Does anyone have ideas on how to deal with armchair advisors who think they know everything, and of course cause lots of problems, the same advisers think that because i am retired and a full time carer for my wife that i get hundreds of pounds in benefits every month, not the case, i find it hurtful i am a proud person and thats why it hurts. If only people kept thier noses out how much easier life would be ,who agrees or disagrees, answers and ideas all welcome, thanks in advance,lorryman.
i care for person with dementia.
- Thread starter lorryman
- Start date
Hello @lorryman I remember bristling as you do when offered unsolicited advice. There is nothing more annoying.
My sister who lived 300 miles away and who had no contact with my husband and only spoke to me on the phone, kept insisting my husband was bored and needed a `project`.
There was never a more ridiculous suggestion.
Your money is nobody`s business but your own and I`m afraid I would tell any interfering busy bodies to manage their own lives and leave me to manage mine.
My sister who lived 300 miles away and who had no contact with my husband and only spoke to me on the phone, kept insisting my husband was bored and needed a `project`.
There was never a more ridiculous suggestion.
Your money is nobody`s business but your own and I`m afraid I would tell any interfering busy bodies to manage their own lives and leave me to manage mine.
Don’t you just love it when someone says that they can’t see anything wrong with my husband, probably just old age. Followed by ‘It happens to all of us!’. Grrrrrrr!
As I told the woman who lives opposite me, who finds it inappropriate that a young (ish) man would be caring for his mother, when you fund her care then you can have an opinion.
One time when I had to call an ambulance for mum she couldn’t wait to interfere and told one of the paramedics I was a drug addict and an alcoholic. When he asked about it I laughed. You think I could afford the luxury of being a drug addict on carers allowance? ??? All because one night I was enjoying the sunset out front with a glass of whiskey and having a cigarette as a bit of a treat after a hard day with mum. I’d given up smoking years ago when I started looking after mum BECAUSE I CANT AFFORD IT ???
I guess a thick skin and sharp wit are the best defences against people who have no concept of the grind that being a carer is.
One time when I had to call an ambulance for mum she couldn’t wait to interfere and told one of the paramedics I was a drug addict and an alcoholic. When he asked about it I laughed. You think I could afford the luxury of being a drug addict on carers allowance? ??? All because one night I was enjoying the sunset out front with a glass of whiskey and having a cigarette as a bit of a treat after a hard day with mum. I’d given up smoking years ago when I started looking after mum BECAUSE I CANT AFFORD IT ???
I guess a thick skin and sharp wit are the best defences against people who have no concept of the grind that being a carer is.
Thanks for replies, gives me re-assurance, good in a way to know other people have same problems as me, THANKYOU.
The people who make the criticism or comments of "She's not that bad!" or, yes, "It's just old age" make everything that I am dealing with feel worse. All of these people stay away, don't get involved and don't know the reality....and my mother has always been a "proud coverer up" of things she doesn't want't others to see....so that has not helped. If I try to defend myself or express the real situation as I witness it I end up feeling like they must be judging me. It only has got slightly easier in this respect as the dementia has become somewhat worse because it all isn't getting hidden any more...but they are only seeing the tip of the iceberg. The most helpful things for me have been finding this excellent site with so much re-assurance. Also I try to tell every connected health professional the reality as I experience it, to get as much as possible on record. This helps to pave the way for their understanding which ultimately helps me feel more supported.
I have 2 part time jobs to get by, and pay my bills, and that fit around visiting my husband in his home. I hate it when people say that it’s nice to get out out and work a wee bit for something to do? sometimes I bite, and sometimes I don’t.
i was told i was a lady of leisure! really! just because i am not employed, they think i can do what i want all day. that particular person is starting a job as a carer. its going to be a shock
Hi @lorryman. Sorry to hear you're dealing with them. I think it's quite common! It's one of the things I find most challenging about dementia care- managing other people's opinions about the care/and their ideas on what might 'work' to improve the situation. Assumptions and insensitive/ill-timed comments really upset me early on.
I now have a standard message I send out to family/friends when their well- meaning advice/opinions/emotional outbursts become another stress for us to manage. I thank them for their concern (as I do believe ultimately their gestures come from a place of care) and appreciate that they'd like to help or have suggestions. I then, if they don't know, explain a little about the dementia we're dealing with (Fronto-temporal dementia in my mother's case) and how it can present, and what stage of dementia we're dealing with. Then I list what would be helpful and what isn't etc. All sent as a firm, fair message that is honest to the current situation.
I recommend books to people before too. A lack of awareness about dementia, or people not knowing what they can do to help support a disease with no cure- can often drive the armchair advice brigade...
Books with some helpful insights for me have been:
-What I Wish People Knew About Dementia by Wendy Mitchell
-Contented Dementia by Oliver James.
If people are genuinely interested in learning more about the Dementia, they tend to seek out information. And when people know better, they can usually do better!
And if people still insist on sticking their noses into business that's not their own, despite my best efforts with calm and informative comms - they get no response at all. A behaviour shift doesn't always follow but it gets the message across.
I now have a standard message I send out to family/friends when their well- meaning advice/opinions/emotional outbursts become another stress for us to manage. I thank them for their concern (as I do believe ultimately their gestures come from a place of care) and appreciate that they'd like to help or have suggestions. I then, if they don't know, explain a little about the dementia we're dealing with (Fronto-temporal dementia in my mother's case) and how it can present, and what stage of dementia we're dealing with. Then I list what would be helpful and what isn't etc. All sent as a firm, fair message that is honest to the current situation.
I recommend books to people before too. A lack of awareness about dementia, or people not knowing what they can do to help support a disease with no cure- can often drive the armchair advice brigade...
Books with some helpful insights for me have been:
-What I Wish People Knew About Dementia by Wendy Mitchell
-Contented Dementia by Oliver James.
If people are genuinely interested in learning more about the Dementia, they tend to seek out information. And when people know better, they can usually do better!
And if people still insist on sticking their noses into business that's not their own, despite my best efforts with calm and informative comms - they get no response at all. A behaviour shift doesn't always follow but it gets the message across.
I'm so sorry. People can be idiots!
I detest the "its old age" and "it's not that bad" makes me want to scream!!!
Or my neighbour... oh well, she IS 90... omg!!!
And my moronic neice "think positive and we can teach her how to use (insert new technology here).
I won't explain any more when people make comments and this site has helped me enormously. (I had people tell me to sell my house overseas and move back in with Mum to take care of her).
Ignorance is bliss. And now I say "walk a mile in my shoes and then lecture"
I detest the "its old age" and "it's not that bad" makes me want to scream!!!
Or my neighbour... oh well, she IS 90... omg!!!
And my moronic neice "think positive and we can teach her how to use (insert new technology here).
I won't explain any more when people make comments and this site has helped me enormously. (I had people tell me to sell my house overseas and move back in with Mum to take care of her).
Ignorance is bliss. And now I say "walk a mile in my shoes and then lecture"
Thankyou all so much for your advice it really does help, i now know i am not alone which is so helpfull.
I just wanted to say, thank you for making me feel like I’m not alone. I care for my parents, mum has got Alzheimer’s. Dad has had a stroke but he is doing well. I still get told that, when are you going to get a job. You must be so bored with your life. Because I’m on a benefit that I don’t have to look for work. I can get carers allowance for only one person in the household. In total I get an extra £35 a week for looking after both of them. I’m on about 10 pence an hour!! I don’t care about the money. I will do whatever I need to do for them. But, no one knows what it’s like unless you are in the situation. We are doing a good job
Having read some replies I agree with you all. I am regularly told ' with a laugh - I get confused too it comes to us all. No it doesn't.
I am now much quicker to say Thanks I get all the useful help from people in the same boat. So let's change the subject. All best to you Lorryman and all.
I am now much quicker to say Thanks I get all the useful help from people in the same boat. So let's change the subject. All best to you Lorryman and all.
Thank goodness I am not the only one getting the “ helpful “ advice. My husband was able to keep face when meeting people and my friends and family but the dementia is becoming more noticeable to others now.
it’s usually passed off by them saying, ” oh, it’s not him, it’s the dementia, just ignore it. One time I tried to talk to someone when I was having a bad day and they told me that I knew that it would be difficult so should be prepared.
I love my husband and feel that I’m turning into a moaning minnie that everyone will avoid, so I say nothing except, it is what it is. Thankfully I am attending a carers group and they are so supportive.
I know behaviour is caused by dementia and is the reason for the change of the person, but please, I’m still me, not invisible, not without feelings and I don’t know how to be sociable normally anymore.
Sorry for the moaning. I’ve never commented here before .
it’s usually passed off by them saying, ” oh, it’s not him, it’s the dementia, just ignore it. One time I tried to talk to someone when I was having a bad day and they told me that I knew that it would be difficult so should be prepared.
I love my husband and feel that I’m turning into a moaning minnie that everyone will avoid, so I say nothing except, it is what it is. Thankfully I am attending a carers group and they are so supportive.
I know behaviour is caused by dementia and is the reason for the change of the person, but please, I’m still me, not invisible, not without feelings and I don’t know how to be sociable normally anymore.
Sorry for the moaning. I’ve never commented here before .
hello @bowler
a warm welcome to posting on DTP
you're not moaning, simply telling it as it is, and that's what we're all here for, so please feel free to get things off your chest
I hope the person who said you "knew that it would be difficult so should be prepared." never has to face the situation you find yourself in, as their comment shows them to be wholly unprepared ... fortunately for them, you would never be so thoughtless
I'm glad you have the support of the carers group ... and DTP
a warm welcome to posting on DTP
you're not moaning, simply telling it as it is, and that's what we're all here for, so please feel free to get things off your chest
I hope the person who said you "knew that it would be difficult so should be prepared." never has to face the situation you find yourself in, as their comment shows them to be wholly unprepared ... fortunately for them, you would never be so thoughtless
I'm glad you have the support of the carers group ... and DTP
People are mostly meaning to be helpful, so I try to just nod and say nothing, but their lack of insight into the reality can be distressing. and belittling. Ironically, as Muttimuggle has found, they tend to pipe down a bit when the dementia gets worse and is clear for all to see. Ah… perhaps this wasn’t normal ageing after all, and a jigsaw of the Haywain, some post-it note reminders and bit of patience WON’T actually do the trick…
Hi Lorryman, yes, it’s extremely hard. Well meaning, but not in the least helpful.
My dear husband of 37 years has just been dropped of for two weeks into a care home for my respite.
Not only do I feel extremely sad and guilty, it hasn’t been helped by one of our family feeling the need to remind me how lovely he is and do I really need to leave him alone?
Just no idea!
It happens to us all. Keep smiling, there can be good moments. Much love xx
I know what you mean.
I have a neighbour who’s always out cleaning his car who asked me why I don’t take my husband out for his walks any more - years of doing this.
(Because he trips on the pavement? He comes to a sudden stand still and can’t progress? He will not let me hold his arm? He sees someone he thinks he knows and kind of lunges towards them?)
What’s true is that I take him out in the car with our dog most days to a park when I can get him to sit in the car and he ambles around safely with me, stopping and starting, while the dog sniffs.
The worst are my husband’s relatives who all live abroad who occasionally phone when I remind them but insist on asking if he remembers something they did 60 years ago when he can’t remember what he did 1 minute ago. Then they ring me back saying how awful it is and how upset they are.
Stay strong and keep on doing what you can!
