Even after a few years after my mum's death, I still feel my mind ruminating and feel so sad. She became so rigid and unresponsive and feel lack of stimulation with only having me to visit may have contributed to her decline. I just didn't really think I could change anything. We had a great relationship always and when she went into a nursing home for her dementia I visited everyday but more often it was only a short visit never more than an hour towards the end. I have a young family so did feel stressed trying to manage time generally. For some reason a memory of a social worker visiting and mum being more responsive in the increased interaction keeps coming into my mind and I feel guilty that I didn't maybe take that as a sign she needed more company. I was always running around trying to manage my life that I never really stopped to plan more with her and I feel guilty. I do have siblings but they did not visit not because of bad relations just lack of sensitivity not the type to ever really ask after their mum. I just feel this feeling has grown like a snowball and my feeling of sadness for her isolation and my guilt for not maybe seeing the bigger picture is affecting me everyday. Thanks for the ramble it is hard to explain all but I can't seem to put this out of mind. She was the kindest and truest lady and feel sad she didn't get the attention from others she deserved as in her life she never was the type to expect from others. Maybe I am thinking she would suddenly have changed and deep down she would have been happier but it is the fact now it is too late. Any advice appreciated or similar experiences. Thanks.
Does it ever go away
- Thread starter Scarlett23
- Start date
Hello @Scarlett123
It's so easy to think of all the things you could have done once you are free from the responsibilities of caring, are rested and have had time to think.
My mother hadn't spoken for months but replied with her name when a social worker visited and asked.
It sounds to me as if you are missing your mum now you have realised her loss is permanent.
A friend visited me yesterday. She lost her husband a year ago and has been managing really well. She said the first anniversary of his death has made her feel worse than ever. We agreed the first year of grieving can be managed by trying to adapt to a new way of life but once the adjustments have been made the realisation that this is how it will always be can be quite upsetting.
It's so easy to think of all the things you could have done once you are free from the responsibilities of caring, are rested and have had time to think.
My mother hadn't spoken for months but replied with her name when a social worker visited and asked.
It sounds to me as if you are missing your mum now you have realised her loss is permanent.
A friend visited me yesterday. She lost her husband a year ago and has been managing really well. She said the first anniversary of his death has made her feel worse than ever. We agreed the first year of grieving can be managed by trying to adapt to a new way of life but once the adjustments have been made the realisation that this is how it will always be can be quite upsetting.
Im so sorry @Scarlett23
Please dont think you have failed in some way. Rigidity and unresponsiveness is part of the final stages of dementia and there is no way to prevent this.
Hostess mode seems to happen right up to the end. A few weeks before my MIL died from vascular dementia a physio got her standing unaided
and I honestly have no idea how. When my mum was on palliative care (just days before she died) a consultant came to see her and she answered his questions lucidly (though not accurately!) - you would hardly realise that she had dementia! I think the same thing happened when the SW visited your mum, but she felt she could just be herself with you.
xx
Please dont think you have failed in some way. Rigidity and unresponsiveness is part of the final stages of dementia and there is no way to prevent this.
Hostess mode seems to happen right up to the end. A few weeks before my MIL died from vascular dementia a physio got her standing unaided
and I honestly have no idea how. When my mum was on palliative care (just days before she died) a consultant came to see her and she answered his questions lucidly (though not accurately!) - you would hardly realise that she had dementia! I think the same thing happened when the SW visited your mum, but she felt she could just be herself with you.xx
Dementia is a progressive, terminal disease and nothing can hold back its ravages. As others have said, there are fleeting moments of greater responsiveness or lucidity but I wouldn't read anything into these; they are unpredictable and random. It sounds as if you did your absolute best, visiting so regularly when you had a young family. An hour is quite a long time for a visit if the person is unresponsive or sleeping. I never managed more than an hour once my mother couldn't really talk any more and showed no interest in anything - I used to watch the clock and leave dot on the hour.
It might be worth having some counselling if these feelings don't start to abate. Guilt and regret are very common but they don't mean that you didn't do your best in the circumstances.
It might be worth having some counselling if these feelings don't start to abate. Guilt and regret are very common but they don't mean that you didn't do your best in the circumstances.
Many thanks for your responses, I can't tell you how comforting it is to hear your feedback. I do want to move on with my life but I even dream about it all.. not sure how normal that is. Mum died 2. 5 years ago. I am not sure if this is common but since her diagnosis I feel her condition was relatively unobserved by the medics apart from annual reviews maybe this has added to the feeling of whether she could also have had more intervention if that makes sense. She had been on lots of medication for her heart and arthritis but for some reason these were stopped a few years before her death. I feel I should have challenged. Has anyone experienced this. Often thought about requesting her medical notes but not sure if anyone has done this after death and if there is any point. I would have thought being taken off tablets she had been on for 20 years is strange just wish I had challenged. Sorry I've just added this extra issue and maybe a different thread but do wonder if due to her condition she was not seen as priority - hindsight is a great thing I know lol. Thanks.
Hi @Scarlett23
I agree with the others, nothing you could have done would have changed your mum's condition. Dementia is horrible and it's difficult to accept, especially at the worst of times, that nothing can be done to make things better.
With regard to medication - my dad had some of his long standing medication stopped, although I had a discussion with his GP about it at the time.
In dad's case it was done partly because he was becoming resistant to taking his meds so priority was given to the most important. Also (the GP told me) some medications become less effective as a person ages and these should be spotted during a review.
I agree with the others, nothing you could have done would have changed your mum's condition. Dementia is horrible and it's difficult to accept, especially at the worst of times, that nothing can be done to make things better.
With regard to medication - my dad had some of his long standing medication stopped, although I had a discussion with his GP about it at the time.
In dad's case it was done partly because he was becoming resistant to taking his meds so priority was given to the most important. Also (the GP told me) some medications become less effective as a person ages and these should be spotted during a review.
I wouldn’t ask for your mother’s notes. Seeing them might well lead to more questions than answers. It’s normal to wonder whether you should or could have done more but, unlike for many other diseases, there is no cure for dementia and very little treatment to slow its progression. You will see from other threads that once a PWD has been diagnosed s/he and his/her family are pretty much left to get on with it. Most people seem to get one or two reviews at the Memory Clinic but that’s pretty much it unless the PWD’s behaviour becomes very extreme and s/he is admitted to a psychiatric unit for assessment and treatment.
I wonder whether you are turning your feelings of disappointment with your siblings and the medical profession onto yourself. Have confidence that you were a loving and dutiful daughter who did her best. You had a busy life with a young family and couldn’t devote hours of time to your mother as, say, a retired spouse can if s/he feels that s/he is up to it physically and emotionally.
I wonder whether you are turning your feelings of disappointment with your siblings and the medical profession onto yourself. Have confidence that you were a loving and dutiful daughter who did her best. You had a busy life with a young family and couldn’t devote hours of time to your mother as, say, a retired spouse can if s/he feels that s/he is up to it physically and emotionally.
