospect I have to say that my head has been all over the place since February but I have now starting doing memos to myself ref checking out what help is available and I also have a BIG diary which I refer to daily. All of the teams involved with us at the minute have also been amazing. I even get one hour a week to put my feet up whilst my OH goes out with the support worker. Maybe doesn't sound a lot but I get chance to relax. Last week I had a long soak in the bath as opposed to a quick shower!

Take care, love and hugs, Margaret x