My Mum is 71yrs old and my Dad 74, in the last 18months my Mum and Dad have gone to hell and back and even now things just don't get any better. The hell all started when my Mum was diagnosed with breast cancer 18months back, thankfully the NHS were brilliant and got her in quickly to remove the tumour and all went well with the op, she would now face 6wks of radiotherapy as an outpatient, during the few days she was in hospital post surgery, there was one day in particular that we as a family remember vividly, on this day my Mother had what can only be described as a totally out of character experience, where she become totally hyper and was so vocal to everyone who she seen including total strangers, it was slightly embarrassing, to the family she seemed totally off the wall.
Less than a week after being discharged from the hospital my Mum was rushed by ambulance to another hospital with intense stomach pain, where she was misdiagnosed with an infection and where a junior surgeon wanted to get her CAT scanned that day, he was overruled by a Consultant that this was not necessary. The following day my Mum was still in terrific pain, at 5pm that day the consultant decided a CAT scan was required, the result of this was that her bowel was perforated and Mum required urgent surgery as her life was now in danger. Mum was prepped and rushed into theatre for emergency surgery, the surgery took approximately 5-6hrs and whilst my Mum was in recovery we were told that if the perforation had not been diagnosed when it was she would have died. My Mum had part of her bowel removed and had to have colostomy bag to help with her recovery. During the three weeks she was in hospital recovering she was very unwell and there were times we thought she wouldn't make it. We all spent hours at the hospital but my Fathet spent every hour possible at my Mothers side, from 9am until at least 10pm every day she was in hospital, no matter how hard the family tried to get him to go home for rest there was no chance after all they had been married 54yrs and my Dad feared that if he went home something bad may happen to her, as there had already been some failings with her treatment and care. The 3wks absolutely brought both my Mam and My Dad to their knees.
Once home it took a little time to recuperate and get used to the stoma and fitting of the bag, but with the help of the stoma nurse they got into a routine. Six weeks after being discharged from hospital the radiotherapy could finally begin, to be honest neither of them had fully recovered but the radiotherapy began, if my memory serves me right it was during this period that my Mum developed a hernia at the same site as the stoma, this brought along pain and discomfort as well as a few complications with the fitting of the colostomy bag but they both got through the radiotherapy and learnt to deal with the complications bright on by the hernia but needless to say events had took their toll on them both.
Roughly 6-8months after the breast cancer operation we began to notice Mum was becoming forgetful, little things like couldn't get the right word or remember an event or a photo of her grandchild. On speaking to the GP and Consultants at different hospitals this was put down to post traumatic stress disorder and things would be better in 6monthd or so but they didn't and forgetfulness and remembering of events that happened only a few hours ago was becoming more and more obvious. My Mam attended a memory clinic where they did certain memory tests and scored something like 97%, a brain scan was done and the consultant explained that although there were a few abnormalities there was nothing conclusive. So we all hoped that the diagnosis of it being PTSD was correct and she would recover back to normal, although I think close family members including my Father had reservations.
This behaviour continues throughout most of 2015 and was slowly getting worse, towards the end of 2015 events that happened a hour or so back weren't being remembered, we were having to remind Mam who certain people or places were who we were speaking about during conversations, this was mainly non family members, or we had to tell here where we lived, her son, daughter and grandchildren who she previously would know exactly where we lived. It was now starting to take a toll on my Dad, it was hurting him to see his childhood sweethearts memory disappearing in front of him, he wasn't sleeping, he had done everything for sometime now, so he had in effect become a full time carer, he'd stopped playing golf twice a week as he felt he couldn't leave her.
In January of this year my mother seen the consultants regarding her memory again, on this occasion he diagnosed what we already knew but hoped otherwise, that my Mum had early onset Alzheimer's disease. It was heartbreaking for us all, we were frustrated, angry and afraid, as far as we were concerned she had gone through enough, in the last 18months and this was so cruel and to a nicer person you'd ever wished to meet, yes I am biased but it's true, my Mam wouldn't hurt a fly, she was always there for everyone, she'd give her last and she is the gentlest, nicest, loving, caring and compassionate, Mother, Wife, Nana, Great Grandmother, friend and person that you ever could meet, she doesn't deserve all of what's been thrown at her in the last 18months and neither does my Dad, who is the same in all ways as my Mum.
What I haven't mentioned is that the stoma would have been reversed by now but the hernia is so big now that an operation now would not be a wise move, not now not ever.
Over the last couple of weeks in February, she has got more forgetful and confused. Here is the really sad part and had brought my Father to his knees emotionally and physically, despite recognising all the family when we phone or call to see her, she is convinced my Father is another person who shouldn't be in the house, he's not her husband, he shouldn't sleep with her, she tells him not to tell anybody especially the kids he's in bed with her, once reminded and it really takes some effort on my fathers part and on our part she will accept that he's her husband but not long after she will forget again, it seems to be worse in the evening and in bed she keeps waking and asking who he is and he shouldn't be in her bed and to get out of the house. We seem to think she remembers the image of him when he was young but not now, so effectively there's two of him but the older one is forgotten very often on a daily basis. We are going to make sure my Dad gets back to his golf twice a week from this Monday, one of us will go sit with my mother for a few hours or maybe take her out for a run in the car. So that's good he will be able to see and talk with his mates it will give him a break but as for him not being able to sleep very well and being absolutely shattered and worn out, it is hard to know what to do so he's able to get some sleep. This feeling of helplessness is awful, what compounds it is if you mention the word Alzheimer's to my Mother or tell her she has Alzheimer's or is on medication to treat it, she will not accept it and gets really annoyed, we get told my memory is fine and it's getting better, so what to we do, how do we broach the subject. We want to talk about Alzheimer's Cafe's and Drop ins etc but we are afraid to upset her or making her uptight. So please if anyone can advise us on any issues that I have talked about please please let me know because the one thing none of us understand is when any of us children, daughter in laws or grandchildren visit we are recognised immediately and not forgotten even if it's been a few weeks since we spoke or visited. Yet my Fathet who has lived with my Mother day in day out for 54years, my Mother is forgetting who he is on an hourly basis and getting quite upset and frustrated that he won't leave and is sleeping with her. None of us understand this and I would have been far happier if it had been me that Mam can't remember, it would hurt don't get me wrong, but it hurts more that it's my Dad going through it day in day out.
So that is my first post and the story of my Mam and Dad to this point. I apologise that it is such a long post and for any typing errors or poor grammar, it's hard when your doing this on an iPhone and to stubborn to put your glasses on. Any advice you can offer would be very welcome and any support you think I can get for them I would be most grateful.
Thanks
Richie
Less than a week after being discharged from the hospital my Mum was rushed by ambulance to another hospital with intense stomach pain, where she was misdiagnosed with an infection and where a junior surgeon wanted to get her CAT scanned that day, he was overruled by a Consultant that this was not necessary. The following day my Mum was still in terrific pain, at 5pm that day the consultant decided a CAT scan was required, the result of this was that her bowel was perforated and Mum required urgent surgery as her life was now in danger. Mum was prepped and rushed into theatre for emergency surgery, the surgery took approximately 5-6hrs and whilst my Mum was in recovery we were told that if the perforation had not been diagnosed when it was she would have died. My Mum had part of her bowel removed and had to have colostomy bag to help with her recovery. During the three weeks she was in hospital recovering she was very unwell and there were times we thought she wouldn't make it. We all spent hours at the hospital but my Fathet spent every hour possible at my Mothers side, from 9am until at least 10pm every day she was in hospital, no matter how hard the family tried to get him to go home for rest there was no chance after all they had been married 54yrs and my Dad feared that if he went home something bad may happen to her, as there had already been some failings with her treatment and care. The 3wks absolutely brought both my Mam and My Dad to their knees.
Once home it took a little time to recuperate and get used to the stoma and fitting of the bag, but with the help of the stoma nurse they got into a routine. Six weeks after being discharged from hospital the radiotherapy could finally begin, to be honest neither of them had fully recovered but the radiotherapy began, if my memory serves me right it was during this period that my Mum developed a hernia at the same site as the stoma, this brought along pain and discomfort as well as a few complications with the fitting of the colostomy bag but they both got through the radiotherapy and learnt to deal with the complications bright on by the hernia but needless to say events had took their toll on them both.
Roughly 6-8months after the breast cancer operation we began to notice Mum was becoming forgetful, little things like couldn't get the right word or remember an event or a photo of her grandchild. On speaking to the GP and Consultants at different hospitals this was put down to post traumatic stress disorder and things would be better in 6monthd or so but they didn't and forgetfulness and remembering of events that happened only a few hours ago was becoming more and more obvious. My Mam attended a memory clinic where they did certain memory tests and scored something like 97%, a brain scan was done and the consultant explained that although there were a few abnormalities there was nothing conclusive. So we all hoped that the diagnosis of it being PTSD was correct and she would recover back to normal, although I think close family members including my Father had reservations.
This behaviour continues throughout most of 2015 and was slowly getting worse, towards the end of 2015 events that happened a hour or so back weren't being remembered, we were having to remind Mam who certain people or places were who we were speaking about during conversations, this was mainly non family members, or we had to tell here where we lived, her son, daughter and grandchildren who she previously would know exactly where we lived. It was now starting to take a toll on my Dad, it was hurting him to see his childhood sweethearts memory disappearing in front of him, he wasn't sleeping, he had done everything for sometime now, so he had in effect become a full time carer, he'd stopped playing golf twice a week as he felt he couldn't leave her.
In January of this year my mother seen the consultants regarding her memory again, on this occasion he diagnosed what we already knew but hoped otherwise, that my Mum had early onset Alzheimer's disease. It was heartbreaking for us all, we were frustrated, angry and afraid, as far as we were concerned she had gone through enough, in the last 18months and this was so cruel and to a nicer person you'd ever wished to meet, yes I am biased but it's true, my Mam wouldn't hurt a fly, she was always there for everyone, she'd give her last and she is the gentlest, nicest, loving, caring and compassionate, Mother, Wife, Nana, Great Grandmother, friend and person that you ever could meet, she doesn't deserve all of what's been thrown at her in the last 18months and neither does my Dad, who is the same in all ways as my Mum.
What I haven't mentioned is that the stoma would have been reversed by now but the hernia is so big now that an operation now would not be a wise move, not now not ever.
Over the last couple of weeks in February, she has got more forgetful and confused. Here is the really sad part and had brought my Father to his knees emotionally and physically, despite recognising all the family when we phone or call to see her, she is convinced my Father is another person who shouldn't be in the house, he's not her husband, he shouldn't sleep with her, she tells him not to tell anybody especially the kids he's in bed with her, once reminded and it really takes some effort on my fathers part and on our part she will accept that he's her husband but not long after she will forget again, it seems to be worse in the evening and in bed she keeps waking and asking who he is and he shouldn't be in her bed and to get out of the house. We seem to think she remembers the image of him when he was young but not now, so effectively there's two of him but the older one is forgotten very often on a daily basis. We are going to make sure my Dad gets back to his golf twice a week from this Monday, one of us will go sit with my mother for a few hours or maybe take her out for a run in the car. So that's good he will be able to see and talk with his mates it will give him a break but as for him not being able to sleep very well and being absolutely shattered and worn out, it is hard to know what to do so he's able to get some sleep. This feeling of helplessness is awful, what compounds it is if you mention the word Alzheimer's to my Mother or tell her she has Alzheimer's or is on medication to treat it, she will not accept it and gets really annoyed, we get told my memory is fine and it's getting better, so what to we do, how do we broach the subject. We want to talk about Alzheimer's Cafe's and Drop ins etc but we are afraid to upset her or making her uptight. So please if anyone can advise us on any issues that I have talked about please please let me know because the one thing none of us understand is when any of us children, daughter in laws or grandchildren visit we are recognised immediately and not forgotten even if it's been a few weeks since we spoke or visited. Yet my Fathet who has lived with my Mother day in day out for 54years, my Mother is forgetting who he is on an hourly basis and getting quite upset and frustrated that he won't leave and is sleeping with her. None of us understand this and I would have been far happier if it had been me that Mam can't remember, it would hurt don't get me wrong, but it hurts more that it's my Dad going through it day in day out.
So that is my first post and the story of my Mam and Dad to this point. I apologise that it is such a long post and for any typing errors or poor grammar, it's hard when your doing this on an iPhone and to stubborn to put your glasses on. Any advice you can offer would be very welcome and any support you think I can get for them I would be most grateful.
Thanks
Richie
