Feeling so desolate and don't know what to do??

[Beannie]

Hi

I have previously posted under I have a partner with dementia. However, my OH died on 4th March after contracting sepsis a serious UTI, pneumonia and Australian flu, on top of his early onset Parkinsons Disease and Alzheimers Dementia, which we had battled for 8 years, I say we as it affected me and our family as well.

My Mother aged 95 has mixed Alzheimers Dementia and has had several A & E visits for minor things she has blown out of all proportion. The latest one being she couldn't get out of bed when the Carers arrived, my brother was visiting her that weekend, so I could have a day out with an old school friend. They got her in a chair and she said she couldn't get out of it. Consequently the Carer after consulatation with her office said they needed Paramedics. They arrived and tried to take blood from her thumb and true to form she was screaming No No like a 'mad woman' eventually they held her hand/arm and took it. She was then screaming about pain in her chest!!! They took her to A&E and nothing was found, it was suggested A&E was not the place for her as it was more than likely an age related mobility thing, which is about right. She does nothing just sits in her chair for about 15 hours a day only getting up for the toilet ( which she often doesn't flush - despite notices reminding her) or to attempt to make a cup of tea, which she then doesn't drink. I have been giving supplementary care for 2 hours a day for 2 years, even when my OH was dying, and cannot do this anymore. I have health problems of my own including Atrial Fibrillation and severe Arthritis as well as having a skin cancer removed!! I am nearly 66 myself and cannot do this anymore. I also need 2 knee replacements which will put me out of action for 6-12 months.

She has 4 Carers a day but frequently refuses help!! She is on a fluid restriction of 1.5 litre of fluid a day and the Carers leave her with drinks and these usually remain untouched. She also has a habit of putting her gas fire on in the lounge - yes even in this stifling heat!! She puts soiled clothes away and then insists to the Carers the next day they are washed and clean!! She cannot understand simple written instructions and the Carers have recently found her boiling 5 eggs!! the pan was minutes away from catching light. She had a child lock on the freezer as she has the habit of getting frozen ready meals out piercing the film lid leaving to defrost on windowsill and then 2 hours later changing her mind putting the meal back and getting something else out, I know this as I caught her one afternoon. I say had a child locks, she spent one afternoon cutting it off with a sharp knife one slip and goodness knows what would have happened. The Carer recently found the microwave on for 35 minutes for a 4 minute ready meal and that was about to catch fire. There are no longer any food items she can cook so now she puts pans of just water on!!!

After the last A&E admission she was sent to a Council run/funded Assessment Home. The Social Worker has said because she wants to come home that it is how it will be. She would be fully self funding as she owns her bungalow outright and won't be seeking funding from LA. My brother(who lives 200 miles away) and I have a meeting with Social Worker tomorrow afternoon and I know how it will go, having dealt with them regarding my OH. I have had no time to deal with my own grief, have time for myself, days/weekends out, so I am only going to go to her twice a week on Thursday and Sunday afternoons. I expect there will be those who call me callous and uncaring, nothing could be further from the truth but I cannot give anymore. I have looked after her for 30 years since my Father died leaving her a widow at 65 - same age as me by the way!! I have had Counselling to deal with the guilt I felt over my OH's death having to bring into play my POA for his health as he was unconscious for last 3 weeks of his life. She told me I have to let the Care Package fail and then permanent care will be the only option.

Sorry for long post but I don't know where to turn and needed to let it all out!!!

Thanks for taking time to read what is probably the longest rant in history!!

 

[Bunpoots]

It's so easy to drift into caring, I've seen it many times in my own family, and so hard to get out of it once expectations have been set up.

Far from being "callous and uncaring" it sound to me as if you have given your all and you now need to step back. I've reached this point with my own dad, and now go only 2-3 times a week to deliver supplies and shopping and make sure he's ok (except he's ill at the moment so I've been up 3 times yesterday and once already today).

I hope the social worker sees sense as your mum really doesn't sound safe at home. My dad doesn't do anything, he just waits for his servants (carers and me) to cater to his needs so he's normally quite safe.

Good luck and please don't feel guilty. You have nothing to berate yourself for!!

 

[karaokePete]

Rant away, that's part of what TP is here for. In any case, you have so much happening that anyone would need a good rant.

If you feel it would help, don't be afraid to talk to the experts on the help line for any advice about your next step. The details are

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

In case you might find any of the AS Factsheets useful for info, here's a quick link to them https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[Duggies-girl]

It's so easy to drift into caring, I've seen it many times in my own family, and so hard to get out of it once expectations have been set up.

Far from being "callous and uncaring" it sound to me as if you have given your all and you now need to step back. I've reached this point with my own dad, and now go only 2-3 times a week to deliver supplies and shopping and make sure he's ok (except he's ill at the moment so I've been up 3 times yesterday and once already today).

I hope the social worker sees sense as your mum really doesn't sound safe at home. My dad doesn't do anything, he just waits for his servants (carers and me) to cater to his needs so he's normally quite safe.

Good luck and please don't feel guilty. You have nothing to berate yourself for!!

@Bunpoots you are describing me and my dad. I go twice a day and spend about 3 hours each time. Dad just sits in his chair waiting quite happily, I am sure he thinks he is in a hotel. I judge him to be safe at the moment. Sometimes he moves his nicknacks around but not much more than that these days.

@Beannie I think you have reached the end of your tether. Nobody could have done more than you have, you have gone way beyond what I could have coped with and it is time to take care of yourself. Do not feel guilty.

 

[kindred]

Hi

I have previously posted under I have a partner with dementia. However, my OH died on 4th March after contracting sepsis a serious UTI, pneumonia and Australian flu, on top of his early onset Parkinsons Disease and Alzheimers Dementia, which we had battled for 8 years, I say we as it affected me and our family as well.

My Mother aged 95 has mixed Alzheimers Dementia and has had several A & E visits for minor things she has blown out of all proportion. The latest one being she couldn't get out of bed when the Carers arrived, my brother was visiting her that weekend, so I could have a day out with an old school friend. They got her in a chair and she said she couldn't get out of it. Consequently the Carer after consulatation with her office said they needed Paramedics. They arrived and tried to take blood from her thumb and true to form she was screaming No No like a 'mad woman' eventually they held her hand/arm and took it. She was then screaming about pain in her chest!!! They took her to A&E and nothing was found, it was suggested A&E was not the place for her as it was more than likely an age related mobility thing, which is about right. She does nothing just sits in her chair for about 15 hours a day only getting up for the toilet ( which she often doesn't flush - despite notices reminding her) or to attempt to make a cup of tea, which she then doesn't drink. I have been giving supplementary care for 2 hours a day for 2 years, even when my OH was dying, and cannot do this anymore. I have health problems of my own including Atrial Fibrillation and severe Arthritis as well as having a skin cancer removed!! I am nearly 66 myself and cannot do this anymore. I also need 2 knee replacements which will put me out of action for 6-12 months.

She has 4 Carers a day but frequently refuses help!! She is on a fluid restriction of 1.5 litre of fluid a day and the Carers leave her with drinks and these usually remain untouched. She also has a habit of putting her gas fire on in the lounge - yes even in this stifling heat!! She puts soiled clothes away and then insists to the Carers the next day they are washed and clean!! She cannot understand simple written instructions and the Carers have recently found her boiling 5 eggs!! the pan was minutes away from catching light. She had a child lock on the freezer as she has the habit of getting frozen ready meals out piercing the film lid leaving to defrost on windowsill and then 2 hours later changing her mind putting the meal back and getting something else out, I know this as I caught her one afternoon. I say had a child locks, she spent one afternoon cutting it off with a sharp knife one slip and goodness knows what would have happened. The Carer recently found the microwave on for 35 minutes for a 4 minute ready meal and that was about to catch fire. There are no longer any food items she can cook so now she puts pans of just water on!!!

After the last A&E admission she was sent to a Council run/funded Assessment Home. The Social Worker has said because she wants to come home that it is how it will be. She would be fully self funding as she owns her bungalow outright and won't be seeking funding from LA. My brother(who lives 200 miles away) and I have a meeting with Social Worker tomorrow afternoon and I know how it will go, having dealt with them regarding my OH. I have had no time to deal with my own grief, have time for myself, days/weekends out, so I am only going to go to her twice a week on Thursday and Sunday afternoons. I expect there will be those who call me callous and uncaring, nothing could be further from the truth but I cannot give anymore. I have looked after her for 30 years since my Father died leaving her a widow at 65 - same age as me by the way!! I have had Counselling to deal with the guilt I felt over my OH's death having to bring into play my POA for his health as he was unconscious for last 3 weeks of his life. She told me I have to let the Care Package fail and then permanent care will be the only option.

Sorry for long post but I don't know where to turn and needed to let it all out!!!

Thanks for taking time to read what is probably the longest rant in history!!

absolutely agree, once you identify yourself as carer, you will be left to cope with atrocious and exhausting caring situations. Please do step back. You have had such a hard time. warmest, Kindred.

 

[Shedrech]

hi @Beannie
I am glad your counsellor has told you that the care package needs to fail for Social Services to see that sadly your mum is just not safe in her own home on her own
and that you heard her words
and that you have posted here and so will read our words
you need to have your own time and space to look to your own health and welfare
you have done as much as is possible for your mum, and the Social Worker needs to step up
if you feel able to, show the SW your post here, it is eloquent and factual and honest, and having read it the SW cannot say they have not been put fully in the picture
maybe, just maybe there will be a surprise at the meeting and the SW will agree the time has come for a move into full time care in your mum's best interests
take as good care of yourself as you have of your mother

 

[kindred]

Hi @Beannie

I was in a similar situation to you. I lived 20 miles away from my widowed 93 year old mum. She was becoming increasingly frail, forgetful, had several falls resulting in 3 fractures including her hip. I was on 24 hour call, working 3 days a week, looking after my granddaughter 2 days a week. Did my mums shopping, prepared all her tiny meals, helped her with house, running my own house, I don’t know how I actually functioned!! She had self funded carers going in 4 times a day but it STILL wasn’t enough. I would do anything for my dear mum BUT enough really did get enough! I found a hidden dressing gown that had caught fire, found her with big bruise on her face that she couldn’t explain....she could no longer take her BP tablets and a whole load of other meds, she kept opening all the blister packs & mixing them up. social services weren’t particularly interested as she owned her own home & any care home would be self funding. My brother stayed well away so there was only me to look after her. My mum accepted that she could not safely be at home any more. She eventually moved into a wonderful care home near me and frequent visits she had and enjoyed. She did say at first she’d like to go home but I had to remind her that how could I continue coping as she was becoming more and more frail because even with carers in attendance it wouldn’t work. I was lucky that she understood this. She received fantastic care in the home and settled quite quickly.

I did not want to put my mum in a care home but it turned out well and she was happy there, plenty of people around, lots going on for the residents.

I would say have a good chat with the SW and say how you feel. You are a human being and deserve a life, you’ve done enough and as much as humanly possible - we want to do all we can to help our ageing parent but there comes a point when you just have to look after yourself.

I hope you can get something sorted quite soon and wish you the best.

What lovely words. You are a human being and deserve a life. Thank you with all heart for saying this. It is true and so many of us feel that it does no longer apply to us once we enter the black hole of dementia. Of course I understand why SW show no real interest in those of us who self fund, but they could at least be helpful ... when I said, please, at least send me a list of local homes they did - photocopied sheets with all the contact details blanked out!

My OH loves his nursing home by the way, there is, as you say, lots going on.
G aka kindred.

 

[Toony Oony]

Hi @Beannie
You have obviously come to the end of your tether.
So many of the incidents you describe with your Mum I recognise - they drove me to distraction with my Mum too. It got to the point (with some good advice on this forum) that I realised she needed more care than I or visiting carers could provide. Moving her to a care home wasn't a lack of caring on my part, far from it, just different, reasoned caring. As I have said on this site before, letting someone else have the responsibility for the ever-increasing 'nuts and bolts' of Mum's care, gives Mum and I much better quality time, as I am not so frazzled and frustrated and my visits are purely for her.

Please look after yourself. I have had a Total Knee Replacement and to get the best from it you need to be in good health. It is a major op that takes a lot out of you - even more so if you need both knees done. I was just recovering from my replacement when I was diagnosed with quite frighteningly frequent AF. This was at a time when Mum's problems really started presenting in force. Stress and worry does heart conditions like this no favours! Thankfully (touch wood) I'm fixed now.

I don't mean to speak out of turn, but you will be of no help to your Mum, if you let your own health suffer. It's exactly like they say in the emergency info on flights - get yourself sorted first, then you can look after those who need help and are vulnerable.

Take care X

 

[father ted]

Beannie, nothing selfish about you at all!

You have your own health concerns to consider and it is so easy as you start to do more and more for another person to put off going to GP, hospital appts or deferring ops that you need because there is nothing in place to provide the cover you need. All that and dealing with bereavement too. Your Mum is not safe as things are and you are doing the responsible thing by making the authorities aware that this vulnerable lady's needs are now beyond what you can provide.
I hope they are prompt and helpful with assistance.

 

[Lindy50]

@Beannie I agree with everyone else here. You have done all you can, and I think should follow your counsellor's advice to let the care package fail. Only then will your mum get the care that she so obviously needs.
Your situation reminds me of my own about four years ago....I reached the point of crawling up the stairs to mum's flat, with her shopping hanging off me in bags! (I too needed a knee replacement, which I've subsequently had, and was diagnosed with AF). I didn't have the courage to back away, and social workers kept insisting that mum had to go/ stay at home, because that was what she said she wanted. So I kept going until I literally collapsed. My subsequent hospitalisation did neither mum nor I any good.....
Mum's in a nursing home now and I am gradually (fingers crossed) regaining my health.
Please follow advice and look after yourself.
Love
Lindy xx

 

[kindred]

@Beannie I agree with everyone else here. You have done all you can, and I think should follow your counsellor's advice to let the care package fail. Only then will your mum get the care that she so obviously needs.
Your situation reminds me of my own about four years ago....I reached the point of crawling up the stairs to mum's flat, with her shopping hanging off me in bags! (I too needed a knee replacement, which I've subsequently had, and was diagnosed with AF). I didn't have the courage to back away, and social workers kept insisting that mum had to go/ stay at home, because that was what she said she wanted. So I kept going until I literally collapsed. My subsequent hospitalisation did neither mum nor I any good.....
Mum's in a nursing home now and I am gradually (fingers crossed) regaining my health.
Please follow advice and look after yourself.
Love
Lindy xx

Lindy, I am so sorry you went through that. I went through similar, crawling up the stairs, begging OH for mercy, please give me five minutes rest ... I am getting my health back but still have a kind of prisoner syndrome whereby I can't go more than about two miles from the house without panicking and thinking I must rush back ... I am so sorry you went through that. What is the point of us being broken? I know, I know, social workers have no money ... it is all hidden under these philosophies of human rights, whereas we seem to have none, as carers. all love, Gxx

 

[Lindy50]

Dear G @kindred
I'm glad you're getting your health back and I hope that in due course you'll feel able to go further from home. I do understand how you feel, I definitely haven't got back the confidence I used to have, even now...
It's ironic really, because years ago I used to lead seminars on carers needs etc, as part of which I used to warn of the danger of carer breakdown. All the theory in the world didn't stop it happening to me....!
Anyway I try to look forward now
All the best to you
Lindy xx

 

[kindred]

Dear G @kindred
I'm glad you're getting your health back and I hope that in due course you'll feel able to go further from home. I do understand how you feel, I definitely haven't got back the confidence I used to have, even now...
It's ironic really, because years ago I used to lead seminars on carers needs etc, as part of which I used to warn of the danger of carer breakdown. All the theory in the world didn't stop it happening to me....!
Anyway I try to look forward now
All the best to you
Lindy xx

Oh now that is so interesting, Lindy. I wonder what your vision of a carer breakdown was? I did at one point ask the social workers what it was and they said when the carer refuses to do it any more ... No, I know about that, am senior mental health worker who has this fear of being out of reach of home. My son asked me, well if it was one of your clients, how would you advise? And fair enough except my clients are in their late teens usually, not 72, so I think a different approach for each age group and circumstance. In my circumstance I would simple advise wait, get healthy, try to get your enthusiasm for life back. That was so interesting Lindy, thank you for telling me that. And I mean, what would happen if we did simply refuse?
love and best, Geraldinex

 

[Lindy50]

Oh now that is so interesting, Lindy. I wonder what your vision of a carer breakdown was? I did at one point ask the social workers what it was and they said when the carer refuses to do it any more ... No, I know about that, am senior mental health worker who has this fear of being out of reach of home. My son asked me, well if it was one of your clients, how would you advise? And fair enough except my clients are in their late teens usually, not 72, so I think a different approach for each age group and circumstance. In my circumstance I would simple advise wait, get healthy, try to get your enthusiasm for life back. That was so interesting Lindy, thank you for telling me that. And I mean, what would happen if we did simply refuse?
love and best, Geraldinex

Hello Getaldine @kindred
Now this could be a very long answer to an interesting question, but I'll keep it short....
I think my definition of carer breakdown is that I lost all sense of who I was and what was in my best interests. My self esteem was at rock bottom, my confidence ditto. Perhaps worst of all, I 'froze' emotionally. I remember at my daughter's wedding three years ago, which I'd helped to organise, literally everyone else cried tears of joy, but me, the bride's mother, could I shed a tear? No! Could I dance at the reception? You guessed it...no. I was just too exhausted, physically, mentally and emotionally, and if I thought of anyone, it was my mum....
So for me it wasn't a case of 'refusing to do it any more'. I simply became unable. I used to cry all the way to mum's, and all the way back, and put on a front when I was with her (which of course I still do). When I finally went for a consultation about my knee replacement, I wept buckets, totally inappropriately, and the poor doctor couldn't work out what was wrong with me. He told me I'd be in a wheelchair within months if I didn't have the operation, so I agreed, but what I really wanted to say was...my knee is the least of it, someone please help me!!
Anyway I could go on....and on....but I won't. I still haven't been able to get back into what used to be my interests, but as you say, I'm giving it time and hoping for the best. I was interested that you went to the library. Being able to keep up interests is, I think, a very good sign.
Wishing you all the very best.
Love
Lindy xx

PS I've re-read your post and I think you may have meant, what was my vision of carer breakdown when I was giving seminars? A different thing altogether.....but I think even then I thought it implied an inability to carry on, I just didn't realise the implications until it happened to me.....

 

[Bunpoots]

I completely understand this @Lindy50. I've had to had over a lot of my dad's care too professionals and I still dread visiting him. I'm emotionally numb, and I have two beautiful young (twenties) daughters who could do with some input from me but all I can thinks of is my dad.

I've just been to see a chiropractor as I've been hobbling since before Christmas. Apparently my right knee and both ankles need 8-12 weeks of rehab. I just hope I haven't done any permanent damage by thinking I'll sort myself out when dad's gone.

I always thought I was tough enough to see it through to the end. My lovely aunt has been phoning me regularly for months and when I told her I'd had to get carers for dad as I could no longer cope she said "Thank goodness!"

I cried.

I'm crying again now thinking about it...

It is time to be me again.

I'll organise the care but I can't do it
(except in an emergency like last nights )

 

[Lindy50]

@Bunpoots i’m thinking ‘Thank goodness’ on your behalf too
I also thought I was strong enough to look after Mum to the end, but I’m not. In fact I think few people are - those who manage it have my total admiration, but I had to accept that I simply couldn’t.
It also wasn’t fair on the rest of my family, who I did neglect when times were worse than they are now (touch wood).
Take care of yourself @Bunpoots
Love
Lindy xx

 

[canary]

Interestingly i started a thread with the title carers breakdown? where I asked the same question and had lots of replies with peoples stories that made me cry. I have not yet reached carers breakdown, but there are times when I think Im very close. I get so that I am totally unable to do anything - my mind just sort of folds in on itself and I can do nothing.

 

[Lindy50]

Interestingly i started a thread with the title carers breakdown? where I asked the same question and had lots of replies with peoples stories that made me cry. I have not yet reached carers breakdown, but there are times when I think Im very close. I get so that I am totally unable to do anything - my mind just sort of folds in on itself and I can do nothing.

I remember your thread @canary and I know what you mean about your mind folding in on itself. Please do act on those times when you feel close to breakdown, before it happens, if at all possible - though I know your situation is difficult. Can you get more support or time to yourself?
It is absolutely true that we are no use to anyone, least of all our PWD, if we ourselves break down
Lindy xx

 

[canary]

Can you get more support or time to yourself?

Working on it, Lindy