This absolutely makes sense and the guilt trips other people project on to you really don’t help. For the sake of your mental well being and family life you have to do what’s best for you. Dementia can continue for a long time and family members are often completely held hostage by this awful disease to the extent their own lives and ambitions are sacrificed.Apologies if this thread is no longer active. I found your message after a desperate attempt at finding others who may feel the same as me.
My Mum, 69 was has early on set dementia nearing on 10yrs since her diagnosis. I'm 36 with two small children (3 and 6). My father, also 69 was my mum's main carer for the majority of her illness. It wasn't until almost 2 yrs ago she was placed into a care home full time.
At first, I would happily visit Mum every week. Taking all the required COVID tests etc. But now I am struggling, I'm exhausted with all of this now. I have no more I can give. I fall into a bout of depression after seeing her, I struggle to get myself out of it. But after a month or two I feel stronger, then see her again and go back to square 1. I can't keep this vicious cycle up. It effects my own family life, my children notice the change in me each time.
The guilt I feel is overwhelming, my father and brother make more effort and visits often. When I speak to them, always ask if I've seen her and make comment like "well, she hasn't got long you should try". Boom. Pour more guilt on top of massive amount I have already. They don't seem to understand how different I feel.
I need to say goodbye.
Apologies if this doesn't make sense. Thank you. X
As a mum myself with MS which *could* render me fairly disabled later in life, I know that if my kids had families of their own, I would want them to prioritise that over me - especially if I were unable to actively engage in visits. Please try not to feel such guilt - your own little ones are of an age where they naturally need a lot from you and it is the natural order of things to invest your time in these little people who are the future!Apologies if this thread is no longer active. I found your message after a desperate attempt at finding others who may feel the same as me.
My Mum, 69 was has early on set dementia nearing on 10yrs since her diagnosis. I'm 36 with two small children (3 and 6). My father, also 69 was my mum's main carer for the majority of her illness. It wasn't until almost 2 yrs ago she was placed into a care home full time.
At first, I would happily visit Mum every week. Taking all the required COVID tests etc. But now I am struggling, I'm exhausted with all of this now. I have no more I can give. I fall into a bout of depression after seeing her, I struggle to get myself out of it. But after a month or two I feel stronger, then see her again and go back to square 1. I can't keep this vicious cycle up. It effects my own family life, my children notice the change in me each time.
The guilt I feel is overwhelming, my father and brother make more effort and visits often. When I speak to them, always ask if I've seen her and make comment like "well, she hasn't got long you should try". Boom. Pour more guilt on top of massive amount I have already. They don't seem to understand how different I feel.
I need to say goodbye.
Apologies if this doesn't make sense. Thank you. X
This makes perfect sense and I feel exactly the same. In the end I did go to my GP as I knew this was taking a huge toll on my mental health and I’m glad I did as I’m getting some support now that has been much needed for a while. I make no plans to see mum, I just sometimes say to my self that today is the day and off I go and once it is done, I need a couple of days to re calibrate. Being a carer is exhausting, coping with all Covid threw at is was and still is exhausting and two small children and definitely exhausting! Please offer yourself some kindness, you deserve it. 💕Apologies if this thread is no longer active. I found your message after a desperate attempt at finding others who may feel the same as me.
My Mum, 69 was has early on set dementia nearing on 10yrs since her diagnosis. I'm 36 with two small children (3 and 6). My father, also 69 was my mum's main carer for the majority of her illness. It wasn't until almost 2 yrs ago she was placed into a care home full time.
At first, I would happily visit Mum every week. Taking all the required COVID tests etc. But now I am struggling, I'm exhausted with all of this now. I have no more I can give. I fall into a bout of depression after seeing her, I struggle to get myself out of it. But after a month or two I feel stronger, then see her again and go back to square 1. I can't keep this vicious cycle up. It effects my own family life, my children notice the change in me each time.
The guilt I feel is overwhelming, my father and brother make more effort and visits often. When I speak to them, always ask if I've seen her and make comment like "well, she hasn't got long you should try". Boom. Pour more guilt on top of massive amount I have already. They don't seem to understand how different I feel.
I need to say goodbye.
Apologies if this doesn't make sense. Thank you. X
I had both Mum and Dad in hospital at the same time. Dad didn't have dementia but copd and was admitted with pneumonia. He caught covid in the hospital and as a result both Mum and I became infected.When my mother died I did shed a tear but what I felt mostly was relief that the indignities of her life with dementia had ended. I felt that she - and, yes, her family - had endured enough. She would have been horrified at what had become of her, a shell of the woman she once was.
I got a visual tribute made for her funeral. I chose the photographs and the music (John Rutter’s setting of ‘For the Beauty of the Earth’). When it came back for my approval and I played it I burst into tears (I’m welling up now just thinking about it) seeing my mother so vibrant and happy. She had had dementia for so long that I had almost forgotten how she used to be.
There’s no shame in wanting it all to be over when the dementia is very advanced. Dementia destroys lives and relationships in a very particular way unlike most other illnesses. Bit by bit the person is taken away from you. By the time of the actual death most of the person has gone.
I sympathise and agreeIt’s taken me a while to build up the courage to post this and I apologise in advance if anyone takes offence. I have just watched my poor mum die very slowly over two weeks in her care home. The staff were amazing, did everything they could to make her comfortable, and nurses came out to administer extra medication when needed but I wish to god, if there is one, that I had been able to slip something into her mouth to speed her on her way.
You are not coldhearted but exhausted with the progress of this cruel, cruel disease. Take a break - do something for yourself instead - even a simple thing like having morning tea with a friend, going for a walk & remembering the good times. Talk to the care home nurses and get their support too. You are not alone KathMy mother is in her mid nineties and in the very late stages of alzheimers. She has been in a care home for almost 6 years. Her worst fear was to end up with dementia. In the earlier stages she would ask us to give her something to kill her and we would try and reassure her that things would get better and she would not always feel so down, despite not really being convinced of this ourselves. She enjoyed having visitors but then Covid arrived and she did go downhill. She is now bedbound, skin and bone and sleeps most of the time. Her speech is very limited and mostly unintelligible. During the one hour visits she barely stirs, her eyes never open more than a slit, she does not know who anyone is. She is well cared for but her quality of life is non existent. It is a living death. I know that she would want to just pass away in her sleep but despite her frailty her heart carries on beating and she has to endure this existence. The staff say that she is happy! Sometimes she cries out. She is bewildered and who knows what is happening in her mind. I wish that this would all end but I feel guilty for thinking like that, but I know that she would want the same. I don't know what keeps some elderly people going when they have reached the end of their life and all that is left is to lie in a bed day in day out with no purpose other than waiting for your heart to stop and give you peace. When I visit I come away thinking that I do not want to go again which causes more guilt. I don't thing she even knows that I am there. Is there really any point anymore. It is like having a final viewing over and over again. I just can't face visiting anymore. Reading this back somehow sounds cold hearted, but it is reality and honest.
People with dementia will never meet the criteria for this as they can live for years after being deemed no longer mentally competent. Even if you’ve made an advanced directive I doubt if it would hold any weight. My Mum has reached the latter stages of dementia in three years. Although she’s fully mobile she doesn’t recognise anyone, is distressed and doubly incontinent. She has no medical problems and I imagine this living death will continue for years. In the meantime it feels like my own life is on hold.Hi Everyone - I have just posted a thread on "after dementia", as my mum has just passed away, but I wish I'd posted here too, as you all say things that I said and felt myself, sharing and witnessing the horrible reality of slowly dying with dementia and how it looks.
Here in NZ, we now have a Death with Dignity provision available, but it only passed into law at our last general election and by then mum was not compos mentis enough to be able to put anything legally binding into place, and although she often talked about not wanting to lose mental clarity as she got older, she/we never actually thought of beginning the process earlier. She too, would have been devastated if she'd known what she was reduced to, and that we as her family, had to see it and try to deal with it.
I and my husband plan to do an advanced care plan for ourselves, as, like others here, I do NOT want my children to have to deal with something like this again.
My caring and heartfelt thoughts to all who have been, or still are on the same journey as me, and I can only wish your own loved ones a speedy and peaceful passing.