First post, very long, need help

[Ann Mac]

Ann Mac, OMG, I think you have just documented my biggest fear and I have no idea how you managed to keep going for 3 years. Within myself, I am not particularly optimistic about the psychiatrist appointment tomorrow but have to try.


I am beginning to realise that the dreadful stress of constant arguing, escape attempts, verbal attacks and witnessing the level of distress that persistent delusions can cause the person you love is impossible but at the same time, I am so struggling with the thought of the only realistic alternative. I know in my heart you are right but I suppose I want someone to just take it out my hands in the hope that it alleviates the guilt.


The issue as you know, is you are becoming destroyed and they have absolutely no awareness or recollection so they think everything is peachy when they get up in the morning. I have actually reached a point where despite the fact that I have a huge guilt and don’t know if I can do this, I also have times where I don’t even like her and resent the fact that this is how my life has become.


I guess I just need to reach the stage where I acknowledge I can’t do it any more.

Hi 1Goldring - and lis66,

First of all, hun, the reason why I managed 3 years is simply because, although I was Mils main carer, I wasn't solo - my OH was there, and whilst he was at work and doing long shifts often, he was able to share a lot of the care. Without that, I wouldn't have lasted 3 months, never mind 3 years x I have such admiration for those that are coping without anyone else to share the load , how you do it is completely beyond me!

Yes, I felt guilt when we had to accept that the home was the only option. I won't lie about that, but I also have to tell you that over and above that, there was the gradual but strong realisation that actually, I should have listened to the very wise words of so many wonderfully supportive people on TP, and made that choice a long time before I actually did. For a lot of reasons.

Firstly, It was only after Mil went into residential care that the impact of the 3 years of her living with us, and probably the several years before that when we supported her in her own home, really caught up with me. I simply crashed. Maybe guilt played a small part in that, but mainly it was the result of being exhausted and mentally, physically and emotionally battered from the caring. I cried all the time, I couldn't sleep and I just felt so depressed and low. I ended up on anti-depressants, and I would say it took me 12 months or more before I was even partially back on my feet. The rest of my family, my OH and our youngest daughter who still lives at home, also took a long time to recover. Accepting the inevitable at an earlier stage would have spared us at least some of that - continuing because we had 'promised' we would care for her, because we felt it was the right thing to do and because we were so sure that we couldn't cope with the guilt if we 'put her in a home' (horrible phrase, that!) was a huge mistake, unfair on me, my OH, and on our youngest.

Secondly - you look back and you realise that because it was so hard, because it was having such an impact on you, that actually you weren't giving your loved one the best life possible, despite all your efforts. I ended up actively disliking my poor Mil at times. Because you can tell yourself till you are blue in the face that 'its not them, its the dementia' but that doesn't stop the hurt you feel from the abuse they hurl, or the resentment you end up feeling when nothing you do is appreciated or acknowledged, nor does it help with the fact that you are physically on your knees with exhaustion. Dementia or not, your Mum, like my Mil, will pick up on the way you feel and it will make their behaviours worse, and add to their stress and confusion. You even find yourself, when faced with your loved ones distress, thinking 'Not again', rather than feeling sympathy. And there is nothing, nothing you can do to stop that happening, as long as you are in that situation. Its a vicious, unavoidable circle - the more you are wrecked and beaten down by the 24/7 caring, the more your loved one will pick up on it, the worse the behaviours become and the more it impacts on you and how you are able to cope. There is NO benefit to your loved one, at all. When you are in that situation, the only thing continuing will do is increase the length of time it takes you to recover and adversly affect your relationship with her - it won't make life any better for your Mum.

Since Mil has been in the home, I've found that our relationship has improved 100%. Because I am not the main person she interacts with all the time, slowly but surely, she has stopped making me the person responsible (in her head) for all that made her miserable - the delusions, the paranoia, the fear and confusion. So the verbal abuse and nastiness is now shared out amongst her carers at the home (who go home at the end of the day, and who's encounters with her are limited to two hour blocks of 1-1 care when they are working with her, because they recognise that she is so challenging that actually, even as professionals, more than 2 hours dealing with her is stressful!). A lot of the time, she shows me affection (even if she is no longer aware of who I am to her) and she will joke with me and chat. And I've managed to rediscover how much I love her - and I like her again

Dealing with the medical issues and the authorities was something that I found added hugely to the stress and exhaustion when Mil lived here. Even though she is now in care, often I still have to do battle with those organisations and people. The difference now is I have more energy and strength to deal with them. I'm still caring, only now I am able to be much more effective and on the ball - and it isn't killing me to care!

It isn't failure to accept that you have reached the point where you can't continue. It isn't even you who has made the decision to chose residential care - its the progression of the dementia that has dictated that course of action, hun, and you realising that simply means that you are continuing to do whats best for your Mum - and you xxxx

 

[Norfolk Cherry]

I'm reading all your posts and want to send hugs all round. This was me six months ago. Then my mum got to the point where I'd find her literally sitting outside for long periods of time because she "couldn't bare to be in that prison" Reading your stories makes me realise that even if she'd been put on the medication then, it wouldn't have helped, as she would have deteriorated anyway. I hope I can reassure you about life after being put in a home however. It's turned out to be the best thing for us both. I can visit and give her the attention she needs, she never feels alone, if she's anxious and scared there's an endless round of lovely carers to reassure her, distract her and calm her down, if she falls there's someone to pick her up, she is never wearing grubby clothes or looking unkempt and I feel like my old self (most of the time) There is no short cut I'm afraid, the guilt and fear of leaving her with strangers was horrendous, but they have become my friends. Take care all.

 

[the fairysolaris]

the fairysolaris takes hold your hand and gives it a little squeezey. ….its ok..... breath.....(ooh don't you look at me like that..... fairy frowns and blows raspberry)……..take 5 deep breaths imagine yourself sat astride a satalite in space...i.ve stopped the world so you can get off for just 5 seconds that's all I ask from one who already does sooo much....YOU are not alone.. and don't you ever not even for one second think we don't understand...or I,ll start the the world up spinning again and not let you back on.

ok...welcome back... hug you!xx
Right time to see what this friend of yours is made of .. you need the world from her right now and yes you'll probably spend the rest of your life indepted to her for it.. but that's what friends are for...be calm and honest tell her I am on the edge of a breakdown... I trust you to do what ever YOU need to do to cope..... I have to step away inorder to come back strong enough to deal whatever I have to when I return from this break...make no mistake you will come back strong enough to face the hell with a smile all over again.....( oopsy this will get blocked.....a person can only be expected to take so much …. stick your mum in a box and leave her at the cattery if that's what it takes …...shop , pack, delegate and get your **** on that plane... and make that holiday what ever you need it to be …. you most like aint gonna get one again for a while...
we await the postcard ..ordering you post one in a comment box...… poof ! and the fairy was gonexx

 

[lis66]

Hi 1Goldring - and lis66,

First of all, hun, the reason why I managed 3 years is simply because, although I was Mils main carer, I wasn't solo - my OH was there, and whilst he was at work and doing long shifts often, he was able to share a lot of the care. Without that, I wouldn't have lasted 3 months, never mind 3 years x I have such admiration for those that are coping without anyone else to share the load , how you do it is comple
Yes, I felt guilt when we had to accept that the home was the only option. I won't lie about that, but I also have to tell you that over and above that, there was the gradual but strong realisation that actually, I should have listened to the very wise words of so many wonderfully supportive people on TP, and made that choice a long time before I actually did. For a lot of reasons.

Firstly, It was only after Mil went into residential care that the impact of the 3 years of her living with us, and probably the several years before that when we supported her in her own home, really caught up with me. I simply crashed. Maybe guilt played a small part in that, but mainly it was the result of being exhausted and mentally, physically and emotionally battered from the caring. I cried all the time, I couldn't sleep and I just felt so depressed and low. I ended up on anti-depressants, and I would say it took me 12 months or more before I was even partially back on my feet. The rest of my family, my OH and our youngest daughter who still lives at home, also took a long time to recover. Accepting the inevitable at an earlier stage would have spared us at least some of that - continuing because we had 'promised' we would care for her, because we felt it was the right thing to do and because we were so sure that we couldn't cope with the guilt if we 'put her in a home' (horrible phrase, that!) was a huge mistake, unfair on me, my OH, and on our youngest.

Secondly - you look back and you realise that because it was so hard, because it was having such an impact on you, that actually you weren't giving your loved one the best life possible, despite all your efforts. I ended up actively disliking my poor Mil at times. Because you can tell yourself till you are blue in the face that 'its not them, its the dementia' but that doesn't stop the hurt you feel from the abuse they hurl, or the resentment you end up feeling when nothing you do is appreciated or acknowledged, nor does it help with the fact that you are physically on your knees with exhaustion. Dementia or not, your Mum, like my Mil, will pick up on the way you feel and it will make their behaviours worse, and add to their stress and confusion. You even find yourself, when faced with your loved ones distress, thinking 'Not again', rather than feeling sympathy. And there is nothing, nothing you can do to stop that happening, as long as you are in that situation. Its a vicious, unavoidable circle - the more you are wrecked and beaten down by the 24/7 caring, the more your loved one will pick up on it, the worse the behaviours become and the more it impacts on you and how you are able to cope. There is NO benefit to your loved one, at all. When you are in that situation, the only thing continuing will do is increase the length of time it takes you to recover and adversly affect your relationship with her - it won't make life any better for your Mum.

Since Mil has been in the home, I've found that our relationship has improved 100%. Because I am not the main person she interacts with all the time, slowly but surely, she has stopped making me the person responsible (in her head) for all that made her miserable - the delusions, the paranoia, the fear and confusion. So the verbal abuse and nastiness is now shared out amongst her carers at the home (who go home at the end of the day, and who's encounters with her are limited to two hour blocks of 1-1 care when they are working with her, because they recognise that she is so challenging that actually, even as professionals, more than 2 hours dealing with her is stressful!). A lot of the time, she shows me affection (even if she is no longer aware of who I am to her) and she will joke with me and chat. And I've managed to rediscover how much I love her - and I like her again

Dealing with the medical issues and the authorities was something that I found added hugely to the stress and exhaustion when Mil lived here. Even though she is now in care, often I still have to do battle with those organisations and people. The difference now is I have more energy and strength to deal with them. I'm still caring, only now I am able to be much more effective and on the ball - and it isn't killing me to care!

It isn't failure to accept that you have reached the point where you can't continue. It isn't even you who has made the decision to chose residential care - its the progression of the dementia that has dictated that course of action, hun, and you realising that simply means that you are continuing to do whats best for your Mum - and you xxxx

 

[1Goldring]

Just want to thank everyone for all the responses, comments and advice.

Can’t respond to all but want you to know I appreciate it.

It has been a pretty **** week and the confusion seems to increase day by day.

Saw the psychiatrist Monday 11.2.19, he pretty much said she should not have been taken off memantine and would re prescribe. He was of the opinion that the loss of the pet cat generated a grief reaction and she has gone back in time in her mind. This is unlikely to improve much if at all. This seems to be confirmed by the memories and thoughts she is expressing which all come from earlier years.

Tuesday 12.2.19 she went stone mad at me as she thought I was actually away on holiday but when she saw me she felt I had not come in to see her tell her I was home and just deceitful. I was a liar, couldn’t be trusted and she was leaving the house right now.

I actually left the house and my poor friend was left to try and calm her down.

I went to another friend and called the RITT team back Rapid Intervention and Treatment Team. They are supposed to help in times of crisis!! Well I was just told to try and book her in for emergency respite myself or ring the GP to ask if they would prescribe a sedative.
Rang the GP who was pretty surprised at the response I got but told me to up the dose of Quetiapine and she would get a social worker and mental health nurse to visit the following day.

My friend managed to calm her and told me to come back but be prepared for any reaction.

She was pretty subdued and we got her off to bed.

Wednesday 13.2.19, we got the visit and the SW just asked her if she would be willing to go for respite until meds could e sorted but obviously she point blank refused. Said she could go to her sister and there was nothing much wrong with her!!

SW said they couldn’t force her as they felt she still had capacity!!! In fairness, she put on a pretty reasonable front to them but if they had seen her when they left, they could not possibly say she had capacity.

The GP also asked a nurse practitioner from the surgery to call and do the basic checks of blood pressure heart etc. She was more helpful than anyone and she just said to me “well I know what I have seen and I wouldn’t say she has capacity. She did however say she could prescribe lorazepam which may help to calm the agitation.

It does seem to make her slightly calmer and not nearly as upset but the confusion has just gotten progressively worse by the day.

She still insists she doesn’t live here; she needs to go back as the others will wonder where she is, I am not her daughter her other daughter is either on holiday or at the other house. We have to take her looking for said house!! She needs someone to break the door down as she has lost the keys. Managed to divert her by saying it was too late to get anyone to break in so she would have to stay the night but this is just on constant repeat.

She has my mobile number in her purse so we tried to convince her to ring the mobile and when no one answered told her to just leave a message but she is so not buying in to that one. You just can’t divert her when she starts so at least the lorazepam means she is not so upset and crying or shouting

She wants to know where I lived in Canada and when I came here. I was born in Canada but she separated from my father and came home 59 years ago. She thinks I am my father’s daughter but not hers; he must have re married she says.

My friend has just been an absolute rock and is 100% adamant that I must go on the holiday and she will manage. I have given her details to the GP and given consent for her to act on my behalf if I actually get away, the GP is also telling me I must go.

I have another 2 friends who live locally and they both say they will be here to help and support whatever is needed.

I am going to try and just go for it and I have written back to RITT and said I want her capacity formally checked and at different times of the day as mum can be pretty good at putting on a good front.

I know I cannot continue to live like this but if I get the holiday I may be stronger to do the battle with Social Services when I get back.

Just want to say thanks for all the input.

 

[the fairysolaris]

the fairy smiles … sound like you have good friends that's wonderful , the holiday isn't going to be a barrel of laughs... how could it! loving someone with dementia is a form of grief …

but its the very worse kind because it comes without relief or closure... instead it tortures you ground-hog style. ….. therefore I shan't say “enjoy” your holiday instead I'll just offer you a blessing



a sun-beam to warm you

a moon-beam to charm you

and an all sheltering angel

so nothing can harm you.



I'm sure you will find it therapeutic and I too believe you will come back stronger and more able to cope



AND THAT HAS GOT TO BE WHATS BEST FOR YOUR MUM

hugs

 

[1Goldring]

the fairy smiles … sound like you have good friends that's wonderful , the holiday isn't going to be a barrel of laughs... how could it! loving someone with dementia is a form of grief …

but its the very worse kind because it comes without relief or closure... instead it tortures you ground-hog style. ….. therefore I shan't say “enjoy” your holiday instead I'll just offer you a blessing



a sun-beam to warm you

a moon-beam to charm you

and an all sheltering angel

so nothing can harm you.



I'm sure you will find it therapeutic and I too believe you will come back stronger and more able to cope



AND THAT HAS GOT TO BE WHATS BEST FOR YOUR MUM

hugs

Thanks so much, I believe you are right. I just need to find the strength to deal with this.

 

[the fairysolaris]

Thanks so much, I believe you are right. I just need to find the strength to deal with this.

heheheh yes I usually am . .. look babe the way I see it you have no choice... you HAVE to step away so you have the strength to come back kicking and scream at all the services who are paid to make like they care.... its alright for them its only a job they can leave anytime and get to go home at the end of the day.... BUT YOU well you don't even get the luxury of a nervouse breakdown.... so take control to save yourself so you can fight for mum... cos your BOTH worth it .smiles
the fairy

 

[ANITRAM]

Please consider a care home - it isn’t failing or giving up . After four years caring for my MIL the decision to move her to a CH was taken by the authorities at Christmas. It is now February and today I appreciated seeing the sun shining and the weight of responsibility for her care being shared with so many others has finally made life bearable . You too can share the care with others but don’t need to do this alone .

 

[1Goldring]

Please consider a care home - it isn’t failing or giving up . After four years caring for my MIL the decision to move her to a CH was taken by the authorities at Christmas. It is now February and today I appreciated seeing the sun shining and the weight of responsibility for her care being shared with so many others has finally made life bearable . You too can share the care with others but don’t need to do this alone .

Thanks a lot , appreciate your reply. Like I say, I need to find the strength to do this and truly hope that I can when I return as I know I can't continue like this. Would like the decision to be taken out my hands but realistically I know that won't happen. I will prob have a major battle with SS so hope I can do it when I get back.

 

[the fairysolaris]

lots of friends and helpful advice here for when you get back.... but not now... you might explode in a sticky mess and fairy cleaned her glasses and pc today.... set yourself a deadline 3 hours short when you have to ...sounds crazy I know! but no time is going to be long enough for you to be good with "done all you can" ……...it WILL be difficult but if you can leave with a little time to sit in a park …. coffee in café even if its only an hour IT WILL BE WORTH TEN in value.... TRANSITION TIME to prepare your head to do whats next ( its what a carer need and never gets its gold-dust) for the stress of being torn ….. ooh no no fairy cant go there ( eye twitches and spots will be picked)………… panties! lets talk panties ! you packed enough panties yes and plastic baggies for the dirty ones.... phew that ok then..... ( fairy was on a rest type holiday once …...shuu it our secret right …… but I did a crazy to make feel better ….oh yes did giggles..... panties with Tuesday in pink ………. wore them on Wednesday too!!!!!....fairy such a rebel)
hugs
the fairy

 

[Norfolk Cherry]

Can I echo what @ANITRAM said, it exactly describes my experience. I was in touch with SS, and mum had the 4 visits a day in place, but the tipping point came when she tried to walk to my house and got lost, also was found sitting in her doorway at 9pm at night on a busy road. They will move your mum to a home when she fits the category of "At Risk". This may mean you have to withdraw your support enough to put her at risk. Mum is safe now, and I am safe! I've started a support group at her home and last night we took a couple of residents to the local panto, which they really enjoyed, so there is life beyond the care home, even though it doesn't look that way. Enjoy your holiday!

 

[Rosettastone57]

Can I echo what @ANITRAM said, it exactly describes my experience. I was in touch with SS, and mum had the 4 visits a day in place, but the tipping point came when she tried to walk to my house and got lost, also was found sitting in her doorway at 9pm at night on a busy road. They will move your mum to a home when she fits the category of "At Risk". This may mean you have to withdraw your support enough to put her at risk. Mum is safe now, and I am safe! I've started a support group at her home and last night we took a couple of residents to the local panto, which they really enjoyed, so there is life beyond the care home, even though it doesn't look that way. Enjoy your holiday!

When my mother-in-law went into full time care last year ,my husband and I found the dynamics of the relationship with her had changed. The relationship between her and my husband had always been poor,but we found we were suddenly no longer running around doing the care. Gone was the struggle to deal with one crisis after another. The weight of responsibility was lifted. My husband could visit as her son not the carer.

 

[ANITRAM]

Moving your loved one to a CH is not failure . Me and my FIL shared the care of my MIL for many years ( her son / my husband ) could not cope with the changes in his mother and often avoided contact . Although it’s still early days I feel the whole family ( including PWD) has benefitted as we are family again not just carers . My husband has re established a relationship with his mum ( in a way ) that seemed to have gone . At the CH he can spend time with her looking at photos knowing that when he leaves she is in good hands - instead of waiting for the phone call with details of the latest crisis .