The Lemon Fool

Sunnypad wrote:Argh
I can only say this here
Parents
Good grief. Just why?!

Sadly, because that is life. Good for you though.

Dod

We have a family friend who ended up with stress cardiomyopathy after her father was in hospital for six months.

She was about the age I am now. Now, at not yet 50, she walks with a stick and has a very limited life.

When dad was in hospital, at one stage my BP went to 190/? and I joked about it but it's pretty awful really.

I must remember this. I think people who cope well with this sort of thing are able to detach themselves from it.

Not sure if anyone is still reading this
Really not sure how things are
Mum is desperate to come home so I've arranged to have a stairlift fitted

She is adamant she doesn't want carers

She is so frail, and she sleeps a lot. She doesn't want any medical interventions.

I realise she could live like this for years and I would be happier with her staying in care. But she wants to come home and my sister is horrified at the costs eating into her inheritance frankly. Though she might change her mind on seeing mum at the weekend.

I tucked mum up in bed at the care home thinking I wouldn't be at all surprised to get that call in the night...but at the same time, some people carry on like this for years. As evidenced by the geriatric ward.

Hi Sunnypad

I just wanted to reassure you that at least one person is reading your posts and thinking of you. Caring for your parents when they get frail is so hard emotionally, many people will recognise the types of issues that you are facing, all you can do is the best you can.

Gersemi

Thank you Gersemi, much appreciated.

My sister didn't answer the phone tonight, but I know she is beyond the limit of what she can cope with.

I'm still reading, although haven't replied. I tend to only have practical responses though, although a virtual [hug] is here too.

If your Mum is so frail, and doesn't want carers or medical interventions, how does she believe she will cope when she goes home? If the answer is "well you could pop in from time to time" then you need to make sure she understands that you cannot do it all and carers will be necessary at some points of the day / week at least. I know it's a struggle and drains all your well-being energy, but helping a bit is inevitable.

As for your sister's inheritance being spent - she was born with nothing and will take nothing with her when she dies. Inheritances are a lucky bonus if you get one, but if your mother has worked and saved (or if your father did it for her), and needs to spend the money now on care home fees, that's what she was saving for. Equally, if she chose to spend it all on luxury cruises and there was none left for you or your sister, that is also fine.

Thinking of you...

She is so frail, and she sleeps a lot. She doesn't want any medical interventions.

Does your mum have an advanced decision in place, regarding interventions.

My mum is 87, lives alone in a retirement flat in a block with a warden, has dementia. She has recently stated she doesn't want medical interventions . We'll explore the advanced decision option(s).

Best wishes.

BigB wrote:

She is so frail, and she sleeps a lot. She doesn't want any medical interventions.

Does your mum have an advanced decision in place, regarding interventions.

My mum is 87, lives alone in a retirement flat in a block with a warden, has dementia. She has recently stated she doesn't want medical interventions . We'll explore the advanced decision option(s).

Best wishes.

She has a DNR

She has told them she doesn't want a pacemaker or a stent and they said that, given her frailty, it was highly to be offered.

She is reluctant to do a blanket "no procedures" in case it rules out something helpful, but at this stage, it seems unlikely.

She would certainly want antibiotics, so this AM she's woken with a UTI and is in pain so wants that dealt with.

I have LPA. She couldn't sit down with a lawyer etc.

Not sure what to do on that front.

Loup321 wrote:I'm still reading, although haven't replied. I tend to only have practical responses though, although a virtual [hug] is here too.

If your Mum is so frail, and doesn't want carers or medical interventions, how does she believe she will cope when she goes home? If the answer is "well you could pop in from time to time" then you need to make sure she understands that you cannot do it all and carers will be necessary at some points of the day / week at least. I know it's a struggle and drains all your well-being energy, but helping a bit is inevitable.

As for your sister's inheritance being spent - she was born with nothing and will take nothing with her when she dies. Inheritances are a lucky bonus if you get one, but if your mother has worked and saved (or if your father did it for her), and needs to spend the money now on care home fees, that's what she was saving for. Equally, if she chose to spend it all on luxury cruises and there was none left for you or your sister, that is also fine.

Thinking of you...

Sorry, I'm doing that thing when I forget what I have and haven't said. I don't know how she thinks she'll manage either but the reality is I would probably be there 5 days a week. I am not keen to become her carer but okay to be there with support.

I have seen people much more frail than her living alone but I don't want her to do that and neither does she.

I agree re the care home fees but when mum and sis both think they are too high, I am outnumbered. Perhaps I am being selfish because the care home makes my life easier.

I will be stopping work btw. I was very part time and don't wish to continue with mum to deal with as well.

Sunnypad wrote:

Loup321 wrote:I'm still reading, although haven't replied. I tend to only have practical responses though, although a virtual [hug] is here too.

If your Mum is so frail, and doesn't want carers or medical interventions, how does she believe she will cope when she goes home? If the answer is "well you could pop in from time to time" then you need to make sure she understands that you cannot do it all and carers will be necessary at some points of the day / week at least. I know it's a struggle and drains all your well-being energy, but helping a bit is inevitable.

As for your sister's inheritance being spent - she was born with nothing and will take nothing with her when she dies. Inheritances are a lucky bonus if you get one, but if your mother has worked and saved (or if your father did it for her), and needs to spend the money now on care home fees, that's what she was saving for. Equally, if she chose to spend it all on luxury cruises and there was none left for you or your sister, that is also fine.

Thinking of you...

Sorry, I'm doing that thing when I forget what I have and haven't said. I don't know how she thinks she'll manage either but the reality is I would probably be there 5 days a week. I am not keen to become her carer but okay to be there with support.

I have seen people much more frail than her living alone but I don't want her to do that and neither does she.

I agree re the care home fees but when mum and sis both think they are too high, I am outnumbered. Perhaps I am being selfish because the care home makes my life easier.

I will be stopping work btw. I was very part time and don't wish to continue with mum to deal with as well.

I just get the feeling you're going to get lumbered with it all. It's hard to stand up for yourself when you feel outnumbered, but your well-being matters as well. I have a daughter, and my attitude is that I'm no use to anyone if I get to past breaking point, so I have always made sure I have a way out. When she was a tiny baby, I made the decision that if things were getting too much for me, no matter how loudly she was crying, I could put her somewhere safe (like her cot) and leave the room to have a good cry myself until I felt able to deal with her. Because I had that decision, I never felt the need to use it, if you know what I mean. I knew I had the escape if I needed it. Adults are harder to deal with, because they understand how to emotionally blackmail (even if they don't do it knowingly). If you need to be selfish, remind yourself (and others) that you're no use whatsoever if you do reach breakdown point.

If you are going to be the sole carer for 5 days a week, what's going to happen for the other two? You really will need to get outside help in. I think Social Services should be able to arrange an assessment - they did for my Mum when she left a hospital - and then refer you to an agency for the actual carers. However, if you say you're able to cope, they will believe you. My Dad was too proud to ask for help, but he really needed it. And my Mum was a nightmare - even when I was visiting she only wanted to bother my Dad with trivial stuff like she wanted some water, and he just wanted to take advantage of me covering for half an hour so he could sit down listening to the radio in the car.

You say you're okay to be your Mum's carer with support - make sure you get that support. And remember some of it may come from off-loading here as well! (But getting carers in will probably help more...)

Sunnypad wrote:We have a family friend who ended up with stress cardiomyopathy after her father was in hospital for six months.

She was about the age I am now. Now, at not yet 50, she walks with a stick and has a very limited life.

When dad was in hospital, at one stage my BP went to 190/? and I joked about it but it's pretty awful really.

I must remember this. I think people who cope well with this sort of thing are able to detach themselves from it.

I could give you my story looking after my wife full time and driving her to hospital three times a week, a 100 miles round trip, for dialysis but I won’t. I was 58 or so at the time. I suppose we do become detached but I just saw a problem and dedicated myself to getting on with it, knowing that, like your situation, it would not go on for ever.In fact my wife survived for 20 months and I had virtually no time to myself for that time.What you cannot do, if you want to remain sane and strong, is feel sorry for yourself (I am not accusing you of that)

I hope things work out, as they will eventually.

Dod

As a carer, you need support too. Have a look at https://carers.org/help-and-info/carer- ... s-near-you and find your local organisation. They will undoubtedly have expertise to help, support and advise you. I'm sure your situation is one they have seen a hundred times before.

--kiloran

kiloran wrote:As a carer, you need support too. Have a look at https://carers.org/help-and-info/carer- ... s-near-you and find your local organisation. They will undoubtedly have expertise to help, support and advise you. I'm sure your situation is one they have seen a hundred times before.

--kiloran

Things may have changed. When do full time careers get time to see such people? I had some people turn up occasionally, introduced by well meaning family members, but I thought them worse than useless. If they had got stuck in to help with the washing or something that would have been good, but I did not have the time or inclination to listen to them waffling on about the help I could be getting or how and why I needed to take time out.

Dod

Unfortunately elderly parents rejecting carers is the norm but having gone through the same process myself you just have to get tough and arrange for outside help. In the case of my mother no amount of explaining the effects on me of balancing work, my own health following neuro surgery and caring responsibilities for her helped change her mind but her attitude towards carers changed when they actually came and she soon got used to the idea. My mother had frequent falls and the cause was vascular dementia (mild strokes). Gradually they got worse and she ended up in a Nursing Home where she spent the rest of her life in bed. Your posts have brought back memories of experiences I would not wish to go through again but sadly many of us have to deal with issues as parents age.

Dod101 wrote:

kiloran wrote:As a carer, you need support too. Have a look at https://carers.org/help-and-info/carer- ... s-near-you and find your local organisation. They will undoubtedly have expertise to help, support and advise you. I'm sure your situation is one they have seen a hundred times before.

--kiloran

Things may have changed. When do full time careers get time to see such people? I had some people turn up occasionally, introduced by well meaning family members, but I thought them worse than useless. If they had got stuck in to help with the washing or something that would have been good, but I did not have the time or inclination to listen to them waffling on about the help I could be getting or how and why I needed to take time out.

Dod

I guess each local organisation will be different, Dod, but our local carers centre was excellent. We weren't full-time carers for MiL but my wife did find it stressful at times. They ran training courses and chat sessions where my wife could discuss her problems with other carers. The centre could also provide respite carers to look after MiL while wifey was on a training course, though she did not need to use this service. Sunnypad may find that they can suggest solutions which are beyond her imagination. Discussing with the carers centre is the only way to find out. Nothing ventured, nothing gained.

--kiloran

kiloran wrote:

Dod101 wrote:

kiloran wrote:As a carer, you need support too. Have a look at https://carers.org/help-and-info/carer- ... s-near-you and find your local organisation. They will undoubtedly have expertise to help, support and advise you. I'm sure your situation is one they have seen a hundred times before.

--kiloran

Things may have changed. When do full time careers get time to see such people? I had some people turn up occasionally, introduced by well meaning family members, but I thought them worse than useless. If they had got stuck in to help with the washing or something that would have been good, but I did not have the time or inclination to listen to them waffling on about the help I could be getting or how and why I needed to take time out.

Dod

I guess each local organisation will be different, Dod, but our local carers centre was excellent. We weren't full-time carers for MiL but my wife did find it stressful at times. They ran training courses and chat sessions where my wife could discuss her problems with other carers. The centre could also provide respite carers to look after MiL while wifey was on a training course, though she did not need to use this service. Sunnypad may find that they can suggest solutions which are beyond her imagination. Discussing with the carers centre is the only way to find out. Nothing ventured, nothing gained.

--kiloran

Indeed.
We had a few different lots through to help with our in-laws: from the excellently practical (bringing food, doing the dishes, or garden and fitting accessibility aids through the house) to the guy who was getting more out of his chats with my father in law than he was (but I suppose that would have been useful for someone)
You won't know until you investigate what the available options are.

Thank you for all the replies
I will reply properly tomorrow or Saturday but the situation changes daily

It seems mum has realised that it is wrong for me to become Cinderella and is prepared to get people in, but whether or not she will say that tomorrow - well, Saturday as I have other commitments tomorrow so won't see her - I don't know.

I'm sorry so many of you have been through this.

kiloran wrote:

Dod101 wrote:

kiloran wrote:As a carer, you need support too. Have a look at https://carers.org/help-and-info/carer- ... s-near-you and find your local organisation. They will undoubtedly have expertise to help, support and advise you. I'm sure your situation is one they have seen a hundred times before.

--kiloran

Things may have changed. When do full time careers get time to see such people? I had some people turn up occasionally, introduced by well meaning family members, but I thought them worse than useless. If they had got stuck in to help with the washing or something that would have been good, but I did not have the time or inclination to listen to them waffling on about the help I could be getting or how and why I needed to take time out.

Dod

I guess each local organisation will be different, Dod, but our local carers centre was excellent. We weren't full-time carers for MiL but my wife did find it stressful at times. They ran training courses and chat sessions where my wife could discuss her problems with other carers. The centre could also provide respite carers to look after MiL while wifey was on a training course, though she did not need to use this service. Sunnypad may find that they can suggest solutions which are beyond her imagination. Discussing with the carers centre is the only way to find out. Nothing ventured, nothing gained.

--kiloran

I agree with all that you say. I am very independent myself and was probably not very disposed to listening to what these organisations were on about. I certainly found them useless and a few of them came by from time to time. No doubt worth a try for Sunnypad.

Dod

I'm not much inclined to these organisations either

I should say, the expectation is that mum can feed and dress herself so it's more general housekeep but everything comes under care so I get confused. I'll be taking her for walks, for example. Cooking etc.

I am not keen to talk about it in real life. Venting online is good.

I am hoping it won't be that big a deal. If it gets to personal care then she has already said she prefers a carer for that but of course, no one wants to reach that stage. So we don't talk about it, but she has said that much at least.

In my experience carers don't do housekeeping. They are there for personal care only but if pushed might do some shopping for the occasional essetial if it's a local shop.