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Am I doing the right thing ...

Cornflakegirl

New member
Nov 19, 2019
8
Hi all,

I posted a while back about my mum who has dementia (un-diagnosed because she won't see a doctor - gets nasty when I try and address her memory issues). She repeats, has mood swings, hallucinations (see's my dad quite regularly - he died 3 years ago).

She has good days and bad and I've been dealing with it for the last few years as best as I can with a 7 year old, my partner and I are freelance and both work from home so I usually go and see her at least 3-4 days a week for 2 hours at a time, plus I deal with all her bills, shop for her and pick up her medication (she also has osteoporosis and osteoarthritis and is very frail.)

Since the Corona lockdown I have not been around to her house obviously - especially as my son only stopped school 2 weeks ago and children are prime-germ carriers. My partner has been dropping off food for her - unfortunately has to enter the house as she can't carry shopping and also because she forgets to empty her bin and leaves it so long she can't lift it - it starts to overflow. But he drops shopping, empties bin then leaves. I haven't been as I don't drive and also I know if I want she would expect me to go in and chat for a few hours and then I'll be putting her at more risk.

So she's been in a surprisingly good mood the last two weeks and I've been amazed how well she was coping -although my dead father has made a few more guest appearances :( . So just spoke to her today and said Charlie my other half would be dropping shopping off and she said "and will you come later". I said I wasn't supposed to because the government had said that we're not supposed to visit people or family in other homes as it puts them at risk. She said "but I've seen you in the last few days" (she hasn't obviously) and i said well not in the last week as not allowed - better for her to think it's been one week and not two.

Anyway - my question is, am I right to not go round or am I doing her more harm than good? Or do I keep going as it is for as long as I/she can stand it and keep phoning her once or twice a day. My friends think I am right to stay away but they don't have parents with dementia so wanted opinion from those who know.

Just to put some context she lives at home and still manages day to day - gets up, gets dressed, makes toast/simple meals for herself. Puts her make-up on, cleans the house. And her memory issues flik-flak wildly from one day, one month to the next. I guess I can feel she's slipping into a bad phase and I don't know what to do for the best.

Sorry very long winded post - am sure that you've all got similar problems and hope you and your families are all well.


Hx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,049
Yorkshire
Hi @Cornflakegirl
I think you have your answer in your post

"So she's been in a surprisingly good mood the last two weeks and I've been amazed how well she was coping"

So let things be.... Your partner is popping in so you will know if there's a change in her situation
 

Cornflakegirl

New member
Nov 19, 2019
8
Thankyou for your reply - you're right I know. I just feel so guilty as she doesn't see a soul usually anyway apart from me and my son, partner and now she's seeing nobdy.

You're right - at the moment it's my issue not hers. I need to protect her health and hope all this passes quickly.

Thanks for you reply xx
 

lemonbalm

Registered User
May 21, 2018
179
This is very hard. The best you can probably do is keep speaking to her by 'phone and perhaps add an occasional treat to the shopping if you can. A home made card or some chocolate to let her know that you care. If you do go and struggle not to stay, it could cause some conflict which neither of you need. She may remember you visiting even if you don't, which would be good and you can play along with that. It is incredibly stressful, always waiting for the next downturn. I hope that your mum carries on with her good patch.
 

Cornflakegirl

New member
Nov 19, 2019
8
Thanks for you replies - since I last posted things got a lot worse. Mum has started me twice a day asking where my dad is, she is seeing him and also said a woman came in for a cup of tea the other day - she said the lady was doing sign language at the television, 99% sure a hallucination but got her to check her bag to see her purse was still there just in case.

Am feeling sick with anxiety as I don't know what the next phone call is going to bring. She's never been quite this bad before and these episodes are usually spaced out .... sometimes months before episodes like this.

I know she's getting worse because she isn't seeing me as she usually does. Am speaking to her on the phone for 1 or 2 hours a day but it's clearly not enough. Staying away is exceptionally hard - especially as when she's like this she has no understanding of while I'm not seeing her.

Hopefully today will be a better day.
Xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,049
Yorkshire
hi @Cornflakegirl
maybe your mum was watching a programme with signing, where the signer is added to the screen, they do these later at night or early morning

as I understand your situation, you both work from home, your son hasn't been to school for weeks, your mum doesn't have visitors and whoever does the shopping has no doubt been very careful .... so if you visit your mum now, the risk of the virus to either of you is very low

that said, your mum isn't getting worse because of anything else but the dementia ... though, yes, a change in routine has an effect

also, worth letting her GP know that she appears to be hallucinating more just in case a tweak of meds might help
 

Cornflakegirl

New member
Nov 19, 2019
8
Thanks so much for your reply - maybe I could go and see her then? Just so unsure as we live in London and the supermarkets and streets are still very busy so each time me or my partner go out or I pick up medicine at the chemists for her, am assuming we are at risk and therefore she would be too? Am so unsure of how high the risks are of shopping?

But yes my partner and I work from home so risk is reduced on that score and my son has been off school for 3 plus weeks now.

She's not on any meds. My dad died 3 years ago and I've been coping with it alone since then. I have tried to get her to go to the GP on numerous occasions but it just ends up in an argument and she says that I'm trying to say she's mad and that it's me who has memory issues and that I'm being horrible - so I can't get any help in that way - she simply won't go and it just causes problems if I try to talk to her about it.

She doesn't have any friends anymore and I am an only child so she is entirely reliant on me for company. Usually I go round 2 hours a day for 4 days a week and we often bring her over here at weekends - though that is tricky as my 7 year old can't engage with her anymore and so he and my partner end up going off and I sit with her for hours as she repeats the same stories.

You could be right about the sign language - a lot of the news reports at the moment have sign language on them don't they! She's on very strong painkillers for osteoarthritis too which I don't think help - they make her tired and I think some days she may fall asleep and have very lucid dreams.

I have a cough today so will give it a few days to make sure that doesn't develop into anything.

Thanks again for replies,

Stay safe x
 

canary

Registered User
Feb 25, 2014
12,189
South coast
maybe your mum was watching a programme with signing, where the signer is added to the screen
I was wondering that too. My mum often thought that things that she saw on TV were actually happening in her home.
It may be that she is not hallucinating as such, but confabulating - when the brain produces "false memories" to try and make sense of the bits and pieces that are still retained. Its something that is really common in dementia.
 

Louise7

Registered User
Mar 25, 2016
2,024
maybe your mum was watching a programme with signing, where the signer is added to the screen, they do these later at night or early morning
Nicola Sturgeon is using a signer during her daily coronavirus updates so I've been seeing this a lot during the various daily news programmes. It's possible that your Mum has seen this, and also that the current situation is making her more anxious/confused than usual because of what she is seeing on TV. Is she able to switch channels herself or could someone else set the TV to one of the channels that shows films, old comedies etc so that she is watching less news programmes? Difficult to get away from what's happening but some channels don't have regular news programmes/updates so may cause her less anxiety. Those with dementia also tend to pick up on other people's moods very easily, so easier said than done but if you or your husband are displaying anxiety when you see/speak to her this may well be adding to her anxiety, and as Shedrech has mentioned, a change in routine can also cause increased confusion/anxiety. I've found that if I show that I am worried/unhappy my Mum starts feeling the same whereas if I greet her with a 'happy,smiley' voice/face and act as if everything is fine and 'normal' she is more settled and happy. It's difficult for everyone at the moment but you can only do your best.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,049
Yorkshire
hi @Cornflakegirl
I appreciate that you are trying to honour your mum's wishes not to involve her GP ... though there's nothing to stop you writing to her GP giving full details of your mum's behaviour, your concerns and all you do for her ... the GP needs to know the full picture of your mum's situation to be able to treat her properly for any existing conditions and has to note on file any issues raised by family

then, if the GP notices anything they wish to investigate, they can contact your mum (possibly warn them that she may bridle at mention of memory problems) maybe under guise of checking her painkillers .... or invite her to an 'age related well woman check up' when restrictions are lifted
 

lemonbalm

Registered User
May 21, 2018
179
It is immensely stressful feeling solely responsible for your own mother's well-being, particularly when you have no idea what the next day/hour/'phone call will bring. You really need to take a breath and say to yourself " has anything really bad happened?" (say it out loud if feels good). Do it often. Most of the time the answer will be no. Occasionally, the answer may be yes but you will deal with it one way or the other. We are strong and cope with all kinds of situations we probably thought we would never have to or be able to. Hopefully the next call with your mum will be better. At present, you can say that you have a cough so can't visit but will see her soon. If you think, in the near, that there is something that you absolutely have to deal with, then you'll know what to do. It sounds as though you have a supportive partner, which is great. These times are often worse for us than they are for the one with dementia. We remember it all! You are strong. You are a carer. Warmest wishes.
 

Arobe1

New member
Jul 12, 2018
3
Hi, I’ve just joined this forum and I am In exactly the same position as yourself. My Dad died 3 yrs ago, I’m an only child, no help from relatives or her friends as my Mum closed her social circles. I have been visiting my Mum but making sure I keep 2 meters away I need to see her as she needs help with meds. My Mum has vascular dementia but she doesn’t know!!! I battled to get her to do a memory test for years, the GP referred her to memory clinic and I got her there fibbing that she was going to be assessed for a disability badge, she too has osteoporosis and chronic back problems, takes tramadol. The Dr was very good but didn’t do anything referred us back to GP and said priority is to make sure carer is ok nothing you can do for vascular. My Mum has terrible delusions, hallucinations, thinks my Dad has gone off with another woman, thinks other dead relatives are in the house, staying upstairs and taking keys she has terrible disturbed sleep due to pain and the dementia And this is becoming worse during lockdown. So I’m on here now searching for how to tackle these situations And I think I just need to reassure her. One absolute godsend I have done is installed a camera in the kitchen. I get a partial view as it’s behind a microwave as yet she hasnt questioned it, If asked I will say its part of the BT home hub if challenged. I can see when she is getting anxious and looking for dead relatives in cupboards, so I then call her, I do think she gets worse when a B12 injection is due, this was cancelled due to lockdown. It really is so hard trying to look after your Mum and be a Mum to a young family and work. Lots of love Alison x
 

Cornflakegirl

New member
Nov 19, 2019
8
Hi, I’ve just joined this forum and I am In exactly the same position as yourself. My Dad died 3 yrs ago, I’m an only child, no help from relatives or her friends as my Mum closed her social circles. I have been visiting my Mum but making sure I keep 2 meters away I need to see her as she needs help with meds. My Mum has vascular dementia but she doesn’t know!!! I battled to get her to do a memory test for years, the GP referred her to memory clinic and I got her there fibbing that she was going to be assessed for a disability badge, she too has osteoporosis and chronic back problems, takes tramadol. The Dr was very good but didn’t do anything referred us back to GP and said priority is to make sure carer is ok nothing you can do for vascular. My Mum has terrible delusions, hallucinations, thinks my Dad has gone off with another woman, thinks other dead relatives are in the house, staying upstairs and taking keys she has terrible disturbed sleep due to pain and the dementia And this is becoming worse during lockdown. So I’m on here now searching for how to tackle these situations And I think I just need to reassure her. One absolute godsend I have done is installed a camera in the kitchen. I get a partial view as it’s behind a microwave as yet she hasnt questioned it, If asked I will say its part of the BT home hub if challenged. I can see when she is getting anxious and looking for dead relatives in cupboards, so I then call her, I do think she gets worse when a B12 injection is due, this was cancelled due to lockdown. It really is so hard trying to look after your Mum and be a Mum to a young family and work. Lots of love Alison x
Hi Alison,

Hi Alison, my goodness I almost cried when I read your response - I could have written it! My mum found a note last week - it was a note that we found after my dad died - he'd written it in page of a book with all his financial stuff - he knew if he ever died mum wouldn't be capable of organising any of it - not because of dementia but because she never dealt with any financial stuff - he did everything. Anyway we found the note and it was lovely, said if we were reading it he'd 'Gone to be with Shelly' this was my sister who had died when she was 5 - i never met her. And went on to say that she'd been a wonderful wife etc.

Anyway - she's had the note since he died but had written on it "Where do you go at night - if you don't want to be with me lets get a divorce so I can find happiness with someone else". She'd obviously written it when she thought she's seen him and then he disappears - but forgot and so was convinced he'd been seeing another woman when he died ... or was unhappy in the marriage ... I had to convince her she'd written it so that she didn't think my dad was angry at her when he died. It's all exhausting isn't it.

I've made so many appointments to see the GP for myself (we go to the same GP now - i've made sure of that) so many times and chickened out at the last minute as feel so guilty and also she gets really nasty with me when I mention the memory issues. The stress has taken it's toll over the last 3 years, I've had shingle twice (I had it once before my dad died too for other reasons) and I've had panic attacks and palpitations.

I feel so bad for my 7 year old as he hears all this - sadly his other granny - my partners mum died last year and also had osteoporosis and dementia but was in a home so was easier in a way, also didn't live in this area. But all he see's is old people losing their minds.

He said to me around six months ago "Mummy when you get old I wonder if you'll think you're on a train when you're not like Granny or see dead people like Nanny" - my heart broke, I explained to him that not all old people get like that. But i feel bad as i know we could and he's an only child - we tried to have a second shortly after my dad died but it had Edwards syndrome and we lost him at 12 weeks. So much grief in 2017 and the last 3 years feel like an ongoing nightmare.

I don't think she'd take meds even if I convinced her to go to GP - she didn't want to for osteoporosis and refused to take them - then a month after we found out about it she forget she had osteoporosis and I had to tell her again and she was so upset - yet when she first found out she was fine about it.

Thanks so much for your reply - sending lots of love, please contact me any time you want a chat too - sounds like we're in a very similar situation. Can I ask how old your mum is if you don't mind? Was she showing symptoms before you dad passed away?

Heidi xx