What should I say?

[betsie]

Really not sure how to handle my mums latest obsession.

She is currently obsessed that something has happened to me. If I am not at her house when she expects me to be (in her head not the time I've told her) or at home when she calls ( she thinks the answer machine is me and I'm putting down the phone) she thinks I have had a car crash. This was Friday, Saturday and Sunday ( had carers and the owner of her local shop calling me as she was crying that I was hurt). I had seen her for several hours on all three days as well.

Now she is convinced she has benn sacked. She is 86 soon and worked as a nurse into her 7o's. She now thinks she has no money ( as she has been sacked) and can't leave the house as people will see her and know she has been sacked. I went through it all with her yesterday and showed her bank accounts, pensions etc ( she said she had never had a bank account) and said she was retired like every other person of her age. She seemed happy with that but this morning we are back to square one. She also said she hasn't slept for the last two nights with worry and is looking out of the window all night ( she lives alone in a bungalow).

Any ideas? Should I just go along with it and say she is not sacked but using up all her holidays? I've phoned the carehome I hope her to go into to see if they do day sessions. I thought I could tell her it is her job ( she worked in a nursing home ) and also get her used to the home. She goes to an Age concern club once a week and thinks that's work.

I am really starting to struggle again. I seem to spend most of my car journeys in tears. I hate dementia and Alzheimer's it has taken over my life as well as destroying my mum and dads. I feel trapped and all I seem to do is moan. I can't be bothered to go out with friends etc as I have nothing to talk about other then dementia. I feel guilty all the time as I spend too much time wishing it was all over. I know there are others a lot worse off than me and I Really don't know how they keep going. See I'm moaning again.

 

[CJinUSA]

Really not sure how to handle my mums latest obsession.

Any ideas? Should I just go along with it and say she is not sacked but using up all her holidays? I've phoned the carehome I hope her to go into to see if they do day sessions. I thought I could tell her it is her job ( she worked in a nursing home ) and also get her used to the home. She goes to an Age concern club once a week and thinks that's work.

I am really starting to struggle again. I seem to spend most of my car journeys in tears. I hate dementia and Alzheimer's it has taken over my life as well as destroying my mum and dads. I feel trapped and all I seem to do is moan. I can't be bothered to go out with friends etc as I have nothing to talk about other then dementia. I feel guilty all the time as I spend too much time wishing it was all over. I know there are others a lot worse off than me and I Really don't know how they keep going. See I'm moaning again.

I'm sorry. It sounds like she is worrying about being the way she is. When my mother gets restless with worry like this, I try to go along with it for a bit, and then I sit by her side or in front of her with my face near her face, and I hug her, and I say Mom, I don't know why you are worrying so. You are safe here, and I'm here to take care of you.

Your situation of course is different - you are away from her, and you have to go see her again. Do you have or does she have a friend who could call round to see her on a daily basis? Do you notice whether these things begin to occur toward sundown? That is, might this be a version of sundowning?

I don't really have any suggestions except that compassionate listening seems to be the thing that works here. Sometimes I don't have it in me to handle this, so I have to ask OH to take over, and she calms down much better for him than for me.

Getting her into a home or else bringing her to your home seems to be the way things are tending for you. I hope she resolves soon, without need for sedation. Btw, have you considered whether this might be a UTI?

 

[CeliaThePoet]

Betsie, my sympathies. I've been going through the same thing with my 86 year old mother. Since early December, she'd held the belief that I'm either dead or homeless and broke. Sometimes, I've absconded to Africa with all our money. I have no idea how she built these ideas, nor what to do to dissuade her.

I especially relate to this:

I feel guilty all the time as I spend too much time wishing it was all over. I know there are others a lot worse off than me and I Really don't know how they keep going

My mother is continent, mobile (though slow), she can speak (though that's sliding, and she feels she can't hold conversations with others), her health is ok, no pain. I, too, think all the time about dementia and how long she will last and in what condition and I long for the day this situation is over.

Not much advice, but I did decide recently that since I cannot control any of the above, I'm going to try to remind myself to have "dementia-free" moments every day. Sometimes I actively seek them, sometimes I congratulate myself on having had an hour without thinking about it, or reading message boards like these as if they could tell me the answer I seek ("when is this going to be over and how much worse will it get before then; and will I ever be the same, after.) [Obviously, I get a lot out of this board but I know my obsessive reading is about something else.]

Keep posting, and try to create some space in your own mind for your own self and hope.

 

[Katrine]

... reading message boards like these as if they could tell me the answer I seek ("when is this going to be over and how much worse will it get before ten; and will I ever be the same, after.) [Obviously, I get a lot out of this board but I know my obsessive reading is about something else.]

Celia, you've described something I was not able to put into words, but I understand so much better now you've written that.

Betsie, your mum sounds very like my MIL towards the end of the time when she lived alone. It must be terrifying when you lose all sense of time. Building catastrophe scenarios is a dementia logical way of explaining why someone you are close to has stopped visiting, or is not answering their phone. Combine this with a constant level of stress and anxiety about staying in control, and understanding what's going on around you. Feeling that you 'ought' to be doing something else, like going to work (which was an environment where you used to be confident and sure of what you were doing). CJ's post shows that, probably, your mum also needs not to be living alone now.

 

[Babydoll]

How to answer

Mom broke hip, had surgery and now in nursing home long term. Lived alone until this now has progressed to someone not my mom. Will not eat,antisocial, says mean things,thinks people are trying to kill her, accused me of taking her money, which is funny as I just applied to Medicaid for her, says she hates me and not to come back. Down to 80 lbs and no feeding tube, has a no resuscitation in place. When I visit, 2 times daily, she is depressed, wants to die, hates everyone there and says mean things. I am so drained as I am only child. Trying to clean out her apt. That's very hard too both emotionally and physically. Just had to vent. I also had 3 cancer surgeries since July with possible more to come.

 

[marionq]

What can anyone say to a relative whose brain no longer works properly. Last night we had a horrendous hour when John wanted to go and collect his sister from the airport, the train, the bus station.

If he walked a hundred yards from our front door he could not find his way back so I had to be very restistant to these delusions. Finally I phoned the manager of her sheltered housing who assured John that his sister was playing Bingo in the communal room at that moment. It took a little while and he was reluctant To believe it but eventually calmed down and went to bed.

I don't want to play prison guard or strict parent to my husband but I am at a loss as to what we do in these highly charged situations. It is all so heartbreaking.

 

[Amy in the US]

Betsie, I'm sorry to hear about the situation with your mum. All of these delusions/obsessions/confabulations are so hard to handle but the distressing ones are the worst. My mother (73, Alzheimer's and no short term memory) has a recurring delusion that a particular family member has died and we have to go to the funeral. It's heartbreaking.

I wish I had some ideas for you but can only offer suggestions I've read here on TP, as I've not had this exact issue to deal with.

Could you have a dedicated mobile or landline with voicemail, just for your mother to ring, with a recorded message that says, "Hi, Mum, I'm fine, I'm on another call right now but I will call you back soon, see you soon!" or something to that effect--so she could hear your voice, a reassuring message, and that she will hear from you/see you soon? (With my mother, I never say, see you tomorrow or see you Sunday, as she muddles time and gets upset, I just say, see you soon, but of course your situation may be different.)

The "I've been sacked" scenario is a difficult one. My only thought is to arrange for her to go to day care or a carers cafe or a day session at a care home a few days a week, and tell her, this is your new job! I would think day care would go along with it and could give her something to do, washing up or a clipboard to make notes for "rounds on the patients" or maybe stuffing envelopes or something. Oh, wait, I see you've thought of that. My apologies for not reading your post properly. I have heard plenty of stories of care homes and day care going along with the "work" situation.

Otherwise, and this would have to be on a day-to-day basis, you could say, oh goodness, I forgot to tell you, work phoned and they've had a power cut so they don't want you to come in today, or the boiler has gone, or they overstaffed that day, or she is using a holiday, or anything you think she'd accept. (My mother responds well when I blame things that she can't remember, on MY faulty memory. So if she says she doesn't remember we were going out to lunch that day, I immediately say, oh! I completely forgot to tell you! I am so sorry, my memory is terrible. Well, I'm here, shall we go to lunch? And she accepts that. Again, your situation may vary.)

My only other suggestion is that perhaps the time has come where your mum needs 24/7 company, or at least to have her care package increased. I will leave it to others to discuss getting an assessment and how often carers can come in and all that sort of thing, but maybe she has just gotten to the stage where she needs more company.

Please don't think you're doing nothing but moaning. I don't hear any complaining, I just hear concern and distress and tiredness and a lot of being upset. You don't ever need to feel guilty about off-loading here on TP, that is what it is for.

And I agree with you completely about dementia (Alzheimer's or whatever). It's a horrible, terrible disease and it destroys not only the life of the person with dementia, but the lives of others who are only trying to care for that person as well. Try to remember this is not a competition about who has it the hardest, that we are all struggling and working hard as carers and it's incredibly difficult.

Don't hesitate to call the Alzheimer's Society or Age UK if you need information, advice, or just a friendly voice on the phone. And don't hesitate to post here.

Best wishes to you.

 

[betsie]

It does help to know I'm not alone.
Mum has a carer for an hour every evening to do her tea and give her a bit of company and at the weekends they go for an extra hour at lunchtime. A friend goes Monday and Tuesday late morning for an hour. My two sisters visit one afternoon each a week (sometimes she goes to one for the weekend). I'm there every day , always first thing then sometimes back late afternoon ( I'm probably there about 15 hours a week). So she does have quite a lot of company and visitors.
Last Friday She was only on her own for just over an hour from 4-5 in the afternoon ( from 8.30 in the morning) and it was in this short time she decided I had been hurt.
Re the phone my husband is self employed so I can't change the answerphone message. She has my mobile number so maybe I will just rub out the home number as the only time I can't answer the mobile is when I'm at work.

My sister was there this afternoon and when I visited later she didn't mention being sacked and was much Perrier. She is always much happier with them, I seem to bring the worse out in her.
A current problem is that she used to have my dog 3 mornings a week while I work but she nearly got him run over before Xmas so I don't leave him now ( I just say my son is at home and likes the dog to be there) she asks every morning why I haven't brought him ( I thought she would have forgotten by now it's been 6 weeks) I do take him to see her every day but she wants me to leave him on his own. I know it upsets her but I can't risk my dogs safety he is like my baby.

 

[Amy in the US]

Betsie, I am glad that even if our suggestions might not work for you, that at least you feel in good company here.

Perhaps try just the mobile and see how that works? Or get a second home phone line just for your mother? You may just have to do trial and error and see what works, or the issue may disappear before you can address it. It's tricky to know.

I am sure it was discouraging and distressing for you, when your mum decided you were "dead" or "injured" after being left alone for only an hour. I hope you understand that it is not a failing on your part as a carer/daughter, but rather a fault of the disease.

There are some people with dementia who need constant company and reassurance, to the point of needing someone within line-of-sight at all times. See this factsheet, under "trailing and checking:" https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=159

That's not a lot of help, but it's a start. I also remember a brief recent thread on this: http://forum.alzheimers.org.uk/showthread.php?87474-Mom-thinks-I-am-dead

I'm sorry I just don't have more practical advice to offer.