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Mum has MCI, one of her children is terminally ill. Should she be told?

bb59

Registered User
Jan 2, 2021
13
0
Happy New Year everyone.

My mum has a diagnosis of Mild Cognitive Impairment (2019) and her condition has deteriorated considerably in 2020, not helped at all by the isolation of lockdown. She has been referred back to the Memory Assessment Clinic and is waiting for an appointment. She is able to live independently, albeit with increasing levels of support, but her short term memory is very poor.

Unfortunately, one of her children (my sister) is terminally ill and is not expected to survive more than a few days.

My dilemma is, should she be told? We are in Tier 4, so visiting is restricted to one relative (and my mum could not go on her own), I am shielding until 1 Feb (at least) so, according to the advice, should stay at home and therefore could not provide comfort for her, hug her etc etc or stay at her house overnight. My instinct is that she has the right to know, but my head is telling me otherwise.

I'd be very grateful for any advice on how to tackle this.

Many thanks.
 

MartinWL

Registered User
Jun 12, 2020
557
0
A terribly sad situation. If her congitive impairment really is mild, my choice would be to tell her, but it is a very personal decision. Could another relative accompany your mum on a visit to see her? Visiting the terminally ill is permitted in Tier 4 so no legal worries but if you are shielding protecting yourself is important. Ideally a young healthy family member should take her, if she is denied this last chance to say goodbye she may resent it. There is no right or wrong in this, whatever you do nobody could criticise you.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,079
0
Nottinghamshire
Welcome to DTP @bb59

I'm sorry to hear about your sister I don't think there's a right or wrong answer but you say your mum's short term memory is very poor so she's very likely to forget that she's been told the awful news about your sister and I don't think she'd remember if she went to say goodbye. Would your mum understand that she was going to say goodbye to her daughter, would she even recognize her if she's been changed by illness?

My instinct would be to say nothing unless your mum asks about her, especially now while you can't give her a hug and comfort her in the normal way.

Also if you do need to tell your mum only do it once as, if she's forgotten, she's going to grieve as if it's the first time every time she's told. I think it's kinder not to mention it and let your mum have happy memories of your sister if you can.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,394
0
Kent
Hello @bb59. Welcome to Dementia Talking Point. I`m sorry it is such a bad time for you.

How long is it since your mother has seen your sister? If your sister is a regular part of your mother`s life, will she be aware of her absence?

If your mother and sister haven`t been in each other`s company for a while and she doesn`t mention her, I wouldn`t say anything. If your mother keeps asking about your sister perhaps you could tell her she is very poorly.
 

bb59

Registered User
Jan 2, 2021
13
0
Thank you very much for your reply Grannie G. It will be about 6 months since my mum has seen my sister. She does live nearby and was visiting regularly with shopping etc during the first lockdown, but had to stop this around the end of June as she fell ill. I took over visiting and shopping at the beginning of August, once shielding finished.

My mum has mentioned her only once or twice since then and I have told her that she is not very well and then directed the conversation on to another subject.
 

Dimpsy

Registered User
Sep 2, 2019
1,644
0
How does your sister feel about seeing her mum, maybe for the last time?
Would it bring your sister comfort or cause your sister (and mum) distress.
A terribly sad situation for everyone.
 

bb59

Registered User
Jan 2, 2021
13
0
A terribly sad situation. If her congitive impairment really is mild, my choice would be to tell her, but it is a very personal decision. Could another relative accompany your mum on a visit to see her? Visiting the terminally ill is permitted in Tier 4 so no legal worries but if you are shielding protecting yourself is important. Ideally a young healthy family member should take her, if she is denied this last chance to say goodbye she may resent it. There is no right or wrong in this, whatever you do nobody could criticise you.
Thank you very much Martin. A year ago I think I would have told her, as the MCI was mild and I would have been able to be with her to help her. However, her condition has deteriorated significantly over the last 9 months or so, hence the request for her to be referred back to the Memory Assessment Clinic and I believe that if she was able to visit, she would not remember it 5 minutes later.
 

bb59

Registered User
Jan 2, 2021
13
0
Welcome to DTP @bb59

I'm sorry to hear about your sister I don't think there's a right or wrong answer but you say your mum's short term memory is very poor so she's very likely to forget that she's been told the awful news about your sister and I don't think she'd remember if she went to say goodbye. Would your mum understand that she was going to say goodbye to her daughter, would she even recognize her if she's been changed by illness?

My instinct would be to say nothing unless your mum asks about her, especially now while you can't give her a hug and comfort her in the normal way.

Also if you do need to tell your mum only do it once as, if she's forgotten, she's going to grieve as if it's the first time every time she's told. I think it's kinder not to mention it and let your mum have happy memories of your sister if you can.
Thank you Bunpoots, yes, her short term memory is very poor and I don't believe she would retain any memory of visiting or being told. I don't think she would be able to understand what was happening or where she was.
 

Veritas

Registered User
Jun 15, 2020
75
0
@bb59
What a very sad situation you are all in -
My first thought was to ask what your sister would like, but perhaps she's no longer able to express a view?

Although your mother's short term memory is so poor, there is a danger in assuming she can't make some sense of what's happening. Whatever you do, it's sounding likely that 'love lies' will be the way to go - rather than distress her anew every time she forgets and asks where your sister is. At some emotional/instinctive level, if she sees your sister she may understand more than you expect, even if she forgets the fact of a visit. If you do decide on a visit I'd make sure that whoever goes with her can whisk her away calmly and kindly if it all gets too difficult. Do you have access to specialist palliative care people who could advise you?

I hope you are being supported to find a way for you to say goodbye to your sister too, if you are unable to visit personally given your need to shield. My sympathy to you and your family -
 

bb59

Registered User
Jan 2, 2021
13
0
How does your sister feel about seeing her mum, maybe for the last time?
Would it bring your sister comfort or cause your sister (and mum) distress.
A terribly sad situation for everyone.
Thank you Dimpsy, unfortunately, my sister is not able to communicate her wishes, although I'm absolutely certain that she would not want mum to suffer any distress.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,837
0
66
Toronto, Canada
I was in a similar situation. My mother had a brother and a sister die when she was in the mid-stage of her disease. She would have understood at the time of being told but would have forgotten afterwards. So my sister and I decided not to tell her. We felt the distress would be in excess of the benefit. But that was our situation and decision.
 

MartinWL

Registered User
Jun 12, 2020
557
0
Thank you very much Martin. A year ago I think I would have told her, as the MCI was mild and I would have been able to be with her to help her. However, her condition has deteriorated significantly over the last 9 months or so, hence the request for her to be referred back to the Memory Assessment Clinic and I believe that if she was able to visit, she would not remember it 5 minutes later.
Fair enough, it does sound like dementia rather than just MCI
 

bb59

Registered User
Jan 2, 2021
13
0
Fair enough, it does sound like dementia rather than just MCI
Hello Martin, yes, I think that will be the diagnosis from the Memory Assessment Clinic. I had a telephone consultation with them a couple of weeks ago and detailed all the things that she was able to manage at the time of the initial diagnosis, but could no longer do and they were pretty certain that her condition had moved a fair way along the scale.
 

bb59

Registered User
Jan 2, 2021
13
0
@bb59
What a very sad situation you are all in -
My first thought was to ask what your sister would like, but perhaps she's no longer able to express a view?

Although your mother's short term memory is so poor, there is a danger in assuming she can't make some sense of what's happening. Whatever you do, it's sounding likely that 'love lies' will be the way to go - rather than distress her anew every time she forgets and asks where your sister is. At some emotional/instinctive level, if she sees your sister she may understand more than you expect, even if she forgets the fact of a visit. If you do decide on a visit I'd make sure that whoever goes with her can whisk her away calmly and kindly if it all gets too difficult. Do you have access to specialist palliative care people who could advise you?

I hope you are being supported to find a way for you to say goodbye to your sister too, if you are unable to visit personally given your need to shield. My sympathy to you and your family -
Thank you Veritas, unfortunately, my sister has now moved to end of life palliative care and I believe that a visit would be too distressing for my mum.
 

bb59

Registered User
Jan 2, 2021
13
0
I was in a similar situation. My mother had a brother and a sister die when she was in the mid-stage of her disease. She would have understood at the time of being told but would have forgotten afterwards. So my sister and I decided not to tell her. We felt the distress would be in excess of the benefit. But that was our situation and decision.
Thank you Joanne. Did your mother ask about her brother and sister at all in the days/months/years after their passing?
 

Duggies-girl

Registered User
Sep 6, 2017
2,248
0
I know it's different but my dad was diagnosed with terminal cancer not long after he was diagnosed with alzheimers and he immediately forgot. I reminded him on the odd occasion such as appointments but other than that I would not mention it too him as there seemed little point in keep reminding him. I think it affected me more than him. I probably wouldn't tell her.

You know your mum best, would she retain the information and if she did would it worry her all the time. Sorry you are in a difficult position at such a sad time.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,837
0
66
Toronto, Canada
@bb59 I don't recall if she did ask about her brother and sister. She did ask about her parents a lot and I would assure her they were fine, the same as always. This was true because they both died in 1970. She was asking for them 40 and more years later.
 

bb59

Registered User
Jan 2, 2021
13
0
I know it's different but my dad was diagnosed with terminal cancer not long after he was diagnosed with alzheimers and he immediately forgot. I reminded him on the odd occasion such as appointments but other than that I would not mention it too him as there seemed little point in keep reminding him. I think it affected me more than him. I probably wouldn't tell her.

You know your mum best, would she retain the information and if she did would it worry her all the time. Sorry you are in a difficult position at such a sad time.
Thank you Duggies-girl, her short term memory is so poor now that she would be unable to retain the information for more than a few minutes. Something unspecific relating to my sister might stick in her mind, if my sister was mentioned, but that "thing" would prompt her to keep asking about my sister. If I mention an appointment, for example, in advance of the day it is due to take place, she will ask many times about it, not remembering specifically what is going to happen, just that she has a perception that something is going to happen. I don't tell her about appointments etc now until just before we are due to set off as the fact that she cannot remember the specifics causes her a lot of anxiety
 

bb59

Registered User
Jan 2, 2021
13
0
@bb59 I don't recall if she did ask about her brother and sister. She did ask about her parents a lot and I would assure her they were fine, the same as always. This was true because they both died in 1970. She was asking for them 40 and more years later.
Thank you Joanne, your experience is very helpful to me.
 

canary

Registered User
Feb 25, 2014
14,328
0
South coast
Something unspecific relating to my sister might stick in her mind, if my sister was mentioned, but that "thing" would prompt her to keep asking about my sister. If I mention an appointment, for example, in advance of the day it is due to take place, she will ask many times about it, not remembering specifically what is going to happen, just that she has a perception that something is going to happen.
I have a feeling that you are right - the same thing would happen about her sister. She would not remember the specifics, but have a perception that something bad was happening, so she would keep asking.