Hideous visit with mum today

[AndreaP]

Took my husband with me when I went to see mum today because my brother warned me she was not happy. Thought he would be the buffer required to keep her in order but not so. When I got there she announced "thank goodness you're here to take me home. I thought I would have to spend another night in this hole". Of course I had to say she couldn't go home and I told her she had a progressive disease which would get steadily worse and living alone was no longer an option. She is quite capable still of understanding this and I suspect she knows it to be true but this didn't stop her from launching into a tirade of abuse.

I had dumped her there for my own benefit. No one cares about her anymore. The place is a hell hole. She's frightened all the time. There's nobody to talk to. They boss her around. She's bored to tears with nothing to do.

She wouldn't look at the things I'd bought her. Doesn't want to watch TV. Wouldn't go for a drive to the beach. Doesn't want the paper delivered. Doesn't want the phone connected. Just wants to go home.

I asked her what was so great about home where she didn't see a soul for days. I pointed out she has more visitors now than she ever had and that all she did was sleep in her chair at home anyway and eat crummy food she had to make herself.

She wouldn't say why she was scared, I presume she means anxious. She was belligerent and resentful and downright hateful. She apologised to my husband for being like that but intimated it was all my fault. I sat there feeling ghastly and then I thought "stuff this" and asked her if she wanted us to leave. She said "please yourself" so I did. I said goodbye and left after a 20 minute visit. As I walked out the door my husband heard her say "****ing b****".

The thing is that I do see her point about being bored. They have put her in a section where the people are pretty far gone and she can't carry on a conversation with them. Not that she could hear them anyway but that's beside the point. A couple of the ladies have baby dolls to play with and this appals my mother. As we were leaving one said to my husband "can you kill me please?"

I will speak to the CH and see if she can be moved to a low care section where the people might be more sociable but communication will still be hampered by her deafness and refusal to wear her hearing aids. I spoke to my brother about trying to find somewhere else for her to go but he was adamant that she will hate wherever she goes.

Her situation may not be typical, I don't know. She is fairly articulate and lucid but asks the same questions continually and hallucinates at night. When I discuss these hallucinations with mum it is with the intention of explaining why it is important to have care at hand at night. But she just gets a furious look on her face and sulks.

I feel at this moment like walking away from the situation. If this is going to be the pattern of visits from now on why would I put myself through this? I expect the CH will not be interested in moving her to low care or will suggest she finds another facility as she is still technically there in respite while they assess her compatibility with their establishment. Even mum admits the food is fabulous and this has to be a big benefit surely. And on Friday she seemed perfectly happy to my daughter.

I am at my wit's end.

 

[Bod]

How long has she been in the home?
It may take up to 6 months for her to settle.
The "conversation" you describe is pretty typical, had it with my father several times.
If you are sure that she could not cope being in her own home, then you have done the right thing, by insuring her good quality care.
Whether she'll ever see that.........
Sounds as if your brother has had the same "conversation" with her, and knows the situation.
What do the staff at the home say?

Bod

 

[Witzend]

I am so sorry - this is so hard for you. From my user name you will perhaps understand that I have been through much the same. Awful, terribly upsetting visits - my stomach would be in knots. I would have to psych myself up to go, and I don't mind admitting that sometimes I chickened out because I just couldn't face it.

I think your brother is probably right in that at this stage, she will hate wherever she goes, and still demand to go home. To be honest, after a short while I stopped trying to reason with my mother that she needed 24/7 care - it was no use, since according to her there was nothing wrong with her, she had been fine at home. No idea that she had often been anxious or frightened, and could not manage the simplest things any more - could not even make herself a cup of tea, let alone any shopping or cooking or cleaning - she hadn't done any of these for ages and in fact would not leave the house any more.

Eventually I started down the good old 'love lies' route - I was looking for a nice little flat for her, just down the road from me, etc. etc. because she had been an inveterate 'mover' this worked for her, and because her short term memory was almost non existent she never remembered that I'd said much the same before.

Of course it will depend on the state of her short term memory, but a lot of people find that similar tactics are the best way, rather than telling the person they are there for good, if they can't accept the need and it just makes them angry or upset. Some people blame it on the doctor', I.e. he/she just wants you to stay until you're a bit better/stronger, or while they sort your medication out. Or else they are just there while major decoration/plumbing work is going on at home - whatever will suit the person and their circs, really.

Eventually most people do seem to forget the home they have recently left - sometimes it happens quite quickly. And if they talk about 'home' it is often one from way back, maybe a childhood home, because more recent memories are lost. My mother started this, and I would just tell her, yes, maybe we'll go tomorrow, when the roads aren't so busy/icy, whatever. That would keep her more or less contented for the moment, and again, she never remembered that I'd said much the same before. There are times when memory loss can be a blessing...

Personally I would cut visits down if they are very stressful for you and only serve to upset her. When things were very difficult I went just once a week - of course I felt bad for not going more often but it was just too stressful, and apparently she was hardly ever agitated or upset when I wasn't there. Sad to say, sometimes the closest relatives are the trigger.
I do hope she begins to settle soon, for all your sakes.

 

[Lindy50]

Hi Andrea

My mum moved into a care home last week, having lived very unsafely at home, falling, being incontinent, not eating, getting dehydrated etc. so I had no choice.....

But, but.... it still feels horrible, and my mum is reacting in much the way you describe your mum. I can see she is anxious, and she too is in a 'high care' wing when even they say she doesn't really need to be...and I have that dreadful look from her that says "it's all your fault".....

I managed to find the 'Head of Care' a couple of days ago (different person from the Home Manager, in this place), and had a good long chat. Result! They are moving mum to a room on the lower dependency unit when it becomes available. Of course I'm not sure whether mum will have settled better where she is by then, but at least the option is on the table. So I'd say.... Talk to the highest grade member of staff you can find.

Sending (((hugs)))

Lindy xx

 

[Lindy50]

Hi Witzend

Thank you for your very helpful ideas It's so easy to lose sight of how to deal with things, when stress levels are so high.....

Lindy xx

 

[looviloo]

Having had similar visits with dad, I really feel for you :-/. It is horrible. And what makes it worse is that you can understand to some extent why your mum is feeling like she does.

I've been struggling to find strategies to deal with visits like this - the mental health worker I saw this week suggested that I blame his reason for being in the care home on the doctors and nurses that he's seen - saying that they think it's best for him to be where he is etc. Which is true, of course, but not entirely the whole truth.

A little while ago, dad told one of his visitors that it was my fault he was being kept prisoner in the care home. He was feeling angry and resentful at the time. Just this week he told me that the care home had filled up with lots of old people who were all in their 80s... he's 87! He thinks he's much more capable than he actually is, so doesn't see himself in the same way he sees the other residents. But when I stand back and take a less emotional look, I can see that he's just like everyone else there, with plenty of needs and challenges. And the other residents probably look at him and think he's more decrepit than they are!

I'm sorry you had such a dreadful visit, but I'm sure you know that it varies a lot and perhaps next time will be easier. Though in your shoes, I'd leave it for a while, to clear my own head if nothing else xxx

 

[AndreaP]

She has been there just over 2 weeks. I appreciate your empathy and advice. I don't know if we moved her too soon, perhaps we did. I hate the fact that she is so miserable and I can understand why but mum was never one to make the best of a situation. She has always got in a huff and "spat the dummy" as we say in Australia whenever things didn't go her way. Like refusing to attend my son's wedding because it was in a Catholic church despite having no religion of her own.

Now of course she isn't able to get her revenge on me any other way than to make my visits as unpleasant as possible. This isn't the dementia she has always been a thoroughly nasty piece of work particularly towards me because I was the only one who ever stood up to her. My brother never has and won't now - he defers her questions to me rather than bear the brunt of the confrontation.

It's just so horrible for everyone. She isn't happy, we aren't happy, we did what we thought was right and there was really no alternative but she believes she was dumped there to die. I had such hopes for a better outcome but it seems I made the wrong choice of CH. I'm tempted to look elsewhere but then there is sure to be something wrong with that.

I will speak to the doctor when he calls there on Tuesday. I will see what he thinks about her level of care because it seems to me that the visiting doctor is the one who calls the shots there. Whenever I suggest anything they say "we'll see what Dr says". Luckily he seems a decent, compassionate man who has empathy for patients and family.

 

[ellejay]

My mum was the same for ages. Everyone was told " It's her fault I'm in this dreadful place, she signed the papers that got me put away"

My mum also thought there was nothing wrong with her, didn't remember she'd burnt the bottom out of pans & couldn't make a drink.

It's true that reasoning rarely works, an answer will be found. Even the "Doctor says you should stay" didn't work for me, because mum just flatly refused to believe she'd ever seen a Doctor. Even the funny lump on her arm (caused because she kept taking the plaster cast off her broken arm & it healed misshapen ) didn't convince her........." No I did that when I was a kid!!"

In the end, I just had to grit my teeth & switch off as much as possible. Like you, on the days I was told to "**** off if you're not taking me home" I went.

4 years on, she's still not happy, but is less venomous. I only visit once a week.



Lin x

 

[canary]

2 weeks is nothing Andrea.
Mum is settled in her CH and is thriving, having made friends and put on some weight, but even so, it took several weeks for her to settle.
Speak to the doctor about whether it is the right place, but honestly, I suspect that your brother is right and she will hate anywhere else too.

It is very easy to be fooled by people with dementia who are fluent verbally. You can talk to them and think that you have had a proper, reasonable conversation when, in fact, you havent. Logic and reasoning are the first casualties in dementia and it just doesnt work. I remember in the early days when mum first went into her CH she would say - "why cant I go home?" and I would, very patiently, explain all the reasons and thought I had got through to her. At the end she would say "yes, I can see that - but why cant I go home?"

 

[Angela T]

She has been there just over 2 weeks. I appreciate your empathy and advice. I don't know if we moved her too soon, perhaps we did. I hate the fact that she is so miserable and I can understand why but mum was never one to make the best of a situation. She has always got in a huff and "spat the dummy" as we say in Australia whenever things didn't go her way. Like refusing to attend my son's wedding because it was in a Catholic church despite having no religion of her own.

Now of course she isn't able to get her revenge on me any other way than to make my visits as unpleasant as possible. This isn't the dementia she has always been a thoroughly nasty piece of work particularly towards me because I was the only one who ever stood up to her. My brother never has and won't now - he defers her questions to me rather than bear the brunt of the confrontation.

It's just so horrible for everyone. She isn't happy, we aren't happy, we did what we thought was right and there was really no alternative but she believes she was dumped there to die. I had such hopes for a better outcome but it seems I made the wrong choice of CH. I'm tempted to look elsewhere but then there is sure to be something wrong with that.

I will speak to the doctor when he calls there on Tuesday. I will see what he thinks about her level of care because it seems to me that the visiting doctor is the one who calls the shots there. Whenever I suggest anything they say "we'll see what Dr says". Luckily he seems a decent, compassionate man who has empathy for patients and family.

Andrea, I am in a similar situation with my mother. She has never coped well when things don't go her way, she refused to attend the Memorial Service held for my father by his work (he was a public figure), because she always resented that his work took him away from her.

I also think that she is not spiteful because of the dementia, but because it is the way she always has been. She now calls me regularly from the NH to say "I HATE it here, I want to go home! Get me out of here." The past 2 days I have replied that she needs to be cared for etc... "Who says so?" I tell her it's the doctors; "What doctors ? I haven't seen any doctors!" I repeat who she has seen etc etc... and that there is nothing I can do, I cannot take her out of the NH. "You"re such a wicked, wicked girl!" was how she ended both conversations, yesterday even slamming the phone down.

So I was dreading today's visit, and geared myself up for more mean remarks... but in fact she was sweet as pie. No doubt she has no memory of her abusive remarks.

But she isn't happy, she says the staff are kind, the food is good - the problem is the other residents ! She is in an Alzheimer's unit, for her safety, otherwise I think she would walk out... But it's true that she seems to be one of the most lucid residents... there isn't much in the way of meaningful conversation... she is bored. It's true there is not much activity. There is a lot of sitting around, waiting...

Like you I wonder if I made the wrong choice of NH. The staff are very kind, and that is why I chose it, plus they seemed to have a lot of activities, but in fact a lot of the activities are for the open units, not so much for the Alz units...

I too am tempted to look elsewhere, but no place is perfect and my husband and daughters say she will be unhappy wherever she is - they are right, I'm sure...

She has been there (near where I live) 2 months, and before that she was in a NH in London for 5 months... I do wonder if she will ever really settle...?

 

[Lindy50]

I remember in the early days when mum first went into her CH she would say - "why cant I go home?" and I would, very patiently, explain all the reasons and thought I had got through to her. At the end she would say "yes, I can see that - but why cant I go home?"

I had to smile, canary, sad though it is. I had the same conversation with my mum today, pretty much word for word....even though I knew it was pointless. In fact, mum was just getting more and more agitated.

Eventually I managed to change the subject, chatted for a bit, then I went to use her en suite loo before I left. I found it clogged with soiled pads that she must have taken off and stuffed in there And only as I left did I realise the obvious implication....she presumably was no longer wearing a pad....

So, despite mum's lucidity, her actions were still showing the reasons why she was in the care home....if only she could see it

Lindy xx

 

[Lindy50]

My mum was the same for ages. Everyone was told " It's her fault I'm in this dreadful place, she signed the papers that got me put away"

My mum also thought there was nothing wrong with her, didn't remember she'd burnt the bottom out of pans & couldn't make a drink.

It's true that reasoning rarely works, an answer will be found. Even the "Doctor says you should stay" didn't work for me, because mum just flatly refused to believe she'd ever seen a Doctor. Even the funny lump on her arm (caused because she kept taking the plaster cast off her broken arm & it healed misshapen ) didn't convince her........." No I did that when I was a kid!!"

In the end, I just had to grit my teeth & switch off as much as possible. Like you, on the days I was told to "**** off if you're not taking me home" I went.

4 years on, she's still not happy, but is less venomous. I only visit once a week.



Lin x

I'm sorry you've had such a bad time Lin My mum also denies having broken her arm recently, saying triumphantly 'Ah, but that was when I was a kid!' as though she's found me out in a mistake and therefore, she should go home.....

Oh Lord, I never really thought it would be this bad....

 

[Amy in the US]

Andrea, I didn't want to read and run. This will be short as it's late in my time zone but I'll come back tomorrow and write a proper response.

The short version: I know it's awful. I'm really, really sorry. It probably will get somewhat better but may take months. I think asking them about a lower level of care unit is a great idea. (By comparison to the ward she's in now, she might love it there! This could work to your advantage!) But I'm still really sorry.

My advice: don't visit for about a month. Send your husband, other family members, whoever, but you just stay away until she's been there for a while. You may (inadvertently) be triggering her unpleasant behaviour, through no fault of your own, mind. I had lots of people warn me about this and indeed, it happened with my mother. So after the day that we moved her in, and one other day where I had to go in for paperwork, I didn't visit for 4 or 5 weeks.

While you're not visiting, get regular updates (by phone) from the staff and see what they say about how she's doing. The staff's accurate report of what my mother does and doesn't do, is (not shockingly) quite different from what my mother tells me!

Also: if they are serious about moving her to another ward/section/unit, ask if she can, before she moves, start going there for meals and/or activities and/or outings. That would ease the transition, perhaps?

I must go to bed but more later. Please hang in there!

 

[AndreaP]

I am going to stay away for awhile because I am probably triggering this behaviour. She knows my brother couldn't organise anything and so I must be to blame for her being there. She's still as shrewd as ever.

Mum was always getting my brother to run her around ("what else has he got to do?") and then I stepped in and said "enough". I think my brother is terribly relieved because he could never say no. He'd agree to everything she asked and then ring me and say "you'll have to do it".

I don't know that I trust what the care workers tell me. When she moved in the manager said "there are some ladies in this ward that will take mum under their wing and make sure she settles in". What ****! These ladies are significantly further down the dementia track than mum. They hardly say a word, just sit and stare into space.

I'm sure care workers are primed to tell the family that everything is hunky dory unless there's an incident. Plus mum would be polite to them and save up the abuse for when I visit.