The dementia whirlwind

Elle3

Registered User
Jun 30, 2016
705
0
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.
Hi emp I think there comes a point when you stop being able to reason with people with Dementia or the very stubborn elderly, I know because I had the same problems with my dad. So instead of asking him and trying to reason with him, I would usually just tell him what was going to happen and normally I always blamed someone else. My dad also hated his GP so he was a good one to blame, as well as the Police. I learnt to be quite devious when it came to dealing with my dad it was the only way I could get him to accept things.

Just a thought regarding the cleaner, could your mum not introduce the cleaner as a friend of hers just helping her out whilst her foot heals. She could bring along the ‘friend’ for a coffee and a chat the first time, no cleaning and see how it goes. The next time the friend comes with your mum and does a bit of cleaning and just keep introducing her gradually to see how it goes.

I hope you work things out, take care. Elle x
 

emp

Registered User
Jun 27, 2018
34
0
Thanks Elle. It's so frustrating isn't it that actually our biggest obstacle is granddad without dementia!
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
It's so frustrating isn't it that actually our biggest obstacle is granddad without dementia!
I think this is actually pretty common, particularly for people of a certain generation who feel they must keep a "stiff upper lip" and wont tolerate "interference". I think there is also the fear of the authorities "putting them away" (memories of the workhouse, perhaps?). It is so frustrating that they will refuse the very help that will keep them in their home for longer.

Sometimes there is very little you can do apart from trying to encourage them to get help and waiting for the inevitable crisis.
Please dont let you and your mum get sucked into the dementia black hole - make it clear what you can and cannot do and stick to it. All the while you are plugging the hole you are just delaying the inevitible and once you start it is difficult to get out. Dont risk, or let your mum risk, health and family
 

emp

Registered User
Jun 27, 2018
34
0
Yes very wise words canary

More distressed phone calls from mum last night. Nan has now started telling the family members that mum's broken foot is not real and that she's plotting to put her in a home so mum can sell the house and have all her money. I'm sure this scenario will sound very familiar to many of you on here.

My uncle let me mum know. For once he was actually very tactful with my mum and very sensitive to how emotionally overwhelmed she has been with all of this. My uncle was intimating that my granddad may also have been saying things along these lines too. It's not clear if this a conversation my uncle has actually had with my granddad or if this is what my nan is telling my uncle along with the rest of her paranoia, but it wouldn't be outside the realms of possibility for granddad to say something like this. All my time growing up was filled with family feuds where my granddad had got an idea about someone (usually the completely wrong idea) and then refused to have anything to do with that person. And this is what upset my mum so much after everything she's done for them.

I ended up having a very long and frank talk with mum about where we go from here. I think mum struggles not to reason with my nan and she keeps giving her very complicated explanations which then upsets mum when she doesn't remember. I think mum knows deep down this is pointless, but struggles to accept we must now be different to how we've always been with nan. I've only got to think how I would feel if it was me having o look after my mum with dementia to understand how incredibly difficult this must be for a daughter who has always been so close to her mum. I ended up having to steel myself for her sake (because she's too emotionally invested to think clearly) and I had to say the words that maybe we need to let it go to crisis now because there's very little else we can do if granddad continues to be unmoving with accepting help. I had to talk her through very calmly and rationally that she needs to step back because it having such a detrimental effect on her and she is becoming a trigger for nan's aggressive outbursts. And I died inside with every word I said. I felt like I was betraying my grandparents, the evil grandaughter suggesting to step away when they need help. But I can't allow this to go on for much longer because we are all exhausted physically and emotionally. Mum said she would think about it. I was composed on the phone and then cried all over my husband when I finished. I felt like such a traitor. I don't want anything to happen to either of my grandparents, but if granddad is continuing to make this choice to not accept help offered maybe we should respect this choice and deal with the inevitable fallout when it happens.

On a lighter note, there was a rather amusing moment the other day when nan locked my mum in the house and then sat in the car wondering why mum wasn't driving her anywhere :D
 

KathrynAnne

Registered User
Jun 6, 2018
269
0
South Yorkshire
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.
It’s surprising how many of these invisibles are about. I have a brother who last saw my Mum in May and then it was a visit to my house to see her for an hour whilst I served everyone with yes and biscuits! My OH is disgusted with him but what can you do when people don’t offer any help? xx
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
It’s surprising how many of these invisibles are about. I have a brother who last saw my Mum in May and then it was a visit to my house to see her for an hour whilst I served everyone with yes and biscuits! My OH is disgusted with him but what can you do when people don’t offer any help? xx

They don't do anything because they don't want to, simple as that in my case. It would interfere with their lifestyle, Yes I know he works and deserves his holidays he told me so but I used to work and have holidays too. No longer because I care for a man with advanced dementia and also cancer now. He is a very nice PWD the kind that many carers would give there back teeth for. A nice kind, thoughtful gentleman who just happens to have dementia and cancer and is totally unaware of these things.

Fact is I used to have a life as well but now I look after my dad every single day unless my husband (who has not been well in recent months) gives me a day off. In fact my sibling who lives about five minutes walk from my dad has a very nice life, he also has a dad with dementia who he need not worry about because he is well cared for and safe from harm. He needn't worry about the cost of a care home even because his dad has the best care money can buy for free. Isn't he the lucky one.

Sorry @KathrynAnne but you sent me off on one there. I try to control my feelings over this because I know that it won't change things but every now and then I find a little rant overcomes me. My husband is also very disgusted with my brother.

This is all irrelevant because dad is now terminal. I actually thought dad was unaware of the situation but it seems he is not. He actually told me that he would have starved if it wasn't for me and he feels like he is living in a hotel. Seems I have got something right.

I actually find it hard to be in the same room as my brother which is a shame but that is how I feel.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes very wise words canary

More distressed phone calls from mum last night. Nan has now started telling the family members that mum's broken foot is not real and that she's plotting to put her in a home so mum can sell the house and have all her money. I'm sure this scenario will sound very familiar to many of you on here.

My uncle let me mum know. For once he was actually very tactful with my mum and very sensitive to how emotionally overwhelmed she has been with all of this. My uncle was intimating that my granddad may also have been saying things along these lines too. It's not clear if this a conversation my uncle has actually had with my granddad or if this is what my nan is telling my uncle along with the rest of her paranoia, but it wouldn't be outside the realms of possibility for granddad to say something like this. All my time growing up was filled with family feuds where my granddad had got an idea about someone (usually the completely wrong idea) and then refused to have anything to do with that person. And this is what upset my mum so much after everything she's done for them.

I ended up having a very long and frank talk with mum about where we go from here. I think mum struggles not to reason with my nan and she keeps giving her very complicated explanations which then upsets mum when she doesn't remember. I think mum knows deep down this is pointless, but struggles to accept we must now be different to how we've always been with nan. I've only got to think how I would feel if it was me having o look after my mum with dementia to understand how incredibly difficult this must be for a daughter who has always been so close to her mum. I ended up having to steel myself for her sake (because she's too emotionally invested to think clearly) and I had to say the words that maybe we need to let it go to crisis now because there's very little else we can do if granddad continues to be unmoving with accepting help. I had to talk her through very calmly and rationally that she needs to step back because it having such a detrimental effect on her and she is becoming a trigger for nan's aggressive outbursts. And I died inside with every word I said. I felt like I was betraying my grandparents, the evil grandaughter suggesting to step away when they need help. But I can't allow this to go on for much longer because we are all exhausted physically and emotionally. Mum said she would think about it. I was composed on the phone and then cried all over my husband when I finished. I felt like such a traitor. I don't want anything to happen to either of my grandparents, but if granddad is continuing to make this choice to not accept help offered maybe we should respect this choice and deal with the inevitable fallout when it happens.

On a lighter note, there was a rather amusing moment the other day when nan locked my mum in the house and then sat in the car wondering why mum wasn't driving her anywhere :D
((((((hugs))))))) @emp

That was a very hard conversation to have and you are very courageous to have said it, but I think it was the right thing to do. Yes, respecting your grandads choice is exactly what it is about. It would be worse if your mum had carers breakdown.
xx
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
you've done really well @emp as canary says
you and your mother are both caring and compassionate daughters, each looking out for your own mother's wellbeing - neither of you in any way are or will be betraying anyone by taking a realistic approach to what can and cannot be done about your grandparents' situation
your mother has done all she can at the risk of her own welfare, and she needed to hear from you just how concerned you are
she also needed to hear that you are there for her and your grandparents, willing and ready to support her in making sensible arrangements and in picking up the pieces shpuld it come to that - respecting your grandfather and his wishes doesn't mean that either of you are giving up on him - you are both keeping watch over the 2 of them and always will
 

myss

Registered User
Jan 14, 2018
449
0
Sorry for the ramble, but I know everyone on here will understand
Welcome @emp to the forum. I had to highlight this sentence at the end of your second post - you are so correct. Reading through your first two posts, I felt nothing but sympathy and empathy for you. Even the title of this thread is so apt - dementia is like a whirlwind.

I know you say your granddad is stubborn to outside help, has anyone explained that this is a lot for you and your mum to take on while doing all the other things in your lives?
I agree with maryjoan's suggestion about 'blaming' someone else - my dad can have his stubborn moments and where he won't listen to what we're telling him to do for his own good. I see that you've used the cleaner excuse, there are other excuses you could use. Things that have come up that you have to do instead of going down there - because it sounds like your grandparents dote on you and Mum to be able to get on with getting on: "Mum has to go to a health check-up or plumber/builder/roofer/etc coming round to do some long term work at home, so someone we know we come round instead".
And unfortunately I once have to had use the excuse of Social services checking on his welfare (even though we're self-funding, they can do this) and the 'we all want you to stay in this house, so this is what needs to happen...' which at the time wasn't too far from the truth but was really a worst case scenario that we were refraining from.
I'm also liking the option mentioned above of bringing a carer with you to your grandparents and introducing them as a friend.

I also just read your post about that talk you had with your mum. Well done to you. I'm crying as I type this... you were SO right to do so, please don't feel bad about it.
My mum was my dad's carer and I so so wished my siblings and I were that aware of the effect it was having on her. She has children in a short driving distance that could help out but she would always say she can handle it.
It was only when she had a fall and broke an arm was when she finally accepted my help to take her to do the weekly food shop and while I was there, I started to help out with my dad - just one half day a week - and to be her ear for moans. Then out the blue, she suffered an aneurysm and now requires 24hr care (and it can't be done at home either).

I think I'll leave it there but as others have said, hang on in there, there has to be a solution to suit you all and I think it starts from that straight talking you did. All the best to you xx
 
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emp

Registered User
Jun 27, 2018
34
0
Hi all, sorry long post incoming, but I need to get it off my chest

Since the last time I posted on here things have gone from bad to worse. My grandparents have never been fans of my dad and with dementia sapping away at my nan's inhibitions she's gotten more vocal about what she thinks of him. As you can probably imagine this resulted in a huge bust up when my dad finally snapped after my nan was critical of his driving and said my mum should have married a doctor instead of him. My dad was doing a hell of a lot for my grandparents, driving them around from place to place, and fetching and carrying, even though they don't get on just to save my mum from the burden of having to do it all as well as spending every other weekend with them. So after the argument with my nan he is now refusing to do anything else for them. Can't say I blame him - he's had this for most of his married life and it's finally become too much. However mum cannot see things from dad's perspective so she has been highly critical of him not being compassionate to her ailing (but ungrateful) parents and she now has to do all the driving around. She rings me at least weekly, sometimes multiple times a day when she has been to visit, in tears because of how unfair the situation is. I've tried to talk to her that she cannot expect dad to put up with being attacked like this and she needs to step back a bit from the caring role for her own well being. Her defense is always that it's "Only two days a week" but it's not - it's been two days a week for at least 12 years, with an extra day every other weekend, plus all the hospital appointments, plus the constant phonecalls now from nan because she forgets that she's phoned.

I've tried to do what I can, even spending 5 hours in A+E last weekend because I found grandad had a hugely infected pressure injury that he hasn't told anyone about so had all the fun of trying to find someone medical on a Saturday afternoon who could look at it. It's become apparent that my nan isn't really safe to be cooking any more and we found out that they have been surviving on soup. I've taken them out for meals, got them ready meals from the shops, offered to cook some portions for them to take down, but my grandad is a pain with food and if there's the slightest imperfection he throws it in the bin. We've tried meals on wheels as a solution and the farm foods, but he keeps cancelling them and throwing them in the bin. Part of me feels he is doing this on purpose to guilt trip my mum into going down (remember, grandad doesn't have dementia and has full capacity). He cancelled the gardener too. I really don't know what else we can do.

I spoke to mum again last night, in pieces again. I think she's mourning that Christmas will now be difficult because of the situation (grandparents usually go to my mum's). She kept saying about her parents starving on Christmas day. I told her that they have three other children besides her so why is it her solo responsibility to cook for them all the time. She started on about my dad being selfish again and that he should just get over it. I started to lose my patience a bit with her because we've been over this so many times. I told her she was being unreasonable and hurtful. And she put the phone down on me.

I'm 29 and my mum has never once hung up on me, nor have we have we ever had a period of not speaking. And now 8 days before Christmas we are not speaking. I'm emotionally exhausted with it all. I've tried to be a strong support for my mum, but it's killing me watching her crucify herself over and over for her parents. I love my grandparents to bits, but they are not nice people and my mum is a saint and now they are really taking the mic. The solutions we have tried to put in place they have shattered. And it's tearing us all apart and creating such a field of resentment. I'm not sure how much longer I can keep doing this. Last night I cried myself to sleep after staying up until a stupid time researching which pubs might still have a table free on Christmas day because the only solution I can see now is that I will have to stay behind while my husband goes to stay with his brother for the Christmas period and take my grandparents out for Christmas day. And now I'm at work trying to hide the fact that I'm breaking from my colleagues while inside I'm broken
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
I will be blunt and you may not agree with me but why are you taking on all this?

Your dad has walked away from it. His choice and respect him from it.
Your mum is relying on you as a sounding board and someone to moan at. Tell her to stop and leave you alone for a bit and certainly not bang on about your dad.
There are other siblings/relations who can take on some responsibility.

Your grandparents clearly need some assistance from social services. Your mother, if she is a carer, needs a carer's assessment.

It's time to take a step back and get social services involved.
 

emp

Registered User
Jun 27, 2018
34
0
I will be blunt and you may not agree with me but why are you taking on all this?

Your dad has walked away from it. His choice and respect him from it.
Your mum is relying on you as a sounding board and someone to moan at. Tell her to stop and leave you alone for a bit and certainly not bang on about your dad.
There are other siblings/relations who can take on some responsibility.

Your grandparents clearly need some assistance from social services. Your mother, if she is a carer, needs a carer's assessment.

It's time to take a step back and get social services involved.

Thanks Fullticket. It's a valid question and you do speak a lot of sense. I do it to give my mum a break. If I didn't, literally everything would fall on her. It doesn't make it fair or right. And I don't want her to feel that she can't talk to me about what's on her mind, but this is a bit of a step too far
 

myss

Registered User
Jan 14, 2018
449
0
@emp You need to be blunt with your mum. Call or, even better, go round to her when she is not at your grandparents. Tell her that you only angry and involved because you are concerned for her welfare and that she can't be doing this all on her own. You can tell her that you'll be her sounding off board but she needs to appreciate that others like you and your dad have their own opinions and feelings and - like Fullticket said - there is now a need to get others involved whether this is social services or your aunts/uncles - and that you'll be happy to help when she realises this.

Your grandparents may not like involving others, especially the social services but hot only their health is at risk here so unfortunately it's tough luck. .
 

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