This is my first post. I have read a number of the stories on this forum and I am conscious that the concerns and needs that my sister and I have for our mother at this stage are nothing compared with many other users. However, we are starting to get very concerned and do not know what to do, or how to plan for her future.
I will explain the background, but if you live in Bristol or the South West, I have put some specific questions at the bottom of this post and my sister and I would be extremely grateful for any replies to those questions. Please feel free to skip the detail and go straight to the specifics!
Mum is 67 and lives alone in Bristol. I live in Birmingham and my sister in Bristol. Mum was diagnosed with mild cognitive impairment about 12 months ago. Or at least that is the diagnosis that she received, but our own thoughts are that it is already more advanced than "mild".
We started to notice a general decline in mum's memory about 4 years ago. She started to get confused about dates and couldn't remember conversations or stories. Over the past 4 years things have got progressively worse and now, on a bad day, it would not be unusual for her to ask the same question five or six times within the space of half an hour. If we were to ask her what she did yesterday, or what she had for lunch that day, then, on a bad day, she will get very flustered and would not be able to remember at all. I say "on a bad day" because, occasionally, she has days which are markedly better than others.
We are trying to stop asking her questions that we know she will have difficulty answering because if we begin a conversation this way she gets flustered, confused and panics and things quickly spiral downwards and she seems to have a panic attack.
What began as general forgetfulness has now also developed into some rather erratic and eccentric behaviour. For example she likes to walk a lot and recently bought a pair of slippers to walk in as she said they were more comfortable than her shoes which had given her blisters that day!! She is unable to follow a conversation from start to finish, quickly losing concentration which means she flounders in social situations. Her actions also do not always follow her intentions. If she were to go and collect an object from one room she more often than not comes back with something completely different having forgotten what she went for or where to find it. She temporarily 'loses' her house keys, purse, car keys or phone daily, but has no ability to retrace her steps to think through where she may have left them - often because she is so panicked that she can't even attempt to think clearly. Often she has not 'lost' them at all just can't find them quickly enough to not go into "panic mode".
She is embarrassed about her diagnosis and only has my sister and me, and now a couple of close friends who she will confide in. She used to be a gregarious, outgoing, sociable, loving, caring and extrovert character (albeit always a little eccentric!). Slowly she is becoming more and more withdrawn and introverted. She confided in my sister recently that some days she doesn't bother to get out of bed because there's 'no point' and she shuns social situations to the point where there is no structure to her days and sees only a very few people every week.
Mum has one close friend who has been very good to her and who she trusts implicitly. Her friend has accompanied her to the Memory Clinic in Bristol (on a referral from her GP) and my sister has also attended these appointments with her. She was tested and given some treatment in the form of B-vitamins and a mild anti-depressant together with high blood pressure and cholesterol tablets (which she had been taking for sometime previous to her diagnosis). It was decided, despite poor test results, that she could not be offered any of the more Alzheimer specific drugs which she was very disappointed about. However she wasn't able to remember (even with the aid of labels, notes and pill boxes) which pills needed to be taken when. Much of the problem stemming from not knowing what day it was or whether it was day or night if she had been in bed all day.
Recently she decided the pills made her feel worse and she decided to stop taking them completely. Her GP told her that it was her decision and seemed quite relaxed about her stopping the B-vitamin complex and anti depressant. But recently, encouraged by her friend, she has started taking the anti depressant again. My sister and I suspect that if she didn't drink wine (not to excess but enough to be 'tipsy' most evenings) she would not feel so rough on the medication but loneliness drives her to drink and she won't be told.
Mum is desperately lonely. She hates living on her own and has never got over the fact that her marriage broke down and she has been left to fend for herself in old age. She used to have many many friends, but it is clear (to us at least) that she has lost touch with people because she is so scared and embarrassed by her condition. Every time I speak with her, she tells me how lonely she is. She has not worked since my sister and I were born and she has always been useless with money (as you can imagine, her current condition is not helpful for this).
My sister and I have a lasting power of attorney and I have met recently with her financial adviser to ensure that we are aware of her financial position as she herself is not. I have agreed with her financial adviser that I will attend the next meeting she has with him. Currently, I have no idea how much money she has in the bank and I wouldn't dream of asking this question of her adviser behind her back.
Mum is visibly scared about and acutely aware of what is happening to her memory and has told both me and my sister this on numerous occasions.
Recently, a friend was staying with our mother and was very concerned to see that a lot of her food in the fridge was rotten and cereal packets were infested with insects. Our mother was completely oblivious and would be mortified if she had known. This is an example of how she has 'given up' looking after herself.
Our mother is scared and so are we. My sister sees Mum almost every day at the moment as she is on maternity leave. Mum loves the time she spends with her daughter and the new baby but my sister is very scared about what will happen when this support/company goes in the Spring next year when she returns to work. Mum is still fit and active - she plays tennis twice a week and walks daily (seemingly as a way to alleviate her boredom). Mum is still able to drive (although really struggles with directions these days). It is extremely upsetting for us to see someone who was such a wonderful and loving mother to us become the shadow of her former self. We want to do ANYTHING we can to make her life better and, most of all, allow her to maintain her dignity in what we are sure will be difficult years ahead.
- Do you have experience of looking out for (we are not at the stage of looking after) someone with early onset dementia in Bristol or the South West? If so, can you offer us any advice/suggestions?
- For the time being, how do we monitor Mum from a distance? There seems to be no single person in the health system (GP, consultant etc) who we can talk to owing to confidentiality issues. Her diagnosis does not seem to fit what we see, which is a condition that is more advanced than "mild".
- Are there any support groups out there (in the West Country specifically) where our mother could meet people in a similar situation where they could at least swop coping strategies?
- ANY ADVICE AT ALL WOULD BE SO GRATEFULLY RECEIVED AS WE REALLY DO NOT KNOW WHAT TO DO OR WHO TO ASK.
Many thanks in anticipation.
I will explain the background, but if you live in Bristol or the South West, I have put some specific questions at the bottom of this post and my sister and I would be extremely grateful for any replies to those questions. Please feel free to skip the detail and go straight to the specifics!
Mum is 67 and lives alone in Bristol. I live in Birmingham and my sister in Bristol. Mum was diagnosed with mild cognitive impairment about 12 months ago. Or at least that is the diagnosis that she received, but our own thoughts are that it is already more advanced than "mild".
We started to notice a general decline in mum's memory about 4 years ago. She started to get confused about dates and couldn't remember conversations or stories. Over the past 4 years things have got progressively worse and now, on a bad day, it would not be unusual for her to ask the same question five or six times within the space of half an hour. If we were to ask her what she did yesterday, or what she had for lunch that day, then, on a bad day, she will get very flustered and would not be able to remember at all. I say "on a bad day" because, occasionally, she has days which are markedly better than others.
We are trying to stop asking her questions that we know she will have difficulty answering because if we begin a conversation this way she gets flustered, confused and panics and things quickly spiral downwards and she seems to have a panic attack.
What began as general forgetfulness has now also developed into some rather erratic and eccentric behaviour. For example she likes to walk a lot and recently bought a pair of slippers to walk in as she said they were more comfortable than her shoes which had given her blisters that day!! She is unable to follow a conversation from start to finish, quickly losing concentration which means she flounders in social situations. Her actions also do not always follow her intentions. If she were to go and collect an object from one room she more often than not comes back with something completely different having forgotten what she went for or where to find it. She temporarily 'loses' her house keys, purse, car keys or phone daily, but has no ability to retrace her steps to think through where she may have left them - often because she is so panicked that she can't even attempt to think clearly. Often she has not 'lost' them at all just can't find them quickly enough to not go into "panic mode".
She is embarrassed about her diagnosis and only has my sister and me, and now a couple of close friends who she will confide in. She used to be a gregarious, outgoing, sociable, loving, caring and extrovert character (albeit always a little eccentric!). Slowly she is becoming more and more withdrawn and introverted. She confided in my sister recently that some days she doesn't bother to get out of bed because there's 'no point' and she shuns social situations to the point where there is no structure to her days and sees only a very few people every week.
Mum has one close friend who has been very good to her and who she trusts implicitly. Her friend has accompanied her to the Memory Clinic in Bristol (on a referral from her GP) and my sister has also attended these appointments with her. She was tested and given some treatment in the form of B-vitamins and a mild anti-depressant together with high blood pressure and cholesterol tablets (which she had been taking for sometime previous to her diagnosis). It was decided, despite poor test results, that she could not be offered any of the more Alzheimer specific drugs which she was very disappointed about. However she wasn't able to remember (even with the aid of labels, notes and pill boxes) which pills needed to be taken when. Much of the problem stemming from not knowing what day it was or whether it was day or night if she had been in bed all day.
Recently she decided the pills made her feel worse and she decided to stop taking them completely. Her GP told her that it was her decision and seemed quite relaxed about her stopping the B-vitamin complex and anti depressant. But recently, encouraged by her friend, she has started taking the anti depressant again. My sister and I suspect that if she didn't drink wine (not to excess but enough to be 'tipsy' most evenings) she would not feel so rough on the medication but loneliness drives her to drink and she won't be told.
Mum is desperately lonely. She hates living on her own and has never got over the fact that her marriage broke down and she has been left to fend for herself in old age. She used to have many many friends, but it is clear (to us at least) that she has lost touch with people because she is so scared and embarrassed by her condition. Every time I speak with her, she tells me how lonely she is. She has not worked since my sister and I were born and she has always been useless with money (as you can imagine, her current condition is not helpful for this).
My sister and I have a lasting power of attorney and I have met recently with her financial adviser to ensure that we are aware of her financial position as she herself is not. I have agreed with her financial adviser that I will attend the next meeting she has with him. Currently, I have no idea how much money she has in the bank and I wouldn't dream of asking this question of her adviser behind her back.
Mum is visibly scared about and acutely aware of what is happening to her memory and has told both me and my sister this on numerous occasions.
Recently, a friend was staying with our mother and was very concerned to see that a lot of her food in the fridge was rotten and cereal packets were infested with insects. Our mother was completely oblivious and would be mortified if she had known. This is an example of how she has 'given up' looking after herself.
Our mother is scared and so are we. My sister sees Mum almost every day at the moment as she is on maternity leave. Mum loves the time she spends with her daughter and the new baby but my sister is very scared about what will happen when this support/company goes in the Spring next year when she returns to work. Mum is still fit and active - she plays tennis twice a week and walks daily (seemingly as a way to alleviate her boredom). Mum is still able to drive (although really struggles with directions these days). It is extremely upsetting for us to see someone who was such a wonderful and loving mother to us become the shadow of her former self. We want to do ANYTHING we can to make her life better and, most of all, allow her to maintain her dignity in what we are sure will be difficult years ahead.
- Do you have experience of looking out for (we are not at the stage of looking after) someone with early onset dementia in Bristol or the South West? If so, can you offer us any advice/suggestions?
- For the time being, how do we monitor Mum from a distance? There seems to be no single person in the health system (GP, consultant etc) who we can talk to owing to confidentiality issues. Her diagnosis does not seem to fit what we see, which is a condition that is more advanced than "mild".
- Are there any support groups out there (in the West Country specifically) where our mother could meet people in a similar situation where they could at least swop coping strategies?
- ANY ADVICE AT ALL WOULD BE SO GRATEFULLY RECEIVED AS WE REALLY DO NOT KNOW WHAT TO DO OR WHO TO ASK.
Many thanks in anticipation.
Every word is familiar. Dad lives alone too and it is SO hard to help someone when you can't be there! You don't even know what the problems ARE half the time, never mind being able to fix them. We are currently trying to find a solution to this dilemma ourselves, and are considering asking Dad's community nurse to arrange for someone to come round once or twice a day to spend time with him and observe him, if nothing else, but also to maybe take him shopping or make meals for him, or to help him take his medication. I would think that similar services would be available in your area. Does your mum have a community nurse? Or how about an Occupational Therapist? Speak to either of these people about your concerns, they should be able to arrange some sort of care arrangements for your mum. If she doesn't have either of these people, you need to speak to the doctor again and INSIST she needs more help that she's getting. Often, I suspect the doctors assume everything is OK if the carer/family isn't calling up and begging for more help. I find regular phone calls to the doctor are the only thing that keep the flow of help going - whenever I feel it is drying up, I call someone and miraculously Dad gets sent his next appointment quicker, or gets a prescription, or gets referred somewhere or other. I don't even have to argue or put a case forward - just the fact I have called seems to keep them on their toes. Just keep on at them or they will assume all is well. They can't help if they don't know. xxxxx
