View Full Version : I told Mum I want nothing further to do with her.
My mum has stroke-induced dementia and it is getting rapidly worse. I know she's been worried because my dad has been in hospital so she's had extra strain on her, but she has become impossible to be with. Her memory is dreadful. She asks the same question over and over. It is very wearing. Her conversation is disjointed and she gets angry when you can't follow it. Dad took her to the doc who arranged an apt. at the Memory Clinic for her. She is flatly refusing to go and has developed a disturbing paranoia that dad and I are "conspiring" against her.
Dad was at his wits end with her today and asked me to talk to her. He's still not at all well. She wasn't making sense and was really nasty with me. She told me it was no business of mine and to stop interfering. In the end I told her I wanted nothing further to do with her.
I phoned a couple of hours later and spoke to dad. I apologised. He says the only way he can deal with her is silence. It's becoming a very lonely life for him just as he needs her most. She's acting like a spoilt child who's thrown its toys out of the pram. Everything has to be what she wants or she has what can only be described as a tantrum. She won't do anything for him and he now buys in his meals. I've talked to her before about her diet because she is flatly refusing to eat sensibly - she exists on bananas and grapes.
I am finding it really hard to find anything in me to respond to her with. She lost her own baby at 5 days old and later adopted me, but she was never there for me. I was raised by dad and a next door neighbour. So really she never has been my mother. I feel really guilty for saying I want nothing more to do with her, but in my heart I mean it. I don't know how to deal with her and help her. The thought that this could go on for years and become worse makes me feel numb, shut down. She's not interested in how difficult things are for me with agrophobia and panic attacks. She just demands attention and errands that leave me weak and drained.
They say dementia doesn't alter character, it just brings out the truth. Her own mother suffered dementia and became really vicious and spiteful towards us in her last years. I've had to take extra medication today because of mum. I am unable to cope with her the way I feel unless I can develop coping strategies.
Maybe this is just a rant, but maybe someone can give me some idea of how to manage this. I'd appreciate any suggestions.
Hi,
I feel for you. Parents are not easy! My mum was very difficult for many years. She didn't have dementia - that makes things almost impossible I think - but she was quite unpleasant to me a lot of the time.
I am one of four children but the others are scattered all over the globe - Australia, America, France. I was the only one left to take care of her. Although she didn't need full time care, she rarely left the house and she depended on me for most things. I would see her at least once a day and do what I could for her.
The last six months of her life however, she changed. She knew she didn't have long and she reverted back to being the lovely person she had been most of her life. I really missed her when she died and I still do.
I know this doesn't help you much but I am so glad I had that time with my mum and I wasn't left with remembering the horribleness mainly because I would have felt so guilty when she died about not liking her much.
I feel for you and I hope it works out. x
Desprate Dan
20-11-09, 05:00
Maddie, sorry i cant help but my thoughts are with you are your poor Dad, you must say strong for your fathers sake he needs you more than ever now.. I only wish i could do something to help Maddie..
Please take care
Dan x
Thanks Jac and Dan.
I am trying to help dad and tolerate mum for his sake. It's so hard. She destroys my self-esteem, causes me to have panic attacks, makes me worry, feel guilty, sad ... the list goes on. I'm dreading what's coming, especially now she is becoming paranoid, as I think she will end up in care. She'll be vicious to visit and that will destroy my dad after 60 years marriage.
I have a sister who only lives 30 mis. away. She came one day when dad was in hospital. She was with mum 4 hours, then rang to say she couldn't take any more, she was going home to bed as mum had made her head ache. She won't come anymore. She didn't even visit dad when he was in hospital last week. So I guess I also feel a lot of anger and resentment about her as well.
Altogether, I don't like the feelings going through me at the moment.
Thanks tetley - we just posted at the same time!
hi maddie
firstly i would like to say i know what alzheimers/ dementia feels like my father was diagnosed at 70 he is now 78 so we have had 8 years of progression with this illness so i do empathise with you.
dementia / alzheimers DOES alter the persons character they become totally different to how they were . there is help out there i would suggest you contact the alzheimers society they have a web site with lots of help and advice
more importantly you need some support too i know its hell on earth for the family we have had 8 years and it has been hard work for all of us
please pm me if you need to talk dont bottle it all up
love sam xxx
mandyclare
20-11-09, 13:03
Hi Maddie...
I really feel for you but I don't think your mum is doing alot of what she does on purpose. I'm not saying she is a Saint either though so please don't get me wrong.
My dad had a stroke in his 40s which left him ok but very confused alot of the time and unable to work etc.... he would do really irritating things.. get obssesive about particular things.. like for example squashing all tin cans (sounds funny now with recycling etc) but at the time it drove us nuts..
When people have these sorts of disorders the simplest thing becomes very important to them.. it becomes their way of gaining some control of their life. Frustration is a major problem to them because they know what they want to say but can't get it out in the way they did before, this makes them frustrated, irritable and angry and you know how it is we always hurt the ones we love the most.
My dad only passed away 3 years ago at the age of 77.. about 35 years after having his stroke. He drove us all insane at times but we loved him all the same and made the most of the fact that he was still with us and could enjoy his life in the ways he was able. Over the years I gained a huge amount of respect for him.. his will to enjoy life despite his limitations and I learnt that we had to realise that certain things that seemed bizarre to us had now become an important part of his routine.. it was necessary for him to keep a certain amount of control in any ways he found possible.
In many ways when my dad had his stroke we lost the dad (and husband) we knew and a new person came into our lives.. he was very different but ultimately he was still our dad.
This is a really hard transition for you and i'm not claiming to understand your mums condition as there are obviously differences but maybe it will get easier in time.
Remember to make time to take care of yourself.. we all need a break from the physical and emotional stress that situations like this cause us.
Love of love
Mand x
Hi Maddie, *pounce*
Sweetheart, I am so sorry that things are becoming so much more difficult and hard for you and your father, if I could take this all away, then I would. Please never forget about the ongoing support you have here, from everyone, at NMP.
I think sammie's suggestion of maybe finding an alzheimers organisation, may be very helpful, I am pretty sure that there will be really fantastic organisations who will be able to help all the people involved in the situation, for example, there may be talking sessions with people from the organisation, which might be able to help relieviate the feelings that you and your father are feeling, it can be so beneficial to talk to people who know/have been affected by the similar situations.
If you need any help sweetie, please just ask, we are all here for you.
Lots of love, hugs and support,
Chrissy xXx
Thanks mandyclaire and chrissy xxx
I am going to find a local organisation to talk to if I can. The doc wants to see mum again. She walked to the local shop today for bananas and came back with tuna. My dad is very low. He's really worried what will happen to her if he can't look after her.
gtrgrl3369
20-11-09, 17:07
Hi Maddie..please believe that having demetia does change a persons personality and most of the time they act that way because they are scared. Try and imagine what it would be like to know that your mind is turning on you and there is nothing you can do to change it. Its kind of like having anxiety, but we can change what is wrong and find ways to deal with the symptoms, she can not. Your mom does need some supervised care it sounds like. Taking care of someone in your mothers condition is very tiring and draining. I do feel for you because it is hard to be around someone who behaves like that when you have your own issues going on. It might be time to get some help for her to relieve the pressure of you and your father. Take care honey, this is a hard road for you.
Hi Maddie
Sorry to read of the difficulties you and your Dad are experiencing - I can relate to a lot of what you said as my own Mum has a form of alcoholic dementia and its very draining mentally and physcially on us. I wish there was something else I could do to help ya - Speaking to some sort of support team would be a good idea - Get the doc more involved - if you need a chat to rant or offload - U know how to find me. We are all here for you night or day
Take Care - Dee xx :hugs:
Hello Maddie,
What a difficult situation for you and your father to be in. None of us would like to be in this position and my heart goes out to you both. Your mum is also in a place where no one would like to be. Have you contacted your social services for some support and advice from them? I have a relative with stroke induced dementia and she attends a day centre two days a week. She gets picked up and dropped home. It also gives her family some respite. It is an impossible situation but you need to get some help and look after yourself. Please contact social services.
Take care
Myra:hugs:x
Myra, thanks for replying. Unfortunately, they can't receive any help from Social Services in this area as Dad saved all his working life and now has more than the threshold amount.
eternally optimistic
20-11-09, 19:27
Hi
I am sorry to hear your news regarding your parents, it must be a very very hard time for you.
Dementia is a very cruel illness and very difficult to cope with.
I hope you can get some local support for all three of you and you will probably welcome some, if available.
Good luck for the future and I empathise with your situation as I have experienced a family member with dementia and the things that go with it.
Big hug.
bottleblond
20-11-09, 19:33
Dementia is such a cruel disease.
My gran had dementia and watching her go from a very proud, propper, lovely lady to someone at times who was so hard to make any sense of was heart breaking!
I do believe it alters their personality because they can get so frustrated and angry because the are so easily confused and find even the basic things such as memory and hygene difficult to fathom.
It is very difficult for loved ones because they are watching their relative turn into a completely different person before their eyes and can do nothing to change that.
I haven't read all the replies to this thread so don't know if anyone has mentioned the 'dementia support groups'?
If you google that, it will give you contact information for somewhere nearby.
Thinking of you
Lisa
xxxx
:bighug1:
Veronica H
20-11-09, 21:14
:bighug1:just wanted to send a hug to you Maddie. I hope things settle down soon.
Veronicax
Hi Maddie, I am so sorry to hear about your Mum, i have been working with Dementia patients for nearly 30 years and it can be devastating for all thos einvolved. There are several different types of dementia , some progress quicker than others and manifest is slightly different ways including paranoia and fear. Many inthe beginning realise something is not quite right and this is a scary place to be as amidst the lucid moments of clarity there are huge lapses in short term memory and as us anxiety sufferers well know fear can cause us to either want to run from people and hide or become angry and aggressive to those closest to us.
Dementia though need not all be doom and gloom, for the past 5 years i have managed a dementia wing in a nuring home and yes we have some difficult and sad moments but we always have a lot of laughs and fun too. We involve family members and in the beginning they started at confused, scared and unsure of everything like your family are at the moment.
You need support and advice, your Mum needs referral to the elderly mental health team, a good CPN with a understanding of all Dementias and then carers who are trained in the person centred care approach to this illness. At the moment you are all reacting this way due to fear and the unknown. The Alzheimers Society is a good place to start but then your Mums GP can arrange referral and a good Social worker can arrange maybe a short respite stay for your Mum if they feel this is necessary. With the right care, advice and approach things will improve for you all so you can come to terms with the future changes the illness itself will bring. Love to you all, Carol x
Thank you everyone. Carol, I have read all I can and it seems mum has multi-infarct dementia. Her diet is very poor. Dad was taking her out most days to restaurants for lunch just to make sure she ate, but he can no longer do that. She used to walk every day, but has stopped that too. Despite all our explanations and encouragement, she will now not eat properly or exercise. The doctor is aware, but without her co-operation nothing can be done to help her. As I said at the start of this thread, she has refused to go to the Memory Clinic. I understand this might be due to fear, but she will not talk about how she is feeling or what she is worried about. She's cut us all out. There is absolutely no way she would participate in an assessment or accept help from anyone like the Altzheimer's Society. Nor would she let carers into her home. Her rational, lucid periods are very rapidly becoming shorter and longer apart. She is in total denial that anything is wrong. Dad is becoming more skeletal daily. He's so worried what will happen to her. They live in a large bungalow. Dad is desperate to move as it is beyond him to manage it now. We took mum to see smaller bungalows and retirement flats, but she flatly refused to consider either. I think she knows that she couldn't function if she was moved from her current environment. But she's not managing there now. I found her looking for chops to cook for tea last week. They were already in the oven. Dad asked her not to use the toasted sandwich maker as he thought she'd burn her fingers, so she put a tuna sandwich in the ordinary toaster. She's becoming a risk to herself and him. How far do we let this get before we can insist on her having help? It will destroy dad if she has to be sectioned to a home. From my nursing experience, I know that he does not have long left. After 60 years, it is such a tragedy that their lives together should end like this.
Sweet Maddie:hugs:
I'm Sorry but I didn't look round the board yesterday so I'm sorry I missed your thread.:hugs:
As you know, I've cared for my wife for the past 19 years with her paranoia and irrational thoughts/questions etc so I feel I have a good idea as to how you and your Dad must be feeling, even though I realise your Mum's illness isn't the same as my wifes.
What Carol says makes perfect sense to me and she should know as she's worked in the field for so long.....
You need support and advice, your Mum needs referral to the elderly mental health team, a good CPN with a understanding of all Dementias and then carers who are trained in the person centred care approach to this illness.
This is really how I got started. For the first 5 years I had absolutely no support from anyone except our dctor and my wifes psychiatrist but no help whatsoever in the home. My wife was at home alone while I was working full time and during this time her paranoia was far worse than it is now. She would often either ring me at work telling me that neighbours were saying things against her or the boiler was talking to her etc. When I got home I was bombarded with irrational questions and paranoia directed at me together with having to cook and do the house chores etc. I just wanted to walk out but I couldn't so I'd lock myself in the bathroom.
I found that if I tried to rationalise her thoughts for her it just added fuel on to the fire so her questions would just continue. My solution was therefore to use silence and let her sort her thoughts out for herself because otherwise I got myself completely stressed out for no reason because whatever I said had no effect. She would always eventually come round on her own.
The hardest part though was the paranoid accusations accusing me of being "someone else", of working in another profession and wanting to harm her. It was very hurtful but I tried to remind myself it wasn't her talking- it was her illness. She would often ask me why I was upset and in tears because she would completely forget what she had said while she was ill. She had no idea what she was saying or any awareness as to the effect her words had on me.
I had to really fight the system until we got hold of a cpn. Once we had the cpn, we were then able to get hold of befrienders until now we have helpers who social services fund through a scheme called direct payments. This scheme has been of huge benefit to both my wife and myself because now the helpers get the questions which gives me a break!
I'm only saying the above so you have some idea of the things I've had to cope with.
Regarding your Dad, sometimes our heads must rule our hearts...
She's becoming a risk to herself and him.
If she is becoming a danger to herself and your Dad, and he feels he cannot cope, for their own safety, something needs to be sorted or provided. If I were in your situation, I would tell the doctor everything that's happening and raise all the concerns you have so they realise the seriousness of the situation. The last thing you or your Dad would want is for any harm to come to either of them so he needs to understand that safety must come first.
I realise how extremely difficult things must be for you and your Dad but my view is you really need to lay everything on the table with the doctor with you and your Dad present to help him accept how bad things have become. If they feel the only option is 24hr care, your Dad can still visit every day but maybe with his illness on top they can find another arrangement so that enough support can be provided in their home. Something has to be sorted though Maddie because you and your Dad can't go on like this especially if harm could result to either of them. You could also become very ill with the stress yourself. I've been there and in some ways I'm still there so for everyone's sake, I honestly feel the doctor really needs told everything so that they can put something in place to ease the situation.
Hope that's of some help Sweet Maddie. I Really feel for you.:bighug1::bighug1::bighug1:
Thanks Bill. I have talked to our doctor today because of Mum refusing to go to the Memory clinic. He says she should go to see him again, but how do we get her there? Dad's going to request a home visit for himself and try to get her to talk to the doc then. I know dad needs to accept the realities and dangers of what's happening, but he's so ill and sad I am loathe to worry him more. Like you, he's using silence to cope at the moment and, as he is ill, he's retreating to his bed. It's all happening so fast. I know I should take responsibility, so I have emailed our local Alzheimer's Society tonight. There is no way mum will accept dad or me bringing carers in. Perhaps the doc or the AS will be able to persuade her, but I doubt it.
By the way - I saw an Advocate for myself today (mentioned to you on another thread). It was really beneficial. He said I should be receiving more support for myself and more benefits. He's writing on my behalf to arrange it all.
http://www.actionforadvocacy.org.uk/index.jsp Try it!
If it's possible, I think I'd ask the advocate for a copy of the letter so you could present it to your doctor to help you push for the help you need. I've always found that when we really need something, we have to make alot of noise before they listen!
If your Mum can't be persuaded and your Dad is too ill, "I" would really have a go at the doctor saying something Has to be done urgently because they are both at risk.
I know it must a very difficult situation for you but "my" conscience would be clear if I pushed because in my mind, their safety would be my priority so I'd feel I'd be acting in their own interests.
Sometimes my mother says to me she feels ill but won't trouble the doctor so I immediately contact him myself and get him to ring her or go round to see her so that she'll helps herself. I know that wouldn't work with your Mum but it wouldn't stop me pushing the doctor until the help is provided whether your parents like it or not. In my mind, their safety would be my priority so I wouldn't stop pushing the doctor until something was done to help them.:bighug1:
The Advocate writes the letters, then lets me see them before they are sent to everyone we decide, including the doctor.
I did express my concerns about mum amd dad to the doc today. I'm so torn between wanting to kep them safe and hoping the end will come quickly for them. Does that sound awful? I don't want my dad lying in pain from cancer, worrrying about mum. I don't want her frightened and losing her mind, yet I don't want to take away what little dignity she has left by overriding what she decides just yet.
I feel the best option at present maybe to push for more help in the home. Just enough to ease things. As you say, a time may come later when your Dad will be too ill at which point I think his mind would rest easier if he knew she was in safe hands but for now if you think they'll be ok as they are with more support then push for what the advocate feels you need that should be being provided and see how things go but make sure you keep pushing until you feel your mind can rest easier.:bighug1:
eternally optimistic
23-11-09, 14:47
Hi Maddie
Have been reading recent updates on your post and truly hope you are OK, or as well as possible.
I am sending you
http://t0.gstatic.com/images?q=tbn:jjOUR-QKll9pIM:http://www.chocosho.com/admin/images/380x285/80182_1_big_hug_b.jpg (http://images.google.co.uk/imgres?imgurl=http://www.chocosho.com/admin/images/380x285/80182_1_big_hug_b.jpg&imgrefurl=http://www.chocosho.com/lifestyle_cards.asp&usg=__4n3s7X50DL8XVLcosy9BqRqQdTI=&h=760&w=570&sz=26&hl=en&start=6&tbnid=jjOUR-QKll9pIM:&tbnh=142&tbnw=107&prev=/images%3Fq%3Dbig%2Bhug%26gbv%3D2%26hl%3Den%26sa%3D X) Am thinking of you.
Thanks Jay ann. Mum should have gone to the Memory Clinic today. Instead, I am taking her back to the doctor's as she has a urine infection, but I've spoken to him and he will try to assess her as well. I've been in touch with the Carers Support worker of our local Alzheimer's Society. I have to talk to Dad now about their suggestion that help goes in on his behalf.
All hugs gratefully received!
Maddie
Sammie's right - my grandma became a total stranger to us and became almost child like eventually. Fortunately she didn't realise what was happening to her towards the end. The one's I feel sorry for are the carers. If your mum won't accept she has a problem it's probably because she is totally unaware that she is any different. If she refuses to get medical help (which is a shame) the there is nothing to stop you and your dad getting support before it makes you resent her. Try and really remember the good things that your mum was to you before she became ill - this is an illness that takes over the whole person's character. It isn't her fault. Be strong for your dad - I know it can be very frustrating but remember he is living with it.
Hello Maddie,
I really feel for you too. My dad had dementia in the last few months of his life, he wasnt horrible or anything could be a bit moody but it was very very sad especially when some days he wouldnt remember things and it would so frighten him and break our hearts in two to see him suffering so...He has now passed but I think about my lovely dad everyday. My heart goes out to your dad, you will have to give him support as I did my mum. Goodluck to you all for the future try to take each day as it comes, your mum doesnt mean to be like that to you its just the illness take care xx
eternally optimistic
23-11-09, 22:56
Well done Maddie,
I am sure Alzheimers Society will give you loads of practical support.
I know my local society runs lots of things, both for carers and sufferers.
Use them to the hilt, if it helps you.
I hope you have a good GP, that makes all the difference, that will listen to you.
Dont be afraid to push them for lots of assistance, its sometimes the case of getting on the right path.
It might be worth it, time permitting, going along to a carers meeting to help you realise you're not alone.
Best wishes.
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