Mother newly diagnosed

Splashing About

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Oct 20, 2019
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@ Splashing About but a permanent solution takes time, what about in the mean time? Something has to be done, imagine how scared her mum is, just because it’s not real, it’s real to her, the fear is real, I couldn’t ignore my mum when she was frightened and things don’t make sense.

Yes I agree. I have moved in with my mum (slept in bed with her!). However practically if you are employed and have your own family who need you it’s impossible to make yourself free every night to sleep over. This issue is not going to go away.
 

Hil76

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Jan 5, 2020
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I’d look into sheltered housing but and this is a big but...how long will this work for? Alzheimer’s is a progressive condition and moving more than once could be very unsettling so you need somewhere that can cope with moderate (or more) disease.
Also financial concerns....consider how the funding may pan out and who needs to consider paying for this long term.
I agree, the less progressed the illness the less likely the amount of stress, they’ll settle more quickly and confusion caused by the move wouldn’t progress the disease, later in the illness the confusion is lasting generally.
 

Hil76

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Jan 5, 2020
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Yes I agree. I have moved in with my mum (slept in bed with her!). However practically if you are employed and have your own family who need you it’s impossible to make yourself free every night to sleep over. This issue is not going to go away.
I know, we’re saying the same thing here, I’m not disagreeing
 

Hil76

Registered User
Jan 5, 2020
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Regarding family issues: I think dementia throws up all sorts of issues because invariably one person carries the bulk of the emotional and practical support and the others can’t understand what the problem is or don’t wish to.

Unless you are faced with the phone calls, frequent visiting, seeing the issues and worrying about immediate concerns, worrying what lies ahead, are they safe, should you do more....you don’t grasp the unrelenting emotional burden.

I can’t answer this one I’m afraid as I feel that my relationship with one sister has been badly affected because I’ve felt so hurt by her approach. Right now she’s actually stepping up but last year when I was rock bottom and desperate I felt rejected in my pleas for help and accused of making it up. It’s affected me at a very low time.
@Splashing About Do you mind me asking do you resent that? That you carried the main burden of it? It’s true, unless you’re in it as supportive as they are they will never know what it’s like.
 

Splashing About

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Oct 20, 2019
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@Splashing About Do you mind me asking do you resent that? That you carried the main burden of it? It’s true, unless you’re in it as supportive as they are they will never know what it’s like.

No I don’t think I resent carrying the main burden. I think I resented the lack of appreciation or support. Another sibling does far less than me but has always stepped up when asked and offered encouragement, support and affirmation for the work I’ve done. I think I had carer burn out and at that point I really needed it. Generally I just get on with it.
 

Hil76

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Jan 5, 2020
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I suspect she really had no idea and by the time she ‘got it’ I’d suffered a lot of stress and her obvious distrust of my actions and veiled disdain for me really hurt me. I’m going to try and put it behind me because as you say family should be a support to each other. Actually this forum is useful to get it off my chest :)
No family is perfect, my mum has just gone in to a care home and I’m finding it very hard to deal with and my siblings don’t understand that feeling, I feel as if they think I shouldn’t be as affected by it, but they weren’t there with mum all the time looking after her, they don’t realise the emotions that a carer feels when a loved one has to go into a care home, as much as this has affected them, they have no idea how it’s affected me, it’s different for me because I was always there, it’s been heartbreaking and I’ll never be the same.
 

Rachel69

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Jan 5, 2020
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@Splashing About I didn’t know whether sheltered housing is suitable for a person with dementia and you’re right about moving her twice.
She’s very socially isolated and doesn’t see anyone all day unless me or my sister visit. She’s happy in her own world but I do think she’s lonely. My sister has said I should pack up work and be mums carer as I’m the closest sibling but that’s not what I want to do.
It’s a minefield isn’t it, I hope things sort themselves out with your sister.
 

Rachel69

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Jan 5, 2020
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Apart from my mum, i do have my own health issues to deal with and have regular treatment which isn’t good. I don’t think my sister appreciates that and my brother isn’t local so can’t help.
 

Hil76

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Jan 5, 2020
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No I don’t think I resent carrying the main burden. I think I resented the lack of appreciation or support. Another sibling does far less than me but has always stepped up when asked and offered encouragement, support and affirmation for the work I’ve done. I think I had carer burn out and at that point I really needed it. Generally I just get on with it.
I know what you mean, although in theory they think they know, they’ve no idea and they weren’t faced with awful feeling of for example the day mum couldn’t dress herself, things like that, I suppose they were shielded in a way, and it was just me and mum in the house, there was nobody to go and talk to, they’ll never really appreciate it because they can’t imagine just how horrific it really is, believe me, I was glad of my sister etc but there were times that I was furious about it all
 

silkiest

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Feb 9, 2017
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Hi Rachel I'm amazed that your family can suggest you give up work - how do they imagine you will manage financially. Carers allowance is minimal compared to an actual wage.
Do you and other family members have power of attorney for finance and health. If not you need to get it arranged soon before your mum is unable to give consent. This will help as the illness progresses and you need to get more involved in her life and care. You can find the forms on the government website and it only costs £80 for each one, less if your mum is on benefits.
 

Splashing About

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Oct 20, 2019
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@Rachel69 I too am gobsmacked that a family member thinks they should advise YOU to take such a major life decision. Perhaps they could relocate...

@Hil76
...it’s different for me because I was always there, it’s been heartbreaking and I’ll never be the same.
. :( I know what you mean. Dementia has changed me forever.
 

Splashing About

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Oct 20, 2019
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@Rachel69 Why don’t you visit a few homes (on your own) until you find a really nice one. I went around 13 and learned a lot about types of home, differences...what mattered to us, what would suit mum etc. Don’t judge on the first home if it’s awful...some are! Some are really good and offer activities, outings etc
 

Rachel69

Registered User
Jan 5, 2020
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I’m glad you all agree with me that my sister is out of order. My sister wants to move my mum closer to her so she doesn’t have to travel 40 mins once a week.
We do have power of attorney, luckily we arranged it last year before mum started to get too bad.
I will do some homework and check out some care homes or sheltered housing. Thank you x
 

Quite contrary

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Jan 5, 2020
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Ilford, Essex
I really do not feel that sheltered housing would be an option. These days, most only have staff on duty during the day, unless it is sheltered housing with extra care but even then I feel they are not equipped to deal with anything other than physical disabilities. My Dad and my brother-in-law were both in that kind. It worked wonderfully well for my dad, who only had physical problems, but for my brother-in-law (mental health problems) it went completely pear-shaped!
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
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Nottinghamshire
Hi @Rachel69 , I think your mum would benefit from being in the right care home. My mother was very independent, and didn’t think there was anything wrong with her. The GP agreed with her as she passed the mini memory test. It was only when he got her to talk about the neighbours coming in, stealing things then bringing them back that he realised something was awry. Mum then refused to go to the memory clinic, so we were at a bit of an impasse till she had a meltdown in the doctors surgery and they got the psychiatrist to visit her at home unannounced. He diagnosed vascular dementia.
Neither my brother or I lived close and my brother wanted mum to move to sheltered accommodation near him. I thought that wouldn’t be enough and in the end we agreed she should move to a care home near me. It’s been a bumpy eight months so far, but she is in the best place.
Maybe your sister and you could look at places in your local areas and decide where would suit her best? Mum is still down for a place near my brothers, and may move there sometime, but at present that isn’t possible.
 

Rachel69

Registered User
Jan 5, 2020
14
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@Sarasa thank you for your post, it’s good to know that your mum is settling in, did she live on her own? It must be hard for you too. I guess it’s not always possible to get the right location for a care home due to availability. I have thought about the carers route but she would probably hit the roof. I do live near my mum but it’s taking its toll on me and I can’t be with her 24 hours a day, I feel very guilty.
 

DesperateofDevon

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Jul 7, 2019
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My mother has recently been diagnosed with Alzheimer’s, she’s had a CT scan to confirm this. She lives on her own and is coping fairly well (so we think) but lately she’s been having hallucinations and keeps forgetting my dad has died.
I’m the only daughter of our family to live closest, my brother lives up north and my sister lives in Kent and doesn’t work. I work nearly full time and the late night phone calls are becoming a problem. She keeps saying she doesn’t want to be on her own and she’s terrified as she thinks the gate posts are men watching her house. We don’t want to put her into care but we’re at a loss of what to do. I’ve started to suffer from anxiety as I sit at home at night and wait for the phone calls. I’d be grateful for any advice. Thank you

Hello lovely, & welcome to TP.
I’m going to say that my own experience with Aged Mother & dementia means I’m a little brutal on the front of staying overnight with a person with hallucinations & dementia.

I found that me staying over meant that social services felt that it wasn’t necessary for them to action care more; & as I was basically sorting out the house to be more habitable the assessments repeatedly stated how clean & tidy it was &how well mum was coping!
Not the reality of it at all.
Carers were arranged by us & social services & cancelled by Mum repeatedly. The social worker told me repeatedly that a crisis point would have to be reached. But I didn’t want that to happen, so I continued down the stay over & run myself into the ground route!

to cut a long story short - that awful crisis point had to happen & did; & it was only then that Mum no longer could cancel carers after another couple of issues!

I’m afraid you have to face this dementia reality without emotion & cold logic - which like me I expect you are unable to do.
No matter what you do your Mum now needs professional help, if she won’t accept it & still has been deemed to have capacity I’m afraid all you can do is contact 111 when she rings you or the local on call 24hr mental health team in your area. You can google your local Clinical Mental Health Team & a 24 hr on call number is given.

I’m afraid that the due process that Social services require often excludes family experiences & evidence - social services have to see it for themselves ! Oh yes this experience has been repeated many times

Document each hallucination & phone call by calling 111. This will be sent to the GP.
Email the GP each time with your concerns, copy in the diagnostic mental health team & the social worker.

My mums hallucinations are made worse with UTI & I now just email the GP requesting a urine test. By law they have to respond within 48 hours.

it’s been a battle & not the pleasantest experience, but I have come to the conclusion that you have to let the crisis happen. Believe me it angers me that this is the system;but having lived with Mums poor mental health most of my life I am now resigned to the fact that this is it.

You could move in with your Mum & the hallucinations wont stop, her mobility will eventually be an issue along with continence issues. Unless you are able to meet all these physical & mental needs, balance your marriage, children & job, as for a social life we’ll forget that those even exist as there isn’t enough hours in the day or days in the week; sadly you need to step back a little & logically reassess the reality of the situation for a while.

Yes my lovely I have done this several times throughout both my parents dementia journey. It’s hard to do but necessary, please believe me.

Your Mum is obviously deemed to have capacity , which means she’ll make some poor decisions & these will have consequences. You have to provide social services through 111 call outs & repeated emails of poor decisions & dementia related issues evidence. It is only then you have the leverage to say “ this is a care issue as a family we can’t cope - this requires more than we can provide”

I truly wish you good luck & keep posting on here. The help & at times hard to swallow advice has been invaluable.

Eventually a lot of carers on here reach that breaking point & we all have similar experiences in one way & another.

Your Mums diagnosis means you have a starting point, her denial of diagnosis isn’t unusual. But at the end of the day it’s just naming the health issues, a group of letters forming a word. Those issues haven’t suddenly just appeared just become more noticeable & that does require medical action from the very overstretched services.

Please don’t fall out with your siblings,you are really going to need each other’s support in whatever form.

If you need to speak at anytime please message me
X
 

Rosettastone57

Registered User
Oct 27, 2016
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I’m glad you all agree with me that my sister is out of order. My sister wants to move my mum closer to her so she doesn’t have to travel 40 mins once a week.
We do have power of attorney, luckily we arranged it last year before mum started to get too bad.
I will do some homework and check out some care homes or sheltered housing. Thank you x

Hi @Rachel69 I agree with other posters I don't think it's a good idea for you to move in with your mother. My mother-in-law lived on her own near to my husband and I and she would have hallucinations especially at night. She had all kinds of hallucinations from strange doctors and medical staff coming into the home, to a man performing a sex act at the end of her bed. She had the local authority care link set up and the hallucination involving the sex act meant she pressed the link and ended up with the police calling at her home. Of course there was no one there .
My mother-in-law would have loved my husband to spend all his free time with her not withstanding that we both worked and didn't have the time for all this. In any event family members had decided many years ago that we were not going to be full-time carers for my mother-in-law. Had we started down the route of staying with her she would have expected that on a full-time basis and this would have led to more aggression and conflict from her.
My mother-in-law was fully self-funding and had no involvement with social services . We had lasting power of attorney both the finance and health and we used her finances to pay for a care agency three times a day. The carers began mainly to sort out her food and drink and prompt medication . We could not trust her to use the oven or microwave properly and she was in danger of not getting enough to drink during the day. The carers would come in every lunchtime and heat up a meal for her in the microwave they would then sit with her while she ate it providing a social event for her. As far as she was concerned of course there was absolutely nothing wrong with her,the reality was she could do little for herself. We ignored her complaints and aggression regarding not wanting the carers ,we stood our ground and the carers kept coming.

Eventually it became more obvious that anxiety and her loneliness were putting her at risk especially at night when she became more agitated. We knew that she would have refused point blank to go into a care home and my husband was not prepared to dupe her at that stage to get into full-time care. So we waited for a crisis and we waited and waited. Eventually in the heatwave of 2018 even with carers she became severely dehydrated and went into hospital. At that point we started looking at care homes and she went straight from hospital into a care home never going back to her own home. It was the correct decision she could not in our opinion be discharged home to the same situation. It became obvious that she could not cope when the carers were not there. She was a longer safe in her own home and she required a whole team 24/7 to supervise her.
 

Rachel69

Registered User
Jan 5, 2020
14
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@Rosettastone57 your mother in law sounds similar to my mum, she would object to carers but if we have to then we will, her welfare is top priority. She can still make a cup of tea but lately every time I go round there she’s making waffles and pie for tea and forgetting to take her meds. She is still able to look after her personal hygiene at the moment although the other day her cardigan was dirty so I made her change it.
She has her own property so I doubt she’ll get much help from the council, I’m also waiting for a crisis to happen especially with the hallucinations, she gets so distressed and the only way she calms down is if I stay the night which I don’t want to do. I keep telling myself that she isn’t well but it’s taking its toll x