Carer for Mum, Alzheimer's (early stage) diagnosis.

[Fluff bucket]

Hope you find her soon. Thinking of you and angry at your brother. Why is he texting you 2 hours after your mum went 'missing'? Why wasn't he out looking for her after 10 minutes like anyone else would be?

And why is he finding dumped meals? Does he just leave her to eat alone? Does he not see what she eats? Surely if was keeping even the slightest watch over her this couldn't happen.

@Jaded'n'faded

We did - she came back within 20 minutes of him texting, but, needed to go over and find out what was happening anyway. He didn't want to leave Dad alone (he is frail, terminally ill and has had falls), wanted to be there if she came back, and has a bad back too unfortunately, so it made sense for me or others to search...

I think from what he says, the kitchen is a sore point, so he leaves her to it in there to eat after he's made food for him and Dad (Mum keeps refusing anything he wants to cook for her). So, I keep getting mixed info - sometimes he is following her around questioning why she is moving stuff/putting it away there/or moving stuff himself if he thinks it is illogical for her to put stuff away. Sometimes he leaves her to it after tending Dad...

 

[Fluff bucket]

Hi @Fluff bucket hoping that your mum is safe and well

@Starting on a journey

Thank you. She is fortunately. x

 

[Fluff bucket]

I'm sorry things are so very difficult @Fluff bucket . You have so many issues to deal with, you must be worried sick. I've been catching up with your story in horror and I'm seething on your behalf. I hope you find your mum soon (hoping you already have done) and that she is ok.

I must admit that, if it were me, I would pack mum some clothes and have her to stay for a short while. It's not a long term solution but would give everyone a bit of breathing space and your brother does appear to care for your Dad.
Perhaps if your brother tells your Dad that is what is happening, he may be more open to the idea. It will give you chance to have proper time with your mum and feed her up a bit (it's possible she may think your brother is trying to poison her if she is throwing food away).

Do you think your mum will feel more secure with you and can you manage it?

We're all thinking of you.

@lemonbalm

Thank you and yes, she is ok.

Sadly, I have asked Mum to stay, and she refuses because Dad says he needs her. She wants brother to go back home to give her respite. But, the odd occasions he has needed to commute, she then tries to stop me helping her with Dad, and does need some prompting e.g. cooks a meal for him, but, might forget to get meat out for it the night before to thaw, so, misses it out or improvises with baked beans for the protein element...

Took her out yesterday and today, made sure she had a hot meal out (tried to feed her at my home but refuses as she feels she is depriving me!).

This seems to be the only way she eats properly - wondering if it is a way of showing her independence by refusing to let him help her in any way, even cooking a meal for her? But I did find that she had thrown ready meals out (after telling brother she'd eaten them), so I now know that is true... : (

 

[Fluff bucket]

I don't do tech, but I know several people on here have set up cameras to keep an eye on their parent. Perhaps you could do something like this. Surely your brother can't object to that - if your Mum is genuinely doing all these things of course....

@lollyc

I have thought about this. So that we can all see/observe what she can (or can't do), see if she is really eating or not, mentioned it to Dad, about e.g. a tracking bracelet (or on her phone) but he doesn't feel she is at that stage 'yet'. So if my terminally ill Dad, who spends most of his time in one room, in his chair, still senses she has capacity, then, still not sure why brother is convinced of the opposite i.e. that she should be in a care home now?

The other snaffoo is that she often forgets phone, has numerous coats/bags which she changes daily, may well not agree to a tracker in any shape or form. I try to stress that if she is out and about, if Dad takes a bad turn, she would want to know so she should at least have her phone.... : (

And then again, when brother is in kitchen cooking, I notice this is when he is downing cider like no tomorrow, so he wouldn't exactly warm to the idea of being on candid camera....

I feel a bit like a prize eejit, turning up at different times, trying to be there more to help despite brother's refusal of need. His latest idea being I should stop taking her on weekly shop... despite saying to him that a regular shop on same time, same day, same routine, is actually good for her memory issues...

 

[Fluff bucket]

Checked dosage brother administered to Dad, it was double dose morphine, and really not recommended, checked with GP.... told all 3 of them and I marked on bottle and in Dad's notes. Dad can't do it himself as losing his fine motor skills now, and it has to be syringed in liquid form... so even though he has pain, it is a really bad idea to take the dose he had... Brother said that Dad said it was ok, he was unsure but took his word for it, and the label could be slightly misconstrued not clearly stating a maximum dose, saying 'as required', corrected now... trying not to have blummin' nightmares over it.... so giving it the benefit of doubt. Makes me feel like the health police....

 

[Fluff bucket]

2 texts and 2 voice mail calls from brother. He is angry because I switch off mobile in evening (its an old one and doesn't hold charge if left on so I switch off and charge up at night now). I have a landline which is always available but he didn't ring!!! : ( However he would be standing next to Dad to ring me on that...?

Apparently Mum 'wandered' last night although it was 10pm and store would be closing at 11pm. Not sure why she left altho assume they argued again. Not sure if this is wandering if she tells him where she is going? But certainly don't want her out at that time of night. No voice mail phone call to reassure that she was back safe if he was concerned for her safety. And he didn't go out to look.

Anyway, is it coincidence that other brother away? Strange... then 2 texts complaining that he can't cope and is in the middle of it all rec'd 825am today. Yet the other day he was saying he was bored with not enough to do? Confused.

Going round feeling stressed before I even get there. I can get that its frustrating if Mum is forgetting/repeating. But I think brother is angry we don't think she should be in CH - especially as poor Dad is slowly dying in front of us and doesn't want to be parted from her.

Urgh, suspicious of timing with brother away (which he was angry about anyway only 2 days for a celebration), and I am getting relentless texts from him about her not eating (she tells me brother argues and puts her off her food so throws it away), he offers to cook but she refuses - basically refusing any help from him whatsoever.

It now feels like a relentless campaign about her in/capability from him, Strange that she has confronted him again about drinking too much again... or am I completely paranoid now? Tried to phone admiral nurses but too busy, so ask what I can do to support them all, think it will all end with me getting long list of complaints from them... : ( Pass the anti-depressants now please...

 

[Fluff bucket]

Argh. Conflicting stories. Brother kept out of the way at first. Mum saying they had a row (Dad describes a blazing row about everything) & she did go to local supermarket at a daft time of night because she remembered needed potatoes... then argued about her going at that time, but she stormed off anyway. This was when brother rang and got my voicemail. She obviously got back ok thankfully, but, brother fuming I hadn't come round (the blasted thing was off to charge - but I have a landline). No message to say she was ok though either. Mum said she told him to leave and he said he is going to as she 'want's her life back so now she will have it!' he was still there when I popped back here, but I am going back to make sure they are ok.

Then a bit of garbled text from brother that she fell on Dad this morning.... Mum told me herself with no prompting she'd fallen on her back in bedroom, but Dad wasn't there. Asked Dad and he confirms this... so she is stiff and sore, checked her back, no swelling or bruising visible. Its obvious to me she is a bit frailer than she would ever admit.

As brother not there, cooked up meal for parents, wasn't too bad, but brother started over-seeing and asking how I was preparing, e.g. did I put the starch water back into the potatoes, etc. as he is protective. Unfortunately I did not pass his scrutiny as I had to re-heat what was pureed and he said this does destroy the nutrients (warmed in microwave).

I know he has far better knowledge on food and nutrition than myself, so, feeling rather like I am the inferior carer here. I guess the important thing is he is getting some.

Hoping that space will equal respite for both brother and mum, and, maybe, they might just get on better. Not sure if/when brother will be back, but can't help feeling that the atmosphere will be less tense. Poor old Dad is sad about all of this, witnessing it all, but then also with his illness falling asleep a lot in the day.

Noted that mum looks worried about being on her own with Dad now, so, I do think she realises deep down she needs more support than she lets on. Don't think she will acknowledge this unfortunately. I have asked her not to take late night trips to supermarket alone, not sure she will listen...

 

[Sarasa]

Oh @fluffbucket you are the piggy in the middle of all this. I think you're brother stepping back is probably a good idea as you'll get more of an idea as to how capable your mum really is, when they are not winding each other up and blaming each other. It does sound like both your parents need more care than they are getting. I know they don't want carers coming in and from the sound of your brother's micromanaging he doesn't either. However I think a few phone calls to the relevant services tomorrow might be wise.
My mother did silly things, and agreed they were silly when I asked her not to do them again. That didn't stop her doing them again though, so I do think your mum is likely to decide to go out at inappropriate times again. My mother started to lose her sense of time, and I wonder if that is happening with your mum too/

 

[Fluff bucket]

Oh @fluffbucket you are the piggy in the middle of all this. I think you're brother stepping back is probably a good idea as you'll get more of an idea as to how capable your mum really is, when they are not winding each other up and blaming each other. It does sound like both your parents need more care than they are getting. I know they don't want carers coming in and from the sound of your brother's micromanaging he doesn't either. However I think a few phone calls to the relevant services tomorrow might be wise.
My mother did silly things, and agreed they were silly when I asked her not to do them again. That didn't stop her doing them again though, so I do think your mum is likely to decide to go out at inappropriate times again. My mother started to lose her sense of time, and I wonder if that is happening with your mum too/

@Sarasa

After being at parents, making dinner, etc had to come home, to find dog thrown up poor old thing. She definitely isn't well. Stupidly tried to feed a small amount of food, threw up again. Emergency vet said to monitor her and not feed her as this has happened before (eaten something and needing 24 hour fast).

Then a 2 hour phone call from brother who was going to leave last night; upshot was he described a lot more of Mum's actions, saying she had slapped him, and he put up with a lot for Dad. Unfortunately, she had put a footstool at the end of his recliner as Dad decided to sleep in it last night, he then couldn't move his chair as the footstool jammed under it when he needed to get up to urinate and was yelling and yelling for help. Couldn't get out of the chair and Mum's deafness meant it was ages before she helped... brother said he heard yelling but mistook it for Mum being asleep on sofa and Dad trying to wake her up.

He said he sets his alarm every 2 hours and then goes to the head of stairs to listen in case they need help after Dad's fall... I do not know what to think anymore - all I know is Mum wants him gone as she was telling me he argues with her so badly she sometimes wets herself. But I know my brother has really looked after Dad and helped tremendously with his diet - stabilising his losing weight, i.e. slowed it down.

He was telling me why he started drinking - something horrendous happened to him. Ended up both of us sobbing on the phone... then poor little dog was restless and pacing up and down, drinking lots of water, ending in a bout of bad runs, really tired and emotional and barely slept.... brother said he was at the end of his tether, but, feels guilty leaving Dad when he commutes as Dad won't listen to me or Mum about his eating/exercising. I feel at the end of mine too...
: (

 

[Fluff bucket]

Going to ring everyone I can for help today, but, also need to get poorly dog to vet & then go to parents...

 

[lemonbalm]

Good luck with getting some help in @Fluff bucket . I don’t think parents, realise, when we are looking after them, that we are completely run ragged .

Perhaps if you say that any help is for your benefit, they may be more accepting, or say to your mum that you and she can go out more if you get a bit of help in to do some of the other, boring stuff. Whatever you say, I hope it works.

 

[Sarasa]

@Fluffbucket, I'm glad you and your brother had that long phone call. Whatever the ins and out of who did what it is obvious that he is reaching carer break down trying to look after your dad and desperately needs a break. It's obvious that your mum thinks she can do more than she can, and I think if she was left to look after your dad problems like the one with the recliner would continue to happen. I wish you good luck with poorly dog and with sorting out some help for your parents. Don't forget the Support Line on 0333 150 3456, as they'll be able to point you in the right direction for help.

 

[Jaded'n'faded]

It is too much for him to do alone. He's there primarily to look after your father, which is no doubt a full time job in itself. But he's also 'keeping an eye on' your mum when he can. I appreciate your mum is still able to do many things herself but I think she needs a lot more attention/watching than he is able to do. Plus, she doesn't want his help and they argue. Neither want him to be her carer.

I think moving towards different care for both your parents is the way to go. Brother would be better visiting but not living there. He needs some time/space to look after himself too, as do you.

 

[Fluff bucket]

Good luck with getting some help in @Fluff bucket . I don’t think parents, realise, when we are looking after them, that we are completely run ragged .

Perhaps if you say that any help is for your benefit, they may be more accepting, or say to your mum that you and she can go out more if you get a bit of help in to do some of the other, boring stuff. Whatever you say, I hope it works.

@lemonbalm

Spoke to everyone -

Adult Social Care = no action unless Mum makes formal complaint about abuse. Or accepts outside carers. Or crisis situation. Apparently both parents expressing a wish to die isn't a crisis. Nope.

Social worker = counselling/support for us all. Nope. Only me accepting this.

Nurse from team helping Dad = wants to maintain emotional distance as doesn't want Dad to reject their help, I can understand that as Dad needs them. Coming to home visit/review more often as this is required anyway.

Dementia Support = fuller context of everything that's happened = referral to ASC after hour long call - they feel Mum is at risk/vulnerable from brother = see ASC reply. We talked over each option:

Will brother leave? No

Will mother leave/respite? No

Will any of them accept outside help/carer/support? No. Mum only asked for 2 sessions of counselling for herself as end of her tether with arguing and worn out by it, said she needed to talk to someone. Using this as a chance for home visitor (not going to mention her diagnosis etc) as a kind of counsellor. I said we have to try but she may refuse as I am at my wit's end... possibly visit her next week.

Dad was approached by SW at LOROS (she spoke to me for 1.5 hours on situation after dropping Dad off at day session) and I knew she would do this as she said she would. Nothing mentioned by Dad when I picked him up so it seems he has refused support.

Brother still pushing that Mum wandered on same day even though she told him where she was going. Wanted me to spend all the rest of that day searching for her. Tried calling, no reply. Found her dozing on bed when fetched Dad.

Other options:

Have I discussed situation calmly with everyone? Yes. No change. Tried it as a group, tried it individually. Explained about dementia sufferer's needing calm/support to brother and Dad.

ASC suggested confronting brother to get help with drinking. Did not do this, as witness Mum directly confronting that he drinks too much = brother hostile/angry to Mum. No acceptance that there is a problem. Stating counselling failed for him. I.e. he has tried and nothing else works.

Discuss impact brother is having on Mum with brother. Yes - see above that I try to mediate and explain to each of them. Result = no change. Possible calm for one day...

Dementia Support/ASC say that Mum has capacity so basically the ball is in her court to act. I know she won't do that as she has said she is putting up with brother for Dad's sake.

Finds wall to bang head on....

 

[Fluff bucket]

@Fluffbucket, I'm glad you and your brother had that long phone call. Whatever the ins and out of who did what it is obvious that he is reaching carer break down trying to look after your dad and desperately needs a break. It's obvious that your mum thinks she can do more than she can, and I think if she was left to look after your dad problems like the one with the recliner would continue to happen. I wish you good luck with poorly dog and with sorting out some help for your parents. Don't forget the Support Line on 0333 150 3456, as they'll be able to point you in the right direction for help.

I am thinking drastic action - use cameras to record what is going on, as proof to ASC, but, is this over the top?

 

[Fluff bucket]

It is too much for him to do alone. He's there primarily to look after your father, which is no doubt a full time job in itself. But he's also 'keeping an eye on' your mum when he can. I appreciate your mum is still able to do many things herself but I think she needs a lot more attention/watching than he is able to do. Plus, she doesn't want his help and they argue. Neither want him to be her carer.

I think moving towards different care for both your parents is the way to go. Brother would be better visiting but not living there. He needs some time/space to look after himself too, as do you.

Agree. Just wish they all would....

 

[Sarasa]

Actually I think cameras might be a good idea, though I guess you need your parents and brother to agree. Maybe suggest a video door bell to start off with, as that should show you what is happening at the times your mum wants to leave.
As it is it sounds as though everyone is waiting for a crisis to happen before they step in, but at least all the professionals are aware of the problems.
Maybe you need to try and stop juggling all the plates and let at least one fall, and hope it isn't too big a smash.
{{{@fluffbucket}}}

 

[jennifer1967]

ive been through ASC for myself as safeguarding was raised for me but talking to brick wall. and there well worn word capacity. their cop out every time.

 

[Fluff bucket]

Actually I think cameras might be a good idea, though I guess you need your parents and brother to agree. Maybe suggest a video door bell to start off with, as that should show you what is happening at the times your mum wants to leave.
As it is it sounds as though everyone is waiting for a crisis to happen before they step in, but at least all the professionals are aware of the problems.
Maybe you need to try and stop juggling all the plates and let at least one fall, and hope it isn't too big a smash.
{{{@fluffbucket}}}

@Sarasa

Good point - I have mentioned ring doorbell although parents weren't keen...

Got there to take Mum shopping, she wasn't there! Dad said she'd walked to local supermarket and hadn't I seen her on the way? Nope. Rushed out to see her on the other side of road, tried yelling and waving she didn't hear. Had to turn car around and race back -beeped several times before she noticed. She had walked a short distance to a different shop (not the one Dad thought).

Took her home for list (there had been one on their calendar) - gone although I had seen it Sunday. Had a quick look in freezers and fridge, Mum compiled her own regardless, and a glance showed me she'd just about figured what was needed. Unfortunately, had to rush around supermarket with her as by then late start, and needed to get dog to vet.

Made it in time for appointment. Then had to wait half hour... needn't have rushed quite so much. Sadly poor dog seems to have a bad gastric problem my poor little girl... had to leave her with vet and she may need vet hospital so waiting for a call to drive her there now...

Brother said that he is doing what Mum wants - stepping back and staying in his room so he isn't 'interfering'. Kind of him to let me know when I arrived! I can't say I blame him as the continuing arguments are horrendous. He said she just walked out yesterday not telling anyone, hadn't fed Dad, and she had turned up at my place. Ate a snack here she'd bought herself. Brother said if he hadn't been there, Dad would not have had lunch until I drove her back at 3pm!!!

Mum didn't say anything about this, I think she took it for granted that brother there meant Dad looked after. I think he is trying to drive the point home to Mum about what he does do for Dad (and her). He also said that he had to throw away fresh chicken as it wasn't put away to freeze (left over from Sunday), she still hasn't used the cooked chicken from Sunday - I had to prepare meal for them as brother was going and didn't want any.

I think he does need respite, to step back, does need to show Mum she needs prompting/support, and I really wanted to step in and do it all for her. If I do that, she won't see how much help she needs. Fighting the urge to rush round and make sure Dad is fed. Think I will ring up to see...

Dad fed with his puree. Sadly Mum said she didn't eat as she didn't feel like it and apparently brother hasn't been down to cook anything for himself either. Mum says he does have snacks like nuts, raisins and crisps, but, she thought he looked ill Monday as in very hung over and only appearing to make himself black coffee.

Tried to encourage Mum to at least snack but I don't think she will... at least she usually has a good breakfast - lots of porridge with blueberries. Want to give them all a good shake but have to take dog to vets hospital now... : (

 

[Sarasa]

Hope your dog is OK @fluffbucket, you really have enough to worry about without your dog being poorly too.
I think your mum is at the stage where she thinks she is doing things, but isn't so chickens don't get put in freezer etc. She is probably 're-organising' things too, hence missing shopping list. Although she has a purpose when she goes out, she obviously gets distracted and doesn't always realise a trip out isn't appropriate, hence going the wrong way to the supermarket, and going to your place when your brother thinks she is making your dad's lunch.
It seems to be that your brother is damned if he does help as that gets your mum upset, but also damned if he doesn't because then your dad suffers.
I'd keep on nagging social services etc, as things really can't go on like this for much longer.