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Should i tell mom about her daughter's death ?

Nadya19

Registered User
Apr 6, 2021
12
0
Mom has vascular dementia. She was caring for my sister with chronic disease for last few years until 2 years ago her dementia became so bad I moved in and started caring for mom. My sister passed away at the age of 33 in January..she was my only and close sister and I'm in so much pain. What has been even more difficult is that mom was feeling really bad these months and we were not able to tell her. One of her doctors said not to tell her, the other one said try to tell her when she is better. Mom asks about my sister all the time. I feel like she is more confused. Once she caught me looking at my sister's photo and she became sad saying:"she has not seen her long time." Before she would see her every other day. Sometimes in the evening she starts asking about her and demanding go and see her because sister is scared on her own. When my sister was in a hospital and my mom found that- I was on video with sister and she tubes in her nose and mom came in..when mom saw my sister's face with tubes , she became so agitated and started panicking and being relentless with worry. So i had to turn off the camera and lie to her and tell that sister is okay and with cousin now.. I was so scared to tell about her death.. so i did not tell. But I feel that mother instincts are there and she is feeling something. She is more confused. In the evening she is rummaging through her wardrobe looking for something , looking confused and crying. Before she immediately would go to bed. Last night she was standing next to the front door saying that she is hearing voices and those people saying that they took away my sister. And my sister is scared. She was having hallucintaions. I can see that she feels something is wrong but she doesn't understand what. But I cannot imagine telling her as i have seen how she panicked when my sister was ill..Shall I tell her or not ? Mom is 63 years old if that's helpful. We do not have any other relatives so decision is on me and I have to deal with consequences.
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Hi @Nadya19

Sadly my sister passed away on New Years day this year and I made the decision not to tell my mum, now in late stages of dementia as it would be difficult for her or anyone with moderate dementia to process, and there is a risk of them becoming stuck in what we call a loop -they repeatedly remember the news which can be distressing. It very much is down to how you think your mum is now and if the news would benefit her or be a burden to her. its difficult to advise either way, but if the news would be more destructive than of benefit then I wouldn't tell her.
 

Nadya19

Registered User
Apr 6, 2021
12
0
Hi @Nadya19

Sadly my sister passed away on New Years day this year and I made the decision not to tell my mum, now in late stages of dementia as it would be difficult for her or anyone with moderate dementia to process, and there is a risk of them becoming stuck in what we call a loop -they repeatedly remember the news which can be distressing. It very much is down to how you think your mum is now and if the news would benefit her or be a burden to her. its difficult to advise either way, but if the news would be more destructive than of benefit then I wouldn't tell her.
My condolences for your loss ((...i also decided that I won't tell her as after caring for her for 2 years I know intuitively that it will make her worse. She will not be able to bear so much pain. I'm in a lot of pain I cannot imagine hers. But the thing is as time passes she asks more and more about my sister and I fell like she is having suspicions that something is wrong..she talked/saw her almost everyday.. and she is more confused. So I started doubting whether I made the right decision of not telling her..her mother heart feels something is wrong. But in my mind I realise she won't be able to process it..thanks for your reply..
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
My condolences for your loss ((...i also decided that I won't tell her as after caring for her for 2 years I know intuitively that it will make her worse. She will not be able to bear so much pain. I'm in a lot of pain I cannot imagine hers. But the thing is as time passes she asks more and more about my sister and I fell like she is having suspicions that something is wrong..she talked/saw her almost everyday.. and she is more confused. So I started doubting whether I made the right decision of not telling her..her mother heart feels something is wrong. But in my mind I realise she won't be able to process it..thanks for your reply..
I think it might be best to come up with a love lie, something like she has had to leave quickly for a new job and doesn't know when she will be able to return, but she sends her love. I had a difficult time when my dad died with mum, because she was at that stage of being able to comprehend and had awareness in the early part of her dementia. It was very difficult having to repeat that her husband had died, but she was able to absorb that information and eventually came round to it, I wouldn't be able to do that now, it would be devestating on top of a condition that has made it very difficult for mum to make sense of her world. But mum has also moved on with her dementia to a point where family have become vague distant and fragmented parts of her memory -sadly
 

Nadya19

Registered User
Apr 6, 2021
12
0
I think it might be best to come up with a love lie, something like she has had to leave quickly for a new job and doesn't know when she will be able to return, but she sends her love. I had a difficult time when my dad died with mum, because she was at that stage of being able to comprehend and had awareness in the early part of her dementia. It was very difficult having to repeat that her husband had died, but she was able to absorb that information and eventually came round to it, I wouldn't be able to do that now, it would be devestating on top of a condition that has made it very difficult for mum to make sense of her world. But mum has also moved on with her dementia to a point where family have become vague distant and fragmented parts of her memory -sadly
Thanks for your advice!that is what i do now..tell her she is gone to another city and is doing fine..
 

Nadya19

Registered User
Apr 6, 2021
12
0
So for over a week now mom every day had been asking about my sister throughout the day. It has been about 4 months she has not seen her. Before my sister has been living with her all her life. She never left home..only the last year she was living separately but would call or see her at least every other day. And as my mom was caring for her ( my sister had chronic illness ) I think she has this deep sense of attachment. I can see she is more anxious and agitated. I have been lying to my mom and saying for the last few days that my sister is fine and have left to another city for treatment. To which mom replied today that no it is not true. Mom has been telling me "I have not seen her a long time". In the morning today she was calm and content eating her breakfast. Then when we were finishing she asked:" where is your sister?" In another city mom was my answer. She said no. I tried to distract her. She became anxious and told me she wanted to see her. And immediately darted to the door. I distracted her by taking her for a walk. But when we came back she told:" dear we have lost your sister. Where is she ?"..she was walking outside perplexed , confused and talking to herself..i heard her saying to herself: "(my sister's name ) where are you ?"..her typical behavior when she is anxious constant walking...then in the afternoon she became a little calmer but when a friend came and my mom started telling her about her youth and mentioned her two daughters when they were little , after she mentuoend the name of my sister she immediately turned to me and asked again where was my sister and after my reply ..anither question :with whom she was ?then she became upset and agitated...i'm afraid mom on some subconscious level is missing her and confused because they have never been separated for such a long time and maybe in her normal moments might realise that something is wrong with sister without me telling her. They were so close : ( I wish there is any way I could help her and ease her anxiety. We walked today for 2 hours outside because she just could not sit home as she was so anxious..i feel it is getting worse as time passes as she is missing her more and looking for her more and more..im afraid my lies are not working ..
 
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nita

Registered User
Dec 30, 2011
2,075
0
Essex
Would the doctor be able to prescribe something for your mother's anxiety @Nadya19 ? It sounds as if she has generalised anxiety anyway and it has fixed on your sister's absence. I know you might be hesitant to get something which might sedate her, but it may ease her distress. Could you talk the doctor or even (I know hard in these times) get a face-to-face appointment? Are you in touch with a specialist at the hospital perhaps? You need some advice as to what to do to help your Mum.
 

Nadya19

Registered User
Apr 6, 2021
12
0
Would the doctor be able to prescribe something for your mother's anxiety @Nadya19 ? It sounds as if she has generalised anxiety anyway and it has fixed on your sister's absence. I know you might be hesitant to get something which might sedate her, but it may ease her distress. Could you talk the doctor or even (I know hard in these times) get a face-to-face appointment? Are you in touch with a specialist at the hospital perhaps? You need some advice as to what to
Mom has been on 1mg Risperidone and 12.5 mg clozapine since January . Our GP psychiatrist just repeated prescription of what the previous doctor has given her when she was really bad previous summer. There was a period at the end of the year when she was on another drug prescribed by another private psychiatrist which did not work and mom was anxious. So I just went to a local GP doctor, who just asked what did she take before and what helped and since risperidone and clozapine helped before she just repeated that prescription. It helped mom to become calmer. But she also started sleeping all day. I reduced it to 0.5 mg Risperidone now only for about 2 months now. She felt better. Risperidone numbs her and I feel like there is a brief moment when she emerges from it -probably because 0.5 mg not enough ..that's when she processes what is happening and feeling anxiousn. I was planning to call her GP psychiatrist (on Monday now) but pretty much sure she will just say add up the dose of risperidone. (As she just asked me before what mom took and what worked and then just repeated that ). The private one insists on the drug that does not work even when I told her it does not work and makes mom restless. Funny when i called the local psychiatric hospital emergency line -the doctor on phone immediately asked about retlessness and told me majority of people complained on such side effect of that drug ..please forgive me for my initiatives with mom's drugs..anyway I will tell the doctor I have changed the dosage and took away clozapine . And maybe add it back of needed. But she just stops talking on 1 mg risperidone and clozapine and sleeping all the time..we Will see what her doctor will prescribe. thank you!
 

nita

Registered User
Dec 30, 2011
2,075
0
Essex
I don't think you are wrong to reduce the dose of risperidone if it made your Mum so drowsy - she could have been at risk of falls. I think that both risperidone and clozapine are anti-psychotics which would help with things like hallucinations. I wouldn't have thought they would double up on this type of drug, seems too much. It maybe she needs another type of drug for anxiety.

Some anti-depressants are useful for anxiety and she could always start on a low dose. My mother did occasionally take something like diazepam/Valium but they tended to make her sleepy. Is this the type of drug she was on before which didn't help? I think the Valium was useful when she had to go for a scan but otherwise not recommended long term.

I think it really needs to be a psychiatrist or other specialist rather than the GP who decides what to do. Was your mother diagnosed at a Memory clinic? Are you in touch with a community nurse? They can be helpful in relaying information to the doctor.
 

Nadya19

Registered User
Apr 6, 2021
12
0
I don't think you are wrong to reduce the dose of risperidone if it made your Mum so drowsy - she could have been at risk of falls. I think that both risperidone and clozapine are anti-psychotics which would help with things like hallucinations. I wouldn't have thought they would double up on this type of drug, seems too much. It maybe she needs another type of drug for anxiety.

Some anti-depressants are useful for anxiety and she could always start on a low dose. My mother did occasionally take something like diazepam/Valium but they tended to make her sleepy. Is this the type of drug she was on before which didn't help? I think the Valium was useful when she had to go for a scan but otherwise not recommended long term.

I think it really needs to be a psychiatrist or other specialist rather than the GP who decides what to do. Was your mother diagnosed at a Memory clinic? Are you in touch with a community nurse? They can be helpful in relaying information to the doctor.
The drug she was on and did not help before was chlorprothixen. Yes my mom was diagnosed by psychiatrists and drugs are prescribed by them not gp. I have just realised that this is probably a UK based only forum as we are not based in UK at the moment. Here we have private psychiatrists (where you pay a lot of money ) and free local clinic psychiatrists who work on GP referral. The level of doctors I am in general not happy about. For example the private psychiatrist (who i was told is very good and probably the only psychiatrist who specializes in the field of dementia, she has her private memory clinic) kept suggesting chlorprothixen. And when I said it did not work her only another suggestion was to place mom in a private care home. The free psychiatrist tends to prescribe heavy meds which make her drowsy. I will ask for something additional, thanks for saying about valium. Definitely not good to just upper the dose of risperidone..
 

canary

Registered User
Feb 25, 2014
14,924
0
South coast
i feel it is getting worse as time passes as she is missing her more and looking for her more and more..im afraid my lies are not working ..
Your mum is stuck in a loop.
She wont remember your replies, but will remember how she feels and has probably picked up on the atmosphere and body language that something has happened to her daughter. Telling her the truth wont help, in fact it will probably make it worse as each time you tell her she will be devastated and will remember that feeling, even though she wont remember why, and will become even more anxious about her daughter.

I agree that medication is probably the way to break this loop. Eventually she will forget the feelings and the loop will break, but this is a tough time for you as you are also grieving for your sister.

BTW, this forum isnt exclusively for people in UK - we have people from many different countries, but its probably best to put on your profile which country you are in as otherwise people naturally assume that you are in UK. You might also find that another member in your country can offer advice.
 

nita

Registered User
Dec 30, 2011
2,075
0
Essex
@Nadya19 I looked up the drug you mentioned and it doesn't seem to be one used in the UK - I know quite a bit about anti-psychotics and I'd never heard of it. It's an old one and seems to have a lot of serious side-effects so you were right to steer clear of it.

I did think you were in the UK so not sure about the health system in the country where you are. Is there any help in the form of social care like day centres - somewhere you Mum could go when things open up (depending on the situation in your country)? This may help take her mind off her anxieties.
 

nita

Registered User
Dec 30, 2011
2,075
0
Essex

Nadya19

Registered User
Apr 6, 2021
12
0
Your mum is stuck in a loop.
She wont remember your replies, but will remember how she feels and has probably picked up on the atmosphere and body language that something has happened to her daughter. Telling her the truth wont help, in fact it will probably make it worse as each time you tell her she will be devastated and will remember that feeling, even though she wont remember why, and will become even more anxious about her daughter.

I agree that medication is probably the way to break this loop. Eventually she will forget the feelings and the loop will break, but this is a tough time for you as you are also grieving for your sister.

BTW, this forum isnt exclusively for people in UK - we have people from many different countries, but its probably best to put on your profile which country you are in as otherwise people naturally assume that you are in UK. You might also find that another member in your country can offer advice.
For the last two days mom was her old self. She was not anxious or agitated. And she was very cunning. Yesterday she asked about my sister and I told her she is in another town for treatment. She was quiet and thoughtful but did not look convinced. Then she asked a few times during the day again. Today in the morning. She asked me to go to our old house- my sister was living separately last year. And when I asked her "why?" she did not want to say the reason ,( she thought my sister was there) because she knew I would again tell her the story about some other town my sister left to.. so mom just said" I just want to go there"..she wa asking for almost half an hour :"let's just go". Finally after my many "why do you want to go there "..she said "because your sister is there "..she remembers that sister used to live separately in the last year in that house and I think remembers me saying excuses..so trying to be cunning to find a way to see my sister
 

Nadya19

Registered User
Apr 6, 2021
12
0
@Nadya19 I looked up the drug you mentioned and it doesn't seem to be one used in the UK - I know quite a bit about anti-psychotics and I'd never heard of it. It's an old one and seems to have a lot of serious side-effects so you were right to steer clear of it.

I did think you were in the UK so not sure about the health system in the country where you are. Is there any help in the form of social care like day centres - somewhere you Mum could go when things open up (depending on the situation in your country)? This may help take her mind off her anxieties.

I tried to contact her doctor today to ask about anti anxiety meds but could not reach out so will try tomorrow. Thank you for the factsheets @nita !

Yes that drug is definitely a no no ..but the private psychiatrist (whose appointment costs a lot of money by the way )insisted just on that drug and she was so against risperidone. Mom is so much better on little dose of risperidone..risperidone was prescribed by a free psychiatrist from local GP.

Because of the spring her condition is a bit worse. She is back to being scared to be left alone. so i I definitely have to ask for additional anti anxiety meds..cannot leave anywhere these days..I had to leave for 3 hours today and lock her and when I was back she was outside of the house. When i asked her how did she get out. She said she jumped off the window. And our window is very high from the ground. Luckily no breaks just some bruises..this happened last year too ..need to be careful not to leave her alone. Looking for carer now to be with her when i need to go out. Luckily I'm on distance work due to lockdown so mostly can be with her . We have private daycentres I heard for people with dementia but all now closed because of the lockdown.. also as I understood from google search on governmental social services help- the help is very small so i will have to get support from private centres/carers.

Regarding natural methods to calm my mom - do not always work but work sometimes: long walks, eating apples :) , having guests in the house for tea , looking at little children playing, eating out in a cafe..regarding apples-i rmember my sister told me when she wanted to have 30 min of peaceful time during mom's anxious periods she would give her an Apple. I do the same now.
 
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Nadya19

Registered User
Apr 6, 2021
12
0
If it wernt so sad youd laugh........
It does sound like the loop is beginning to break, though.

That is also i know she knows something is wrong and she does not believe me..Today I did thousand things to distract her ..and finally it worked. But my heart breaks to pieces every time she asks about my sister.

I just hope she will stop asking about her..
 

Angeladadsgirl

New member
Apr 11, 2021
4
0
Hey sorry for what your going through. I'm currently looking after my dad. His closest friend died recently, she was always cooking for him and making him laugh. We took the choice to tell him but we done it as if we was telling a child. He responded with okay but she'll be there the same time tomorrow won't she. Two months we had him asking and he just seemed to think she was ill and would be back when better. It wasn't until her funeral that he realised and he cried but then he somehow got everyone dancing because he thought she deserved a party instead. Thankfully everyone was understanding and went along with it and every one was smiling.

Only you can truely know if she has the capability to understand the meaning of passed away. I believe they do understand inside but the illness just doesn't allow them to process it correctly.
 

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