I despair, I wish I could just not care, but dear god give me strength

[Kbear]

I can't even begin to explain but I am going to blow a gasket. I care for my elderly in laws. It's a minefield, and a nightmare, and stressful and how does life come to this.

I just got off the phone to MIL, she is rambling, she doesn't listen, I try to help, she talks over me, she's had a lovely afternoon while I was panicking at work because I phoned and she was calling out for FIL and saying oh god oh god, what shall I do? then the phone went dead. So I rang BIL, my DH was at work, I was at work, all miles away. SIL drove over there and there they were all happy as larry drinking tea and the phone's on the side off the hook. Tonight she doesn't even remember SIL going over there.

She forgot to give FIL his meds for four months. I just found out last week. Arranged all their meds again, she can't remember to give them. They're in a box marked for the days of the week, she gives Monday morning and Thursday morning instead of Monday morning and Monday evening.

Today they thought they'd go to the pub for lunch - FIL doesn't know his own name or where he lives, he can hardly walk but off they trundle down the garden to waiting cab, he falls over, almost takes her with him.

How in hell can I look after them? I have two jobs, two kids, one DH!

There's so much more, I am too exhausted to explain, DH is on nights so I;m not calling him to talk and stress him out even more.

I want to cry. No response necessary. Just getting it out there.

K bear you are a saint! just keep going- but look after yourself too.

Hi KBear, well done to both you and your DH for continuing to soldier on and be very patient. I think if she does get a spell where the confusion seems worse than usual (I presume she always some a small degree of confusion daily, which can become annoying or personal to others - eg her comments about her bank cards - sometimes), it is worthwhile calling in the GP to make a home visit - or bring her to the practice on the same day. Firstly because it's not unusual for elderly ladies to get infections very often (eg bladder infections). And secondly so that her GP gets a clearer idea of how bad things are on a day to day basis for them and for you. If her GP practice is very poor at arranging home visits or giving them urgent appointments on the day, it is worth mentioning/threatening to switch GPs. At their age and their level of infirmity, your parents in law are medically entitled to have urgent attention when the situation requires it.

The other thing that I was going to mention is that someone could do the pills for your parents in law, so that it's not up to your MIL to remember to do it correctly, if her memory/vision/cognitive function/all three are impaired. I can't remember if carers are allowed to give pills, or whether they are only allowed to watch/remind the patient to take them. If the carers are not allowed to have anything to do with medication, a district nurse could go in to do it daily (possibly except Sunday, I can't remember if they work every day or whether it's just 6 days a week - but ask the GP surgery, they would know). The GP could be asked to have a look at the pill prescriptions to check if they can all be rationalised down to as few pills a day as possible - eg some medications come as a one-a-day slow release tablet instead of taking it twice a day or three times a day. And most once a day pills don't have to be taken first thing in the morning, they could just as easily be taken mid morning or in the afternoon, as long as they get taken. Hope that helps!

how's it been going kbear, is no news good news?

is it slowly working out?

fingers crossed for you

Another MN friend hoping all is well?

Hello - apologies for the radio silence !

Had a pretty good week (except for MIL continally telling us that FIL doesn't want the carers any more - which is code for "I" don't want the carers any more...)

... until Friday when me and DH called in on them and found FIL didn't know who MIL was and demanding to know what we had done with her. He said we were all trying to make him go into a mental institution and it was upsetting him that she had been replaced by that woman on the sofa (who was MIL in a blouse she hadn't worn for a while....). He was insistent that she would NOT leave the house without her wheels, she can't walk far, he was almost in tears.

I said to MIL to go and change into the top she wore yesterday which she did and she walked back into the room and he said "where have you been?". He thought it was some kind of joke we were all in on. I knew who I was and who DH was but MIL had morphed in his mind into a stranger.

It was drawn out much longer than I can describe here and by the end of it both DH and I were as stressed as we could be and I was almost in tears.

The upshot was .... MIL had been letting him drink vodka (I know, you couldn't make it up).... he likes it apparently. FFS, vodka and a cocktail of pills, no wonder he was delusional (although didn't appear drunk IYKWIM, no slurring or anything, just absolutely dead certain that woman on the sofa was not his wife).

I went yesterday and all seemed to be well. She is "aggravated" with the carers. I keep saying "the doctors set it up, nothing to do with us, if you refused the carers, FIL would still be in hospital" and that placates her temporarily.

She is back to calling us all the time but at least not in the middle of the night yet. I am going to get FIL a wheelchair (at her request) so one of us can give him a spin round the village from time to time so he's not housebound.

Still up and down then.

Good reply about the carers. Does the team know to contact you if your PiLs refuse access to the person?

MIL is the bigger problem - giving him vodka and orange at lunchtime - I ask you. A man that falls over enough, without drinking bloody vodka FFS.

I said, you're not helping him, it's not about denying him a little treat, it's about keeping him from hurting himself more - he is still black and blue from the last falls. She is like a petulant child being told what to do or what not to do - she was like that before she was 82 though.... She is always in charge, she decides what he does and doesn't like to eat, he doesn't even know himself.

I think you really need to start looking at them no longer being in their own home any more

Hi Kbear. Just come across this thread and I can't imagine what you are going through. My father had dementia and he is 82 and frail. Thankfully, for me anyway, I am saved from your situation by the fact my mother is 10 yrs younger and pretty fit really.

I just wanted to say that my mum has had to get rid of all the booze in the house because my dad can't just have one glass of wine he has to have the whole bottle which with Alzheimers meds and being unsteady of your feet is not great. He kicked up a stink about not being allowed it any more but seems to have forgotten about it now. You might have to get rid of all the booze for them if they can't see that it is a bad idea - tell them they have already drunk it if they can't find it and then 'forget' it when you go shopping. Not that you don't already have enough on your plate.

My father was in hospital and lost the plot for a while too, well on both occasions they have admitted him. The hospital blames dehydration and the medication too. He thought he was on holiday and wanted my mother to get his clothes so he could go home as he didn't like the hotel much.

At least your FIL wasn't mobile enough to do what my dad did and go round and tickle all the feet of the other patients in the ward. Apparently it was funny and they had no sense of humour. Difficult to laugh when you are in your dying hours though, as some of them were.

He also got kicked out of a day centre scheme for being to argumentative. However, it might be worth seeing if your PIL could make use of something like that. It would get them out of the house for a bit. Do you think they would agree to go if they thought it was some sort of club?

I greatly admire the way you have stuck with it. My mother stopped visiting my father in hospital because they couldn't cope with his moods and his shouting and kept reporting everything back to her, like she could do something. She can't -he is like it at home. Seems to be too much truth in the reports that hospitals don't know how to handle Alzheimers/dementia patients.

Hope you are OK this weekend.

Hi Kbear. Latest developments must have been tough. Fancy giving him vodka! You're fighting so many battles aren't you?
G'dad also threatened again to cancel the carers this week. This week he fell asleep around lunchtime, with the fire on full and hottest day of week, the carer arrived at 7 and found him practically unconscious. She woke him and he felt awful, sick, confused. She made him a drink, got some toast down him and he came round. Mum reminded him about this when he said he was going to ring them. He'd probably be in hospital... or not.... if the carers hadn't been there.
My mum rang the carers, who offered to ring g'dad to discuss things. Maybe that might be an option for you? Would MIL find that useful?
Hope this week is better .

BIL went round there and found her on her way back from shops with a bottle of Baileys and a bottle of Sherry. I will be going round to read the riot act tomorrow. SHE will be the reason he will end up back in hospital. FGS, why the booze?

I sound like their mother... stomping round there to yell about drinking.... but he is on lots of pills, is confused most of the time, why add alcohol to the mix????

DH gone to bed early tonight with stomach cramps - we've both had that quite a lot recently - it's like a big ball of stress and nerves in your stomach.

I am going to say if they keep drinking I will stop coming round. Tough love! Is that unreasonable you think? He is black and ruddy blue from falling out the door, falling over in the garden and in the house two weeks ago and she went out and added more booze to the vodka and the brandy that is already in the cupboard.

WTF?

but I know I won't stop going round

god, I wish I didn't care, and there is my opening line from the day I started this thread.

Huge hugs Kbear.

I wish I was like my brother and didn't care. Instead, I'm trying to work out just why the hospital ring someone with a severe language deficit based dementia with important health information . Apparently theres no system in place to tell them that someone can't understand what they are told.

But at least my oldies don't drink ! Though the PIL are another story entirely and usually one of them has a fall on holiday due to their gin based diet

drink is my mums biggest enemy

I had a really bad time with her last yr over it, she was hospialized due to it and this was one of the many final straws for me, I told her her drinking was killing me, the stress was overwhelming and all I got was "you worry too much" from mum and siblings............eventually I got her to stop, I told her of she kept on drinking I wouldnt see her anymore and I truly meant it, I had had enough.

so she stopped

then last week at the shops in her wheelchair she asked for the usual sweets and soup, but then said she wanted sherry. I said no and didnt get it for her. I phoned her heathcare suppliers and told them she was asking for alcohol again and not to buy it for her.

its really sad when your mother becomes your child, then you need to stop her drinking and killing herself and you need to tell others about this problem, its embarrassing, like you're telling tales on your 84 yr old mother

I've had enough of it all, but theres no choice, you have to keep going

They were never big drinkers. I don't understand why suddenly they are drinking in the day time. Vodka and orange with their lunch? She is going to hate me but tomorrow I will have to say the drinking must stop. A Baileys in the evening is fine for her, but no alcohol for him and certainly not spirits.

you have a lot on your plate

good luck

KBear, I don't know if this applies in your PIL's case but many elderly men and women with dementia often have vivid memories of the past (like their childhood/teens/twenties/thirties) and can't quite work out where they are in the present, and have difficulty recalling recent memories and events. Am just wondering if the reason for the alcohol was that she used to organise parties or celebrations and is confused, thinking that she's still doing them? I don't think she is aware that she's bringing enough alcohol home to fuel a big dinner party, but whatever the (very intriguing) reason, I don't think she's even aware that she's harming her husband's health. She might well think that they are in their twenties and on holiday or something.

As RabidEchidna says, I think in the medium to longer term you and your DH may need to start considering the possibility of them living in supervised accommodation - ie a residential home that is set up to look after elderly patients with confusion problems. (The next step up from living in one's own home is often warden controlled accommodation but with issues of confusion or dementia, they would not be eligible). As time passes, issues like him getting confused about his wife, the problems with the alcohol (comic as they seem now - although I'm sure they were anything but at the time) will increase and get more frequent, or take on a more worrying aspect with regards to their safety. I don't know when that time will come for your PILs, but if they continue to live to a ripe old age, it will come eventually.

Hi there i do know how you feel as have gone through that worry myself with my own mum. The only advice I can give is pull on as much help outside as possible be it friends, support groups and charity organisations - if it is dementia then there are organisations like them that can give you some advice.

Part of the reason your PIL have started drinking during the day is because dementia reduces inhibitions. Where once they might have been sensible and recognised that drinking during the day was not a good idea they now don't worry about 'sensible' and what is appropriate behaviour and just do what they want. It is probably the reason your MIL is phoning in the middle of the night. She is no longer aware or at least doesn't care that this is not the way you do things.

Hope you are OK Kbear and things are on an even keel this week.

I feel for you. My MIL has Alzheimers and is cared for by FIL 250 miles from us. It has taken us TWO YEARS to get him to accept some help - a carer in teh morning and evening for half an hour. He too thinks he can do it all alone. What he needs is far more than this but neither of them will accept it. I can see there being a massive crisis forcing them to accept help.

MIL apparently does not have dementia - her mad behaviour stemmed from dehydration - she is much better now (as is he, no falls since, touch wood). She just is a control freak and WILL NOT have anyone telling her what to do. She is forgetful but she's 82, she's entitled to be, but she has had three dementia tests and flown through them.

She didn't notice that FIL was sitting there eating his lunch with no trousers on yesterday though....

She HATES the carers but says it's him who hates them. He couldn't care less. She says they come too early, too late, but when I look in the book it's a perfectly reasonable time that they came.

So I said, if you say they came at 10pm and the book says 8pm, I will ring and find out what is going on..... so she said, no no no please don't, you'll get her into trouble.... which is code for "I'm lying and making it out to be worse than it is because I don't want the sodding carers to come"....

I tell her all the time, without carers to help she will be back where she was, and he will be in hospital again, the doctors said without carers he will have to be in hospital, why fight it? I see why she fights it, but surely she wants him home at any cost?

As for the drinking, they always had a drop of brandy in the evening but it's the day time thing I don't get. I think she thinks he's entitled to have a vodka if he wants one, but doesn't think of the meds and the confusion he's already facing.

Still, an even keel at the moment yes, which is why I haven't been on here moaning as much !

Thanks for the update, you seem to be handling MiL very well.

20 years of practice - I know her very well. It is good to see her looking well again, she is getting more sleep so can cope better in the day.

The answer is simple... WATER.... they are drinking gallons of it, whereas before they would go all day with a couple of cups of tea. I buy them small bottles of water and they are drinking it as I asked them to. She knows it's working.

There will be ups and downs ahead I'm sure but at the moment, ssssh, all quiet on the western front!

KBear - your MIL may well not be telling the truth about when the carers are visiting .

But there might be some truth in it .

IME , from years of helping to care for someone who had a huge care package ( in SE London ) ,some individual carers would routinely attend at a time different from the one they'd entered in the book .

And routinely fed the client loads of talk about how busy they were ,how they had to come at that time because the agency had given them another client at the same time ( also an element of truth ) .

The elderly person was always really ,really anxious about any complaints to agency .

The person I helped care for also hated having carers in ,and I didn't blame her for a second . It's not nice . Some of the carers were nice but many were poorly trained ,exploited by their employers and frankly not helpful .

We accepted it because ,for this person it was a better ,albeit not perfect ,alternative to going into residential care .

But we had years of managing the situation ,talking to the agencies and social services .
And years of interceeding between the carers and what they convinced the elderly person was how things should be done and the elderly person who would never go against them .

It is a minefield isn't it. Of course your MIL is entitled to forget things - I'm banking on it - I just wondering how long I can blame pregnancy brain for my forgetfulness before I can start blaming my age - DS2 is 8 now. I might be stretching the limits of that one now.

On the other hand, giving your FIL alcohol isn't really about being forgetful. I hate to say this but my dad did on occasion pass the dementia tests (depends on his mood and how cooperative he is being) and he does have dementia. He has been brain scanned and most of the time it is very obvious by the way he behaves but the tests aren't great at picking it up. My mother has sat in on them and wonders how the useful they are for people are the beginnings of the disease.

I know you say she is likes to be in control but she is potentially doing her DH harm by giving him alcohol. Would she have gone that far to prove a point 10 years ago or even 5? Not saying she has detectable dementia yet but she might well be on the way and with the average time between becoming ill and getting a diagnosis of dementia being 5 years it might be worth bearing in mind although I am know you have no choice but to bear it all in mind.

Water is marvellous stuff though isn't. You wouldn't believe it makes such a difference - my father has been in a state of collapse and complete confusion and it turns out he has a bladder infection and is dehydrated. A while on a drip and lots of water and he is OK again a couple of days later. I would never have believed it could be something so simple.

Glad things are quiet. I hope you have a peaceful Easter and a chance to relax a tiny bit.