Hi guys. I don't know how much I may use this forum, this may just end up being a case of clearing my chest. Writing down all the things that are happening right now, my worries, my fears, and everything else that is happening around me right now.
I already know I'm probably gonna come across as a selfish, careless, horrible person. But I don't know how to deal with any of this, it's all the first time I'm really going through anything like this. It's not about me, I get that. I'm not the sufferer of dementia, I know that things can't be helped and what is, isn't going to get any better.
I live with my grandparents, I'm 25, have worked since I left college at 18, but only recently in the past 2 years managed to secure stable, full time employment. My grandparents have always been great. They took me in when my parents split up and both moved away as I was at an important stage at school, and couldn't move away. My grandparents have 2 kids, my dad, who lives in a different part of the country, and his sister who lives in the same town.
My nan couldn't do enough to help anyone, shes the most caring and loving person you could ever meet. My grandad was always great growing up. Strict, but fair. But a great man.
4 years ago he was diagnosed with vascular dementia. He's currently 84. For 6 months before that, he would repeat himself and tell you a story he's just finished telling you, and do silly things like put the house key in the fridge, silly little things. So we had a dementia nurse come and assess him, and we found out he had vascular dementia.
For probably a year to two years, he didn't really get much worse, he still would be repeating things, but he had a daily routine he knew. He would go collect the papers every morning, one for our house and one for the neighbours. He'd still go out with his drinking buddies and long time friends on a Thursday evening, walking the 500m or so to the club just up the road, and back by himself in the evening.
As he got slightly worse, the repeating himself got worse, his friends kind of thought it would be best if maybe he didn't come anymore, and we weren't happy about him walking back in the dark, and he wasn't bothered as he felt I suppose, slightly outcast from the group. So he stopped going.
I guess my point is he was always an active man, he worked up until he was 72, retired, got bored and went back part time until 77. I suppose that's one of the worst things is knowing what he was like, and what he's like now. It's crazy.
Anyway, I suppose 18 months ago he started to get a lot worse. My nan and grandad always enjoyed breaks away, only in the UK but they'd go on cheap coach holidays maybe twice a year, and down to stay with family a couple of times a year also. Whenever he was away he would spend the whole time saying he wants to go home and things like that. He'd forget where he was and what he was doing, but would know it wasn't right.
One night on a coach holiday down in Folkestone he let himself out of the room and wandered downstairs to reception to ask where the toilet was. Couldn't remember his name, or his wife's name, and it was only when my nan woke up and noticed the door was open that she worked out where he was.
About 6 months after that things got worse again, he didn't know who people were in photos we have around the house, he knew he knew them, but didn't know who they were, or names. When people visit he would know he knows them but again wouldn't know who they were even when you asked him unless he really thought about it, he would say he knows the face but doesn't know who they are until it would come to him.
About 8 months ago he stopped sleeping properly. He would go a night or so well, sleeping through, and another night he would get up every ten minutes to go to the toilet, for a few hours until he would eventually go to sleep. He used to tell stories of his old navy days, you couldn't get a conversation about things happening now, truth be told he didn't really know what was happening around him, but you could still hold a conversation. At this stage, that went out of the window. He talks in sentences, but nothing makes sense, nothing linked with anything that's happening or he could see, but I guess it made sense to him. He would ask what time the train is picking him up to take him home, how does he get onto the boat when it turns up outside to get back. What time is someone collecting him to take him to the airport.
We of course just reassured him that he is at home and that no one is coming to collect him because he's already at home and we don't need to go anywhere. That'd satisfy him.
Then I suppose around 6 months ago, he collapsed in the shop round the corner. No real damage, didn't hit his head, but an ambulance was called, and we had to move their bedroom from an upstairs room to the downstairs dining room. We kept the layout the same as not to confuse him even more so. But he was wobbly on his legs and we don't want him to fall down the stairs.
Ever since then, the deterioration has been a lot worse. He doesn't sleep at night at all. We've tried all sorts of tablets prescribed by the doctor, but he will spend all night fidgeting. Wandering around the house, crawling around the floor. He will say things like he's getting his tools ready. The shed is on fire. Strange things which make no sense. Then he will kneel on the bed or the floor, not knowing what he's doing.
My nan has to help dress him, he doesn't know when to lift each foot when putting on his trousers, he can't work out how zips work anymore, he will be doing things like say holding onto the curtain near the chair in the lounge. When you ask him not to hold it he will say he isn't, like he doesn't know he is doing it.
His face is just gaunt, he isn't the man he once was, and it gets me down knowing that.
I'm the only member of the family to live with them. His daughter, my aunt, has a dog who she won't leave at home during the day. So every day they bring the dog round to my nan and grandad, along with mountains of ironing every couple of days which my nan does, without question, because she just can't help enough. Despite having to care for my grandad all day. If he can't see my nan he will go wandering around looking for her. He's escaped out of the house a few times to be brought back by people down our road. It's a close knit community here and everyone looks out for him.
When my aunt, and her partner and daughters come round, they think it's hilarious to ask him who am I dad/grandad. And he doesn't know. They think it's funny because his stock answer is Fred, but it winds me up and makes me sad because they don't see what he's like every day, oh silly old grandad forgetting names. But it's horrible. It's demeaning to him in my eyes. I try and avoid seeing them when they come round because they always ask and it always winds me up.
I do everything I can to help despite working full time, evenings and weekends too on most weeks. I take them shopping, I do anything around the house that needs doing, I repair things.
Yet my nans daughter says I do nothing, I don't pay enough rent to be here, and I should do more to help. While every day adding to the pressure my nan is under by bringing the dog round for her to look after, mountains of ironing. My nan is too nice to say no, she says she likes having the dog, doesn't mind doing the ironing because her daughter works full time. But I know it's a strain, because I know what it's like having to look after my grandad, but she will never say anything. I'm not to say anything because my nan would hate to upset her.
None of us get any sleep as my grandad wanders the house all night, my nan is in tears most mornings due to lack of sleep and not knowing where to turn, yet I get made out to be the bad guy because apparently I should help more with my grandad, but I can't make him sleep. My nan fully agrees and defends me on this.
We have looked at the cost of care, and it really isn't an option. I honestly don't think he will be around much longer as I don't know how his body can cope even now. I know he wouldn't last long in a care home as my other grandad, on my mums side, went so far downhill and passed away not long after going into care. It sounds absolutely awful, but I sometimes think that if he did pass away at least he's at peace.
He can't communicate properly anymore. Yes, he can talk and speak without problem but what he does say makes no sense to him, or to anyone else. He gets angry any time we try to help him with things. He can't go to the toilet by himself without making a terrible mess, and he can't even sleep. I hate myself for thinking it, but I know that before he was ill if he was asked what would you rather, I know what he would have said.
No other family member gets it, because they don't see what he's like every day. They have no idea. It's hard. Bloody hard. Not just for me and my nan but I can't imagine, that if somewhere in his mind, anything makes any sense anymore, what it must be like for him.
He doesn't know when he's at home, he doesn't know night or day, he just really does not know what he is doing anymore.
My nan tries to carry on the best she can, she is honestly brilliant, but she can't continue to cope with no sleep. She just tries and tries to get on, but she knows things aren't ok. Shes terrified that even if we could afford a home, he would hate her for putting him in one. But in all honesty I don't think he'd know much about it. He doesn't know who people are anymore and he just is not the man anyone knew him as.
I don't know if I want answers or really have any questions, just feel I needed to write this down. I'm saving to move out, but I couldn't leave it all to my nan to do. I'm already made out to be the bad guy. My cousins might take my grandad out once a month. They're hailed as heroes, but they don't live with him and do things every day, it's not the beautiful, fun days in the sun once every blue moon. But it's making sure there's food to eat, he's got a drink when he wants it, he's guided to the toilet, he's shown where rooms of the house are, its tidying up when he thinks the fridge is the bin and has chucked his rubbish in there. It's repairing the fence in the garden. It's fixing the car. It's changing the curtain rail.
I don't know how much longer he will be around. I don't know enough about the disease to be able to say. But I feel at this rate of deterioration it can't be too long. Although that makes me sad, I also think what if that's for the best. For him. See, I told you I'd sound horrible and selfish. I dunno, maybe you guys in similar situations will understand.
Care home costs are astronomical for dementia sufferers. My grandparents own this property, which is probably £200k max, and have a few thousand in the bank. From what I understand the house would have to be sold, but where would my nan go in the mean time, and the cost of care isn't going to mean that money will go very far either. From what I understand, there would be no assistance at all due to the fact they own a property of that value. I really don't know the exact ins and outs of this line of help, I know really a care home my nan would like to avoid even if it could be afforded, but I don't know. No idea apart from a little bit read online. My nan doesn't really want to find out because she doesn't want it to have to happen.
I realise this post is huge, but there's a lot been on my mind. Apologies.
TL;DR- probably not worth your time.
I already know I'm probably gonna come across as a selfish, careless, horrible person. But I don't know how to deal with any of this, it's all the first time I'm really going through anything like this. It's not about me, I get that. I'm not the sufferer of dementia, I know that things can't be helped and what is, isn't going to get any better.
I live with my grandparents, I'm 25, have worked since I left college at 18, but only recently in the past 2 years managed to secure stable, full time employment. My grandparents have always been great. They took me in when my parents split up and both moved away as I was at an important stage at school, and couldn't move away. My grandparents have 2 kids, my dad, who lives in a different part of the country, and his sister who lives in the same town.
My nan couldn't do enough to help anyone, shes the most caring and loving person you could ever meet. My grandad was always great growing up. Strict, but fair. But a great man.
4 years ago he was diagnosed with vascular dementia. He's currently 84. For 6 months before that, he would repeat himself and tell you a story he's just finished telling you, and do silly things like put the house key in the fridge, silly little things. So we had a dementia nurse come and assess him, and we found out he had vascular dementia.
For probably a year to two years, he didn't really get much worse, he still would be repeating things, but he had a daily routine he knew. He would go collect the papers every morning, one for our house and one for the neighbours. He'd still go out with his drinking buddies and long time friends on a Thursday evening, walking the 500m or so to the club just up the road, and back by himself in the evening.
As he got slightly worse, the repeating himself got worse, his friends kind of thought it would be best if maybe he didn't come anymore, and we weren't happy about him walking back in the dark, and he wasn't bothered as he felt I suppose, slightly outcast from the group. So he stopped going.
I guess my point is he was always an active man, he worked up until he was 72, retired, got bored and went back part time until 77. I suppose that's one of the worst things is knowing what he was like, and what he's like now. It's crazy.
Anyway, I suppose 18 months ago he started to get a lot worse. My nan and grandad always enjoyed breaks away, only in the UK but they'd go on cheap coach holidays maybe twice a year, and down to stay with family a couple of times a year also. Whenever he was away he would spend the whole time saying he wants to go home and things like that. He'd forget where he was and what he was doing, but would know it wasn't right.
One night on a coach holiday down in Folkestone he let himself out of the room and wandered downstairs to reception to ask where the toilet was. Couldn't remember his name, or his wife's name, and it was only when my nan woke up and noticed the door was open that she worked out where he was.
About 6 months after that things got worse again, he didn't know who people were in photos we have around the house, he knew he knew them, but didn't know who they were, or names. When people visit he would know he knows them but again wouldn't know who they were even when you asked him unless he really thought about it, he would say he knows the face but doesn't know who they are until it would come to him.
About 8 months ago he stopped sleeping properly. He would go a night or so well, sleeping through, and another night he would get up every ten minutes to go to the toilet, for a few hours until he would eventually go to sleep. He used to tell stories of his old navy days, you couldn't get a conversation about things happening now, truth be told he didn't really know what was happening around him, but you could still hold a conversation. At this stage, that went out of the window. He talks in sentences, but nothing makes sense, nothing linked with anything that's happening or he could see, but I guess it made sense to him. He would ask what time the train is picking him up to take him home, how does he get onto the boat when it turns up outside to get back. What time is someone collecting him to take him to the airport.
We of course just reassured him that he is at home and that no one is coming to collect him because he's already at home and we don't need to go anywhere. That'd satisfy him.
Then I suppose around 6 months ago, he collapsed in the shop round the corner. No real damage, didn't hit his head, but an ambulance was called, and we had to move their bedroom from an upstairs room to the downstairs dining room. We kept the layout the same as not to confuse him even more so. But he was wobbly on his legs and we don't want him to fall down the stairs.
Ever since then, the deterioration has been a lot worse. He doesn't sleep at night at all. We've tried all sorts of tablets prescribed by the doctor, but he will spend all night fidgeting. Wandering around the house, crawling around the floor. He will say things like he's getting his tools ready. The shed is on fire. Strange things which make no sense. Then he will kneel on the bed or the floor, not knowing what he's doing.
My nan has to help dress him, he doesn't know when to lift each foot when putting on his trousers, he can't work out how zips work anymore, he will be doing things like say holding onto the curtain near the chair in the lounge. When you ask him not to hold it he will say he isn't, like he doesn't know he is doing it.
His face is just gaunt, he isn't the man he once was, and it gets me down knowing that.
I'm the only member of the family to live with them. His daughter, my aunt, has a dog who she won't leave at home during the day. So every day they bring the dog round to my nan and grandad, along with mountains of ironing every couple of days which my nan does, without question, because she just can't help enough. Despite having to care for my grandad all day. If he can't see my nan he will go wandering around looking for her. He's escaped out of the house a few times to be brought back by people down our road. It's a close knit community here and everyone looks out for him.
When my aunt, and her partner and daughters come round, they think it's hilarious to ask him who am I dad/grandad. And he doesn't know. They think it's funny because his stock answer is Fred, but it winds me up and makes me sad because they don't see what he's like every day, oh silly old grandad forgetting names. But it's horrible. It's demeaning to him in my eyes. I try and avoid seeing them when they come round because they always ask and it always winds me up.
I do everything I can to help despite working full time, evenings and weekends too on most weeks. I take them shopping, I do anything around the house that needs doing, I repair things.
Yet my nans daughter says I do nothing, I don't pay enough rent to be here, and I should do more to help. While every day adding to the pressure my nan is under by bringing the dog round for her to look after, mountains of ironing. My nan is too nice to say no, she says she likes having the dog, doesn't mind doing the ironing because her daughter works full time. But I know it's a strain, because I know what it's like having to look after my grandad, but she will never say anything. I'm not to say anything because my nan would hate to upset her.
None of us get any sleep as my grandad wanders the house all night, my nan is in tears most mornings due to lack of sleep and not knowing where to turn, yet I get made out to be the bad guy because apparently I should help more with my grandad, but I can't make him sleep. My nan fully agrees and defends me on this.
We have looked at the cost of care, and it really isn't an option. I honestly don't think he will be around much longer as I don't know how his body can cope even now. I know he wouldn't last long in a care home as my other grandad, on my mums side, went so far downhill and passed away not long after going into care. It sounds absolutely awful, but I sometimes think that if he did pass away at least he's at peace.
He can't communicate properly anymore. Yes, he can talk and speak without problem but what he does say makes no sense to him, or to anyone else. He gets angry any time we try to help him with things. He can't go to the toilet by himself without making a terrible mess, and he can't even sleep. I hate myself for thinking it, but I know that before he was ill if he was asked what would you rather, I know what he would have said.
No other family member gets it, because they don't see what he's like every day. They have no idea. It's hard. Bloody hard. Not just for me and my nan but I can't imagine, that if somewhere in his mind, anything makes any sense anymore, what it must be like for him.
He doesn't know when he's at home, he doesn't know night or day, he just really does not know what he is doing anymore.
My nan tries to carry on the best she can, she is honestly brilliant, but she can't continue to cope with no sleep. She just tries and tries to get on, but she knows things aren't ok. Shes terrified that even if we could afford a home, he would hate her for putting him in one. But in all honesty I don't think he'd know much about it. He doesn't know who people are anymore and he just is not the man anyone knew him as.
I don't know if I want answers or really have any questions, just feel I needed to write this down. I'm saving to move out, but I couldn't leave it all to my nan to do. I'm already made out to be the bad guy. My cousins might take my grandad out once a month. They're hailed as heroes, but they don't live with him and do things every day, it's not the beautiful, fun days in the sun once every blue moon. But it's making sure there's food to eat, he's got a drink when he wants it, he's guided to the toilet, he's shown where rooms of the house are, its tidying up when he thinks the fridge is the bin and has chucked his rubbish in there. It's repairing the fence in the garden. It's fixing the car. It's changing the curtain rail.
I don't know how much longer he will be around. I don't know enough about the disease to be able to say. But I feel at this rate of deterioration it can't be too long. Although that makes me sad, I also think what if that's for the best. For him. See, I told you I'd sound horrible and selfish. I dunno, maybe you guys in similar situations will understand.
Care home costs are astronomical for dementia sufferers. My grandparents own this property, which is probably £200k max, and have a few thousand in the bank. From what I understand the house would have to be sold, but where would my nan go in the mean time, and the cost of care isn't going to mean that money will go very far either. From what I understand, there would be no assistance at all due to the fact they own a property of that value. I really don't know the exact ins and outs of this line of help, I know really a care home my nan would like to avoid even if it could be afforded, but I don't know. No idea apart from a little bit read online. My nan doesn't really want to find out because she doesn't want it to have to happen.
I realise this post is huge, but there's a lot been on my mind. Apologies.
TL;DR- probably not worth your time.
Your aunt & cousins seriously need a reality check. Your nan is probably trying to carry on as normal perhaps to avoid the reality of what's happening. You all need help & support so perhaps a chat with adult social services to see what is available & advice on care homes or respite would give you all the escape route that may be needed. Try to encourage your nan to talk to her daughter, I think she should see the true situation. Perhaps then some support will come from them. You are clearly a very caring person & your nan is probably so thankful to have your help so don't be browbeaten by the uncaring comments. My best wishes to you, I really hope you can get the help you all need.
