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Ataxia UK
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My Grief

I recently had one of my posts taken down that I think caused more confusion than it was actually worth so I thought I would share some information with you about what I have just been through after my most loved mum died. I posted it on this site and was totally overwhelmed with your fantastic response.

Well I know I have to be careful what I say as I really am not basing this on upsetting anyone just one of those things that regardless of disability that we will all have to face. I am feeling pretty broken as when I went to the funeral, I actually only stayed overnight so I didn’t do anything. I then agreed with my sister that I would go back for 5 days, this Is 200 miles from my house and took a lot of effort to get there. My sister knew I was coming and what did I face was she had stripped away every single possession that my mum had ever had. She would never have got away with it if I was still driving so again against the fact that I can no longer drive, I do have a brother and told him I was feeling pretty broken and he told me to leave it. I can’t but I have no idea what to do.

I am not trying to highlight anything as I never intend to do that but if I did upset anyone in my last post if you did even read it then it was the last thing on my mind. My heart is broken and I still have at least 3 more trips back to Wales which is going to involve anyone I can find to help me. I did tell a few people that I wouldn’t post again and thought about it, should not this site be open to what we are dealing with?

If I am really wrong then I am gone.

But there are more than a few of you that I love dearly. It is really hard to shut me up!

Denise xx

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Thinking of you.

x

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thank you xx

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Denise my lovely, you have done nothing wrong, we are all entitled to post what we are thinking about, wether it be what we have been through, suggestions or information.

I am sorry to hear about your mum, please accept my condolences, and of course your sisters actions after the funeral.

Your friends in this community are here to encourage and support you in the good times and the bad..... thinking of you my lovely.

Don 😀😘🌹 Xx

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You know I thank you. I think you have totally charmed everyone on this site and who could not love you for that!

Denise xx

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Love is all around....., as the song once went, and we are all here encouraging and supporting each other..... I hope. 😀😘🌹Xx

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I know and thank you again! You are a sweet heart as we said back in the day!

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Will I get into trouble if I keep calling you my sweet heart? It was the most horrible time of my life that my sister just took every single personal item away and I could do nothing I was then stuck there with her for another four days!! I just bit my lip but I couldn't even get her to understand what she had done. My brother said it is what he expected she would do but even he thought that my trip back was pre planned that she wouldn't have completely cleared out everything. I guess it is true you can pick your friends but not your family!

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Call me sweetheart as long as you want Denise, does my ego a world of good, and you wont get into trouble, because we wont tell anyone in the community about it...... lol 😘🌹 Xx

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My sister was very similar with my parents and my grandmother’s things. It hurt me a lot. Over time it will be more distant and won’t be so upsetting, right now in shock of death emotionally it is so much tougher. Breath, keep your distance if you feel things are getting to much. Seek support and love- do yoga, or run, or write . Anything that supports your inner world xx

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The problem is it is going on and on because we are going through probate and my brother has been dealing with that, more and more items are starting to come to light! But it feels endless and it is not like really having a chance to grieve. None of us live close together so it is not like popping over for a chat, but an endless stream of emails. I honestly think that we must be up to over 200 emails by now. Some I have not even bothered reading unless they are directed specifically at me. I seem to be copied in on a cross fire of emails between my brother and sister. I have not deleted any of them just put them away in a folder for one of those bad days when you really have nothing better to do! Our latest fight is over my dads grave, when I last went back to Wales I went to visit it with my sister and it is in a very sorry state we mixed some of my mums ashes in with the soil, it was quite touching. One of the few ideas I had that we use some of the money from my mums estate, that is not ours yet, to upgrade the grave and on this one my brother is refusing as in his words it is like throwing money in a bin! I got very little choice over anything to do with the funeral as I have mentioned before any of my mums personal stuff or in all honesty anything!! Thank god mum put me in her will as I doubt I would have seen a penny, although saying that I would rather just have my mum back. Sorry I have gone on again, you can probably tell that it is still quite raw and didn't help that the first thing I saw when I checked my emails this morning were another 10 emails between my brother and sister!!

Denise xx

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Yes this is how it goes, modern life and the way it is for most in this cases. Boundary yourself. Check everyday for example 30 mins of your day and then remove yourself and do other stuff. for the rest of the day. Grieving is for the rest of your life. Do not blame them as that will heighten your pain. Ensure you have your boundaries in place and get a counsellor in place if you need that to do that. You can grieve and it is up to your to give yourself the time and space too amongst this. All families go through similar and no circumstances prevent you from grieving , being a victim of grief will worsen your ability to grieve. You are always in control of what is happening so remember that.

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I do get what you are saying and I spoke to my sister this afternoon and actually told her unless it directly concerns me now then just leave me out of it, some of the stuff that keeps being raked up is totally pointless and as I said to her if my brother doesn't want to spend any money on my dads grave then we can.

There will be months before this is all over with and I do need to get some sanity back as I have realised that it already over two months since there has been any normality in my life.

Thank you for your kind thoughts. xx

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Praying for you, Denise.

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thank you

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It is 10 years since I lost my mum. She also lived more than 200 miles away and the day she died it took 9 hours to get there! I feel your pain. I did not have Ataxia then, but don’t know how I would have coped if I had. It still seems like yesterday and without such a great bunch of folk like on here to support me. Sorry for your loss and your sister’s behaviour. Take care.🤗 Linda

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thank you, it was bad enough to go through the funeral and then something that I even talked to her about that we could do together and at that time is was with my brothers blessing and then she just went ahead and did what the hell she wanted!

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So you have grief to cope with and you are powerless because of your ataxia with all the rage etc that will engender? Any advocacy people out there? This may not have happened if you were fit, or it may have happened anyway, shows a lack of respect not to inform you, maybe your sister had to do what she did, when she did? Being treated as powerless is infuriating!

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I totally agree and in between the moments that I cry I am really angry there is no way when I was fit and well would she ever have got away with it and I actually think she may have been taking stuff for years, but I have no proof what can I do but not send her a Christmas card again...……………..

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Dont bother with a Birthday card either! 😘🌹 Xx

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you just made me laugh!!!

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Now thats a good positive sign my lovely 😀😂😂😂😂😂🌹😘

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my trouble is I have quite a soft heart so I will end up speaking to her and my brother really is scared of her so it will just get forgotten as I will end up having to let go. As I am sure we all know that if you hold on to anger it just eats you up.

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Inventory every item from now - state to her this is important as legally you own 1/3rd of everything she has got rid of without your consent and thus is not ok by law. If she ignores and refuses inventory it will be on her conscience not yours anymore. It happened in our family, inventory was used to challenge anything that was taken without it being written down and any of us knowing. It helped me put my boundaries down and it ended up with myself feeling so much better - we don’t speak after my sister ignored the inventory and I challenged why she took something - it made me see I was better off without someone in my life who felt behaving this way was ok. Stand up for yourself in a clear, concise way. Leave emotions aside and see it as business - you own 1:3rd of everything and she can’t rid of anything without your consent as it is partly yours. Show her this message if you find it hard to communicate your needs xx

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Hi Denise sorry for the loss of your lovely mum ,I’ve been in your shoes with my so called family that live abroad.please feel free to message me..if you need a listening ear.💐🌹

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Thank you for that, luckily I had a friend over today that went through exactly the same thing and she has two sisters that she hasn't spoken to for three years since her mum died. I never thought I would feel like this and I hope it goes away, it is nothing to do in the sense of a financial value but I was close to my mum I know what is missing and this is true as she has said the words to me before, I am just the useless disabled member of the family what am I likely to be able to do to help! She acted like she was doing me a favour!

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Sorry for your loss Denise, I hope you and your sister can manage to sort this out.

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thank you, but I am not sure!

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Hi Denise, Sorry for your loss. My uncle died not long ago and he was dad to me, miss him so much. We had to empty his house within two weeks of him dying, because it was not his own home. It was very heartbreaking while grieving still, we felt like we were throwing his life away. Very sad times thinking of you.

Suzie

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thank you

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I can see how that is really hard although in a way short and sweet we are going through probate which I am told can take months so I guess I will maybe have to speak to my sister again although I will try and avoid her!

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Denise,

Sorry 😐 for your loss. It was always so hard to face such situations. I live with the states, and it makes me see that we are all in the same boat 🚣‍♀️.

I lost my lovely mom 11 years ago. Luckily for me, she had retired with Dad to where we live. My wife drives me now, which is hard to accept on my part.

My brother had moved out of town 3 hours away. He left it all to us to take care of her at the end. Then to empty out her life, as she sold the house 🏡 moving into assistive living.

I did it all while combating EA 2 Ataxia.

My Aunt and cousin helped at our hospital 🏥 .

I no longer talk to my brother, and my LA family hardly visit. Ataxia was not in their 🌎 to deal e.

We get dealt these cards ♦️, and you are dealing with it as best as you can.

I am a retired teacher and my life is not what I envisioned , once upon a great.

Stay strong, find a purpose and you will forget the bad times.

Take care,

Howard

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Hi Howard,

I don't think I ever want to speak to my sister again at the moment as to me she has taken total advantage of my condition and my brother is scared of her, I do get why!

Denise xx

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It only takes the death of a parent to find the most mercenary of the siblings. It never fails!

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I get it now! When I could drive if there was anything wrong with my mum I would just drop anything and go and after my dad died I would drive down there to pick her up and bring her back to mine. The last time I saw my mum was September and that took a lot of expense but was worth it and am I glad now that I at least did that.

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Thinking of you

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thank you

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So many “Friends” sending messages of blessings and comfort Denise, another good reason not to leave the community, forget what has gone before and enjoy your friends and your life as best you can, much love.

Don 😀😘🌹 Xx

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I know!

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Thinking of you at your time of sadness X.

This seems to happen all too often after a parent's death.

Maybe your sister is just one of those thoughtless people. She felt she needed to clear everything out and didn't consider anyone else. Maybe in her head she was saving you from the task.

I'm not trying to justify her actions - cos I'm with you on that she was so wrong!! But does she realise how much she has upset you? She probably didn't even consider anyone else. I have a sister in law like that - I'm dreading the day that my mother in law passes cos I think afterwards the three siblings will probably no longer talk to each other.

Treasure your memories, they are more precious than any possessions.

Take care. And you are NOT useless!

Sending you love and hugs xxxx 😘

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Thank you for that, but I can say for sure that she intentionally went behind both mine and my brothers backs, on the day of the funeral I set the dates with her as I didn't think it was a good idea me staying down there on my own. I arrived the day after her and everything was gone by then, although I did rescue a couple of items before she hopped off to the charity shop with them. There is no way that she could have cleared that amount of stuff in one day so it had been going on for weeks and then it became totally obvious that she had been taking loads of stuff home. Some of the stuff has suddenly come to light as my brother is dealing with probate and has been asking us, her really if we had any items of value, the latest is oh "mum has been giving me stuff for years!" I know I have to let it go but the worst for me is she has used my condition against me as there is no way once upon a time that she would have dared to try and get away with it, Sorry about my drawn out response. I am going back again when she is not there with a couple of friends and I will bring some stuff home, if there is anything left!

Hugs right back at you.

Denise xx

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Such a shame. Some people are so conniving!! 😖.

I really feel for you. Hope you manage to rescue some items

Love

Alison xx

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Me too, thanks Alison. xx

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