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Care & carers

Tipping Point

(65 Posts)
Granny23 Sat 30-Dec-17 10:37:32

Last night the thing I have been dreading happened, DH had gone to bed quite early and reappeared while I was just shutting down the computer. 'Oh, hello' he said 'you are still here?' and went on to ask how I was getting home. He explained that he was no longer allowed to drive and then invited me to stay the night. He was wearing the PJ's I gave him for Christmas and broke off to pose, show them off. Then the bombshell 'Do you like my new pyjamas, MAW?'

He went on to say I could have the 'spare' bed (ie mine) next to him in the front bedroom and pointed out where the bathroom and toilet were, and where I could make a cup of tea. Then off he went to bed again saying 'Don't wake me when you come to bed, Maw, see you in the morning'.

Now MIL, who has been dead for over 20 years, hated me from the start, she described me as a Golddigger, who had stolen her only Son. I knew that the time would come when DH would no longer recognise me, but to be taken for his Mother is too much.

This morning he was his usual confused self but did know who I am and where we live - probably been overtired last night and out of the normal routine with all the Christmas comings and goings. This morning I can rationalise but I am still so upset. Not really looking for sympathy just thought if I wrote it down, it would get it off my chest, then chin up - Onwards and Downwards.

Thanx for Listening.

OldMeg Sat 30-Dec-17 10:41:28


Eglantine21 Sat 30-Dec-17 10:45:22

How upsetting. Im so sorry.
Maybe he recognised you as the person who is taking care of him and this then translated into his mother, his carer in his early years?
In his last stages my husband sometimes thought I was his secretary. I think because I was organising everything.

Nanabilly Sat 30-Dec-17 11:04:50

My mil in her last couple of years thought I was her sister and that my hubby , her son , was her husband.
It's normal but still upsetting as it's confirmation that they are not the person they once were but try not to take it personally. It's not his fault it is the illness.
It Is upsetting though when these things happen.

kittylester Sat 30-Dec-17 11:05:33

I think he would be imagining you were his mum too. He is probably thinking of himself at a much younger age, you are older and looking after him - therefore you must be his mum.

Not nice for you though! flowers

kittylester Sat 30-Dec-17 11:08:42

If I've got the link correct this is a very good illustration of how the brain works in dementia.

kittylester Sat 30-Dec-17 11:30:08

I hope I've remembered correctly that your DH has dementia, G23. If not, I apologise!

Jane10 Sat 30-Dec-17 11:45:10

Very sorry to hear this granny23. It's a sad stage in life. Very best wishes to you and good luck in the new year.

annsixty Sat 30-Dec-17 12:03:21

Granny23 many commiserations to you.
Your H has deteriorated so much faster than mine, his confusion is escalating but not like that.
He has got up and dressed afew times in the middle of the night and often thinks our GD who he has always adored lives with us.
He will remark that she is having a good sleep or a lie in.
I feel so much for you, it is a huge downward turn, strangely the men I know of who have vascular dementia ( my H has Alzheimer's) have all thought that their wives were their mothers.
So very sad to see.

OurKid1 Sat 30-Dec-17 12:09:18

Oh Granny23, that must have been awful for you. Christmas, with all the changes in routine it brings, is often the trigger for a sudden change in people who are living with dementia. Doesn't make it any better for the rest of us though. I know it's difficult (been there with my parents and now as an Alzheimer's Society volunteer) but try to draw strength from the fact that he seems to be content.
I do feel for you, wish I could say something to really help, but can only say that I, along with others here, understand and to send you a big hug.

Bathsheba Sat 30-Dec-17 12:09:55

granny23 this is so upsetting for you. I think, like others, that he saw you as the person caring for him and his brain could only compute that as being his mum. I'm so sorry you're having to live through this terrible condition with your DH. ((hugs)) and flowers for you both.

MawBroon Sat 30-Dec-17 12:10:15

Sending commiserations to you too granny 23 and anybody in a similar position. This must be heartbreaking for you, but is there any consolation in hoping that he is unaware of the confusion?
I think your reasoning that he was overtired (possibly even half asleep) and the disruption of his normal routine sounds entirely plausible. But nevertheless flowers

Luckygirl Sat 30-Dec-17 14:33:31

A landmark in the progress of the disease - and one that you must have been dreading, however much you knew it might happen. How very difficult for you. It is usually at night or in the evenings when these things happen - brain slowing down for the night.

I am thinking of you. flowers

silverlining48 Sat 30-Dec-17 18:32:03

Granny23 i am sorry your dh has this cruel disease. It is very hard. Take care of yourself. Being a carer is mentally and physically exhausting and can be lonely work. Do take care of yourself and try to factor in a break now and again.
Sending you good wishes.

Maggiemaybe Sat 30-Dec-17 19:34:30

I'm so sorry, Granny23, this must have been so distressing for you. Life can be very hard sometimes. flowers

Fennel Sat 30-Dec-17 20:39:25

How upsetting - I can't imagine how it must feel. Your world turned upside down.
Do you have support from anyone else in the family?

GracesGranMK2 Sat 30-Dec-17 21:39:18

flowers Granny23 I know you will have known this would come but it doesn't take away the shock and another bit of the continuing loss. I am so sorry. Is there anyway you can get a bit of time for yourself and be with someone you can have a 'normal' conversation with. This is so wearing for you. I know you will be taking care of yourself for your husbands sake but please do it for yours if it is possible.

Granny23 Sat 30-Dec-17 23:21:23

I can't thank you all enough for your understanding and wise words. DH has been OK today but now, as it is approaching bedtime he has been scouring the house for the 'workmen' who were here today because their van is still outside. The reality is that there has been no one here but us chickens and the van belongs to an across the road neighbour and sits there every night. Like Annsixty's DH he regularly thinks the DGC are here and hiding from him.

The reason for the apparent rapid progress of DH's condition is that it took years to get a proper formal diagnosis as his symptoms did not appear to fit any of the types of dementia (and also, being a clever man) he managed to charm his way through verbal memory tests, blithely making up car registration numbers and avoiding the count backwards in 7's from 100 type by boring the tester to death with a long account of his problems with numbers caused by his 1st teacher in Primary school. I sat in on one test and although he did not get a single question right he was deemed to have only mild cognitive impairment. It has only been 6 months since, following a diagnostic brain scan, he was deemed to have mixed Dementia - Frontal lobal with Alzheimers. At that time the Consultant thought DH was in late Middle Stage.

Last Wednesday was his final day of 6 months of once a week Day Therapy but we have been fortunate that he has been awarded a place in an Alzheimers run centre for a half day a week and we will have a trial run of respite care for 3 days towards the end of January. His general health remains excellent and he is generally quite content, loves his meals, TV, the DGC, though he frets endlessly about the wheelie bin rota, any card which dares to park in front of our house, his medication, what day and time it is, fiddles with the central heating and TV controls, switches things - cooker, fridges, computer, etc off at the main switch if he notices they are on checks the car 4 or 5 times daily and recently lost the ability to make himself a cup of tea, or heat soup in the microwave. He point blank refuses to go in the bath or shower but takes 1.5 hours to wash and shave at the sink every morning.

Anyway, ask any of our friends or DH's relatives and they will confirm that DH's 'Maw' was in all respects the 'Mother In Law from Hell. I could go on all day and night listing the family celebrations she ruined, the things she called me, the way she treated her DH (a lovely man) her son and our DDs. In fact last night and today I have been unable to get her misdeeds out of my head, having scarce given her a thought since she died. Now I feel that the fickle finger of fate has brought her back into the centre of our lives - that she has literally 'come back to haunt me'.

GracesGranMK2 Sun 31-Dec-17 00:01:09

What is it with bins? I have to just empty mums bin in the kitchen and I always thinks she is about to cry so I feel a real heel. She always says (crys?) " but they don't come until Thursday". As it could be Thursday when she says it I'm a bit stuck and just do it as quickly as possible and then make a cup of tea or do something else to distract.

I am sorry about your mother in law. Do you think she made your DH feel out of control of his life? I imagine he feels that at the moment without it being anything to do with you. If that is the case he will be looking for what makes him feel like that and it would be easy for him to associate the feeling with his mother. I wonder if, rather then seeing you as his mother, his mother being there would be his logical 'jump' over the gaps he has.

I don't mean this flippantly but my mother was burning her meals or not cooking them properly. It could not be her so it had to be the fact (dementia logic) that I was ordering the meals on the internet and they were sending the rubbish because of this. This didn't hurt me because it wasn't personal and I have a feeling - only from my experience - that your DH is not 'seeing' you as his mother but 'seeing' that as the logical reason for feeling a lack of control and understanding. Could this be possible do you think?

By the way, we have now had a mental capacity assessment and disconnected the cooker. Mum will have to have carers to cook lunch and her evening meal but I am going over to do them at the moment. Because mum does not know why she may not cook the meals - she can do it without any problem in her mind - she keeps telling me I am like her mother. There is nothing worse, to her, that she can say. I keep telling myself it is because of her loss of control and the anxiety it causes but it still hurts and she is my very elderly mum. It is very different when it is the person you chose to spend your life with and it must hurt so much more. I am stepping this up to wine this time.

WilmaKnickersfit Sun 31-Dec-17 01:26:44

I don't know how you all cope. I really don't. I watched a TV documentary some years ago about a dementia village in the Netherlands which I think is amazing. You can read about it here

Hogewey Village

And this is a little video about the village

Hogewey Village video

The residents have severe dementia and need 24 hour care. The village enables them to live in the reality of the world they remember and it helps them to be calm. Now the first dementia village is planned for Canterbury the UK based on the laptop Hogewey model. I hope a village is built near me until science comes up with some effective treatment for dementia.

Best wishes to all of you coping with partners struggling to make sense of their world.

Baggs Sun 31-Dec-17 06:19:27

Just a hug, g23. What a hard thing to cope with. flowers

kittylester Sun 31-Dec-17 06:23:59

Please look at my link to the Bookcase Model of Memory - it helps understand do much.

aggie Sun 31-Dec-17 07:19:23

OH forgot who I was ages ago , but just for that day , now he calls for me if I am out of his line of vision , but at least he calls me by my name

GracesGranMK2 Sun 31-Dec-17 08:17:06

Kitty - what an excellent description. Many thanks.

kittylester Sun 31-Dec-17 08:21:19

It is good, isn't it. It is given to people who come on the Carer's courses and they all say how much clearer it makes things.

I meant to say that my mum had a thing about bins. Apparently, the people in the flat above were putting their rubbish in her bin. When I suggested putting hers in theirs, she got terribly distressed.