Feeling helpless

[Anongirl]

Mum rang me earlier. She simply said "everything's in darkness". I asked what she meant and she just repeated it. I then heard the evening carer in the background (she has a 15 min carer in the morning and 15 mins in the evening). She came to the phone and said everything was ok, the lights were on and mum had asked her to ring my number so she could speak to me.

She came back on the phone and I tried to reassure her. I'm wondering if she's getting confused about whether it's day or night. She seemed agitated because it was dark outside and said she didn't like being alone. She's never said this before. When I asked her if she knew it was night time she got angry at me which she does when she feels confused.

The carer said she's noticed much more agitation recently and she's never seen her lose her temper but last night saw her throw a hairdryer across the room because it wouldn't work.

I'm left feeling helpless again. I live 11 miles from mum. I have no idea what she's doing right now. No idea. It terrifies me if I dwell on it.

As much as she says she wants to stay at home I can't help but think she needs people around her to ease her anxieties

 

[kingmidas1962]

I know just what you mean about the panic - my mum doesn't have dementia but she does live alone, and suffers from depression and anxiety - and if I think too hard about what shes doing at ANY given moment, I could so easily panic...

...I think there comes a time when the advantages of someone staying in their home are outweighed by the difficulties and anxieties that having to be there bring. If your mum were in care, for example - hopefully, in a really good place, there would be someone on hand for her to tell her fears to and, even if they didn't understand, would BE there to reassure and/or distract.

I wonder if she was speaking figuratively rather than literally - as in everything being in darkness was a way of saying she felt muddled and confused, rather than literally in darkness? I don't know ... maybe it was the first thing came into her head.

...anyway, I don't know what else to say really apart from that I do know how you feel about the helplessness of not knowing ... xxx

 

[garnuft]

Aw AG, I know what you mean. She will sink or swim, she has the space to do it, she is still at home.....you can't give more than you do. X

 

[CollegeGirl]

I know how you feel AG, I have the same helpless feeling wondering at all times of the day and night about what might be going on at my mam and dad's house, even though there are two of them there. I often wonder if he's lying unconscious on the kitchen floor and mam unable to do anything. . Very hard to deal with.

Trying to think of something practical that could help, and wondering whether some sort of remote camera system would help put your mind at rest? I think they work over the internet or 3G, and some can be accessed from your mobile phone, so you could check on her even when you're out and about, or at work.

I know this might not be practical or possible, and they are expensive, but thought I'd mention it just in case it was an option.

Otherwise, all I can do is say I'm thinking of you, and know a little bit of what you're going through.

xx

 

[Anongirl]

Hi KM. This is the feeling I hate. When I just can't help her.

Our mums sound very similar, dementia or not. I always thought my mum would have a breakdown. She got dementia instead.

I rang her back now the carer has gone. She seems calmer. Didn't mention the darkness. I think sometimes she must just look outside and be shocked by how dark it is. It is starting to go darker earlier now and that's only going to get worse. Coupled with never really knowing fully what time of day it is. She's watching TV now with a cup of tea.

I'm convinced that as much as she would hate moving out of her house, and I do think it is a huge fear to her, I think if she had people she felt safe with it would make a huge difference to her. I can't bear to think of the future of her living alone in that house.

xxx

 

[Anongirl]

Hi Gwen. You are right. Completely. And that's how I get through my days. My heart just breaks for her some days

Hi CG. I have thought about that a lot. How would I feel seeing her? I honestly don't know if I would feel better or worse! I'm curious though because it would help me know for sure if there were serious concerns or not. So far I've asked carers to tell me if they see anything worrying. I find it hard to hear them tell me they've seen a decline though. Although I know it will happen its harder to hear someone else say it I guess.

Thanks for listening. Just helps to get it off my chest sometimes xxx

 

[Miss A]

Hi AG, I don't feel that I can say anything to help but I wanted to say I am thinking of you and I totally empathise with what you case. Keep posting, I always find that it helps. Your mum is lucky to have you. Try and rest this evening, I hope tomorrow is brighter xx


Sent from my iPhone using Talking Point mobile app

 

[CollegeGirl]

How would I feel seeing her? I honestly don't know if I would feel better or worse!

I know. It's just a torment, isn't it? Try not to torture yourself, and get a good night's sleep and worry about it tomorrow (ha, like I can ever do that ).

Night night, AG xxx

 

[Anongirl]

Gwen I just read your chunterings thread. Thank you for replying to my ramblings when you are going through such trying times yourself. Sometimes I wish I could just give you all a big hug and we wouldn't need to say anything at all xxxxx

 

[Anongirl]

Thanks Miss A and CG. Sometimes I just feel better for discussing it with people who understand. I think people in my 'real life' must get fed up of hearing me talk about mum so I tend to keep my thoughts to myself. Sometimes talking about it is really draining because there's no answers and people don't know what to say!

Going to get my pjs on now. Night all. Hope you all sleep well xxxx

 

[Witzend]

It's such a worry, I know the feeling exactly. My mother would often say she was frightened at home, yet she could never say what she was frightened of. No amount of reassurance ever worked. Yet if I ever managed to get her out of the house (very rare) she would be anxious and fretting so badly a mile down the road that I'd have to take her back.

 

[Bevpet]

me too

Mum rang me



Your sharing here is as if I wrote it. It is so comforting to come here and read exactly what others are experiencing too. My mother had another aged care assessment this morning. This time with a Doctor too. But at the end of it I was told don't visit her so often if you get upset.

So I thought ok I won't visit, but one of her hearing aids went through the washing machine. Who is going to take her to get fixed. Any of the carers that stay for 15 minutes. What craziness for me to visit only once a week. She has lost over $600 in the last week and a half.
So I have taken her money and left her $30. Now I will have to do her shopping too. And I will do it, because there is no one to help her except me.

Beverley (Bevpet) perth western Australia.

 

[Anongirl]

Morning carer says she is still very confused this morning. Still talking about street lights and went back to bed.

When I rang her earlier this morning she seemed to know it was morning but was quite reserved. I'm at work now.

I absolutely and honestly have no idea what to do for the best

 

[CollegeGirl]

I'm sorry, AG, I wish I had some reassuring answers for you

Although ... had you thought whether she might have a UTI, causing her to be more confused than usual?

 

[Anongirl]

Hi CG. From experience of her last UTI she was more manic really.

She seemed a bit less confused later this afternoon and my brother rang her and said she seemed fine too. Clearly she is having lucid moments and then things are throwing her. I do think things have progressed a bit recently. Both morning and evening carers have said they've noticed it.

Whoever said life is a rollercoaster certainly knew someone with dementia!

 

[CollegeGirl]

Aw, I'm sorry .

Big hugs xx

 

[Anongirl]

Thanks CG xxx