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

[Fluff bucket]

I think you are in leic**********?
If so, may I suggest that you google Shuttlewood Clarke ….in mark field. It is a beautiful place with a coffee shop and also some activities that may or may not suit your mum!

@Starting on a journey

We are! ; )

I have googled, thank you, it may suit Mum although a little far to travel for us - it sounds lovely... I could say that I have discovered this lovely place to visit/want to try this/that activity and invite her to join....

 

[Fluff bucket]

Think I was hoping for something 'bus-able' or even walkable. In the south side of the shire... must get googling again...

 

[Fluff bucket]

i think he should remember that the house is your parents and its up to them what goes where. might be worth taking your mum out when your dads not there as she gets your brother full on and undiluted.

@jennifer1967

Sorry missed your reply jennifer...

I have pointed this out, that it is Mum's home too, just as much as Dad's. however it doesn't sink in. I now get the feeling that both Dad and brother want to shut me out totally.... families, eh...?

I did this yesterday. Brother doesn't seem to like this, giving Mum some time/attention, plus unfortunately I get a list of complaints from her....

 

[jennifer1967]

@jennifer1967

Sorry missed your reply jennifer...

I have pointed this out, that it is Mum's home too, just as much as Dad's. however it doesn't sink in. I now get the feeling that both Dad and brother want to shut me out totally.... families, eh...?

I did this yesterday. Brother doesn't seem to like this, giving Mum some time/attention, plus unfortunately I get a list of complaints from her....

i know, you can choose your friends but not your family

 

[Fluff bucket]

Sad but true...

Feeling really down and don't want to even go to parents, or face any more rows between bro and mother. Exhausted from stress, lack of sleep, driving Dad and Mum about, trying to ensure they have right meds, ordering meds, taking to appointments, taking Mum out as a distraction walking around shops for hours, or fetching groceries (then annoyance from brother Mum didn't stick to his list), with her venting all her emotions on me... then brother venting his emotions on me... both at their home and on the phone..., then taking poor old dog out, dog getting me up in early hours (she is an old dog and can't hold herself for weeing now as long as she used to bless her)... barely had the energy to do my own housework this week... let alone cook for myself. Had to force myself to cook rice for a rice salad...

Brother first telling me last week he won't write a list any more, then went off for 4 days, then back and then writing list again. Then changing it whilst we are out - adding/subtracting. Then not able to get some things...

Tried to help them to compromise, fail, but it is like neither of them can register what effect they are having on me or poor Dad.

Talked to brother about mediation and he immediately said he would be 'mediated out' of my parents home. Why would he say that?

I can't see any other way out of this situation - only outside mediation where they might at least talk civilly to each other as they won't listen to me or Dad...

I feel like just shutting my door and never going around again, or running away, or worse thoughts.... : (

I will force myself round there again to make sure the parents are ok...

 

[TNJJ]

Sad but true...

Feeling really down and don't want to even go to parents, or face any more rows between bro and mother. Exhausted from stress, lack of sleep, driving Dad and Mum about, trying to ensure they have right meds, ordering meds, taking to appointments, taking Mum out as a distraction walking around shops for hours, or fetching groceries (then annoyance from brother Mum didn't stick to his list), with her venting all her emotions on me... then brother venting his emotions on me... both at their home and on the phone..., then taking poor old dog out, dog getting me up in early hours (she is an old dog and can't hold herself for weeing now as long as she used to bless her)... barely had the energy to do my own housework this week... let alone cook for myself. Had to force myself to cook rice for a rice salad...

Brother first telling me last week he won't write a list any more, then went off for 4 days, then back and then writing list again. Then changing it whilst we are out - adding/subtracting. Then not able to get some things...

Tried to help them to compromise, fail, but it is like neither of them can register what effect they are having on me or poor Dad.

Talked to brother about mediation and he immediately said he would be 'mediated out' of my parents home. Why would he say that?

I can't see any other way out of this situation - only outside mediation where they might at least talk civilly to each other as they won't listen to me or Dad...

I feel like just shutting my door and never going around again, or running away, or worse thoughts.... : (

I will force myself round there again to make sure the parents are ok...

Just step back. You are heading towards a carer breakdown. As apparently they have capacity you will have to let them deal with it. You cannot change people only your actions.Easier said than done I know.I haven’t been in to my dad in over a week but he has carers and they now have all the responsibility. But I have been on the end of the phone. I have ordered delivery on line for food. Paid all the bills etc. I get dad’s medication delivered for free. WFF come with food once a fortnight. I don’t run around like I used to. I can’t. You need to somehow find a balance. Take it from one who has been there and wound up ill.((hugs))

 

[Starting on a journey]

@Fluff bucket , maybe time to step back for a few days and recover. You will need to be kind to yourself . Priorities first, 1)dog 2) you get some rest , relax and eat well . (Put dog at 1 as he can’t look after himself)

At the moment I have a lot of challenges but am taking it easy today (easy ish) got to or I won’t be fit for anything next week.

 

[Sarasa]

I'm afraid mediation if you mean between your brother and your mum won't work. Your mum is likely to forget anything that you've agreed even if she seems to understand at the time.
I too think you need to have a break for a few days. Maybe your phone could 'break' so neither your brother or mum could contact you.

 

[Jaded'n'faded]

I'm starting to get a bit annoyed with your brother! I've been following your thread and I really gave him the benefit of the doubt earlier, because he's there and he's helping and it's not easy....

But the way he's trying to move your mum out and move himself in is just unacceptable. I would question his motives re. the house and suspect you are not getting the full story about his 'other' accommodation. As for moving your mum's stuff out of the kitchen to replace it with his - no, no and just no. How dare he?!

I'm sure your mum is capable of being extremely annoying at times (no offence!) and I appreciate that people with dementia can cause a lot of frustration but his attitude seems to be, 'I'm looking after my father. You (i.e. your mum) are not wanted or needed here.' It's incredibly cruel.

I really wish I had some good advice for you but you seem to be doing everything you can to mediate anyway. I do wonder what will happen if your dad deteriorates or has to move to a hospice/hospital. That would leave just your mum and brother in the house together - not a good combination.

I also think you need a break. No one wants a crisis but I think that's the only way things will change.

 

[Fluff bucket]

Just step back. You are heading towards a carer breakdown. As apparently they have capacity you will have to let them deal with it. You cannot change people only your actions.Easier said than done I know.I haven’t been in to my dad in over a week but he has carers and they now have all the responsibility. But I have been on the end of the phone. I have ordered delivery on line for food. Paid all the bills etc. I get dad’s medication delivered for free. WFF come with food once a fortnight. I don’t run around like I used to. I can’t. You need to somehow find a balance. Take it from one who has been there and wound up ill.((hugs))

@TNJJ

I do step back now more, as brother is doing a lot for them now in their home, in fact he actively discourages me from doing anything for them... unfortunately I can't 'switch off' as I then worry what is happening at their place.

I feel I have to do anything that involves driving (due to suspicion about brother's capacity/his own forgetfulness/alcohol dependency/H&S worries) and medical appointments (keeping up to date with notes on mum and dad's issues/symptoms). This then involves chasing up medics/results and prescriptions as parents are forgetful and have run out of meds i.e. forget to order them. I have asked parents to get these delivered (I am now able to order their meds on-line for them with their permission).

So if I am not there, I am on the end of the phone, for them. Tried doing the food delivery but Dad refuses - price, his own food intolerances & of course, brother is there cooking for them.

Getting a balance - I know I need to do this before burn-out strikes.... : (

My worse case scenario - Mum has already expressed that she will kick brother out if Dad isn't there for any reason (hospital/hospice/passed), not sure what brother would do.... : (

Thank you for the virtual hugs x

 

[Fluff bucket]

@Fluff bucket , maybe time to step back for a few days and recover. You will need to be kind to yourself . Priorities first, 1)dog 2) you get some rest , relax and eat well . (Put dog at 1 as he can’t look after himself)

At the moment I have a lot of challenges but am taking it easy today (easy ish) got to or I won’t be fit for anything next week.

@Starting on a journey

Trying.... poor old dog is struggling with walking now, my poor old girl...

I hope you do rest (trying to take my own!)... take care

 

[Fluff bucket]

I'm afraid mediation if you mean between your brother and your mum won't work. Your mum is likely to forget anything that you've agreed even if she seems to understand at the time.
I too think you need to have a break for a few days. Maybe your phone could 'break' so neither your brother or mum could contact you.

@Sarasa

I am realising what you mean. Mum was confused over her meds yesterday, as to which ones actually were for her AD, even though I have conversations where she seems totally with it...

I 'accidentally' ignored phone when one of them called, claiming I was out of earshot.... at least for one nights break from it....

 

[Fluff bucket]

I'm starting to get a bit annoyed with your brother! I've been following your thread and I really gave him the benefit of the doubt earlier, because he's there and he's helping and it's not easy....

But the way he's trying to move your mum out and move himself in is just unacceptable. I would question his motives re. the house and suspect you are not getting the full story about his 'other' accommodation. As for moving your mum's stuff out of the kitchen to replace it with his - no, no and just no. How dare he?!

I'm sure your mum is capable of being extremely annoying at times (no offence!) and I appreciate that people with dementia can cause a lot of frustration but his attitude seems to be, 'I'm looking after my father. You (i.e. your mum) are not wanted or needed here.' It's incredibly cruel.

I really wish I had some good advice for you but you seem to be doing everything you can to mediate anyway. I do wonder what will happen if your dad deteriorates or has to move to a hospice/hospital. That would leave just your mum and brother in the house together - not a good combination.

I also think you need a break. No one wants a crisis but I think that's the only way things will change.

@Jaded'n'faded

This is what worries me. He ends his round of complaining about Mum with the words 'she should be in a home', and worse 'when is she going to cause the next fire? Its just a matter of time' which stressed me out horribly, I couldn't sleep for worrying about this. I had to remind myself of the fact that all candles are gone (turfed out after fire as this was the cause - unattended candle), they converted from gas hob to induction well before this, and already have an electric oven. Plus additional smoke alarms everywhere donated from fire service. Plus de-cluttering some of Mum's hoard as the fire commander described it as 'a tinderbox', which enables Dad to move around safely.

I recall brother showing me kitchen towel roll next to induction hob, and him saying my parents leave it there, which is a fire hazard. When I know they don't, it's always kept on the 'pole' on the worktop half-way between the sink and hob...

Which then sends me worrying if brother is 'staging' things to drive his point home, or, worrying that Mum has moved this... doing my head in...

He has gone again, and smelt of drink when I hugged him, so still never know when he will be back....

I felt intimidated by him shouting about moving her stuff (yes, it's hoarded and not used, but it is her choice); I think myself he is being too cruel. Mum wants to be there for Dad, in his final days, there is still a bond, e.g. she helps him dress and they peck each other and say they love each other. That closeness and awareness is still there. She still knows us, and can talk to us, and sometimes I feel I have the 'old Mum' back...

 

[CardiffGirlInEssex]

@Fluff bucket you really are going through the mill here and I feel for you. Last year when I was in an extremely stressful situation with my parents, I found it best to let calls go to the answering machine/voicemail. Not stress free but not as bad as actually answering. Also I programmed mobile and landline phones to not ring between 10pm and 7am. I'm 200 miles away from my parents so, however bad it is, I can do nothing about it in less than 5 hours anyway. Your fears about your brother's safety as a driver are more than well founded, by the sound of things, but is there anyone else who could help out with driving? And with the shopping, is it possible to present it as a no arguments done deal? It's really hard, we are programmed to "obey " our parents and also want them to have as much control over their lives as possible but sometimes this puts us in an impossible position when it's their safety at risk.

 

[Fluff bucket]

@Fluff bucket you really are going through the mill here and I feel for you. Last year when I was in an extremely stressful situation with my parents, I found it best to let calls go to the answering machine/voicemail. Not stress free but not as bad as actually answering. Also I programmed mobile and landline phones to not ring between 10pm and 7am. I'm 200 miles away from my parents so, however bad it is, I can do nothing about it in less than 5 hours anyway. Your fears about your brother's safety as a driver are more than well founded, by the sound of things, but is there anyone else who could help out with driving? And with the shopping, is it possible to present it as a no arguments done deal? It's really hard, we are programmed to "obey " our parents and also want them to have as much control over their lives as possible but sometimes this puts us in an impossible position when it's their safety at risk.

@CardiffGirlInEssex

Yes. I feel I am between the rock and the hard place.

Did not know you could program phones like that... I do worry that when bro is gone, if Dad falls, I would need to go round to assist as Mum can't lift him, & he can't lift himself now...

The other sibling works long hours & is an hour's drive away, unfortunately, but is taking some days off from this week to help, so I need to have a long conversation about all this.

I just feel that whatever is agreed, brother would find fault, goalposts keep moving... : (

Yes, trying to find the right balance between help/support and independence is hugely difficult when one insists they are perfectly all right, and the other, that they can manage... : (

 

[Knitandpurl]

Hello all

This is my first post, and, we are all coming to terms with Mum's diagnosis. A little worried because although Mum agreed to assessment, she now seems to be denying the results, e.g. 'anyone can forget their address...' etc...

Not sure how to approach it, but, I keep saying that as the consultant said there is medication, I would wish her to take it so I don't lose 'her', as in her lovely personality. And if one tablet can keep her with us, then, I think it is a positive thing... Still to have her ECG and they won't prescribe until that's checked....

Donepezil really helped and helps my husband, especially with speech, remembering words and thinking capacity, on the rare occasions we have missed ( takes at bedtime) I can tell by mid morning. Does make his nose run though, anti histamines help with that.

 

[Fluff bucket]

Donepezil really helped and helps my husband, especially with speech, remembering words and thinking capacity, on the rare occasions we have missed ( takes at bedtime) I can tell by mid morning. Does make his nose run though, anti histamines help with that.

I am so thankful Mum is taking this. Had a GP review for her other meds, and was able to clarify that she needed more - half a pack has gone missing and can't find it anywhere, so GP is prescribing more. Sadly she won't let any of us peek over her shoulder to make sure she is taking meds, but, she is starting to partly use a dossett box so there is hope there....

 

[Sarasa]

Have a good hunt round for the medication @fluffbucket. My mum was convinced the neighbours were stealing it, so she kept it safe by hiding it under her pillow or right at the back of cupboards. Fortunately nothing mum took was critical to her well-being as by the time she moved into care she was very confused about what to take and when. Mum has vascular dementia so donepezil wouldn't have been any use, but if it is helping your mum that is great.

 

[Fluff bucket]

Have a good hunt round for the medication @fluffbucket. My mum was convinced the neighbours were stealing it, so she kept it safe by hiding it under her pillow or right at the back of cupboards. Fortunately nothing mum took was critical to her well-being as by the time she moved into care she was very confused about what to take and when. Mum has vascular dementia so donepezil wouldn't have been any use, but if it is helping your mum that is great.

Hi Sarasa

We have looked every place we can think of, likely and unlikely, seem to spend most of my time looking for things she's moved.... wondering if she accidentally threw away the unused foil strip, mistaking it for the 'used' strip instead. Yes. I checked the bin, recycling, etc. Nope.... luckily she will be ok until end of the week with what she has, and even luckier that it does help, she seems to be 'with it' a lot more now she is on it... just glad the GP agreed to re-issue for her...

So sorry to read about your Mum, it sounds like you made the right decision about her care, that is a lot to take on...

 

[Fluff bucket]

Been a while since posting on here...

Don't know where to start. Mum went out one evening - Dad saw her put on her coat, then must have dozed, brother upstairs also asleep. When he came down a few hours later, no sign of her anywhere, hadn't taken phone as usual. Texted me and sibling. And other family members to search for her. He rang police as she is classed as vulnerable adult. All the right thing to do.

The disturbing thing was, when I went around to parents, brother found it difficult to stop smiling about it - supposedly he was stressed and concerned for her, but he couldn't conceal his delight totally that we had to call police.

I looked all over the place in the car for nearly 45 minutes, and, fortunately found her after thinking 'What place could possibly still be open she could walk to?' I persuaded her into my car, then had hell of a job calming her down. She really sobbed her heart out and spoke about 'Why was she here?' that her son thought she was incapable, that she had sat next to her sister's grave wishing it was her in there. And utterly refused to go home because brother was there.

It transpired that he had again shouted at her, something he omitted to mention, so she had walked out. That's a totally different thing to mindless dementia wandering. She finally agreed to stay with me overnight. However when I contacted Dad, he wouldn't hear of it... reluctantly she went home.

Then at the weekend in front of family visitors, he dropped into the conversation that Mum had done this 3 times, with only one call to police and this meant that after 3 or 4 calls the police would 'expect something to be done about her'...

I felt shocked and couldn't speak. It worried me hugely that, as I was advocating for her to stay in her own home (which is what she and Dad have always said they wanted) because she is early stages and mostly able to converse and recognise us, still able to function e.g. do chores, he is now finding a way to ensure she is put in a CH... I have been stressing out and having nightmares to the point of burn out...

He even called to claim a few days after the first callout that she had done the same thing again. I had to point out that Mum had called & spoken to her and Dad, and she told me she was going out (and where), he quickly rang off the phone with an excuse.

I have contacted several professionals about what is happening, so, it is recorded that she wasn't aimlessly wandering but avoiding a stressful situation in her own home. I shouldn't have to do this....

One of these was going to try and contact Mum too, although I said it might not work because of her deafness, however the last few days she seems a lot happier and has spoken to me that she knows she has rights. So I am hoping they have contacted her and she knows that she isn't struggling with this alone - with just me trying to help.

She also mentioned that both her and Dad had thought about leaving their home to my brother as he hasn't got anything. I was surprised at first, then I realise their thinking was that myself and other sibling do have our own places (no mortgages either) so secure. That brother has been through terrible things and no security or stability, and it would give them peace of mind to do this... Yet I have the underlying feeling that when poor Dad passes (as he is sadly likely to do in the near future) he will still do his utmost to oust Mum out of her home...

She again referred to the amount of empty cans of cider in the recycling... I feel well, helpless, depressed, stressed, burnt out and don't know which way to turn.