I hate visiting my mum!

My mum had a terrible stroke that took away all quality of life, speech, movement awareness --- everything, she lived for nearly nine years. For the first 8 weeks I visited every day, then when she went to a nursing home every other day, but gradually over the years I dropped it to once a week. My three brothers did not live locally so saw her occasionally. The local high dependency nursing home we first chose said they couldn't take her due to her needs!!

Dad was alive for the first 21 months after her stroke, and went in three days a week. He was war disabled so he used a car service, as I was at work full time. I also took him at the weekend.
When he died, very unexpectedly and suddenly, the four of us went in to tell her--- it was pitiful, she just kept looking at us, and after a while said very clearly 'it's your Dad isn't it?, one of the few times in those early months when she spoke. She then stopped eating for about three days, but lived in another 7 years ---just a skeleton in a bed. The nursing home said they had never had a case where the 'well' spouse had died first.
She lost the sight of one eye whilst in the geriatric hospital, the nurses said it was cream they were putting into her eye for her conjunctivitis, which developed immediately after her stroke, but it turned out to be an abscess, and when her cornea burst...... ---her screaming will haunt us. The nurses had moved her into a side ward and said it was the affects of continuing mini strokes that affected her caused her to be distressed and made her scream! The eye surgeon was called at that point, and said it was a fully preventable eye condition and if he had been called he would have seen her, and treated her, and saved her eye. He said the eye was gone, but he would do what he could to save her life. He was soon silenced, the wall of hospital 'we do no wrong' attitude was tightly shut.

My parents were both in the Army in the 2nd world war, and they were both treated awfully in hospital at the end of their lives, there was no real care. My father was admitted at 3:30pm with all the symptoms of a heart attack, but he wasn't treated for it, just connected to a heart monitor. At 9:00pm he was dead. My mother has been his legs for 50 years, and without her.....

When we complained or questioned we were either made to feel 'we are the medics, we know what we are doing' , or were just ignored. My mum was the only patient in the geriatric hospital who had had such a catastrophic stroke, all the others were either broken bones, hip replacements or improving stroke patients, when I used to go in at the end of my working day, to sometimes find her slumped in a chair in a harness, on the edge of the seat where she had slipped down, the other old ladies used to say how awful my mother was treated. Often when we went in at meal/ drink time her food or drink was on her bed tray totally out of reach but in view, with no speech or movement, she couldn't communicate, or even use a buzzer, always placed on her bed, that she wanted her drink or food - what type of care is that?

I could go on as this is just the highlights, but once you start you do not know where to stop........

Could we have done more?!, those 8 weeks were one of the most disturbing times of my life, the nursing home we luckily found treated her like a princess, no bed sores in their care!!

Our relationship was good, we all loved her and she loved us ---unconditionally. I like to think she would not have been disappointed at what we did and how we tried to make her life bearable. We talk of our parents lots, and try to only remember the good times and those values they instilled in us In a very working class household. Thanks to them we all did very well in life.
We all do our best, even when others conspire against us, love never dies, (((hugs))) to everyone going through difficult end of life care of their parents and family.

Kitty, my heart well and truly goes out to you.
I have worked on a ward for Elderly Patients for very many years, and as such, I have had lots of contact with relatives of dying patients.
I cannot tell you how heartbreaking it is to see Family members desperately trying to be with their loved ones all of the time, regardless of the effect that it has on themselves, and indeed their Family. The guilt that they feel if they cannot be there all of the time is almost palpable.
Dear Kitty, all I can say to you is that YOU also need a lot of TLC at this very difficult time.
You have done as much as you can for your Mum, you cannot do anymore without it affecting your own health.
Your Mums' time is sadly drawing to a close, but please Kitty, think about yourself too. Big Hugs to You .

kitty - I'm going through this too just now - my relationship with my mother wasn't good all the time - but strangely now I see her so frail - can't talk, eat, just lying there and all I can do is hold her hand and stroke her forehead - I just feel love. I don't care what happened when, where and all that has passed before - in that moment when I'm with her I know it's precious - and all I feel is love - and I hope she feels that too. So good kitty your friends keep your spirits up at this time. What a lovely support on gransnet too.

With my parents I later realised that this was all part of the gradual process of letting go. As time went on you could see that there was no hope of recovery and this helped you to accept the inevitable. I made bargains with myself such as, if they have to be ill please don't let them have to go through a big operation. Later it was , if there is no cure please don't let there be too much pain. Then at the end when you just did'nt want to see them in that condition any more, please let something happen one way or the other before too long. I think it all played a part in accepting that the end was near.

Kittylester, I have to admit I felt exactly the same as you, for many of the same reasons (mine was never a good motheror affectionate woman, always chose the nasty comment over the nice, and I could not cope with all the same physical aspects you mention). I really, really struggled through this last year, looking after her one day a week. The incontinence, the shouting, the nonstop everything. I had to steel myself to go every single time, hating it, hating myself for being such a rubbish daughter too. I did feel human compassion for the state she was in, but I found it so hard to deal with in person. I have never been able to tell anybody how I felt, you are so much more open and honest. She died 3 weeks ago, and my overwhelming feeling has been of release. I wish you strength too, amid all the support and good advice above. X

Kitty, please don't apologise, you are not moaning. My husband was diagnosed with Alzheimer's when he was 52 and he'd had it for a good couple of years before then. It was absolutely horrible for the next few years with him being so terrified and upset about what was happening to him and it was hard to care for him because he hadn't been the best husband by any stretch of the imagination. But, we do it don't we. He's been ill for 15 years now and has been in the home for longer than any other resident. My life goes on pretty much as normal, or as normal as it can and I go and see him but only every month or so. He hasn't got a clue who I am, he hasn't for years and there is no eye contact and he can't talk but I go and I talk to him for a short time and then go and visit my neighbour who is in the same home. When my phone rings and the name of the home comes up, my heart flips wondering if it's bad news and I can truthfully say, if it was me in the home, he wouldn't be visiting me.

Like everything else that hits us smack in the face in life, we learn to live with it and deal with it don't we. My worry is........ who's going to look after me and make sure I'm ok when I'm old

Kitty you are a hero! You couldn't have done more for your mother - and you've done far more than a lot of daughters would.

When I was running around after my mother (with whom I didn't have a brilliant relationship) my DD gave me the following advise taken from the airlines - Always fix your own oxygen mask before helping others. Look after yourself. (((Hugs)))

Kitty, if your Mum knows you are there tell her that you love her. My Mum has just died and I can't say that any more - I do wish I'd told her more often.

The Alzeimer society have a brilliant forum called Talking Point..just reading people's experience with what this thread is discussing was v comforting when I went thru this with my my mum...I'd often read it in those dark early hours when ur mind goes over everything ..
guilt was always a theme

My heart goes out to your Mum , I truly hope the end comes for her soon . x

Agree with Christingle. Wouldn't like to think my children dreaded visiting their dying Mum for the reasons given. We're all going to die and we could easily be in the same position in the future. In an ideal world I'd want my children there holding my hand. My son, 39, nearly died last year but I was there every day even though it was sometimes a 5 hour round trip if there was a problem on M25. I'm 70 this year and it was hard but I'd do it all again.

Libbysmum I am sure your comment was not meant unkindly and all of us would hope that none of our DC dreaded visiting us in our last week's/months/years even, but it sounded very judgemental of those (and I include myself) of us who are able to admit honestly to sentiments you seem to find unnatural.
As such that is not particularly helpful.
I imagine there are few people other than perhaps one's DH with whom one could share what kitty has said and I absolutely applaud her honesty. It will not have stopped her visiting her mum or given her mum any inkling of her feelings, so let's not judge, let's show more compassion.

Thanks Alea.

There is world of difference between visiting a mother who has not been very loving and visiting a much loved son. We spent six weeks in Japan when our son almost died. We would do that again in a heartbeat and I will continue to visit mum and do whatever is necessary until the end.

Kitty a big hug
This time last year my father slipped away from us under the bright easter moon
Like you I was visiting and hating every minute of it.
He was just as you describe your dear mother and also on end of life care.
It was very distressing as I was on my own my sister was in France.
I had asked my children not visit as I wanted them to remember him how he was their Gramps.
Now the anniversary approaches this week and I am trying to remember him as a fun loving dad + not the shell of a man lying in a bed.

What gets me through now is that my mum and dad are together

to everyone in a sad situation
Wishing in you lives very soon

So understand how you feel. I could write a book on my mother and her nasty ways. I am one of three , the only girl and she was jealous of me from the day I was born until the day she died. The middle one , the younger of my two brothers was always her favourite and she rewrote her will after our father died so that he inherited a far greater proportion of the estate than my other brother and me. My father would have been distraught if he had known.
I carried on visiting and helping out right up to the end to support my brothers and because I didn't want to stoop to her level.
It is is so hard to accept that your mother is like that and even harder for other people to understand especially when they have had a lovely Mum.

I'm sorry Emelle.That sounds very hard to live with. It's sad that your mum's bitterness showed to the end. Gosh most of us mums make every effort to be exactly fair to our kids and to promote good relationships between the children. I hope you and your brother can enjoy good relationships with your other brother.

Thank you for kind comments mumofmadboys! We get on well and it isn't his fault so no hard feelings there, from either me or big brother. Amongst her other 'talents', my mother used to divide and conquer but we worked as a team to support and help each other in the last six months of her life so get on better now than we have ever done.

Are you my long lost sister Emelle? Divide and rule was my mum's modus operandi too which is why we didn't speak for so long - we all missed so much.

Kitty it's horrendous - the constant guilt of knowing you have to visit but don't want to go - if you go the terrible feelings of helplessness and wishing you were elsewhere. My heart goes out to you and to all those who are going through the same thing or have just lost their loved one. My mum was in care for 3 years and finally passed away 4 years ago this June. She didn't know me and was crippled with arthritis, totally deaf and couldn't talk. She was like a small doll laid in bed at the end barely conscious - before that she had to be hoisted from the chair in the room with all the other residents which made her scream and fed like a baby - she was totally incontinent and her leg had atrophied so she was virtually in the foetal position most of the time. The last time I went I sat with her for a long time and finally told her as I left that she could go and join my dad and her dear mother and sister. I had to go away for the weekend and got a phone call to say she'd gone on the Sunday morning so I had to rush back. Don't beat yourself up about how you feel - it's perfectly natural.

I've nothing to add kitty but send my regards. Life can be so hard but keep talking I think it helps.

I didn't realise Kitty when I tactlessly said a few days ago that you would remember the happy times with your mum after she had gone,, well obviously sadly you didn't have any happy times. It must be such an ordeal. I hope the end comes soon.

How true kittylester - the sadness I felt on my mother's death was for what could, in fact what should have been in our family life. Her selfish, self centred behaviour meant that we had a cold, loveless childhood and sadly none of us, even the 'favourite' son felt any grief just relief but we all know that we did our best for her when she needed us to, not that it was appreciated.

Thinking of you Kitty. Just take a day at a time. xx

Oh, Kitty, my heart so goes out to you! Hard enough to have to watch a mother dying without the added pain of still having an issue between you. I would suggest forgiving her, if only to make things easier for you. But I imagine that would be hard to do if you still feel the favoritism is there.

You've been wonderful, so far, and if it really means so much to you to "show" (I'm not sure to whom) that your and your brothers are "working together," then, by all means, keep it up. But, IMO, you can cut back a little now. I don't say not to go there at all cuz people need to go and make sure she's ok and so forth. But if you're not going there with a heartfull of love, I imagine she can feel it, so it's not doing either of you any good emotionally. IMO, even though she's dying, you both need a little space.

Whatever you do, wishing you all the strength you need to do it.

Nannypiano, you are a saint! How lucky your GM was to have you! But she must have been a very loving woman whom you were happy to care for.

I know it was painful to lose her and my heart aches for your loss. But I'm sure the doctor felt he did all he could. It's normal, though, I think to look back and question this and that. But actually, I doubt there was any way anybody could save her - it was her time. Please take comfort in the fact that you could happily be there for her and that she's now at peace/out of pain.

Meanwhile, my heart is with everyone here who has suffered the loss of a loved one or "lost" is "losing' the person they knew to dementia. Mander, especially wishing you all the strength and wisdom you need.

Peace and (((hugs))) to all!