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wend

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My mum had a massive stroke 4 weeks ago on her 85th birthday. Three times we have been told to come to the hospital as she might not survive the night and 3 times she has proved them wrong. She sleeps most of the day, but yesterday she was awake and we chatted to her and she tried to say something, then went back to sleep.

I am finding this very hard, I am an only child and have been going into hospital every day sometimes twice a day. My husband said I need to see and speak to someone who has been through this. He said I am making myself ill because as I am eating I am feeling guilty because mum is being fed through a tube, and then feel guilty if I only stay for an hour.

Please help me to find a solution for mum and myself as I am feeling so sorry for my mum and my husband is feeling so sorry for me.

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Firstly welcome to this site. I am so sorry to hear that you are going through all this at the moment - your Mum sounds like she must be a strong person to have defied the doctors in this way and hopefully she will continue to improve over time. You have an awful lot on at the moment and being an only child you are taking all this upset on your own without being able to share it - there is little wonder you are feeling as you do. Your Mum is in the best place at the moment and probably wouldn't want to see you struggling and making yourself feel ill. I don't think there is any easy solution but I would encourage you to come on here when you can as there is a lot of support around.

Take care,

Sarah

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Hello,

I am sorry that you are experiencing a difficult time right now.

Our circumstances are different. I am not a carer. I had a brain haemorrhage 12 months ago; but I am an only child, so we have something in common.

I am sure that there will be carers here who can relate to what it is like to see a loved one unwell. I can only share with you the patient perspective.

Your visits will help your Mother. I looked forward to seeing my visitors, even if I mainly slept throughout the visits or was unable to communicate. It was comforting just to hold their hands and to hear their voices.

There is no reason for you to feel guilty for eating. I did not resent my loved ones engaging in normal life. In fact, I encouraged it because I needed them to be physically well to look after me.

Your Mother would not expect you nor want you to feel any guilt. I would imagine that she would take great comfort in you eating well. (You know what Mother's are like!)

I would sometimes hear my Mother expressing guilt for various things, which as a patient, I always thought a bit odd! Even to this today, she will not complain to me when she has a headache; as if I have some authority on them. (I don't!)

The tiredness your Mother is experiencing is very normal. My boyfriend started calling me 'Cat Girl' because of my need and ability to nap numerous times throughout the day.

Four weeks is incredibly early for a condition like this. The brain has an amazing capacity to heal, but it is very stubborn and will do things in its own time. Rest is an important aspect of recovery, although it can seem to carers that nothing is happening. This isn't quite true and there's a lot happening 'behind the scenes.'

I hope the following days and weeks bring some comfort.

Lynne

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Many thanks Lynne for your kind words of support. It is nice to hear it from my mum's point of view, but so sorry you had to go through this. As you say, there are lots of things happening behind the scene, albeit slowly, so I need to take it day to day as you probably are as well.

Thank you for supporting me which has helped.

All good wishes to you and your family.

Wendy x

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Dear Sarah,

Many thanks for your kind words of support. I can see what you mean about mum not wanting me to wear myself out, I just need to take each day as it comes and it has been helpful to put it down in writing and also know I am not alone.

all good wishes to you.

Wendy x

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Hi there welcome to btg

You mustn't feel guilty for anything it isn't your fault, and I'm sure your mom is glad you re visiting however long you are there.

Just be ready to listen to her when she feels ready to talk. Jess.xxx

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Welcome to BTG. My mum had a massive stroke 4 years ago, aged 74. It was awful seeing her so helpless and struggling to breathe. The great news is that she has made a brilliant recovery - she still has problems with her speech and her right side is still weak, but she is living independently again, with the help of a cleaner and home-help. Please keep positive! Where there is life there is hope, as they say.

I myself had an SAH in February and am getting stronger by the day. You have come to the right place for support and understanding :) I hope everything continues to go well with mum. Don't hesitate to come here and lean on us! Take care.

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many thanks to you all for your support. This is certainly a lovely forum with so many lovely people who in turn have their own problems. All the best to you all.

Mum was asleep today, but muttering when I was talking to her. The doctors want to see me tomorrow, the nurse said it may be about putting mum in a nursing home but surely this is too soon, just 4 weeks after the stroke? She still has the feeding tube and I thought nursing homes dont take patients with this in?

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Hi Wendy,

I hope that you get some answers from the Doctor tomorrow and you need to ask all of the questions that you are asking us.

Your Mum sounds as though she is doing incredibly well at the age of 85! I'm sure that they wouldn't do anything, that's to the detriment of your Mum and the feeding tube is keeping her nourished ... but the maintenance of the feeding tube, is something that you need to ask the medics, as none of us here, are qualified to give medical advice.

Keep talking to her, as many of us on here, weren't quite with it, when we had visitors .... but we knew what was going on around us and very much welcomed just hearing what was being said ... even if we did seem as though we were asleep..... it was just lovely to have the company and was a great comfort.

Wishing you the very best ..... xx

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hi wend

im sorry i didn't catch this post earlier you are going through my experience and i know very well how you feel please talk to us and let fly whenever you wish i know everyone on behind the gray helped me a really massive amount im sorry about mum but the fact she has come out the other side is a massive bonus don't worry about mum being fed through a tube my lin is still being fed that way even after two years now and she looks fantastic and now is on a diet to help her lose some weight mum can live quite well being fed by a tube and will get a lot of benefit from it i went through the sudden calls to the hospital but lin survived as mum has so far it can only be good news which may follow on and mum can get more mobile and a lot stronger it has helped me by writing things down on here and it has stopped me going round the bend i have kept a diary since lin had her sah and i still keep it up to date in the hope that lin may be able to read it herself or that i could read it to her when she is more able to understand so that is something you could consider

i think when you see the dr go in with an open mind but also you could ask if mum could be referred to a rehab hospital for help and therapy and to see if they can work on her to get her more mobile some homes do take patients with the peg feed as it seems more normal than you think lin is in a home and about 20% are on the peg feed and depending on mums progress she maybe able to eat and swallow hence returning back to a more normal way of life i will send you a message with my number when you read this message look on the top of the page and click on private message hope to speak to you ad if i can help you and yes you are not alone take care find some time for yourself please and take a rest because if you wear yourself out you wont be able to look after mum and hubby wont be happy either take care

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Karen, thank you for your support which is a great help. I saw the doctor today who said there is really nothing more that they can do for mum just see how she is in the next few days and have another chat then.

Mum would not want to be in this situation, my grandad had a stroke way back in the 70's and mum was very distressed the way he was. I have to admit I have had a large gin and a few glasses of wine this evening to help me through this sad sad time.

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hi wend

thanks for the message enjoy the tipple and try and relax but don't climb inside the bottle :lol:

i know its up to mum now but please don't give up you will find if mum continues to hold her own then thats good news if you want a chat any time give me a call and don't worry about what time it is take care good luck to mum

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Hi Wend

Warm welcome to the site......

As someone who's had the SAH I know how hard it is for the carers/loved ones like yourself but you must take time for yourself & not feel guilty about it (was there with my Dad so I know what your talking about)

Also I was an only child so know how you feel with that too.....

take care, & ps got a wise hubby there.....

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Hi Wendy

I'm sorry to read about your mum. I'm an only child too and I was really close to my mum. She had a SAH in 2001 and unfortunately did not survive. I think it was harder being an only child as I felt I didn't have anyone to share the worry and pain with but then I suppose some siblings don't get on so you're not always better off having siblings.

Maybe if you feel you need someone outwith your family and friends to chat to, you could arrange to see a social worker at the hospital or even a hospital chaplain (you don't have to be particularly religious for them to see you, from what I can gather), even for a one-off appointment/chat. There shouldn't be a waiting list for either of these (I hope) so you could maybe get some immediate release for your thoughts and worries.

Thinking of you and your mum.

With love

Anne

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