I feel so guilty

[angelmarbella]

I feel so bad - Mum has Alzheimers, my dad died 5 years ago, I live in Spain with my family and my brothers in London 200 miles away from where she lives. She never wanted to live with any of us and only feels okay in the familiarity of her own home with her dog.

I won't list all the incidents that have happened but I have been reading these bulletin boards and so much of the behaviour is so typical of my Mum.

We tried her with live-in carers but she threw carer no 3 out and the agency wouldn't have her on her books again. Now we have a wonderful lady who goes in for 2 hours a day Monday to Friday and a service which gives or prepares her lunch daily which she invariably doesn't eat, but they keep an eye on her.

I visit from Spain every 5 to 6 weeks for a few days and talk to her on the phone daily and monitor the care as much as I can from here. It is very hard.

She says if it were not for her dog she would kill herself (which is one of the reasons we could never consider a care home for her as most don't take dogs) and she would never ever go unless we forced her which I could not live with myself if I did that. We will have to reconsider live-in carers again somehow in the near future. She spends most of her time alone, on her bed with the dog, crying.

The thing is since she had a fire in the kitchen from frying an egg, which she denies, a few months ago and the fact that the fire services have been alerted (because of smoke sensors linked to the fire service) 4 times in last month because of burnt toast or hobs left on they have told us that Mum is a danger to herself so have told us we have to remove the hobs and main oven. We have just done it this week and instead she has been given a microwave, grill and oven.

She is terribly upset that she does not have a working kitchen and it makes me want to cry when I hear her sobbing on the end of the phone. She does not know she is ill, does not understand the reasons and it is just so hard to explain and, on top of it, I am not even near her. I really cannot afford to visit her more than I do as it entails flights and hotels and it all really mounts up.

I spoke to the Fire Services and they insisted we had done the right thing by taking away the hobs and that we have to be "cruel to be kind" - in a way I wish she did not have this smoke sensor because she smokes like a chimney anyway and that is very dangerous as she can be careless with her cigarettes. Maybe on the other hand it is better to have the sensor as it would pick up a fire.


I just feel so bad, so sad and guilty about this hob thing though.

Sorry to ramble on - first time on here - just so miserable about this and I know it is going to get even worse. It is also affecting my relationship with my own family as I am down so much over my Mum.

 

[Jackcat]

Thanks for posting on my thread angelmarbella, yes, you're right, it does help to know others are in the same boat, hope it helps you too. Must be tough being at such a distance, bet your Mum forgets that and asks you to do things as you were just a few mins away? Mine regularly asks me to go and live with her, which I know would be a disaster for us both, but I still feel terrible. I've had a bad day today, but generally I try to find things to smile about with her, and the situation - like her telling me straight-faced that she'd phoned the fire-brigade because the fire alarm they'd fitted kept going off for no reason - the kitchen was black with smoke at the time! I also keep reminding myself it's better to humour her and not to express my frustration, until we find out for sure what's going on. Her brain scan was completely clear and the docs are saying it might be an anxiety disorder rather than a dementia. Mind you she puts up a good front in their presence, denies there is much of a problem, which I gather from this forum is not unusual. I think you and yours have done the right thing with the POA's, and would suggest you get her GP to refer her to the hospital's memory clinic, or even better if there is one in her area, the nearest elderly mental health service (NHS). We finally got that arranged and they have been very good, despite her lack of co-operation, at slowly bringing into place the various services on offer (thus far at least), and have all been willing to talk to me separately from her. I never thought I'd say it but I am looking forward to them appointing a social worker and a community nurse for Mum, as I know I'm going to need their help at some stage! My brother is being great, she dotes on him and him her, but he has a family and kids and other demands on his time, and feels terirbly torn, just like you I know.

 

[jenniferpa]

Hi and welcome to Talking Point.

I am a former long distance carer (I am in the US my mother was in the UK) so I know how difficult this can be and how torn you can feel between "home" and "away".

I'm not sure how much input you want: I can tell you that there are care homes that will takes pets, or give you tips to minimize the expense of visiting but this is never going to mitigate the guilt, really. I suspect you want to make this right for your mother, but that isn't going to happen.

The one thing I will say: if she is crying there is s real possibility that she is depressed. Now I know that sounds simplistic (I'd be depressed as well in her situation) but there may be medication that might help her. While I would never say 'drug her into submission" finding an anti-depressant that might allow her some level of contentment could only be a kindness, I would think.

What sort of contact do you have with her GP? There are good, bad, and bad that seem to be good GPs out there (the latter being the ones that "seem" to listen and then do nothing).

 

[angelmarbella]

Thanks everyone for your replies. It is hard being at long distance and even when I visit Mum, she forgets I have even been there. She has been to the memory clinic but both they and the GP tend to lose interest in her case although we regularly send updates on Mum's behaviour, for our sake really. All the care she has we have arranged ourselves and despite promised intervention of Social Workers one or two have popped in but have never kept in contact. Have never even heard mention of a Community Nurse. However am going to follow up both that and antidepressants which may be a good idea with the doctor now we have the POA. Good luck to you too!