anyone any experience of parents with dementia? poss sens

My wonderful daddy is undergoing tests but it is thought that he has early stage dementia (please anyone who knows me IRL or on FB don't mention this as we haven't told people) he is only 65 and only retired 2 years ago so still seems so young.

does anyone have any experience of this and how to deal with it? my parents aren't local but we are hoping they will move over this way in the future.

I would be grateful for any advice

thanks

I'm so sorry to hear this.  I have no experience of dementia myself but my mum works with people who suffer from it so know that it can be tough thing to deal with.

I hope you get some helpful advice, I've had a quick look on google and there seems to be a few websites which offer some guidance that could be of use to you x

My nan has dementia so no experience of a parent but have witnessed the effects it has on a family.

My nan has Vascular dementia which I think is mini strokes on the brain which gradually makes her worse and worse. She is now doubly incontinent, unable to speak and fading away before our eyes, my grandad doesn't want to put her into a home. The saddest thing for me other than watching my grandad go through this is that she isn't my nan any more but she hasn't died so haven't had a grieving process to follow, she just has a vacant look in her eyes.

As a family we laugh and joke about most things so generally try to put a face on a laugh when she does random things like hiding false teeth, pooing in the garden, falling head over heels into the pond and looking likr the creature from the deep but it is hard.

My nan goes to day care 3 times a week, and into respite now 2 weeks on 6 weeks off which has helped to release some of the pressure for my grandad but he feels so guilty even for that. He goes to a dementia club for carers and gets support from others going through the same, My mum and Aunt help out when they can and I try but with 2 kids its difficult to take on much.

Contact your GP amd local council for advice on respite, care at home etc for when times get harder, in the very early stages your dad may be able to get medication to slow the process. also check out sites for dementia they will have lots of advice on how to cope.

If there is anything specific you wand help with let me know and I will ask my mum

Sorry to hear you are going through this. You might want to think about telling people so they can support you and your family, it is hard fo you though as it is quite alien to alot of people and they don't know how to deal with it so sometimes shut off xx

Hi Anastasia,

So sorry to hear about your dad. My mother was diagnosed with demenia and alzheimer's two years ago, but she was already considered as moderate to severe. She lived with me for a few months but I struggled to cope when I became pregnant with my second child so she moved in ith my sister.  

Dementia is a very cruel illness and very hard to watch your parents go through. I am by no means an expert but if you have any questions  I will try and answer them. I have to go out now but will check back later

Sending you

My Grandmother lived with us and sufferd from dementia, we realised after she died she probably had it for quite a few years before she finally was diagnosed. She gradually got more forgetful and then a bit suspicious of people,and then doing some odd stuff like not wanting to change her clothes, hiding things, she went into a home when she became a risk to herself because both my parents worked and she couldn't be left alone, she settled in very quickly and was very happy, she didn't lose her ability to go to the loo and stuff like that though. My FIL also had some form of dementia, but he just seemed to live in this fantasy world that sounds funny when you re-tell it, but he thought he was a gangster one time we visited, and another time he thought the RAF were going to call him up!He was in his 80's when he got a bit too much for his wife to look after as she was so frail, and he was in a nursing home for about his last 6 months.

It must be very scary for you, and although people can share their experiences no two cases are the same and there is some really good organisations that can provide help and information on how to help and look after someone with dementia and sometimes there are drugs that can help too, so try to keep positive.

Best wishes to you and your family

thank you for replying.  he has a brain scan in a couple of weeks to rule out mini strokes but they don't think it is that (although my great aunt had that apparently)

I have started to tell some of my friends but I don't want to invade Dad's privacy so to speak by telling people before he is ready. he is still completely with it in so many ways but he struggles to write and has lost the ability to do maths etc.  I have ordered the dementia information pack from the NHS website now and printed some stuff out for my mum to look through.  I suppose we have to wait until after his brain scan and see what they say then and then Dad needs to think about telling close family and friends I suspect.  I think he is relieved now he is seeing people about it but he must be scared stiff and as for my mum with no family round them I can only imagine what is going through her mind. they thought they had this whole retirement future ahead of them with their granddaughters and holidays etc and now they are wondering what will happen.

I don't think I have any particular questions at the moment thanks but it does help to know others have gone through similar.  it is just so hard to imagine my very intelligent wonderful daddy being affected like this, it seems so unfair.

Not a parent either, but my grandfather was diagnosed with Alzheimer's when he was just 55 and I helped my grandmother care for him in the last year of his life.  She was determined to care for him herself and not accept help from anyone but me - in fact it took years for her to admit he was suffering.  As someone else said here, take all the help you can get - respite, help in the home, anything.  Caring for a member of your family with dementia can be very wearing - not that we weren't happy to do it, but it is difficult.  

I'm really sorry that your father is being affected - you are right, it is horribly unfair and cruel

thanks Mixie - I think my mum is very aware of trying to find out about help for when they need it etc and I know she would ask, there is a limit to what she can do herself with arthritis anyway.

No direct experience but hugs x

Sorry to hear that you are going through this.

My lovely Mum was diagnosed with early onset Alzheimers when I was 20 and she was in her mid 50s.  She deteriorated very quickly and by about 2 years later she no longer recognised me, a couple of years after that I hardly recognised her and she certainly wasn't the loving, sweet woman that brought me up.  After many years with very little quality of life for her she passed away from a severe chest infection when I was 29 and she was 64.

The only advice that I can give is to involve social services, Alzheimers concern, anyone that can help and get all the advice and practical assistance that you can.   Your Dad (if diagnosed with this) will have good days and bad days for quite some time yet.  Treasure the memories an cherish the good days, and try to stay strong through the bad ones.

Sorry if this sounds a bit negative, I have to say that I did not cope very well at all with my Mum's illness and now my main regret is not spending enought time with her in hte early days of her illness.

thanks Noo, sorry to hear about your mum. I think it must be one of the hardest illnesses to deal with because you need to grieve much earlier than you actually can if that makes sense.

thats one of the reasons they are looking at moving nearer us so that he can spend as much time with my children as possible whilst he is still mainly having good days.

Anastasia:

thanks Noo, sorry to hear about your mum. I think it must be one of the hardest illnesses to deal with because you need to grieve much earlier than you actually can if that makes sense.

 

No that makes perfect sense.  When she finally passed away I felt an overwhelming sense of relief and sadness but no real feeling of loss as to me she was lost many years before she actually passed away.  Feel free to PM me if you ever need to vent, I'm not around on here as much as I used to be but (hushhush) H and I are starting to TTC #2 so I may be about a bit more.

I`m so sorry to hear this Anastasia ... It`s unfair that he`s going through this when he should be enjoying his retirement.

It`s true that dementia doesn`t affect only the sufferer but also the rest of the family & anyone else close to them.  My Mum showed was showing symptoms of Alzheimers in her mid forties & was diagnosed a few of years later. Getting a formal diagnosis was the hardest thing because she was completely in denial & I couldn`t force her to see her GP.  Unfortunately my dad died quite suddenly just before she was diagnosed so her her care fell primarily on me  (I`m only child).  She managed to live independently, with lots of help, for a while after he died but eventually I moved her in with me. She was with me & H for about five years & it was the right thing for both of us. Unfortunately there are few facilities for younger people with dementia. Most people witth Alzheimers/dementia are much older & tend to be getting weaker physically too, she was very fit & spritely so it was difficult to find appropriate respite.

I understand how hard it will be for all of you if he is diagnosed but it also means he will start to receive treament that will enable him to live as full a life as possible. Whilst sadly there is no cure, it can be slowed down & he will live as full a life as possible.  The Alzheimers Society are fantastic for help & support & will do all they can for you.  There should also be a monthly carers` meet locally, mine was a complete Godsend.  I was also a media volunteer for them so if I can help in any way then pm me anytime.

Big hugs, I know how heartbreaking it is to watch someone you love so much going through this

thank you

I suppose at least we have hopefully caught it relatively early which with any luck means it can be slowed down a bit and we have time to adjust to it and try to live with it.  Makes you realise how important it is to cherish every day with someone though doesn't it.

thanks

No direct experience, but sending you lots of

xxx