Newbie

[Nels]

Hi, everyone,

I have been reading the posts on here for a while and have finally got around to registering.

Tonight probably was the final straw. Mum has AD and lives with my sister who has a learning disability. Her agitation reached an enormous high tonight. she insists that she is living in the wrong place, is left on her own all day and night (not true to both). I ended up crying, so did my daughter, hubby went round to try and sort things out as I have not been well over the past few months and have hospital tomorrow so he wanted me to be as calm as possible..... blood pressure through the roof again when I go methinks. She will not listen when we try to explain to her and just shouts. I really feel at the end of my tether, I am going to get the doctor out tomorrow when I am back from the hospital, as I don't know what to do. She is not frightened of burglars etc, just keeps saying that we are keeping her in and leaving her on her own, she does not remember visitors and if my sister goes out to her clubs etc mum phones to say she is all alone and has been for hours, even if it is only half an hour. What is upsetting is that she will not accept that what we are saying is the truth. My sister is getting really distressed and does not now want to live with mum.

Sorry for the rant, if anyone can give me any advice I would be very grateful. Feel that I can't sleep just waiting for the phone to ring with yet another problem.

 

[Lila13]

Good luck with the doctor, hope you can get through to him/her how your mother really is.

Lila

 

[Amy]

Hiya Nels, Welcome to TP. You are doing the right thing; you need to get the GP involved, and get some support with your mum. Has she had a diagnosis, and is she on any medication?
Get yourself sorted out today at the hospital, as your health is paramount, then get help for mum. You need not struggle on alone, there is help available, unfortunately you often have to ask loudly for it, it is not offered.
Ask questions on here, people will have ideas that will help.
Take care.
Love Helen

 

[Rosalind]

My hunch is the authorities don't really volunteer sources of more help until the carer is very evidently getting to breaking point, and it sounds as if you have reached that stage.
Get the GP, Psychiatric Nurse, your sister's social worker if she has one, fully aware that you are getting too stressed out by the whole thing - throw a wobbler if you feel like it, this is no time to be brave and stoical.
And if you can get the hospital to confirm that it is having an adverse effect on your health that would be of assistance.
Good luck

 

[Nels]

Thanks for the replies. Mum has been diagnosed , she has been on 5mg of Aricept for 3 months, went back to the memory clinic last week and they have upped her dose to 10mg. On Monday she was sick whilst taking the tablet, she has problems swallowing some tablets and thinks we are trying to kill her as the tablets are now yellow not white, had the same problem when they changed her warfarin dose and the colours changed then. She had taken the tablets out of her box last night but said no-one was there to tell her to take them so when hubby went round they were on her pillow... he threw them in the bin as he was not sure if she had found them somewhere.... she had not as I only put out a daily dosset box, neither my sister or mum can cope with more than that. I write down where my sister has gone and when she will be back but mum either says she does not understand it or refuses to read it. What I find really strange is that she keeps on about being left alone, this is a woman who for 80 years enjoyed her own company etc I can only put it down to the fact that she does not now know where she is and feels that she is in a strange place (she has lived there for 11 years), moved to be nearer to me after dad died.

Sorry for the ramble. Have had very little sleep.

 

[Margarita]

Phone memories clinic or ask doctor to get the dementia nurse to come around & talk to your sister, as all what your saying is the systems of dementia/AD & you can talk about the medication

My mum was like that & it gets harder as it come a time when your sister won’t be able to leave your mother alone , or if she does your just have to put up with the phone call & your mum lying to you, we see if as lying but to your mum she is not , she is losing sense of time & forgetting took me a long time to learn that .

I ended up living in mum time zone but I know my limits & get respite & mum go to day centre 2 days a week.
In the past when children look after mum while I went out they found it very stress full putting up with what your mum saying to you , itbut they new I was coming back it did pass & mum not so bad now ( it went on for about 2 years )




How old is your sister?

 

[Kayla]

My Mum is in a Nursing Home and if she is on her own when I visit her, she says that she has not seen any one for hours or days, which are I know is untrue because there are staff all around most of the time. Time has no meaning for her and she forgets what has happened recently almost straight away. She has a good friend now and they seem to be in their own little world, having parallel conversations, because they have misheard each other.
It was awful when she was at home on her own, because she told everyone that she never had any visitors, although there would be several people coming in most days and she would ring up at all times of the night or early morning. For some reason, she "didn't like to ask for help" when her cleaner or carer came in and the light bulb needed changing, or some other little job was outstanding. We would get a phone call at an inconvenient time and Mum would put on her pathetic, poor little old lady voice, asking for the job to be done right now. She also refused all offers to fetch items from the shops, saying that "My daughter will do my shopping."
I think that these problems must be part of the illness and declining mental abilities. There are no easy answers, but maybe the SS will offer a care package to help. It does sound as if you are at the end of your tether.
Kayla

 

[Tender Face]

this is no time to be brave and stoical.

A brilliant reminder to us all!! Thanks, Rosalind!

Nels, good luck for tomorrow - especially for YOURSELF. If it helps at all, I must say I just read Kayla's post with a shiver - although my mum is not in a nursing home - everything she said rang so true. You'd think my mum had been abandoned by every friend she'd ever known - I know it's not true - goodness knows what she tells them about me...

I too try to write things down for mum, but don't ever know if she'll throw the note away - not read it (or even can't read it?), forget where I left it,('conspicuously placed' doesn't seem to have any significance anymore)....

It's horrible getting to the point of 'dreading the phone' ringing, isn't it? Can you think of some strategy/script you can use....? Just knowing you have something in mind to deal with it can help (not spilling the beans on my current strategy - people will think I'm just TOO awful!!!!)

I do hope things go well for you ALL tomorrow - it would be good to know how you get on ...

Love, Karen (TF), x

 

[Tender Face]

She has a good friend now and they seem to be in their own little world, having parallel conversations, because they have misheard each other.

Kayla, sometimes someone here paints such a magical picture out of what is such a tragic situation. I hope you don't mind that that actually raised a smile! - most especially that friendships - perhaps by a different defintion - can still be forged.....
Delighted for your mum!

Thanks for sharing that, love, Karen (TF), x

 

[Kayla]

Dear Karen,
My Mum does come out with some amusing things. When I told her that her house had been let out to a family with three children and a little Jack Russell dog she was delighted, but said, "Oh, tell them to change the dog for something else will you? I don't like Jack Russell's, they're too yappy! Only joking!"
It made me smile.
Kayla

 

[Nels]

Thanks for all the support folks. Just a quick update as I am almost falling asleep here. Spoke to the memory clinic today, they have made a referral to SS for me, who phoned this afternoon and will visit in the next day or two, will ring me first, although they did say that if mum refuses to accept help they cannot make her have it. Memory clinic suggested that next time she throws a 'wobbly' ring them as even out of hours they have an emergency CPN number on the answerphone and they will come out. This seems like a good idea as this afternoon mum was all sweetness and light! So anyone coming round today would have thought we were talking absolute rubbish. Will try and put the wheels in motion with SS when they visit. My sister is 48 years old and finds change very difficult but I did have her laughing this afternoon.

Have to say the clinic was great, they could obviously see I was at breaking point and phoned me 3 times today to check that I was ok. Hospital went ok, although they spent 30 minutes trying to find my notes - at the other hospital as I saw the OT last week! Have to up my iron level apparently.

Thanks again.

Nels

 

[Helena]

"mum was all sweetness and light"

Now where have i heard/said that one before

Honestly if they want to AD /dementia patients could sell a fridge to an Eskimo

yet truly their understanding of anything is zero and oh the aggression etc if you dare to challenge them or say you do not understand what on earth they are talking about

Roller Coaster is the best description

 

[Lila13]

Glad they have given you an out of hours number for emergencies.

Hope your mother will accept whatever help SS can offer.

Lila

Thanks for all the support folks. Just a quick update as I am almost falling asleep here. Spoke to the memory clinic today, they have made a referral to SS for me, who phoned this afternoon and will visit in the next day or two, will ring me first, although they did say that if mum refuses to accept help they cannot make her have it. Memory clinic suggested that next time she throws a 'wobbly' ring them as even out of hours they have an emergency CPN number on the answerphone and they will come out. This seems like a good idea as this afternoon mum was all sweetness and light! So anyone coming round today would have thought we were talking absolute rubbish. Will try and put the wheels in motion with SS when they visit. My sister is 48 years old and finds change very difficult but I did have her laughing this afternoon.

Have to say the clinic was great, they could obviously see I was at breaking point and phoned me 3 times today to check that I was ok. Hospital went ok, although they spent 30 minutes trying to find my notes - at the other hospital as I saw the OT last week! Have to up my iron level apparently.

Thanks again.

Nels

 

[Nels]

Quick update folks. Mum had another 'wobbly' on Friday. Phoned SS but they could do nothing that late on a Friday, no emergency respite etc. I will phone again on Monday to try and set up something with them. Managed to persuade her to come and see the doctor with me, late on Friday. When we got in there she was calm and refused to tell him how she felt..... she had probably forgotten anyway. He was not prepared to listen to me, just told me to take her home, said she may have a water infection (no signs of this) as this increases agitation etc and gave me some antibiotics for her. When I read the blurb for these it said they may interfere with her warfarin (I had told him she was on warfarin), so phoned NHS Direct (as surgery now closed) that was an epic in itself. They told me not to give them to her until it could be clarified and put in a message to the out of hours service to call me, am still waiting for them to call! She has been calm since then, now wants some fish so will take them out to buy a tank etc, maybe watching them will relax her.

Was not up to even looking at a computer yesterday, hubby went round there to check all was ok and I slept for 4 hours in the afternoon! Still feel sleepy now though.

 

[Lila13]

It's appalling the way doctors just don't listen and won't believe relatives. I found my mother's doctors only showed a bit of interest in her mental state after several neighbours had phoned to report her wandering outside in her nightie in the rain, etc.

It might be worth trying to get neighbours to phone doctors on your behalf.