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Dementia - anyone got any experience of this?

(28 Posts)
SpringChicken Thu 11-Dec-03 12:44:52

My Granddad has been diagnosed as having Demensia - i am very very close to my granddad and to say this situation has been heartbreaking is an understatement.

Basically it all started with little things he was doing like having his TV really really loud - he lives in a maisonette so is obviously unfair to the people who live above him - however, no matter how many times you asked him to turn it down he would always have it ridiculously loud - we got him a hearing aid fitting which he wont wear.........................there are lots of other things he has done to which we all just thought he was being lazy, not wearing his hearing aid etc.
For the last year he has been very unwell - he had a stint of 10 weeks in hospital due to bronchitis and secondary infections - being 80 this obviously hit him hard - he then went into residential care for a few weeks to be rehabilitated.

My mum deals with all of this herself - she has always been the apple of my granddad's eye and they are so close it is unbeliveable - my mum has a sister who lives about 200 miles away and 2 brothers - my aunt cannot help the fact that she lives 200 miles away but my so called "uncles" live less than 15 minute drive away and do absoutely nothing - they think because my granddad lives a few minutes walk from my mums house the she should deal with everything herself and it is taking its toll on her big time - she can't sleep from constant worry!

The Doctor and the top consultant for the eldery within our area have both diagnosed my granddad with Dimensia and advised he needs residential care - however, social services decided that the word of a doctor and senior consultant were not good enough and they didn't see my granddad's case bad enough to require residential care!

My mum has pushed and pushed and pushed until finally today he has been given a place in a residential home over the Christmas period - my mum is on holiday as of Monday and therefore wont be around, hence why she was pushing so hard for him to be put into some sort of care over Xmas.

She is now in tears as she has got to break it to my granddad that he is going into home - he has already asked her today if she is calling the police to come and take him away.
I don't really know why i am writing this but just felt like i needed to get it all out.

The home my granddad is going into in just behind my house therefore i can go and see him everyday and make sure he knows that we all still love him and just because he is in this place doesn't mean no-one cares about him anymore but i am absolutely petrified.
There is no way my granddad is being just left in this place without any visitors so i will go even if it kills me but i just know how horrible it is going to be - not only will i have to see my granddad there over Christmas without any family with him but all the only people with varying degrees of Dimensia - i just don't know how long i can do it for.

He is going in this afternoon so it looks like my horrid visits are beginning today.

MUM2ELA Thu 11-Dec-03 13:02:10


Poor you

I think I know how you are feeling at the mometn (to an extent). My DH's grandmother was diagnosed with this last week. It seems she has been having mini strokes over the last few months - symptoms like asking you the same questions repeatedly, forgetting the last time you visited, putting dinner on and forgetting all about it.

Like you, DH's mum has to take care of her all by herself. Her only other daughter lives in Canada and came over for my wedding earlier this year and it didn't look like she would come over again, but since the diagnosis, she has booked to come over for a week in January to help.

All I think I can do for you is sympathise. I try to visit her twice a week but it is hard, so if you were able to visit your grandad every day he would think you were wonderful (although he prob does now already), but if you can't, don't feel guilty, he knows you have your life to lead as well. And please don't take this the wrong way, but he may not rememeber you visiting last time anyway.

I am sure he knows you all still love him, once he is in the home he may enjoy the company he gets there, especially over Christmas.

Let us know how he gets on.

Lots of cyber hugs.

SpringChicken Thu 11-Dec-03 13:42:43

Thanks Mum2Ella,

Unfortunately we know he wont enjoy it - hopefully he will prove us wrong but he is so independant he just hates anything like that.
When he was in hospital all he asked every single day was "when can i go home"!

Up until 12 years ago he would never step out of the house without a suit on, being freshly shaved and his hair done but since my nan died he has just given up. He isn't interested in looking smart or being cleanly shaved but to be honest who can blame him!

It's just horrible as the person we see now just seems like someone else - it's like my granddad at all and that's what so horrible.
He was always sucha character, always had people laughing and was forever cracking jokes - it's just not nice seeing him this way!

SpringChicken Thu 11-Dec-03 13:45:16

Sorry i meant "It's not like my granddad at all"

Jimjams Thu 11-Dec-03 13:54:23

Spring chicken my grandmother has dementia. Frst signs were difficult to see- she would repeat herself a lot (eg say the same thing 6 times in 10 minutes). Now she is at an advanced stage. She eventually got to the stage where she was unsafe to live alone (my grandfather had died- and she was getting more and more confused, would try and walk 10 miles to the nearest city to get some money- she was always convinved she had no money- although when her flat was cleared she had hundreds of pounds hidden around it).

Eventually SS agreed to residential- but only after my mum told them that if they didn't she would hold the SW personally responsible for anything that happened to her. That threat worked (she's a community nurse and says to have to push is normal). There are legal things you can do but I don't know much about that side of things.

The home she moved into is great-very caring- and has made the last years of her life happy.

sykes Thu 11-Dec-03 14:02:43

Haven't had time to read this properly but will. My mother died two weeks ago of Alzheimers and my father did years ago so, unfortunately, I have an awful lot of experience. Please contact me directly if it would help, Also, another thread a few months ago that I asked for help on and other people also have experience. I'm so sorry, it's heart breaking. But there are things you can do to help, also the Alzheimers society is helpful and can put you in touch with other relatives. I'll read properly now and post asap. So sorry.

sykes Thu 11-Dec-03 14:02:59

Haven't had time to read this properly but will. My mother died two weeks ago of Alzheimers and my father did years ago so, unfortunately, I have an awful lot of experience. Please contact me directly if it would help, Also, another thread a few months ago that I asked for help on and other people also have experience. I'm so sorry, it's heart breaking. But there are things you can do to help, also the Alzheimers society is helpful and can put you in touch with other relatives. I'll read properly now and post asap. So sorry.

MUM2ELA Thu 11-Dec-03 14:11:06

Spring Chicken - I know what you mean about them being independane - its exactly the same as DH's gram. She still lives in her own home, cannot really walk very far, but refuses to go into a home.

Perhaps, as your Grandad is only in the home over Christmas, he may enjoy it and see it as a break - its not forever - and it will give your mum a well deserved break too. After Christmas then your mum will feel refreshed, and you never know, your Grandad may think it wasn't as bad as he thought it would be.

I think because you do not know how these things progress (the condition, I mean), and each case is individual, you need to takeone day at a time and see how it goes.


sykes Thu 11-Dec-03 14:12:26

Do you know what stage his dementia is at, I think there are maybe three stages. The first and second are very hard for the sufferer - my mother threatened suicide and was convinced she was going mad, well, I suppose she was. Some drugs can help, although some local authorities won't fund them so you have to do it privately. My worst thing was that I refused to acknowlege what it was initially -I was the sole carer - and to see the person you love change so radically is one of the worst things I've ever experienced. Everything needs to be simplified for them and hte more you can do with them at visits the easier you may find it - ie, playing dominos, looking at old pictures/phtotographs. they love reminiscing as long-term memories tend to stay. It's veyr hard to hold conversations - impossible towards the end - so these things can help. Visiting homes which are soley dementia can be soul destroying. My mum had dementia for about five years and initially we could still take her out (albeit in a wheelchair) just for a walk and still go out for lunch/dinner. It gets more complicated later on. Please do get in touch if ~I can help as there are things that I wish I had/hadn't done and if it helps in any way, it helps me too. Again, so sorry.

sykes Thu 11-Dec-03 14:21:25

Hope I haven't upset you - just read some of what I've written - it's very raw as mum only died last week, but really hope I haven't upset you. sorry.

MUM2ELA Thu 11-Dec-03 14:25:29

Sykes - Your info is really informative and relevant for my DH's gram at the moment. So sorry about your loss.

SC -let us know how your grandad is.


SpringChicken Thu 11-Dec-03 14:27:31

JJ: This sounds just the same as my granddad - he too says the same thing over and over again - half way through a sentence he seems to forget what he was talking about and just trail off.
I just feel so awful now for thinking that my granddad was just doing these things to be akward.
Social services reason where that he wasn't a threat to himself or other but this my mum went to see him, he was standing at the front door with a bread knife in his hand with no trousers on.

Sykes: Thank you so much - We are usure how advance the dimensia is but he keeps putting the washing machine on with nothing in it - we have meals delivered to him daily but he forgets they are they and just eats cheese slices and banana's.
My mum takes money up to him every week so he can give his carer money to buy the papers but he hides it and forgets where it is.

When he realises he doesn't remember something he gets himself into such a state over it he just lies - when he went for his assessment with the consultant asked him if they were on the ground floor or if my granddad had got in the lift - granddad replied they had got in the lift and gone up to the 3rd floor when the whole place was on one level!

Thanks for the suggestions about looking over photograph's - he has 2 picture's he takes everywhere with him no matter what - one is the last photo of my nan before she died and the other is of me and my nan together at her retirement party - no matter where he is you will always find those 2 photo's in the breast pocket of his shirt.
I think i will try and gather some photo's up but i don't want to upset him so it could be hard - he does love talking about the good old days but still gets choked talking about my nan who he still refers to as the love of his life.

sykes Thu 11-Dec-03 14:39:50

SpringChicken, I'd try and get a specialist to see him asap. I went with my mum for the "test", which she found patronising and offensive, despite the best efforts of the consultant. However, the test was useful re medication etc, etc. The home my mother was in was anti medication unless, obviously, a person was distressed/needed it - but the point was NOT to drug them up to keep them quiet. My mother spoke to photographs and hallucinated quite badly. Also, would start off cooking lasagne and by hte time it wsa finished you really wouldn't know how it started life. Remember another memorable meal of baked potatoes, chips and roast potatoes .... The wandering can become an issue - my mum "escapted" from her home and we had the police etc out. Did find her, but God it was worrying. Physical contact can be of great comfort to them, but also expect them to undergo personality changes - my mother became quite aggressive and normally wouldn't have dreamed of even raising her voice. She also reported missing children to the police/would call me up to 40 times a day, blew up the microwave and constantly packed and repacked suitcases. Eventually her carers couldn't support her so a home became essential. My mother had fairly child like tendencies in her illness and liked to look at my childrens' books/simple games etc. Thinking of you and make sure you get as much help as possible - really chase social services, your grandad deserves it.

wilbur Thu 11-Dec-03 14:55:55

SpringChicken - I think Sykes's advice is very good so I have nothing practical to add just huge sympathy for your situation. My grandmother had demetia for about 10 years before she died and had to go onto a home for the last 7 or 8 years of her life because she used to wander, fall in her flat and so on. One thing I would say is that although it was hard at first, she did make some friends in her home, and even though it was not fancy in any way, the people were very kind and helped her a lot. I was just into my teens when she went into a home and I really didn't mind the visits - I think the younger you are the less distressing it is, so perhaps visiting with children would be a nice may to cheer up your grandad.

Sykes, I'm so very sorry to hear about your mother. I lost my father in the summer, and my mother died a few years ago, so you have my very deepest sympathy. Feel free to email me direct if you want to offload.

sykes Thu 11-Dec-03 14:59:03

thanks, Wilbur, also agree about taking children in, if possible, it certainly increased my mother's popularity, although towards the end she was quite unpleasant to dds - but certainly great at one time. And it cheers up the other residents.

SpringChicken Thu 11-Dec-03 15:16:11

Thanks everyone - well granddad is there now - mum and her useless brother took him at lunch time.

They explained to him that it was just for a few weeks and it was for the best as it would make him strong enough to be able to do things on his own again - he agreed, reluctantly!
Up until a few months ago he used to walk to the shop everyday to collect his papers and do a bit of shopping - the walk there and back would take me about 25 minutes so he used to do quite alot considering his age.

Wasn't best pleased on the way there but as soon as he arrived, he turned on the charm for the ladies as always - giving out kisses whilst introducing himself.

It turns out one of the ladies who work there is one of my brothers friends mum - my mum knows her from when the boys were little so she knows he is in capable hands. It's nice to know that if anything happens or he plays up i can be there in a flash.

Lets hope he makes the most of it and starts to build up his strength ahain.

sykes Thu 11-Dec-03 15:21:32

That sounds quite positive and great that you know someone there. Hope it continues to go really well and, hopefully, the home may help in diagnosing his stage of dementia/help to get him referred to a consultant. I'd ring him as much as possible, visit whenever you can so he knows someone will be back and maybe keep a big calendar/diary so it states quite clearly when his next visit will be. Maybe put a few personal things in his room, take a bottle round so the staff can let him have a night cap if his medication allows (they won't let him have the bottle as he's likely to forget he's had a drink, and may get rather merry). Also, get the home to get newspapers delivered/take him mags and maybe get a radio for his room (with headphones??) to listen to in bed etc. Lots of luck.

Spod Thu 11-Dec-03 15:26:23

jimjams..... you said there are legal things people can you know what? also, what exactly were the 'threats' made so ss? i ask because we have an 86 yr old, broke her arm 2 weeks ago, has already been diagnosed with demensia, and this has got considerably worse since her last fall. She needs to be in residential care... even if only temporarily (altho should be permenant in our opinion) BUT the hospital and SS are saying that vecause she is refusing care she will be discharged into her own home to live alone again... even though she cannot walk at the moment because she cannnot use her frame to get about cos of the broken arm.... her right arm.... she cannot do anything for herself ... like wash, cook etc... and has no-one to look in on her....we live 100 miles away. What do I have to say to make sure she goes into a home... SS acknowledge that shes not capable of making a rational decicion about her own care, the hospital nurses say same, occupational therappists are astounded that she could even consider living alone again..... so why are they sayoing that shes entitled to make that choice?? She hase no idea what day it is, talks to photographs, has severe delusions... HELP.... what can I say to SS to make them take responsibility (the individual sw involved is trying her best)

Spod Thu 11-Dec-03 15:29:19

SpringChicken... I hope you're grandad settles in okay.... It is awful when old age creeps up on people. I sure he will feel reassured about the place when you keep visiting and cheering him up. And I know how tough it can be for the relatives,,,, take care, but try not to let it take you over... he'll be fine, the bottom line is he needs proper care and the home will help your family provide it. take care.

sykes Thu 11-Dec-03 15:31:59

Can you not have a family member appointed as her guardian - not the word I want, but can't remember it. I was given authority over my mother's estate etc. Also, what about her GP, can't he/her get involved and recommend that she needs care? I went ahead and organised a home. Mum did NOT want to go into one but we eventually got there (described it as a little holiday, we'd visit, not permanent)it was a nightmare but had to be done.

Spod Thu 11-Dec-03 15:40:46

we have power of attourney for her... not registered at the highest level because of some dangerous gold digging relatives that granny napped her and spent 5 months telling her that we'd use it against her.... but now that her dementia has increased we do need to get it registered.... we want guardianship awarded to us but getting the necessary people to conduct a psychological assesment seems impossible!! all they keep saying is that they dont like to declare people incapable of making their own decisions!!!! what ever that means.... even when the decisions she is rying to assert will lead to her hurting herself/falling again etc.... the authorities simply will not do anything... they just want rid of her.... and she would not go in a home if we organised one

sykes Thu 11-Dec-03 15:46:47

I know what you mean about not going into a home as mum was the same, but we had to persuade her as she was a danger to herself and, maybe, others. So sorry to hear about your situation and hope someone can help.

sykes Thu 11-Dec-03 15:47:25

For persuade read make her - felt terrible.

SpringChicken Thu 11-Dec-03 15:49:36

Spod - The only reason my granddad has been given a place in a residential home is because she rang them everyday to make them aware of yet another thing he had - she kept notes of every conversation with every person - the thing we found out about social services is that no-one talks to each other.
If the person you have been dealing with goes on leave, is sick or leaves you are buggered because nobody takes notes and no-one else knows what the hell is going on.

One of the most upsetting things is the thought of all the old people who don't have family to care for them and look out for them that would just be left because they don;t have anyone to fight their case - it's just awful!
I don't know any other ways and means of how to get round social services and i think its ridiculous that they are the main decision makers - all i can suggest is that you don't give up and just keep going at them again and again and again - it worked for us in the end - even if it is only for a few weeks.

Spod Mon 15-Dec-03 21:13:25

our problem is that although our old dear should be in a home she refuses... and social services say that they cannot force her.... that basically its the old dears decision, whether or not it is the right/humane decision... ie... she has the right to go back into her own home and not cope, not look after herself, probably fall again and end up with more broken bones..... what can we do... and there is NO talking to the old dear.... she threatens to kill herself if we mention homes/care.....HELP

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