Need advice urgently

[Madhouse]

My mum hasn't been diagnosed with dementia yet but is waiting for an appointment with the memory clinic. She is 80 and housebound due to arthritis and other health problems and can only walk a few feet. She has carers 4 times a day, and meals on wheels. It is happening more and more frequently that she rings me up usually in the evenings crying because she doesn't know where she is or how to get 'home'. Even though I know she is sitting in her armchair in front of the Tv! Sometimes she says she's in Australia, today she was upset because she was on a 'beach' and wanted to go home. Yesterday I tried for 1/2 an hour to convince her she was in her own home where she had lived for nearly 50 years but she kept saying 'how do you know' and 'why didn't you tell me'. She is in absolute torment, complaining about being lonely and that no-one visits (although someone is popping in every 3 hours through the day), she can't cope with being 'alone'. I feel I can't help her at all when she rings. She just cries and usually hangs up on me even though I'm really patient with her. Would it be wrong if I stopped answering the phone to her? I can tell when it is her ringing me and am getting a fear of the phone going because it leaves me feeling upset. Often the next day she won't remember what happened and doesn't want to feel like that. I've told plenty of people what she is like but no-one wants to help. I wish I didn't love her so much, then it wouldnt be so painful.

[choccy]

I've been in your position. Sometimes my Dad would call me every 7 or 8 minutes needing confirmation of where he was, sometimes even who he was. It was terribly draining but I just had to answer, I couldn't stand the thought of him feeling lost and confused.

This continued till he went to hospital for assessment and only then finished when I took away his mobile phone.
Now at the care home, I call him every day at 12.30. I don't get that awful feeling of dread anymore when the phone rings.

I don't have any answers for you, you can't take away your mum's telephone if she lives alone.
Perhaps it may be time to consider increasing mum's care, she sounds very similar to Dad with her need for constant reassurance.
I don't want to sound dramatic or worry you but it was during this phone call phase that my Dad became his most vulnerable and if he didn't get the reassurance he needed from me he would go out onto the street asking for help. Fortunately for him he was rescued by an off duty care worker and not an undesirable character, he was admitted for assessment 24 hours later.

I hope someone comes along with some practical help for you.
I just know how it feels x

[hashkey]

Hi,
It is very difficult and frustrating when dealing with a family member with dementia on the 'phone, I know - I have had some experience of it - sometimes it is terrifying! However, in reply to your question about not answering the phone, may I suggest that if you have been speaking to your mum and she phones again within a couple of minutes that you could turn down the ringer and then phone her back in a few minutes - this will or may allow you to have a chance to compose yourself (although I do take your point that you are very patient with her and it is her that gets frustrated) but if you telephone her the conversation may go easier (again although I have had that experience it may not be the same for someone else).And sometimes it is ok to not try and get her to know the day and date but to just reassure her in broader terms that she is allowed to be where she is and it will just be for a short while. Reassurance is very helpful in my experience.
The most obvious risk with not answering the phone to her is that she may actually need assistance however if you phone her back soon after the potential for harm is much less.
In terms of medication - obviously something to take up with her doctor to see if anything can be improved on and
Care - is it feasible to consider full time nursing care?
Given her other health issues this may be difficult (and something almost everyone feels enormously guilty about) however if it means she will be getting 24/7 care it can only be a good thing.
I hope this is of some help.

[Christin]

Hello Madhouse, I am sorry to read about your mum, it is good that she will be assessed very soon. If you feel she needs an appointment more urgently, in my own opinion, I don't think its wrong to chase this up. You could also contact her GP to explain your concerns. Many people also keep a diary of their concerns and relative's unusual behaviour.

With regard to your mum being confused about where she is, I wonder if prehaps she is confusing programmes on the TV with reality. This is something we experienced and something I have read about on TP.

I am popping the link here for Community Care Assessments, please note that you can request a reassessment if you feel your mum's care plan is out of date.

Very best wishes to you both. I hope you are able to get some help for her very soon.

[Chris Edgerton]

Things, issues can suddenly all come a once.

Great advice from Christin about a reassessment, you should contact the social worker as soon as possible to perhaps speed up the issue of memory clinic.

Although may seen a bit heart less with your present issues, you may if you have not done so see about power of attorney, who will look after her finances, health and health wishes. There is no harm in looking at various care homes, if not for now,but in the future.

[tobermory]

Hi
You haven't said how far you are from your mum. I take it you must live quite far as she has carers popping in. I know it's upsetting but you have to do what is best for your mum. Perhaps you should wait for a diagnosis and then speak about care options with the clinic.

best wishes

[lin1]

Hello Madhouse
Im sorry to hear about your mum

I would try n speak to mums gp to see if they can speed up the appt for the memory clinic

Though I cant say for sure
it may be that mum is sundowning, its a period of agitation/confusion that often but not always happens early evening that happens with people who have dementia
During sundowning I found it was impossible to persuade my mum that whatever she was frightened/worried about was not happening and often made mum worse

Im going to put a link to a thread called compassionate communication with the memory impaired, that may give you some ideas , its a tall order to follow it all the time but many of us here found it can help the sufferer

[lin1]

Here it is
http://forum.alzheimers.org.uk/showt...emory-Impaired

As i said it is a tall order to follow it all the time esp when your uptight

wanting to go home and wanting their mum happens a lot with dementia sufferes , with my mum it was because she was distressed/scared and wanted to get back to a place or the person (mum)they will felt safe with

[ggma]

For a number of years our Mum was happy on her own in her own bungalow, she managed well with a routine that she kept to, however once her dementia became more advanced and her thought processes much slower, she found decison making difficult, she lost time of day and frequenly got lost in her home and outside. She became we felt quite depressed and alone, because she could no longer really hold a conversation, and although she was seeing people 3 or 4 times a day, the long h ours in between were very isolating for her.

When we look back we all think we might have done things differently, and I think we perhaps should have considered a care home 6 months earlier. We did try Mum living with us, but she needed 24hr supervision and we could just not manage that around our jobs.

You have such a difficult situation to manage, I do hope you get some more support and a diagnosis very soon. It is not easy to decide when to change things, but at some point the support needed by your Mother will be more than carers calling in 4 times a day can offer.

[Madhouse]

Thank you everyone for your help. Thankfully mum isn't able to go wandering because of her disability which is maybe a blessing in disguise!! I only actually live the other side of town, a 7 minute drive. She has the carers because I work in the mornings and it was also peace of mind knowing if I was away or ill it wouldnt affect her so much, I knew she would still be cared for and it works well.
I do sometimes thinks she gets confused with the Tv because she always rings around the time she has finished watching the Australian soaps hence thinking she is in Australia or on a beach. I think she watches them, falls asleep, wakes up and thinks she is there. Sundowning is interesting, that definitely sounds like my mum.
I will resist looking into care homes for now, at least until she has a diagnosis or something. Her morning carer is so good to her and even checks up that the other carers throughout the day are doing their job properly that I wouldnt want to take that away from mum - who thinks upon her as a 'friend'.
I have an answerphone so if I don't always answer the phone I check to see if she has left a message, then decide if I am strong enough to ring her back. She also has Carecall so I am happy that if she fell etc I would be contacted by them.