struggling to cope

HelenD

Registered User
Jul 2, 2012
6
Hello, I am new to talking point so will keep it short whilst I get used to it. My mum has been diagnosed with Alzheimer's disease and has worsened quite quickly, I am just struggling to cope with the loss and the sadness. A lot of people don't seem to understand and generally the world carries on as usual without much acknowledgement of my mum slowly disappearing. It would be easier if she was happier but it is harder to keep her happy now. I am stuggling to cope with it and to just carry on and go to work and deal with everything else, finding it hard to keep things together. It seems things will only get harder for all of us, so it seems that I will just be sad for years, and that feels too hard to deal with. Sorry for such a bleak first posting, please help. x
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Hello Helen

Welcome to Talking Point. So sorry that you've had to find us here but you are now amongst a group of people who WILL understand - and laugh (yes, it can happen :)) and cry with you along the way.

At the moment you're grieving for the mum you're losing and scared of what lies ahead, so it's no wonder you're so sad.. Whatever your fears or questions, please share them with us and we'll help if we can.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,129
Kent
Hello Helen

You are right, people who haven`t experienced dementia just don`t seem to understand, which is why Talking Point is so important to so many of us.

I know it`s easy to say but try not to look too far ahead. Try to make the most of every day or every moment your mum has a good period. And don`t presume it will get worse. The illness will get worse but it doesn`t mean your mum will remain as unhappy as she is now.

I had a very unhappy time with my husband but now he is more contented than he has been for a long time which makes it so much easier for me.
 

chrisuz

Registered User
May 29, 2012
94
East Yorkshire
I'm glad you found TP, unfortunately the public are usually only aware of the very last stage of the illness and do not see what has come before. Because sufferers can put on a good show for a short time people often don't believe how they are most of the time. What annoys me is that whilst I accept that they don't see it, why don't other people accept that carers aren't liers and that what we are living with is real. Thank goodness here everyone is in the same boat,sadly, and there is real understanding. Stay in touch.
 

Isabella41

Registered User
Feb 20, 2012
904
Northern Ireland
Hi Helen
Welcome to TP. Here you will find a safe place where you are understood. We are all at different points on this horrible journey and have so many experiences that I am sure you will find it a brilliant support. Dementia has been called the long goodbye and it wasn't until it came to my door that I realised the true extent of this statement.

I was told that very often someone with dementia looses the ability to be happy. This is certainly the case with my mum. All you can do is take one day at a time. You'll drive yourself barmy if you try to jump too far ahead.

Isabella
 

ggma

Registered User
Feb 18, 2012
1,130
North Staffordshire
Welcome to TP.

I think the early days are some of the worst, my Mum fought the illness and us for a long time and life was really difficult. Now after over 12 years Mum is quite placid and content living in a care home, and it is easier for us, but the journey has been very difficult.

Do keep posting, people will understand on here, and you are right the wider world is too busy to try and understand what the dementia journey is like, so self help like TP is a great source of comfort
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,824
69
Dundee
Hello and welcome from me too. I know it's hard not to feel sad. Keep coming on TP and you will find masses of support, help and advice. When you feel like it have a look at the Tea Room - many of us go there for a bit of cheering up now and then. It does help to know that everyone on here understands what it's like to live with dementia. Take care. x
 

debbieann

Registered User
Jun 25, 2012
4
61
rochdale
hi i am new to this talking point

Hello, I am new to talking point so will keep it short whilst I get used to it. My mum has been diagnosed with Alzheimer's disease and has worsened quite quickly, I am just struggling to cope with the loss and the sadness. A lot of people don't seem to understand and generally the world carries on as usual without much acknowledgement of my mum slowly disappearing. It would be easier if she was happier but it is harder to keep her happy now. I am stuggling to cope with it and to just carry on and go to work and deal with everything else, finding it hard to keep things together. It seems things will only get harder for all of us, so it seems that I will just be sad for years, and that feels too hard to deal with. Sorry for such a bleak first posting, please help. x
hi i know just how you feel me and my partner have come back from spain after 14 years over there we took his dad out of the care home his daughters put him in ther because thay said thay could not cope with him and thay wanted to live there own lives but now i have been told abought this site we do not feel so alone every body is so nice on hear and if you ever need info on eny thing just post on hear and somebody will no whot to do so please dont feel so sad you are not alone so take care . debbieann
 

CALLYDG

Registered User
Jun 28, 2012
30
Im struggling too

Hi

My dad has recently come to live with us 4 weeks ago after his female partner kicked him out after 10 years. He has been diagnosed with vascular dementia and to be honest, I'm really struggling to cope with his moods, following me round and constantly changing his mind over things is soooo difficult to handle. I feel guilty because of the way I feel.
I totally understand how you feel, as I'm sure thousands of others do too.
If you feel anything like me, I would love a friend to chat to.

It's so hard living with him every day. He has had dementia for a couple of years, but has only been diagnosed 4 weeks ago. He has been kicked out by his lady friend of 10 years, with no reason. We presume it was because of the vascular dementia. He is devastated, as he doesn't know why the relationship ended, the 'lady' in question refuses to talk to him! My husband and I took dad in without question, but it has been a massive struggle to adapt, mainly because it's heartbreaking seeing him like this.
My dad constantly repeats things, asks the same questions over and over and follows us about the house... Bless him! (but it can get irritating). I have also been accused of stealing money (I took him to the bank to draw it out the day before and gave it to him in front of his lady friend). The next day day he could not remember it!
He has several serious health issues too, thankfully he now gets looked after properly by us, which he hadn't been previously.
This last week, dad seems to have gone down hill health wise and mentally, which is frightening. Dads’ breathing is worse, with a phlegmy chest. I wish I knew how long he has left. Seeing him suffer like this is eating me up inside, but I have to remain strong ...for dad ...and me. I love him so much! The only good thing about this situation is that I am getting close to my dad again after many years of just 'visiting a relative'. I know that he will probably end up in a care home, but I want to look after him for as long as possible, even with the problems it brings.


Kind regards
CallyDG
 

counttoten

Registered User
Apr 17, 2012
23
Hello, I am new to talking point so will keep it short whilst I get used to it. My mum has been diagnosed with Alzheimer's disease and has worsened quite quickly, I am just struggling to cope with the loss and the sadness. A lot of people don't seem to understand and generally the world carries on as usual without much acknowledgement of my mum slowly disappearing. It would be easier if she was happier but it is harder to keep her happy now. I am stuggling to cope with it and to just carry on and go to work and deal with everything else, finding it hard to keep things together. It seems things will only get harder for all of us, so it seems that I will just be sad for years, and that feels too hard to deal with. Sorry for such a bleak first posting, please help. x
Hello Helen,
It is very hard when the world generally thinks that you have an 'old dear' or 'dotty' old lady in your life. Until you have a parent with dementia, you don't understand how draining, saddening and (I'm sorry to say) pointless life can sometimes seem. Is there anyone (either professional or friend/ family) who understands how hard it is for you to cope? If not, you should consider putting your feelings down in a letter to your Mum's GP and / or Adult Care Services in your area. Nobody may actually act on this, but it is a start, for when/ if things reach crisis point.
Reading this forum makes me feel that there are people who understand.
My mother is cheerful towards friends and neighbours, her conversation is limited, but they don't always notice. Often with these aquaintances she has enthusiastic stock phrases such as 'you're a lovely, lovely lady.' Her nearest and dearest however, are accused of ruining her life, not 'letting' her do things, being 'bad sons/ daughters' etc. I find it particularly sad when I think I have had a nice chat with my mother and we have got on well, discussed something on the TV etc. However, afterwards she tells my sister that I have behaved unforgivably towards her. And I don't know why! And my mother cannot really remember why! Thats when I feel as if life with dementia can be sad and pointless. My father is my mother's carer (I just turn up for weekends when I can or when I am allowed). He says that she is often loving and appreciative towards him, which is one reason why he is able to keep going and be so caring. She often phones me crying about how awful he is....It seems to be a strange, almost 'two-faced' aspect to those with dementia.
You must not give yourself a hard time for not being able to make your mother happy. Nobody can make her happy. The alzheimers is making her life confusing and frightening, which in turn makes her behabour difficult. However, there are stories and comments on this site from those further down the dementia path saying that life can get easier in some ways as the illness continues.
Don't let your mother's dementia or any misplaced guilt stop you from enjoying what you can and being positive where you can.
L xxxx
 

CALLYDG

Registered User
Jun 28, 2012
30
How are you doing?

Hi Helen,
I know what you are going through, I'm in a similar situation with my dad. He is declining quickly mentally.
I had a big row with dad today. He keeps bursting into tears over Maureen who had kicked him out 6 weeks a go. He said that he wishes he was dead and wouldn't be alive in the morning. I made the mistake of asking him to stop saying things like that because it upsets me. He said, 'So am I'. I tried to explain my feelings and asked if he cared about me, he said 'yes, but I'm entitled to my opinion and if I want to express it, I will'. No matter what I said, his brain just wasn't taking it in. I got really angry and asked for space to calm down, but he kept following me around the house and garden. He then said that I started the row!! I couldn't believe it. Dad then said he would move 60 miles away (were he lived 16 years ago) and would pack his bags tonight, which also upset me. I couldn't calm down with being followed, and I ended saying that if he wanted to kill himself, then do it, get it over with. I felt so guilty afterwards!
I've started to realise tonight, that he has lost his capacity to work out what comments are upsetting, yet he doesn't say things like that in front of my husband!
I feel so stressed now and don't even want to see him. I know this feeling will pass eventually, until the next time!
I really hope things get easier for you as time passes.
CallyDG
 

PODGEO

Registered User
Jan 18, 2012
54
how are you doing

Dear CALLYDG
Read your posting just now, and it resonates with me; my husband is just like you dad; follows me around, asks same question repititively; we get into rows;yell at each other; then I feel gulity..........
It's ok to feel guilty; we wouldn't be human and compassionate if we didn't
Try an exercise; when you have a moment to yourself..........I have very few !......write down what upset you, what upset him; why your response was unhelpful; what you could do better next time
Maybe you just need to get out of the house into the garden and calm yourself

I try to remind myself that he is always the man I knew and love; some things have changed; but he is till very affectionate; his memory is not there for some things but his emotional and spiritual memories I hope will always be there

Take care
Podgeo
 

eeee

Registered User
Jul 11, 2012
2
derbyshire
i know how you feel.

i know exactly how you feel, im terrified, upset, i feel like ive lost my grandad in a very short space of time, the person who used to be the protecter now has to be protected. so scary, your not alone.
xxxx
 

qubecks

Registered User
Jun 28, 2012
38
nottinghamshire
x i can relate to this too

hi x i can feel what you are feeling ? people sometimes dont like to addmit what is happening to our loved ones ? it is very real, and very scarey for all of us going through this ? sometimes i feel i never will be happy again ? but at some point i hope i will ? when you care for someone with this dreadfull illness you feel guilty to feel happy ? well i do ? but surely it must pass ? x
 

ceris

Registered User
Jun 7, 2012
67
Bedfordshire
Me too

Hi there. Just to add - I know what this is like too, and you have my sympathy, empathy, and very best wishes. This whole thing is terrifying, and other people who aren't going through it don't understand. TP has been a blessing to me. I'm still struggling to cope but at least there are people here who know what it's like.

Very very best x