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Dementia.
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Dementia...The longest goodbye ever.
In my profession I deal with people who have dementia. It's a cruel and unforgiving disease. I witness first hand the devastation this causes family members and some struggle to come to terms with how their loved ones act/are.
The person affected remains oblivious and are happy in their own little word but each day their family lose another little piece of their loved ones.
I thought with my training and job, I would be strong enough to deal with dementia but now that it has hit so very close to home, I am really struggling.
To those of you who may be in this situation and are coping, I applaud you x |
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By (user no longer on site)
over a year ago
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It is one the hardest things to deal with as isn't like other terminal disease where you know that 6/12 months later things end. My Nan who I had living with me in the end, went on for nearly 15 years, starting on with forgetfulness then in the end not even knowing how to drink water. It was heartbreaking and the carers who came each day were amazing, how they can invest so much and get little back I do not know. |
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Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well. |
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"Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well. "
Thank you. I thought with all my training and knowledge I would be ok but that has all gone out the window xx |
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By (user no longer on site)
over a year ago
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Dementia is absolutely heartbreaking. You spend every day grieving for a person who may still be here physically, but not mentally. It’s the cruellest of illnesses!
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By (user no longer on site)
over a year ago
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Watched EVERY female in my mothers family slowly succumb to this terrible affliction
Then my mother in law was diagnosed and watched her suffer for a decade before losing the fight
I even watched a friend die as young as 55 with dementia. Non smoker, drinker, bible bashing former Boys Brigade Captain gone at 55
Yes I am 60 and hope it never reaches me |
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By (user no longer on site)
over a year ago
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I deal with dementia in my profession too, on a daily basis, and it's so sad to see the impact it has on families in particular.
I remember during my nursing training, we had speakers come in and talk about Dementia. They were all family members of their loved ones who had, or have dementia of some capacity. I remember they all said something similar, which really upset me and many other students.
She said 'There would be many times where they would come and go like a light switch in their cognition and memory. Sometimes I wish their light would remain off, and forget me altogether, so it wouldn't give me hope that they are still there, and also it wouldn't frustrate them when they would forget me again and get frustrated when they tried to remember.' |
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By (user no longer on site)
over a year ago
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"
I have no advice. Just take it day by day and make sure you look after yourself as well. "
This is so important. Your loved one seems to be almost safe in their new world. On the other hand you’re being torn apart. If you can, get someone else to sit with them for an hour whilst you have some me time.
My mother was severely demented She was one of eleven siblings and all bar one got dementia. I’m terrified! |
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By (user no longer on site)
over a year ago
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"Dementia is absolutely heartbreaking. You spend every day grieving for a person who may still be here physically, but not mentally. It’s the cruellest of illnesses!
"
Exactly this 
Watching my father go through it was by far the most challenging time of my life, and seeing him become less and less of the person I love was the most upsetting.
My heart goes out to anyone going through the illness, but even more for their family and loved ones.
My feelings were totally torn when he died because he was gone from my life, but at the same time I was so relieved because the frustration he was experiencing right through it was horrible for him.
Big hugs to everyone who posts here for caring enough to take the time to show you care 
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My dad had it they said he’ll last 18 months tops - he lasted 11 years - I saw the strong guy, entrepreneur, fade slowly away with less and less lucid moments and eventually he withdrew completely - no recognition of people or his surroundings- the latter maybe a blessing - then just day by day fade away - made me an advocate for assisted euthanasia - to go with dignity on your terms. A protracted awful experience. |
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I don’t work in the caring profession but I guess a part of the training is to de-personalise it? You can deal with it professionally because it’s not happening to someone close to you.
When that changes, I can’t imagine how tough it must be. My heart goes out to you x |
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"What would you tell others? Your feeling it because its personal ... you will come to terms with it ... but for now you are grieving for the person you lost / are losing."
I thought if I kept my professional head on then I could rationalise it better but it has utterly destroyed me x |
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"What would you tell others? Your feeling it because its personal ... you will come to terms with it ... but for now you are grieving for the person you lost / are losing.
I thought if I kept my professional head on then I could rationalise it better but it has utterly destroyed me x"
Me too. I only read your post and I’m in tears again. It’s awful. |
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By (user no longer on site)
over a year ago
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"What would you tell others? Your feeling it because its personal ... you will come to terms with it ... but for now you are grieving for the person you lost / are losing.
I thought if I kept my professional head on then I could rationalise it better but it has utterly destroyed me x"
It’s good you’ve recognised and admitted this to yourself. You can now try to do something to mend it a bit. Ask others for help |
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"What would you tell others? Your feeling it because its personal ... you will come to terms with it ... but for now you are grieving for the person you lost / are losing.
I thought if I kept my professional head on then I could rationalise it better but it has utterly destroyed me x
Me too. I only read your post and I’m in tears again. It’s awful. "
I'm so sorry to hear you are going through it too x
I haven’t stopped crying since I heard the news when I'm alone xx |
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"What would you tell others? Your feeling it because its personal ... you will come to terms with it ... but for now you are grieving for the person you lost / are losing.
I thought if I kept my professional head on then I could rationalise it better but it has utterly destroyed me x
Me too. I only read your post and I’m in tears again. It’s awful.
I'm so sorry to hear you are going through it too x
I haven’t stopped crying since I heard the news when I'm alone xx"
I knew it was coming but it didn’t make it any easier. If it’s family or someone close you also need a hell of a lot of patience. |
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"Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well.
Thank you. I thought with all my training and knowledge I would be ok but that has all gone out the window xx"
It’s unbelievably hard but I imagine it’s natural to not be professional about it.
I moved back to look after dad a couple of years ago and we’re still in the early stages. Hoping we can hold off the worst for a while longer.
Some days though the only thing that helps is a mega cry.
Lots of love to everyone affected x |
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By (user no longer on site)
over a year ago
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6 years ago today we said goodbye to my
Lovely nanny who had Alzheimer’s and vascular dementia for 11 long years she fought but we lost her long before it before it took her and stripped her of all her dignity and being. She passed peacefully a week before her 90th birthday, I was a dementia link nurse in my previous role. I have a tattoo of forger me nots for this exact reason. It’s a cause very close to my heart.
RIP Nanny.
So sorry for anyone experiencing this with their family or friends. It’s the cruelest for the family. |
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My Dad has vascular dementia plus possibly Alzheimer's. He's 82. He's starting to get to the point where he can't cope with certain things on his own, like managing his finances. I have absolutely no idea how we'll cope if he gets to the point of needing more care. My brother isn't a great deal of help, unfortunately. Dad has really started regressing and living in the past. He talks about his parents a lot and about his Grandad (who died in 1946). |
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By (user no longer on site)
over a year ago
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"Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well.
Thank you. I thought with all my training and knowledge I would be ok but that has all gone out the window xx"
Look after yourself, too. Form experience, it isn’t possible to do it at work and at home. Something has to give x |
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By (user no longer on site)
over a year ago
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Its a truly awful disease, my mum suffered with it watched her get slowly worse for about 4yrs,she couldn't remember what she had said or done 10mins previous, rang my wife 3 or 4 times an hour everyday asking the same bloody question drove my wife and me to despair but what do you do they cant help it.
Sadly about 4yrs ago she was taken by pancreatic cancer, took her to A&E one day as had breathing problems while there they found the cancer it had gone into her liver and stomach also,they gave her 8wks ,she lasted 7. Ironically the dementia meant she didnt know where she was or that she was ill,she passed away 3mins past midnight just made it into mothers day she was 87. |
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"Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well.
Thank you. I thought with all my training and knowledge I would be ok but that has all gone out the window xx
Look after yourself, too. Form experience, it isn’t possible to do it at work and at home. Something has to give x"
Good advice. It's very important to look after yourself. Often people who aren't directly involved or who only see the person infrequently have no idea of the reality of the situationbor choose to turn a blind eye. They laugh things off or trivialise concerns. |
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"Its a truly awful disease, my mum suffered with it watched her get slowly worse for about 4yrs,she couldn't remember what she had said or done 10mins previous, rang my wife 3 or 4 times an hour everyday asking the same bloody question drove my wife and me to despair but what do you do they cant help it.
Sadly about 4yrs ago she was taken by pancreatic cancer, took her to A&E one day as had breathing problems while there they found the cancer it had gone into her liver and stomach also,they gave her 8wks ,she lasted 7. Ironically the dementia meant she didnt know where she was or that she was ill,she passed away 3mins past midnight just made it into mothers day she was 87. "
Very sad. I'm sorry |
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By (user no longer on site)
over a year ago
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"Its a truly awful disease, my mum suffered with it watched her get slowly worse for about 4yrs,she couldn't remember what she had said or done 10mins previous, rang my wife 3 or 4 times an hour everyday asking the same bloody question drove my wife and me to despair but what do you do they cant help it.
Sadly about 4yrs ago she was taken by pancreatic cancer, took her to A&E one day as had breathing problems while there they found the cancer it had gone into her liver and stomach also,they gave her 8wks ,she lasted 7. Ironically the dementia meant she didnt know where she was or that she was ill,she passed away 3mins past midnight just made it into mothers day she was 87.
Very sad. I'm sorry"
Thanks i still miss her now, but glad she isn't suffering anymore. |
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By (user no longer on site)
over a year ago
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"I lost my dad to it this week, but the person who was.my dad, I lost about 5 years ago"
Sorry to hear that,and thats another twist you loose the person twice, so so sad. |
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By (user no longer on site)
over a year ago
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Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear. |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear."
My Dad gets very angry. I think it's because he knows (to some extent at least) that he's either not making sense or can't convey what he wants to get across. For him, language is becoming impacted quite quickly. |
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"Its a truly awful disease, my mum suffered with it watched her get slowly worse for about 4yrs,she couldn't remember what she had said or done 10mins previous, rang my wife 3 or 4 times an hour everyday asking the same bloody question drove my wife and me to despair but what do you do they cant help it.
Sadly about 4yrs ago she was taken by pancreatic cancer, took her to A&E one day as had breathing problems while there they found the cancer it had gone into her liver and stomach also,they gave her 8wks ,she lasted 7. Ironically the dementia meant she didnt know where she was or that she was ill,she passed away 3mins past midnight just made it into mothers day she was 87.
Very sad. I'm sorry
Thanks i still miss her now, but glad she isn't suffering anymore."
It's a double edged sword isn't it. You would never wish a aren't dead but neither would you wish this drawn out awfulness on them. I wish there was a safe space for the relatives and carers of the very elderly to say exactly how they feel without judgement. |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear."
My mum has become very compliant which is most unlike her. Also when I was washing her hands the other day she said "you've always had lovely small hands" which is most unlike her. She has very poor short term memory and can literally forget conversations as soon as they're finished. My father on the other hand has become extremely unreasonable, highly anxious and obsessed with money to the point he sits watching the electric fire counting the minutes until the thermostat clicks it on. That's one reason we've told him not to get a smart meter |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear.
My Dad gets very angry. I think it's because he knows (to some extent at least) that he's either not making sense or can't convey what he wants to get across. For him, language is becoming impacted quite quickly. "
Was he an angry man before? I've noticed that certain characteristics my parents had have become magnified. |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear.
My Dad gets very angry. I think it's because he knows (to some extent at least) that he's either not making sense or can't convey what he wants to get across. For him, language is becoming impacted quite quickly.
Was he an angry man before? I've noticed that certain characteristics my parents had have become magnified."
He's always been short tempered but not angry, per se. His short temper is now even shorter and the frustration he obviously feels just spills out. His lack of a filter has certainly been magnified. He was always pretty free with verbalising his thoughts but now the filter is very much off  |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear.
My Dad gets very angry. I think it's because he knows (to some extent at least) that he's either not making sense or can't convey what he wants to get across. For him, language is becoming impacted quite quickly.
Was he an angry man before? I've noticed that certain characteristics my parents had have become magnified.
He's always been short tempered but not angry, per se. His short temper is now even shorter and the frustration he obviously feels just spills out. His lack of a filter has certainly been magnified. He was always pretty free with verbalising his thoughts but now the filter is very much off "
Ah yes the filter off facility |
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The slightly weird thing about me and my Dad is that I have absolutely no first hand knowledge of him as anything other than a middle aged man or older. He was 47 when I was born, and let's say I have memories from being 5yrs old, so my Dad was already 52. He's now 82. I'm in the same position care wise as my work colleagues who are in their 50s and 60s who have much older/adult children, whereas I'm having to do this with a 4yo who needs me to be at home. I feel incredibly split. I can't be in two places at once. |
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My dad had dimentia...died a husk of the man I knew...one of the problems I had to deal with is when to say goodbye... there's no good time as he grew less coherent and who I called dad had left months before he died |
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"Yep, dealing with this too. Early stages and she's ok in the moment, except she has the memory of a goldfish. Struggling with timelines, confusing the past with the here and now. Good thing is she doesn't get scared or aggressive and she still recognises me, and can cope at home, with a daily help. If she loses recognition or fails to cope, that will be significant. I think when you get to the point that you don't recognise the person inside anymore, it becomes incredibly difficult to bear.
My Dad gets very angry. I think it's because he knows (to some extent at least) that he's either not making sense or can't convey what he wants to get across. For him, language is becoming impacted quite quickly.
Was he an angry man before? I've noticed that certain characteristics my parents had have become magnified.
He's always been short tempered but not angry, per se. His short temper is now even shorter and the frustration he obviously feels just spills out. His lack of a filter has certainly been magnified. He was always pretty free with verbalising his thoughts but now the filter is very much off "
My granny started swearing which initially was really shocking but we quickly became used to it. She became really frustrated and difficult too which was completely at odds with how she was prior to the onset of it all.
My cousin moved in with her for a while but it was very hard. When she went into care she broke her hip and was operated on bud she would forget she couldn’t get up and would try to get out of bed all the time. She ended up re-breaking it and was off her feet then. She didn’t last long after that
For my dad and his brothers and sister it was very hard to see her change, then go downhill as rapidly as she did. In the end when she passed it was a relief for all, as she was unrecognisable in the end. It literally peeled every strip of pride and dignity she had and that was the hardest part.
My parents are getting older now and it’s a constant worry. My elder brother is in the US and my younger one, I don’t think he’d cope too well. I try not to dwell on it. |
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"We keep finding my Dad watching porn quite openly on his laptop
"
I'm well aware my Dad watches porn. He most probably had (has?) a profile on here at some point. I'm pretty sure he used to go to Townhouse too. I don't think he does any more. |
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"The slightly weird thing about me and my Dad is that I have absolutely no first hand knowledge of him as anything other than a middle aged man or older. He was 47 when I was born, and let's say I have memories from being 5yrs old, so my Dad was already 52. He's now 82. I'm in the same position care wise as my work colleagues who are in their 50s and 60s who have much older/adult children, whereas I'm having to do this with a 4yo who needs me to be at home. I feel incredibly split. I can't be in two places at once. "
No, you can't. Sorry but I don't have an answer. |
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By *icketysplitsWoman
over a year ago
Way over Yonder, that's where I'm bound |
OP, I'm sorry you're going through this on a personal level. It is a cruel disease.
Professionally you help people like me, like us, by caring for our affected loved ones. It's OK to not be your professional self - you need to someone to help you now. How can you detach from someone you love without it affecting you?
What you have is some preparation for the stages, excellent knowledge for communicating with the professionals (and not getting fobbed off), and knowledge about best care standards and management. Getting the right meds at the right time make a difference to someone's wellbeing.
Caring for my mother helped me into a breakdown. Getting her a place in a care home saved our family. I am grateful for the genuinely warm care she received, particularly in her last days when everyone going off shift came into her room to check on her and say goodbye. Then, five carers came to her funeral on their day off.
to all of you going through the challenge of caring for someone with dementia.
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I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R |
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My dad ad it and it broke my heart 2 watch him not know wot he's ad 4 his breakfast but could still tell u wot happened wen he was a kid
.gratefull he know who we all were b4 he died ..then my mom showed signs of it wen she was in care home she would ask were is ur dad ..I'd say he's at home mom with tears in my eyes ... sending hugs 2 all x
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Lost my Mum to dementia after I had only just got back in contact with her.
I thought there was something wrong as I flew out to see her one weekend and she stood me up. I took it the wrong way and only now I realise it was probably her illness.
Saw her lots before the end but it was very cruel to her. |
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R"
It doesn't surprise me that lots of care home residents don't get visits or phone calls. The beautiful people with amazing stories that you see might have been quite different with their family.
It would take a lot for me to stop contact with my parents in fact I doubt I ever would but I have had to step back emotionally for my own mental health. My brothers rarely contact them or see them |
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"Lost my Mum to dementia after I had only just got back in contact with her.
I thought there was something wrong as I flew out to see her one weekend and she stood me up. I took it the wrong way and only now I realise it was probably her illness.
Saw her lots before the end but it was very cruel to her. "
Looking back there are lots of small signs that it's easy to misinterpret. Glad you saw her a lot before the end |
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R"
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge. |
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge. "
My mum will tell people that her son's never phone her but when one of my brothers who lives in the far East said he was going to call and asked the best time she said she didn't want to speak to him as it would upset her.
I said countless times that I would clean their house for them, she refused every time. Eventually I managed to get her to agree to a cleaner. The lady I employed on her behalf knocked on my door after her first shift to tell me that my mum had broken down in tears when she finished because "nobody had cleaned for such a long time"  . Obviously this woman got the impression that I was happy to just let them live in the dust.
I could give many more examples of this kind of behaviour. |
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By (user no longer on site)
over a year ago
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge. "
Some relatives just can't deal with it and find it easier to cut contact. Sad, but everyone has their own way of dealing with things and like you say it isn't for us to judge |
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By *nfin8yWoman
over a year ago
Newcastle-under-Lyme |
to all who are going through this. Like
many others who have posted I've nursed and supported individuals with dementia and their families. My mum had Alzheimer’s dementia and at times I felt at my wits end and powerless. Fortunately my brother and I had each other to lean on for support and then later the fantastic team of truly caring people in the care home. |
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Not quite the same but last year I ended up in hospital with an infection (sepsis) so I had just a small taste of what it must be like to suffer with dementia. I didn't know where I was, or what I was doing there. Luckily, it only lasted for about 5 days. The nurses were angels. |
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By (user no longer on site)
over a year ago
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge. "
I saw both both my parents go this way, within 10 days of each other and now I have another relative, I help with, going the same way. I will not let my kids see me like this. I don't want that to be their last memory of me. |
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By (user no longer on site)
over a year ago
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I lost my grandfather in August. He had dementia. He was only 70, was a heart attack but I genuinely think his heart was broken. He started having these quirks and would talk but never listen. Would count everything, would tell you what time the street lights would come on. Would call people by different names. Would clap for seagulls and birds or if he saw kids he would wave at them. He would walk everywhere and catch buses and get lost. It was getting a bit out of control and as a family was thinking about a home but he was fully functioning really, didn’t want carers. Wouldn’t listen to anyone. He was walking into peoples houses and banging on their windows and cos he looked ‘normal’ he was getting himself in trouble. We would take him out between us all every day someone was taking him out but he’d wait till he got home and go straight back out. He wouldn’t let one of us go and live with him. I was getting pain in the arse which is the most disgusting thing to say cos I lived with him since I was a teenager. The guilt I feel is unreal. I hope he couldn’t feel that he was getting a menace. It wasn’t even him it was the illness. Some stupid bitch filmed him and put it on Facebook cos he was down the beach and was clapping and waving at the seagulls and the kids and this girl filmed him on her phone saying look at this peedo and saying really nasty things. I found out who she was and went to her house and I was gonna batter her if she didn’t delete the video but she did. I feel like his heart knew that the world was too cruel so it just gave up. |
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By *3xymamaWoman
over a year ago
Uptown Top Ranking |
Sending love to all who are dealing with dementia. Whether it be in a personal or professional level.
This is one of the reasons I love fab and stay on here. It's the care and support offered by the fab community.
Take care everyone and know you're great people  |
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I have vascular dementia , tbh im not aware of many problems until someone points out to me the things i have forgotten......they all seem to be recent and not long term memories that have gone .
How long until im a problem ? I dont know |
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To anyone dealing with it at the moment, my heart goes out to you. To those that care for them in holes and hospitals, thank you all so much from the bottom of my heart.
I went though the process with my father and early onset dementia. What happened next and the path that was followed I wouldn’t wish on my worst enemies. From home care to care homes, committed then in specialist hospitals. Seeing the man you most admire turn into a shell of himself then into nothing at all.
Care homes are awful places, but then your eyes are well and truly opened when you go to a psychiatric hospital then a specialist dementia hospital. Knowing the only path things will go and that apart from the dementia he was fit and healthy.
I’m scared shitless that the same thing may happen to me in the future and it’s changed the way I live my life. I live far more for the now than I did previously planning for the future.
Enjoy what you have as you don’t know when it’ll all be gone.
I don’t think I’ve ever spoken publicly about this either! But if anyone wishes to chat, just say hi
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"To anyone dealing with it at the moment, my heart goes out to you. To those that care for them in holes and hospitals, thank you all so much from the bottom of my heart.
"
First para was meant to be “care for them in homes and hospitals”
Ooops! |
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Sorry to hear your views on care homes but just want to point out that not all care homes are bad. We love and care for our residents as if they were family and do everything we can to make their everyday life as comfortable and enjoyable in everyway possible. |
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By (user no longer on site)
over a year ago
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"Sorry to hear your views on care homes but just want to point out that not all care homes are bad. We love and care for our residents as if they were family and do everything we can to make their everyday life as comfortable and enjoyable in everyway possible."
No doubt there are some dumps who treat residents like shit but there are many excellent care homes with excellent staff who see residents as part of their own family even whilst getting paid shit money. Don't tar all with the same shitty brush |
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge.
My mum will tell people that her son's never phone her but when one of my brothers who lives in the far East said he was going to call and asked the best time she said she didn't want to speak to him as it would upset her.
I said countless times that I would clean their house for them, she refused every time. Eventually I managed to get her to agree to a cleaner. The lady I employed on her behalf knocked on my door after her first shift to tell me that my mum had broken down in tears when she finished because "nobody had cleaned for such a long time" . Obviously this woman got the impression that I was happy to just let them live in the dust.
I could give many more examples of this kind of behaviour. "
My Dad rang me on Tuesday and told me he'd not seen me or my daughter for months and months. We'd visited exactly one week prior and taken him for a day out, but obviously he does not recall any of it. I'm sure he tells people outside the family all sorts. He cobbles together bits of information his brain can retrieve and invents things that have never happened but sound plausible to people who don't know him.
I would like it for people not to judge. |
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R
I work in this field too but never judge. I have held many peoples hand as they died because family members chose not to be there at the end. I have also witnessed many with no visitors but again I never judge.
My mum will tell people that her son's never phone her but when one of my brothers who lives in the far East said he was going to call and asked the best time she said she didn't want to speak to him as it would upset her.
I said countless times that I would clean their house for them, she refused every time. Eventually I managed to get her to agree to a cleaner. The lady I employed on her behalf knocked on my door after her first shift to tell me that my mum had broken down in tears when she finished because "nobody had cleaned for such a long time" . Obviously this woman got the impression that I was happy to just let them live in the dust.
I could give many more examples of this kind of behaviour.
My Dad rang me on Tuesday and told me he'd not seen me or my daughter for months and months. We'd visited exactly one week prior and taken him for a day out, but obviously he does not recall any of it. I'm sure he tells people outside the family all sorts. He cobbles together bits of information his brain can retrieve and invents things that have never happened but sound plausible to people who don't know him.
I would like it for people not to judge. "
The thing is that until you've lived it you can't really understand. I know people think I'm exaggerating. |
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"Sorry to hear your views on care homes but just want to point out that not all care homes are bad. We love and care for our residents as if they were family and do everything we can to make their everyday life as comfortable and enjoyable in everyway possible."
I hope it wasn’t me you’re replying too. I hope it didn’t read badly. The care that was given was outstanding at every point in the system. It was seeing both my father and others suffering from their illnesses and how he would progress that I hated to see and wouldn’t wish on anyone. I hope that makes sense.
The staff were always fantastic, it’s a job I really couldn’t do and I appreciated and admired them all so much. One nurse in the royal Edinburgh would sing to my father and that would calm him down when nothing else would. I will never forget all the help he received and how I and my family appreciated it. |
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My mother has vascular dementia caused by damage to the brain following a stroke.
Up until then she was in her 70's and going to the gym 5 days a week.
Now somedays she is a sharp as a tack and will have the most lucid conversations with you. Others I have to try and translate what she is saying as she will use random words.
She finds it frustrating and gets angry or cries like a baby.
Last week following a stroke, whilst we were in Newcastle, she sat in the hospital begging me to take her home, tears pouring down her face. You would have thought it was a child who had just been told they were not getting anything on their Christmas list.
That upset me more than being scared by another stroke.
On Monday following up with the GP I was asked about a DNR for her.
Whilst I know she will never get better, whilst it was in my head I guess I could pretend it isn't the beginning of the end.
Anybody going through this you have my admiration and love. It is tough. Becoming a parent to your own parent is bloody tough. And a little bit of my heart breaks every day. |
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"My mother has vascular dementia caused by damage to the brain following a stroke.
Up until then she was in her 70's and going to the gym 5 days a week.
Now somedays she is a sharp as a tack and will have the most lucid conversations with you. Others I have to try and translate what she is saying as she will use random words.
She finds it frustrating and gets angry or cries like a baby.
Last week following a stroke, whilst we were in Newcastle, she sat in the hospital begging me to take her home, tears pouring down her face. You would have thought it was a child who had just been told they were not getting anything on their Christmas list.
That upset me more than being scared by another stroke.
On Monday following up with the GP I was asked about a DNR for her.
Whilst I know she will never get better, whilst it was in my head I guess I could pretend it isn't the beginning of the end.
Anybody going through this you have my admiration and love. It is tough. Becoming a parent to your own parent is bloody tough. And a little bit of my heart breaks every day. "
Sorry you're experiencing this.
I'm telling you this because I find it helps to realise you're not alone in this not to make it into a competition. My mum has had a brain injury and several strokes. She often calls me from the hospital crying and asking if she's dying of it they've told me she is, in the days when visiting patients was possible she would cry and say she just wanted to go home and she couldn't because none of us wanted her to. I don't know if it's any help to you but I find that she calms down if I'm very matter of fact with her father than overtly sympathetic.
As you can see there are a few of us in this unenviable position. You're not on your own  |
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By (user no longer on site)
over a year ago
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A man goes for his annual checkup. Afterwords he’s sitting the the doctor’s office and the doctor comes in with the results of his tests. The doctor says, “I have some bad news; you have cancer and Alzheimer’s.” The man replies, “well, at least I don’t have cancer.” |
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"A man goes for his annual checkup. Afterwords he’s sitting the the doctor’s office and the doctor comes in with the results of his tests. The doctor says, “I have some bad news; you have cancer and Alzheimer’s.” The man replies, “well, at least I don’t have cancer.”"
I know they say that laughter is thr best medicine but seriously not on this occasion. |
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By (user no longer on site)
over a year ago
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"How are you feeling about it all today Sparkle?
I've been working a 12 hour shift. I'm scared to stop incase my mind takes over x"
If you ever fancy a chat and a drink, I think we’re local! Dementia is bloody hard, don’t feel you need to suffer in silence x |
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"How are you feeling about it all today Sparkle?
I've been working a 12 hour shift. I'm scared to stop incase my mind takes over x
Oh .
Would it help to get it out on here? "
^^^This. I've found it cathartic to find others who have similar experiences...... |
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"How are you feeling about it all today Sparkle?
I've been working a 12 hour shift. I'm scared to stop incase my mind takes over x
Oh .
Would it help to get it out on here?
^^^This. I've found it cathartic to find others who have similar experiences......"
Same. I think it's because most people either don't understand or simply think you're over reacting |
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By (user no longer on site)
over a year ago
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When My Mum died I had to break the news to my Dad, although they were actually only a few rooms apart in the care home. Trouble was he kept forgetting she'd died, and he'd either say something or make to go and see her. I had to tell him each time, and it was always like he was hearing it for the first time. That was hard. |
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"Sorry to hear your views on care homes but just want to point out that not all care homes are bad. We love and care for our residents as if they were family and do everything we can to make their everyday life as comfortable and enjoyable in everyway possible.
I hope it wasn’t me you’re replying too. I hope it didn’t read badly. The care that was given was outstanding at every point in the system. It was seeing both my father and others suffering from their illnesses and how he would progress that I hated to see and wouldn’t wish on anyone. I hope that makes sense.
The staff were always fantastic, it’s a job I really couldn’t do and I appreciated and admired them all so much. One nurse in the royal Edinburgh would sing to my father and that would calm him down when nothing else would. I will never forget all the help he received and how I and my family appreciated it. "
I apologise as obviously read your post in the wrong way. Thank you for making it clearer. |
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My job as a live in carer means I spend 2 weeks at a time with my amazing clients one on one.
I would not do any other job, I have met the most amazing people that you could imagine.
Admittedly not all my clients are last stage dementia which means I get to learn a lot about their early years.
Although these memories may be jumbled in time, sit and listen and never correct or ask direct questions as it means they have to search their memories for answers which they can not always do depending on the time they have had dementia.
Dementia is a cruel desiese and you are correct, a lot of my clients are happy in their own little "time space".
Let them tell you if they are able about their lives as their memories will go very far back, it is new memories that they lose the capacity to make, however, someone with dementia will greatly remember feelings so if they are able then dance with them, play music, read poetry.
It is awful when I see how they do not remember their family members as the memories they poses of their children are of when they were small children, hence why they do not recognise them in the here and now.
Big hugs to any members here today who has a family member with dementia or alzheimer's.
Kitten xxx |
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By (user no longer on site)
over a year ago
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I hate it when people suffer. Prayers go out to all in the hope a miracle cure will be found so that they suffer no more and bring back fond memory's. Love to all... |
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By *innWoman
over a year ago
Cheshire |
"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R"
You're a professional , it's your job and you aren't so emotionally attached .I can suggest some reasons why maybe they don't ring or visit which I can empathise with .It is heartbreaking to see your relative with the disease .Most of the time they might not even know you when you visit .I visited my mother several times a week even though it was daunting and I did feel very sorry for those who didn't have visitors at all .I made sure my mother had decent clothes, some had no one to bring them new clothes or treats . By the time they get into care with dementia it often advanced and the relatives might have had many years of stress caring for their relatives unpaid .So if relatives choose to bury their heads in the sand it might be avoidance of a very distressing and draining situation .It is a shame that a lot of patients don't get visitors of course . One Christmas I stayed the whole day and only a few other relatives arrived. Sometimes when leaving her my mother became distressed and didn't want me to go , othertimes she didn't know me .Most of the time the residents thought I was visiting them as well...such is the nature of the illness .We've no idea what is going on in their heads .
In moments of lucidity my mother was distressed and realised she had dementia and wanted me to take her home .That was really hard .I forced myself to visit as it was my duty and I cared , but I think I'd rather have been on the staff and not traumatised by witnessing my own mother descend into a living hell . |
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By (user no longer on site)
over a year ago
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"I work in this field. It amazes me the amount of residents who don't get visits or phone calls from their families. It's absolutely heart breaking. A 5 minute phone call just makes their day. We spend 12 hours a day with these beautiful people with amazing stories to tell. Even the ones that can't tell you anymore or talk. Just hearing your voice can make the world of difference. If you have a family member in a care home just phone them
R"
I rarely phoned or visited my mum when she was in a care home, in fact i didn't phone her at home in her later years because of various reasons
1 .. she struggled to understand how to listen and speak on a phone
2 .. it often upset her to hear or see me, she always said I'd put her in a home so i could take her money. She didn't say that to any of my siblings.
3 .. when visiting her she would frequently get very angry with me or upset and often tried to leave with me.
Hence phoning and visiting her wasn't a good thing and didn't help her at all.
I have worked in a care home too and many residents were the same as my mum.
Once mum got to the stage that she had no idea who i was then i did visit again. Sadly she spent a lot of her time upset anyway, they eventually got her medication sorted so that she was no longer upset. Although it was very difficult to get her to take medication anyway. |
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By *opilotMan
over a year ago
Heathrow |
My heart goes out to you Sparkle and everyone else whose loved one has this cruel disease. I lost my Dad 3 years ago, but we lost the man before that. It is so hard on everyone watching them fade each day, having the same conversation over and over again, but for them it is the first time. I learnt to just respond as if it was the first time I was hearing the story. Try not to correct them on facts, there is no need to, if they think its Saturday then its Saturday. It will only frustrate them. I hate to say this but in the end it was a blessing when he passed. |
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I hear you & feel for you. I work as an OT in mental health & have & do work with adults (from age 30 up) with Dementia (not exclusively. I find there can be positives, but impact on family & carers is very much underestimated. I always try & go the extra mile. Having a family member go through it is heartbreaking. Sending hugs ??  |
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By *essie.Woman
over a year ago
Serendipity |
I helped care for my maternal grandmother who got far worse when we lost her only child, my Mum. One of my siblings and I cared for her at home for 3 years, but eventually she had to go into a care home, as she had gone into hospital. I learnt to go along with what she said, like she thought she was 100 not 89 and we did have some good times, even in the care home. In a way, I was relieved when she passed, as she was no longer the grandmother I remembered. Still miss her. It’s a dreadful disease, my thoughts with anyone living with it or with family members who have it now. |
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By (user no longer on site)
over a year ago
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Sparkle thank you so much for this post which has become one of the most heart warming ever on here. This tends to be a fantasy site with peoples dreams to the fore. You kicked something off that shows just how real and human some people are on here . Normally following a thread I would be branching off looking at profiles attached to the thumbnail pics of tits, bums, pussies and even cocks. With this thread it hasn't happened once as people spill out their thoughts and hearts. It restores my faith in human nature . I've had dementia in my family my father had it and what really affected me was at the end I would visit despite not having a clue who i was his ramblings included all sorts of things about his past that were never mentioned , what happened in the war and women in his life etc leaving so many unanswered questions. The doctor told me that they were probably true but nobody knows for sure. So thank you again Sparkle from someone who has reached an age ,70, when everytime I forget someones name, the right word etc is a worry but i know that the fact it worries me means I'm ok. Thanks to all the other contributers too i usually have various reactions to posts on here not just the obvious ones but this is the first that had bought tears to my eyes xxxxxxxxxxxx |
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By (user no longer on site)
over a year ago
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"Ah Sparkle. It’s one of the cruellest diseases to watch steal your person a bit more every day.
I find it hard to deal with the temper tantrums and aggression without losing the plot myself.
I have no advice. Just take it day by day and make sure you look after yourself as well.
Thank you. I thought with all my training and knowledge I would be ok but that has all gone out the window xx"
So sorry to read what you are going through. It really is a cruel disease and it is exhausting m/heartbreaking and I think you feel every emotion on the planet when a loved on is suffering.
My Nan in law had Dementia, my son would visit her everyday, then one day she got upset because she didn't recognise him, she was remembering him as a little boy and didn't recognise the man stood in front of her
Then when my Father in law died we made the decision not to tell her because we didn't want her to go through the perpetual cycle of forgetting, then being told and forgetting. Broke my heart not to tell her but but better than breaking hers perpetually
Just look after yourself and don't feel guilty for taking time for you. Hope you have support too
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My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near. |
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By (user no longer on site)
over a year ago
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near. "
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them |
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them "
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive |
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive"
Can I suggest that you call the help line run by the dementia charity? They will be able to advise you, especially where your dad's aggression is concerned.
I don't know your parents situation obviously but have they had a financial assessment? |
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By (user no longer on site)
over a year ago
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"Dementia...The longest goodbye ever.
In my profession I deal with people who have dementia. It's a cruel and unforgiving disease. I witness first hand the devastation this causes family members and some struggle to come to terms with how their loved ones act/are.
The person affected remains oblivious and are happy in their own little word but each day their family lose another little piece of their loved ones.
I thought with my training and job, I would be strong enough to deal with dementia but now that it has hit so very close to home, I am really struggling.
To those of you who may be in this situation and are coping, I applaud you x"
Lovely acknowledgement |
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"Does anyone ever feel guilty for having fleeting moments of happiness / normality?
I started to feel that way and had to kick those thoughts to the kerb"
No Bussy I don't... any more. You shouldn't either. One of the biggest hurdles I've had to jump is accepting that I cannot do it all, I can't make it better, I can't get them to accept the help they so obviously need, it's just not possible.
You need to have as normal a life as possible in order to help them. You'll feel guilt, you will have built piled upon you and other people will guilt trip you but you *are* doing your best and absolutely deserve time to yourself, hours of happiness and relaxation free of responsibility. X |
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By (user no longer on site)
over a year ago
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"Does anyone ever feel guilty for having fleeting moments of happiness / normality?
I started to feel that way and had to kick those thoughts to the kerb
No Bussy I don't... any more. You shouldn't either. One of the biggest hurdles I've had to jump is accepting that I cannot do it all, I can't make it better, I can't get them to accept the help they so obviously need, it's just not possible.
You need to have as normal a life as possible in order to help them. You'll feel guilt, you will have built piled upon you and other people will guilt trip you but you *are* doing your best and absolutely deserve time to yourself, hours of happiness and relaxation free of responsibility. X"
Today I have been *guilted* into taking them to Dunelm
That's how bad it's got   |
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near. "
This is me too. As well as having a child with special needs. My brother lives miles away too. It’s draining me but I can’t bring myself to involve carers I just can’t do it so I will do it as long as I am able. Luckily I work from home and she lives 5 minutes away. x |
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"Does anyone ever feel guilty for having fleeting moments of happiness / normality?
I started to feel that way and had to kick those thoughts to the kerb
No Bussy I don't... any more. You shouldn't either. One of the biggest hurdles I've had to jump is accepting that I cannot do it all, I can't make it better, I can't get them to accept the help they so obviously need, it's just not possible.
You need to have as normal a life as possible in order to help them. You'll feel guilt, you will have built piled upon you and other people will guilt trip you but you *are* doing your best and absolutely deserve time to yourself, hours of happiness and relaxation free of responsibility. X
Today I have been *guilted* into taking them to Dunelm
That's how bad it's got "
Good God man! Get help and fast. Dunelm
Garden centres with various cardigan shops and large Christmas displays used to be my parents guilt venue of choice. Nowadays my dad just takes my daughter to one side to tell her to "tell her mother" how bad things are for them...as if I don't know .
Check out the hall runners at Dunelm for me |
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By (user no longer on site)
over a year ago
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive"
Fair enough 
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By (user no longer on site)
over a year ago
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive"
We thought the carers were expensive.... until mum went into a care home £1,600 per week
Plus lots of extras for the hairdresser, having her nails done (they painted her nails but didn't scrape the s**t out from under her nails) plus other activities ! |
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive
We thought the carers were expensive.... until mum went into a care home £1,600 per week
Plus lots of extras for the hairdresser, having her nails done (they painted her nails but didn't scrape the s**t out from under her nails) plus other activities !"
Yeah a decent care home will start at £1500 per week which when you consider what's involved isn't a bad price.
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By (user no longer on site)
over a year ago
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Accept as much help as you can if you're caring for someone. Your own health will deteriorate if you don't.
I myself am looking at a 2nd spine operation due to lots of lifting of an elderly family member with the onset of parkinsons,( though i'm getting help with it now- but i wasn't for quite a while)
My own dad had dementia at the end of his life. He didn't even know I was his son, he just referred to me as "nurse" when he saw me.
I understand/sympathize for anyone going through this.
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"Accept as much help as you can if you're caring for someone. Your own health will deteriorate if you don't.
I myself am looking at a 2nd spine operation due to lots of lifting of an elderly family member with the onset of parkinsons,( though i'm getting help with it now- but i wasn't for quite a while)
My own dad had dementia at the end of his life. He didn't even know I was his son, he just referred to me as "nurse" when he saw me.
I understand/sympathize for anyone going through this.
"
I agree. Although the only help you can really rely on is paid help. The only three people I can 100% rely on are my husband and our daughter and her partner.
Hope you recover quickly from your spinal surgery.
Great hair by the way |
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"My Dad’s suffering from this, and I think Mum’s heading the same way… exactly the same early signs. Sadly there’s only me to give them any real help. It’s very draining, and my prospects for any kind of life in the next few years is bleak. Luckily I live fairly near.
Could you get carers in to help with everyday tasks ?
My mum fought against that but we insisted (all of us work) and it turned out to be a good thing because the carers were lovely and mum liked them
They’ve both got carers, but they don’t let the carers do much. Mostly they administer medication and chat with them. It’s the daily abuse I receive from Dad, and the fact that Mum’s so petrified of him that makes things so difficult for me to step back.
True though, the carers are lovely… but very expensive
We thought the carers were expensive.... until mum went into a care home £1,600 per week
Plus lots of extras for the hairdresser, having her nails done (they painted her nails but didn't scrape the s**t out from under her nails) plus other activities !
Yeah a decent care home will start at £1500 per week which when you consider what's involved isn't a bad price.
I disagree, i would agree if the carers got a decent wage but they don't. Plus seeing the owner driving a very expensive flash car but my mum still has s**t under her finger nails. The staff need more money and more training. "
Fair enough. |
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By *mmMandyTV/TS
over a year ago
Southampton |
I remember going to help my elderly stepmother to raise her legs into the car, she looked at me with total terror as she did not recognise me, I backed away immediately,
At the end she was happy in her own world, she would talk to her dead mother for hours on end, I really think she was in an alternate reality, and felt no distress, but for years she new it was coming and that did cause her distress as she was aware of the burden she was to become, and quietly wondered if she would be abandoned
She wasnt abandoned, but its hardest on the carers, my father had to look after her every need, including "intimate cleansing" where she would scream thinking she was being assaulted. its very tough on those that love |
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My experience of care facilities both rehab and the "standard" care home environment is generally very good. I'd say that if possible you need to ensure that you visit people as often as possible just as you would in their own home. However living in a heated, en suite room where you have staff on call 24/7, all drinks and meals provided, personal care provided, activities on hand, a cleaner and gardener, regular outings, emotional support and laundry done doesn't come cheap.
I would expect "extras" such as hairdressing, manicures, clothes etc to be paid for by the person themselves, after all those things aren't included in rent, mortgage or council tax for the rest of us.
I know others experiences aren't as positive and I agree that the staff should be paid more. It's strange to me that we place a higher monetary value on a footballer than the people who care for our most vulnerable. |
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By *icketysplitsWoman
over a year ago
Way over Yonder, that's where I'm bound |
"Does anyone ever feel guilty for having fleeting moments of happiness / normality?
I started to feel that way and had to kick those thoughts to the kerb
No Bussy I don't... any more. You shouldn't either. One of the biggest hurdles I've had to jump is accepting that I cannot do it all, I can't make it better, I can't get them to accept the help they so obviously need, it's just not possible.
You need to have as normal a life as possible in order to help them. You'll feel guilt, you will have built piled upon you and other people will guilt trip you but you *are* doing your best and absolutely deserve time to yourself, hours of happiness and relaxation free of responsibility. X
Today I have been *guilted* into taking them to Dunelm
That's how bad it's got "
Long may that phase continue.
It was actually caring for my mother and aunt that led me to ending my very long celibacy. I needed something that felt life-affirming and just for me. That led to Fab...
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By (user no longer on site)
over a year ago
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"Does anyone ever feel guilty for having fleeting moments of happiness / normality?
I started to feel that way and had to kick those thoughts to the kerb"
|
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"We're contemplating going away for the Christmas period but feel incredibly guilty for even considering it 
For the last six or more years I've felt uneasy about going on holiday. This was in part because on the day or two before we went my mum would usually have an "episode" . Finally I realised that it made no difference whether I went or not and if something happened while I was away it wouldn't be my fault. I hope you can achieve that mind set and enjoy a family Christmas away "
I'm currently arguing with my brother because he just expects that, like every year since I got my own place (I was 18), I will host my Dad, at my expense. I will collect him and drive him home. Etc. I've just suggested we might go away and currently getting every excuse in the book.
It might sound callous to people here but with the year/eighteen months we've had as a family, I really can't abide the idea of Christmas being me babysitting my Dad again. I've had enough of everything. My brother is here, in the same town as me, so equally far from Dad. He can amend his plans to include Dad because he didn't even stop to consider him at all. |
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"We're contemplating going away for the Christmas period but feel incredibly guilty for even considering it
For the last six or more years I've felt uneasy about going on holiday. This was in part because on the day or two before we went my mum would usually have an "episode" . Finally I realised that it made no difference whether I went or not and if something happened while I was away it wouldn't be my fault. I hope you can achieve that mind set and enjoy a family Christmas away
I'm currently arguing with my brother because he just expects that, like every year since I got my own place (I was 18), I will host my Dad, at my expense. I will collect him and drive him home. Etc. I've just suggested we might go away and currently getting every excuse in the book.
It might sound callous to people here but with the year/eighteen months we've had as a family, I really can't abide the idea of Christmas being me babysitting my Dad again. I've had enough of everything. My brother is here, in the same town as me, so equally far from Dad. He can amend his plans to include Dad because he didn't even stop to consider him at all. "
I think one needs to harden oneself to an extent to be able to keep caring effectively. I'm not Mother Teresa although I am nearly as wrinkly |
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"We're contemplating going away for the Christmas period but feel incredibly guilty for even considering it
For the last six or more years I've felt uneasy about going on holiday. This was in part because on the day or two before we went my mum would usually have an "episode" . Finally I realised that it made no difference whether I went or not and if something happened while I was away it wouldn't be my fault. I hope you can achieve that mind set and enjoy a family Christmas away
I'm currently arguing with my brother because he just expects that, like every year since I got my own place (I was 18), I will host my Dad, at my expense. I will collect him and drive him home. Etc. I've just suggested we might go away and currently getting every excuse in the book.
It might sound callous to people here but with the year/eighteen months we've had as a family, I really can't abide the idea of Christmas being me babysitting my Dad again. I've had enough of everything. My brother is here, in the same town as me, so equally far from Dad. He can amend his plans to include Dad because he didn't even stop to consider him at all.
I think one needs to harden oneself to an extent to be able to keep caring effectively. I'm not Mother Teresa although I am nearly as wrinkly "
Getting support from my brother would be a start. He went over to Dad's today after I lost my temper with him. He expected I could go despite still being ill. Whatever I have is so bad for me that I've been ill for over a week. It'd kill Dad if he got it. Pneumonia nearly killed him in Jan 2020. Just driving to do the school run this week has been too much, let alone a 2.5hr round trip etc. |
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By (user no longer on site)
over a year ago
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"Dementia...The longest goodbye ever.
In my profession I deal with people who have dementia. It's a cruel and unforgiving disease. I witness first hand the devastation this causes family members and some struggle to come to terms with how their loved ones act/are.
The person affected remains oblivious and are happy in their own little word but each day their family lose another little piece of their loved ones.
I thought with my training and job, I would be strong enough to deal with dementia but now that it has hit so very close to home, I am really struggling.
To those of you who may be in this situation and are coping, I applaud you x"
I am so sorry, this makes me sad, stay strong if you can my heart goes out to you x |
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"We're contemplating going away for the Christmas period but feel incredibly guilty for even considering it
For the last six or more years I've felt uneasy about going on holiday. This was in part because on the day or two before we went my mum would usually have an "episode" . Finally I realised that it made no difference whether I went or not and if something happened while I was away it wouldn't be my fault. I hope you can achieve that mind set and enjoy a family Christmas away
I'm currently arguing with my brother because he just expects that, like every year since I got my own place (I was 18), I will host my Dad, at my expense. I will collect him and drive him home. Etc. I've just suggested we might go away and currently getting every excuse in the book.
It might sound callous to people here but with the year/eighteen months we've had as a family, I really can't abide the idea of Christmas being me babysitting my Dad again. I've had enough of everything. My brother is here, in the same town as me, so equally far from Dad. He can amend his plans to include Dad because he didn't even stop to consider him at all.
I think one needs to harden oneself to an extent to be able to keep caring effectively. I'm not Mother Teresa although I am nearly as wrinkly
Getting support from my brother would be a start. He went over to Dad's today after I lost my temper with him. He expected I could go despite still being ill. Whatever I have is so bad for me that I've been ill for over a week. It'd kill Dad if he got it. Pneumonia nearly killed him in Jan 2020. Just driving to do the school run this week has been too much, let alone a 2.5hr round trip etc. "
I long ago stopped hoping for support from my siblings. I just ensure that I have nothing to reproach myself for and leave them to it. The ones who make me cross are the younger members of the family who use social media photo ops to imply that they are closely involved in their care |
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Just want to say thank you for the understanding, and for the PMs received. It’s comforting to feel the care from strangers.
I haven’t been online due to more troubles and dramas since my earlier post. |
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Sorry I have not posted, just caught up with all comments.
Thank you to everyone who has posted and kept the thread on the subject. I hope you all find the strength to get through x
I will hopefully get to reply to the PM's I have received x |
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