Finding it so difficult not to cry constantly.

[Rosie]

This is my first time on the board. My mother developed Alzeimer's at the age of 60, that's when the diagnosis was made. The illness is progressing ,swallowing is becoming a problem and each time I visit her I find it hard to hold it together.She open's her eye's to look at me and my heart is breaking, I work full-time on a women's health unit and I'm finding difficult to hold it together in work.I feel so useless and feel I should be coping better especially being a nurse but I know mam is slipping away and it's breaking my heart. I am looked upon by the family as the strong one but this isn't so , I feel so useless ,my mother has been in hospital for four year's and the care she recieves is good but I still feel gulity every time I visit and leave her there. I have had nightmare's of her being aware of where she is and being frightened and I feel such a terrible human being for leaving this happen. Hope someone read's this and understand's .

 

[Brucie]

We understand entirely

Hello Rosie

welcome to the forum! I hope you find that talking to others will help you.

Early Onset always seems harder for the people who have it, or who look after people who have it, but in truth, the whole area of dementia is hard for anyone who is involved. Each age group has different, but no less challenging, problems.

You say "I am looked upon by the family as the strong one but this isn't so". I think you most likely are strong, but dementia in a loved one dents one's confidence massively, mostly because there is so little one can do to help, and nothing to cure it. All you can do is your best.

Feeling guilty at leaving her.... Yes, of course - we all do when we leave them after a visit. Guilty too when we enjoy ourselves elsewhere and in our mind's eye, see them back at the home or hospital, unable to enjoy themselves. Guilty when we see what they are eating [though it may be very good] and want them to have food we have prepared. There's a lot of guilt, though in reality it is self imposed, and again mostly powered by our frustration at being able to do so little.

What can you do?

Look on the positive side and build on that. You are visiting her. Many people don't visit their relatives. She WILL know you are there and that you care.

Keep visiting, and talking to her. Treat her as if she is the same as she was SIX years ago. It will be hard because there may be no response, but I am convinced that it gets through to them. They know that you care enough to do that.

Don't beat yourself up about the situation. There's just so much you can do. Once you have done that, keep your life outside as normal as you can. Not only for your own benefit, but so you are well enough to be able to visit the next time, and the next.

Use the forum to rant and rave a bit. It does help to dump all this stuff out. It also helps others to see someone in the same situation as themselves. It is a lonely thing, being a prime carer.

Whereabouts in Wales do you live?

Regards

 

[Rosie]

Thank you Brucie for your word's, I know this " pouring out my feeling's" will help. After reading your word's I know other people are going through the same arwful torment seeing they're loved one's slip away into a world of their own. I try to speak to my mother each time I visit I tell her the news in the family and I play music I know she used to enjoy. When she look's at me sometime's I feel she can understand , that makes me sad and happy. Thank's again for replying, I'll keep in touch. I actually live in South East Wales.

 

[Brucie]

"I try to speak to my mother each time I visit .....sometimes I feel she can understand"

... and if she can understand some of what you say and most likely know that it is you there saying it, I'd say that would make the pain of the visits worthwhile!

It's nice to know where people come from! I lived for many years in Newport and my wife Jan, who is in care, came from Neath.

 

[janetruth]

This is my first time on the board. My mother developed Alzeimer's at the age of 60, that's when the diagnosis was made. The illness is progressing ,swallowing is becoming a problem and each time I visit her I find it hard to hold it together.She open's her eye's to look at me and my heart is breaking, I work full-time on a women's health unit and I'm finding difficult to hold it together in work.I feel so useless and feel I should be coping better especially being a nurse but I know mam is slipping away and it's breaking my heart. I am looked upon by the family as the strong one but this isn't so , I feel so useless ,my mother has been in hospital for four year's and the care she recieves is good but I still feel gulity every time I visit and leave her there. I have had nightmare's of her being aware of where she is and being frightened and I feel such a terrible human being for leaving this happen. Hope someone read's this and understand's .

Hi Rosie

This is your first thread 10/6/04
Trying to hold it together, because you are 'the strong one' is difficult in itself.
The past 3 years must have been terrible for you all.
Eveyone will have their own opinions.
My mum is 82 and lives with us. I hope, before she gets to the later stages of this terrible ILLNESS that she will exoire peacefully in her sleep.
I'm sure that is everyones greatest wish for their loved one, but for many, they have no choice and the suffering goes on.
Take Care Bye for now

Janetruth x

 

[Brucie]

I'm belatedly moving this thread to the Younger People with Dementia area because the initial emphasis was about a person with yound onset dementia.

 

[connie]

Dear Rosie, just realised you are online now.

Can you tell us how you are these days.? I can cry with you when I reread your post about your dear mum. Hope you are O.K.

Love n'hugs

 

[Rosie]

Hello, have you read my rantings tonight, I'm having an angry moment, it will pass, it's just so hopeless sometimes, thanks for asking, I'm doing ok, hugs Rosie x

 

[Rosie]

I'm listening to some music as I post & I have been listening to music that makes me blue! So I've got a lovely CD of The Beautiful South on now, it'll lift my mood I'm sure. Rosie xx

 

[candi]

i am so sorry for you i know excatly how you feel i have posted on here before because we thought my mum ( who's 59) had dementia but yesterday we were told she has CJD and it is extensive throughout her brain. I am a nurse and my family (dad and sister) look to me for all the answers and of course i haven't got any i am just as shocked as them but because i have some medical knowledge they think i can answer every problem sometimes i think it would be good if someone could realsied it is my mum as well not just a medical problem to be solved, sorry not sure if that made any sense, but perhaps you will understand. i also find it very hard to hold it together at work when you see all the poorly patients and their familys trying to cope and you just think hey i'm going through the same thing as you but we have to be strong and hold it together for them. i get very upset but try hard not to let my family see as i don't want to upset my kids or dad or my sister as i am meant to be the strong one as well. sometimes it would be nice to unburden it onto someone else who is stronger than me. my mum has been in hospital since january and i hate leaving her there and sometimes feel so guilty because i just don't want to visit sometimes i can't see the point as that is not my mum there anymore. take care candi

 

[Rosie]

Hello Candi,
Thanks for your posting, I'm sorry to hear about your mum. I can relate to your words & fully understand when you say about visiting because it's so pointless because your mum as she was has gone forever. I normally visit my mam on my own, I spend time just talking, playing her fav records, cutting her nails, creaming her hands & feet & I find the time spent alone with quite difficult sometimes, very often I'm fighting back the tears, luckily I can take my mam into the dormitary ward & there's only just the 2 of us. My younger brother gave up visiting because he couldn't cope, and recently he asked my Dad about visiting & my Dad told him not to, just remember mam as she was. I'm not sure how my brother will react when mam finally passes away, only time will tell.
Take care Rosie xx

 

[candi]

hi rosie i feel that visiting is pointless too some times mostly i go for my dad's sake it gives him someone to talk to as mum does'nt know if we are there or not i usually try not to go on my own as everytime i did i ended up leaving after twenty minutes or so as i got so upset seeing her like that and twice have broken down in tears on the ward. my sister visits reguallary but my brother only visits occasionaly as he to can't cope and comes up with all manner of excuses. what stage is your mum at can she do anything for herself? has she had tests? take care love to you and your family candi x

 

[Rosie]

Hi Candi,
My mam is at the final stages of AD, needs all care, has to have all her needs seen to. Her arms are becoming contracted because they are in one position most of the time. She looks at me , I would like to think it gives her some comfort knowing her daughter is there, but then again I like to think that there is nothing there at all now because I couldn't bare the thought of my mam knowing where she is. She looks at me sometimes and I'm not sure if she recognises my voice but there is never any noise or expression that leads me to believe that she is aware I'm her daughter. She mostly sleeps when I visit. I play all her fav records & sometimes there is movement in her feet , I like to think that she is enjoying the music in some way. But my mother was taken by AD quite quickly, she originally went into the hospital for assesment but in a matter of months she had lost all her ability to do anything herself. And it has got worse as the years has passed.
My Dad is having a meeting next friday with the Consultant to find out if there is any change, deterioration he means. I think my mam has slipped a little more further to the end of her life but there are days when she is able to take diet ( pureed) and thickened drinks. My Dad would like the staff & Doctor to agree to withdraw food & fluids but that will not happen, and when he see's the Doctor friday he is going to have to realise that what he wants is not going to happen. I've tried speaking to him but he just closes his mind to what I'm saying.
When I speak to him about my mam he just wants it to end & I find that hard to listen to sometimes. I don't want my mam to suffer anymore than she has with this terrible disease but until the nurses & Doctors tell us that she has finally lost all ability to eat I will still try to encourage her to take food & fluids.
Take care Rosie x

 

[Brucie]

Hi Rosie

I know exactly what you mean

I don't want my mam to suffer anymore than she has with this terrible disease but until the nurses & Doctors tell us that she has finally lost all ability to eat I will still try to encourage her to take food & fluids.

but I also understand what your Dad thinks, though I've thought hard and long and couldn't ask for anything to be done that meant that I had caused my Jan either discomfort through lack of nourishment, or ultimately, to pass on.

Before all this started, I thought it would be easy to say they would be better out of it - and they will be, but I just can't conceive of my being involved in hastening it. I'd have myself to think about afterwards and I would never forgive myself.

I'll give all I have to give to help my Jan, but in the end, I agree with your view.

Take care

 

[Rosie]

Thanks Brucie for your words. I know my Dad is NOK but it's my mam and I do not want her to starve to death or die of thirst when we are still able to provide food & fluids that she is able to take. Rosie x

 

[candi]

hi rosie. hope you are doing ok today. take care candi xx

 

[Rosie]

Hi Candi,
Im ok today, been working flat out, no time to think then. Going to see my mam tomorrow. Hope you are ok, thanks for asking x Rosie x

 

[Margarita]

Rosie I am a mother & I can say you surly are a daughter to be proud of to have .

Burce but dementia in a loved one dents one's confidence massively, mostly because there is so little one can do to help, and nothing to cure it. All you can do is your best.

that so true , thats been happing to me I think for a long while & I never relished it.