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Grief not once, but twice and so heart breaking.

JOLLYDOLLY profile image
JOLLYDOLLY

Hi everyone!

I lost my mum February 2016 after a long long battle with Dementia. My mum was my world, I idolised her, but I feel that was not really reciprocated by the way she was me. I always felt the big disappointment because I was not the daughter she felt she deserved and desired. Fourteen months on and I feel I am now losing my dad. He was the same with all of us. He is currently in hospital after deciding that life was not living and decided to stop his medication, stop eating and drinking. He finally asked for help on Sunday and was rushed into hospital, but there is a big problem with his kidneys and he does not seem to be responding to treatment. I am a carer for my younger sister Jen, who has Down Syndrome and although I have a wonderful family and fabulous husband, I feel so alone. I can't seem to get to grips with grief and I would never imagine in my wildest dreams, that it would run so deep. I admire my sister and how she copes. Every morning she will say "Is mummy alright?" and every morning, I will say "Mum is happy and watching you, she is up there in heaven" - she then smiles and says "That's nice, mummy is beautiful" - then she just gets on with her day, I so wish I could feel that way and I admire the way she copes. Now I fear, I am losing our dad. How will my little sister cope?

Ironically, my dear mum would always say "If something bad is going to happen, it will be on a Wednesday!" She died on a Wednesday and now a new Wednesday is upon us, are we going to get the news we have been dreading, or is it going to be worse. I hope not :(

Take care everyone and God bless <3

22 Replies
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Sorry to read about trouble having IF your dad as sepsis that will stop him eating.

Doctors should rotate antibiots and check is kidny function GFER and Caritine also should be on fluids.

You would be amazed at how people mistate decline in demetia and write them off when its just a uti.

Hi JOLLY DOLLY

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Hi

I know exactly how you are feeling. We lost my dad in April last year, he'd had Alzheimer's for 5 years and mum was his main carer. She has since lost interest in life, she wasn't eating or drinking properly and seemed to be surviving off a diet of coffee and crackers. It all culminated in me getting a phone call at 9am one Sunday morning telling me she wasn't feeling great and had been ill on the night so she didn't feel up to skyping my sister as planned. I smelled a rat and went across to see how she was. It was immediately apparent that she'd been vomiting up copious amounts of blood! I got her to A&E right away and of course they diagnosed she had a bleeding ulcer. I know the only reason she called me was because we were due to Skype my sister, if it had been any other day she would never have told me and lord only knows what would have happened! Well actually I know what would have happened, she'd have continued throwing up blood till she'd lost too much to survive!

I'm having to come to terms with the knowledge that my mum doesn't want to be here, I think that's what you're feeling too about your dad. It's heartbreaking and I'm sure you have some really dark days, I know I do!

Firstly, I know you say you weren't the daughter your mum wanted, I wonder why you feel that? Also can any of us truly say we are everything our parents wish for? Your mum had the knowledge that you loved and cared for her and that you love and care for your sister and dad I don't believe you were a disappointment to her! Being disappointed for (a very maternal feeling) is different to being disappointed with.

As far as it goes with your dad, I have to keep reminding myself that my mum is 86 and no one lives for ever. It's so hard because we always expect and want our parents to be there. I still have times when I'm trying to do something and think "my dad would know how to do that" but if he was still with us he wouldn't be able to help because of his Alzheimer's!

My mum just lives a few minutes down the road from me and I see her most days, there isn't a day that I don't get to the front door with a feeling of dread wondering what I may find on the other side!,

I really don't have any answers for you, I just want you to know that you're not alone in all the fears and emotions you're experiencing! You are right that your sister is fortunate with her approach but you also have to realise that it's because you are providing a loving, caring environment for her that she can deal with her loss the way she does. I think you will have surpassed your mothers expectations by that act alone!

Take care of yourself x

NFDK profile image
NFDK in reply to Little-nelly

What a very sensible, truthful, kind reply :-)

chloe40 profile image
chloe40Administrator in reply to NFDK

A warm welcome to you NFDK

Chloe

NFDK profile image
NFDK in reply to chloe40

Thank you very much, chloe40 :-)

Thank you for your kind words Little-nelly, they mean a lot to me to hear :)

My mum was diagnosed with Lewy Body Dementia in May 2011. The reason I said what I did, was because of what they both have said through out my life and my siblings. I guess it is hard to understand the complexities of a family dynamic, unless in that situation and knowing the circumstances, as it is for us all.

We always had nick names for mum over the years, but the one that we say the most, especially before her illness, was Jilly-But! (her forename was Jill) because there was always "but" at the end of everything she said lol. However, I did take comfort throughout her illness at some of the things she did say, even though she most probably would have forgotten them a few minutes later. Towards the end, when she has lost the ability to communicate, it was only me, that she let comfort her and my voice she recognised. But I was the one who visited her most, although I missed being there at the end by an hour. I was caring for my sister at the time.

My dad has always been very controlling and since Mum was taken into care, three years ago, he has not made life pleasant to say the least. In the last few months, he has made it quite clear, despite us trying to rebuild bridges and try and move on being a family again, that he did not want to live and it has come more obvious in the last couple of weeks. He had not taken his medication correctly for a long time and now I have found out, there are loads of medication unopened, dating back months. In the last two weeks, stopped taking his medication altogether, drinking and eating. Refusing all medical help and family help and be aggressive and rude to everyone. However, we continued to visit, take food and drink and encourage him. Last Sunday, things came to a head and my brother found in slumped in his chair. He relented and asked for help, so the Emergency services were called. We had hoped he would be recovering slightly by now, but no, he is getting weaker. He is very slurred when awake, but also very sleepy. His oxygen levels are not sustainable without oxygen supplement.

I have been to see him today and I think, like when I saw him at the hospital on Sunday, that he thinks I am mum by what he is saying. He is definitely weaker, but at least his kidney function has improved from the dehydration.

I was sat there and felt like it was a bit de ja vu as we were in the same place last year but different wards. He was in respiratory before but now in complex needs.

I feel he is giving up and slipping away :(

You take care as well :) x

That's so sad and I think you are probably right when you say you think your dad is giving up. You say he's always been controlling, is it so surprising then that he is exerting control in this situation? The sad reality is that there is really very little you can do to stop that except be there for him and show him you care - in other words keep on doing what you've been doing all along.

I think it's very telling that you were the one your mum recognised and wanted to get comfort from. I used to manage a care home for older people with dementia and the fact that she took comfort from you shows that she was relaxed and comfortable with you, she knew she would get the affection she wanted from you. That really tells you what your mum felt about you.

I hope you stay strong for your dad and sister but don't forget it's ok to have a little cry now and then. I have mine in the morning before anyone else is up, I don't wallow in self pity but just acknowledge the emotions I have and let them out in the company of my dogs who sit and give me cuddles and make me feel more ready to face the day!

😊

I am like you. It is only recently that I have been able to wake up and not sob. But I want to be happy, so I am taking little steps, although they are hard to take at the moment.

Thank you :)

you could not have been a disappointment with everything you do....appreciate your own family competence and love...you deserve it! Best wishes to your Dad x

chloe40 profile image
chloe40Administrator in reply to chrissapam

A warm welcome to you chrissapam

Chloe

So sorry for your losses and your grief. You are being hard on yourself though. I might hazard a guess that, with everything you are doing for other people, you have little time to attend to yourself. Sorry just a little reply because I am in physical pain, but I did want to comment and also just to say hello. Thinking of you, Wendy x

JOLLYDOLLY profile image
JOLLYDOLLY in reply to NFDK

Thank you Wendy for your kind words. I hope your pain has subsided a little right now and thank you for taking the time to write these lovely words. I have a lot of health problems myself but now in recovery. You take care and thinking of you too :) My name is Jayne xx

NFDK profile image
NFDK in reply to JOLLYDOLLY

Thank you, Jayne xxx

I'm in a similar situation in that my mum died in August 2014; I was very close to her and she had Alzheimer's. After she died I discovered that my dad was lying to me (as he had been to my mum) and seeing a woman who had been on the scene for twenty years, although he said that they were just friends. I had a rocky relationship with him because of this and his lies which I found very stressful whilst I was grieving for mum. He now has dementia and Alzheimer's and I had to put him in a Home at Christmas so I'm losing him although feel I lost him before this, although I hadn't realised it. He has physical health problems too so I don't know how long he will go on for. I'm also having to clear my childhood home ready to sell so lots of upheaval and upset. I do sympathise with you. Keep going and take care of yourself (something which can be difficult to do, I know).

Karen

JOLLYDOLLY profile image
JOLLYDOLLY in reply to klr31

Yes it is Karen isn't? It is hard and difficult and I am so sorry to hear about the loss of your mum and the news of your dad.

We are going through stuff at our childhood home (My husband and me to be honest) not a nice experience because of what we found and the mess it is in. But need to do it.

Keep strong and take care, I am always here. It is nice (if that is the right word) to come to a place, where there is someone, somewhere, who will understand. I thank you for sharing your story.

Jayne :)

chloe40 profile image
chloe40Administrator in reply to klr31

klr31 A very warm welcome to you.

Chloe

klr31 profile image
klr31 in reply to chloe40

Thank you, Chloe.

Hello Jollydolly

I hope yesterday wasn't too hard for you. I just want to say how sad it was too read your post, I suspect that if you had asked you r mum how much you meant to her she would have told you just how very proud she was. I say this with some experience in that my husband felt the same about his Father, he never felt he lived up to his Dad's expectations or matched his older Brother. I felt that the only way to know was to ask him, so I did and he was shocked that my husband believed that. I'm afraid that the older generations (I'm 51 so no youngster) were not bought up to show emotion in the same way. How could your Mum not have felt love and pride for a daughter who is so obviously loving, caring and thoughtful. I hope that your Dad recovers, remember he asked for help so although he was lost in grief lets hope he has found his motivation for living.

Hi bunty65,

Thank you for your kind words. Any consolation, I am 55. :( Although I feel about 90 at the moment lol. I have read each and everyone of the replies to my original post and I have taken note and comfort from each and everyone. I thank you all for taking the time. It has helped me a lot in some ways.

Although, I did not get the recognition in life from mum that I wanted, I feel I am at peace because I fulfilled the promises I made and perhaps that is why she only wanted me to comfort her and recognise my voice at the end. I know she was at peace, knowing that my sister was happy and healthy.

I am very worried about dad, I do feel that he is slipping away. He is getting more sleepy and agitated each day. After what I found out yesterday, it confirmed what I already knew. He had kept so much from us, I guess another way of control. But it has answered my questions and now makes sense. My brother and I, have been having the same thoughts and I will ask his doctors tomorrow when I next go in.

Keeping you all in my thoughts and prayers, please feel free to message me any time.

Take care always :)

chloe40 profile image
chloe40Administrator

Hello JOLLYDOLLY

Your post touched my heart and I really feel so much for you.

Losing your Mum is very painful and I'm very sorry that you had to watch her deteriorate with Dementia. You're such a selfless lady, caring for your sister is a wonderful and difficult thing to do but of course you would do that because you are so caring yourself but you need to reach out to people to help you through this really stressful time. Your sisters innocent words brought tears to my eyes, bless her, she will cope whatever happens you can be assured of that. It's you that I am concerned about, please know that you are never alone here on Bereavement Care & Share and you have every single member here supporting you, so please drop in as often as you want.

I am very sorry to hear that your Dad is now very sick and I will keep you in my thoughts. Take care Jolly

Chloe

Thank you Chloe, that means a lot.

Unfortunately dad passed away this evening. It was peaceful and we were all together except my sister. I will tell her at the weekend. Business as usual for her as mum and dad would want. I was able to say a lot to my dad and spend some quality time with him on my own too. He was like my daddy and I was his little girl sat on the back doorstep many moons ago. I think my words were the last he heard and I was able to say to him "Mum is waiting for you" that seemed to help him on his way and then he was gone. Brought us all peace :)

Thank you and each and everyone of you, for all the lovely kind words, they have brought me such comfort.

I am here for you all :)

Jayne xx

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