Nursing homes
- Thread starter Aisling
- Start date
Thank you Celia. I am going to sleep tonight. No alarm clocks on!! Just the usual mobile.
Tonight I feel great.
Aisling xx
I need advice please. My OH was always a private man. Always ready to help anyone and would never talk or gossip about other people. Recently a few invisibles have gone to see him. That is fine but how dare they spread rumours about " how bad he is etc" am so cross and tormented. Unreasonable of course . My heart just hurts for him and for myself. Why would people talk about his private business and add on to the "story"? Why can't they respect his privacy and dignity? He is not a "subject" to be talked about in the local pub etc. I am so so angry. I feel like telling them to stay away but that would only add fuel to the fire. I always had no tolerance of gossip. Of course none of the invisibles communicate with me. SIL is also hurt about this gossip. She thinks I should ban people from visiting but one is a family member actually taking invisibles to visit OH. Mother of trees and bushes, how can people be so awful? Does this happen in other places or just in rural Ireland? Tears falling again.....
Aisling xx
Aisling xx
Not just where you are, my husband has visitors who then tell others how sad it is...I tell myself they think they are being kind...
Some come back to me and say if he was their husband they couldn't bear to leave him there.... That really hurts...
I try to think they just don't understand, and believe they're being kind...But oh dear........
Some come back to me and say if he was their husband they couldn't bear to leave him there.... That really hurts...
I try to think they just don't understand, and believe they're being kind...But oh dear........
I don't think it's just rural Ireland, Aisling, but in cities or suburbs, those who really care or count don't always get wind of the 'gossip' due to population size and thus more anonymity.
Having said thst, when mum went into hospital, I suddenly got a text from a 'friend' asking how things were (hadn't heard from her in an age). I eventually texted back, saying things were just fine. In all of Dublin, this individual gets wind of things like a psychic and is in like a bloody carrion. I will happily meet her and talk to her but I will not give her 'news' or confirm the squawks she wants confirmed by meaningless texts.
I understand your anger. It's disgusting. If it was out of concern (even mixed with ignorance or ssy, guilt), I'd say ok, but one's gut knows when it's mainly just fodder for 'conversation'.
Sending hugs and a virtual baseball bat xx
Having said thst, when mum went into hospital, I suddenly got a text from a 'friend' asking how things were (hadn't heard from her in an age). I eventually texted back, saying things were just fine. In all of Dublin, this individual gets wind of things like a psychic and is in like a bloody carrion. I will happily meet her and talk to her but I will not give her 'news' or confirm the squawks she wants confirmed by meaningless texts.
I understand your anger. It's disgusting. If it was out of concern (even mixed with ignorance or ssy, guilt), I'd say ok, but one's gut knows when it's mainly just fodder for 'conversation'.
Sending hugs and a virtual baseball bat xx
I am not as good a person as you are. In my experience people can be unkind and not able or willing to understand. Easy for people to have opinions... pity they can't keep these opinions to themselves. I stayed away from Church tonight as I simply couldn't come into contact with gossipers.... I would tear them apart. I believe it is ok to feel a just anger. Instead I went to my local lake to watch the swans!! Crying away..... A lone fisherman asked if I was ok. Why are carers battered so much? I don't know..... Pity organisations who claim they offer support don't deliver on this promise. Am thinking of banning visitors except family and close friends. I am protective of OH and his right to privacy. Am going to sleep on this one. Am simply typing as I think and may be making no sense at all, at all!!
Thank you so much for taking the time to contact me.
Aisling xxx
Yes, I've had issues with 'gossip-mongers' as well. Won't bore you with the detail, but I now have the land line permanently on silent and will only respond to people who talk sense to me. Sadly mum, at 90, has few friends left, but those she has have either stopped phoning completely or have wound me up terribly with the nonsense they have spouted on the phone. One in particular I'm sure would go straight out to her friends to gossip about the latest news on mum - she has said some very hurtful things, so I have no qualms about not returning her calls! It seems that some people develop some kind of 'fascination' about serious illnesses (I'm sure it's not just dementia that triggers this odd behaviour). I don't know if it's fear, ignorance or just stupidity on their part.
Having said all that though, for every 'irritant' there has been someone who has been incredibly understanding and supportive to me, so in my mind there's a 'balance'! I have also clearly (but kindly) told some people not to visit us at home. The last thing I need is some idiot coming through the door, upsetting/confusing/scaring my mum, and me being left to deal with the fall out once they've walked out the door. Fortunately, with mum at home, I can control this.
This whole experience has absolutely crystallised to me who my, and my mum's, real friends are. Like an elephant (!), I will never forget!
I always think it so bizarre that I have got more support and sense from people on this forum who I have never met, than people I've known many, many years. People will never cease to amaze me and some of the 'strangers' on this forum have been amazing!
Having said all that though, for every 'irritant' there has been someone who has been incredibly understanding and supportive to me, so in my mind there's a 'balance'! I have also clearly (but kindly) told some people not to visit us at home. The last thing I need is some idiot coming through the door, upsetting/confusing/scaring my mum, and me being left to deal with the fall out once they've walked out the door. Fortunately, with mum at home, I can control this.
This whole experience has absolutely crystallised to me who my, and my mum's, real friends are. Like an elephant (!), I will never forget!
I always think it so bizarre that I have got more support and sense from people on this forum who I have never met, than people I've known many, many years. People will never cease to amaze me and some of the 'strangers' on this forum have been amazing!
People really can be very selfish and insensitive can't they? And yes, I'm sorry to say it happens in other places. Semi rural Wales too! I recently had a visit from a cousin, who came up with my sister (who I don't get on with) and who visited by parents after they'd be in their CH for about a month. I didn't know she was coming and this was the 2nd time she'd visited here in 9 years. We met, she told me exactly what she thought (not favourable), including the fact she'd been to visit a CH near my sister which was much nicer! These people don't understand, but they also don't matter in the grand scheme of things, but unfortunately have the capacity to make us feel bad. Grrr! So sorry, it seems unfair to be subjected to this on top of everything. Lots of people on TP will understand though. And like Marnie63 I have friends and family who do understand or are at least supportive, hope that is true for you too, all the best. Gx
How horrible, no wonder you're so upset. Of course you want to protect his privacy and dignity. I have firmly told the odd relative who hadn't seen my mother for years that, no, they couldn't visit her, since she wouldn't recognise them and she found strangers distressing.
In fact although it was true that she probably wouldn't have recognised them, it almost certainly wasn't true that she'd have been distressed. But I knew how much her former self would have HATED them to see her like that, and I was protecting her privacy.
Good enough reason for me to tell a couple of whoppers. My mother had never been mad keen on them anyway - not that I could say that to their faces.
When my husband went into the CH 14 months ago, a few friends went to see him, they were all upset to see him, saying l could never put my husband in a CH, their husbands are fit and well, if they had AD they may think differently, one friend had a panic attack and almost fainted, saying l could not visit again its too upsetting. I told them it upsets me everyday. We have two true lifelong friends that visit every month, my husband doesn't know who they are now, but they still visit.
There was nothing that made me more murderous, frankly, than people who'd never lived with it and hadn't a clue, saying oh so piously, 'I don't know how you could put him/her in a home - I never could,' and trying to make you feel like the most callous, selfish person in the world.
Not that I'd normally wish dementia on anybody, but I did so often hope that their eyes would be opened by experience.
Thankfully, these people were very few.
These people should try living with it,watching someone you love dearly slip away yet they are still in front of your eyes. Who can't control their body, who are frightened, hallucinating, not know what on earth is going on, not knowing who their loved ones are, watching them deteriorate daily.
Getting angry reading this. Ignorant bar stewards!!!! (sorry)
Hello again Aisling,
I've just caught up on things having not been on here for a while with too much going on ( not that everyone else doesn't have too much going on!). I'm so sorry you are having a rough time. I don't understand how people can be so thoughtless and unkind in their comments towards you, and this from so-called friends. I, and my mum have found nothing but kindness from friends, family and strangers, but most of my friends are nurses. My mum and Dad have always been quite private people but my mum has found such kindness and strength from talking to people, often strangers round her park walking her dog.
I'm not sure if you remember but I was looking for a care home for Dad and was struggling to find one that would take him with 'challenging behaviour'. I've visited some lovely homes and one offered Dad a trial for the day. Ever optimistic I dropped him off at 11am very happy and he was given a named career to spend time with and I was due to pick him up at 4 and I reassured him I would be back. I did not tell dad this was his potential home but just a place to visit for the day and the staff knew that. However, I got a call within an hour saying he wanted to leave, was trying to kick the doors in and threatening to kill people, although he had not physically hurt anyone (thank goodness). He wouldn't take a lorazepam for them and when I arrived he was waiting at the door for me very angry just wanting to go home. He cheered up pretty soon after leaving like a kid who had just thrown his toys out of his pram and remembered nothing of it later.
Mum and I just shrugged our shoulders realising it was going to be harder than we thought!
Since then dad was kicking off almost daily and we were at our wits end as the lorazepam no longer seemed to be working and diazepam just made him less coordinated and do even more bizarre things. I was phoning everyone who would listen to me as the police had been called several times when I was at work so she was not able to get hold of me to help her.
Last week a lovely kind social worker who has been wonderful despite not being dads actual sw got involved and contacted dads consultant and within a matter of hours we had psychiatric nurses round convincing dad he needed to spend some time in hospital for a medication review and to our surprise he let us take him. He was like a gentle lamb and the nurses weren't sure why they were admitting him until I showed them a brief video I took on my phone of him kicking off the day before. I've never done it before because it feels wrong and I hate to see it but this time I'm glad I did.
On admission Dad was lovely and in the same ward he was in last year, and the staff remembered him but the next few days he kicked off big time and even the staff on the unit struggled to cope with him- it was so upsetting to see him so angry and he was angry with me and mum for 'dumping him there'. Sometimes he can be so aware. I know they don't automatically sedate people but it took 4 staff to hold him down and give him an injection for his and everyone else's safety. This was the pattern for a few days- he was so drugged he could hardly walk, lift his head, coordinate or feed himself. Now he is on olanzapine and diazepam and hasn't kicked off for a couple of days but is still very drugged up and keeps going to sit on the floor when there isn't a chair behind him and although strong enough he can't coordinate to get himself up! This is a man I take down the gym 3 x a week and walks over a mile round the park every day and my mum takes to a tea dance weekly( admittedly he can only remember how to waltz now). I hope they don't leave him in this state as the best they can get him as he has no quality of life.
Mum and I visit daily at alternate times but I seem to get the best of dad as he can still be quite hard on her and I can see it's breaking her heart.
The plan is to get dad to a nursing home from here, which will be easier for us to say it's not our decision any more but I actually feel my heart aching for mum and dad. The day dad went in last week we both realised that was his last night at home and it makes me so sad because at 70, and otherwise healthy he still has a lot of living to do.
Dad doesn't always recognise who I am but is always happy to see me ( except for the first few days). Sometimes I can be sitting next to him chatting for hours and suddenly he will look up and see me and say 'oh hello darling, I didn't realise you were there'!
I don't know if it's his condition or the meds but he mumbles a lot, is definitely hallucinating and picking things up off the floor and talking to people who aren't there, which he did a bit before but not all the time. He shuffles like an old man and walks in to things, which is new and struggles to feed himself. Dad has poor perception and cannot read and doesn't look at the tv when it is on, which is not new, so engaging him in physical things and music have been his main enjoyment in life but all he can do at the moment is listen to music( he has an iPod in hospital) but sometimes gets too agitated to listen to it.
Reading everyone's individual stories on here makes me realise we are lucky to be getting help but have a rocky road ahead. Our lives are on hold with dad in hospital and we are visiting as much as we can as he is usually calmer when one of us visit but l certainly can't keep it up indefinitely, and I also need the staff to get a true picture of him when we aren't there. This whole illness is so heartbreaking and I totally take on board that once a loved one goes into a care home you still remain the carer but it's difficult to hand over some of that responsibility.
Sorry to go on on your thread again. You really deserve some lovely friends like those on here nearby. I see so many similarities between your situation and my mums and will continue to follow but will try not to blurt all my own stuff out on your posting again.
Big hugs Aisling xxx
I've just caught up on things having not been on here for a while with too much going on ( not that everyone else doesn't have too much going on!). I'm so sorry you are having a rough time. I don't understand how people can be so thoughtless and unkind in their comments towards you, and this from so-called friends. I, and my mum have found nothing but kindness from friends, family and strangers, but most of my friends are nurses. My mum and Dad have always been quite private people but my mum has found such kindness and strength from talking to people, often strangers round her park walking her dog.
I'm not sure if you remember but I was looking for a care home for Dad and was struggling to find one that would take him with 'challenging behaviour'. I've visited some lovely homes and one offered Dad a trial for the day. Ever optimistic I dropped him off at 11am very happy and he was given a named career to spend time with and I was due to pick him up at 4 and I reassured him I would be back. I did not tell dad this was his potential home but just a place to visit for the day and the staff knew that. However, I got a call within an hour saying he wanted to leave, was trying to kick the doors in and threatening to kill people, although he had not physically hurt anyone (thank goodness). He wouldn't take a lorazepam for them and when I arrived he was waiting at the door for me very angry just wanting to go home. He cheered up pretty soon after leaving like a kid who had just thrown his toys out of his pram and remembered nothing of it later.
Mum and I just shrugged our shoulders realising it was going to be harder than we thought!
Since then dad was kicking off almost daily and we were at our wits end as the lorazepam no longer seemed to be working and diazepam just made him less coordinated and do even more bizarre things. I was phoning everyone who would listen to me as the police had been called several times when I was at work so she was not able to get hold of me to help her.
Last week a lovely kind social worker who has been wonderful despite not being dads actual sw got involved and contacted dads consultant and within a matter of hours we had psychiatric nurses round convincing dad he needed to spend some time in hospital for a medication review and to our surprise he let us take him. He was like a gentle lamb and the nurses weren't sure why they were admitting him until I showed them a brief video I took on my phone of him kicking off the day before. I've never done it before because it feels wrong and I hate to see it but this time I'm glad I did.
On admission Dad was lovely and in the same ward he was in last year, and the staff remembered him but the next few days he kicked off big time and even the staff on the unit struggled to cope with him- it was so upsetting to see him so angry and he was angry with me and mum for 'dumping him there'. Sometimes he can be so aware. I know they don't automatically sedate people but it took 4 staff to hold him down and give him an injection for his and everyone else's safety. This was the pattern for a few days- he was so drugged he could hardly walk, lift his head, coordinate or feed himself. Now he is on olanzapine and diazepam and hasn't kicked off for a couple of days but is still very drugged up and keeps going to sit on the floor when there isn't a chair behind him and although strong enough he can't coordinate to get himself up! This is a man I take down the gym 3 x a week and walks over a mile round the park every day and my mum takes to a tea dance weekly( admittedly he can only remember how to waltz now). I hope they don't leave him in this state as the best they can get him as he has no quality of life.
Mum and I visit daily at alternate times but I seem to get the best of dad as he can still be quite hard on her and I can see it's breaking her heart.
The plan is to get dad to a nursing home from here, which will be easier for us to say it's not our decision any more but I actually feel my heart aching for mum and dad. The day dad went in last week we both realised that was his last night at home and it makes me so sad because at 70, and otherwise healthy he still has a lot of living to do.
Dad doesn't always recognise who I am but is always happy to see me ( except for the first few days). Sometimes I can be sitting next to him chatting for hours and suddenly he will look up and see me and say 'oh hello darling, I didn't realise you were there'!
I don't know if it's his condition or the meds but he mumbles a lot, is definitely hallucinating and picking things up off the floor and talking to people who aren't there, which he did a bit before but not all the time. He shuffles like an old man and walks in to things, which is new and struggles to feed himself. Dad has poor perception and cannot read and doesn't look at the tv when it is on, which is not new, so engaging him in physical things and music have been his main enjoyment in life but all he can do at the moment is listen to music( he has an iPod in hospital) but sometimes gets too agitated to listen to it.
Reading everyone's individual stories on here makes me realise we are lucky to be getting help but have a rocky road ahead. Our lives are on hold with dad in hospital and we are visiting as much as we can as he is usually calmer when one of us visit but l certainly can't keep it up indefinitely, and I also need the staff to get a true picture of him when we aren't there. This whole illness is so heartbreaking and I totally take on board that once a loved one goes into a care home you still remain the carer but it's difficult to hand over some of that responsibility.
Sorry to go on on your thread again. You really deserve some lovely friends like those on here nearby. I see so many similarities between your situation and my mums and will continue to follow but will try not to blurt all my own stuff out on your posting again.
Big hugs Aisling xxx
Yes, I've had issues with 'gossip-mongers' as well. Won't bore you with the detail, but I now have the land line permanently on silent and will only respond to people who talk sense to me. Sadly mum, at 90, has few friends left, but those she has have either stopped phoning completely or have wound me up terribly with the nonsense they have spouted on the phone. One in particular I'm sure would go straight out to her friends to gossip about the latest news on mum - she has said some very hurtful things, so I have no qualms about not returning her calls! It seems that some people develop some kind of 'fascination' about serious illnesses (I'm sure it's not just dementia that triggers this odd behaviour). I don't know if it's fear, ignorance or just stupidity on their part.
Having said all that though, for every 'irritant' there has been someone who has been incredibly understanding and supportive to me, so in my mind there's a 'balance'! I have also clearly (but kindly) told some people not to visit us at home. The last thing I need is some idiot coming through the door, upsetting/confusing/scaring my mum, and me being left to deal with the fall out once they've walked out the door. Fortunately, with mum at home, I can control this.
This whole experience has absolutely crystallised to me who my, and my mum's, real friends are. Like an elephant (!), I will never forget!
I always think it so bizarre that I have got more support and sense from people on this forum who I have never met, than people I've known many, many years. People will never cease to amaze me and some of the 'strangers' on this forum have been amazing!
Thank you Marnie
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