To marchbank and any one who wants to listen

[simonmonty]

Hows it going marchbank not seen any posts from you in a while.Thanks for your private message. Has it kicked in yet that your lovely mum has past on now. . Reading your post about being on auto pilot it just sounds that way thats all. Then again sorry if ive got it wrong. It took a week or two for me to realise my lovely mum had moved on with out me her dutiful son. Then i started feeling guilty, regretting and hating everything including my self as well as this terrible illness. Ive commented on a few peoples post but this is the first real time ive talked about my own feelings i think, its just that my head has been a bit messed up nothing seemed real was on auto pilot my self i think and having to deal with nasty siblings. Only now have i started really to think clearly about everything. But my feelings change daily up and down regretting, feeling guilty and hating the so called family for not understanding my mum or this illness for not just being there for her and the system that was supposed to have helped her for failing her and the dam cancer i got at the worse possible time. Im trying to find Peace like my mum but knowing everything that went wrong with the system that was supposed to have helped her im finding it impossible at the moment. Knowing that if everything that was supposed to have happened and if the rest of my mums so called family had been there for her just a little bit of their time thats all especially when i got ill then my mum would have had a better quality life and might still be here if everything had been followed up with the medical side i,e mums Aricept medicine. I dont know what the future holds for me now as i now have to some how build a life for my self and at the moment im jobless. Was made redundant last January. I keep trying to hold my head up and keep positive but everything just seems so hard no time to grieve with panicking about finding a new job and getting completely well again.

 

[Tender Face]

Hello, Simonmonty. So pleased to see you posting, but appreciate what desperately difficult circumstances these have been for you. It’s great news about your health – but worries about returning to work won’t help your own healing ... have you had some advice and support on that? Rebuilding our lives can take some time – especially when you need to take special care of yourself .....

Don’t know about you – but I’m rather relieved (very selfish I know) that now my mum is at peace I have absolutely no need to deal with family that did nothing (except cause trouble and upset) and can move on without them ‘poking their noses in’ ..... the anger has gone (just about) ... sure, it’s taken some time ..... the grief ... well, I guess we just learn to live with it ... and slowly, it gets different ..... sure, I still have ‘bad hair days’ .... but this rollercoaster has slightly more gentle ‘ups and downs’ than those I – and you, as others - had to live with previously.

Please give yourself time, these are very early days .... and please keep posting.

Love, Karen, x

 

[simonmonty]

Hello Karen the oncologist is very happy with my progress and there is now no sign of the tumor in fact my vocal cords look perfect he said apart from my voice still gets horse especially in the mornings. I haven't had any real advise about returning to work and dealing with the after effects of treatment just to take things easy when i do. Its just the horrid side affects.tiredness and really bad itching. I break out in hives all over my body. I thought i had got away with out any real problems but they seem to have become worse but they are being treated. I think the tiredness is probably more to do with my not sleeping properly again with lots of things on my mind. Im taking sleeping pills zopiclone but i try not to take them too often as i dont want to become addicted to them and i find my self getting really depressed but again its probably more to do with whats happened and the worries of finding a new job. Yes it is a relief i can now have absolutely nothing to do with my nasty selfish sibling. I just want to forget them as they are now and remember them as when we were children as my mum use to say only remember the good times we had when we were kids the good days. Its strange how people can change as they grow older we use to be so close when we were growing up and would have all stood by our mum to the bitter end. But it seems peoples priorities change towards their loved ones as they go forward with their own life's. But im glad my attitude never changed towards my mum treated her the same as i always did. Mum never became a stranger to me or me to mum and i remembered what our mum did for us all the selfless sacrifices our mum made for her children raising us on her own. I really got to know my mum during her illness and became so very close more than i would have done if she had never become ill. We really were like a couple we went every were together did everything together. I have so many memories of us together happy and sad and they are all very special memories to me i will treasure forever. I just wish the other three siblings and her brothers and sisters could have shared in them and not acted the way they did. Just treated mum as mum and not like some stupid stranger. But until people start to understand more about this illness and how it affects people as individuals then things will never change. In this modern world you would think people had left behind the old fashioned way of treating people with dementia but sadly it seems not. I have been trying to post before but i seem to hit this block when it comes to my self and unfortunately i have problems with my Internet connection as i use a dongle and some times i loose my signal when im writing and loose the lot when i try posting it. Ive often asked for help and have given up when i suddenly loose the connection with my dongle. Thanks for replying to me Karen.... p.s I hope i dont loose this post when i post it thought it would be typical. Simon

 

[burfordthecat]

Hi Simonmonty

Lovely to see you posting again. I too am still learning to have a life without my lovely dad. I can really understand what you are saying when you say that you got to know your mum a lot better because of the illness. That's the way I was with my dad too. In the last few months of dad's life, the memories came thick and fast, both good and bad. I"m finding it is only now that I'm beginning to be able to properly deal with and think about those last fews months.

Very happy to read that you have won over your cancer. I hope that you will continue from strength to strength. There is just one more thing which you can do for your mum.......and that is to make the very most of your life and be happy. Something which every mother wants for their children.

It is very annoying when you lose a post, especially a long one Why don't you type into your word processor on your computer first. Then save it and if your connection/forum has any problem , you can just copy and paste and try again without having to re-type.

Love Carina x x

 

[Tender Face]

I haven't had any real advise about returning to work and dealing with the after effects of treatment just to take things easy when i do. Its just the horrid side affects.tiredness and really bad itching.

Hiya Simon. There is some help about returning to work after illness and/or caring (not usually combined ) (I'll PM you) IF that's what you are ready to do ... your GP should really be helping you and advising you ...

I know my hubby still suffers terrible tiredness 5 years since chemo and surgery ... we just accept that's how it is - and lucky he has been able to return to work where it involves nothing more than pushing a pen (Hope he doesn't read this one ...).

You have so much to think about - but so agree with Carina:

There is just one more thing which you can do for your mum.......and that is to make the very most of your life and be happy.

You take care (that's an order! ) and keep us up-to-date. You have coped under quite remarkable circumstances thusfar ... I am sure there is a bright future for YOU out there....

Love, Karen, x

 

[simonmonty]

Thanks Corina. i copy everything now before i post so if it goes wrong i just re paste it and don't loose it. Wish i had thought about this method before i would not be such an unhappy bunny as i was in the past. Karen thanks for the link i will give it a try. One thing i do need is a confidence boost were work is involved. I have the medical benefit services on my back now. know one ever gives you a chance. My doctor says only go back to work if i have to and if i do to take it easy. But im still grieving too and my head is still not sorted and since i work on building sites i wonder if im fit enough to still do that type of work. and the benefits agencies just want me back to work as soon as i can. But i think I'm ready to return to work now and to be truthful it would do me a lot of good mentally if i did. I want to start building a life for my self and to do that i need a job so i can stand on my own two feet. Am very independent were money is concerned and like to earn my own. So i will see what happens NEXT. Thanks simon xx

 

[marchbank]

hi simon i'm back too

i'm still on auto pilot and have a mental block. have been painting all of my house and just have the bathroom to do before i start filling my 3 greenhouses i sell plants in may, then i suppose i will start to be a gardener again because the sad thing is i can leave the house now coz meemaw has gone. i know how you feel about missing family who weren't on your journey and i know where you're coming from for me though i deal differently. i still have loved my long hard journey with my mum and i sadly miss it although it was so taking it's toll on me as for the family who missed the journey i think they are the ones who have missed out and personally i wouldn't like to be in their heads at a low point. as for people judging who cares what people say they haven't walked in our shoes and i defy anybody to judge. i at the moment because i don't have to race about have been reliving my past 20 years with flashes, some good some not but it is therapy and i need to do it because the sad fact is when i had mum and the kids to see to i blocked them. my journey, your journey and every dementia carers journey takes us to a dimention that people don't understand and i am done apologising or trying to explain why we are who we are our lives now are for living we have seen our loved ones away with grace and love and for that we should be proud. we should also be proud that after we are left alone that we should freak out coz we have a huge empty space to fill but i think we will all get there in the end, i'm sure of that. take care.

 

[simonmonty]

Its been a very surreal day today it being Mothers Day very hard at times but ive managed to cope. I put some flowers on the family grave and scattered some seeds some of her favorite flowers. Her ashes were scattered on her parents grave. I was going to go to the care home were my mum spent her final months. Its only across the road from the cemetery. I still go back there every week to see the other residents i have made friends with while my mum was there and spend time talking and making them laugh or just being there for them. But i just could not today. I think i would have started to cry in front of them not that i have been really able to cry since my mum passed on. Ive been feeling so proud of my mum especially today. Mum was so brave during her illness and im glad mum still had a good level of understanding at the very end. The illness didn't beat her that way. Though im the only one who really new that spending so much time with her and knowing her so well. Mum developed a good sense of humor during her illness and i always found ways of making her laugh and keeping her feeling positive. Mum always looked forward to us going out for our long drives with mums and my friend Ray and spending time with her ex daughter in law Kay and her my mums grand children. They were the only ones to stand by her during her illness and just saw mum as mum and not the dementia.

 

[florrie]

Hi Simon

I lost my Dad with Alzheimers last July. I feel the loss of him acutely and have (and still) go through all the emotions you describe. I know the best tribute I can pay to him and the way he lived his life and what he taught me, is to get on and live mine to the full in every way.

Through reading your posts I find a recurring theme and that is the distress caused to you by your siblings. I guess this has become a 'chatter' in your head. I know where you are with this. I have one sibling. We did the normal squabbling that siblings do when children but I thought that like every one else you left that behind and laughed about it when you grew up. We were never what you would describe as close but I had no idea he harboured pure hatred of me. It has manifested during Dad's final months in the most distressing ways and still continues. I know that when our mother has gone it will be a huge relief not to have to feel obliged to try my best with him. His verbal and physical aggression towards me has been a shock and I am trying to put the lid on that particular piece of 'chatter' which tends to start if I wake up during the night.

I guess, like me, this is a hurdle which is hindering you from moving on after your loss. I have searched my conscience over and over and dragged myself down with the pain of my brother's attitude towards me. My partner has watched this and being able to see the situation slightly from the outside assures me that I did nothing wrong. Friends tell me the same. Dad and I had a good relationship but it had to be worked hard for over the years. Dad was sometimes hard on me but never let me down. I didn't always grab hold of life the way he would have liked me to. We acknowledged our differences and grew in respect for each other. It was a honour to be there by his side through his decline. He was a joy in my life and his influence goes on through me to my sons.

Gradually I can see that my brother never developed an 'adult' relationship with our Dad. He never tackled the father- son relationship. He never saw the joy to be had in loving someone through the good and the bad. He ran away from the pain endured during the role of caring for a parent. It's not my problem, it is his. Perhaps your siblings have their heads in the same place and their jealousy over your love for your mother and your courage makes them defensive. They envy the relationship you forged with your Mum but will never admit to their own shortcomings so like me, you become the scapegoat for their guilty consciences. You are on a hiding to nothing. It is a sad comment on human nature that those who should have your best interests at heart will hit you when and where you are most vulnerable.

Several times while reading other posts I have noticed people have mentioned similar responses from siblings and family. If anyone else reads this I would be interested to hear of their experiences and anything they can say by way of explaining them. I refrained from opening up a new thread on the subject because it felt like a disloyalty to my family values and something my Dad would have hated. It also felt like a huge negative at a time when finding a way through bereavement was a priority. Perhaps discussing it would help me and Simon to find a way through this distress and put it behind us.

I would like to end this, Simon, by expressing my admiration for your compassion and courage. Also, I am pleased you are recovering your own health. It is time to put your energy into your life now which I am sure is what your Mum would have wished for you. Please take care of yourself.

with all best wishes

 

[simonmonty]

Hello Florrie. My favorite saying at the moment you can pick your friends but you carnt pick your family. My mum having Alzheimer's has taught me a lot. When someone close gets seriously ill it will do one of two things. Either it will bring out the best in people or it will bring out the worst in people.

 

[alfjess]

i start filling my 3 greenhouses i sell plants in may, then i suppose i will start to be a gardener again because the sad thing is i can leave the house now coz meemaw has gone. /QUOTE]
Hi Marchbank

Can you let me know when you have plants for sale.
We have a lot of banking to cultivate and any advice would be helpful.
Thanks
Alfjess