Full disclosure, I am not a full time carer so apologies if any of this makes people want to hand me a tiny violin... This is my first post because I've only just discovered the forum but really need some advice but may get quite long due to background. My 90 Yr old grandmother was diagnosed this year with Alzheimers and vascular dementia after at least 7 years of there clearly being something Wrong and doctors dismissing it as usual effects of getting older - even when she almost entirely had lost the power of speech. She has none of the 'usual' symptoms confusion, forgetfulness, personality changes etc which I think in a way is worse because it does mean she is 100% aware of what is happening and also made every GP and dementia specialist we've seen until this year claim there is nothing wrong that would suggest dementia. This is all by the by as she has now been diagnosed and has had visits from the world and his wife to see what they can help with (occupational therapist, GP, memory clinic, mental health clinic, social workers x 3). All of which has amounted to a big fat nothing except advice we can't use (e.g. show her photos of her glory days - she's totally blind / Let her tell you stories about them - she can barely speak and it upsets her to try so we end up with howling as we try to comfort her). They all agree she needs more help but also all agree she would not be benefitted by being in a care home setting (she's extremely anti social and always has been, likes everything done her way, very fixed schedules, extremely judgemental of 'all those old people', and has said if in a home she would refuse to leave her own room - which I believe 100% and in which case her paying £1000+pw hardly seems the right choice as she can manage herself and her needs absolutely fine during the day and only needs help first thing in the morning and then at dinner time).
She has never been an easy personality. As the youngest grandchild I think maybe I didn't realise this until fairly recently. She's very changeable, judgemental, bitter and resentful of anyone with anything good going on, and does feel that we as her family should be basing our lives around her as the matriarch. All of this I am told has always been the case but got a lot worse when my grandfather passed away, and amplified since her dementia had got worse. She's also still my Granny who used to peel apples before she would give them to me right up until I was about 20....
Anyway (apologies- it has been a very long road and it's nice to talk!). My father (65) and I now go in to her house twice a day to sort out her tablets, microwave her meals on wheels, help her shower on days she feels she can't manage (which is only about 1 in 4 showers). It's not practical or possible for her to live with either of us or vice versa and dad is an only child. We're lucky she's not far away from us. But dad has his own health issues (nothing major YET but he is getting on and the whole family is very worried about the stress this is all putting on him) and we both work full time. No other members of the family have offered to help (I am the youngest of 4 kids, all local) and, even though I know it is selfish, I am starting to resent that my twenties have been characterised first by worrying about Granny and now worrying about both of them - I am stressed all the time! I lie awake for hours worrying about it, and Dad does the same and when Dad is going through a rough day with Granny, I then go through a rough day with both of them.
He and I have realised this isn't sustainable, not least because it's making both of us ill. He has finally accepted asking carers to step in so that we can actually visit Granny rather than be her carers every time. We'll still be her carers some of the time but this will now be split so that days when we're both working, she will have carers instead. Granny has been alternating between crying she wants to go into a home, that she wants carers because we don't do anything right, and that she wants none of these things because she's not as bad as we seem to think. All of this again is very distressing for Dad because he has POAs but obviously doesn't want to do anything against Gran's wishes. We've had lots of false starts both with carers and with looking into care homes over the last year or so (e.g. weeks of planning and Granny being in agreement and even relieved only to change her mind the day before and demand it all be cancelled again this is accompanied by her howling in misery so she obviously surely does mean it?)
Carers are now finally arranged. Twice a day on days we're both working. Other days we will still step in. (I say we, but mostly it will be Dad and I will go maybe a third of the time to give him a break but so that she still has family going). Dad is devastated by this decision and feels he has failed as a son, she doesn't want this, every other person caring for their LO just pulls up their socks and gets on etc etc. Personally, I feel we should ask the carer to assist occasionally so that when Dad has a day off work he has a day off caring for his mom as well...
All this to say, are we doing the right thing? And how on earth can I help Dad realise that and move on from how guilty he feels? I'm worried the benefits of him not being the one doing it all are going to be outweighed or offset by the negative feelings of guilt etc.
Thanks for any advice. Again I wonder if maybe as awful as it feels for us, it's really not that bad and we need to just Get Better At This.
She has never been an easy personality. As the youngest grandchild I think maybe I didn't realise this until fairly recently. She's very changeable, judgemental, bitter and resentful of anyone with anything good going on, and does feel that we as her family should be basing our lives around her as the matriarch. All of this I am told has always been the case but got a lot worse when my grandfather passed away, and amplified since her dementia had got worse. She's also still my Granny who used to peel apples before she would give them to me right up until I was about 20....
Anyway (apologies- it has been a very long road and it's nice to talk!). My father (65) and I now go in to her house twice a day to sort out her tablets, microwave her meals on wheels, help her shower on days she feels she can't manage (which is only about 1 in 4 showers). It's not practical or possible for her to live with either of us or vice versa and dad is an only child. We're lucky she's not far away from us. But dad has his own health issues (nothing major YET but he is getting on and the whole family is very worried about the stress this is all putting on him) and we both work full time. No other members of the family have offered to help (I am the youngest of 4 kids, all local) and, even though I know it is selfish, I am starting to resent that my twenties have been characterised first by worrying about Granny and now worrying about both of them - I am stressed all the time! I lie awake for hours worrying about it, and Dad does the same and when Dad is going through a rough day with Granny, I then go through a rough day with both of them.
He and I have realised this isn't sustainable, not least because it's making both of us ill. He has finally accepted asking carers to step in so that we can actually visit Granny rather than be her carers every time. We'll still be her carers some of the time but this will now be split so that days when we're both working, she will have carers instead. Granny has been alternating between crying she wants to go into a home, that she wants carers because we don't do anything right, and that she wants none of these things because she's not as bad as we seem to think. All of this again is very distressing for Dad because he has POAs but obviously doesn't want to do anything against Gran's wishes. We've had lots of false starts both with carers and with looking into care homes over the last year or so (e.g. weeks of planning and Granny being in agreement and even relieved only to change her mind the day before and demand it all be cancelled again this is accompanied by her howling in misery so she obviously surely does mean it?)
Carers are now finally arranged. Twice a day on days we're both working. Other days we will still step in. (I say we, but mostly it will be Dad and I will go maybe a third of the time to give him a break but so that she still has family going). Dad is devastated by this decision and feels he has failed as a son, she doesn't want this, every other person caring for their LO just pulls up their socks and gets on etc etc. Personally, I feel we should ask the carer to assist occasionally so that when Dad has a day off work he has a day off caring for his mom as well...
All this to say, are we doing the right thing? And how on earth can I help Dad realise that and move on from how guilty he feels? I'm worried the benefits of him not being the one doing it all are going to be outweighed or offset by the negative feelings of guilt etc.
Thanks for any advice. Again I wonder if maybe as awful as it feels for us, it's really not that bad and we need to just Get Better At This.
