Struggling to cope

[Louhelp1234]

Sorry for such a long and desperate rant but need to get everything off my chest and desperate for advice/reassurance.

Only child mum 67 lives alone.

My mums always been anxious and a worrier but about 2 years ago she had health scare irregular heartbeat and she also lost her two pets suddenly.
She was devastated almost instantly had memory problems confusion with the time.
She even thought my teenage son had put the number 12 in her clocks as they weren't there before.
Long story short she had memory tests done failed them had ct scan didn't show anything.
Consultant prescribed sertroline said mum was anxious depressed and it was creating a pseudo dementia. Symptoms of dementia but with out the dementia.
Almost straight away mum improved she carried on with the tablets for a year and was fine no real issues no memory concerns.
She came off tablets in March do to dr advice and wa fine at first.
Bout July time mum started becoming withdrawn and struggled with the day to day tasks. Couldn't work her tv. Couldn't understand why cordless telephone has to be connected to electro to charge up.
Was constantly phoning me just random things what time was it etc.
Took her back to Drs they put her back on to sertroline. This time no improvement in fact she seemed to get worse.
My cousin who's a nurse stayed with her for a week in the summer and was very concerned.
Mum was hardly eating she's lost so much weight. She was always on edge worrying and when she got worked up would either rock backwards and forwards or tap her leg. She was just really withdrawn and fidgety.
She got confused with her tablets took two in one day. She'd been in her room and thought it was the next day so took the next days tablets.
Took her back to gp they referred her to psychiatric nurse.
She came sorted blister packs for mum to help her take her tablets. Didn't help she still gets confused took a whole weeks worth in 3 days once.
I now have to phone her every day to feel her to take her tablets.
She's decided she takes them in a morning she starts phoning from 6 every day to see if it's time to take her tablet.
Sometimes she knows what day it is sometimes she doesn't.
The other day I went round when she had to have her tablet she just looked blank and said what do I have to do do I swallow the tablet she had no understanding of it.
She's not coping with looking after the house it's totally out of control. I went and de cluttered but she still can't maintain it.
Had to tell her the other day to get changed her clothes were filthy. She'd had the same jumper on on the Saturday it was now Wednesday.
Have to constantly check her food came back of holiday beginning of September she was still using milk and bread that went out of date 26th September. Had no idea it was out of date.
We have no normal conversations it's all about her illness or her worrying about things.
She struggles to use day to day things. Ovens broke it's not.
Washer doesn't work it does
Tv sometimes doesn't work
Microwave sometimes doesn't work
She has no understanding that it's her that isn't able to work the things she thinks they are broke.
Only equipment she can use is telephone she's constantly phoning me and her older sister.
She got confused the other week she was taking about her niece she hasn't got a niece it was her sister.
She lost her bank card couldn't remember what happened to it. Luckily I managed to cancel it.
She had memory test only scored 50 out of 100.
She thought we were in the year 2027.
She switched freezer off and on repeatedly even though it has food in didn't realise she needed it plugged in.
Every day to day task seems challenging at times for her.
However sometimes she's fine remembers for example Wednesday is shopping day Thursday she goes to her friends etc.
Today she totally stumped me couldn't remember she had a green bin that rubbish had to go in. Told me she's been cleaning up all day. She hasn't the house was a stare. Totally spaced out.
But then said oh I'm having my hair done today. To be honest I'd wrote it on her calendar ages ago and forgot I'd done it so hadn't reminded her but she's worked it out for herself.
She's had brain scan 15th September we get results on Monday 2nd October.
Psychiatric nurse says she expects it to confirm either althziemers or vascular dementia.

I'm totally heartbroken.
I feel like I'm grieving my mum we used to be so close now we are so distant shes unrecognisable.
Yet I'm having to deal with this stranger living in my mums house. She doesn't even look like my mum she's lost so much weight.
She's so lonely and scared.

I do what I can I phone her ever day and see her twice a week.
I can't do more.
I run my own business and work long hours 6 days a week.
Have my own house problems two teenagers etc. Have no time for myself already.
So even though I know I should do more I can't and to be honest I don't want to.
I find it too hard and too heartbreaking I have dread when I know i have to see this stranger I know that sounds harsh.
On top of this in search of answers doing far too much google time.
Have convinced myself that she'll have one of the hereditary dementias like frontemporal.
Don't know why she's not showing any of the real symptoms listed.
My Aunty has given me a full account of family history there is no dementia in our large family.
So I know that realistically If it is even something like frontemporal dementia the chances of it being inherited are supposed to be low but I'm still terrified.
Especially as I'm 46 I feel like I'm a sitting duck.
My mum the worry work worries and all other day to day worries are putting so much pressure on me.
I feel so sad so alone like there's no end to it all.
Every morning I have sense of dread and despair.
My daughter 18 bless her has said she's worried about me as I always seem sad and she feels like she'll loose her mum as well as her gran.
So I know I need to sort myself out but I'm so scared and afraid of what's going to happen.

 

[canary]

(((((hugs))))) louhelp.
A diagnosis of dementia in someone you love can be overwhelming and it is often a steep learning curve. Get there one day at a time and make sure you look after yourself too. Most dementia is not hereditary - not even Frontotemporal Dementia (and what you have described doesnt sound a bit like FTD), so if there is no-one in your mums family who had dementia then I think it extremely unlikely that she has a hereditary type.

You sound very depressed - perhaps a trip to the GP about yourself might help?

 

[Louhelp1234]

@Louhelp1234, your poor Mum, she does sound as though she is suffering from some sort of extreme anxiety and depression which quite possibly can cause all of the symptoms she is demonstrating. Unfortunately, I know little about this other than when it is as a direct result of dementia and then I only know what I have learned from experience. However, I couldn't read your post and not respond because you sound so eaten up with anxiety yourself and are obviously desperately worried about your Mum. Have you tried going back to your Mum's GP or the mental health team and asking for more detailed information about your Mum's state of health and what you can possibly expect? I know it is difficult to obtain information from professionals unless you have Power of Attorney or at the very least, your Mum's permission, to discuss her medical issues. Perhaps if you approach the GP yourself (and even print off a copy of what you have written here, to take with you), they will be able to explain and help you understand exactly what is wrong with her and what can be done to ensure that she receives any help she needs whilst in this very vulnerable state. If you feel that she is at risk in any way you can phone Adult Services yourself and ask for her to be assessed also. I hope the blood test results will help you know more, even if as I suspect, you are dreading the results.

Thanks so much for taking the time and trouble to reply.
Hopefully on Monday we'll get answers somehow.
The psychiatric nurse is useless you can tell to her it's just another diagnosis.
I wrote four page letter middle of August describing mums symptoms asked the psychiatric nurse to read and pass on to the consultant etc and get back in touch as yet no reply.
My Aunty is coming on Monday with me and we determined to try and get some answers.
Think I'm going to call social services next week and get them to assess her coping at home to help her live at home safely.
Mum will hate me for it but I'd rather that and know she's safe eating taking tablets properly etc etc.
The worry of what she's doing takes its toll so there needs to be some help.
Thanks again.

 

[Louhelp1234]

(((((hugs))))) louhelp.
A diagnosis of dementia in someone you love can be overwhelming and it is often a steep learning curve. Get there one day at a time and make sure you look after yourself too. Most dementia is not hereditary - not even Frontotemporal Dementia (and what you have described doesnt sound a bit like FTD), so if there is no-one in your mums family who had dementia then I think it extremely unlikely that she has a hereditary type.

You sound very depressed - perhaps a trip to the GP about yourself might help?

Thanks so much for taking the time and trouble to reply also for the much needed hugs.
Especially the reassurance which was much needed.
Yes the post does sound really anxious and desperate. Strangely enough I feel so much calmer getting all the thoughts that were spinning round my head out. If that makes sense.
Been really tough week with other things too so think everything has took its toll.
Me and mum used to be so close think I'm mourning that too.
Had stressful conversation from mums sister yesterday phoned me up in denial doesn't even regularly visit mum so how she knows I've no idea.
Luckily have amazing hubby two teenage kids, mums older sister and handful of really close friends that are helping me through.
Your right though do seem really down hopefully on Monday will get some answers and that will help my mood if not think I'll have to go Drs.
As strange as it sounds though talking on here has helped already.
Thanks again xxx

 

[canary]

Im glad that talking on here has helped, I think that writing it all down often does. Come and post as often as you want.

Me and mum used to be so close think I'm mourning that too.

Yes, there is such a thing as anticipatory grief and you may well have this.
Sorry your sister is in denial, but Im afraid that its something that we see quite often on here. Glad you have support from family and friends.
xx

 

[Louhelp1234]

Im glad that talking on here has helped, I think that writing it all down often does. Come and post as often as you want.

Yes, there is such a thing as anticipatory grief and you may well have this.
Sorry your sister is in denial, but Im afraid that its something that we see quite often on here. Glad you have support from family and friends.
xx

Yes thanks so much it really did help strangely I feel calmer tonight than I have for months. Nothing has changed just speaking on here and getting lovely words of encouragement.
It seems easier in a way speaking to strangers if that makes sense.
Yes I'm really lucky to have such a good support network.
Yes I can imagine that there's a lot of people that act like my mums younger sister I understand she's finding it hard but so is everyone.
Mums older sister has really stepped up to the mark offering practical and emotional support.
Hopefully on Monday we'll get some sort of answers and try and make sure mum gets the care and help she needs to help her live as safe and happy as she can in her own home.
Think once the waiting is over and I'm doing something even though I can't be mums carer knowing I can do what I can to make sure she's getting care from someone should help.
Does sound like I could have anticipatory grief never heard of that before. Mind you it's all new to me.
Thanks again means a lot xxx

 

[Louhelp1234]

I've actually got through a whole day without a single tear. Not been able to do that since end of August so quite an achievement.
Don't get me wrong I'm still worried about my mum and want her to get the best possible care but trying to see things differently.
Had long discussion with my daughter yesterday she's really worried about how I'm coping. She says she feels like she's losing her mum as well as her gran.
Also typing everything out on here is s tremendous help.
So have decided something needs to change.
Hopefully everything to wo on Monday we'll get some answers from the psychiatric nurse. If she's not helpful I'll go over her head to find someone to give answers. To her my mum may just be another diagnosis but she's my mum. This illness whatever it is is affecting not just mums life but also mine and my little family.
I'm also going to contact social services to assess eewhat help mum needs. I can't see her every day but I also don't want to be worrying has she eaten today has she took her tablet is she safe etc.
Mum needs help more help than I can give
The guilt will have to go. Fact is I have to work I have my own family to look after I'm already run ragid taking on more would not only be impossible but have devastating effect on my health
One thing confused me though. Mum been confused for ages n

 

[Louhelp1234]

Mum been confused for ages not been able to organise anything without maximum fuss.
Yet managed yesterday to go to hairdresser get her hair done. Only reminder she had was it

 

[Louhelp1234]

It was written on the calendar same calendar she didn't know she had or what it was for the other week.
Does that seem strange ?
Sorry for break in posts phone playing up xxx

 

[canary]

No, that doesnt sound in the slightest bit strange.
We get used to weird things that dont make any sense and are well adept at saying uh-huh, really? and well,well at all the strange things that happen

 

[Louhelp1234]

No, that doesnt sound in the slightest bit strange.
We get used to weird things that dont make any sense and are well adept at saying uh-huh, really? and well,well at all the strange things that happen

Thanks so much for taking the trouble to reply, think I have a lot to learn. Must say you're pretty amazing despite all what you may have going on, from reading through some of the posts, your are an amazing support link to so many other people. You should be so proud of yourself, . Big hugs and thanks again xxx

 

[Louhelp1234]

Have total sense of dread for tomorrow. Meeting with psychiatric nurse who should be diagnosing mum.
Bless her I don't think she's even rembered I expected her to be worried but she hasn't mentioned it.
Have just had 10 minute conversation with her that it's night time and not morning time. I still think she thinks it's morning and that I've got it wrong.
Just pray I'm strong enough to cope with what's in store feeling very apprehensive .

 

[HillyBilly]

Wishing you all the best for tomorrow.
If you're able, it might be beneficial to speak with the nurse without your Mum being present. That way you will be able to tell her what you've observed/experienced but without your Mum being able to hear/deny/get upset about. Or write notes to give the nurse to read beforehand.

 

[Louhelp1234]

Wishing you all the best for tomorrow.
If you're able, it might be beneficial to speak with the nurse without your Mum being present. That way you will be able to tell her what you've observed/experienced but without your Mum being able to hear/v/get upset about. Or write notes to give the nurse to read beforehand.

Thanks ever so much means a lot. Yes I'll try to be honest the psychiatric nurse isn't really that supportive you can tell as far as she's concerned it's just another diagnosis. I wrote her a four page letter about mums symptoms she didn't even acknowledge it. Hopefully she'll be better tomorrow.
Thanks again x

 

[canary]

You may find it all goes over your mums head; it certainly did with mine.
She spent the whole time flirting with the doctor . When the doctor said that it was Alzheimers I gasped, but mum didnt bat an eyelid. We went for coffee afterwards and mum had no idea that she had just been diagnosed. I never mentioned it to her again.
Hillybillys advice about writing some notes for the nurse expressing your concern is a good one. I always do this with OH as he is more aware.

 

[Louhelp1234]

You may find it all goes over your mums head; it certainly did with mine.
She spent the whole time flirting with the doctor . When the doctor said that it was Alzheimers I gasped, but mum didnt bat an eyelid. We went for coffee afterwards and mum had no idea that she had just been diagnosed. I never mentioned it to her again.
Hillybillys advice about writing some notes for the nurse expressing your concern is a good one. I always do this with OH as he is more aware.

Thx Canary bless your mum in a way I hope that's how mine will be if she gets diagnosed tomorrow can't bear to think of how shocked worried she'll be if she understands.
Yes it is excellent advice from hilly billy. I will try to hopefully she's more help than she was last time the nurse that is .
Thanks again hope you doing ok xxx

 

[Louhelp1234]

Just got back from meeting with psychiatric nurse.

Mums ct scan didn't show shrinkage.

Psychiatric nurse spoke to consultant.
Consultant says judging by the low addenbrokes score 50/100.
And history of memory problems that psychiatric nurse reported the consultant thinks it will most probably be althziemers but mum has to see consultant but can't see her till January.
Is this normal

 

[Batsue]

It was nearly four months between mum having the tests and scan to seeing the consultant, I think this is quite normal.

 

[Louhelp1234]

It was nearly four months between mum having the tests and scan to seeing the consultant, I think this is quite normal.

Thanks Sue
Is it normal for the ct to not show up but still presume althziemers do you know sorry.
Sorry to hear bout your mum too. Four months is a long time isn't it think the not knowing is the worst Xx

 

[canary]

The CT scan often doesnt show problems in the early stage.
Sometimes it can take a while for a diagnosis.