thought i was prepared........i was not

[achilles]

just got back from 5 days of one of the most heartbreaking experiences of my life.
spent as much time as I could in hospital visiting my mum whos been dx with vascular dementia,did,nt really know what to expect but I suppose I had some kind of fantasy of what I thought it would be like....I think im still in some kind of shock..nothing prepared me for what I actually was presented with,the staff are fantastic,but mum is a handful, violent,agressive,angry crying,and this can all happen in the space of a few minutes or go on for an afternoon.
she,s in a hospital detained under the dolls system and has been there for the past 2, and a half months,my father who,s 88 and has been dealing with these effects for the past 18 months did,nt tell us,{he did,nt want to worry us}but in the end he could.nt hide it anymore its had a devastating effect on him,and still is,
I hope to be able to ask you all for advice on the journey ahead,my main and only priority is my mums best interests right now,i need to focus on that,and do the best I can for her......and dad....I have lots of questions and issues to do with care ,but this seems to be one issue at a time,so for now I wil just say hello,and read around the forum

 

[Canadian Joanne]

Hello Achilles,
Yes, the first couple of months were devastating for my sister and I so I know how you feel. Please read around the forum and feel free to ask any questions that you may have. There is a wealth of information here but more importantly, the members know exactly how you feel, as we are all in the same boat.

 

[jeany123]

Hello Achilles and welcome to Talking Point, I am sorry to hear about your mum it must have been such a shock for you,
There is always someone here who can answer your questions,

Best Wishes Jeany x

 

[ElizabethAnn]

Hello Achilles, nice to "meet" you - sorry you've had to find us :-(

I too am relatively knew to TP and I think your idea of introducing yourself and then reading around the forum posts is spot on.

The thing that I most noticed when I first realised that Mum had dementia, was that nearly everyone I told (irrespective of age etc.) seemed to know someone who has this awful disease.

It doesn't make the disease any less awful, but it does mean that there is a lot of experience out there for how to deal with things... much of it I've found on these forums...

Take care of yourself.

Elizabeth.

 

[jaymor]

Welcome Achilles.

You will find lots of help from the members of this forum. Take your time looking around and please come back and ask your questions. There is always someone around and there is lots of experience you can tap I to. It is a difficult time so take care,

Jay

 

[Wolfsgirl]

I know you must be feeling absolute grief about this and your poor little Dad coping alone.

Heart-breaking - hope you will feel supported here x

just got back from 5 days of one of the most heartbreaking experiences of my life.
spent as much time as I could in hospital visiting my mum whos been dx with vascular dementia,did,nt really know what to expect but I suppose I had some kind of fantasy of what I thought it would be like....I think im still in some kind of shock..nothing prepared me for what I actually was presented with,the staff are fantastic,but mum is a handful, violent,agressive,angry crying,and this can all happen in the space of a few minutes or go on for an afternoon.
she,s in a hospital detained under the dolls system and has been there for the past 2, and a half months,my father who,s 88 and has been dealing with these effects for the past 18 months did,nt tell us,{he did,nt want to worry us}but in the end he could.nt hide it anymore its had a devastating effect on him,and still is,
I hope to be able to ask you all for advice on the journey ahead,my main and only priority is my mums best interests right now,i need to focus on that,and do the best I can for her......and dad....I have lots of questions and issues to do with care ,but this seems to be one issue at a time,so for now I wil just say hello,and read around the forum

 

[achilles]

thankyou all

just wanted to thank everyone for your support,on the board and by PM
I,m trying to cram as much info as possible and have read around the board at lenth
I asked the hospital to do another assessment yesterday as mum did meet the criteria for NHS continual funding but then suddenly did not,this has really upset my dad who thinks they will take the house and he will have nowhere to go,thats not the case but he doesn't understand, and this in itself is almost bringing about another crisis
trying to get to grips with the terms MCAS DST ect ect but there is so much to learn and seems little time as they wish to move her at the end of the month,
I received a very kind reply yesterday from a member who summed up exactly what for me has been the hardest thing to accept....trying to reconcile the beautiful ,clever .funny proud woman,who I loved,with the woman I met last Thursday who I still love.
so thanks to everyone ,I have questions on practical matters and I will find the appropriate section of the website to ask them.

kind regards achilles

 

[rajahh]

Many of us think we are prepared only to find we are not.

I have been brought to despair and tears many times even though I anticipated each downturn.

This forum will be a great help to you

Jeannette

 

[bilslin]

Hi Achilles and welcome to TP. you've come to the right place for advice and support. Ah your poor dad what he must have been going through. Hope you get the help you all will need. lindaxx

 

[achilles]

take a breath

thanks for replys,thought I,d been doing quite well over the past few days but the pressure has just been building and building,
everything just rolling around my head..,reading incessantly,phoning,
thought it would be a good idea to drive down to work take my mind off things,almost had a crash.it was a shock....need to take a step back
i.m no good to anyone if I cant deal with this.and look after myself at the same time.
I have nothing but respect for the people on these boards who seem to be able to deal with all these different issues much better than I do

kind regards...and respect achilles

 

[2jays]

Take a step back. It's easy

During my carer breakdown, when I got help, I was told when ever anything feels like it's overwhelming me, I was to physically take a step back

I felt a right banana saying to them "it's too much" then putting one foot behind the other and taking a physical step back

But it worked

Took a while to stop physically taking a step back, and only take that step back in my mind.... but it still works

Today I needed to take that physical step back. It still works 2 years from when I was first helped.

Doesn't make any situation better. It does make dealing with any situation clearer.

xx






Sent from my iPhone using Talking Point

 

[achilles]

DING DING.....round 2

Thanks for all your advice,i have taken a step back...needed to.after reading around the forum I contacted the hospital to find out if my mum was entitled to nhs continual care funding ,mainly because my dad thought they would take the house and he would have nowhere to live.iv explained things to him now.
mum didn't score high enough on the DST.after seeing her over the five days I didn't quite understand that,so I asked if we could have another one,which they agreed, so i.m going back for five days to attend to my dad and hopefully attend this meeting,and others.i hope I will be allowed to ,as I still don't know who stood in as the MCAS on dads behalf at the previous DST
meanwhile there has been changes,another patient tried to put a hand on mum,she retaliated and broke her wrist ,was taken to the general hospital where she needed surgery and pins,she was then taken back to the unit and at some point the next day removed the pins herself.......I can't imagine how painful that must of been..,shes gone back today where they will attempt to re-pin.
so here I am at one in the morning writing this,trying to find a way forward,and be there for mum and dad in whatever way I can be.
but right now it just seems to be about putting one foot in front of the other.any skills I thought might be useful I cant at this time bring to bear,the situation changes so quickly and the nhs so complex that I seem to be fighting a kind of rearguard action
after reading many other threads on here I don't think I,m alone in this
I don't know if this makes any sense .but had to write it.

kind regards achilles

 

[supporter1]

So , so sorry to read what your family is going through right now sadly mirroing what we went through with my dad

I is totally exhausting , emotionally and physically ( I spent many hours driving back and forth to the hospital for 7 months ) so much so people started to ask if Iwas ok ( must ahve looked dreadful !).

Anyway .. just wanted to say that for us things ahve settled down, dad is safe and is in a wonderful residentail home . They understand him and care for him and I can finally relax and not spend my days in a state of constant angst .

Thought I would share so that you know that this is light at the end of the tunnel. It is a tough journey and I do not think anybody ever forgets ... it does leave an emotional scar but once your family member gets the support they need you get the opportunity to enjoy the little nice things with the person you love ( eg . I have just spoken with my dads care home on the phone, and they tel me he is fine , he is fast asleep in the chair only slight blip was that he came down stairs this morning with 2 odd shoes on and even he had a little laugh about things once they realised and helped him sort that out. It is about finding umour about the oddest things ). Little snipets like that make me smile and it also gives me a little insight into his life in the care home..

Anyway , look after yourself , remember there is light at the end of the tunnel although things are never perfect ( ie we do greive for the person we love and they are leaving us a bit at a time ) there are also good bits and you eventually look for those and start to see them a bit like my dad with odd shoes !

Do expect a bumpy ride as that is the reality, take care of things you can change and help with and learn to live with the horrible bits that we cannot ( expect times when that will make you feel really sad, unfortunately it goes with the territory). Personally I find times when I cope with it better than others ..

 

[cragmaid]

Hello....my word but you have all been in the wars. Poor Mum, she must be so confused and probably in pain too....but....and this bit is important....she is OK. She is in hospital, and yes I know thats where she got hurt, but she is being watched and given pain relief and she will recover from the broken arm in time.
With regard to the Vas Dem, she perhaps has had an infection prior to her admittance which had caused the crisis, again that will be investigated, and whilst at the moment there is no medication to help, there are meds to help to prevent the hallucinations or the depression which can plague a Dementia patient.

Now that she is in the "system", she and Dad will be assessed to see what care plans can be put into place, whether they can manage at home with carers ( once this crisis is passed),or if residential care is needed will it be EMI or residential. Perhaps it might be the case that joint care could be sought....All of these things will be investigated.

Now with regards to the costs of care. A financial assessment will be taken but Dad will not be made homeless.
Usually what happens is that when a spouse is remaining in the house, it is counted financially as an asset, but it cannot be sold while he still lives there.

All of these things will be looked at in time, but for now you can ease off on the panic, Mum is being cared for, Dad is safe and you will get to know a lot more than you do now, but over time. You don't have to find out about everything today.

You know, most of us have taken weeks months or even years learning about Dementia and all it's phases and types, and just when you think you've cracked it....smack....it clouts you again with something different. Give yourself time to assimilate things and if you need time to think things over, make sure that you get that time by saying NO to having to make decisions overnight.

Take care of you first, because you have to be fit in order to help others.

 

[garnuft]

You know it's an horrific thing to contemplate? Your Mum, breaking her wrist, having pins put in and removing them?

Did you ever think you would have this conversation?

It's an horrific thing to contemplate, let alone live with.

Strength and courage as knowledge makes it's mark.

Sympathy and empathy too.

It's OK to cry, it's Ok to not know everything, it's OK to be angry.

But have faith in the system, learn how to poke it into action but have faith. I know there are lots of stories of how it doesn't work but I think that's because people want a magic wand or a caring Fairy.

In truth you need neither, just find a way to chart the system, it will never be ideal but that thought disappeared when Dementia reared it's head.
Best wishes.

 

[achilles]

thanks to everyone who have replied,i read everything...more than once. The info on the forum about the DST and the framework agreement have been excellent,armed with this I went back to attend the DST for mum.
somehow the meeting was cancelled until the next day,,i hadn't seen mum yet...but could hear her...I knew about the broken wrist and pins ect,however she was now in restraints and was receiving injections of lorazepam to calm her,they let me see mum but it was very difficult, I couldn't be sure that my presence was not causing more upset so I left,the next day I came back for the meeting,straight away I was asked into a side room ,the staff nurse explained the DST was not happening because there's been a marked deterioration in mums behaviour,there would still be a meeting but it was to detain under section 3 MHA,they said I could attend if I wished so I said yes.
after being with mum for some time I could see they were right to ask for this.
in one moment she managed to grab my glasses ,throw her food across the ward get her hand on me and break one on my front teeth,i used to watch bruce lee do this kind of stuff when I was a kid and thought it was great......now not so much.
this may be temporary of course but we are somewhere different now even from a couple of weeks ago.her arm must be very painful also.
for me one of the hardest things right now are the things she says.i know everybody says they don't know what they are saying and they don't mean it,and I know that's true
but.....its hard to hear....and it never stops,on Tuesday as she was giving me the Vickers and telling me to f off...I had to laugh ....from across the ward it just seemed like some horrible joke...but today after I dropped off some clothes it was incredibly vicious .I cant even write it... and maybe I shouldn't.
I really hope i.v got what it takes to be there for mum ,its exhausting on almost every level and its kicking the stuffing out of me.

kind regards achilles

 

[Lindy50]

Hi achilles

Oh, my goodness you have had a terrible time I just wanted to send you my sympathy and good wishes. At least your mum is 'in the right place', where she will be assessed and treated and plans can be made, all in due course, for her future care

As for you, your poor tooth, but more importantly, your poor emotions ....they must be all over the place. You must take care, as others have said (and by the way, I have had a couple of 'near misses' myself driving to and from mum's this week )

Wishing you all the best

Lindy xxx

 

[lizzybean]

Just caught up with this thread, my but you've all been thru the wars. Everybody has given you very good advice (some brought a tear to my eye-garnuft!) I just wanted to add my sympathy that you have to be on this horrendous dementia journey.

Hope everything gets sorted sooner rather than later.

 

[achilles]

things that are said.....things that are not

thought I might post an update,mums had her pins out now at hospital,in the past 5 days she,s had at least 6 different casts on because she tears them off and removes the pins,shes had a fall ,and was taken to hospital for that also.i wasn't allowed to see her last Monday another ambulance was called because of chest pains,on the strength of the posts on here I asked for a new DST..which I attended last wednesday.that then turned into me being present when mum was in fact sectioned under MHA 3,
I completely underestimated what that process would be like,im lucky in some ways because of my own experience I can employ strategies to help deal with some of the more practical steps required to help make mum more comfortable.not perfect but its something...
the day after she attacked me and on the advice of staff} I bought mum some new cloths in,she was in a lot of pain,and very angry and upset with everyone,but especially me..
things were said.....hard to hear...not the normal f-off,your a b...tard........other stuff even the nurses who were stood with me could do no more then hang their heads and walk away...except one...I left later and two of the nurses came out with me and asked if I was alright...I brushed it aside....but I was,nt..this is the area I,m struggling with...this is the hardest for me....on the advice of a member I,v decided to write about it,its no good me coming on here and writing about how well im doing...this is happening now...this is real...and its painful for all concerned
I want to thank all who have supported me in replys or just reading..but particularly joanne,who has showed me nothing but kindness.

I'm learning to endure


kind regards achilles

 

[Jessbow]

Keep talking, off load as often as you like, it does help.

You are having a real pig of a time, I feel for you.