Reluctance to cope

[NIK51]

I'm struggling with Mum at the moment. We still don't have a diagnosis but she's going through various tests - just had a 24 hour heart monitor thingy so we don't know if she has dementia yet.

Everything seems to be going to pot. She's decided that she can't cope with anything and demands total attention. She's always been a bit controlling but I can't move these days because she won't even try to manage things for herself which leaves me going spare trying to make sure stuff is done.

Just this week she had a dental appointment that I booked for her, I put it on on her calendar and mine and arranged to take her but something else came up. I asked her to cancel the appointment - something she's more than capable of doing - but she just didn't bother and when I asked her why I got 'I'm so stupid, what would I do if you weren't here' etc. She won't do a single thing to help herself and it's exhausting.

I have to keep an eye on the fridge - she will never check dates on things and uses out of date stuff willy nilly and she then uses that as another excuse as to why she can't cope if I'm not there. I stay over several nights a week which is a nightmare. I can't even go to the loo without her coming to 'find' me if I'm more than two seconds.

This is going to sound horribly selfish but I can't give up my entire life to fuss over her can I? The Phantom Sister thinks one phone call a day is duty done but I'm not getting a second to myself. I spend every spare minute at Mum's because she gets in a tizzy if I'm not there but my own house is turning into a dump because I'm not there to attend to it I work too which The Phantom Sister does not so I think she could take some of the responsibility but Mum would hate it as The PS has no tact whatsoever.

I had to come home earlier than usual yesterday for a delivery and Mum made such a drama of it you'd have thought it was the end of the world. I feel awful for saying so but it was lovely being at home and doing what I wanted for once.

I'm a horrible person.

Should I be firmer and tell her she's more than capable of coping? She is, that's the sad thing, she just tells herself she can't. I've tried persuading her to join stuff but she doesn't want to go to things which are full of old people [she's 81 herself] so I'm struggling majorly.

 

[Bunpoots]

Hi. I agree you can't allow your mother to take over your entire life.
I'm sure she's not doing these things on purpose. One of the first things I noticed with my parents when they started to show signs of dementia was a loss of confidence and a reluctance to do anything unsupported. Like you I tried to provide that support and, like you I had a brother an sister who left me to deal with it all. Very annoying and exhausting!!

In the early days I did manage to persuade my dad to go to social groups and I wish I'd persevered. I wonder if you could sell the idea of the daycentres needing your mum's help, rather than her being one of the old people. It's worth phoning round any you think she would enjoy and see if they'd go along with this story. I know it's worked for others on TP.

I found my dad a "friend who needed a job" to help with cleaning, gardening and taking to appointments I couldn't manage (really a home help). Care agencies offer the services too but obviously expensive if your mum's self-funding.

Now is the time to start getting help. Good luck!!

 

[canary]

Im so sorry that you are finding yourself doing far far more than you want to do.
It sounds to me as though your mum is losing abilities. Not checking dates on food, shadowing (constantly following someone around) and refusing to go to activities are all very common dementia behaviour. Changing an appointment is a very complex activity. I have to ask - how do you know that your mum is capable of doing it? Just because she could do it a few months ago doesnt necessarily mean that she still can. This is a difficult stage - when they still want everything done the way they are used to, but their abilities are declining and they need (and demand!!) constant help. It all seems to feel as though it is spiraling out of control

Ignore the Phantom Sister - we have all discovered invisible family members. You wont be able to persuade them to take on any more responsibility and it will just frustrate you and cause extra stress. Put your efforts into getting your mum diagnosed and decide now what you can and (more importantly) what you cannot do for your mum.

 

[Duggies-girl]

Yes I agree with @Bunpoots and @canary you can easily get dragged into far more than you would have dreamed of. What you describe was me a few years ago. Slowly but surely I have found that my life now revolves around dad.

Visits at first every few days then every day and now twice a day with frequent sleepovers and you are heading the same way. I have had four days off in a year. Obviously I don't work anymore so I don't earn any money either.

You have to get things sorted now or you will become me. Get her diagnosed and get some help.

Your sister will happily sit back and let you do everything.

 

[try again]

I"m almost in the same situation though not going as often as you. I go routinely on Wed and sat as I thought it would be easier for her to remember but it doesn't seem to. Then there are appointments and call outs when the tv "breaks' or the phone is not answered. At least she can't switch the phone off ! I try to phone most days just to check she is ok and hasn't fallen. I do have a sister who visits occasionally who doesn't seem to think to phone. I appreciate she lives a distance etcc but wish she would ring as well.
I have stayed sometimes for medical reasons. I too am not prepared to use what I have left of my life looking after her so that she 'can have her independence"

 

[Norfolk Cherry]

@NIK51 Please don't see yourself as a horrible person for having these feelings. Some people are able to give over their lives, but it's not for everyone. You are doing your best in an impossible situation. If we all lived in large extended families and were surrounded by strong supportive communities, then this level of care would be possible, but instead we are atomised, trying to work to pay the mortgage, and overstretched. I found the stage you are going through was very difficult with mum. Every day there was a new problem or something I had to get for her. She was 75 when it really started, now she's 81 and refusing to eat unless I eat with her. For some reason this is a step too far. I shop, prepare food, have carers to prompt, visit daily, but can't bare to eat my meal with her every day? I ended up holidaying alone so my husband could eat with her, and I feel resentful, frustrated and just don't want to see her. I am going to have to get some more help, and agree with the others, you need to do the same.

 

[NIK51]

Hi,
Thank you for your advice and suggestions. Mum is quite able to make a phone call to arrange or cancel an appointment. In some respects she's very competent. She makes shopping lists and trots round the shops, has been happily occupied tidying and what not it just seems that she lacks motivation without massive encouragement or reminders. She will manage if it's something she wants to do otherwise it's a real struggle. It's almost like practiced incompetence if that doesn't sound a completely horrible thing to say. The more she throws up her hands and says 'I can't' the more she can depend on my help. It's a really puzzling thing.

I did wonder about persuading her to volunteer at our hospital - I work there myself so it might be something she'd consider. It is possible, of course, that dementia isn't what is causing the problem but until we get a diagnosis it's an uphill struggle. I want to support her of course, I wouldn't think of doing else but I'm struggling without any backup which is hard. My phantom sibling has always been a lazy mare and that hasn't changed but it is frustrating.

 

[Malalie]

Hello NK
I'm sorry that you are going through such a hard time. You are obviously a very caring daughter.

The things you have written about your Mum don't really ring a bell with me about symptoms of dementia to be honest. Maybe an old lady that just wants a bit more attention, or is suffering from depression. Does she have a diagnosis yet?

I think if you could plead with her that her help is desperately needed at the hospital ? Brilliant idea - I hope she will go along with it. xx