"Where is she?" (late wife)

Discussion in 'I care for a person with dementia' started by Petrina, Jan 6, 2015.

  1. I hate those conversations.

    I phoned Dad in the home where he now lives. I woke him (his nap times are so erratic I can't be sure of avoiding them) and he was disorientated and distressed because he was. I explained where he was ("in your apartment in the retirment home in Such-and-such Road") and tried to reassure him that it's something that does often happen to him these days and that I think it's because he sleeps very deeply after lunch so doesn't wake fully. (Better that than "It's because you've got dementia, Dad." It's also fairly true.)

    He wanted to know where everybody was and one minute he understood where he was and another he didn't.

    But the heartbreaking thing was several repetitions at intervals of "Do you know where she is?" and "Give me a ring if she gets in touch."

    "She" probably refers to Mum who died many years ago. I usually manage to deflect the question without answering it, using phrases like "Everything's fine. It's nearly teatime. Have you got a cup of tea there?" (He will always have some tea left in his cup and it's a useful reminder that he hasn't been abandoned because there's no kettle in sight so he can see that he didn't make the tea himself.)

    I used to use a phrase someone recommended - "she's not with us". It worked for a long time both as a euphemism for "she's dead" and as an implied "she's gone out for a while", so according to what he did or didn't remember, it worked.

    I stopped using that after one day he asked what I meant then simply collapsed. (I only just managed to catch him.)

    It's now reached the tipping point where telling him that she's dead, to induce fresh grief at finding out "for the first time" that he has been bereaved would cause too much pain, but where I can't yet feel safe to him explicitly lying that she's still alive in case he suddenly remembers and loses his trust in me, because trust is essential when you're relying on someone else to re-orientate and reassure you.

    But that question "where is she?" will, I think, haunt me for the rest of my life. To be widowed is dreadful, to forget and wonder why your wife isn't around when you need her, why she isn't looking after you, is a terribly cruel aspect of dementia.

    At least when he thinks I'm Mum, that's bearable.
     
  2. Rathbone

    Rathbone Registered User

    May 17, 2014
    2,264
    Female
    West Sussex
    Aw Petrina, I am so sorry to read your post and wanted you to know that we are here, listening. What to tell you? None of us knows if telling him that his wife is happily shopping perhaps or will be at home doing whatever she used to do, will come back on you during a moment of lucidity. It is the hardest thing to juggle the real with the unreal. IMHO when you speak from the heart because you love him and wish to minimise his distress, you cannot really go wrong. You surely cannot make things worse for him if you total up what he is able to manage and what he is not. It just seems that way. The truth is that we do the best we can at the time. we can do no more - and sometimes we are surprised at how it all slots into place. Try to see what you say as Love Lies (coined by TPers) and be easy in yourself. My Loving thoughts to you in all this struggle. X Shelagh:)
     
  3. Sheepteach

    Sheepteach Registered User

    Sep 4, 2011
    161
    Somerset
    Aww Petrina! I just wanted to say I really feel for you. We have exactly the same conversations with my Dad - Mum died 20 years ago. At the moment he thinks she is on an overnight shopping trip with his sister ( his idea!), but previously he has even rung the police to report her missing.

    Fortunately, so far I have always been able to distract him with a cup of tea, or offering the newspaper etc. I truly dread the day when he will catch me out. :(

    From what you have written I think you are doing a great job so far - I have no words of wisdom for you but lots of virtual support coming your way. :)

    Also my Dad is alot more random just after he has woken up -I think there is a fine line between dream-time and reality for him quite often.
     
  4. Thank you for responding.

    I'm aware that I was away from TP for a long time before coming back when I am struggling to come to terms with all that I've been through with Dad.

    I remember when I first read on here about what you say to relatives with dementia in situations like this and telling myself I'd never lie to Dad. That's easy to say when you don't have to watch the pain.

    The silly thing is, who thinks twice about telling a friend a white lie to save them pain? Who hasn't told a friend their new hairstyle is great although (after making a show of pondering), on balance you personally prefer their usual one? Who hasn't told a neighbour with the ugliest baby you've seen in years that it's absolutely beautiful?

    But I feel that trust is so important when someone has dementia. Trusting in me is terribly important to Dad as he loses his memory.

    Partly, it's projection. I'm terrified of losing my own memory and not being able to trust others. If you can't trust others not to lie about your spouse dying, can you trust them when they say you'll be fed or visited or given your painkillers?
     
  5. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    I think the sort of fibs we tell someone with dementia, purely to save them distress, are not the same as common or garden lies. That's why we call the love lies.

    Similar to the new dress or hairdo we privately think is bl**dy awful - what about a 5 year old who anxiously asks you on Christmas Eve whether there really is a Father Christmas, because some wretched killjoy adult has just told her there isn't?

    Most of us would answer with a love lie. (Should add that when a miserable killjoy adult told my own 5 year old precisely this, I told her the woman had probably been so naughty when she was little that FC never came. So no wonder she didn't believe in him. It worked. :))
     
  6. Benrese

    Benrese Registered User

    Apr 12, 2014
    185
    Lancashire
    So sorry you are struggling with this. And yes, it surely is a common question.

    I abhor lies. I am the same in that I would not want anyone to lie to me ever. But Dementia is it's own universe. Remember, our brains can no longer function as they did before (once into the greater stages). It's VERY hard for us to understand that, it is for me anyway.

    We can look at Dad and we see him looking at us, confused, asking questions. Dad's wife died a week ago this Monday. Will we tell him this? No. Why? Well...we weighed this very carefully. Dad's brain is doing its own thing these days. He is remembering the past a bit, but the current moment seems more like a foggy dream in which he sees shadows of things, but his brain interprets them differently.

    A Christmas wreath hanging on the door is a portal and people can look in. The lunchroom is a cafe. There are these "things" that keep poking up whilst he is in bed. They are his knees.

    What gives him comfort right now? A lovely cup of tea, biscuits, a peaceful room, football on the tele. What bothers him these days? Loud noises, misunderstanding incoming information, to the point where it scrambles and brings him much anxiety.

    His wife will be in the garden, taking care of the dog, out to lunch with her friend...for all time now. That's where he left her, and that is where we will keep her on his behalf.

    I wish you some peace of mind for and for your family.
     
  7. The beat bobby got in touch. Dad had dialled 999 but couldn't say why, just babbled. They turned up at my/his house then phoned on my mobile.

    The bobby asked if Dad's mobile was registered in my name and I said that that the credit card on it is mine (I didn't ask whether that was how they'd found me or whether Dad had mentioned the address). He said they'd got my own mobile number from the neighbours, who'd also said that Dad's now in a care home nearby (ergo not in distress in the house requiring the door to be smashed down, although if he'd checked, he'd have found the keysafe code on the system, kindly put there by another officer).

    He came round to the home where I was and popped in to see Dad. He was very kind about it all. He told me that as soon as I'd told him which home it was, he knew Dad was ok. Like all the locals, it was the "my neighbour's mum's friend lives there" etc.
     
  8. Rathbone

    Rathbone Registered User

    May 17, 2014
    2,264
    Female
    West Sussex
    Well that's a brilliant endorsement Petrina! Great to know he is so well cared for. X Love Shelagh:)
     
  9. Yes, it's a brilliant endorsement.

    How awful, though, that Dad should be so worried about not being able to find Mum that he called 999. (I assume that's why he called because one of the things he'd said when we'd spoken was something like if she didn't come home, maybe we should call the police.)

    He'd forgotten when I got there, though, and didn't wonder why the policeman was there, but then I introduced him as the beat bobby just popping by to make sure everything was ok.

    As I type this, I think I'm going to fill a weekly calendar with fictitious events, meetings and supermarket opening times, so that when he looks at it, he'll guess that Mum must be at the WI meeting or grocery shopping or whatever. I think if I print it nicely, he will think it's a community newsletter so won't suspect it's fake or wonder why it's not in Mum's handwriting.
     
  10. Rathbone

    Rathbone Registered User

    May 17, 2014
    2,264
    Female
    West Sussex
    Oh that sounds like a great idea and is a wonderful, caring thing to do for him. If you are happy with it, he is sure to be so too. Good luck and loving thoughts. X Shelagh:)
     
  11. Sheepteach

    Sheepteach Registered User

    Sep 4, 2011
    161
    Somerset
    Petrina, on the thankfully sporadic occasions when Dad has dialled 999 re Mum, they always contact me. The first time it happened they sent an officer to his house who contacted me. I explained that Dad was a vulnerable adult with dementia and also deaf - and they have linked my number to his home number as a contact. Could you arrange something similar?
     
  12. They've got the details now. I'm lucky the local team is very understanding.
     
  13. warydistantsong

    warydistantsong Registered User

    Jan 6, 2015
    3
    Manchester
    I'm sorry to hear about what you and your Dad are going through!
    I'm dealing with a similar situation with my gran. Her son (my uncle) passed away four years ago suddenly which is when the Dementia started. So she recently started asking about John and saying he's not well that we should go visit him to basically anyone that called. Nobody was even kind of aware of how fast this Vascular Dementia is progressing until then that were outside of the daily life. So this was very upsetting for her friends and family.

    I moved in with her two months ago and she was still stuck on it, and it was hard to determine what was the correct response because she was very empathetic before the dementia and so much more now. So she could see the sadness on my face no matter how hard I tried to smile.

    It got to a point where she was trying to go out in the cold to walk to my uncle's house where I figured out what to do, which may be able to work for you. I got a memorial leaflet from the funeral and handed it to her to read. and gently (like with one arm around and a sad smile) said Uncle John passed away Nan, don't you remember? I was afraid it would make her cry but it actually really helped calm her. She would just say Oh yes, isn't it terrible? and I would just say yes and hug her.
    I also showed her a photo of the gravestone where her mother, her husband and son's names are engraved, reading it and seeing helped jogged her memory for a bit. I kept doing it for about a week (cause she was asking at least once a day), and she finally got that out of her head. (at least for now anyway.)

    But as you know all those with dementia are different and what could work for some might not work for all. Sometimes it is simpler to just go with it.
    Wish you the best.
     
  14. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    #14 Solihull, Jan 7, 2015
    Last edited: Jan 7, 2015
    Benrese, what beautiful thoughts about your Dad's calmness. I feel that my Mum is in this zone in her care home. The warm sitting room with comfy chairs, TV in background, cup of tea (usually gone cold) and some company when they drift in & out of napping. My only problem is that when I visit I am beginning to think that I am interrupting her calmness and the old questions start going round her head- where is your Dad? What happened to .....etc & how many children have you got? I can't stop visiting but it does make you think x
    Sue
     
  15. I'm starting to visit the care home less often. I had known for a while that Dad didn't remember how often he saw me, but even so, it's not easy to gradually withdraw. I think I can actually be of more use there on the phone as needed to make reassuring noises than simply going in every day as a matter of course.

    A visit may be forgotten a few minutes later and may not be when needed, but a voice on the end of the phone is there when needed and can provide rapid reassurance.

    But I'm going to have to rehearse lots of stock phrases that imply, but don't say, where Mum might be.
     

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