My brother and I have organised that my mum is cared for at home. We get direct payments from the social sevices and have found some lovely carers. I moved from London a couple of years ago to be near mum, I live locally with my husband and two small kids. At the moment my brother is away working. But what is really bugging me is mum's other family. She has two sisters and a brother and a mum. They live in a different part of the country - so i don't expect them to visit - but they don't ever even phone, write or anything. My Grandma has never been one to call us or visit. I call her when I can to chat. We have always been really close and i feel that i have to accept how she is. It must be breaking her heart that her daughter has this awful illness. And she does want to see mum. But the others - mum's brother and sisters. I don't know whether to confront them about this. They aren't cold people and i think they'll really end up regretting their cowardice which is all i can put it down to. I think mum feels it sometimes and it makes me feel so so sad. That now mum has hardly any one. When my brother is away i'm the only one who sees her. I just think it awful that someone who once had countless people in their life now just has a handful. I suppose this can be what happens but it makes me want to shout and rant...I feel alone and i think mum does too.
feeling a bit abandoned
- Thread starter katherine
- Start date
Hi Katherine,
So sorry you are being made to feel like you do.I have felt this way many a time,but with my own siblings.Demantia and alzheimers is a disease that a lot of people are ignorant of.They run for cover and hope it will be dealt with by someone else.And it usually is as you now know.I think their abscence may be due to the lack of knowing what to expect and the ability to deal with it.Sometimes we (and i am guilty of it) presume they don't want to know!Sometimes it's the fear factor that keeps them away.every family deal with this disease in their own way.It may be that this is the case with your mums family,it may be no help,but it may be an explanation.
take care love elainex
So sorry you are being made to feel like you do.I have felt this way many a time,but with my own siblings.Demantia and alzheimers is a disease that a lot of people are ignorant of.They run for cover and hope it will be dealt with by someone else.And it usually is as you now know.I think their abscence may be due to the lack of knowing what to expect and the ability to deal with it.Sometimes we (and i am guilty of it) presume they don't want to know!Sometimes it's the fear factor that keeps them away.every family deal with this disease in their own way.It may be that this is the case with your mums family,it may be no help,but it may be an explanation.
take care love elainex
Hi Katherine,
Like you I have felt total abandonment from my husband of 17 years family. It is only my 4 children who have a close relationship with their stepdad who has been there for him during the last 5 years. It is so common - the lack of support. Perhaps it is out of ignorance but then one day the guilt for them will set in. It is no consulation I know, it is now you need the support and that is what is here on Talking Point. Although my family are very close, having the friends on T.P. is fantastic and they do not abandon. Wishing you all the very best. Christine
Like you I have felt total abandonment from my husband of 17 years family. It is only my 4 children who have a close relationship with their stepdad who has been there for him during the last 5 years. It is so common - the lack of support. Perhaps it is out of ignorance but then one day the guilt for them will set in. It is no consulation I know, it is now you need the support and that is what is here on Talking Point. Although my family are very close, having the friends on T.P. is fantastic and they do not abandon. Wishing you all the very best. Christine
I am so sorry that your extended family arn't giving you the support you need. I think I'm very lucky, although my husbands sibling and mum live some distaance away they do maintain regular contact and offer support in many other ways. There are times when I feel that I don't understand just how difficult this is for me or how the disease actually affects him. But then I don't think that is possible unless you are the actual carer.
All I can suggest is, that rather than confront them, you talk to them about how much your mum misses their contact and how much you feel that she would appreciate a visit. The softly, softly approach may have more affect than an angry one.
I hope that you and your mum are able to get their support.
Jackie
All I can suggest is, that rather than confront them, you talk to them about how much your mum misses their contact and how much you feel that she would appreciate a visit. The softly, softly approach may have more affect than an angry one.
I hope that you and your mum are able to get their support.
Jackie
I think you should ring them up & tell them that your Mum would love to hear from them. 
Dementia has so many guises & stages they might even realise that she can have a rational chat with them on the phone. Mind you would think they would call you to see how she was doing if that was the case. Also are you absolute sure they never call her? She may just forget.
My Dad has quite rational conversations with his sister,so much so that she wouldn't believe me last January when I phoned & told her I suspected Alzheimer's. She has never called me for a chat to see how he is getting on since I expressed my concerns. When he was finally diagnosed with vascular dementia I didn't actually bother to tell her. My Dad continues to chat on the phone to his sister, she continues to think he is 'fine' & he continues to think she never calls, as he can't remember them.
Dementia has so many guises & stages they might even realise that she can have a rational chat with them on the phone. Mind you would think they would call you to see how she was doing if that was the case. Also are you absolute sure they never call her? She may just forget.
My Dad has quite rational conversations with his sister,so much so that she wouldn't believe me last January when I phoned & told her I suspected Alzheimer's. She has never called me for a chat to see how he is getting on since I expressed my concerns. When he was finally diagnosed with vascular dementia I didn't actually bother to tell her. My Dad continues to chat on the phone to his sister, she continues to think he is 'fine' & he continues to think she never calls, as he can't remember them.
My wife's Mother has s different attitude Katherine.
She refuses to hear anything at all about Jeans Alzheimers and has, in the past, refused to accept that there is anything wrong with Jean.
I suppose it's her way of coping and, thankfully, Jean is beyond understanding what her Mother has done.
Unfortunately, as carers, we have to take on the mantle of protection against this sort of behaviour. I find it hurts me much more than it hurts Jean but still tend to shield her from anything her Mother says or does.
She refuses to hear anything at all about Jeans Alzheimers and has, in the past, refused to accept that there is anything wrong with Jean.
I suppose it's her way of coping and, thankfully, Jean is beyond understanding what her Mother has done.
Unfortunately, as carers, we have to take on the mantle of protection against this sort of behaviour. I find it hurts me much more than it hurts Jean but still tend to shield her from anything her Mother says or does.
Hi,
I thought I was alone on this one but it comforting to hear that others are frustrated by other family members. My biggest frustration is my brother. He was never around much before mum was diagnosed (too busy doing his thing!) and I arrange for him to come to mine last month and then whisked my mum and dad over. I thought him seeing mum and how she is now would give him the all important thump he needed and make him take more interest & help.
Sadly no - haven't see or heard back from him since. So his baby sister rolls on. Other family memebers also seem to busy with their lives too. To be honest, I am fed up trying to make other people see how she is and shock them into becoming involved. I am now more interested in protecting mum and ensuring she has everything she needs. If they are too self-obsessed to be around someone that really needs them then that's going to be their regret in the years to come.
Sorry for the brutal response but I have had it trying to be the mediator within the family. My mum (& dad) know I am there and doing everything I can. Everyone else is big enough & ugly enough to vouch for themselves.
SO - don't be frustrated or angry everyone, just turn it into energy and (if you can) smiles for our loved ones that need us most.
Diane x
PS Excellent thread - helps me put things into perspective
I thought I was alone on this one but it comforting to hear that others are frustrated by other family members. My biggest frustration is my brother. He was never around much before mum was diagnosed (too busy doing his thing!) and I arrange for him to come to mine last month and then whisked my mum and dad over. I thought him seeing mum and how she is now would give him the all important thump he needed and make him take more interest & help.
Sadly no - haven't see or heard back from him since. So his baby sister rolls on. Other family memebers also seem to busy with their lives too. To be honest, I am fed up trying to make other people see how she is and shock them into becoming involved. I am now more interested in protecting mum and ensuring she has everything she needs. If they are too self-obsessed to be around someone that really needs them then that's going to be their regret in the years to come.
Sorry for the brutal response but I have had it trying to be the mediator within the family. My mum (& dad) know I am there and doing everything I can. Everyone else is big enough & ugly enough to vouch for themselves.
SO - don't be frustrated or angry everyone, just turn it into energy and (if you can) smiles for our loved ones that need us most.
Diane x
PS Excellent thread - helps me put things into perspective
Appreciate your problem
Hi there,
Like so many others i can fully understand your problem. I am the youngest of my brother and myself but have been left to deal with mum's alzheimers from start til present day. He did engage for a while but now says and i quote "she doesn't know how often we visit"!!! I know that may be true but at least i can go to sleep at night knowing that i have always and will until the end comes do my very best for our dear mum. She is still a person at the end of the day. Also she has a brother and sister. Her brother hasn't seen her since she became ill and now her sister hasn't visited for over a year. My husband and i and two of her dearest friends are the only regular visitors now and it's so sad. I like you feel so angry at the "so called family" and i know that the day will come when they will see the error of their ways. I know we all deal with things differently but good job i didn't abandon here which effectively i think they have.
You have to say to yourself that you're a better person for everything you do even though it can be really tough sometimes.
JMW
Hi there,
Like so many others i can fully understand your problem. I am the youngest of my brother and myself but have been left to deal with mum's alzheimers from start til present day. He did engage for a while but now says and i quote "she doesn't know how often we visit"!!! I know that may be true but at least i can go to sleep at night knowing that i have always and will until the end comes do my very best for our dear mum. She is still a person at the end of the day. Also she has a brother and sister. Her brother hasn't seen her since she became ill and now her sister hasn't visited for over a year. My husband and i and two of her dearest friends are the only regular visitors now and it's so sad. I like you feel so angry at the "so called family" and i know that the day will come when they will see the error of their ways. I know we all deal with things differently but good job i didn't abandon here which effectively i think they have.
You have to say to yourself that you're a better person for everything you do even though it can be really tough sometimes.
JMW
I wonder what would have happened if everyone here had ditched their responsibilites so easily - do you think the "abandoners" would have eventually dealt with things?
I have no answers, just a wondering.
You know as far as my experience goes in a similar area I don't know that they will feel bad about it - I find that lots of people re write history to suit their own conscience.
I'm not really sure what I'm trying to say here... Sorry.
I have no answers, just a wondering.
You know as far as my experience goes in a similar area I don't know that they will feel bad about it - I find that lots of people re write history to suit their own conscience.
I'm not really sure what I'm trying to say here... Sorry.
Hi all
it makes me wonder those who are left to care feel isolated most of the time and it made worse by fammily members, maybe it is there way on copeing,maybe they dont want to belive what is happening but by doing this they will regret it one day. Would they turn there backs if it was cancer or someother terminal illness i dont thinck so. Yet alzheimers is terminal you do not realize how preciouse a loved one is until there are gone thats if your not involving yourself. I did not think my mum would die of this illness for the 8 years she had it i still visited,still took her for respite and loved her. It makes no sense to me when loved ones say she does not even know ive been to visit, she does not speak, but deep down how do they realy know that. It was not untill my mum was addmitted to hospital after 8 years that it hit me MUM is dying and it killed me inside to watch her die even at the end i was there while she took her last breth. WE are all different in how we cope with things like this but all i can say is be there love them still talk to them because even if they dont respond how do we realy know what goes on in there minds.
take care all kathy
it makes me wonder those who are left to care feel isolated most of the time and it made worse by fammily members, maybe it is there way on copeing,maybe they dont want to belive what is happening but by doing this they will regret it one day. Would they turn there backs if it was cancer or someother terminal illness i dont thinck so. Yet alzheimers is terminal you do not realize how preciouse a loved one is until there are gone thats if your not involving yourself. I did not think my mum would die of this illness for the 8 years she had it i still visited,still took her for respite and loved her. It makes no sense to me when loved ones say she does not even know ive been to visit, she does not speak, but deep down how do they realy know that. It was not untill my mum was addmitted to hospital after 8 years that it hit me MUM is dying and it killed me inside to watch her die even at the end i was there while she took her last breth. WE are all different in how we cope with things like this but all i can say is be there love them still talk to them because even if they dont respond how do we realy know what goes on in there minds.
take care all kathy
thankyou all for your thoughts... i have got in touch with one of my aunts since writing the thread. The one me and my mum are closest to. i wasn't mad - just told her that i thought it sad - and more or less asked for help - i thought it worth one more shot. She called me straight away and is coming to visit soon.... she seemed relieved that i had broken the ice. I feel a lot better about it now - happier - i'll see how i get on with the others but i feel better for acting on my feelings rather than just ignoring them and getting more and more angry... so that's good...
That`s really good news Katherine, you did the right thing.
D`you know, sometimes people want to help but don`t want to intrude. This can be true of families as well as friends. It never does any harm to do as you did, to ask for help without sounding cross or judgemental. Then at least you know you tried, and gave people the opportunity to offer help or deny it to you.
D`you know, sometimes people want to help but don`t want to intrude. This can be true of families as well as friends. It never does any harm to do as you did, to ask for help without sounding cross or judgemental. Then at least you know you tried, and gave people the opportunity to offer help or deny it to you.
Other times they can just be self absorbed...I had my cousin lean over to me at family gathering one day, take my hand and tell me that they felt very sad about what my family had been through, and they just wanted to let me know that they didn't visit because 'I just want to remember Uncle Tommy as he was...before he got this horrible disease'
I just sat there tight-lipped and silent, but inside I was fuming!!!!
Dad's two best friends, men he knew for most of his life, also refuse to visit him...their wives will come but not the men...I know I am supposed to be understanding and care that it must be hard for them, but really I just want to give them a good kick in the pants!!!
I just sat there tight-lipped and silent, but inside I was fuming!!!!
Dad's two best friends, men he knew for most of his life, also refuse to visit him...their wives will come but not the men...I know I am supposed to be understanding and care that it must be hard for them, but really I just want to give them a good kick in the pants!!!
My Jan's family took that line, en masse. It drives me crazy.
yes, I've noticed that it is invariably women who have visited Jan. One notable exception, some friends who are gay have been a good few times, including when I have been on holidays to keep my mind at rest.
Even our very best friends - the wife has visited, the husband not.
I have been surprised by the attitude "remember him as he was"
It has come from pleople that I would not expect. Even the fact that his daughter does not acknowledge her dad any more is excused by thse same people as "it would be too painful for her, poor dear" ARRRGGHH.
Have to say Lionel' s group of old schoolfriends, who he has stayed in touch with this past 50 years, all manage to visit from time to time. Long journeys involved too.
I do find some attitudes hard to take, but maybe I should mellow my reaction somewhat.
They are more to be pitied than anything else, if they have so little compassion.
It has come from pleople that I would not expect. Even the fact that his daughter does not acknowledge her dad any more is excused by thse same people as "it would be too painful for her, poor dear" ARRRGGHH.
Have to say Lionel' s group of old schoolfriends, who he has stayed in touch with this past 50 years, all manage to visit from time to time. Long journeys involved too.
I do find some attitudes hard to take, but maybe I should mellow my reaction somewhat.
They are more to be pitied than anything else, if they have so little compassion.
I always wonder why we DO grit out teeth and fume inside in these situations. I don't know the answer, and I've done it myself. Is it because we don't want to deal with the fall-out, or because we're trained to be polite or what? Perhaps it's because we're afraid that if we speak honestly about the hurt that this attitude causes, we'll go into melt-down and never be able to climb out. Perhaps because it's such an incredibly stupid thing to say that we're rendered speechless. Probably a combination of all these things and a lot more. I think there should be a card or a leaflet or something that we hand out in these situations - something to thrust at people with a "Here. Read this."
I find it a shocking state of affairs - how can you say that about someone - it is still your dad, mum, uncle Tommy etc. Remember them as they were seems to imply that they've died or something. Yes the good times are becoming scarcer but maybe for all that they've become more precious.
My mum having FTD has undergone a complete personality change really to the point that I don't always feel "connected" to her but every now and then she gives me a huge big hug and a kiss and I know that she's trying to respond to me.
But despite anything she's still my mum who brought me up and loved me and kissed my grazed knees and bought me beautiful Christmas presents and helped me with my homework and read to me and tucked me in bed every night.
How could I turn away from her now because she's ill?
I may be very intolerant but it's an attitude that I find impossible to understand.
My mum having FTD has undergone a complete personality change really to the point that I don't always feel "connected" to her but every now and then she gives me a huge big hug and a kiss and I know that she's trying to respond to me.
But despite anything she's still my mum who brought me up and loved me and kissed my grazed knees and bought me beautiful Christmas presents and helped me with my homework and read to me and tucked me in bed every night.
How could I turn away from her now because she's ill?
I may be very intolerant but it's an attitude that I find impossible to understand.
My answer is that I don`t want anyone to help or visit or do anything, if I have to ask or remind them or nudge their conscience. If it doesn`t come spontaneously and from the heart, I can manage without it. So there is no point in discussion.
I told my favourite cousin last Christmas about eric's diagnosis of AD-we've been so close since we were children-I was amazed by her attitude-her response to me was " that's awful.will you get his pension? I won't bother you again-I'll leave it for you to get in touch with me-she is off my christmas card list !!! But I was hurt by her attitude at the time-doesn't matter now!-but still hurts..
Yes, thats what makes me so angry about that comment, its the implication -that they don't value this person who he is today, he no longer exists, that they can't see that he is still a human being who would benefit from the love of others.
I grit my teeth because I find I have so much emotion wound up inside if I dare open my mouth it comes out in a big messy jumble of words and tears and then you can see the other people around you roll their eyes and tut tut with sympathy 'Poor child has had it tough' and I find that my words become meaningless to them, they don't take any of them at face value as they just think I am overwrought and oversensitive.
And also the key thing about such people is that they are extremely good at living in denial so even if I could get my words out sensibly there is very little chance that they would have any effect.
I still recommend a kick up the pants instead
