Living in hell

[Juliecoombs123]

Hi there,
I’ve found myself here due to this horrendous illness that my Mum is suffering with. My names is Julie and I’m married with 2 beautiful daughters who are 9 + 13. My life is blessed...apart from this horrific condition that Is currently destroying my family.

So the story starts around 4 years ago when my mum was diagnosed with mixed dementia. Didn’t come as a shock but more of a relief as we had a reason for her behaviour. Over time obviously she has got worse. My Dad is a very old fashioned man who has kept a lot to himself as to how bad she really is. 3 months ago he himself was diagnosed with kidney cancer and a date was set for him to have his kidney removed which finally happened on Thursday of this week. There was no question that I would care for my dear Mum and asked my Dad many a times about routines, likes and dislikes etc but was always met with a brick wall and fobbed off with “she’ll be fine, you won’t need to do much”. The decision was made that I would come to my parents house to stay, thankfully it’s only 6 Miles from where I live. On Thursday I took my Dad to the hospital for his operation and buckled up for the ride ahead. Nothing could of prepared me for how bad things are. My mum has gone and I’m left with this nervous, sad child who’s walking around in the body of my Mum. I just want my mum back and I’m so sad. I can’t cry in front of her, even though she introduces me to people as her friend .

My husband and I decided to take her to our house today and stay the night (we’ve had bad snow and quite restricted where they live) as soon as she arrived she cried and said she wanted to see my dad at hospital but the snows to bad to make the trek. I decided to bring her back to her own house so she would feel more comfortable. I feel so bad that I tried to get her to stay at my house and now she can’t stop crying. This is no life for either of my parents. My dad is struggling to recover from his operation and should of been home today but won’t be home until at least Wednesday. Is it meant to feel this **** (excuse my French) this is hell x

 

[Beate]

You need to take this opportunity to urgently contact Adult Social Services. Your Dad might be old-fashioned but he has to recover after such a big operation and he should not be saddled with caring for your mother. The duty of care for a vulnerable adult at risk does not lie with any individual but with the state, and you need to tell them so. Explain how much worse the situation is than you thought and that her main carer has just undergone major surgery and needs to recuperate. You will not be betraying him, you will be helping him by doing so.

 

[karaokePete]

I'm sorry that you have had to find TP, but you are welcome and will get support and information here.
You were probably right to take your mum back to her own place as she may have been unsettled by the change of surroundings. It's true that dementia changes a person and may make them more needy but the original person is still there and you have to hold onto that reality. It's just that your parents now need more support, even if they can't see that and don't want to be a burden. Just do your best and be kind to yourself. You aren't in hell, even though it may seem like it - you will find good days and rewards too. Good luck to you all.

 

[Juliecoombs123]

You need to take this opportunity to urgently contact Adult Social Services. Your Dad might be old-fashioned but he has to recover after such a big operation and he should not be saddled with caring for your mother. The duty of care for a vulnerable adult at risk does not lie with any individual but with the state, and you need to tell them so. Explain how much worse the situation id than you thought and that her main carer has just undergone major surgery and needs to recuperate. You will not be betraying him, you will be helping him by doing so.

Thank you for your reply. If I called socia services my Dad would disown me I’m sure. I’ve always promised him I’d care for her if need be. I just feel so lonely and sad. I’m sat in my old bedroom that I grew up in and just can’t beli that we’re in this situation. My husband is about to visit with my children but they can’t stay long as the girls get sad and dressed at the sight of their beloved nanny. Nothing can prepare you for this until you’re in it x

 

[Juliecoombs123]

I'm sorry that you have had to find TP, but you are welcome and will get support and information here.
You were probably right to take your mum back to her own place as she may have been unsettled by the change of surroundings. It's true that dementia changes a person and may make them more needy but the original person is still there and you have to hold onto that reality. It's just that your parents now need more support, even if they can't see that and don't want to be a burden. Just do your best and be kind to yourself. You aren't in hell, even though it may seem like it - you will find good days and rewards too. Good luck to you all.

Thank you so much for your kind words. I just can’t see the wood for the trees right now and have never felt such sadness in my whole 39 years x

 

[Izzy]

Hello and welcome to Talking Point. I'm so sorry to read of your situation. It really is heartbreaking.

You might find it useful to give the Dementia Helpline a ring. The advisors there are very experienced and I'm sure will be able to give you some pointers. This is the link =

https://www.alzheimers.org.uk/info/...03.1182387782.1512408746-555544372.1504370756

The number is 0300 222 11 22. The helpline is open from 9am until 8pm tomorrow.

Please keep posting here as you will get lots of support from our members.

 

[Shedrech]

my goodness Julie, how challenging for all of you
a warm welcome to TP - joining us here won't physically change your circumstances but will definitely mean that you have a lot of support in dealing with them
how wonderful your dad has been in caring so well for your mum - and, dare I say it, how silly in some ways to have cared alone for so long - that's the 'old fashioned way' as you say
I think quite a few of us, as carers, have had a rude awakening at some point, as to how life really is for the person in their lives living with dementia - I had to stay with my dad overnight and couldn't believe how blind I had been to his night-time behaviours, even though I'd spent most of most days with him for a long time
your dad is going to need time to recuperate and rest when he is discharged - make sure that he is not just sent home without some form of care package put in place to support him
your mum too needs a care package of her own - personally, I'd be getting on to their Local Authority Adult Services in the morning, explaining their circumstances and asking for emergency respite for your mum - as you have seen looking after her is a full time job, and with all the will in the world you cannot run your own home, help your dad recover and care for your mum full time; no-one could - at the moment your dad's needs can be provided for in his home, but he cannot provide the level of care his wife needs
whenever you contact Adult Services/Social Services, get a contact e-mail address and ordinary address and follow up any phone call with an account of what was said so that you create a log of the conversation and a 'paper' trail to refer back to
they may try to say that your mum is self-funding so organise respite and home care yourself - so don't go into her finances until they have assessed her care needs (say your dad keeps that all private and you will have to check with him later) - for your info, if your mum alone (NOT your dad) has savings (or half joint savings; NOT their house) over £23250 she will have to fund her own care BUT that doesn't mean that the LA can just fob you off with no help
does someone hold Power of Attorney for them - if not it would help you to arrange these for both of them asap so that you can manage their finances in circumstances such as these - they can be filled in online
I am sorry you are all having such a tough time
keep posting here with anything that's on your mind
and maybe also call the AS Helpline as the folk there are knowledgeable and understanding
https://www.alzheimers.org.uk/info/20012/helpline?_ga=2.143062195.721471181.1503062667-213745934.1462100281

cross posted with all your other replies - I take so long to type:-
PLEASE contact Adult Services - your dad NEEDS help even if he says he doesn't want it; of course he will forgive you, maybe after a few choice words though - if you don't, to be blunt, there will be a crisis and you will have to mop up an awful mess
neither he nor you will be letting anyone down - you will be doing the best you can for them both in a situation that leaves very few choices - he will not be able to care for his wife at all if he doesn't recover and has carer breakdown, so accepting support now may actually be the wisest way to help them both
maybe tell your dad, AFTER you make contact, that he and his wife have paid their way all their lives and so earned the right to all the support they can get - if he's like my dad, say you need him to do it for you as you are so worried and feel so bad that you cannot help more (my dad would do anything for me - and it gave him an acceptable way to back down)

 

[Rosettastone57]

Hi there,
I’ve found myself here due to this horrendous illness that my Mum is suffering with. My names is Julie and I’m married with 2 beautiful daughters who are 9 + 13. My life is blessed...apart from this horrific condition that Is currently destroying my family.

So the story starts around 4 years ago when my mum was diagnosed with mixed dementia. Didn’t come as a shock but more of a relief as we had a reason for her behaviour. Over time obviously she has got worse. My Dad is a very old fashioned man who has kept a lot to himself as to how bad she really is. 3 months ago he himself was diagnosed with kidney cancer and a date was set for him to have his kidney removed which finally happened on Thursday of this week. There was no question that I would care for my dear Mum and asked my Dad many a times about routines, likes and dislikes etc but was always met with a brick wall and fobbed off with “she’ll be fine, you won’t need to do much”. The decision was made that I would come to my parents house to stay, thankfully it’s only 6 Miles from where I live. On Thursday I took my Dad to the hospital for his operation and buckled up for the ride ahead. Nothing could of prepared me for how bad things are. My mum has gone and I’m left with this nervous, sad child who’s walking around in the body of my Mum. I just want my mum back and I’m so sad. I can’t cry in front of her, even though she introduces me to people as her friend .

My husband and I decided to take her to our house today and stay the night (we’ve had bad snow and quite restricted where they live) as soon as she arrived she cried and said she wanted to see my dad at hospital but the snows to bad to make the trek. I decided to bring her back to her own house so she would feel more comfortable. I feel so bad that I tried to get her to stay at my house and now she can’t stop crying. This is no life for either of my parents. My dad is struggling to recover from his operation and should of been home today but won’t be home until at least Wednesday. Is it meant to feel this **** (excuse my French) this is hell x

I agree with Beate. I am sure they are going to be many more posters with far more information and experience than me but there comes a point in this scenario with this illness that you have to simply take charge. Things can change very rapidly with dementia and although you may have made promises to your dad sometimes you have to look at the bigger picture. This is about your mum's needs not her wants. You don't say whether there is a power of attorney in place or whether your mum and dad is self funding. There will be lots of things to think about and I'm sure the other posters will be along shortly to give you better advice .

 

[Beate]

Thank you for your reply. If I called socia services my Dad would disown me I’m sure. I’ve always promised him I’d care for her if need be. I just feel so lonely and sad. I’m sat in my old bedroom that I grew up in and just can’t beli that we’re in this situation. My husband is about to visit with my children but they can’t stay long as the girls get sad and dressed at the sight of their beloved nanny. Nothing can prepare you for this until you’re in it x

He will get over it eventually. You cannot take all this on your own, nor should your Dad be burdened by it, especially when recovering from surgery. Please call Social Services. It's in everybody's best interests to get more help in. If this was a child we're talking about, you wouldn't hesitate, would you?

 

[Helly11]

Hi Julie, I just wanted to say how much I empathise with and understand what you are saying about the emotional devastation this horrible condition causes. Both of my parents have dementia and there are times that I feel as if I will never ever be truly happy again. You are so right that 'Nothing can prepare you for this until you’re in it.' And I really feel your sadness. I do, however, find comfort in coming on to Talking Point and realising that others feel the same way. I hope you will find the same comfort, as well as lots of great practical advice.

 

[Juliecoombs123]

Hi Julie, I just wanted to say how much I empathise with and understand what you are saying about the emotional devastation this horrible condition causes. Both of my parents have dementia and there are times that I feel as if I will never ever be truly happy again. You are so right that 'Nothing can prepare you for this until you’re in it.' And I really feel your sadness. I do, however, find comfort in coming on to Talking Point and realising that others feel the same way. I hope you will find the same comfort, as well as lots of great practical advice.

Thank you Helly. Today has been a bit better but still this awful empty feeling in my tummy and the constant feeling of wanting to cry. Am hoping my Dad will be home tomorrow and I can at least get a good nights sleep (may sound selfish but has my thyroid removed on January of this year so struggle with tiredness) am noticing some new behaviours today and am hoping it’s just stress but she can’t sit still for move than 3 minutes and is constantly twiddling her thumbs. The vacant look is just devastating. We sat and wrote some Christmas cards together this evening and after 6 we gave in as it was too stressful for her. I feel so much for you if both your parents are suffering from this. That must be horrendous for you. I’m glad we all have this forum so we can talk to people who truly understand what our lives are like x

 

[karaokePete]

Your mums activity may be anxiety, which is understandable given what is going on with both her and her OH.

My wife was like that on a long term basis and anti anxiety meds eased the problem. Just keep an eye on it and talk to the GP or Consultant if it carries on too long

 

[Juliecoombs123]

Your mums activity may be anxiety, which is understandable given what is going on with both her and her OH.

My wife was like that on a long term basis and anti anxiety meds eased the problem. Just keep an eye on it and talk to the GP or Consultant if it carries on too long

Thank you. I did wonder if that was the case. I’m just praying that she’ll be better once my Dad is home and normal service as such can be resumed x

 

[Helly11]

Hi again, Julie. My mum can't sit still either, but I've recently discovered she finds music DVDs very engaging - I have played an old John Denver one a couple of times recently and she has been totally absorbed. Even my dad stays awake for it! It might be worth a try as a distraction, but as others have said, it is a particularly difficult time with your dad being away. The music might work as a longer term strategy under more normal home conditions.

The feeling as if you want to cry all the time is all too familiar to me, I'm afraid! I can be having a good day, then one text about something weird that Mum has done sends me into a gloom. Hilariously, I now look back on those days when only Mum had dementia as the good times... If it weren't for the live-in carer who moved in with them at the end of October, it would now be impossible to have them at home.

Oh, and I also struggled to get Mum to write her cards - I had to talk her through every word. Yet only an hour earlier, she had successfully completed a crossword at 100mph. It is, to say, least a mystifying and challenging conditilon to deal with. Thinking of you. xx

 

[jugglingmum]

Not really got much to add, but just to say I was plunged into dementia crisis when my kids were 8 and 12, they are now 12 and 16.

My mum got lost on the way to my house for her Christmas visit, we realised something was badly wrong, she told us the state of her house, and we couldn't let her go back. It too 3 months to find her somewhere to live which were really hard as I negotiated the minefield of dementia about which I knew nothing.

I do understand the description of hell.

In the short term you probably need to stabilise things, but this could be a long haul, and you need to consider that your kids are at a crucial time in their lives where they need mum and dad, and you need to work out how much you can or can't do to support your parents. You don't say if you work.

It is very hard to be the adult to a parent, but before I found this website (a week after crisis hit) I knew I couldn't have mum stay for any length of time, and I found her a sheltered extra care flat, and if I hadn't found that she would have gone into a home. I wasn't prepared to sacrifice my children's lives to look after my mum.

As others have said you need to take charge, of things, and you need to get as much support in place as possible. You dad clearly is ill, and has not faced up to the issues. As others have posted you really need to try and sort out emergency respite if you are not going to burn out. This is not failing, this is actually succeeding and enabling you to care for your mum.

My mum was very anxious to start with and a stable environment, with not too much stimulation has much reduced this.