Feeling lost and alone

[MrsScooby]

My aunt is on her third hospital stay in 4 months, having managed less than 4 weeks in her assessment placement, which was traumatic for everyone, but especially her. Her medical record finally has a diagnosis of dementia (not specified, but likely vascular as per the hospital doctors), but its now her heart that is failing. They are getting things under control, but it's a delicate balancing act to get the medication right, due to side effects, not helped by her 'challenging' and self destructive behaviour predominantly not eating or drinking and exit seeking. I know all this is not new to most people on this forum, and I also am acutely aware that my situation pails into insignificance when I read how some of you are managing under tremendous strain, but I just feel...........like I have a scream in my chest that wont come out. I have never felt so low, so alone, so lost. Seeing how she is, (bear in mind this all started just 5 months ago and the change in her is stratospheric) is beyond heartbreaking, and I simply do not know what to do for her. Conversations are so so difficult, she berates me yet in the next breath cries for me to stay with her 24/7. I question every decision I make over what to do for her, and there are times when all I want to do is cry. There is only me, so I am trying to get through this maze as best I can. I don't know what I am looking for from this post, I suppose just an opportunity to get things on 'paper' to help free some brain space for the next thing I have to do???

Sending love to everyone out there seeking support and fellowship in this poopstorm of a situation, and if you are reading this, thank you for spending the time.

 

[SherwoodSue]

So tough when it seems there is no one else who sees
No one else to bounce ideas off.
We are here x

I also booked in for a counsellor for a while.
You are doing really well. Honestly. It’s the roller coaster that kills

 

[MrsScooby]

Thank you for taking the time to reply. I just want to see her settled and cared for, but it feels like one step forward and two steps back at the moment. It is starting to affect both my mental and physical health so I think some counselling might be a good call. I just keep telling myself "this too shall pass".

 

[Kevinl]

"like I have to scream in my chest" I've never heard that expression before but I so understand what you mean by it, made me smile just reading it that and poopstorm.
Thank you for making me smile. K

 

[MrsScooby]

"like I have to scream in my chest" I've never heard that expression before but I so understand what you mean by it, made me smile just reading it that and poopstorm.
Thank you for making me smile. K

You are very welcome. Anything that raises a smile is a bonus

 

[Saralara]

@MrsScooby the change has been pretty sudden and we are not robots that can switch our emotions in an instant. I have no words of wisdom other than be kind to yourself and allow yourself to feel sad, tearful, helpless, relieved and all the things that this whirlwind of a situation brings up in you. im not sure you have any choice.
It really is a roller coaster of extremes. I too feel like I have been put through the wringer over the last few months and I really have no idea when this frightful journey of seeing a loved one disintegrate before your eyes will end - but it will at some point.
Keep posting on this site for support and know that you are not alone in the way you feel. x

 

[Kevinl]

I really think it's good you care for an aunt in the way you do, my wife's mum died when she was only 5 years old so she never really had a mum as such, she was brought up by her big sisters quite a bit older than her so we helped them, that's what (some) families do. K

 

[MrsScooby]

I really think it's good you care for an aunt in the way you do, my wife's mum died when she was only 5 years old so she never really had a mum as such, she was brought up by her big sisters quite a bit older than her so we helped them, that's what (some) families do. K

I grew up with my aunt, so she's always been there, I think it's that that makes things harder. I feel responsible to do the right thing for her, which I know is not what she wants as she thinks she can look after herself and says she doesn't need help....except she also wants me to move in to look after her. Not sure OH would be appreciative of that.......he can't cook!!

 

[MrsScooby]

I really think it's good you care for an aunt in the way you do, my wife's mum died when she was only 5 years old so she never really had a mum as such, she was brought up by her big sisters quite a bit older than her so we helped them, that's what (some) families do. K

I grew up with my aunt, so she's always been there, I think it's that that makes things harder. I feel responsible to do the right thing for her, which I know is not what she wants as she thinks she can look after herself and says she doesn't need help....except she also wants me to move in to look after her. Not sure OH would be appreciative of that.......he can't cook!!

 

[MrsScooby]

@MrsScooby the change has been pretty sudden and we are not robots that can switch our emotions in an instant. I have no words of wisdom other than be kind to yourself and allow yourself to feel sad, tearful, helpless, relieved and all the things that this whirlwind of a situation brings up in you. im not sure you have any choice.
It really is a roller coaster of extremes. I too feel like I have been put through the wringer over the last few months and I really have no idea when this frightful journey of seeing a loved one disintegrate before your eyes will end - but it will at some point.
Keep posting on this site for support and know that you are not alone in the way you feel. x

Thank you - it's so good to know there are people who understand, and care.

 

[TMH]

My aunt is on her third hospital stay in 4 months, having managed less than 4 weeks in her assessment placement, which was traumatic for everyone, but especially her. Her medical record finally has a diagnosis of dementia (not specified, but likely vascular as per the hospital doctors), but its now her heart that is failing. They are getting things under control, but it's a delicate balancing act to get the medication right, due to side effects, not helped by her 'challenging' and self destructive behaviour predominantly not eating or drinking and exit seeking. I know all this is not new to most people on this forum, and I also am acutely aware that my situation pails into insignificance when I read how some of you are managing under tremendous strain, but I just feel...........like I have a scream in my chest that wont come out. I have never felt so low, so alone, so lost. Seeing how she is, (bear in mind this all started just 5 months ago and the change in her is stratospheric) is beyond heartbreaking, and I simply do not know what to do for her. Conversations are so so difficult, she berates me yet in the next breath cries for me to stay with her 24/7. I question every decision I make over what to do for her, and there are times when all I want to do is cry. There is only me, so I am trying to get through this maze as best I can. I don't know what I am looking for from this post, I suppose just an opportunity to get things on 'paper' to help free some brain space for the next thing I have to do???

Sending love to everyone out there seeking support and fellowship in this poopstorm of a situation, and if you are reading this, thank you for spending the time.

I agree with MrsScooby, the rollercoaster effect is very real. I'm an only child and over 18 months into dad's diagnosis I'm still on the rollercoaster. You get over each drop in time. You say it's only been 5 months, that's your first drop and it is such a shock. The lack of tangible physical help is atrocious in this country. Plenty of people at the end of a phone giving "advice" but nobody there when you're dealing with the nitty gritty on the daily. Be kind to yourself and give yourself time to adjust to the drops, it'll be the one thing that saves your sanity. Good luck, we're all here when you are able to release that scream 🥰

 

[MrsScooby]

Thank you. You are so right about the lack of support, the care system is beyond disjointed. I spent an hour with her last SW, helping him complete a Strength Based Assessment when she was in her D2A placement, only to be told later the same day that because she had gone back to hospital he would have to close his file and pass the baton to a hospital SW, who - and here's the bit you couldn't make up - would have to start again and could not be passed any notes or forms already completed! Thankfully I had done a lot with the SW by email, so I transposed the notes I had made to Word and am ready to present them to yet another SW when she's back in the community! Is it not enough that we go through the emotional and physical stress of having our loved ones quite literally disintegrate before our eyes, without the system strangling us with inefficiency and impracticality. Why can't one SW be assigned to stick with the PWD and the family from day one? Surely that would allow for greater insight as to the needs of the PWD/family, act as a central hub when needing additional or alternative support from other agencies, act as advocate when needed as well as allowing the PWD to build trust with the SW which is so so important.

Well that turned into a bit of a rant didn't it. Once you start you can't always stop can you? 🤪

 

[Alisongs]

My aunt is on her third hospital stay in 4 months, having managed less than 4 weeks in her assessment placement, which was traumatic for everyone, but especially her. Her medical record finally has a diagnosis of dementia (not specified, but likely vascular as per the hospital doctors), but its now her heart that is failing. They are getting things under control, but it's a delicate balancing act to get the medication right, due to side effects, not helped by her 'challenging' and self destructive behaviour predominantly not eating or drinking and exit seeking. I know all this is not new to most people on this forum, and I also am acutely aware that my situation pails into insignificance when I read how some of you are managing under tremendous strain, but I just feel...........like I have a scream in my chest that wont come out. I have never felt so low, so alone, so lost. Seeing how she is, (bear in mind this all started just 5 months ago and the change in her is stratospheric) is beyond heartbreaking, and I simply do not know what to do for her. Conversations are so so difficult, she berates me yet in the next breath cries for me to stay with her 24/7. I question every decision I make over what to do for her, and there are times when all I want to do is cry. There is only me, so I am trying to get through this maze as best I can. I don't know what I am looking for from this post, I suppose just an opportunity to get things on 'paper' to help free some brain space for the next thing I have to do???

Sending love to everyone out there seeking support and fellowship in this poopstorm of a situation, and if you are reading this, thank you for spending the time.

Really feel for you. Husband 9 months between diagnosis and current moderately severe dementia. Also Parkinsons and type 1 diabetes. It's all far too fast for you to digest, (let alone auntie) and it's not a sloping decline but a succession of cliff edges to fall off. Do the screaming and crying you feel you need. Bottling up could make you explode. Ring the Samaritans,perhaps . They listen, they don't judge or offer pat solutions. I have been venting in a page a day diary since Lockdown about my husband's increasingly odd behaviours. It helps me and provides a record which reduces self doubt. Just do your best and know it's out of love for your aunt. Anger, mood swings, contradictions, anxiety, paranoia, that's not your aunt. It's the dementia. You are not legally obliged to care or be responsible. As an independent but vulnerable adult, your aunt is actually the responsibility of social services! Unfortunately the NHS specialists for different ailments do not really coordinate or work holistically with outpatients. In hospital the situation is better. If you had dementia and heart failure and were old, what would you want you family and the professionals to do? That's probably the best way through. Get lots of advice, support and help. Remember, sometimes the best care at home and/or by family is not actually the best thing to happen

 

[TMH]

Thank you. You are so right about the lack of support, the care system is beyond disjointed. I spent an hour with her last SW, helping him complete a Strength Based Assessment when she was in her D2A placement, only to be told later the same day that because she had gone back to hospital he would have to close his file and pass the baton to a hospital SW, who - and here's the bit you couldn't make up - would have to start again and could not be passed any notes or forms already completed! Thankfully I had done a lot with the SW by email, so I transposed the notes I had made to Word and am ready to present them to yet another SW when she's back in the community! Is it not enough that we go through the emotional and physical stress of having our loved ones quite literally disintegrate before our eyes, without the system strangling us with inefficiency and impracticality. Why can't one SW be assigned to stick with the PWD and the family from day one? Surely that would allow for greater insight as to the needs of the PWD/family, act as a central hub when needing additional or alternative support from other agencies, act as advocate when needed as well as allowing the PWD to build trust with the SW which is so so important.

Well that turned into a bit of a rant didn't it. Once you start you can't always stop can you? 🤪

No you can't and it's understandable because it's only people who are going through the same thing that can understand. We don't have a social worker. I tried all that in the beginning and it was more hassle than it was worth, they were utterly useless so I got rid of them and I manage by myself. They can all ****** off because the system makes things ten times harder than it needs to be x