The dementia whirlwind

[emp]

I've been lurking on this forum for a few years, but this is my first time actually signing up and posting anything. Sorry if this turns into a bit of a rambling post, but feel I need to get some things off my chest with people who understand.

Bit of background information. Both myself and my mum have been carers for my grandparents for a long time. As soon as I learned to drive I was helping out with hospital appointments. Granddad has every health condition under the sun, nan is registered blind due to AMD and is vary hard of hearing. Nan is not diagnosed with dementia, but it's unmistakable and has been going on for about four years now. Recently she had to have a mastectomy so two lots of surgery, her collapsing and being unconscious, and an allergic reaction to the new medication have all contributed to her having a massive deterioration in her dementia. She is now paranoid, thinks people are coming to take her away, is forgetting to eat, keeps saying she wants to die. I've been going down as much as I can since her operation to help out, but in the midst of all this my mum has broken her foot so I've had to go down even more when I'm able. Mum is still trying to help out, but is reliant on my dad to take her down. Nan has been telling the neighbours that mum hasn't broken her foot and is not coming down because she wants to put them into care

 

[emp]

Whoops posted before I had finished

Mum asked my invisible aunt for help the other day and was told that this is the role she has chosen for herself so she won't help. Felt like smacking her! It's causing a lot of resentment between my parents who keep fighting. My dad doesn't want to "be around old people" all the time and just wants to enjoy his retirement with his wife, a luxury they have yet to have four years after mum has retired. We are trying to work on getting carers in, but granddad has capacity and is stubborn.

I hate this dementia whirlwind. It comes along and pulls in everyone and everything around it, tearing relationships apart, spinning it all round so you no longer know which way is up. I've worked in dementia for a long time so I know we have probably got a long and rocky road ahead of us. Who knows when this whirlwind will stop and what the lay of the land will be when it does. I love my grandparents dearly and I would never resent them, but I hate what this disease is doing to our family. My heart breaks every time the phone rings because I know it will be my mum in tears again over more changes in my nan.

Sorry for the ramble, but I know everyone on here will understand

 

[kindred]

Whoops posted before I had finished

Mum asked my invisible aunt for help the other day and was told that this is the role she has chosen for herself so she won't help. Felt like smacking her! It's causing a lot of resentment between my parents who keep fighting. My dad doesn't want to "be around old people" all the time and just wants to enjoy his retirement with his wife, a luxury they have yet to have four years after mum has retired. We are trying to work on getting carers in, but granddad has capacity and is stubborn.

I hate this dementia whirlwind. It comes along and pulls in everyone and everything around it, tearing relationships apart, spinning it all round so you no longer know which way is up. I've worked in dementia for a long time so I know we have probably got a long and rocky road ahead of us. Who knows when this whirlwind will stop and what the lay of the land will be when it does. I love my grandparents dearly and I would never resent them, but I hate what this disease is doing to our family. My heart breaks every time the phone rings because I know it will be my mum in tears again over more changes in my nan.

Sorry for the ramble, but I know everyone on here will understand

Yes, we do. All sympathy, keep talking to us please. I wish I could do more than sympathise and say how many of us have been on this horrible and what they laughably call journey. g aka kindred

 

[Amethyst59]

Hello, welcome to Talking Point...and yes, you certainly are (and will be) talking to people who understand. As you have experience with dementia, you will know already that a time is going to come when your grandparents will NEED outside help, because your mum will not be able to cope. She should not be sacrificing her life, her marriage, for the monster of dementia that takes everything we have to give and demands more. So, could you persuade her to seek help now? Could you speak to your grandfather, and maybe get him to see what this is doing to your mum, so that he is a bit more amenable to accepting some outside help?
You can ask Social Services for an assessment of needs, for your grandparents and for your mother, as their carer. If your grandparents will be self funding, you can do a search for services in their area and get things started that way. (There is a search engine on the main website...’home’ at the top of this page). Or, and maybe simplest...is to get your grandmother’s GP involved as that can get the ball rolling.
Admiral Nurses provide support for carers (again they have good online support, but are available in many areas of the country to visit and advise). Age U.K. provide support in many areas, as do the Altzheimer’s Society.

 

[emp]

Hello, welcome to Talking Point...and yes, you certainly are (and will be) talking to people who understand. As you have experience with dementia, you will know already that a time is going to come when your grandparents will NEED outside help, because your mum will not be able to cope. She should not be sacrificing her life, her marriage, for the monster of dementia that takes everything we have to give and demands more. So, could you persuade her to seek help now? Could you speak to your grandfather, and maybe get him to see what this is doing to your mum, so that he is a bit more amenable to accepting some outside help?
You can ask Social Services for an assessment of needs, for your grandparents and for your mother, as their carer. If your grandparents will be self funding, you can do a search for services in their area and get things started that way. (There is a search engine on the main website...’home’ at the top of this page). Or, and maybe simplest...is to get your grandmother’s GP involved as that can get the ball rolling.
Admiral Nurses provide support for carers (again they have good online support, but are available in many areas of the country to visit and advise). Age U.K. provide support in many areas, as do the Altzheimer’s Society.

Thanks Amethyst. Yes we know we are at that point where we need carers because it's not just my nan, but granddad who needs help. I've been going down and helping him to wash and sort out his continence pads and I was down there for several hours again at the weekend playing hunt the house keys (turns out nan had squirreled them away in her coat pocket). The problem is that granddad is incredibly stubborn and feisty. He has capacity and will not entertain the idea of carers (his nickname is Tiger for a reason - when I was younger I used to have to intervene with any door to door salespeople in the street before they got to granddad's house for their own sanity and to avoid a tirade of abuse). I tried to have a discussion with him at the weekend about it - I know his main fear is "being put away" so I was trying to use the angle that everyone wants him to stay in his own home, but in order to do that we need extra support. Even the nurse in the surgery was trying after mum took him for a recent appointment and nan walked off four times in the space of 10 minutes. My uncle is also having a go to see if we can persuade them to accept meals on wheels and work from there

 

[looviloo]

I really feel for you, and I'm sure everyone else does too. We have a situation building in our own family where one partner is more stubborn than the other and refuses help. But outside help is inevitable, as it is with your family.

How to get to that stage? Meals on wheels is a good idea, since it's just a little help from outside that might seem less threatening. Perhaps a cleaner, on a weekly basis? As someone else suggested, I'd probably involve your nan's GP (if possible). Telling your grandad that any help is for her and not for him might persuade him. At least with the GP on your side you can say that the GP arranged it etc.

Keep posting and let us know how it goes?

 

[maryjoan]

Thanks Amethyst. Yes we know we are at that point where we need carers because it's not just my nan, but granddad who needs help. I've been going down and helping him to wash and sort out his continence pads and I was down there for several hours again at the weekend playing hunt the house keys (turns out nan had squirreled them away in her coat pocket). The problem is that granddad is incredibly stubborn and feisty. He has capacity and will not entertain the idea of carers (his nickname is Tiger for a reason - when I was younger I used to have to intervene with any door to door salespeople in the street before they got to granddad's house for their own sanity and to avoid a tirade of abuse). I tried to have a discussion with him at the weekend about it - I know his main fear is "being put away" so I was trying to use the angle that everyone wants him to stay in his own home, but in order to do that we need extra support. Even the nurse in the surgery was trying after mum took him for a recent appointment and nan walked off four times in the space of 10 minutes. My uncle is also having a go to see if we can persuade them to accept meals on wheels and work from there

Have you tried blaming someone else? That's what we did when my OH came out of hospital after major surgery - he has dementia too. We told him the hospital had said that Social Services had to come and see us - and he accepted the visit as being because he had had his operation not because of the dementia.

I expect other people here will have other thoughts as well as to how you can perhaps get around this.

stay strong - it's the hardest thing in the world

 

[emp]

@looviloo a cleaner might be a good shout actually. As nan can't see the housework is very difficult, I've done the washing a few times and mum normally does the hoovering, but obviously this isn't happening with a broken foot. And yes you're right, this would probably be less threatening. And it would be someone else sticking their head round the door just to check if they're ok.

Not sure about the GP, granddad still upset that he told the DVLA he wasn't fit to drive (absolutely correct, but granddad still fuming to this day). I'll put it to mum and see what she thinks

 

[looviloo]

@looviloo a cleaner might be a good shout actually. As nan can't see the housework is very difficult, I've done the washing a few times and mum normally does the hoovering, but obviously this isn't happening with a broken foot. And yes you're right, this would probably be less threatening. And it would be someone else sticking their head round the door just to check if they're ok.

Not sure about the GP, granddad still upset that he told the DVLA he wasn't fit to drive (absolutely correct, but granddad still fuming to this day). I'll put it to mum and see what she thinks

If I'm honest, we found my dad's GP quite unhelpful, but I'm sure it depends on the individual and how stretched the services are at the GP's surgery. You can talk to the GP in confidence (granddad doesn't need to know) and obviously they can't discuss it with you without nan's permission, but at least you can air your concerns. Or write it down and ask the GP to read it? It'll at least provide them with a fuller picture (including the strain on the wider family).

Yes, a cleaner will be our next step with our relatives. I wonder if Age UK could help in recommending a reliable, local service?

 

[canary]

I wonder if Age UK could help in recommending a reliable, local service?

Age UK have what they call Help at Home Service. I use this and have someone come once a week for two hours. She does the "heavy" stuff for me - cleaning the bathroom and kitchen, hoovering/mopping floors, changing beds and hanging out the washing. She is lovely, has been vetted by Age UK and OH likes her. It works very well

 

[marionq]

Since John came home from respite I have a carer (team of two) in four mornings a week to help with showering, shaving, dressing etc. This is the first help in the home since diagnosis six years ago. Not only is it good to sit quietly with my coffee for a change but it is another sane voice to start the day and someone to notice if things go wrong.

It has taken a few hiccups to get the times and routine established but by winter I know this will make a big difference. Worth the effort.

 

[emp]

I put the cleaner idea to mum, but she doesn't think it will work. Nan doesn't see the point in mum cleaning so she probably won't accept it and they're both grumbling at the meals on wheels. I've suggested to mum maybe we don't involve nan and just talk things over with granddad, as hard as that is she doesn't see why it might be helpful, and I've suggested maybe we try what several others on here have tried with the cleaner that it's someone looking for a job so we're helping out a bit. Mum thinks my grandparents won't even let them in with nan being so paranoid and granddad being stubborn so that idea has gone down like a lead balloon. Thanks for the suggestion anyway, it was worth a shot. I'll see if I can keep working at it gently.

Mum's invisible sibling seems to be implying mum should be doing more to help out with making sure they eat. I'm sorry, but she already ensures they go out twice a week, cooks for them on a Sunday and plates them a meal for the next day and I've been trying to get ready meals in for them and taking them out myself when I can so I'm not sure what else this sibling expects. How about them getting down themselves and pitching in?! Arrrghh so frustrating!

I feel so sad with everything that is going on because there is no easy solution to all of this. I feel sad for my mum that she feels under all this pressure and I'm limited to what I can do around work. I'm doing what I can and I've offered to take time off to contribute more, but mum says I shouldn't have to sacrifice my time when there are others who are retired who could help out and are choosing not to. And I feel sad for my nan at the centre of it all feeling that no one comes to see her and that everyone is against her.

 

[octopuss]

Whoops posted before I had finished

Mum asked my invisible aunt for help the other day and was told that this is the role she has chosen for herself so she won't help. Felt like smacking her! It's causing a lot of resentment between my parents who keep fighting. My dad doesn't want to "be around old people" all the time and just wants to enjoy his retirement with his wife, a luxury they have yet to have four years after mum has retired. We are trying to work on getting carers in, but granddad has capacity and is stubborn.

I hate this dementia whirlwind. It comes along and pulls in everyone and everything around it, tearing relationships apart, spinning it all round so you no longer know which way is up. I've worked in dementia for a long time so I know we have probably got a long and rocky road ahead of us. Who knows when this whirlwind will stop and what the lay of the land will be when it does. I love my grandparents dearly and I would never resent them, but I hate what this disease is doing to our family. My heart breaks every time the phone rings because I know it will be my mum in tears again over more changes in my nan.

Sorry for the ramble, but I know everyone on here will understand

 

[Duggies-girl]

I put the cleaner idea to mum, but she doesn't think it will work. Nan doesn't see the point in mum cleaning so she probably won't accept it and they're both grumbling at the meals on wheels. I've suggested to mum maybe we don't involve nan and just talk things over with granddad, as hard as that is she doesn't see why it might be helpful, and I've suggested maybe we try what several others on here have tried with the cleaner that it's someone looking for a job so we're helping out a bit. Mum thinks my grandparents won't even let them in with nan being so paranoid and granddad being stubborn so that idea has gone down like a lead balloon. Thanks for the suggestion anyway, it was worth a shot. I'll see if I can keep working at it gently.

Mum's invisible sibling seems to be implying mum should be doing more to help out with making sure they eat. I'm sorry, but she already ensures they go out twice a week, cooks for them on a Sunday and plates them a meal for the next day and I've been trying to get ready meals in for them and taking them out myself when I can so I'm not sure what else this sibling expects. How about them getting down themselves and pitching in?! Arrrghh so frustrating!

I feel so sad with everything that is going on because there is no easy solution to all of this. I feel sad for my mum that she feels under all this pressure and I'm limited to what I can do around work. I'm doing what I can and I've offered to take time off to contribute more, but mum says I shouldn't have to sacrifice my time when there are others who are retired who could help out and are choosing not to. And I feel sad for my nan at the centre of it all feeling that no one comes to see her and that everyone is against her.

Oh dear, I am sick to death of hearing about invisible siblings, just who do they think they are. I have got to take my 88 year old dad to have his second stent fitted tomorrow because he is unable to eat again due to his oesophageal cancer that has obviously grown. I have been asked by my invisible to keep him informed so this I have done. Yes usual story, he's working and then going on holiday Friday so no help there.

Down to me and my husband again. Actually I am glad because the thought of spending most of the day sitting in a hospital with the invisible is not something I wish to do. I have nothing to say to him to be honest.

 

[octopuss]

So sorry to hear of your trauma.It seems to me that the powers that be should really be focussing on the caring family, more than the poor suffer,because the Alzheimers person often don't realise the problems they cause.It is a ghastly situation for all of us who care, and each day brings a new challenge.I have had to call on my previous training as an infant teacher to help me to deal with my husband who is VERY active although well into the A.D journey.You are so caring, it is such a challenge for everyone and your love for your grandparents shines through your"rant"like a beacon. Hang in there,some days will be better than others, and you can only ever do your best.

 

[looviloo]

Aww that's a shame about the cleaner idea, but I can see how difficult is. All attempts to help are probably met with resistance due to the paranoia etc. Maybe it would help to think about the kinds of people they are likely to respond positively to? Authority figures such as a doctor/nurse, and go from there? Or maybe getting help from outside will just be too problematic and stressful for everybody :-(

Situations like this are sad and incredibly frustrating. I've been there with my dad. I eventually had to accept that there was only so much I could do and that I couldn't make dad accept anything he didn't want. Eventually, in my dad's case, the issue was forced by a hospital visit that ended in long term care. He never really accepted the situation, even though it was obvious he needed a lot of care (more than I could give) and didn't have capacity to make decisions. Hopefully just sharing your experience here will help you, and you might come across something that will work. I hope so. Big hugs!

-

Another thought came to me while re-reading this... I sometimes found that dad gave a different response to someone outside the family than he did to to me. Either because he was on his best behaviour and therefore more compliant, or because we (as a family) were locked into a pattern of behaviour with each other that was difficult to break. So I guess what I'm saying is, you might need to get someone from the outside involved before they'll actually agree to it? Does that make sense? Maybe it's fear of the unknown? We never got this far with my dad but I wish sometimes I'd just been a bit more assertive ;-)

 

[jknight]

Oh dear, I am sick to death of hearing about invisible siblings, just who do they think they are. I have got to take my 88 year old dad to have his second stent fitted tomorrow because he is unable to eat again due to his oesophageal cancer that has obviously grown. I have been asked by my invisible to keep him informed so this I have done. Yes usual story, he's working and then going on holiday Friday so no help there.

Down to me and my husband again. Actually I am glad because the thought of spending most of the day sitting in a hospital with the invisible is not something I wish to do. I have nothing to say to him to be honest.

I feel for you Duggies-girl. I don't have any siblings. My hubby & i saw my dad through oeshophagal cancer. Six months later, mum's Alzeihmers was diagnosed. PM me if you want a chat with someone who really understands x

 

[Duggies-girl]

I feel for you Duggies-girl. I don't have any siblings. My hubby & i saw my dad through oeshophagal cancer. Six months later, mum's Alzeihmers was diagnosed. PM me if you want a chat with someone who really understands x

Thank you for that knight I may do that once we get tomorrow over with. It is very kind of you.

 

[jknight]

Thank you for that knight I may do that once we get tomorrow over with. It is very kind of you.

I've just read your dad is having a stent tomorrow. My dad had a stent as well. It's completely rubbish, isn't it? Thinking of you, Duggies-girl xxx

 

[Duggies-girl]

I've just read your dad is having a stent tomorrow. My dad had a stent as well. It's completely rubbish, isn't it? Thinking of you, Duggies-girl xxx

Stent number 2 actually. Stent no 1 has been in six weeks and now he can't eat again. He has completely forgotten about that. I had to remind him. I know he will be surprised again in the morning. He is such a lovely man even with the alzheimers. Life is cruel I have found.