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[grracee]

Around this time last year my grandad was asked to go to a specialist as it was suspected that he had parkinsons. After a few months he had been put on medication for parkinsons, as he was reacting well with it they changed to a stronger pills and upped the dose, at one point he was taking 7 pills a day.

After a while of taking these he didn't react to them very well, was starting to show huge signs of memory loss, and after looking up the pill, Sinemet on the internet we didn't find much positive said things about people who have been taking them, someone even explained their family member "going mental and having to be put in a mental home".

So then my nan decided he wasn't going to take them anymore, but i think they had already done the damage and since then it has all gone down hill and he is now in a bad way.

As I have stayed with my nan and grandad for nearly 8 years now, since i was 11 it's really hard to see my grandad turn into this person i don't know anymore. It's really suprised us all though, in September 09 he was down at my dads cutting the hedge, mowing the lawn etc. and now he finds it hard to walk without falling over. My nan & rest of the family are now having to consider him perhaps having professional help in a residental home but he is getting to the point where he is up all night and is starting to injure himself, how many times he has hit his head and fallen over i dont know!

This disease really horrible and i never thought someone like my grandad would get it but it just shows anything can happen i suppose. I really do applaude the people who care for people with dementia though, it must be really difficult! I help my nan whenever i can and i even find that hard sometimes.

Sorry about rambling but i just felt like blurting it all out!

[Ain't Nobody Here]

I'm so sorry to hear that, Grracee . It's heartbreaking when someone becomes unrecognisable from the person you knew. It sounds like you're being a real support to him and your nan but it must be very distressing.

 

My dad ended up in hospital and then a nursing home after he started falling and hurting himself too. It's very sad but at at least then you know they are safe and have people on hand immediately if there is an injury.

[Aunty e]

Hi graccee, my dad has parkinsons as well, he's had it for a very very long time. One of the sad things is that an associated symptom of Parkinsons can be dementia, and that dementia and balance loss can come on very suddenly and it might not be anything to do with the medication. The dementia is caused by a thing called Lewy bodies, which you can look up if you want to see more information online.

 

Having said that, one of the things that we've learned about living with Parkinsons is that altering drug dosages can produce really good effects. You have to balance the benefits of sinemet with the disbenefits. Some of the drugs, like apomorphine for example, can have very strong effects on the mental state of the patient, sinemet can produce confusion but what you describe sounds more like the effects of the disease than the medication. I'm really sorry that you're going through this - it's very hard and the support you provide for your grandma will be really important to her. Sometimes the only thing is for the person to go into an environment where they can be looked after by professionals, and it stops them hurting themselves. My dad fell over and broke his hip a couple of years ago, and hasn't really been able to walk since (not entirely the break, the stoopid hospital put the wrong false hip in when they fixed it) and he's always falling over, it's getting more and more difficult for my mum to get him back up again.

[Chickendoodle]

I am so sorry. My Dad also had Parkinsons and it is a truly horrible illness. He was very stubborn and refused to go to the Doctors for years and so when he finally started on the medication it was too late to do much good.

 

There is a fantastic organisation, the Parkinsons Society http://www.parkinsons.org.uk/ and they may be able to help you.

 

In our area we have a specialist Parkinsons nurse and you should see if there is one available in your area as they know far more than most doctors. I have to say that the medication does help and it has to be taken at set times of day and in a set order - it is a case of trial and error until the right dosage and combination of tablets is found. The medication should be able to keep your grandad on a pretty even keel (you will learn to recognise when he needs a particular tablet as some control the tremors, some the rigor and another one to relax the muscles to enable the sufferer to sleep)

 

There are great strides in treatment all of the time and in my opinion just not giving him any medication is a bad idea. I suggest you read Michael J Fox's autobiography also which is very inspiring and also pulls no punches - medication IS necessary and could give your grandad a decent quality of life. He may react badly to some, but as I say a nurse or doctor with specialist knowledge will be able to find the right combination eventually.

 

My Dad by the way was on around 20 tablets a day and they did help.

[Chickendoodle]

Forgot to say - the Parkinsons Society have people all over the country and there should be someone near you who could come and talk to your family and see what they could do to help.

 

It is a voluntary organisation and you can get involved if you want to in events and fundraising. Their information on the website is also brilliant.

[Olly]

So sorry to hear that Grracee. My dad also had Parkinsons' and sadly, the outcome was as described above - he began to have falls, had to be admitted to hospital and then a nursing home, and eventually developed dementia. It's certainly not always to do with the medication - a lot of people think Parkinsons just means shaky hands, but there are many other features of this horrible disease.

 

Good advice above about people to contact who might be able to help.

Can't offer much more than sympathy, I hope you can get some more information which might help you and your nan to understand the situation.

[henriette]

It is certainly very hard and sad, caring for a relative who has Parkinsons. You are doing a great job being supportive as this is really essential. My Mum had Parkinsons for many years and took a cocktail of goodness knows how many pills. In the end, she was taking more pills to conteract the side effects than anything else. My Dad also ended up with Parkinsons so unable to cope with both of them I had to agree that the only solution was for them to have to go into a care home. This was, however, much better for them in many ways. Both of them fell over a lot and my Mum had really serious dementia. They always seemed to know when anyone was trying to help them though. Your Grandad will know you are helping him and your Nan will certainly benefit from all the kindness you are showing her.

[Alis girls]

Gracee - has your grandad seen anyone about coming off his tablets. He needs assessin for dementia properely as strokes can cause vascular dementia which is different to Alzhemers (sp) . Also falls can be due t ear probs, low blood pressure - he needs a proper going over and I can see why your gran took him off the pills but she does need him assessing - for help rather than anything else. Shes lucky to have you - if is horrid seeing a loved one confused - been there and its so sad. Lots of hugs

[Alis girls]

Apologies spelt your name wrong sorry Ali x

[Cinnamon]

Hi Grracee,

 

I have had first hand experience of this sort of thing too,although it happened in a different way.

My Mum was 63 when she fell down the stairs & suffered brain damage,leaving her with dementia like symptoms. She couldn't talk,had trouble eating,& didn't recognise me,which I found really hard,as we had been very close.

 

Your line that you see your Grandfather turning into a person you don't know says it all for me,although in my Mums situation it was a quick change rather than a slow one.

 

When she came out of hospital she went into a secure residential unit that actually housed Dementia patients...it had to be secure as they did try to 'escape' often

It was actually fantastic there, with a high staff to patient ratio, & Mum spent the last 5 years of her life there before passing away last February.

 

It is so hard seeing a person as you have always seen them,but no longer knowing them.

I could not visit my Mum often as I just found it too upsetting - I preferred to keep the happy memories of the person she was. Some members of my family thought that I was rejecting her,which was hurtful too

 

I can only praise the care my Mum got in her nursing home,& hope that you find a similar solution for your Grandfather

[grracee]

nochucksyet - he has been assessed often by going back up to the specialist and recently had a nurse come to the home to assess also. sorry, with the tablets i didnt explain properly, when he used to go to the specialist my auntie who took him up there explained about the side effects they were causing and the specialist said that if we wanted to we could take him off the tablets and she replaced them with a patch that goes on his back that does the same sort of thing but he doesn't react to them as bad as he was with the tablets.

 

cinnamon - so sorry about your mum, it must be awful. like you said for your mum it was the same for my grandad the "change" in him was so rapid, it was like one day he was the old usual grandad then the next you don't know who they have turned into

 

it's just horrible, horrible stuff and i feel so sorry for anyone else out there who has it or knows someone who does.

[Alis girls]

Don't worry re explanation least of your probs. Have you tried the talking point on Alzermers (oh I'm a nurse I should be able to spell darned word) its like this forum friendly and full of support and great advice re dementia. My dad has vascular demnetia and after last stroke was awful. Hes ok now but we had some blips. Also think about power of atorney if you havent already. Google it - its worth it incase anything happens to you gran. I dont know your age but you sound a great support. I was very close to my gran RIP.

[grracee]

Thanks for the advice, shall look some of the things up that people have mentioned.

I'm 19 in april and very often my nan has told me how she couldn't have done most of it without me and how good I am but to be honest im just glad i can help, if not grandad all the time i can help her

[Chucky1]

Hi grracee, just wanted to say I sympathise. My Grandad was also a sufferer and now I think there's something in my eye.

 

Good Luck

 

Paul

[Seagazer]

grracee - sorry I have no experience in this but I just wanted to say that you sound like a lovely young lady helping your grandparents like this. I'm sure it means everything to them.

[Christian]

Just wanted to add a huge hug to you Grracee. The people who live with those suffering from dementia are often forgotten and need a cuddle sometimes too.

 

You are very lucky to be able to support both your Granddad and Nan.

 

DO contact one of the organisations mentioned in this thread. Sometimes talking it through makes things clearer and they might be able to offer advice you hadn't considered before.

 

Wishing you all he best.

[Chickvic]

Just wanted to add a huge hug to you Grracee. The people who live with those suffering from dementia are often forgotten and need a cuddle sometimes too.

 

You are very lucky to be able to support both your Granddad and Nan.

 

DO contact one of the organisations mentioned in this thread. Sometimes talking it through makes things clearer and they might be able to offer advice you hadn't considered before.

 

Wishing you all he best.

 

 

My sentiments too, we have an aunt with Alzheimers and it's not easy watching the decline

[hilda-and-evadne]

The dementia is caused by a thing called Lewy bodies

 

Lewy bodies are implicated in only a rare form of dementia.

 

http://www.alzscot.org/pages/info/dementiafacts.htm

 

Take care of yourself, too, Grracee. As a young girl of 18, going on 19, you have your own life to lead, your own potential to be fulfilled.

[sparkysmum]

Gracee i have no experience of this either but I just wanted to say that you sound like the best grand daughter in the universe Well done you for being so thoughtful

[cathybc]

thinking of you x