this endless sadness

[susiewoo]

I am so tired of feeling this endless sadness over the whole situation with my Mum. She has been in CH for six+ years and it doesn't get any easier visiting her..in fact it has got progressively harder for me. She is well looked after and apart from wishing with all my heart that she didn't have this terrible condition, I am happy with the home/staff etc. She is mostly happy and smiling when I visit but it makes me cry everytime. My life feels in limbo waiting for her to die but dreading it too. It all seems to have been going on forever and it is so hard to maintain the same level of commitment and then I feel guilty about not visiting so often...When relatives ask how she is I find it so hard not to scream at them cause how hard would it be for them to visit? Everyone always has good reasons not to. I have reasons myself but the guilt over comes them.
Sorry for the moan especially on such a lovely sunny day but it just gets me down.

 

[macsmrs]

I completely understand that feeling of limbo although my mum is still in her own home after 4 years but not coping. Her younger brothers both live abroad & I used to contact them by email to let them know what was happening but got no support at all. They do not even bother to ask how she is let alone tell us if they are in the country. My mum was really worried recently about the flooding in Australia as her brother (or son as she now calls him) lives there. She wanted to ring him but it turns out he'd been in England for 6 months at the time! My own brother does what he can but lives on the other side of the country and my daughter is good but it's very hard when you feel like the only one going through it. I often cry driving to and from my visits!
Sending big hug of support to you!

 

[Sue J]

Don't worry about the moan - your feelings are real. I too understand what you mean about the apparent endless sadness, yes I get really angry and frustrated but underneath all that is just very very deep sadness. There are no words then.

It sounds like your Mum is content and well cared for are you able to talk to the staff at the home about how you feel?

It is so hard too when other family members can't see how much it would help everyone if they could just make one visit.

Sending you what support I can and if you can get a walk in the sunshine - it can lift sometimes even when we don't think it can.

Take care
Sue J

 

[Grannie G]

I also understand how you feel susiewoo, especially when relatives and friends expect you to be the messenger. It is so hurtful and very annoying.
I remember my sister ending a phone conversation by sayong `keep me in touch`.
I`m afraid I was quite rude and told her she knew where our mother was, the address and phone number so could keep herself in touch .
I don`t know how often you visit but could you reduce them? Would it help?

 

[susiewoo]

Thanks for youe reply. I miss my Mum soo much. We were so close and lived in each other pockets. I know there is nothing anyone can say or do that will make it better. I know Mum would hate that she has ended up like this.I hate leaving her there but its the best place for her. I just want her back.

 

[CathT]

susiewoo and macsmrs I totally empathise and identify with your feelings.

Recently, a close friend's father was diagnosed with a terminal illness which ended his life in a matter of weeks. I hate to say that a part of me was envious of her as although a terrible shock and painful bereavement process she was able to dedicate those last weeks to his care and then start to rebuild her own life. She has not had to witness the process of her loved one losing all their dignity, battle with the social care system and sell off all the family silver to pay for so called care.

I too dread visits and cry for ages afterwards. I also spend a lot of time wondering how my mum is spending her hours and worrying that she isnt being bothered and upset by others. I think my mum is at stage 6 but as she is physically very well (we cant keep up with her when she wanders 'home') I think we may have a good few limbo years ahead of us which wouldnt be so bad if I didnt think she was happy and content but sadly she is very depressed and keeps saying she just wants to die.

The whole situation is so depressing. I am an only child and with the exceptionof my 82 year old father there is no one else taking an active part in caring and visiting my mum, so I know how helpless and alone you must be feeling.

I now realise that this post hasnt helped you at all but maybe it is a comfort to know that there are others out there feeling the same sort of pain and emotions as you.

Sending you best wishes and big hugs.

CathT xx

 

[macsmrs]

Like Sue says it sounds like your mum is content which I think is something positive in this situation.
You obviously love your mum very much and you are grieving for your loss but maybe you don't recognise it as a bereavement as your mum is still with you.
It's very difficult when you feel the need to visit out of a sense of duty or guilt but its really only us that put that pressure on ourselves.
As you know your mum is safe and apparently happy where she is I would visit when you feel strong enough that way it will be better for both of you.
Love Jo

 

[macsmrs]

CathT
I re read my first post and thought the same - I was being selfish and moaning about my own situation hence my second hopefully more objective / empathatic post - but actually it does help just hearing about other people who understand what you are going through. My husband tries to understand but he just doesn't get it!
Also know that feeling of at least with a physical illness where there may be some symptoms you can treat.
Can't believe I'm on here for the first time on such a beautiful day but this is what I needed!
Jo x

 

[Sue J]

Sadness

Dear Susiewoo

Maybe if you are struggling to visit so often, perhaps speak to the staff at the home and ask about making phone calls instead - I know often people don't like to phone homes because they are always so busy - and you could perhaps relay a message through a carer that you have called and are thinking of your Mum. I know it's not the same but staff do understand how difficult it can be for you. However, maybe you already do phone the home too so sorry if it's not a relevant thought.

Ask the staff if they can help you through what seems like a transition stage - as Jo says you are in a bereavement - and perhaps adjusting what you do is part of that process. I know what it feels like that nothing will take the sadness away but try not to let guilt make it worse. You are still caring for your Mum even if you don't visit so often and it sounds like you've done more than your fair share. Not that that helps because you'd do it all again no doubt.


Just some thoughts

Sue J

 

[kasglass]

I know how you feel, my mum is in the last stage of vd and is bed bound,cant feed herself,no speech and incontent. As a family we have had over ten times in the last five years been told by the doctor, mum hasnt got long to live be ready to rush to see her.I go to visit with my dad once a week and help feed mum (not a task i LIKE) but it helps dad to feel as though we are doing something.I have been through several stages of how i feel about mums illness, anger, sadness, helplessness,greving this has made me a stronger person by the fact that even today 6 years after diagnosis, i may be an emotional wreck at times but i am still strong enough to cope with every crisis this illness throws at us.MY advice to you would be to see your mum when you feel strong enough to do so, dont feel guilty if you dont get to visit weekly, dailey , just go when you can.

 

[tessadragon]

Sorry for your pain, Susie...it is a very hard thing to witness. I can only wish you strength.
The others are right, sunshine can make a big difference.
I find taking time to go somewhere where thoughts can be gathered and the heart can be soothed is a big help (from just the garden to local parks, or National Trust areas or anywhere really)
Also listening to music has been very cathartic on particularly trying days and if it feels right, singing along too.
If you like aromatherapy you could try rose which is an emotional oil (my aroma teacher used to describe it as a 'hug in a bottle') or juniper (an emotional pick-me-up), as a few drops in the bath or in a tea-light oil burner or a drop on a handkerchief.
Helen

 

[sistermillicent]

I have tried to post something helpful, but I can't, I share the feeling of endless sadness, that's all.

Love Pippa x

 

[Christinec]

Can only agree and thanks for posting and putting this so well. Mum in home for four years and has been ill for about 10. I aim to visit weekly and no it is not getting easier. I hate to think about my Mum's life now and suspect my main coping mechanism is blocking it out and consciously trying not to think about Mum and her situation except when I have to. I dread the day I visit and usually leave in tears. Staff must think I am completely hard hearted because if they are nice to me they make me cry and I do not want to do this so I tend to be brisk with them.

Oh yes and my great brother who never visits now and has never really wanted to do anything. Apparently that all up to me as the woman. When Mum is really ill he says "well let me know what is happening after you have been in to see her".



As I said to my doctor recently I know I am depressed but know that it is caused by this situation and there is nothing much I can do to make it better.
It helps to know others face the same feelings and I am sorry not have any positive suggestions. I do frequently remind myself that I am fortunate that Mum is in a home and being well looked after. Care places are in short supply in this area and I cannot imagine what would have happened if she had not been given a place.

 

[dottyd]

Thanks for youe reply. I miss my Mum soo much. We were so close and lived in each other pockets. I know there is nothing anyone can say or do that will make it better. I know Mum would hate that she has ended up like this.I hate leaving her there but its the best place for her. I just want her back.

I know the feeling and I haven't lost her completely yet.

I'm an only child as well. I also 'care' for my aunt -mum's sister.

I have a lot on my plate!

 

[dottyd]

I know how you feel, my mum is in the last stage of vd and is bed bound,cant feed herself,no speech and incontent. As a family we have had over ten times in the last five years been told by the doctor, mum hasnt got long to live be ready to rush to see her.I go to visit with my dad once a week and help feed mum (not a task i LIKE) but it helps dad to feel as though we are doing something.I have been through several stages of how i feel about mums illness, anger, sadness, helplessness,greving this has made me a stronger person by the fact that even today 6 years after diagnosis, i may be an emotional wreck at times but i am still strong enough to cope with every crisis this illness throws at us.MY advice to you would be to see your mum when you feel strong enough to do so, dont feel guilty if you dont get to visit weekly, dailey , just go when you can.

Oh dear-we haven't got to that stage yet.

mum has a slight heart problem and when her time comes I hope and pray she will just gently go to sleep and not wake up saving us all from getting to that awful stage.

When my aunt first went into her care home there was a lady opposite that just lay on her bed for months-never opened her eyes. her daughter fed her every night-it was just awful. That lady must have lived like that for at least 8 months before passing away.

I hope we don't have that.