I’ve been thinking about what to write in this message and I think it may turn out to be quite long so please bear with me!
My mum who is 77 has recently been diagnosed with the early stages of AD, but in some respects my sister and I aren’t entirely convinced by the diagnosis – denial?! I wonder if our experiences have been shared by anyone else.
Let me explain some of the background. My dad and my mum’s sister died within a couple of months of each other around 7 years ago and we quickly realised that mum wasn’t coping very well, but we assumed that was due to grief and depression. It was probably 2 years before we started to think it might be more than that. My dad had always dealt with everything to do with the house, garden, finances, etc and as Mum is partially sighted my sister and I expected we would have to continue to support her with those sort of things, so a gardener was sorted out, direct debits set up, etc. (I should say at this point that I live in Bristol and my mum, sister and family live in Nottingham – so my sister bears the brunt of things). The first thing we noticed about mum was that she was very uninterested in the home, happy for things to be arranged for her but didn’t want to take any part in the decision making. As I said at this stage we still thought it was grief/depression and hoped it would lift as time went by. It hasn’t changed and one of the things my sister finds most frustrating is that mum doesn’t want any involvement whatsoever with deciding what needs doing. She doesn’t care who does it or what it costs as long as she doesn’t have to know anything about it.
As it’s progressed it has become clearer that she isn’t really cleaning the house, she doesn’t do much washing and she doesn’t eat properly. Although if we talk with her about these things she tells us that she is following a “normal” routine and I think she really does believe that. The conversations are certainly very plausible. Her memory is definitely not what it was – the same topic of conversation comes up time and again in a very short time, she gets confused about the day of the week (but who doesn’t sometimes?) and when she stayed with me in Bristol at Christmas she had a couple of episodes where she got quite disorientated and thought she was still back in Nottingham – although she’d had a couple of sherries at that point. However there are some short-term memories that do stick in her mind. My cousin phoned her unexpectedly to wish her a happy birthday last month and she remembers that, and she is still quite good with the names of people she only meets occasionally e.g. my partner’s brother and family who she only sees maybe once a year. Other memories just disappear within a day or less. Again it frustrates my sister that if, for example, a plumber or electrician needs to call Mum can’t remember why they’re coming or what they said while they were there. Given that she can remember some things it sometimes seems as if the failing to remember is deliberate, especially for things she doesn’t want to deal with like looking after the house. On one occasion she actually wouldn’t believe that a flat roof in her house was leaking, even though you could see it dripping and she kept moving the buckets that my sister put to catch the water – she said they were untidy!
Of course memories from years ago are all very clear.
Mum insists that she eats well and buys the things she likes, but this came to a head when she was diagnosed with severe anaemia and after some hospital tests they concluded it was completely due to poor diet. The staff in the hospital also commented on Mum’s memory. After that she had a cataract operation and again the staff commented on her memory, to the point that the day after the op she couldn’t remember why she was in hospital. I phoned her while she was in hospital and the staff nurse talked to me about their concerns and in a way it was reassuring to know that they were seeing the same things we were.
At the moment mum is still living in her own home, in the same road as my sister, but my sister has been helping her daughter who is having chemotherapy so she’s caught in a real carer’s dilemma. Mum goes shopping locally, collects her pension, can catch the bus to the next town and it seems that recently she has organised a visit to the dentist for a repair to her dentures. Mum used to go on short holidays with my sister’s mother-in-law but she is in her mid-eighties and found it a bit too much being responsible for mum on the last holiday. Up to a few weeks ago they would meet for coffee and shopping once a week but Mum forgot to go a couple of times and it was total panic stations, so they aren’t doing that so regularly at the moment. But to all intents and purposes it could appear to be pretty normal.
My sister has involved Social Services and the Community Psychiatric Nurse, so Mum has had an assessment and seen a Consultant and they have concluded it is early stages of AD. She goes to day care once a week and is having meals delivered on the other weekdays. She doesn’t really like having the meals because she says she doesn’t have any reason to go out shopping, but if she didn’t have them we’re sure she’d live on just chocolate and biscuits.
I suppose my questions are:-
Does this sound like early Alzheimer’s?
Can AD progress so slowly over 7 years or so, or could we be right that depression or something is a factor? There has been some deterioration over the years, e.g. the disorientation only happened this year, but all the major sign have been there right from the start and maybe longer, we don’t know how much dad covered up.
How do you get the doctors and nurses to consider other possibilities? They seem very certain that they are right.
Should we be hands-on in trying to make sure Mum get proper meals and other care, or when she tells us she is fine and looking after herself should we respect that, even if we believe that big parts of that routine are imaginary?
Thanks for taking the time to read this, any advice or comments gratefully received.
My mum who is 77 has recently been diagnosed with the early stages of AD, but in some respects my sister and I aren’t entirely convinced by the diagnosis – denial?! I wonder if our experiences have been shared by anyone else.
Let me explain some of the background. My dad and my mum’s sister died within a couple of months of each other around 7 years ago and we quickly realised that mum wasn’t coping very well, but we assumed that was due to grief and depression. It was probably 2 years before we started to think it might be more than that. My dad had always dealt with everything to do with the house, garden, finances, etc and as Mum is partially sighted my sister and I expected we would have to continue to support her with those sort of things, so a gardener was sorted out, direct debits set up, etc. (I should say at this point that I live in Bristol and my mum, sister and family live in Nottingham – so my sister bears the brunt of things). The first thing we noticed about mum was that she was very uninterested in the home, happy for things to be arranged for her but didn’t want to take any part in the decision making. As I said at this stage we still thought it was grief/depression and hoped it would lift as time went by. It hasn’t changed and one of the things my sister finds most frustrating is that mum doesn’t want any involvement whatsoever with deciding what needs doing. She doesn’t care who does it or what it costs as long as she doesn’t have to know anything about it.
As it’s progressed it has become clearer that she isn’t really cleaning the house, she doesn’t do much washing and she doesn’t eat properly. Although if we talk with her about these things she tells us that she is following a “normal” routine and I think she really does believe that. The conversations are certainly very plausible. Her memory is definitely not what it was – the same topic of conversation comes up time and again in a very short time, she gets confused about the day of the week (but who doesn’t sometimes?) and when she stayed with me in Bristol at Christmas she had a couple of episodes where she got quite disorientated and thought she was still back in Nottingham – although she’d had a couple of sherries at that point. However there are some short-term memories that do stick in her mind. My cousin phoned her unexpectedly to wish her a happy birthday last month and she remembers that, and she is still quite good with the names of people she only meets occasionally e.g. my partner’s brother and family who she only sees maybe once a year. Other memories just disappear within a day or less. Again it frustrates my sister that if, for example, a plumber or electrician needs to call Mum can’t remember why they’re coming or what they said while they were there. Given that she can remember some things it sometimes seems as if the failing to remember is deliberate, especially for things she doesn’t want to deal with like looking after the house. On one occasion she actually wouldn’t believe that a flat roof in her house was leaking, even though you could see it dripping and she kept moving the buckets that my sister put to catch the water – she said they were untidy!
Of course memories from years ago are all very clear.
Mum insists that she eats well and buys the things she likes, but this came to a head when she was diagnosed with severe anaemia and after some hospital tests they concluded it was completely due to poor diet. The staff in the hospital also commented on Mum’s memory. After that she had a cataract operation and again the staff commented on her memory, to the point that the day after the op she couldn’t remember why she was in hospital. I phoned her while she was in hospital and the staff nurse talked to me about their concerns and in a way it was reassuring to know that they were seeing the same things we were.
At the moment mum is still living in her own home, in the same road as my sister, but my sister has been helping her daughter who is having chemotherapy so she’s caught in a real carer’s dilemma. Mum goes shopping locally, collects her pension, can catch the bus to the next town and it seems that recently she has organised a visit to the dentist for a repair to her dentures. Mum used to go on short holidays with my sister’s mother-in-law but she is in her mid-eighties and found it a bit too much being responsible for mum on the last holiday. Up to a few weeks ago they would meet for coffee and shopping once a week but Mum forgot to go a couple of times and it was total panic stations, so they aren’t doing that so regularly at the moment. But to all intents and purposes it could appear to be pretty normal.
My sister has involved Social Services and the Community Psychiatric Nurse, so Mum has had an assessment and seen a Consultant and they have concluded it is early stages of AD. She goes to day care once a week and is having meals delivered on the other weekdays. She doesn’t really like having the meals because she says she doesn’t have any reason to go out shopping, but if she didn’t have them we’re sure she’d live on just chocolate and biscuits.
I suppose my questions are:-
Does this sound like early Alzheimer’s?
Can AD progress so slowly over 7 years or so, or could we be right that depression or something is a factor? There has been some deterioration over the years, e.g. the disorientation only happened this year, but all the major sign have been there right from the start and maybe longer, we don’t know how much dad covered up.
How do you get the doctors and nurses to consider other possibilities? They seem very certain that they are right.
Should we be hands-on in trying to make sure Mum get proper meals and other care, or when she tells us she is fine and looking after herself should we respect that, even if we believe that big parts of that routine are imaginary?
Thanks for taking the time to read this, any advice or comments gratefully received.