Anyone care for (live in) someone with dementia?

[looneytune]

Hi

Just noticed this new section.

My parents live with my nan who has dementia and have done for some time. It's always very hard for them, I've seen it for myself and don't know how they cope. BUT, my mum is getting really low with it all now and I'm worried about her (and my dad). Especially at the moment as my dad is in hospital recovering from an op and waiting for more results about that too.

I'm always talking about how fab MN is and I just wondered if anyone else has to live with this day to day IN CASE she agrees to come on here for support, moans about her days etc. I feel she needs someone to talk to as she doesn't moan to my dad about it (it's his mum) yet she does most of the caring!

That's it really, just want to help my mum

I used to work with elderly people with dementia in different stages and it was mentally draining most days for me and terribly saddening.
The difference is I could go home and switch off from it. Your parents are having to watch and care for people they love and unfortunately its a disease that gets worse.
My friend cared for her nanna and experienced terrible lows, felt sometimes that she was burdened, then felt guilty that she could feel like that, felt helpless, useless, trapped and unable to grieve for the person (in a sense) because she couldn't have moments to herself to think or come to terms with the situation.
She described it as literally living on the edge second by second and she was physically drained. Especially because her nan became less recognisable and began to have mood swings, and therefore seemed thankless.
I don't know if your mom and dad are able to put your nan into some kind of respite care to give them a break - week to a couple of weeks, or if they have looked into having some kind of paid home help (finances pending) so that the hardest parts of the day are taken care of by someone else. That way, they might be able to life their spirits by doing other things.
Assure your mom that she is wonderful, try to give her something to look forward to that is important but separate from caring for your nan and now, your dad's recouperation too.
Perhaps even an afternoon of pampering whilst there is some home help will relax her. She has a right to moan and feel down, what she is doing is selfless and courageous. I really respect carers.

Thanks for that post. My parents do put nan into respite every Tuesday and something like a week every 6/8 weeks, something like that. It's still extremely draining though. The constant asking the same question over and over again, the moany noises she makes all day like 'ooo, arrr' and it grates on them. Mum can't even go to the toilet without being greeted by nan when she opens the door. It's like she has another shadow, she follows my mum EVERYWHERE and my mum is suffocating It starts from the second my mum gets up. She's groggy, just woken up, opens the bedroom door and bang, she's in your face that second.

They both end up snapping at my nan a lot which may sound cruel but I just don't think they can help it anymore, the stress has really go to them.

It's harder because health wise she's fine but what kind of life is this for my nan??? She gets confused with who people are and that frustrates my nan when she realises after. She was always very on the ball and ran her own business, a very independent woman but now she's so very needy.

She was in full time care at one point when they first realised what she had but finances couldn't keep up with that so they have no choice but to have her at home.

I live 4 hrs drive away too so not much help

I'm so sorry looneytune. My dad has dementia- he's not bad at the moment, and he lives with my mum rather than me, but I can just imagine what it's like. I think if your mum can handle it she might be best off on the discussion boards of somewhere like the Alzheimer's society, not because MN isn't lovely, but just because she would find more people in the same situation.

Agree with Tamum about another forum. It's a pretty specialised area.

My dad had dementia (he died recently of cancer) and my mum was his carer. He had started to reach the stage you describe in some ways I think. My mum had a small heart attack a few years ago and I went up to look after him (there wasn't much I needed to do, just make sure he took his tablets and fed him) but it is wearing sometimes just having the same conversation, over and over again, let alone what your mum has to deal with.

I am alarmed about what you say about the residential care. Surely they would take your nan's money and then the government pay? I looked into this recently as my mum would have been unable to have my dad home if he was going to get out of hospital (not just due to the dementia, things to do with the cancer had developed) - they can't take your mum and dad's home or money, I'm sure.... can they?

The alsheimers soc can also put her in contact with people in her area who are in the same boat.

Is your family getting the support that they need......does your gran have a social worker? Good ones are worth their weight in gold and can help to organise all sorts of care, people to drop in and help out, day units that can do things for your gran (like occupational therapy which will help her) as well as giving your parents much needed respite.

It is also worth having a social worker as they can explore the nursing home options that might be needed as your grand condition progresses.

(my mum has dementia and has been in a psychiatric unit for 5 years now)

Oh yes, I forgot about the Social Workers. My dad's was lovely and very proactive.

Tamum - thanks, I'll see if she will go on the other discussion boards. Atm, I'm not sure if she'll go on any but once dad is out of hospital and (hopefully) ok again, she might

Winestein - so sorry about your dad As for the financial side of a home, tbh I'm not 100% sure of the details, I just know that 'money' is one reason why she's still with them but not sure what that means? Will check though.

Martianbishop - I'm sure there must be a social worker but don't hear it mentioned, will check! I know that they booked a days respite to fit in with dad's operation but then he got really bad the day before and had to be rushed in and has ended up staying longer but the day care centre couldn't take her to relieve pressure from my mum. She was booked in for Wed for a week and the best they could do was bring it forward to tomorrow (but the good thing is it's for the week plus the extra few days). I'll ask mum if she has a social worker, couldn't they have helped!

I suppose they already know a lot as are always surfing the net for info. I just feel bad that I can't help with the day to day side of things and just thought mum could do with somewhere she could moan about it all as she doesn't like to moan to my dad.

Thanks for all your messages

Here's the one I was thinking of, though they've probably already seen it. Good luck

Thanks, will check it out

Hi just noticed this discussion thread.
I'm not a carer myself but my dad is and he is looking after my mum.
She does not have Altseimers as such, to be frank, the doctors don't know whats wrong with her.
They have tried to get her to have a scan but she just panicks and refuses to co-operate.
She has been in and out of hospital with full blown manic episodes since 2002 and she has suffered from manic depression all her life.
But now the doctors say they have treated her mania but she has come back as a stranger.
She spends all her time sitting in a chair downstairs with the TV AND radio blaring and every 5 mins on the dot she will go upstairs and say she is having a nap and then come back downstairs 5 mins later saying she can't sleep.
This goes on for hours and even for 24hrs at a time.
She only actually sleeps when she is exghausted. She has to have an injection every week just to keep her calm. Don't know what they give her though.
As you can imagine my dad is very down with all this but she can be quite violent as well and sometimes screams an screams that she's dying and wants my dad to check she is breathing.
You can't get anything co-herent out of her and she asks questions over and over again and they say that she does not have dementia
So what is it then??
My mum is only 63 yrs old this June and she has only seen her grandchildren rarely as she frightens them.
AB

I'm doing an excellent course for Carers just now through Carers Leeds - click on the main site to find your local group. Really, really worth getting in contact with them.

Rather bizarrely, I was also booked on a course at the same time with the Expert Patient Programme - I've deferred this until later in the year, but it also looked pretty good.

There is a lot of help out there, but it is frustratingly difficult to find.

Ripeberry, that sounds very very hard on your Dad. How does he cope?

Winestein, My dad works from home so he just shuts himself in his office or he just works through the night when she finally goes to sleep.
Problem is, my dad won't accept any help from outside agencies as he does not want intefering people nosing around his affairs
(his words) not mine.
I live over 2hrs away so it is not possible for me to "pop" over as i have one DD1 at school and she is 4yrs old and DD2 who is only 2yrs old.
My brother lives only 10 mins walk away from them but he is a lazy so and so and has been on the dole for the last 15yrs.
Sometimes i feel like just cutting off from my familly and concentrating on my new young familly.
AB

Ripeberry
There's really not much I can say - your situation sounds dreadful. I can imagine it is emotionally hard on you too and can see why you would say sometimes you just want to cut them out.

Ripeberry, I wonder if they could ask for a referral to someone else? It sounds a bit like Lewy Body dementia, which is what my father has. That is characterised by sleep disturbances. It's just that if it is that, then drugs like Aricept have been shown to work really well, so it would be worth knowing. How awful though, I'm so sorry.

Looneytunes - re: the money thing. At the moment my grandmother lives on her own, with dementia. She is visited 3 times a day by carers provided through a local authority paid agency. She owns her own house, fully.

It is looking increasingly likely that she will have to go into a home soon. Her dementia has overtaken to a certain extent the level of care.

She can't move in with my mother - my mother would not be able to cope and her house (2 hours from granny's) is not suitable for someone unable to climb stairs.

Anyway - the carers each day are provided by the local authority. Don't think she pays at all. Should she go into a home, then there will be an assessment of her assets, and the residential care provided would be paid for via her house (either by selling it, or by a charge being put on it so that when it is sold, some money will go towards the cost of the care.

My step-mother's mother is in a similarish position, but had no assets whatsoever. Her care in a residential home is completely paid for by the local authority I think.

It sounds like such a difficult position to be in, for your parents. This is the by-product IMO of improved health care - people live longer and more people in your parents position have the difficulty of caring for elderly parents. My grandmother, for example, would die were it not for frequent antibiotics and being cajoled into eating by the carers. Physically she is just about clinging on. Mentally, she has long gone

Both my parents had Alzheimers and I sympathise hugely. I would really fight for a diagnosis, Ripeberry. Aricept can help/delay the onslaught in some dementia, if caught early enough - am sure Tamum is more informed than me. Re financials, looneytune, I think that the NHS has to offer care in as appropriate as possible home. You may not be happy with that home - I was lucky enough to be able to have some choice over where my mother stayed as we could afford to pay the supplementary fees. Also, if she has over a certain amount in her bank account/investments/property etc, then she's not entitled to anything. At least, that's how it was until three years ago when my mother died. Alzheimer's society a great support network.

Sykes, you're right that it's not a huge help in Alzheimer's, just slows it in some cases, but it does work astoundingly well in many cases of LBD. I have seen one paper with a two year follow up of 90 odd patients with LBD who all showed a huge improvement over 4 weeks, and then maintained it over 2 years. My dad has gone from scoring 14/30 on the verbal reasoning type test they do to 30/30. It's the only good thing about LBD, which is otherwise completely horrendous. My grandfather had it too, so I've seen it right through, and also feel like there's a big red arrow pointing at me (that's what you get for being a geneticist!). It must have been incredibly hard for you to see both parents go through it, I'm so sorry.

Thanks, Tamum, masive sympathy to you and glad that your father has some respite. It is such a cruel disease. Re the red arrow - I too feel that it's pointing directly at me. For some reason I had been lead to believe it skipped a generation, which I am sure is absolute nonsense.

The genetic basis varies enormously, sykes- it can be recessive, in which case it could skip a generation or disappear, but it can be dominant too. We just have to hope that the hopeful signs of new therapeutic agents will have really come to something in the next 30 years I guess. Sorry, that was crass of me to whinge like that, I should have thought it would be worrying you too. Feel free to CAT me if you ever want to talk about it. I have to say though, that Alzheimer's is common enough that it is entirely possible that both your parents happened to have it as a sporadic case and it's just a horrible coincidence. Unless they were distant cousins or something there's really no reason to think it had the same basis in both of them, in which case you're at no more risk than anyone with just one first degree relative. I'm not sure I've explained that very well, sorry.

looneytune - I can really recommend the AD talking point forum that tamum has recommended. My grandma has AD and is in a home, she has had the disease for about 10 years now. It's horrible, it really is, please encourage your mum (and yourself) to get as much support as possible.

Tamum - I didn't know that about Aricept and LBD - it's not known in my Grandma's case exactly what form of dementia she has (quite common not to know I think), but they seem undecided between AD and vascular dementia.
I really hope they come up with a prevention before my mum gets old, I would hate to think of her in this position, she would absolutely hate it.

Tamum, gosh didn't mean to make you feel guilty. Please don't and thanks for the very kind offer. You've explained it very well. Hope you get good support with your father - and everyone else on here, of course.

Thanks sykes, and do CAT any time

Katy, I think the thing that makes LBD obvious is that people with it have Parkinson's like features, but react very badly to medicine that would normally be used, like L dopa. If your grandmother doesn't have any tremor or anything then it probably is more likely to be Alzheimer's or vascular dementia. It was very obvious with my dad when they gave him medicine to start with, he got this kind of very stiff, immobile face like a mask, and that's very characteristic. They've lowered the dose now, so he can smile again

Sorry to ramble on your thread, looneytune!

Oh, I see, thank you.