Don't know how much more I can take

[nr32]

I only just joined this forum as I don't have anyone I can talk to. My mum's 59 and started having problems 7 years ago with memory and thinking dead relatives were in the house. Initailly she was told its vascular dementia caused a TIA's. 3 years ago she was told it was Alzheimers, and was put on Aricept. She goes to a memory clinic every few months, and they have decided it's not Alzheimers so have taken her off the tablets. Since then she has really deteriorated. She is seeing my dead nan, grandad and uncle, this morning she didn't realise I'm her daughter, and the other night tried going out 3 times in her underwear. I have spoken to her doctor at said clinic who thinks it's just a coincidence that this has happened at the same time as stopping the tablets. We got a referral to a neurovascular consultant who has ordered more scans and has put her on Quetiapine for the hallucinations, but they're still happening. I really don't know how much longer I can do this. I feel like an awful person for feeling like this, but there isn't anyone else. I have no friends or family to turn to. It's getting to the point where I can't stand to be in the house with her. I work nights and am constantly exhausted. I just want to get in my car and run away, or throw myself out a window
Sorry for the long post but really don't know where else to turn

 

[Sue J]

Hi NR32

What a horrible time you and your Mum are both having. Sounds like you've done pretty well so far but now you need a break. Can you ask for a referal for your Mum to a mental health team for support and seek help to get her into respite care so that you can have a break, or through your GP? Sorry if I'm not being very helpful but you will get lots of support here so you have come to the right place.

Others will add their support too I'm sure. Your post wasn't long by the way
Best wishes
Sue

 

[Chemmy]

Hello nr32

Welcome to TP. You do sound very down and no wonder, after reading your story. There are lots of people on this forum who have been a similar position themselves and I'm sure they will be along shortly with some specific advice. You can use this as a place to offload and have a good old rant if that helps - we know how you are feeling and won't be judgmental, whatever you say.

Have you had a chance to look at the Society's factsheets? You don't mention whether or not you have help during the day. It must be really difficult to sleep if you're working nights and your mum is at her most active during the day.

Have you and your mum had a Community Care Assessment? There should be one for your mum and a separate carer's assessment for you.

If at any time you feel is all getting too much and you want to talk to someone, please call the Samaritans 08457 90 90 90.

They are always there to listen, night or day, whatever the problem

 

[sue38]

Hi nr32 and welcome to TP. I'm sorry you and your mum are having such an awful time.

It does sound as though you need more support than you are currently getting. Does your mum have a Social Worker or CPN? Have you had a Community Care Assessment ?

If you are struggling you may think about contacting the Samaritans who provide an emotional listening service. These are their contact details:

Telephone: 08457 90 90 90 (24 hours, seven days a week)

E jo@samaritans.org

W www.samaritans.org

Edited to add: Sorry cross-posted with Chemmy!

 

[lin1]

Hello
Welcome to TP
I am sorry to hear how low you are feeling

sorry to hear about your mum
Also her decline since being taken off Aricept
If you have not told the consultant about this I would do so

Your at the end of your tether arnt you ((((((HUG))))))
I am guessing amongst many other things you are very short on sleep

sorry to say that it is the squeekiest wheel that gets the most oil
your or someone you trust needs to be shouting loudly on your behalf
to Adult social services, mums consultants , cpn, memory clininc

also gp's yours as well as mums

You see i think you need a complete break from mum for a week or two (respite care) at the very least a social worker could help with this

regular respite is what helped keep me going
If you feel its time for full time care for mum then do tell the drs, cpn memeory clinc and social services

do you have any help at all or are you struggling on by yourself

others will be along soon with more advice and support

I like others on TP have found it helps to off load a bit here also just being here among people who know what it can be like

 

[BeckyJan]

Hello and welcome to Talking Point.

I am so sorry you have this to cope with. You have already received good advice.

I also think that as this is seriously affecting your own health, you should see your own GP and stress just how you feel. He/she may then look into what support is available for you - the Community Assessment is where it could lead but a GP report may add some strength to it.

I also suggest you ring the local Alzheimer's Society Branch to see if they have Support Worker or Dementia Advisor to give you some more back up support.

Please keep in touch and let us know how you get on.

 

[Big Effort]

Hallo Nr32,
And welcome to the forum. You are just like me. In fact you are just like many people on this forum. So you took the right step in joining. Whatever you do, just keep posting.

I really don't know how much longer I can do this. I feel like an awful person for feeling like this, but there isn't anyone else. I have no friends or family to turn to. It's getting to the point where I can't stand to be in the house with her. I work nights and am constantly exhausted. I just want to get in my car and run away, or throw myself out a window
Sorry for the long post but really don't know where else to turn

About 2 months ago I could have written the same text. I was at my wit's end. I was alone - how wrong is that? I have learned so much from the wonderful, experienced people on this forum, that I am now a different person.

I have drawn a line. Found a place (care home) for Mum, and they will take her when I am ready. I'm looking for a job..... I am breaking free. Every time I waver, some kind soul here reassures me I am not a selfish daughter.

Obviously this may not be the route for you to take. The great thing is there are many solutions, and on this forum literally dozens of people are facing what you face today. The real problem is feeling alone. You are not alone - but dementia is a lonely, painful business.

What helped me gain a sense of the magnitude of dementia, was reading other people's posts. That opened my eyes. Once the eyes open, I had questions - and I got answers.

Have a nice hot cup of tea. Start to 'graze' through the posts, and post, post, post!
Talk soon, no32. Here is to a new phase, one of walking a difficult path with wise people at your side.

Hugs, BE

 

[nr32]

Thanks everyone. We used to have someone come out once a month from the Memory clinic (I think it was Occupational Health), but because she was fine on the Aricept that stopped. There is no one else, only me. For years she hasn't been able to sleep properly of a night, but sleeps most of the day, so I wake up several times during the night when I hear her up and about. She keeps telling me that it's not my problem and to stop worrying about it. We told the consultant that it's been since stopping the Aricept but they seem to disregard it. She has another 2 nuclear scans next month so hoping something will show up. My life is work and home, except for a couple of hours once a week when I go riding

 

[Chemmy]

You really do need some support.

If you were to get some carers in during the day, would that help? How much is your mother still able to do for herself? Does she need help with dressing, bathing, stuff like that?

 

[nr32]

She can still do everything she used to, it's just the memory side and the "hallucinations", I don't know if she is actually seeing them or just thinks they are there. I have to remind her to have a bath or shower, she can go months in between. She falls asleep a lot in the chair and drops her cigarette. It's more of a night I'm worried, especially when I'm at work, I get her to text me so I know she's ok. The first time all this happened back in 2005 they put it down to a water infection, she used to go out of a night banging on peoples doors, run up a huge phone bill (I was living away at Uni), then got taken to hospital by the police after going shopping in her nightie and stealing a bottle of perfume. She has always said that if it starts interferring with my life she would put herself in a home, but I don't know how much that will cost.

 

[Chemmy]

If she was doing things like that back in 2005, it seems strange that there's been no great physical deterioration in the last seven years. My mum went in to her care home then and the change in her has been HUGE.

Any one else find this rather odd?

 

[Kathphlox]

I agree with Chemmy here.

Dad had Vascular Dementia and he took steps down in his ability over a period of 5 years until at the end he could do absolutely nothing for himself.. he couldn't even wipe his nose.

From what I read on here and elsewhere, Alzheimers is a much slower shallow decline.

If they are saying your Mum has VasD, so they took her off Aricept, I'm thinking what if she has Mixed Dementia, being some of both, the Aricept would still help her.. I think you need to ask some questions about that.

Read as much as you can about the aspects of both diseases then you know what you are talking about when you ask those questions.

But, I really think you need to consider her going into a home, she really isn't safe on her own and needs 24 hour care.

Don't worry about feeling the need to run away, we all feel like that, quite a lot if we are honest

Hugs
Kath

 

[nr32]

Thanks, I have Googled the conditions and done some reading. I just feel I will be judged by everyone if I go down the home route. Friends of mum have already made it clear to me that children should not put their parents in homes and should look after them themselves, although they haven't had to go through this

 

[Chemmy]

Thanks, I have Googled the conditions and done some reading. I just feel I will be judged by everyone if I go down the home route. Friends of mum have already made it clear to me that children should not put their parents in homes and should look after them themselves, although they haven't had to go through this

Oh, those sort of comments make me hopping mad. How dare they? Are they offering you any help or support? If not, they have absolutely no business interfering.

I can assure you, nr32, we are here to support you and will help you come to a decision based on your needs and those of your mum, not the uninformed (I am actually tempted to say ignorant) opinions of others.

 

[nr32]

I just feel really selfish because I'm worried about how much it will cost. Mum has no savings or property and her only income in Income Support and DLA. I don't know if I can afford to pay for home fees.

 

[wonderlander]

Ariscept

Thanks everyone. We used to have someone come out once a month from the Memory clinic (I think it was Occupational Health), but because she was fine on the Aricept that stopped. There is no one else, only me. For years she hasn't been able to sleep properly of a night, but sleeps most of the day, so I wake up several times during the night when I hear her up and about. She keeps telling me that it's not my problem and to stop worrying about it. We told the consultant that it's been since stopping the Aricept but they seem to disregard it. She has another 2 nuclear scans next month so hoping something will show up. My life is work and home, except for a couple of hours once a week when I go riding

I was told by the experts that Ariscept works for Alzeimers but not for vascular dementia. What if she has Alzeimers and the tablets have been stopped! Especially if it was working ... I'm speaking a one whose mothers turnaround was dramatic after being given Aricept. The doctors diagnosed Vascular Dementia first of all It was just lucky that we had another scan and Alzeimers was spotted which explained why it was working. Most people only get one crack at diagnosis Worrying but lucky for us! Just a thought

Regards

 

[tre]

Dear Nr32,
I am sure all this is to do with cuts and them wanting to reduce their drugs budget- at the expense of your mum's health by the sound of it. My mum was diagnosed with Vas Dem but I think she too had mixed. She was on 5mg patches which the consultant stopped because they were irritating her skin. I asked for her to go on the tablets but he said to try without as he doubted the patches were helping. Well, once the patches were stopped she too went downhill at an alarming rate. We shall never know whether this was coincidence or not. I tried to get tablets but the consultant had removed mum from his list. We never did get to try.
Aricept is not amaazingly expensive. I would plead to try three months supply to see if it does improve things if you possibly can.
With love,
Tre

 

[nr32]

Thanks, I just can't see that it is a coincidence. She was on Aricept for 3 years and everything was great, her memory actually improved. Then only a couple of weeks after stopping the tablets she was forgetful, falling asleep all the time, seeing dead relatives and thinking she has to go to work (hasn't worked in 8 years). Her Dr at the Memory clinic has asked me to keep her up to date, so will call her tuesday. She had a CT scan a couple of weeks ago but haven't heard anything, so don't know if that means there's nothing there or that the Dr is waiting for all scans to be done first. She hasn't got to go back to see Consultant until November.

 

[Amy]

Hiya nr32

Just picking up a couple of points that you made

She falls asleep a lot in the chair and drops her cigarette. You can request the fire service to do an assessment. Do you have smoke detectors in place?

I'm worried about how much it will cost. Mum has no savings or property and her only income in Income Support and DLA. I don't know if I can afford to pay for home fees.
It would not be down to you to pay home fees. If your mum is assessed to need care to ensure her safety then if she has no savings the Local Authority would pay. I think the Community Care Assessment is essential.

Amyx

 

[topper2]

Thanks, I have Googled the conditions and done some reading. I just feel I will be judged by everyone if I go down the home route. Friends of mum have already made it clear to me that children should not put their parents in homes and should look after them themselves, although they haven't had to go through this

tell these so called friends to come and look after your mum for a week, they might change their opinion. don,t worry about how you feel i have to sit in another room when my dad gets me down,i also could just get in my car and go away, this is what this terrible disease does to you. forget about anyone else you must put yourself and your mum first. get in touch with social worker and get all the help you can you have many friends on here that understand best of luckx