my mum has been diagnosed with dementia. She lives in a bungalow, and can manage at the moment. I live 150 miles away from her. I just need help as to the next step. thank you.
what can i do for my mum.
- Thread starter carole robson
- Start date
Hi welcome to talking point
how is your mother coping with excepting that she now has dementia can you talk openly about it to your mother ?
Try not worrying too much until the next stage happen.
This is easy said than done I know from experience
Other idea is see if you can get anyone to come into help your mother with cleaning the house (if your mother does not mind) Someone that could befriend your mother from her local AZ society, as I know some groups offer that voluntary.
Does your mother live alone or with your father?
how is your mother coping with excepting that she now has dementia can you talk openly about it to your mother ?
Try not worrying too much until the next stage happen.
This is easy said than done I know from experience
Other idea is see if you can get anyone to come into help your mother with cleaning the house (if your mother does not mind) Someone that could befriend your mother from her local AZ society, as I know some groups offer that voluntary.
Does your mother live alone or with your father?
Thank you soo much for your reply, my mum lives on her own, she will not tolerate the word dementia being used. What is the next stage you mention.
Your more then welcome. sounds like my mother also in not tolerating the word dementia , because in my mother generation it was a negative word ( stigma )
From my experience with my mother the next stage once mum was diagnosed was not being able to care for her own needs, like washing herself.
There were other factors like not being able to organise her finances
But the more dramatic changes, more highlighted was not having the ability to care for her physical needs.
That why I was thinking of that if you could get someone in to help your mother around the house, she could help you with updates in how your mother coping with her dementia as you live so far away.
saying" your memory is not too good " is a way round the dreaded word dementia and is also true...getting help in via someone cleaning/general helping out is a great start and opens the way for a time your mother may need more help in the daytimes to keep her in her own home.
How often do you visit, Carole, and does any other family or local friends visit your mum regularly, or more frequently than you do? You may find it difficult to tell, at a distance, just how well your mum really is coping with things.
When you visit, does she cook for you and do the meals come out all right? If you are cooking for her, how do you know that she is cooking OK for herself when you are not there?
It's important to get finances sorted out now, before things get in a right muddle. The things I did at first were ....
1. As each utility bill came in, I phoned up and made sure that all were payable in future by direct debit. Before that, my mum used to walk to the Post Office and pay them there. When you phone up (in your mum's name), your mum will have to be there to tell them it's OK for her daughter to speak on her behalf, but you can give her debit card details so payments are made automatically. I was able to do this as I visit weekly. If you are not there that often, then you'll need to try and find previous bills in the house and see if they say direct debit on them. And obviously, ask your mum how she handles the bills as she might still have a good memory about that.
2. I went to the bank with my parents and had myself put on their account, NOT as joint account holder (that could make you tax liable) but as THIRD PARTY ACCESS FOR ADMINISTRATION PURPOSES. Now I can write and sign cheques, and sign direct debit instruction forms for them. I did not say to them that my mum was incapable, as some banks will freeze the account until Power of Attorney is properly organised. I just said I wanted to help keep an eye on things. (My mum has dementia, my dad is blind but still organises and 'watches' his bank account by phone).
3. I also got to know my parents' money situation, where they kept all the papers, how much was invested, etc. As papers come in the post, like bonds needing renewal, I fill out the forms for them and get them to sign.
4. We asked friends of theirs to come over and help us sign Financial Power of Attorney forms, and sent them off to be registered so they are now ready for use when I need to. This is very important. If your mum becomes unable to handle all her finances, and you take it all over, you will have to send copies of the Power of Attorney that you have been given to her finance institutions (Banks, National Savings, etc). You would need it if you had to sell the bungalow on her behalf, and to organise big kinds of finance like if she ever needed to go into care and you had to organise large sums of money. If you don't do it now, when your mum gets too incapable and cannot understand what she is signing, you will have to apply for a more complicated and expensive thing called Deputyship. So, organise the Power of Attorney now if you haven't got one already.
Here is a factsheet on Powers of Attorney -
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154
At the top of the page you'll see Factsheets on a tab. There are many of them covering a wide range of issues and problems.
Dementia is seen as a dirty word by the elderly, maybe because it's too close to the word "demented". I used "memory problems" around my mum for a while, especially when talking to someone else in front of her. But she gradually got used to it when it slipped in. She seemed relieved when told it was an illness of the mind, as that seemed to take away her sense of responsibility for having done this to herself in some way, ie, it wasn't her fault she was now like this.
When you visit, does she cook for you and do the meals come out all right? If you are cooking for her, how do you know that she is cooking OK for herself when you are not there?
It's important to get finances sorted out now, before things get in a right muddle. The things I did at first were ....
1. As each utility bill came in, I phoned up and made sure that all were payable in future by direct debit. Before that, my mum used to walk to the Post Office and pay them there. When you phone up (in your mum's name), your mum will have to be there to tell them it's OK for her daughter to speak on her behalf, but you can give her debit card details so payments are made automatically. I was able to do this as I visit weekly. If you are not there that often, then you'll need to try and find previous bills in the house and see if they say direct debit on them. And obviously, ask your mum how she handles the bills as she might still have a good memory about that.
2. I went to the bank with my parents and had myself put on their account, NOT as joint account holder (that could make you tax liable) but as THIRD PARTY ACCESS FOR ADMINISTRATION PURPOSES. Now I can write and sign cheques, and sign direct debit instruction forms for them. I did not say to them that my mum was incapable, as some banks will freeze the account until Power of Attorney is properly organised. I just said I wanted to help keep an eye on things. (My mum has dementia, my dad is blind but still organises and 'watches' his bank account by phone).
3. I also got to know my parents' money situation, where they kept all the papers, how much was invested, etc. As papers come in the post, like bonds needing renewal, I fill out the forms for them and get them to sign.
4. We asked friends of theirs to come over and help us sign Financial Power of Attorney forms, and sent them off to be registered so they are now ready for use when I need to. This is very important. If your mum becomes unable to handle all her finances, and you take it all over, you will have to send copies of the Power of Attorney that you have been given to her finance institutions (Banks, National Savings, etc). You would need it if you had to sell the bungalow on her behalf, and to organise big kinds of finance like if she ever needed to go into care and you had to organise large sums of money. If you don't do it now, when your mum gets too incapable and cannot understand what she is signing, you will have to apply for a more complicated and expensive thing called Deputyship. So, organise the Power of Attorney now if you haven't got one already.
Here is a factsheet on Powers of Attorney -
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154
At the top of the page you'll see Factsheets on a tab. There are many of them covering a wide range of issues and problems.
Dementia is seen as a dirty word by the elderly, maybe because it's too close to the word "demented". I used "memory problems" around my mum for a while, especially when talking to someone else in front of her. But she gradually got used to it when it slipped in. She seemed relieved when told it was an illness of the mind, as that seemed to take away her sense of responsibility for having done this to herself in some way, ie, it wasn't her fault she was now like this.
Last edited:
This has been posted on Talking point few times over the years.
Just thought I would re post it as a reminder .
Compassionate Communication with the Memory Impaired
by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver
DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.
DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.
Remember
You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.
They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.
Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.
Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.
Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”
Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”
They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.
Examples
Don’t reason
Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”
Don’t argue
Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”
Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.
Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”
Don’t question recent memory
Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”
Don’t take it personally!
Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?
Do repeat exactly
Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."
Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."
Used with permission from Ellen Warner at Ageless Design
Summer 2001 www.agelessdesign.com
Liz has given her permission. Please provide a link back to the article on our web site.
Thank you,
Ellen Warner
Just thought I would re post it as a reminder .
Compassionate Communication with the Memory Impaired
by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver
DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.
DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.
Remember
You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.
They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.
Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.
Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.
Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”
Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”
They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.
Examples
Don’t reason
Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”
Don’t argue
Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”
Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.
Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”
Don’t question recent memory
Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”
Don’t take it personally!
Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?
Do repeat exactly
Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."
Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."
Used with permission from Ellen Warner at Ageless Design
Summer 2001 www.agelessdesign.com
Liz has given her permission. Please provide a link back to the article on our web site.
Thank you,
Ellen Warner
Poa
re POAs I had to do these for my Mum who also refuses to use/accept the word dementia. There is a fantastic online site at wwwdottenminutewilldotcodotuk that you can comeplet, ahve checked and then printed legally binding POAs in (strangely) less than 10 minutes. It was a very quick efficient service and the documents were both emailed (to me) and posted to my Mum (who then subsequnetly pout tehm somewhere safe + we haven't seen them since - hence the benefit of the email version!)
Good luck - it is hard living a long way away - i'm only 45 miles away but still prohibitive as I have a very young family and work full time and can't be at Mum's very often.
re POAs I had to do these for my Mum who also refuses to use/accept the word dementia. There is a fantastic online site at wwwdottenminutewilldotcodotuk that you can comeplet, ahve checked and then printed legally binding POAs in (strangely) less than 10 minutes. It was a very quick efficient service and the documents were both emailed (to me) and posted to my Mum (who then subsequnetly pout tehm somewhere safe + we haven't seen them since - hence the benefit of the email version!)
Good luck - it is hard living a long way away - i'm only 45 miles away but still prohibitive as I have a very young family and work full time and can't be at Mum's very often.
Hello Carole,
a diagnosis of dementia is very frightening both for you and your mum. One thing I would say is that no two people with dementia seem to follow the same track so do not automatically assume every bad symptom will happen to your mum.
At the moment she is managing. Try to get her to accept a little help at this stage even if you have to think up a not quite truthful reason for this so she accepts it. If you can get someone to go in for an hour a week at first, just to help her, then you will have a eye kept on any developing difficulties before they get too bad.
Getting bills on DD is a good idea but do not tell her this is because you think she will get in a muddle but rather say something like " I know you pay by cheque now but I,ve heard that although the government did not get rid of cheques as they said they would this is now back on the agenda" or appeal to her thriftiness as it is usually cheaper to pay by DD.
With regard to POA this is really important. We left this too late with my mum and had to go for Deputyship which was much more expensive rather than POA. Again I would stress to her that this is just futureproofing only to be used if and when needed.
Was your mum offered any medication? My husband responded well to aricept which is not a cure but is supposed to slow the decline. I know it helped him as I did not tell friends my husband was taking it and they noticed he was improved.
The last thing I would say is to get help and support for you. You have already made a good start by contacting TP. It is good to feel you are not facing this alone
Love Tre
a diagnosis of dementia is very frightening both for you and your mum. One thing I would say is that no two people with dementia seem to follow the same track so do not automatically assume every bad symptom will happen to your mum.
At the moment she is managing. Try to get her to accept a little help at this stage even if you have to think up a not quite truthful reason for this so she accepts it. If you can get someone to go in for an hour a week at first, just to help her, then you will have a eye kept on any developing difficulties before they get too bad.
Getting bills on DD is a good idea but do not tell her this is because you think she will get in a muddle but rather say something like " I know you pay by cheque now but I,ve heard that although the government did not get rid of cheques as they said they would this is now back on the agenda" or appeal to her thriftiness as it is usually cheaper to pay by DD.
With regard to POA this is really important. We left this too late with my mum and had to go for Deputyship which was much more expensive rather than POA. Again I would stress to her that this is just futureproofing only to be used if and when needed.
Was your mum offered any medication? My husband responded well to aricept which is not a cure but is supposed to slow the decline. I know it helped him as I did not tell friends my husband was taking it and they noticed he was improved.
The last thing I would say is to get help and support for you. You have already made a good start by contacting TP. It is good to feel you are not facing this alone
Love Tre
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