I'm 25yo girl taking full-time care of my gran w/ Dementia

[warydistantsong]

I'll try my best to keep this short. I moved from America (where I grew up) back to England (where I'm from) to take care of my Gran. I'm basically in a foreign country since I havent been back here since I was a kid. I sold all my things, left my friends and quit my job in order to do this. Before I came however, her condition was severely under-explained to me. (I have taken care of a early-moderate stage Alzheimer's relative before as a live-in) They described her as self-sufficient and just in need of some company. Now that I'm here i've realized that she shouldn't have been living on her own for years. She is 89 and in the last stages of dementia and completely dependent on me. (She can't get to the bathroom in time without aid, can't eat or drink on her own, can't sleep if not prompted etc.) My family have their heads so far in the sand that i'm wondering what the other side of the world must look like. They are absolutely, totally unsupportive. When I try to tell them about how hard it is they make fun of me and gossip about how I can't handle it behind my back. If I try and tell them about how far her condition has progressed they think I'm just making it up. My gran got scared and didn't recognize me and tried to hit me. I got really upset and when I told my family they called me a liar and then said that I must've done something to her to make her do that.

I just feel so completely, and utterly alone. I just want to burst into tears all the time Everyone I try and talk to doesn't understand or doesn't want to hear it. The thing that helps the most is talking out loud about my problems, bottling it up is real affecting me. Which wouldn't be so bad if I knew where to go to get help and resources etc.
I don't even know where to start looking for support help so if anyone could tell me any little bit at all I would be so grateful.

 

[jenniferpa]

Hi there. And welcome to Talking Point.

It does rather sound as if you have been dumped in it.

OK - you may be a foreigner (hey, I'm English by birth but have lived the last 31 years in the US) but your grandmother is a UK citizen and eligible for assorted services from the local authority. So have you contacted them? You should call them and ask for a care assessment for both your grandmother and (possibly) yourself - although the latter will depend on how long you have been in the UK. But you need to know, you don't have to stay there. In the UK, no adult has to care for another adult (legally) and it sounds to me as if your family are taking advantage of you. Please post again, or feel free to PM me: I'd be happy to help because, as I say, it sounds to me as if you are being taken advantage of.

 

[lin1]

Hi, Welcome from me .Sorry you have had to find us .
I agree with Jennifer , it seems to me you are being taken advantage of.This illness is hard enough without being belittled or ignored by family.

TP , talking point, Is not only a good place to come for info and cyber support, it is a good place to come and offload too .

Some help is out there, unfortunately it doesn't come knocking on the door ansd sadly often has to be chased

As Jennifer has said contact your local council and ask for Adult social services , the numbers should be in the phone book.
Your Gran is entitled to an assessment of her needs , if you have been in the uk long enough you will be too, you may also be allowed to claim Carers allowance, providing Gran is on one of the qualifying benefits such as Attendance Allowance , their are others and you are available to help gran for a minimum of 35 hrs per week and earn under £100 per week, I am not sure how long you have to be in the uk before you can claim anything like this.

TBH I found these charities very helpful . The first two mentioned , know what is available in the area , can help with benefits check, help in form filling and more

Age uk formally age concern
http://www.ageuk.org.uk/

Alzheimers Society National helpline and a few other things
http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline


See if Crossroads care is in your area, they provide trained paid carers to give carers a bit of a break for a few hours
the two mentioned above will know if they are in your area and how to contact them.

We also have an organisation called Admiral Nurses. they are specialist dementia nurses who provide info and support, they are not hands on nurses, sadly they are few and far between , they do have a national helpline

http://www.dementiauk.org/information-support/admiral-nursing-direct/

Please feel free to ask questions, we will do our best to help

 

[janey106]

Hi, I hope you find this site as helpful and supportive as I have.

I would agree with previous posts about ensuring GP, Adult Social Care, Carer's Resource and local Dementia/ Alzheimers resources all being contacted for yourself and Grandparent. I started to keep a diary of 'behaviours/problems/changes' as there have been times I have doubted myself, could not hold on to the bigger picture because each day brings new challenges. If other family doubt you, could you print off some of the literature on the Internet to highlight how far the difficulties are progressing and how this impacts on their family member as well as you as carer?

So hard isn't it .... And we aren't even at this stage yet. My daughter is your age and she keeps telling me to Just breathe Mum, we can only do our best.

Thinking of you and sending <<<<hug>>>>, you're not alone

 

[Chemmy]

Oh, I get incensed when I read posts like this (and you're not the first grandchild on TP in this situation). How DARE your family treat you like this? Are you being paid, because, sure as eggs is eggs, they wouldn't deal with a professional live-in carer in this way.

The others are right; call in social services so that your grandmother is on their radar and be prepared to walk away.

 

[Tin]

Wow I'm 60 and can barely cope, well done for getting this far. If you want to continue looking after your grandmother everyone here is right, you need to get help and get keyed up on what you and your grandmother are entitled to, I take it you are responsible for everything, paperwork etc as well as all the day to day care.

I really do think that you need to confide in someone who can take you step by step through it all. Do you know of the Citizens Advice Bureau [CAB]? another 'agency' for you to try and make contact with. If you insist, you can arrange for one of their advisors to visit you in your home and they will, like AgeUK, guide you through all the paperwork.

Think of tp as your new family, all are here to help.

 

[Lisa74]

Hi Wary,

I'm 26 and have been living with and caring for my Granny who has late-stage Vascular dementia for 2.5 years. It is horrifically challenging and it's not something that anyone can cope well with- the agitation, outbursts and constant questions, the night-time wakefulness and continence issues... they are too much for most people, even more so when you live with the sufferer and have very little time for yourself.

I'm so sorry your family are being so blind and so rude to you.

I wonder if it would be best for you to move out again so that social services have to step in? They can provide care provided she either has very little money or can sell her house to cover her care. If you are determined to stay and care for her then make sure that she is getting Attendance Allowance, which might enable you to pay for half a day of Day-care each week.

Although it is heroic to move to the UK to care for your Gran, you do need to think about yourself and your own life and factor this into the equation in whatever way you can

 

[warydistantsong]

Thank you all for your response. <3

I just cried tears of happiness, your responses overwhelmed me a bit

I'll try to reply to all your suggestions
I'm facing a lot of issues (as well as emotional ones) in getting the help I need. For starters I don't even know what a council is lol. In america there isn't any kind of gov help for these sort of problems, so I don't know what I'm looking for exactly or where to look. I live in Manchester if that helps.

Due to a small novels worth of bad luck events I was last living with my folks for awhile and they made it clear that I would not have a place to return to 'since I should be living on my own blah'. So bailing isn't an option, even if I wanted too. The reason I'm taking care of her is because they weren't and my mother (who is back in america with my dad) is unable to get here until May.

I'm afraid my family are familiar with dementia and Alzheimer's, but don't seem to accept that my grandmother has become 100% dependent, because (and I quote) "She's been living this long without you she can do it again." Basically they have no intention of getting her more help. The point of me being here apparently was so they wouldn't have to pay for nurses/carers anymore, as soon as I got here the cancelled all the afternoon/evening help. But to be honest those carers only came in for five mintues threw a sandwich at my gran and left so they were a waste of money. my gran looked absolutely awful when I first arrived, she refused to eat, couldn't walk she was sleeping eating and living in her chair. (She can walk round now tho!) but they don't want to go to a different company to get more help. I still get a morning one who is the best, honestly, but 'I need to watch her to make sure she's doing it right' *eyeroll* so I never get any sleep.

Gran is not expected to make it until next Christmas, and it would just destroy her to move into home, she still retains that she's home most days if not anything else. (she's lived here since before I was born) Its also a rented flat so i've got no option of selling.

The thing is I've got no money either. They only just found my old NINo today. They (family) were supposed to be paying me but until this week they had only given about 120 quid for the first two months i was here... They started complaining about the one day a week they had to pick me up for groceries so I asked them to just give me the food money, so for the first time they actually gave me 100, but I spent already on everything that we need. (The house is rundown and old and she's a hoarder. So everything is dirty and covered in dust which they also blame on me now.....)
Unfortunately I have no access to her paperwork because her son took power of attorney (or whatever is called when you take charge of someone). I have the misfortune of looking 10 years younger than I am, which I can assure you is not fun. Everyone always goes on about how lucky I am. I would like to slap the hell out them all... Because since I look like a teenager I get treated like a teenager, i'm also 5'1 which doesn't help. And that's how he sees me. He has tried his best to take care of gran, unlike everyone else. but hes in his late sixties himself and still works a full-time job and he just doesn't get. Or doesn't want to get it because then he'll have to accept that my gran, his mother will die before the years out. WHen he comes round he only spends an hour or two doesn't see what she's like 24/7. Also if I go against him or do something he doesn't agree with he has the power (and the temper) to throw me out of my grandmothers house.

It feels like I'm walking ontop of eggshells that are hats for grenades...

But thank you for all your responses, really. I wish I could've got back sooner on here but I'm sure you can imagine I don't have a lot of computer time since my tablet broke.

 

[Kevinl]

Hi Wary
I read your first post and didn't say anything, it read like something out of a Dickens novel or a fairy story (that is not to say I don't believe what you said in any way) it is that I can't believe it's happening probably less than 5 miles from where I live is what really brought it home to me.
It's like some modern day Cinderella story in a country where there is so much free help available if only you know how to access it and you can if you know where to start.
For clarification (but only if you want) it would help if you could specify where in "Manchester" Greater Manchester includes 10 separate authorities Bolton, Bury, Rochdale, Tameside, Trafford, Salford etc... all are separate entities when it comes to NHS and social services the local authorities name might help you get the best contact information.
Just sooo wrong what's happening to you, take care (((virtual hug)))
K

 

[Chrismitch]

Hi Wary
So sorry to hear that you're having such a hard time. Hope you find help soon. There seem to be some American expat groups in Manchester. They often visit people who are new in town. It would probably be good for you to hear a friendly American voice.
Good luck.

 

[Chemmy]

Hello again.

You say bailing out isn't an option. What do you think you will do if your grandmother doesn't make it past Christmas? Will the family support you until you find your feet again, either here or back in the States?

Sorry if that sound callous, but I do feel that you really need to make plans to safeguard your own future as well as your grans whilst you have a roof over your head.

 

[Tin]

Sounds like you have been well and truly dumped on, and sorry to say seems like the rest of the family are not interested in improving your grandmothers final years. You say there is still a carer in place, then there must be somewhere in the house a folder containing details of the agency/local authority, if you can't find this then ask the carer where it is, the very least the carer will be able to tell you the name of the local authority. Once you have the telephone number you should be able to find out if your grandmother has a social worker. Do you have permission to talk to her gp, or at least permission to make appointments for her. Don't be afraid to ask her gp for help. Don't honestly know where to start with the payments you are receiving, but you are being employed as a residential carer for your grandmother and you do have rights, the very least is to expect a salary being paid to you on time. I urge you to contact CAB, if you can find the time, I know how hard it is and how caring can take up all your time, I keep putting things off with officials. I can rarely make a phone call without my mum asking me questions, sometimes this works in my favour because they usually say to me ' I can hear that its difficult for you, would you like to arrange a home visit?' and I jump on that, because face to face is so much better.

I get that you have a battle to fight with the rest of the family and you probably find for everything you do its one step forward two steps back.

If all else fails, keep posting here for advice or just a rant and a moan about the rest of your family!

 

[Lisa74]

Wow, your family are being jerks for stopping all the support your Gran was getting! Is your Gran your mum's mother or your dad's? It's amazing how little some people care about their own parents.

Has your Gran been given a terminal diagnosis or some sort? Or is her dementia caused by Alzheimer's? It's just that even with very late stage Vascular dementia (mutism, constant wandering/staring expression etc.) sufferers can sometimes live for years but if she has late stage Alzheimer's then I think things might progress more quickly.

It's great that your Gran is up and walking again. I'm sure you can make a big positive difference in her life- my Gran seems to do better the more effort I put in and became much worse when I spent 3 months in hospital last year. I know I don't know you but I am a little concerned for you and about the situation.

Someone else said that there's so much support in this country and to be honest that's not the case for a lot of families (like mine, where the government will provide minimal support and we don't have any money to pay for it) but if your Gran already had support in place it is just awful for your family to stop it, unless they can't afford it.

I hope today is going okay or is at least bearable! Does your Gran sleep through the night? Do you get any time to yourself?

 

[ancient&modern]

if she likes walking, could you make an appt and walk her round to GP; this would help you also, to explain situation to someone who could point you to local sources of support.
good luck

 

[njc]

I found myself in a similar situation when I was 35 and also a foreigner in the UK, your grandma is more than likely self funding and her children hope to inherit as much as possible, you are the mechanism they will use to maximise their inheritance. I spent 13 years providing free round the clock care to a friend who had ample resources to pay for her own care, eventually she had a stroke and now she is in a care home, if I had known how easily she would settle into a CH years ago I would have sorted out this mess then. My advise to you is to contact the Alzheimer's society and they will send someone round to you to help you understand all of your options, you will have to put yourself first.

 

[clojh21]

local office

Hi,

Contact your local alzheimer's society office which can be found on the website, also you can call the National dementia helpline on 0300 222 1122 to talk things through with them. Also look for organisations such as carer's resource or equivalent in manchester.

Hope things become a bit smoother for you all.