Hello there, I am new on here and thought this would be a good place to have some support and hopefully gain some online friends
I am struggling at the moment , My Mother who 90, is living with Parkinson’s , her dementia has worsened in the last few months , she is in the carehome where I work as I moved her as her physical and wellbeing was deteriorating during lockdown , she is better cared for and know she is safe now.
She has become increasingly aggressive and negative towards me, accusing me of stealing from her and blames me for most things ,she often tells me she hates me and although I know this is the progressing dementia it does affect me especially as I see her most days, she hears voices in her head and is often tearful as she believes what she hears and it’s always distressing her , when she does have clarity ,we have had a nice few chats. But these are few and far between , I miss my mum and love her dearly and we’ve always been close ,she is a much loved mum, and grandparent , I am considering changing my job now which I don’t really want to do and become a visitor with my brother , as I think for her and my wellbeing it is for the best , she is mostly fine with other people , so it is something triggering her when she sees or hears me , thank you for reading .
I’m so sorry for what you’re going through. I found it very hard to cope with my grandmother’s dementia. She didn’t know me…but was polite and friendly at first, but started to go off me. The last exchange we has was me saying i loved her and I’d visit again soon. Would she like that? No she said.
I have nothing useful to say except to keep doing what you are doing and remind yourself constantly that it’s the illness not your mum saying these things. By being around so much you don’t miss those moments of clarity which is important. As is standing by someone you love however objectionable their illness makes them. Have you ever wondered if she is meaner to you because she is more relaxed with you and feels safe to say whatever horrible thing the dementia tells her to? Best wishes and a virtual hug x
Thank you for your reply, I’m so sorry about your grandmothers dementia, like you said , I love being near her and making sure she is cared for, I do think she knows me well and feels like she can say how she feels easily , but it still hurts when it’s your mother , even when I know she cannot help at all, I always leave her room when she’s like this with ‘I love you Mum very much , no matter what you say , I also step back for a few days … big hugs to you too x
Hello Tjf63
Your anguish comes through very clearly in your post and I wish I had some answers for you. Dementia,whatever its cause, is an awful thing to watch someone you care for go through. It is often said and it makes sense to me, that you have two bereavements. One such as I think you are experiencing at the moment when your mother is presenting with behaviours that you simply don’t recognise as being your mum, and the second will be when she dies and is at peace. In between you have this period in no man’s land that plays havoc with your thoughts feelings and emotions and no doubt making you feel sad, angry, frustrated, tired etc at any given time overlaid with short happy times when the mum you know and love seems to return with the whole lot wrapped up in a guilt blanket with a voice that gives you little peace - maybe I shouldn’t have said or done this or that, maybe I should have…. It is exhausting and relentless.
Sourcherry made an excellent point by saying working in the same care home you may get to see her good times more than you would otherwise do.
There is a simple thing that you might like to try, it helps some. One of the hardest things about dementia is that the the worst bits of it - the aggression, verbal abuse, reduced communication, asking the same thing over and over again, when they don’t recognise you - whatever they are, can feel like that’s all there is. If you get a notebook and keep a record of the good bits - the smile, the recognition, normal conversation, joined in the singing - whatever you see as a positive it can help you get a bit of perspective that it’s not all bad. You may even find a pattern over time eg if the good bits occur more frequently in the morning use that time to your advantage. I should say its not an exact science! The record could be anything you want it to be, key words, paragraphs pictures whatever. Some find that after the person does die this little record is a source of comfort and your last memories aren’t all negative.
At the end of the day you are doing the best you can and that is all you can do. It may be fanciful but I also like to think that somewhere deep inside, your mother knows that.
Tot
Thank you so much for reply , I agree that I am very tired as it seems so relentless but I know also what my mother is going through is nothing compared to my own battles , when she shouts and swears at me to get out of her room … that’s the hardest thing when all I want to do is hug her
The notebook is a brilliant idea , I am in work today and have packed one in my bag and will see today if she is having a good moment
My husband is very supportive as he works in a care home too, when my sister or brother visit , she is fine with them
I can’t imagine what it is like for my mum to be so troubled sometimes hearing voices in her head making everything logical so warped
I cherish the happy conversations x
When you’ve had a chance to give it a go let me know how you’re getting on with the notebook. As a by the by, I know of one man who did this and after his mother died used these good bits to embellish a memory album of photos - he printed them out using different fonts and colours also added in some clip art. It was a beautiful album and he said it helped him remember his mum how she really was.