Struggling to get family to acknowledge dementia

[SaraHale]

Hello, sorry this may be long.

My grandad has been showing dementia symptoms for about 3 years now. He is at the point now where he is often very confused, makes little sense and isn't very aware of his surroundings. He lives independently with my grandma, who is not in very good health either but mostly physical issues.

My parents are my grandparents sole carers and are finding it incredibly difficult, last year my mum had open heart surgery so she is not in the greatest health and my dad suffers from depression. It has got so much for them they have gone away for 5 days and turned their phones off, leaving myself and my brother to care for them. I would love to help out more often as would my brother but we both work full time and are studying for degrees so are not around as much as we probably should be. My parents are both retired (early 60s)

Today I have turned up and grandad is very badly confused, refusing to get out of bed, not aware of what's going on. My grandma was extremely stressed and upset and I believe she may be showing very early dementia symptoms now. Although it could just be the pressure of it all. She says that grandad hassles her in the night wanting sex but that he isn't aggressive to her. But I can tell she feels slightly uncomfortable around him and as much as she is devoted to him its too much for her to cope with along with the support (sometimes sporadic) she gets from my parents.

I believe that my grandad needs to go into care or at least have a carer come into the home and help them out. To take some of the pressure off both my mum and grandma. My parents are not willing to acknowledge this as they are obviously finding it very hard to accept.

I need to sit down and talk to them when they are back and offer them options as to what they can do next. But I need lots of help and advice in these areas as I don't know where to begin.

I have spoken to my grandma and in an ideal world I think she would like to stay in their current home. I was wondering if getting a carer a couple of times a week would be enough or is it better to get them every morning? How much does this sort of thing cost.

I also wondered about getting grandma a lock for her bedroom door to prevent her having to worry about him at night time as she says this is when he pesters her.

Basically any advice hugely appreciated as I'm completely out of my depth.

 

[Shedrech]

hello @SaraHale
a warm welcome to DTP
you've certainly found the right place to find support and information

personally, as your parents are finding the situation so tough, I'd contact your grandparents' Local Authority Adult Services fill them in on exactly what the situation is and ypur concerns for them both, especially at night, and ask for them to arrange an assessment of your granddad's care needs - hopefully your grandparents will co-operate, though sadly often the folk concerned say that everything is fine which makes it difficult to put support in place - if you phone them, get an email address and follow up with an email detailing what was said in the call

there's a lot of info on the main AS site - access through the blue button at extreme top right of this page - a section makes clear about paying for care and there's a directory of local services

 

[karaokePete]

Hello sarahale, and welcome from me too. I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. The Publications list and local services details have already been mentioned to you and if you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[J53]

Hello sarahale
I feel for you it's hard for some family members to admit there is a problem but get in touch with your local council who will point you I the right direction for your grandparents to be assessed but don't give it hopefully your parents will be rested and able to look at the bigger picture. Unfortunately some people never come to terms with dementia but with your support they will get the right care big hugs x

 

[Quenelise]

Hi sarahale,
May I suggest asking your parents to take your grandfather to see a doctor. Give information to the doctor eg via the receptionist beforehand about your concerns.
Sometimes confusion in older people can be caused by physical issues, for example a urinary tract infection.
By seeing a doctor, this can be ruled out, and hopefully, his confusion will be addressed from a cognitive perspective.
Hope this helps

 

[SaraHale]

Thank-you for all the replies, I appreciate them all and will be reading all the resources provided when I can.

My grandad has a brain scan booked for next week so we are hopefully not too far off a diagnosis now. However it is more my parents attitude to the whole situation that is hard to deal with. They just want to leave them to rot. My parents have returned from their break yesterday. And have made no contact with any of us, including my grandparents. I have rung my parents today and told them some of the things my grandma told me whilst I was caring for them. I asked if I can come over and chat with them about the options, they do not want to do this. In their eyes they are doing everything they can, which basically involves ignoring my grandparents as much as they can. I don't understand how they can just leave them to live this way. Grandma repeatedly says she wants to die, she feels terrified and alone and she's the main carer of my grandad which must be exhausting given she's 85 and in poor health! Grandad is becoming dangerous to himself and grandma and he could easily wander off, she has to watch him all the time.

Should they not be checking in on them more? They live 5 mins walk away. I'm not sure of the needs of someone with dementia but I imagine it builds up to them needing 24/7 care?

I cannot get my head round why they are not either willing to pay for care or are providing it themselves. A visit every day and then a phonecall in the evening to at least make sure they are okay. They tell me they don't want to be burdened with talking to them every day. It's a duty of care not a burden surely? My parents lock the door so if my grandparents come round they think they are out.

Sorry for this post. I have just got off the phone to my parents and been shouted at for offering to come round and talk through options with them so feeling extremely frustrated.

I'm just extremely worried with their attitude, my mum always says things like she would like to move away and she can understand why people would hit people with dementia. This is because my auntie had dementia and used to claim she was hit by her son but she never was. What a cruel thing to say. I just cannot get my head around it all

 

[Beate]

I think before you judge your parents too harshly I'd respectfully like to point out a few things.

They do not have a duty of care. That lies with the state, which is why you have been advised to contact Adult Social Services.

In the UK any care is paid for by the person needing it if they have enough money. If they have less than £23,250, the state should at least part-fund, why it is again so crucial to contact Adult Social Services so they can conduct a needs and carers assessment. Your parents have no duty of paying for your grandparents' care.

According to you your parents have serious health problems, plus they do not want to be carers. You can rail against this as much as you want, but I fail to see how trying to pressurise your parents into doing more is helping anybody. If you want to help your grandparents, you need to step up yourself, without involving your parents. Your reasons for not being there more aren't any more (or less) valid than theirs.

Btw, if you have ever looked after a person with dementia 24/7 like a lot of us including myself here have, you will understand completely how frustrating it can be and how the thought of hitting them enters your head now and then. That doesn't mean we'd do it, but sometimes you just want to scream. Dementia is so much more than forgetfulness and confusion.

 

[Bunpoots]

It sounds to me as though your parents have reached carer breakdown and are no longer able to cope with your grandparents increasing needs.

Obviously your grandparents need help urgently with or without a diagnosis of Alzheimer’s or any other dementia for your grandad and if your parents are unable, or unwilling, to provide it then your best option is to contact Social Services as @Shedrech has suggested.

It sounds an awful situation and you are obviously very concerned. I hope you can find a solution soon for your Grandma and Grandad.

 

[SaraHale]

I think before you judge your parents too harshly I'd respectfully like to point out a few things.

They do not have a duty of care. That lies with the state, which is why you have been advised to contact Adult Social Services.

In the UK any care is paid for by the person needing it if they have enough money. If they have less than £23,250, the state should at least part-fund, why it is again so crucial to contact Adult Social Services so they can conduct a needs and carers assessment. Your parents have no duty of paying for your grandparents' care.

According to you your parents have serious health problems, plus they do not want to be carers. You can rail against this as much as you want, but I fail to see how trying to pressurise your parents into doing more is helping anybody. If you want to help your grandparents, you need to step up yourself, without involving your parents. Your reasons for not being there more aren't any more (or less) valid than theirs.

Btw, if you have ever looked after a person with dementia 24/7 like a lot of us including myself here have, you will understand completely how frustrating it can be and how the thought of hitting them enters your head now and then. That doesn't mean we'd do it, but sometimes you just want to scream. Dementia is so much more than forgetfulness and confusion.

Please bare in mind I only said all the things I said because I know very little about the whole subject and I am just frustrated that I am trying to help, I am trying, and I keep getting blocked by my parents. I'm on here to get as much advise as I can not just to complain, although I probably was just offloading earlier so sorry for that.

I will advise my parents to contact social services but I do believe they have already been out following my grandma ringing the police claiming she had been hit. My mum said that they could not do anything and only suggest things and all they suggested was a day centre that my grandma could visit.

I have also given my mum the helpline number for dementia UK and they gave her pages of advice but she said to me that it wasn't what she wanted to hear.

If I go behind my parents backs with any of this there is an extremely high chance that I won't be allowed to even see my grandparents and my parents would probably not speak to me either, it's a tricky one to judge. Trying to even speak to my parents always gets extremely heated and then they just change the subject.

My parents are not giving my grand parents 24/7 care and never have. They see them a few times a week for a couple of hours and have no contact the rest of the time, despite my grandparents ringing and visiting. This is what I am really worried about. I was incorrect in thinking that it was my parents responsibly to care for them and thank-you for all the information you have given regarding these aspects.

 

[Rosettastone57]

Thank-you for all the replies, I appreciate them all and will be reading all the resources provided when I can.

My grandad has a brain scan booked for next week so we are hopefully not too far off a diagnosis now. However it is more my parents attitude to the whole situation that is hard to deal with. They just want to leave them to rot. My parents have returned from their break yesterday. And have made no contact with any of us, including my grandparents. I have rung my parents today and told them some of the things my grandma told me whilst I was caring for them. I asked if I can come over and chat with them about the options, they do not want to do this. In their eyes they are doing everything they can, which basically involves ignoring my grandparents as much as they can. I don't understand how they can just leave them to live this way. Grandma repeatedly says she wants to die, she feels terrified and alone and she's the main carer of my grandad which must be exhausting given she's 85 and in poor health! Grandad is becoming dangerous to himself and grandma and he could easily wander off, she has to watch him all the time.

Should they not be checking in on them more? They live 5 mins walk away. I'm not sure of the needs of someone with dementia but I imagine it builds up to them needing 24/7 care?

I cannot get my head round why they are not either willing to pay for care or are providing it themselves. A visit every day and then a phonecall in the evening to at least make sure they are okay. They tell me they don't want to be burdened with talking to them every day. It's a duty of care not a burden surely? My parents lock the door so if my grandparents come round they think they are out.

Sorry for this post. I have just got off the phone to my parents and been shouted at for offering to come round and talk through options with them so feeling extremely frustrated.

I'm just extremely worried with their attitude, my mum always says things like she would like to move away and she can understand why people would hit people with dementia. This is because my auntie had dementia and used to claim she was hit by her son but she never was. What a cruel thing to say. I just cannot get my head around it all

Sorry but I need to make this very clear your parents don't actually have to do anything. They are under no obligation to provide any care or any payment whatsoever for your grandparents care. You have been given advice quite rightly to contact Social Services.

Every family is different in relation to have to deal with this illness . My husband and I had a partial role of caring for my mother-in-law who had mixed dementia but we made as a family a decision many many years ago way before the dementia diagnosis that nobody in the family would ever care full time for my mother-in-law. I don't judge anyone who has made a decision not to be a carer for someone with dementia . It's a long exhausting role no one should be expected to do it if they don't want to. My mother-in-law had carers in but eventually went into full time care. We only contacted her twice a week

 

[SaraHale]

Sorry but I need to make this very clear your parents don't actually have to do anything. They are under no obligation to provide any care or any payment whatsoever for your grandparents care. You have been given advice quite rightly to contact Social Services.

Every family is different in relation to have to deal with this illness . My husband and I had a partial role of caring for my mother-in-law who had mixed dementia but we made as a family a decision many many years ago way before the dementia diagnosis that nobody in the family would ever care full time for my mother-in-law. I don't judge anyone who has made a decision not to be a carer for someone with dementia . It's a long exhausting role no one should be expected to do it if they don't want to. My mother-in-law had carers in but eventually went into full time care. We only contacted her twice a week

Thank-you, I was not aware until @Beate pointed it out about this. I had assumed that you have a duty of care to look after family members if they are unwell but I am now aware this isn't the case.

I am aware that my parents don't want to do any of the care at all, they are probably not mentally/ physically fit to do so anyway as it must be incredibly demanding but I think my grandparents do need care of some sort because they are obviously struggling. They don't seem to be capable of arranging this themselves and so I had hoped I would be able to help my parents sort this for them. I'm starting to think this might not be likely now.

I think I haven't explained myself very well, but I'm learning a huge amount and have suggestions to give to my parents so every post is really helpful, thank-you

 

[maryjoan]

This is a very worrying subject - I can see exactly where @SaraHale is coming from. It feels 'all wrong' to her.
In many societies it is a privilege to care for our parents in their old age - no matter what their conditions. Sadly, in our society this is no longer so.
I do not want to be a carer - in fact, I hate being a carer.
But,like so many on here, I do it for the person who my partner once was - if only a short time to me ( we have known each other 8 yrs)
@SaraHale has love and concern for the vulnerable grandparents, but also has her own life to lead.
As stated, no one HAS to care - @SaraHale - you need to take courage, and go to Social Services and tell them exactly what is going on with your grandparents. If you report them as being vulnerable adults whose health and safety is at risk - you will have done them a huge, and loving favour. Then let Social Services take control of the situation. They can handle any contact with your parents.
One of the hard things about getting the ball rolling is having to keep repeating your story over and over and over. So, if I were you, I would cut and paste the posts that you have put on here ( but not the replies as that is private) into a file, so you have a record of how you are seeing the situation as it unfolds.
Good Luck, it's not easy for you

 

[canary]

One of the things that you may discover is that if Social Services do an assessment and offer care, which your grandparents refuse, SS will not insist. Many people - especially people of a certain age - will not accept what they see as strangers coming into their home, so will tell them that they can manage and dont need any help. Social Services take the view that your grandparents have the right to refuse, so until your grandparents are judged to be a danger to themselves, or others, SS will not intervene.

It may be that your parents have already been down this road and your grandparents have refused, told SS that they dont need any help, yet still expect your parents to do everything - far more than they are able. It is a very common story and if this has happened in your grandparents case it could go a long way in explaining your parents attitude.