Don't know what to do.

Hello

My Mum has not got a Dementia diagnosis, nor any other diagnosed serious illness at this precise time, but at 86 years old it’s an inevitability that she worst will happen sooner rather than later.

I’ve “lost” my Mum though already, and the strain has led me to experience signs of a breakdown and I’ve self-harmed as I’m already coping badly with a previous bereavement.

My Mum says the most hurtful things to me but with my other siblings will act OK Things that are cutting, make my blood run cold and are things that once said can’t be unheard. I think is it down to illness/old age etc, but then I think how can it be because only I witness this and it’s only me it’s said to. Surely if it was due to illness she’d display this behaviour to all three of us?

I felt a disconnect between us shortly after my own loss and confided this to the Samaritans and my prediction of our relationship has sadly turned into reality.

I’ve lost everything really, my Husband to illness, My Mum relationship-wise and I don’t know what to do about my Mum’s emotional state which is deteriorating badly and rapidly. She refuses help from family and GP services.

I don’t really know what I’m asking but it’s tearing me to bits seeing my Mum deterioate after all these years when she should be having a cosetted and stressless life but being made to feel as if I’ve been a waste of 53 years to Mum on a daily basis is also incredibly difficult and soul-destoying. It’s not something I’d ever think I’d be writing about on a public forum.

Please can anyone suggest anything? Thank you.

Thanks for reading.

Hi.Sapphira. I’m so very sorry to hear how you feel. Your emotions are really upset and giving advice is very difficult. If you have been self harming you must see your GP if you have not already done so. The reasons for self harming are very complex and I would not want to comment on here. It’s not uncommon for a parent to favour one of their children more than another. It often happens with older siblings that they resent younger ones. If your mum’s mental state is deteriorating then that could be why she is behaving as she does. You will have memories of happier days while she may be living from moment to moment. I’m so glad you spoke to the Samaritans. They are always there and I hope if you feel bad at any time you will ring them again. But if you haven’t been the first call should be to your GP. Have you a sympathetic doctor?
You have not been a waste for 53 years to your mum. It’s not your mum talking now, but an emotional lady who may be feeling a bit angry with herself and the world. Take care, and above all, get some professional advice. Don’t ‘go it alone’. We all need help at some stage of our lives and it’s no disgrace to want it. You have reached out here and good for you. The people on this site know only too well about pain, So you are in good company. Blessings.

Hello Jonathan. Thanks so much for responding. I appreciate your words and I send condolences on your loss, which I believe was 6/7 months ago. It’s tough isn’t it. It’s 34 months since I lost my Husband but “time” to us bears no resemblance to time in the real world. I think my loss features heavily within the breakdown of my relationship with my Mum to be honest. There’s a lot of widsom in your words, all we can do is keep going isn’t. Thank you again Jonathan for spending some time to send me your kind reply.

I’m out of my depth. Mum still shouting at me, saying such hurtful things. I can’t even say I’m her carer as she won’t allow herself to be cared for. She has had debilitating OCD for years and has terrible “control” problems. Not a clue what to do. Can’t come to terms with loss of my Husband even though I lost him in October 2016 and I can’t cope with anything. Mum won’t see professionals and I’m battered to bits emotionally as my hands are seemingly tied. I’m beginning to resent that all this seems to be resting on my shoulders as I’m one of 3 siblings. The other two think I surely just be making things sound worse than they are but I’m not. I feel bad for talking about this on an open forum and I realise I must sound utterly selfish as well. Still self-harming due to the pressure.

Sapphira you really do need some backup you really shouldn’t be left on your own to cope. Take your siblings to one side and tell them quietly but firmly that you can’t cope and if you are ill then who would help to look after your mum then. You need to see your GP and get some help for your own problems.
Your mum is not herself so please don’t take what she says personally. My lovely, gentle, kind husband became rude and demanding over the last weeks of his life and it hurt me so much the way he spoke to me but I began to realise that it wasn’t really him. His illness, frustration, pain and medication was speaking.
Don’t feel bad talking this through. I doubt non us thought we would be talking about our feelings on a forum but it really does help when there is no one else and we all understand, and your not selfish, don’t ever think that. After losing your husband then having to cope with your mum, I can’t imagine what pressure your going through and wonder why your siblings can’t see this for themselves.
Take care Pat xxx

Thankyou so much for replying Pattidot. I really appreciate your comments and kindness. Sometimes it helps to get the thoughts out of your head doesn’t it. Sending you thanks and kindness.

Tina 19,

I am so sorry for what you are going through. I understand that seeing your mum in this way, not acting herself is distressing you deeply.

My dearest Mum passed on the 25th May. Mum had Dementia and she suffered for many years. The past 2 years were the most difficult as I would visit and help with caring for my Mum when my sister was away. It was heartbreaking because there were moments Mum would recognise me, then out of the blue… I was like an imposter. She would be scared of me and tell me to go!. It broke my heart but I knew it was her illness.

Now she has passed I am filled with so much guilt . Feeling I could have done more, helped more, been at her side more.

The truth is… I did what I could. I know your doing your best. Please please seek advice and support. Self harming isn’t going to make things easier. You need to be easier on yourself no matter how difficult things get. Im so sorry for your loss. The grief and stress you are going through is too much for you to deal with on your own. Please talk to your GP. Tell him what you are going through and how you are feeling. Everything is confidential. He/she can offer you the support you so need.

Please take care Tina xx

Hello Sasha
Thanks so much for writing. I’m so sorry to read about what happened to you and your Mum. It’s hardly anytime at all for you is it so it’s very kind of you to reply.
In my case it’s the fear of losing my Mum as I’m experiencing “anticipatory” grief and the fact that we once, did everything together and now it’s as if all emotional bonds have been severed. I became changed and difficult to bear though since I lost my Husband so I blame myself for the situation.
I know when the worst happens, there’ll be a lot of inner conflict as much as sadness to deal with. I suppose many people have difficult aspects to try and come to terms with.
Mum has the results of a head scan next week. I imagine it’s then when we will get to know if she has dementia.
Im grateful for your comments and send you kind and warm regards.
Tina 19 ( previously posting as Sapphira).

Tina 19,

I totally understand how you feel as exactly the same. For years my Mum was ill and bed ridden and we tried to prepare ourselves years ago. The truth is… when it happens… the feelings, thoughts, hurt is completely different. Nothing can prepare you.

Dont blame yourself. Your grieving. Im struggling with all the foreign feelings right now too. Its so difficult. Theres no shame in asking for help.

I sympathise with your situation. You need to find a good support network to help you through this. There are alot of organisations out there that will be willing to work with you and support you through this difficult time.

Your in my thoughts. Let me know how you get on with your Mums scan results.

Please take care xxx

Hello Sasha
Thanks very much for your reply, I really appreciate your words.
It’s been a terrible few days. Mum is getting much weaker but her attitude towards me is becoming so hurtful that I just want to run away and disappear. Mum won’t let us get Social Services or the Memory Assessment Team to help us and I don’t think I’m strong enough to shoulder this on my own. I’m with my Mum all the time and I’ve heard Mum say things at me that my siblings will never experience. But we were the closest of us all and I don’t understand it. Mum says I make everything about “me”, I have to accept that as losing my Husband changed me, and not for the better.
How have you been coping? Its very kind of you to reply to me considering what you are going through yourself. I hope you’ve had some gentle days and a bit of serenity. Sending warmest wishes. Take care yourself as well. x

I lost my mom three years ago. 93. she had dementia. there were times as her carer that I tore my hair out, and took things out on her. I deeply regret those times. so please, as you go along, remind yourself the less you allow it to get to you, the fewer regrets you will have, when one day she is not there.

Thanks Berit, I understand completely what you say, I appreciate your reply. I hope life treats you kindly today.

Hi Tina,

Im so sorry that your going through so much hurt.
Honestly Tina, this was the worst part for me to deal with. My sister that visited my mum and helped with mums care was absolutely heartbroken as my Mum did the same to her. Even though she was close to my Mum. Its the illness. I have come to realise that this behaviour is common towards the closest loved ones. Mum would do the same to me but I wasn’t around as much as my younger sisters. My sisters and I now believe its because Mum was pushing her away as she knew she would deal with her loss badly. The only advice I can give you is please just be patient, dont take to heart the hurtful words. They are just words. Speak to your siblings. Get them to share the care of your Mum more. Tell them how this is affecting you. Your already grieving.

You can do this Tina. You are stronger than you think. Running away would only shoulder more guilt for you. You say you have changed and not for the better? You need to get rid of any guilt. Tell yourself you did everything you possibly could. You need to take care of yourself and feel positive about being able to move on. None of this is your fault. I can’t imagine how you are feeling after your husband and now having to care for your Mum in these circumstances but you have to have faith in yourself. Just do your best… dont take anything to heart… and know you are a strong person and can get through this.

Sasha x

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Hello again Sasha
I truly hope you are holding up and coping as well as you can. I’ve just been reading your profile and my heart goes out to you with much compassion. You speak of how your loss has affected you and the difficult emotions you’ve been battling with and know how wretched these emotions feel. I’m in awe of you being able to offer words of comfort and guidance to others grieving whilst suffering yourself.
Mum goes to see the Dr tomorrow (Tuesday) for the results of the brain scan so I suppose we will know then. She can hardly remember getting the appointment or what it’s for, so it’s likely that it’s Dementia. It’s upsetting isn’t it Sasha to witness the change in personality. I try not to get affected too badly but have to admit it’s hard and it’s been another bad day today.
I hope you are being looked after well, you sound a very caring person. I imagine the world seems a very strange place at the moment for you.
Sending thanks and warm regards to you x

Dementia is just not an illness, it’s nightmare for both carer and the person you care for. I had the same experience because my wife had dementia at the end. I did get upset and angry too. She forgot appointments and lost things. It was not until a kind neighbour told me about how one of her parents had suffered like that I began to realise it’s not them but the illness. The last thing my wife would have wanted was to cause problems. Yes, I do feel guilt. Looking back, which may be a big mistake, I realise that there was more in the way of understanding I could have done. But hindsight is all very well, but does nothing to help the guilt. I know she has forgiven me, she would have at once.
This is all so difficult and it seems part of the pain we have to bear in this process of grief. When I read posts on here about people in similar situations I realise I’m not alone in my mistakes, if that’s what they were. So many regrets. But none solve the problem of this pain. It does improve. Little chinks of light appear then are gone, but they are there and I’m sure some light will eventually stay with me. I hope so.
Blessings to all.

Thank you Jonathan for those words.

We got the diagnosis yesterday of Alzheimer’s Disease.
Mum went to the consultants office knowing she didn’t feel right and from then on in came away with the knowledge that nothing will ever be right again. She said she wished she’d never known. I so wish I hadn’t coerced her into having the scan when she didn’t really want it. I didn’t handle a similar situation that well with my Husband either where the opposite course of action was taken. It seems there is NO correct course of action. I don’t think Mum will accept the medication, does it even help? Maybe I caused this Alzheimer’s because I put her under strain by not being able to cope with my grief after losing my Husband. I suspect so.

It’s too late to show repentance now, or make up for the harsh words we exchanged.

Thanks again for making your post.

Keep going.

Hi. Tina. Thanks for your reply. Being diagnosed with Alzheimer’s does not mean it will all go wrong at once. It is a progressive problem, but so many live with it and are often happy in their own world. I found after a time, and a lot of help, that to agree with whatever your loved one says is OK.
The Altimeters Society is a very useful place to go. They are so experienced in all the facets of this complaint.
Every individual will react differently. Memory loss is common, as is disorientation. No, it’s extremely unlikely you were in any way the cause of the problem It’s age. I think you were right to get an opinion. At least you now know what the problem is and can get help. Without knowing and ‘going it alone’ you would have been left wondering. In the end I found love and kindness can help a lot, and being patient too. Very difficult!
Just take it a day at a time with your mum. Good days bad days. It’s bound to happen. Be grateful for the good days, and try and accept the not so good ones. Take care of yourself because you are the one she relies on. Blessings.

Hi Tina,

And Thank you for your kind words of support.
I feel your pain as being there with my Mum… at her worst… witnessing the changes… the deterioration. The lost vacant eyes and emotions… its been soul destroying. I wish I had done more… visited more but I cant change that now. Im trying to cope but it really is difficult.

I really feel for you and what you are going through. Its alot to deal with.

How did it go at the doctors?

Your in my thoughts and please stay strong

Sasha xx

Hi Sasha

Mum got an Alzheimer’s diagnosis. The brain scan was confirmation. I didn’t really expect it to be so. I expected the symptoms to have been caused by an unknown money stroke.

What you have written is so sad, I’m so sorry. I can’t imagine how distraught you feel and had felt during her illnesses but I understand I will find out as time goes on.

It’s proving difficult as I’m the only one to shoulder the effects of her behaviour. I catch Mum on the phone to relative’s and she’s talking nice and fine. She speaks to my siblings nice and fine and at the doctor’s appointments she’s the typical nice elderly pleasant lady. But she is cruel beyond beyond belief with the things she says to me. I can try to deal with tempers and moods and aggression but the hurtful comments are on a completely different level. I have read in your posts similar instances with your dear mum and your siblings as well so maybe it’s not unheard of.

Sorry to ramble on for so long.

Are the feelings you describe getting worse or do you get get times when you feel less in despair. You talk about feeling regret etc. Guilt and/or regret can at times be worse than grief. I know this because I still feel this following the loss of my Husband.

Do you like reading Sasha? I ask because there is an excellent website called “What’s Your Grief” where you’ll find some incredibly good little articles. I was always reading their posts at one stage.

I hope today is kind to you.
Thanks again for replying, it’s appreciated.

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Hello Jonathan
Thanks for your helpful reply, I nearly missed seeing it. Thanks, it’s appreciated.
I will have a look at the website in more detail that you mention, I have briefly seen it previously.
I always read your posts in other threads when I see them, they are always so supportive and understanding. You sound a very empathetic person, I’m sorry to have read what’s happened to you as well.
One minute life is either going so well or we are just plodding along nicely and then things happen and everything changes doesn’t it and sometimes we feel we never really appreciated our good fortune as well as we could have done whilst we were living it. Maybe that’s just me.
Sending you kindness Jonathan, and thanks again for replying.