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Feelings of dread and guilt

Always stresse

New member
Sep 4, 2019
9
I finally got the courage to join the forum after months of deliberation, I don’t know why maybe it’s because I don’t know where to start here goes. My mother had been diagnosed with dementia and she had been displaying delusional behaviours such as people living in the house. She lived alone and I would get phone calls often and about her dead brother living with her, I was always very close more so than my brother but it come to a stage when she had a couple of falls and I wanted to go on holiday and I needed for her to go in respite which she did and she agreed to stay long term in October last year.

My mum was never the easiest person to get along with she always expected me to care for her and help out as if it was my duty and if I found her unreasonable she would always say I wish my mum was alive today suggesting I didn’t appreciate her, I always gave in and I’ve always tried my best. My dad died also three years since with dementia it’s seems a cruel blow to have to experience this again but my mothers behaviours are so much worse than his, since she has been in the residential home I have always taken her out at least twice a week she just loved getting out but she became very demanding not asking me to take her to her parents house but saying ‘take me’.

Over the recent months her delusional behaviour has got worse then came ‘LOCKDOWN ‘ she wants to go and live with her dad she says he lives around the corner my mum in 83 years old her parents died a long time ago I tried in the past to tell her but she went hysterical and I had to leave her distraught so I just try and go along with it best I can but she can get very nasty and she’s paranoid another resident is stealing from her and she constantly wants to leave and every time I go I get the same story and she gets angry with me because I don’t have the key to her dads house she has phoned me frequently from the home so I told them not to let her phone me when she is displaying this behaviour she makes me feel so guilty I was upset today and she said my tears meant nothing to her and she will never forgive me for not helping to get her out of there asking me to phone the police to help.

She has just started some medication which I truly hope has some effect as I have spoken to the care home manager and I think they are struggling with her behaviours, she has been very rude and nasty with them too and she said that i should take the calls from my mum as it’s a form of support for them to help deal with her behaviours but she reassures me they will persevere with the medication before any drastic measures are taken it’s my biggest fear if they can’t look after her anymore as we both agreed she wouldn’t last long in a dementia unit. I feel so upset and the manager says don’t take what she says personally but my mum has always had a bit of a side to her and I can’t help it. She says things to make me feel guilty not that I don’t feel like that already having a bit of freedom now lockdown has been relaxed and she’s stuck in there I don’t know what the solution is there’s probably no one I just needed to get my feelings out there sorry for the long post..
 

canary

Registered User
Feb 25, 2014
13,624
South coast
Hello @Always stresse and welcome to DTP.

Im sorry that you are having such a difficult time with your mum, although I must say that all the things that you describe I recognise from my mum and I think they are par for the course with dementia.

Im not sure why the mums care home manager thinks that your mum will not last long in a dementia unit, because actually, while I was reading your post I found myself thinking "I wonder what sort of care home she is in - I bet its not a dementia unit, because the staff dont know how to deal with her". My mum was in a dementia unit and she thrived there.

Before mum went into her care home (dementia unit) she was living at home and became totally paranoid. She thought other people were living with her, she thought people were stealing from - including me and she also thought I was abusing her, so most of the time she wouldnt let me over the doorstep. She was getting into arguments with her neighbours over the bins, the woman across the road contacted the police because she said that mum was harassing her. Mum thought she was being poisoned and wouldnt eat anything that anybody else made for her, but she had also forgotten how to cook, so she was existing mostly on cake and biscuits and was losing weight. She wasnt washing or changing her clothes and then started wandering out of her house, very inadequately dressed, in the wee small hours of the morning and knocking on neighbours doors because she couldnt find her home - and she didnt mean her own home, she meant her childhood home. She was declining so fast that I honestly thought that she would only live a few months more.

Eventually she had a TIA, ended up in hospital and went from there to her care home/dementia unit. Within 24 hours they had got her showered and dressed in clean clothes. After two months her delusions and paranoia had gone, she had made friends. put on some weight and was happy - and all of this was achieved without recurse to any medication. She lived for a further 3 years and passed away in the home.

The thing is, you see, that in a dementia unit the staff are trained and are experienced in dementia care in a way that an ordinary care home is not. They knew how to cope with mums outbursts, how to placate and cajole her in ways that simply amazed me. You should not have to deal with your mum over the phone - the staff should know how to deal with her, but they dont.

I would actually start researching dementia units, because I think that very soon that care home will not be able to cope with, what is effectually, the normal progression of dementia.
 

Always stresse

New member
Sep 4, 2019
9
Hi than you for your post and your kind words. I had a bad experience of a EMI home with my dad and I just can’t imagine my mum settling in one but in reply to the care home I had always found them very good with her the care home manager could always get around my mums behaviours in the past she got my mum a name badge because my mum thought she worked there my mum thinks there’s nothing wrong with her she dresses very glamours and puts make up on every day earning the title of Liz Taylor the manager would take her out sometimes to the shops in her car and also gave her a nice big room but now all my mum does is pack all her belongings on her bed wanting to move in with her dad.

Having said how good ,they are I do think they may be out of there depth they do take residents with mild dementia and she did tell me today they were having some dementia training and I do agree with you I don’t think I should have to deal with these phone calls I really dread the phone calls I get from my mum I also feel that my mum has become more manipulative and cunning to try and get in touch with me, apparently she has my number on a bit of paper in her bag and asks another resident who has her own phone to phone me I have had to block the number she makes stories up and says she’s not well and will I pick her up when I say I can’t I just get the phone put down on me or when I visit the door shut in my face I just can’t cope with it I do dread visiting her.
 

canary

Registered User
Feb 25, 2014
13,624
South coast
Its no good if you are dreading visiting her. Mum became a whole lot of fun again once she settled in her care home. Yes, I think you are probably right that your mums care home is getting out of their depth as your mums dementia progresses.

Im sorry you had a bad experience with your dad, but please dont tar all dementia units with the same brush. At least you know which one to avoid.....
 

lemonbalm

Registered User
May 21, 2018
672
Hello @Always stresse . I'm sorry that you are going through this but understand completely how you feel. I had to move my mum after a year in her first care home , as they couldn't cope with her behaviour, which can be very aggressive and at times violent. She has now been in a small dementia care home for 2 years. I must confess that it has not always gone well. However, the staff continually monitor her and, with with help from the doctor and community psychiatric nurse, try to keep her as calm and happy as possible.

It would be wise to put some feelers out for other care homes but, in the meantime, perhaps the medication you mentioned may do the trick. Mum's medication is tweaked on a regular basis. One of many things I have learned is not to knee jerk. This very difficult stuff to deal with, so keep posting for support and advice.
 

Always stresse

New member
Sep 4, 2019
9
Hello @Always stresse . I'm sorry that you are going through this but understand completely how you feel. I had to move my mum after a year in her first care home , as they couldn't cope with her behaviour, which can be very aggressive and at times violent. She has now been in a small dementia care home for 2 years. I must confess that it has not always gone well. However, the staff continually monitor her and, with with help from the doctor and community psychiatric nurse, try to keep her as calm and happy as possible.

It would be wise to put some feelers out for other care homes but, in the meantime, perhaps the medication you mentioned may do the trick. Mum's medication is tweaked on a regular basis. One of many things I have learned is not to knee jerk. This very difficult stuff to deal with, so keep posting for support and advice.
 

Always stresse

New member
Sep 4, 2019
9
Thank you for your reply it’s not easy although I know things would be unbearable if she lived alone had a bad day recently got a call from the home to say she’d escaped after immense worry the Police phoned me to say she’d been found, she’s back there now but she’s still saying she wants to leave it’s never ending.
 

lemonbalm

Registered User
May 21, 2018
672
I'm sorry to hear that. I must admit that my mum has tried to get out several times in the past (she did manage to get out of the previous care home which was not as secure - and punched a carer in the process) and, when I was visiting, would sometimes be at the door rattling the catches and shouting if she was having a bad day. It's almost unbearable to think about it. She does have good and happy patches as well as bad now though (I am typing with my fingers crossed) and I just hope that as the dementia progresses, she becomes calm and content all the time, even if that means she is perhaps less aware of her surroundings - and of who I am.