Hi all,
My mum has not yet had a diagnosis, but I'm pretty sure she will. I do know how bad it can all get as my aunt suffered for 10 years (or rather her son did), and I've talked to lots of people about it. But it's the early stages I know nothing about.
It's a long tale cos I have so many questions. I'll put the questions in capitals, so you'll know what they are.
Dad died 3 years ago, mum is now 80. Symptoms started about 14 months ago. At first, nothing specific, I just noted odd bits and pieces like constantly counting the money in her purse, not seeming able to give the right change, not believing me when I said she had 3 bank accounts, general forgetfulness, repeating herself. It might seem unkind, but she has never been the brightest in the bunch, so when she said her clock was broken and I said it might need a new battery and she didn't understand me, I just put it down to her not being very bright. Then there was an episode with a broken table lamp that she insisted on ramming a new bulb into when the lamp was actually dangerous, and she started screaming at me instead of being pleased I was sorting it out.
Next she started losing her way in the supermarket, and buying totally unsuitable foods if I didn't watch her. Then she complained of her back hurting while dragging the vacuum cleaner upstairs and I told her she had another one upstairs. She got very angry and insisted that she hadn't, but she had. She said she didn't know about it at all.
Then came the revalation that my dad had been to see her. I told her it was her imagination. At first it was just once in a while, but gradually she insisted he was there all the time. That's when I took her to the doc for the first round of mental tests and blood tests. Borderline, they said. But it got worse. She started cooking meals for him (so she said, I don't live with her, but I did catch her boiling an egg for him). It doesn't bother her that he visits, but that he won't talk to her and he won't eat. Now he brings two men and a woman and they all sleep in the single bed in the spare room. Dad goes out to work, and down to the pub. She even asked her grand-daughters who phoned if they wanted to talk to him. She phoned me to ask me if he was at my house. So off to the doctor again. Borderline.
Things started to move when she called the doctor out to see Dad, and when the doctor arrived - no Dad. So we have now seen a Psychiatrist for more tests - borderline.
In between calling out the doctor and seeing the Psychiatrist, Dad's sister died. She was concerned that he needed to be told, and I found a note she had written to him - "John, bad news, your Mary has died".
Up to that point, my mum hadn't mentioned dad's recovery to anyone outside the family, but I started to get phone calls from her neighbours telling me they were concerned, she was out in the garden looking for him. One night they spotted a strange man approaching her door and she let him in. They went round and asked who he was, he said from the council, they asked for his ID and he legged it fast. Mum has totally forgotten this, she probably thinks it was my Dad. She's also had two nasty falls in the past 10 months needing weeks of treatment but she's forgotten them. She's forgotten some of her relatives, denies that she has seen her beloved niece from New Zealand in the past year, says people haven't phoned in weeks when I know they have. Even accused me of not being in touch.
I've never really been involved in my mum's day to day life in the past 35 years, we were never in each other's pockets, we saw mum and dad less than once a week and my dad was a lively conversationalist, we didn't talk about humdrum stuff. So I now find that I don't know who her friends are, I only know a couple of neighbours, I don't know how her week pans out. I'm starting to learn.
About a month ago, the neighbours told me she was up at 5 every morning vacuuming, but it didn't bother them as they are early birds. She told me she got up at 7.30. Then she was up at 3.30 when the milkman called, but didn't start vacuuming till 5. Now she's up at 3.30 with the TV full on!!!
Also a month ago, she arrived at the old ladies afternoon tea club at 8.45 in the morning. She said the clocks were wrong, and all the old ladies turned up at 8.45 a.m., and the telly was wrong as well. I checked her clocks, they were all fine. She would not accept that she had made a mistake.
Two weeks ago we were going for a brain scan. Tuesday afternoon. I said I would collect her at 4 p.m. Monday 10.30 p.m. she wanted to know where I was and why it was dark. Something was wrong with the clocks again, she said. Tuesday morning 10.30 a.m. she wanted to know where I was again, we will be late, she said. No mum it is only morning. I arrived at 4 p.m., she had no idea why I was there, thought it was a social call (which I don't do). I noticed her drinking sherry, she normally has a glass in the evening. I mentioned that it was a bit early and she thought nothing of it. I then get concerned that she is drinking too much and check the cupboard to see if last week's bottle has been drunk. There are nine bottles in there!!! On the way to the hospital she remarked how odd it was to be having a scan on a Sunday night. It is Tuesday afternoon, I said. She would have none of it, and still won't.
This Sunday she rang at 10.45 a.m. to ask where I was. At home I said. Did you go to church? No, I don't go to church any more. But you were here at 9 O'clock when we set off. No I wasn't, I was at home. Wouldn't have it. I arrived at 2 p.m. to take her to Tesco, her neighbour came out to tell me she had phoned the man who takes her to church at 5 a.m. I asked her why she had done that. I needed to know who was picking me up, she said. Mum, you mustn't phone people at 5 a.m. Oh, it didn't matter, I needed to know. I ask for the man's name and phone number, she doesn't want to give it to me. She does, but she isn't happy about it. He tells me that she rang another person at 3.30 a.m. wanting to know who was picking her up, and the lady said Mr C is coming for you. So he got a phone call as well. She tells me (again) that all the clocks were wrong and everyone was confused, and it wasn't just her. I told her she mustn't put the TV on at 3.30 a.m. I don't, she says, your dad puts it on!!!!
I have checked that she can tell the time properly. All her clocks are right, and clear and easy to read. I've noticed that she has two clocks in her living room and kitchen (has had for several months), and is constantly checking her wristwatch. It strikes me that she is "losing track of time", i.e. she checks the time fine, then ten minutes later imagines that several hours have gone by. I noticed when I took her for the brain scan, it took us about 25 minutes in the car, and she thought it had taken over two hours.
Then the sad bit. Two sad bits. We are going to the doc again tomorrow at his request. Not sure what for. She says she won't go. I say she must. We need to find out why she is behaving strangely. She doesn't think she is. Then she says "you think I am going off my rocker, don't you?". No mum (lie?), the brain wears out just like the rest of the body when you get old, we need to see if we can help you".
Then I sighed at the enormity of it all and said "I don't know what we're going to do with you", and she said "Just lock me away if that's what you want". I tried explaining that people don't get locked away these days, we try to find ways of letting them live their lives at home, but they may need help. Her face is totally blank. In fact, I am seeing the blank face a great deal. She simply does not see that anything is amiss, and at various points she said "Oh, just leave me alone, I don't know the answers to your questions".
My daughter rang her last night about 10 p.m. Mum said "It is dark here, is it dark where you are? Yes, said daughter, but it is night-time. Oh. Later on, it gets repeated with the same response, and then mum asked her "What are you doing for the rest of the day?". Er, Grandma, it is nearly bedtime. Oh.
So what are my questions? Well, my mind has gone a blank now!
1. AM I BEING PREMATURE IN IMAGINING THAT THIS IS DEMENTIA?
2. HOW DO I STOP HER FROM PHONING PEOPLE AT 3.30 A.M.? OR HAVING THE TV ON FULL BELT (will ask the doc tomorrow for a hearing test. Have also read up about loops and infrared signals - anybody tried them?)
3. BECAUSE OF THIS APPARENT DISORIENTATION ABOUT DAY/NIGHT, SHOULD I BE CONCERNED ABOUT WHETHER OR NOT SHE IS EATING/TAKING HER MEDICATION? AND IF SO, HOW DO I RESOLVE IT? Being selfish, I work full time (though hours can be flexible to a point), do I have to give up the job/work shorter hours (which I could do, but don't want to). At what point do you accept that you can't carry on with your own life as you planned?
4. I HAVE AN ENDURING POWER OF ATTORNEY TAKEN OUT BEFORE ANY SIGNS OF THIS APPEARED. WHEN IS THE RIGHT TIME TO REGISTER IT? The guidance says I should register it when I have reason to believe that she is becoming mentally incapable of managing her affairs. Am I at that stage? The thing is, she doesn't seem incapable of managing money matters (apart from forgetting how to write a cheque out and sending it off without any covering letter, so the recipient didn't know what it was for!). She has three bank accounts, not a great deal of money, but enough for any repairs/replacements etc. No investments or anything like that. She draws out her weekly state pension and pays bills in cash. Am I really ready to take away from her the independence of paying her window cleaner, milkman, hairdresser, utility bills etc.? But the guidance says that once a POA has been registered the "donor" has no control over their own financial affairs. Perhaps I can compromise and allow her free access to the account into which her pension goes, but I control the others? Is that possible?
5. SHE HAS A HOLIDAY BOOKED WITH AN ELDERLY FRIEND IN AUGUST, CORNWALL. DO YOU THINK IT IS SAFE FOR HER TO GO?
Sorry, I am drained now.
I'd really appreciate any comments on the above questions, and any other advice that you think would be useful. I'm not very good on managing these "threads", I'm also on Genes Reunited and get muddled!
Thanks everyone.
Maragaret
My mum has not yet had a diagnosis, but I'm pretty sure she will. I do know how bad it can all get as my aunt suffered for 10 years (or rather her son did), and I've talked to lots of people about it. But it's the early stages I know nothing about.
It's a long tale cos I have so many questions. I'll put the questions in capitals, so you'll know what they are.
Dad died 3 years ago, mum is now 80. Symptoms started about 14 months ago. At first, nothing specific, I just noted odd bits and pieces like constantly counting the money in her purse, not seeming able to give the right change, not believing me when I said she had 3 bank accounts, general forgetfulness, repeating herself. It might seem unkind, but she has never been the brightest in the bunch, so when she said her clock was broken and I said it might need a new battery and she didn't understand me, I just put it down to her not being very bright. Then there was an episode with a broken table lamp that she insisted on ramming a new bulb into when the lamp was actually dangerous, and she started screaming at me instead of being pleased I was sorting it out.
Next she started losing her way in the supermarket, and buying totally unsuitable foods if I didn't watch her. Then she complained of her back hurting while dragging the vacuum cleaner upstairs and I told her she had another one upstairs. She got very angry and insisted that she hadn't, but she had. She said she didn't know about it at all.
Then came the revalation that my dad had been to see her. I told her it was her imagination. At first it was just once in a while, but gradually she insisted he was there all the time. That's when I took her to the doc for the first round of mental tests and blood tests. Borderline, they said. But it got worse. She started cooking meals for him (so she said, I don't live with her, but I did catch her boiling an egg for him). It doesn't bother her that he visits, but that he won't talk to her and he won't eat. Now he brings two men and a woman and they all sleep in the single bed in the spare room. Dad goes out to work, and down to the pub. She even asked her grand-daughters who phoned if they wanted to talk to him. She phoned me to ask me if he was at my house. So off to the doctor again. Borderline.
Things started to move when she called the doctor out to see Dad, and when the doctor arrived - no Dad. So we have now seen a Psychiatrist for more tests - borderline.
In between calling out the doctor and seeing the Psychiatrist, Dad's sister died. She was concerned that he needed to be told, and I found a note she had written to him - "John, bad news, your Mary has died".
Up to that point, my mum hadn't mentioned dad's recovery to anyone outside the family, but I started to get phone calls from her neighbours telling me they were concerned, she was out in the garden looking for him. One night they spotted a strange man approaching her door and she let him in. They went round and asked who he was, he said from the council, they asked for his ID and he legged it fast. Mum has totally forgotten this, she probably thinks it was my Dad. She's also had two nasty falls in the past 10 months needing weeks of treatment but she's forgotten them. She's forgotten some of her relatives, denies that she has seen her beloved niece from New Zealand in the past year, says people haven't phoned in weeks when I know they have. Even accused me of not being in touch.
I've never really been involved in my mum's day to day life in the past 35 years, we were never in each other's pockets, we saw mum and dad less than once a week and my dad was a lively conversationalist, we didn't talk about humdrum stuff. So I now find that I don't know who her friends are, I only know a couple of neighbours, I don't know how her week pans out. I'm starting to learn.
About a month ago, the neighbours told me she was up at 5 every morning vacuuming, but it didn't bother them as they are early birds. She told me she got up at 7.30. Then she was up at 3.30 when the milkman called, but didn't start vacuuming till 5. Now she's up at 3.30 with the TV full on!!!
Also a month ago, she arrived at the old ladies afternoon tea club at 8.45 in the morning. She said the clocks were wrong, and all the old ladies turned up at 8.45 a.m., and the telly was wrong as well. I checked her clocks, they were all fine. She would not accept that she had made a mistake.
Two weeks ago we were going for a brain scan. Tuesday afternoon. I said I would collect her at 4 p.m. Monday 10.30 p.m. she wanted to know where I was and why it was dark. Something was wrong with the clocks again, she said. Tuesday morning 10.30 a.m. she wanted to know where I was again, we will be late, she said. No mum it is only morning. I arrived at 4 p.m., she had no idea why I was there, thought it was a social call (which I don't do). I noticed her drinking sherry, she normally has a glass in the evening. I mentioned that it was a bit early and she thought nothing of it. I then get concerned that she is drinking too much and check the cupboard to see if last week's bottle has been drunk. There are nine bottles in there!!! On the way to the hospital she remarked how odd it was to be having a scan on a Sunday night. It is Tuesday afternoon, I said. She would have none of it, and still won't.
This Sunday she rang at 10.45 a.m. to ask where I was. At home I said. Did you go to church? No, I don't go to church any more. But you were here at 9 O'clock when we set off. No I wasn't, I was at home. Wouldn't have it. I arrived at 2 p.m. to take her to Tesco, her neighbour came out to tell me she had phoned the man who takes her to church at 5 a.m. I asked her why she had done that. I needed to know who was picking me up, she said. Mum, you mustn't phone people at 5 a.m. Oh, it didn't matter, I needed to know. I ask for the man's name and phone number, she doesn't want to give it to me. She does, but she isn't happy about it. He tells me that she rang another person at 3.30 a.m. wanting to know who was picking her up, and the lady said Mr C is coming for you. So he got a phone call as well. She tells me (again) that all the clocks were wrong and everyone was confused, and it wasn't just her. I told her she mustn't put the TV on at 3.30 a.m. I don't, she says, your dad puts it on!!!!
I have checked that she can tell the time properly. All her clocks are right, and clear and easy to read. I've noticed that she has two clocks in her living room and kitchen (has had for several months), and is constantly checking her wristwatch. It strikes me that she is "losing track of time", i.e. she checks the time fine, then ten minutes later imagines that several hours have gone by. I noticed when I took her for the brain scan, it took us about 25 minutes in the car, and she thought it had taken over two hours.
Then the sad bit. Two sad bits. We are going to the doc again tomorrow at his request. Not sure what for. She says she won't go. I say she must. We need to find out why she is behaving strangely. She doesn't think she is. Then she says "you think I am going off my rocker, don't you?". No mum (lie?), the brain wears out just like the rest of the body when you get old, we need to see if we can help you".
Then I sighed at the enormity of it all and said "I don't know what we're going to do with you", and she said "Just lock me away if that's what you want". I tried explaining that people don't get locked away these days, we try to find ways of letting them live their lives at home, but they may need help. Her face is totally blank. In fact, I am seeing the blank face a great deal. She simply does not see that anything is amiss, and at various points she said "Oh, just leave me alone, I don't know the answers to your questions".
My daughter rang her last night about 10 p.m. Mum said "It is dark here, is it dark where you are? Yes, said daughter, but it is night-time. Oh. Later on, it gets repeated with the same response, and then mum asked her "What are you doing for the rest of the day?". Er, Grandma, it is nearly bedtime. Oh.
So what are my questions? Well, my mind has gone a blank now!
1. AM I BEING PREMATURE IN IMAGINING THAT THIS IS DEMENTIA?
2. HOW DO I STOP HER FROM PHONING PEOPLE AT 3.30 A.M.? OR HAVING THE TV ON FULL BELT (will ask the doc tomorrow for a hearing test. Have also read up about loops and infrared signals - anybody tried them?)
3. BECAUSE OF THIS APPARENT DISORIENTATION ABOUT DAY/NIGHT, SHOULD I BE CONCERNED ABOUT WHETHER OR NOT SHE IS EATING/TAKING HER MEDICATION? AND IF SO, HOW DO I RESOLVE IT? Being selfish, I work full time (though hours can be flexible to a point), do I have to give up the job/work shorter hours (which I could do, but don't want to). At what point do you accept that you can't carry on with your own life as you planned?
4. I HAVE AN ENDURING POWER OF ATTORNEY TAKEN OUT BEFORE ANY SIGNS OF THIS APPEARED. WHEN IS THE RIGHT TIME TO REGISTER IT? The guidance says I should register it when I have reason to believe that she is becoming mentally incapable of managing her affairs. Am I at that stage? The thing is, she doesn't seem incapable of managing money matters (apart from forgetting how to write a cheque out and sending it off without any covering letter, so the recipient didn't know what it was for!). She has three bank accounts, not a great deal of money, but enough for any repairs/replacements etc. No investments or anything like that. She draws out her weekly state pension and pays bills in cash. Am I really ready to take away from her the independence of paying her window cleaner, milkman, hairdresser, utility bills etc.? But the guidance says that once a POA has been registered the "donor" has no control over their own financial affairs. Perhaps I can compromise and allow her free access to the account into which her pension goes, but I control the others? Is that possible?
5. SHE HAS A HOLIDAY BOOKED WITH AN ELDERLY FRIEND IN AUGUST, CORNWALL. DO YOU THINK IT IS SAFE FOR HER TO GO?
Sorry, I am drained now.
I'd really appreciate any comments on the above questions, and any other advice that you think would be useful. I'm not very good on managing these "threads", I'm also on Genes Reunited and get muddled!
Thanks everyone.
Maragaret