You can tell I'm exhausted.. I can't even spell lawyer!

[Exhausted Lawye]

Hi to everyone out there on this forum.

My Dad has vascular dementia, vascular Parkinson's disease and advanced prostate cancer. We lost Mum to cancer in 2005. Dad wasn't too bad initially but over the pays year or so his condition has deteriorated such that in March of this year, my partner and I moved in with him. The idea was to provide support and to keep him safe, living independently at home for as long as possible. However since we've moved in, I've been shocked at how poor Dads health is .... Or is it that he's becoming lazy and just relying on us?

By way of background my partner was involved in a serious road traffic accident three years ago. He underwent major spinal surgery which has left him with a chronic open wound in his back. In May of this year he suffered a breakdown and tried to kill himself by getting drunk and crashing his car into a lamppost. As a result he's now been banned from driving and his employers are considering whether they can redeploy him, although he's been unable to work since his accident.

I work full time as a litigation lawyer. My partner is at home all day. My job is stressful, worrying about my partner is stressful and I also have Dad to worry about. It's exhausting! I dread going home as I never know what mood my partners going to be in or how coherent Dad will be.

I was always a Daddy's girl. He'd do anything for me and vice verse. Sadly the person I now see isn't my Dad. This disease has robbed him of his personality, his confidence and everything he used to be.

He wants me with him all the time. We don't get a break and when we do go out without him, he shouts and swears at me which is obviously really upsetting and spoils the night for me.

He demands that things are done immediately and shouts if they're not. He doesn't (or is unable to) follow simple instructions. He doesn't say please or thank you.

It's a thankless task and on bad days I really do resent him but then I feel guilty as I know it's not his fault. I've been told to live my life as well as I'll be no use to Dad if I'm poorly. But that's easier said than done isn't it? Faced with a barrage of abuse for wanting my own space, it's much easier just to give in.

As a result of my partners breakdown and Dads illness I recently had three weeks off work due to depression. I was back at work for a week and was then admitted to hospital with kidney stones. And who did I worry about during that time? Not me that's for sure!

I need to get Dad into some kind of day care centre, just once or twice a week and hopefully also get some form of weekend respite care just so that I can recharge my batteries. I've been waiting for social services and his CPN to get some information to me .... But still I wait.

Any advice or tips would be most appreciated....

Thanks

 

[loveahug]

A wam welcome to TP, lot's of experience on here, but I'm going to chuck in my penn'orth anyway then hope a lot of wiser folk will add theirs.

Really don't know where to start, jeez you must have the biggest heart in the world to support your partner and your father. Practicalities first, have you applied for council tax discount (severe mental impairment) and also attendance allowance? That will provide a bit more income to pay for some help. Then you are going to have to grow a very big pair of cojones and refuse to be bullied or browbeaten into being the sole carer. No discussions or arguments, just put your foot down, say this is how it is, get in carer visits to provide help and support for the men in your life. Contact the local AgeUK and Alzheimer's offices and check out the internet for memory cafe's, lunch clubs and day centres. Leicester is well provided but you have to work hard at getting it all in place.

I'm sorry if this comes across as bullying but if you have a total health or mental breakdown they are both going to be in a bit of a mess without you, which the stay in hospital probably proved. To be honest, you are the most important person in all of this so you have to control the agenda.

Keep posting, asking questions, gaining knowledge, come here for a rant if need be. And PM me if you could cope with a visit, next time I'm at mum's....

BIG BIG HUGS x

 

[marionq]

All good advice. You need someone doing the housework and someone taking Dad to day care. Get onto social services - start with an email describing his behaviour and needs and outlining your own health. Point out your responsibilities and that you cannot continue at this level. Lay it on the line firmly. If you don't hear back within the week - get on the phone and make a fuss.

 

[2jays]

The squeaky wheel gets attention. So keep squeaking. If they say they are going to ring back that day, don't necessarily hold your breath... If the don't ring back, ring again the next day.

I have had experience of Leicestershire social services through knowing someone who needed their support.

I am negatively biased, so best if I say nothing except be aware of all the "rules" so you can challenge anything that needs challenging with your knowledge.

CRAG
https://www.gov.uk/government/publications/charging-for-residential-accommodation-guide-crag-2011

Leicestershire area of Alzheimer's support
http://www.alzheimers.org.uk/site/custom_scripts/branch.php?area=true&areaCode=EAEM

AgeUk Leicestershire
http://www.ageuk.org.uk/leics/

Carers support
http://www.claspthecarerscentre.org.uk

My heart goes out to you. So much for you to have to deal with. Sorry I seem to have given you more to think about xx





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[Exhausted Lawye]

Thank you...

Thank you so much for your advice. It really does help (and it made me cry!)

Dad does have a carer in the morning and at lunch time but they only spend 15 minutes helping him get up and make his lunch.

After reading some of the stories on here I have to say that I think I have it easy! At least Dad has some good days and I can have some sort of conversation with him. It doesn't seem like lots of people on here have that privilege.

I will look at the links provided and certainly follow advice though and I will let you know how I get on.

Thanks again

 

[AlsoConfused]

Very many TP posters are carers for dementia sufferers, then on top of that they're supporting partners or children with abnormally high needs for care ... and then on top of that, they've serious health worries of their own. The wonder is how you and other TP posters manage to keep going for as long as you do.

I'm with everyone else ... lighten your load and spread it please!

 

[CJW]

I am full of admiration that you are still standing, but you must put yourself first if you want to carry on being there for the men in your life. If I were you I would work out exactly what you need to minimise your stress and give you some time for yourself. Have you spoken to your GP? I went through a very difficult period with mum and could see I wasnt going to cope much longer. The problems were never ending and I got to the stage when they were all I could think of. A course of happy pills, 6 months, saw me through and kept me functionning and I am now off them and coping well although things are still tricky. Good luck and take great care of yourself...

 

[Exhausted Lawye]

I am full of admiration that you are still standing, but you must put yourself first if you want to carry on being there for the men in your life. If I were you I would work out exactly what you need to minimise your stress and give you some time for yourself. Have you spoken to your GP? I went through a very difficult period with mum and could see I wasnt going to cope much longer. The problems were never ending and I got to the stage when they were all I could think of. A course of happy pills, 6 months, saw me through and kept me functionning and I am now off them and coping well although things are still tricky. Good luck and take great care of yourself...

I know all that you say is true. The problem is I've already been to my GP and I'm already on happy pills (I just love that term!) and I'm still struggling.

What's made it all a million times worse today is that my daughter has called me to say she's been to see her grandad (my Dad) whilst I was at work and he's broken down, saying that he's not happy, that he wants to live on his own, that he doesn't want my friends or my partner's family to visit and he doesn't want my partner's son to stay over (once a week!)

This has put me in an impossible position. I've bought Dad's house so that I could raise the funds to have a loft conversion so that we could move in and help him. My whole life has been placed on hold. I have no independence, no "me time" and I am just managing to hang onto my relationship. After all that sacrifice he's still not happy. I know for certain that if I hadn't have done what I've done, then he would have been in a home by now. Absolutely no doubt about it.

What the hell do I do?! Do I ask my partner to move out and just live with my Dad, with no friends visiting? Do I ignore what Dad's told my daughter (she's told me in confidence) and carry on in the hope he'll get used to it? Do I stop my partner's son and his family and my friends visiting in the hope that makes things easier for Dad?

Trapped between a rock and a hard place is not the word!!!!

 

[Tin]

Don't change anything, just stick it out, I'm sure its just a massive adjustment for your father,I went through similar with my mother when she moved in with me. Although she said nothing to me, she kept complaining to my brother about me and my friends always in her house and how lonely she was! having this little nugget of information was very useful. I arranged for friends to come round at certain times and involved mum in the organisation before their visit, it worked, all my friends are now her friends and they don't come to see me, they come to see her!!! At least that's what mum thinks.

 

[Exhausted Lawye]

A wam welcome to TP, lot's of experience on here, but I'm going to chuck in my penn'orth anyway then hope a lot of wiser folk will add theirs.

Really don't know where to start, jeez you must have the biggest heart in the world to support your partner and your father. Practicalities first, have you applied for council tax discount (severe mental impairment) and also attendance allowance? That will provide a bit more income to pay for some help. Then you are going to have to grow a very big pair of cojones and refuse to be bullied or browbeaten into being the sole carer. No discussions or arguments, just put your foot down, say this is how it is, get in carer visits to provide help and support for the men in your life. Contact the local AgeUK and Alzheimer's offices and check out the internet for memory cafe's, lunch clubs and day centres. Leicester is well provided but you have to work hard at getting it all in place.

I'm sorry if this comes across as bullying but if you have a total health or mental breakdown they are both going to be in a bit of a mess without you, which the stay in hospital probably proved. To be honest, you are the most important person in all of this so you have to control the agenda.

Keep posting, asking questions, gaining knowledge, come here for a rant if need be. And PM me if you could cope with a visit, next time I'm at mum's....

BIG BIG HUGS x

Thank you

Dad does get attendance allowance but I didn't realise we may be entitled to council tax benefit. I'll definitely look into that.

It's the constant guilt I can't cope with. Wanting my own life and then feeling guilty as Dad doesn't have that luxury. I'm in tears almost all the time. It's not a professional look for a lawyer I can assure you!

Your advice has not been taken as bullying. I do appreciate each and every bit of advice I can get. I feel like I've done the completely wrong thing by moving in with Dad, but it's too late now. So any advice I can get from those "experienced" amongst you, would be most appreciated!

A coffee somewhere when you're next in Leicester would be brilliant

 

[carer21]

Just a thought......you should qualify for Carers allowance too if you spend minimum 35 hours a week caring. You can use the money for anything to help YOU. You can apply online at gov.ukTaxable but I keep mine for treats just for me and that important me time. Also Carers one off payment available try Carers uk website for info. . I needed to contact adult social care to ask for a Carers assessment which in my case took 10 minutes over the phone and they were able to help. And then there's crossroads or other charities who provide respite sits at home if that's any help. Usually 3 hours and in some areas charity may offer free sits once a week. I spent a while just trawling the net for things in our area and found it very useful. I found I had to be quite pro active for a while accessing what I wanted ( not easy when you're thing to juggle demands of life!) but great when you find something or someone who'll help. And a strange sense of achievement and my head came above water briefly!! Sorry seemed to ramble but hope may help. Thinking of you. Keep looking on here it's brill for ideas