Help needed please

Jerryfishman

New member
Jul 2, 2018
7
0
Hi, this is my first post on any forum ever so please bear with me. My Dad was taken into hospital in May 2016 because Mum couldn’t cope anymore with no sleep, constant hallucinations and all the rest that goes with dementia.
Dad has been diagnosed with dementia with Lewy bodies.
This might sound really selfish but this post is for me.
My life has gone into meltdown. I cannot process what is happening to the closest person to me.
After many counselling sessions from various people I’m still unable to show any emotions except anger! The sadness is in me but won’t come out. I am normally a outgoing and confident person but feel like the life has been sucked out of me. My confidence is in the gutter which is affecting my work and marriage. I’m not taking care of myself and started drinking way too much. I’ve read many posts and I know I’m not alone but any information on how to handle this awful situation would be gratefully appreciated.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,002
0
72
Dundee
Hi @Jerryfishman and welcome to Talking Point. I'm so glad you have found the forum.

You don't sound at all selfish. There is an impact on everyone who has dementia in their lives and it is clear that you are suffering a very big impact.

I know you have had counselling but I wondered if you would find it helpful to talk things through with the one of the advisors on the Society's helpline. The opening hours are as follows-

Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

The telephone number is 0300 222 11 22

It's good that you have started to share how you feel here as there will always be someone around to listen and support you,
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hi, this is my first post on any forum ever so please bear with me. My Dad was taken into hospital in May 2016 because Mum couldn’t cope anymore with no sleep, constant hallucinations and all the rest that goes with dementia.
Dad has been diagnosed with dementia with Lewy bodies.
This might sound really selfish but this post is for me.
My life has gone into meltdown. I cannot process what is happening to the closest person to me.
After many counselling sessions from various people I’m still unable to show any emotions except anger! The sadness is in me but won’t come out. I am normally a outgoing and confident person but feel like the life has been sucked out of me. My confidence is in the gutter which is affecting my work and marriage. I’m not taking care of myself and started drinking way too much. I’ve read many posts and I know I’m not alone but any information on how to handle this awful situation would be gratefully appreciated.
Welcome to you. I am so sorry this is happening. There is energy in anger and sometimes it's a useful emotion in itself. I'm so sorry your confidence has gone, could you say more about that, if you don't mind. I think it affected my son's confidence too (My husband has dementia), and eventually he was able to tell me that it was partly the shame around dementia, partly the terror that he might inherit it ...). My own confidence went as well, I felt a kind of beggar in society and people's reactions to me telling them that my husband had dementia were just awful. I too ceased to be outgoing and just became a kind of whiteboard where other people wrote their lives. I don't know if this touches a chord with you. See what you think. I think feeling the life is sucked out of you is partly shock. I'm saying all this because it will pass, it will get better. We have to learn to live with the sadness as the kind of new normal but there are points when even that lifts for a while. Please keep posting. All the best, Geraldine aka Kindred.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Hello @Jerryfisherman and welcome to the forum.

As Izzy has directed do speak to someone in the helpline.

I joined the forum some 13 years ago when my husband was diagnosed with Alzheimer’s. The help, advice and information, not forgetting the support, I got from members on the forum far exceeded anything I received from the professionals we encountered on our 11 year journey with dementia. They knew all the theory but very little of what daily life was like for me as the Carer and my husband who had Alzheimer’s. The members here were the ones who listened to my problems, came up with ideas on how to deal with them and were always there to listen to my rants and raves when things seemed almost impossible.

So please post your questions and when needed let it all out, there is always someone there to listen and offer advice or just tell you how they dealt with a similar problem or just to say they have no suggestions but encourage you along.

There is nothing better than speaking to people who understand because they have experienced it first hand.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Jerryfishman
a warm welcome from me too
I'm sorry you feel so overwhelmed right now
the great value of this community is that there are generally quite a few members who will read a post and recognise the situation being described, so you are not alone in feeling the way you do
I wonder whether you are feeling 'anticipatory grief' - here's a link to an explanation
http://www.hospiceyukon.net/D_D_Anticipatory.html
and a link to a thread which discussed exactly this
https://forum.alzheimers.org.uk/showthread.php?85774-Anticipatory-Grief
now you've found us do keep posting - it helps to share your experiences
 

Jerryfishman

New member
Jul 2, 2018
7
0
Welcome to you. I am so sorry this is happening. There is energy in anger and sometimes it's a useful emotion in itself. I'm so sorry your confidence has gone, could you say more about that, if you don't mind. I think it affected my son's confidence too (My husband has dementia), and eventually he was able to tell me that it was partly the shame around dementia, partly the terror that he might inherit it ...). My own confidence went as well, I felt a kind of beggar in society and people's reactions to me telling them that my husband had dementia were just awful. I too ceased to be outgoing and just became a kind of whiteboard where other people wrote their lives. I don't know if this touches a chord with you. See what you think. I think feeling the life is sucked out of you is partly shock. I'm saying all this because it will pass, it will get better. We have to learn to live with the sadness as the kind of new normal but there are points when even that lifts for a while. Please keep posting. All the best, Geraldine aka Kindred.
Hi Geraldine,
Thanks for your reply. I think my confidence has gone due to the fact I feel helpless. I try to talk to people but unless they have experienced dementia first hand they can’t understand. There’s nothing I can do to bring even the smallest part of my Dad back. I now hate going to the care home as the good visits are far and few between. Dad doesn’t know me anymore but sometimes mentions my name. When I say “it’s me Dad”, it doesn’t sink in and that hurts. Have you any suggestions that could help please? I watch sad movies to try and force the sadness out but it’s not working. How can I learn to accept what is happening? A counsellor told me if I have a reaction to the situation (cry) that my feelings will change.
I called the helpline but it was up to a 48 hour callback so didn’t leave my number. I’ll do it today.
Thanks again.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
To survive this experience I think we have to become a bit detached. I certainly did a lot of crying when we were in the very stressful stage of my husband wandering and being brought back home by strangers and police. There was one two week period when I had ten different police in my house.

Once we got through that awful stage and John is well down the road and with limited mobility I feel more like his nurse than his wife. Mostly, not always, I can be dispassionate about our situation and when I do cry I am taken unawares by something to do with our earlier selves.

If you force emotional responses then they are not genuine and so you do what needs to be done and let your inner self respond when it is ready. Life has to go on.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hi Geraldine,
Thanks for your reply. I think my confidence has gone due to the fact I feel helpless. I try to talk to people but unless they have experienced dementia first hand they can’t understand. There’s nothing I can do to bring even the smallest part of my Dad back. I now hate going to the care home as the good visits are far and few between. Dad doesn’t know me anymore but sometimes mentions my name. When I say “it’s me Dad”, it doesn’t sink in and that hurts. Have you any suggestions that could help please? I watch sad movies to try and force the sadness out but it’s not working. How can I learn to accept what is happening? A counsellor told me if I have a reaction to the situation (cry) that my feelings will change.
I called the helpline but it was up to a 48 hour callback so didn’t leave my number. I’ll do it today.
Thanks again.
I know, you want to let the sadness out but it won't come, and you badly need a bit of relief. I do understand about confidence going because you feel helpless. There is so little we can do, if anything, to influence the situation, and we are used to having good influences on situations, of course we are. I'm not sure we can actually fully accept what is happening. How can we come to a position of acceptance of something so sad and outrageous? Asking too much of ourselves to find a permanent acceptance. I sometimes say to myself, my husband may not know me, but I know him, turn it round that way, make myself feel I have at least something to offer. I know it's so hard for you to visit. Go when you can. stand by your dad, that's a bit of what it's about - standing by someone. Touch his shoulders affectionately, he'll know someone is there for him. You need not stay long but you can feel a bit better about yourself for having stood by him. Puts you a little more in control, too. See what you think and thank you so much for replying Warmest, Geraldine, aka kindred
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi, this is my first post on any forum ever so please bear with me. My Dad was taken into hospital in May 2016 because Mum couldn’t cope anymore with no sleep, constant hallucinations and all the rest that goes with dementia.
Dad has been diagnosed with dementia with Lewy bodies.
This might sound really selfish but this post is for me.
My life has gone into meltdown. I cannot process what is happening to the closest person to me.
After many counselling sessions from various people I’m still unable to show any emotions except anger! The sadness is in me but won’t come out. I am normally a outgoing and confident person but feel like the life has been sucked out of me. My confidence is in the gutter which is affecting my work and marriage. I’m not taking care of myself and started drinking way too much. I’ve read many posts and I know I’m not alone but any information on how to handle this awful situation would be gratefully appreciated.

The life has been sucked out of me, Very apt description. I feel like I am not me anymore, the old me has gone. I don't even look like me anymore, I look like my mum, when did that happen. It is hard to process and I can't give you any advice as I am the same. I never cry, I just feel angry, fed up, worn out and very sad. Anger is not a good emotion, it eats away at us.

All I can see is this forum has helped me more than anything. It is a safe place and you can say whatever you need to here, which is what I do. It is hard and I have accepted it now and I have accepted that it will get worse.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi @Jerryfishman . A belated welcome to TP; I hope it benefits you as much as it does me. I totally agree that unless you have, or have had, a loved one with this hellish illness, you can't begin to understand what it's like and what it does to families. In my case it's my mum. She went into care in 2016 but I would say it's only this year I've accepted she has dementia and live the "new kind of normal" the good folk here have mentioned. I still feel angry; anger because she's been loving and caring all her life. Widowed at 39 having cared at home for my dad who died of MND and yet spent the rest of her life giving my brother and I a loving home. She is truly a good person. How she would hate being bed bound and reliant on others to do everything for her. Like you there are days I dont want to visit because I hate seeing her like that. Do you feel like dementia has taken over your life? I know I do. Oh how your comment about the life being sucked out of you hit a nerve with me. There's no joy, no laughter, no enjoyment in life is there. Ive gone to bed many a night praying I dont awake the next day. Depression and anxiety are a constant. BUT, with the support of this unique and wonderful forum, I have been handed a lifeline. What you are feeling is normal, not selfish at all. This truly is a family disease and often the families of PWD are suffering more than their loved one. I am in no way wishing to diminish the fear, confusion, anger that so many sufferers experience but mostly mum is in what seems to be a happy little "bubble" while Im in pieces inside. You have been given great advice from those who have already responded. There are now days when I come home from a visit knowing mum is receiving wonderful care, she appears to have no pain and I often leave her with a smile on her face. I have realised that as much as I wish she was dementia free, she's not but she's still my lovely mum and she's safe. Please keep coming back to TP. Rant and curse as much as you wish, ask questions, ask for help, share how you feel. Someone will always identify with you and you will never be judged. Please let TP become your lifeline too. Sending love and understanding x
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @Jerryfishman
just a thought about your dad calling your name but not recognising you are next to him - it may be that he is 'looking' for an earlier version of you - if in his head he has a child of eg 20 and you sit there at 50 (I pluck numbers at random) then he won't put the image and person together
the fact that he calls your name shows how much you are a part of his consciousness
whenever I visit my dad I always call out to him BEFORE he sees me 'Hello dad, it's shedrech, I've popped in for a chat' - that way he hears my voice and orientates himself to that before he sees this 'old person', it also gives him our relationship and my name
I go in expecting that he won't get me straight away, or at all, so when he does it's a joy - if he's not sure, he generally knows me as someone good for him and we often just share some companionable quiet
maybe if he says your name, respond saying something like '..... sounds like a lovely person, you must have fun with ...' or some prompt eg 'I'd love to know more about ...' and maybe he will talk of you with fondness (if he is able still to chat) or maybe he will smile, and that smile is for you
sorry if this doesn't help
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi @Jerryfishman . A belated welcome to TP; I hope it benefits you as much as it does me. I totally agree that unless you have, or have had, a loved one with this hellish illness, you can't begin to understand what it's like and what it does to families. In my case it's my mum. She went into care in 2016 but I would say it's only this year I've accepted she has dementia and live the "new kind of normal" the good folk here have mentioned. I still feel angry; anger because she's been loving and caring all her life. Widowed at 39 having cared at home for my dad who died of MND and yet spent the rest of her life giving my brother and I a loving home. She is truly a good person. How she would hate being bed bound and reliant on others to do everything for her. Like you there are days I dont want to visit because I hate seeing her like that. Do you feel like dementia has taken over your life? I know I do. Oh how your comment about the life being sucked out of you hit a nerve with me. There's no joy, no laughter, no enjoyment in life is there. Ive gone to bed many a night praying I dont awake the next day. Depression and anxiety are a constant. BUT, with the support of this unique and wonderful forum, I have been handed a lifeline. What you are feeling is normal, not selfish at all. This truly is a family disease and often the families of PWD are suffering more than their loved one. I am in no way wishing to diminish the fear, confusion, anger that so many sufferers experience but mostly mum is in what seems to be a happy little "bubble" while Im in pieces inside. You have been given great advice from those who have already responded. There are now days when I come home from a visit knowing mum is receiving wonderful care, she appears to have no pain and I often leave her with a smile on her face. I have realised that as much as I wish she was dementia free, she's not but she's still my lovely mum and she's safe. Please keep coming back to TP. Rant and curse as much as you wish, ask questions, ask for help, share how you feel. Someone will always identify with you and you will never be judged. Please let TP become your lifeline too. Sending love and understanding x

Yes you have that right Jezzer. I can't think of any other illness that affects the carers well being in and health and has such a huge impact on their life and peace of mind while the person who has the disease appears to be completely unaffected by it all. It does not make sense.

I have a very ill dad who does not know he is ill and he is as 'happy as Larry' while I am completely frazzled, worn out, probably depressed, angry for being put in this position, sad for my dad who is incredibly optimistic and busy making all sorts of plans for his future while I am just hoping that he will pass away in his sleep before his illness catches up with him and causes him pain.

There is nothing normal about this life. Everything I do is for my dad and he doesn't even know it. It is soul destroying and very boring. Mostly I feel physically, mentally and emotionally drained whereas dad is fine, he can do anything that he wants to and there is absolutely nothing wrong with him.
 

Jerryfishman

New member
Jul 2, 2018
7
0
hi @Jerryfishman
just a thought about your dad calling your name but not recognising you are next to him - it may be that he is 'looking' for an earlier version of you - if in his head he has a child of eg 20 and you sit there at 50 (I pluck numbers at random) then he won't put the image and person together
the fact that he calls your name shows how much you are a part of his consciousness
whenever I visit my dad I always call out to him BEFORE he sees me 'Hello dad, it's shedrech, I've popped in for a chat' - that way he hears my voice and orientates himself to that before he sees this 'old person', it also gives him our relationship and my name
I go in expecting that he won't get me straight away, or at all, so when he does it's a joy - if he's not sure, he generally knows me as someone good for him and we often just share some companionable quiet
maybe if he says your name, respond saying something like '..... sounds like a lovely person, you must have fun with ...' or some prompt eg 'I'd love to know more about ...' and maybe he will talk of you with fondness (if he is able still to chat) or maybe he will smile, and that smile is for you
sorry if this doesn't help
Hi, just a short reply to say how amazing this forum is.
I read all your replies with tears streaming down my face. This has helped more in 3 days than dozens of counselling sessions. I hope my confidence will return along with the zest for life. Your reply was very helpful. I’m going to see Dad now. Let’s hope it’s a good visit
Cheers
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Yes you have that right Jezzer. I can't think of any other illness that affects the carers well being in and health and has such a huge impact on their life and peace of mind while the person who has the disease appears to be completely unaffected by it all. It does not make sense.

I have a very ill dad who does not know he is ill and he is as 'happy as Larry' while I am completely frazzled, worn out, probably depressed, angry for being put in this position, sad for my dad who is incredibly optimistic and busy making all sorts of plans for his future while I am just hoping that he will pass away in his sleep before his illness catches up with him and causes him pain.

There is nothing normal about this life. Everything I do is for my dad and he doesn't even know it. It is soul destroying and very boring. Mostly I feel physically, mentally and emotionally drained whereas dad is fine, he can do anything that he wants to and there is absolutely nothing wrong with him.
Hi @Duggies-girl It's a terrible limbo isn't it? I am no expert by any means but I think you are very likely suffering with depression. It would be a miracle if you weren't! I know it's not for everyone but I wonder if you might benefit from a course of anti-depressants? No, they won't change your situation but they could help. Are you eating properly? Do you have family who could support you? I'm sorry, I don't mean to fire questions at you but you sound like you're dealing with this alone? I really think the first thing is to see your GP and get checked over. I'm here for you. Outsiders haven't a clue what this is like do they? Love and Hugs xx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi, just a short reply to say how amazing this forum is.
I read all your replies with tears streaming down my face. This has helped more in 3 days than dozens of counselling sessions. I hope my confidence will return along with the zest for life. Your reply was very helpful. I’m going to see Dad now. Let’s hope it’s a good visit
Cheers
Wishing you a good visit. Let those tears flow - it's a little release from the pain. Keep us posted x
 

Jerryfishman

New member
Jul 2, 2018
7
0
Hi @Duggies-girl It's a terrible limbo isn't it? I am no expert by any means but I think you are very likely suffering with depression. It would be a miracle if you weren't! I know it's not for everyone but I wonder if you might benefit from a course of anti-depressants? No, they won't change your situation but they could help. Are you eating properly? Do you have family who could support you? I'm sorry, I don't mean to fire questions at you but you sound like you're dealing with this alone? I really think the first thing is to see your GP and get checked over. I'm here for you. Outsiders haven't a clue what this is like do they? Love and Hugs xx
Hi, I’ve seen my GP and she was reluctant to prescribe medication. She suggested this forum as first point of call. I know that I’m massively depressed as i can’t function properly or remember simple things. I have messes in every room in the house which I keep saying “I’ll sort it tomorrow”!
I get in the car to go somewhere where I’ve been a thousand times and completely go the wrong way or forget why I’m in the car at all. Is this normal?
My Dad’s dementia is consuming my life and this is just the beginning really. I do like the honesty in people’s posts. There is no holding back.
My Mum is a broken woman. After 56 years of marriage she is not dealing with it very well. She is always close to tears when Dad is mentioned and cries herself to sleep every night.
I have a younger sister (46 I’m 49). She is taking anti depressants which has helped I think. And I’ve never eaten so many takeaways in my life!!
Again many thanks
Jerryfishman
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Hi Geraldine,
Thanks for your reply. I think my confidence has gone due to the fact I feel helpless. I try to talk to people but unless they have experienced dementia first hand they can’t understand. There’s nothing I can do to bring even the smallest part of my Dad back. I now hate going to the care home as the good visits are far and few between. Dad doesn’t know me anymore but sometimes mentions my name. When I say “it’s me Dad”, it doesn’t sink in and that hurts. Have you any suggestions that could help please? I watch sad movies to try and force the sadness out but it’s not working. How can I learn to accept what is happening? A counsellor told me if I have a reaction to the situation (cry) that my feelings will change.
I called the helpline but it was up to a 48 hour callback so didn’t leave my number. I’ll do it today.
Thanks again.

You are helpless - we are all helpless.

I was thrown into my situation savagely at the beginning of last year. I am 24/7 sole carer with no respite, for my partner who has dementia and other health issues. A really horrid illness kept him in hospital for 6 weeks and meant major life changing surgery. The dementia had advanced rapidly during his illness.

I had just 2 days notice that he was coming home - he could not care for himself.

In the space of that two days I had to close my small business down ( and it was the only one of its kind in the country) and stay at home.

I am angry too, so angry and cheated.

And I think that is how you feel. I lost my lover, my partner, my business, and my career at one fell swoop.

Eighteen months later, I am still angry, and cheated, and disappointed that our lives will never be the same.

Please, I know it is hard, very hard. But try to pretend that your Dad has gone somewhere else, this man, is not now the Dad you love, he is someone else. Because this horrible disease has taken your Dad away and put someone else in his place. I try to do that with my partner - it's not nice, it's not the same, but I am becoming to love this strange person I now live with, in a different way.

This dementia has so many victims, and not just the people with the disease. I would not wish it on anyone.

Try to find something good in each day - no matter how small. It has taken me 18 months to get to where I am now, and I have still a way to go before I have come to terms with what has happened.

You will get there, it will take time, don't be hard on yourself. Remember the good times with Dad. Emotions like anger, feeling cheated etc are powerful, but destructive, and you and I both, need to work our way out of them

It will happen - eventually
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi, I’ve seen my GP and she was reluctant to prescribe medication. She suggested this forum as first point of call. I know that I’m massively depressed as i can’t function properly or remember simple things. I have messes in every room in the house which I keep saying “I’ll sort it tomorrow”!
I get in the car to go somewhere where I’ve been a thousand times and completely go the wrong way or forget why I’m in the car at all. Is this normal?
My Dad’s dementia is consuming my life and this is just the beginning really. I do like the honesty in people’s posts. There is no holding back.
My Mum is a broken woman. After 56 years of marriage she is not dealing with it very well. She is always close to tears when Dad is mentioned a ynd cries herself to sleep every night.
I have a younger sister (46 I’m 49). She is taking anti depressants which has helped I think. And I’ve never eaten so many takeaways in my life!!
Again many thanks
Jerryfishman
Hi Jerry - my post about seeing the GP etc was actually intended for @Duggies-girl but no problem - it could just as well have been intended for you ;). I have frequently driven somewhere else although my car should be able to drive itself to the Care Home by now! I'm genuinely impressed your GP suggested TP; great to know some professionals are aware of the forum and its benefits. Depression & stress plays havoc with us and stuff we'd normally breeze through can seem like attempting to climb Mount Everest. Please dont add to your pressure by worrying about things you havent got around to: you have enough on your plate. Try and cut yourself some slack - you are going through a very traumatic time and I would imagine you are also worrying about your poor mum. You're doing well (yes, honestly!) and whilst I cant stand the song(!) try and take things one day at a time. Take care x
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi @Duggies-girl It's a terrible limbo isn't it? I am no expert by any means but I think you are very likely suffering with depression. It would be a miracle if you weren't! I know it's not for everyone but I wonder if you might benefit from a course of anti-depressants? No, they won't change your situation but they could help. Are you eating properly? Do you have family who could support you? I'm sorry, I don't mean to fire questions at you but you sound like you're dealing with this alone? I really think the first thing is to see your GP and get checked over. I'm here for you. Outsiders haven't a clue what this is like do they? Love and Hugs xx


No they haven't a clue. Funny thing is everyone asks 'hows your dad' rarely does anyone ask 'how are you'

Yes I am probably depressed, i am certainly fed up. Dad is still living on his own in his own place and I am glad of that. I was going to put him in a care home but that was at the same time as we found he had cancer so I decided that whatever time he has left I will keep him at home, it is what he would want. He is quiet happy.

I am lucky in a way as my dad is still my old dad, still kind and thoughtful but just incapable of looking after himself. He has oesophageal cancer so eating is a problem, I have to encourage him to eat and also be very careful about what he eats as he has a stent that he has forgotten about. It just becomes very wearing after a time but dad is terminal so there will be an end to this sometime, probably sooner than later because he is on palliative care only. He has forgotten that too and thinks he is all better now and I am not going to keep reminding him. It is all very sad and I also have huge guilt because I want him to pass away before he suffers although I know this is a perfectly acceptable thing to wish for. He would wish for it himself if he had not forgotten.

GP I am not sure but I will think about it. What I think I need is a couple of days off in a hotel by the coast, by myself just to look at the sea and unwind. Fish and chips and a cup of tea in different surroundings. I did this in March when my husband looked after dad for me and it was wonderful. I went on my own and it really recharged my batteries but my husband has been ill since then so I don't want to put too much on him at the moment.

Thank you for the kind thoughts Jezzer but I do have an end in sight although it is going to get a lot worse before it gets better I know that much.
 

kindred

Registered User
Apr 8, 2018
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Hi @Jerryfishman . A belated welcome to TP; I hope it benefits you as much as it does me. I totally agree that unless you have, or have had, a loved one with this hellish illness, you can't begin to understand what it's like and what it does to families. In my case it's my mum. She went into care in 2016 but I would say it's only this year I've accepted she has dementia and live the "new kind of normal" the good folk here have mentioned. I still feel angry; anger because she's been loving and caring all her life. Widowed at 39 having cared at home for my dad who died of MND and yet spent the rest of her life giving my brother and I a loving home. She is truly a good person. How she would hate being bed bound and reliant on others to do everything for her. Like you there are days I dont want to visit because I hate seeing her like that. Do you feel like dementia has taken over your life? I know I do. Oh how your comment about the life being sucked out of you hit a nerve with me. There's no joy, no laughter, no enjoyment in life is there. Ive gone to bed many a night praying I dont awake the next day. Depression and anxiety are a constant. BUT, with the support of this unique and wonderful forum, I have been handed a lifeline. What you are feeling is normal, not selfish at all. This truly is a family disease and often the families of PWD are suffering more than their loved one. I am in no way wishing to diminish the fear, confusion, anger that so many sufferers experience but mostly mum is in what seems to be a happy little "bubble" while Im in pieces inside. You have been given great advice from those who have already responded. There are now days when I come home from a visit knowing mum is receiving wonderful care, she appears to have no pain and I often leave her with a smile on her face. I have realised that as much as I wish she was dementia free, she's not but she's still my lovely mum and she's safe. Please keep coming back to TP. Rant and curse as much as you wish, ask questions, ask for help, share how you feel. Someone will always identify with you and you will never be judged. Please let TP become your lifeline too. Sending love and understanding x
Jan, what an incredible post this is, helping me too and I am sure so many others. I find waking up in the morning and getting on with things is awful. I feel cold with fear sometimes. Gxxxxwith great thanks.
 

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