if she were mentally ill i wouldn’t be calling her every day or visiting once a week

[lushr]

my mum is now paranoid, refusing to take drugs... they’re talking about having to admit her to a hospital if she does this again, she was hiding a pill in her hand and offering it to other residents, which meant she was a danger to others.

what happens then? if she goes to hospital?

can they chuck her out if she’s this non compliant?

more and more i’ve been thinking how one day she would go insane and end up in an asylum, and it’s has happened, only it’s a really nice nursing home with really nice staff.... but that doesn’t make her happy, or compliant... if i were a young child i’d be protected from her, not expected to visit her regularly and have her upset me....

i am supposed to take her to a hotel for several days in christmas but she’s so bad now i dunno if it’ll be possible...

im starting to think that i need to cut ties. i’ve been unwell, i’m not coping with mums constant unhappiness and her constant difficulty she is providing to the staff.... because she is distressed most of the time her dementia seems to be advancing really rapidly.

shes in this difficult phase i guess... i know it’s scary for her, but nothing i say or do makes it better... she is a “bottomless pit of need”

she’s always been depressive always needs outsiders to make her feel better... can never stand to be alone... she can no longer consider my needs.... she was ok once the other week. but most of the time she’s highly distressed and impossible to talk to. i feel sorry for the staff and stressed for them.... but it’s making me ill. it’s running me down... my physical health is already low. i’m using everything i have to keep an even keel under this stress of my only family member going quickly crazy.

i no longer need help with how to communicate with her because it’s all as if she’s sundowning now. nothing i say makes it ok. and i can’t make her feel calm because what she is saying is distressing to me because she is highly distressed...

and her physical fitness is perfect so... we’re looking at another 8 years probably of this and then the silence and then... i dunno.

i dunno how you all do it. i’m asking your permission to cut ties. that to protect myself i need to be seeing her once a month not once a week.... no more phone calls... no more stressing about things i have no control over.

 

[Grannie G]

You don`t need anyone`s permission @lushr. You are not legally bound to be responsible for your mother`s care.

Inform her doctor, your doctor and Social Services and then let go.

 

[lemonbalm]

Hello @lushr

I am sorry that things are so difficult. My mum (who has vascular dementia and is now in a care home) has often been like this over the past three years or so and I understand completely how you feel. Firstly I would ask if the staff have checked and rechecked for urine infections. Secondly I would ask if they have arranged for an urgent review of medication. These can help tremendously and need to be carried out frequently, in my opinion. Thirdly I would advise you to most definitely to not even consider taking your mum to an hotel for a few days. This is seriously not a good idea. Yes, she might have a good few days but what if she has a "bad patch"? There could be screaming. Don't do it. Seriously, just don't.

I had to move mum from her previous home as they were unable to cope with her "challenging behaviour". If the current nursing home cannot cope, this might be an option for the future. However, I think a med's review and checking for infection should come first. The staff also really need to check that your mum has actually take her medication and not kept it in her hand or can spit it out. There may be liquid forms of medication which are not so easy to discard. They should be considering all these things, so have a chat with a senior staff member to discuss this. They can consult the doctor or Community Psychiatric Nurse for advice, who should be able to make suggestions on how things can be improved.

Keep posting for advice and support. This is extremely difficult stuff to deal with.

 

[kindred]

my mum is now paranoid, refusing to take drugs... they’re talking about having to admit her to a hospital if she does this again, she was hiding a pill in her hand and offering it to other residents, which meant she was a danger to others.

what happens then? if she goes to hospital?

can they chuck her out if she’s this non compliant?

more and more i’ve been thinking how one day she would go insane and end up in an asylum, and it’s has happened, only it’s a really nice nursing home with really nice staff.... but that doesn’t make her happy, or compliant... if i were a young child i’d be protected from her, not expected to visit her regularly and have her upset me....

i am supposed to take her to a hotel for several days in christmas but she’s so bad now i dunno if it’ll be possible...

im starting to think that i need to cut ties. i’ve been unwell, i’m not coping with mums constant unhappiness and her constant difficulty she is providing to the staff.... because she is distressed most of the time her dementia seems to be advancing really rapidly.

shes in this difficult phase i guess... i know it’s scary for her, but nothing i say or do makes it better... she is a “bottomless pit of need”

she’s always been depressive always needs outsiders to make her feel better... can never stand to be alone... she can no longer consider my needs.... she was ok once the other week. but most of the time she’s highly distressed and impossible to talk to. i feel sorry for the staff and stressed for them.... but it’s making me ill. it’s running me down... my physical health is already low. i’m using everything i have to keep an even keel under this stress of my only family member going quickly crazy.

i no longer need help with how to communicate with her because it’s all as if she’s sundowning now. nothing i say makes it ok. and i can’t make her feel calm because what she is saying is distressing to me because she is highly distressed...

and her physical fitness is perfect so... we’re looking at another 8 years probably of this and then the silence and then... i dunno.

i dunno how you all do it. i’m asking your permission to cut ties. that to protect myself i need to be seeing her once a month not once a week.... no more phone calls... no more stressing about things i have no control over.

Yes, please do cut or lessen ties. You must consider your own health. Please see how you can put yourself first.
Warmest. Kindred

 

[lushr]

thanks for your suggestions, i just spoke to the gerontologist last week, they want to change her meds they gave me a few options, i know sedation is out of fashion these days but honestly knowing my mum, i think it’s the only thing that might help.

i will cancel the trip, it was only to a local city hotel but i think it will just disorient her more. and honestly i’m scared just to take her to the local shops...it’s not so much screaming as crying paranoia snivelling manipulative stuff. it’s the disease, but that doesn’t make it easier to deal with.

 

[Sarasa]

Hi @lushr , my mother could be very difficult when she first went into care, and I made the decision to only visit once a week and choose my time carefully as it wasn't doing either of us any good. Of course due to covid restrictions I've only seen her once since March. Mum was put on a small dose of lorazepam to try and deal with her behaviour. I think it helped to a degree. Every time I speak to the staff they say she is fine, but she wasn't exactly all sweetness and light the one time I did see her.
I doubt that we'll be able to take her out anywhere for Christmas, but last year we went to a local country house hotel for an early afternoon tea between Christmas and New Year. That worked well as it was the sort of place and food she liked, we went early enough that sun downing wasn't kicking in and it was so close to the home that I could get her back there in five minutes if there had been a problem. Certainly a few days out would have been difficult as the two Christmases before had been when she stayed at my brother's and couldn't cope with the change of scene. She was in her own home at the time. Certainly now she's in care I would never take her out overnight even if it were possible.

 

[Rosettastone57]

I don’t think you should feel guilty about visiting the home. My husband refused to regularly visit his mother when she was in care. The most he managed was once a fortnight. He and his sister were on the receiving end of her spite and emotional abuse all their lives and he certainly wasn't going to be on the receiving end of it with dementia as well.

 

[Canadian Joanne]

@lushr my mother was very aggressive, agitated and violent for quite a long time. She was on antipsychotics for about 10 years, as that was the best solution for her behaviours. I know I raised a lot of eyebrows and there are always those who like to judge, but in our case, it was the best way to calm my mother. She was very unhappy and these did help.

I had an incredibly wonderful relationship with my mother when she was well but it was different when she was diagnosed. Quite a few times, I took breaks from visiting of a week or two simply because she was so horrible and hateful.

Canceling the trip is the only thing you can do, except if you decide to take the trip on your own or with someone else. Just to give yourself a little break, if you can during these times.

 

[lushr]

@Sarasa thank you for your stories, they help me, yes they’re talking about putting her on lorazepam instead of diazepam, which she’s been on before and it made her very drowsy which is fine by me. her behaviour seems to escalate rather than settle, it’s been three months or so? they’ve been making allowances for me to visit due to her agitation.

i see her more now than i did when she lived on her own, because then, she understood i had a life and health issues of my own, we could talk each day and that was usually nice, that was only May... now... November she’s gone from an early stage 5 to late stage 5. the total lack of familiarity in her surroundings... her behaviour gets worse every two weeks.

@Rosettastone57 yeah i know how your partner feels. i had a good relationship with mamas. long as she was able to talk reasonably. consider both sides of the equation. but she dragged me and dad down with her depression all my life manipulating us and being the kind of selfish that very depressed people can be. telling yourself it’s an illness doesn’t change the way it shaped our lives.

@Canadian Joanne i think my gerontologist mentioned anti psychotics which would be fine by me, i hope mum doesn’t escalate to violent but she was paranoid for the first time today, like wouldnt take her meds paranoid, in the past it was just “who stole my stuff” paranoid. but they didnt seem sure antipsychotics would help. seemed to think she’d get parkinson’s style walking and leg weakness atleast that’s what the emphasis seemed to be in the conversation. it’s the alzheimer drugs i don’t want her on, they cost a fortune to maybe give 10% of a chance of relief and seem to have more side effects than benefits...
like you, it’s the fact she’s so incredibly unhappy.... she cannot see the bright side, cannot see all that she has... and clings to me while pushing me away. “not wanting to be in this world” is not really something you want to discuss with a tearful mother right before you present to your colleagues around the country! (yay for zoom, you can be anywhere at the flick of a button?!?)

thanks everyone for your input. atleast i have information to make some decisions on. i probably can’t cut her away as much as i should. but i’ll talk to a couple of friends whose mums also were pretty difficult, see how they dealt with it...

 

[Canadian Joanne]

@lushr the Alzheimer's drugs worked very well for my mother. She was on them the entire time of her illness right up until the week she died. I know they are expensive but you might want to give them a try. If you don't see any benefit after 3 months or so, then you can have them discontinued. But at least you will have tried. By the way, my mother never had any side effects that we were aware of.

 

[lushr]

@Canadian Joanne thanks for letting me know. mum went on the main one initially and it disrupted her eating. but i’ll think about it more. it’s really hard to get good research on these drugs, really you just don’t know till you try it...