I don't think that I want to visit anymore
- Thread starter Dominique
- Start date
Hi @15moterbike
whisk there was something helpful to say .... sending a blanket of warm thoughts to wrap you both in
whisk there was something helpful to say .... sending a blanket of warm thoughts to wrap you both in
Apologies if this thread is no longer active.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
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 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.
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!
This makes perfect sense @strawbee and is exactly how I feel too. It is exhausting and can go on for such a very long time. I have now come to the point where I am prioritising my own wellbeing and trying to ensure that I am enjoying my own life as best I can. I visit when I feel strong enough, but it takes a huge effort and like you I am left upset and almost traumatised for some time afterwards. I know that my mum would understand, but that doesn't ease the guilt that is ever present. This really is an unending grieving process and I just long for the day when I can finally see some closure, not least for mum. Please know that you are not alone, you are doing your best and nobody can ask more of you.
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. 💕
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.
Mum had altzheimers and ended up in hospital.
Dad tested negative but died within a couple of weeks because he was so weak. The day before Dad died, I had to say goodbye to our beloved dog from cancer. I didn't tell either of them he had died but Dad deteriorated very quickly after that and if I could have done for him what I did for Shep. I was at the hospital twice a day every day but when I went back in the late evening with my sister, Dad was still on oxygen. I asked for him to be taken off it as I wanted it to over quicker. I imagined sitting for hours watching and listening to him struggling for every breath. We both talked to him even though he was unconscious. I told him Shep was waiting for him to play ball and he just went.
We didn't tell Mum until she came home 5 weeks later, a week after Dad's funeral.
Decisions are difficult but I have told her GP that Mum will not go into hospital again. I look after her at home with 4 care visits daily. It is not easy, in fact it is downright difficult but I don't have other commitments so can do this, for now.
I too, used to dread visiting mum in her CH. She completely shut us out before she was admitted to hospital with that final seizure/ stroke. I'd dread the day before, feel rubbish waking, and it was pure misery whilst we were there. I totally understand xx
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 Kath
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.
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.
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.
An Advance Directive is a legal document expressing the wishes of the person and cannot be ignored. So if you write one saying you wish to receive no further treatment should you lose mental capacity, that's what will happen. Maybe.
My mum's Living Will stated that though she was treated for a broken hip, which I agreed with. However, as I found, each time something happened (UTI, etc.) I had to decide what to do about it, which is hard. I did get a 'no more hospital' plan put in place but wonder what I would have said and done if she got pneumonia or similar. I'd like to say I would have insisted that she remained in the care home and let nature decide but don't know if I'd have had the strength to do that. (Not to mention the horrible looks and muttering from care staff. When I told one about the plan not to take her to hospital if she had another fall, she said to me in disgust: 'Don't you love your mother?')
My mum's Living Will stated that though she was treated for a broken hip, which I agreed with. However, as I found, each time something happened (UTI, etc.) I had to decide what to do about it, which is hard. I did get a 'no more hospital' plan put in place but wonder what I would have said and done if she got pneumonia or similar. I'd like to say I would have insisted that she remained in the care home and let nature decide but don't know if I'd have had the strength to do that. (Not to mention the horrible looks and muttering from care staff. When I told one about the plan not to take her to hospital if she had another fall, she said to me in disgust: 'Don't you love your mother?')
All so excruciatingly heartbreaking and I have it all ahead of me. I agree with the idea of your taking a break for a couple of weeks. But when you return to your Mum, read to her, poems, stories, letters, anything you think she may/might have enjoyed previously. Play music to her. She might be lying there seemingly absent, but she is still there somewhere and should be treated so until the very end. She will hear you and you might just gain some small comfort in the process. Take good care of yourself.
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