• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can access this area by going to the Health and wellbeing forum >here< or you can directly access the area >here<.

How my mother has changed!

MorryLou

Registered User
Jun 19, 2017
64
Newcastle
I haven't been on the forum for a while. The last time was just before my own crisis of not knowing how I was going to cope with my mother who had recently been diagnosed with mixed dementia. The shock/grief/worry sent me into a flat spin and I had to take time off work to initially cope.
A year on and I'm much stronger, back to work and I have accepted the diagnosis, and there is a better routine now involving carers. But hey, how my mother has changed!
She sees me as a different person, describing me as being hard as nails to the carer (I'm so not!). She can't remember major family events and doesn't have much in the way of emotions one way or another. She can't read the papers, or follow storylines on TV and she can't make a decision on anything. She has to be prompted to take her meds, to eat and she resists showering saying she is always too tired. She sits and occasionally repeats the same story again and again about a dog she had as a child. I ask her about what I was like as a child and she can't say that much.
I try to involve her in everything, taking her out, going to family events but it seems like she gains little from it all now. The blessing is that she doesn't realise she is this bad.
The real bad bits are still to come and now that has caused me a fresh flurry of worry, how to cope, how and when will this end. I thought I had toughened up but now I'm not so sure. How do you prepare yourself for what is to come?
 

canary

Registered User
Feb 25, 2014
11,592
South coast
You sort of grow into it @MorryLou - one step and one day at a time. Im not sure that the really bad bits are necessarily at the end - for mum it was at the beginning, before diagnosis and while mum was trying to live "independently"

Dont try looking to far into the future - you may end up worrying about all sorts of things that never happen
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,030
Nottinghamshire
I remember having those feelings about my dad a year or so ago. I don’t think I ever managed to prepare myself for what was to come but I found that telling to people here who understand helped me to complete the journey.

I took a day at a time and, with the help of a good care agency and, in the last months a good carehome I muddled through.
 

Whisperer

Registered User
Mar 27, 2017
107
Hampshire
We all have a human capacity to worry about an unknowable future. My grandad use to say the things you worry about are not the problem, it is the things you never considered which arrive out of a clear blue sky. You sound like me about a year ago and as Bunpoots states talking to others on here is very useful.

Your mind can give you a new worry every day, get on top of one and another will be born. Try and let go of the anxiety, it is burning good emotional capital. Deal with what arrives, not what you fear might arrive. Look back how you have developed to date. Take some credit for what you have already done. You may make mistakes but you will learn from them. Aiming for perfection stores up trouble. Remember good enough will do. Now accept you are on a journey of being a carer but also self development. You will change and adapt. Are you the same person when the diagnosis was given to your mum? Me thinks not. Not a better person just a more experienced and wiser one. Hope those words make sense.
 

SKD

Registered User
As @canary says you do kind of grow into it. I too found the early stages very hard when Mum retained so much of her 'real' character but was trying to live independently. It was very hard when I realised she could no longer cope with family events and losing her ability to communicate has been heartbreaking. But it is one day at a time - this week I am hoping that we can move Mum to a new nursing home after a period in hospital and I am trying to focus on all the jobs that need doing. I still get very stressed and grieve for my Mum but try to remember that I have got through issues and solved problems before. Sadly dementia is always coming at you from an angle you don't expect.
 

patbryn

Registered User
Mar 22, 2019
81
Wales
Looking after mum one of the many things I have learnt is that there are things that must be done and things I felt should be done. I used to take mum out and then the day came when she was unable to go out but I still felt I should take her. So was I taking her out for her sake or my own? did I take her out just to make myself feel a better carer who was doing a good job? the truth is mum could care less if she is in or out so why bother taking her out, I know that sounds harsh but sometimes we can have a habit or projecting our feelings onto the PWD and then we can end up doing more than we need to do just to make ourselves feel better. We would feel far better spending the time short as it may be looking after ourselves, that makes us better carers. Regarding the future I try to never think about it because I wont be able to change it
take care everyone.
 

Cazzita

Registered User
May 12, 2018
537
Oh how I feel for you! My mum was diagnosed about 9 months ago at 80 and she has changed so much but so much more changing to do yet. The worse thing for me personally, is the double incontinence and all that entails, plus she won't bathe! :(
However, mum is a happy wee soul and thinks she is perfectly fine - it's the rest of us!
 

Ohso

Registered User
Jan 4, 2018
168
Morrylou, your post really struck a cord with me, l feel we are at the same stage. Eveeything you said mirrors my own mum.
My mum currently lives alone with carers and me visiting each day. It has taken me about 2 years to get to grips with all that this awful condition entails but also very aware that the future is uncertain and it really is one day at a time.
I never imagined that l would miss her repetative stories about one particular episode in her life ( l knew it word for word) but l do, now she sits and only talks about the moment, how she is feeling ( headache/tired)
I will follow your posts with interest.
 

MorryLou

Registered User
Jun 19, 2017
64
Newcastle
Hi All
Thanks for your useful comments and helpful advice. It is comforting to know that we are not lone and others are dealing or have dealt with what we are going through and can offer their words of wisdom. I try to not think too far ahead with the situation but at times it is difficult.
Yesterday I felt it was groundhog day! My mother has asked for several days now the same question!!!!! This doesn't fall under the repetition umbrella which I've got used to but is far more significant than that.....
She asked (again) why my sister in law had not any children? Well, I told her, it was because of the cancer she had. I said again that she had cancer twice and nearly died from the second lot and subsequent treatment left her unable to have any. 'Well no-one told me' was her reply!
I said that she was ill for a total of 5 years and we had been with her many times throughout her treatment. I told her about her 50th Birthday party (where we all stayed in a hotel) and she was bald. My mother started to cry, as she had done the day before that and the day before that......
how awful she said, then after a couple of minutes she had her 'half smile' on her face as though nothing had happened!
I am struggling with the fact that a big event of memories seems to have gone, but largely pointless ones remain. I felt myself go red in the face and I wanted to say more, but really what is so obvious is to say less.
I'm finding the communication bit so difficult. I have never been a person to 'tell fibs!' What do I say when she asks again, she didn't fancy having any??
 

canary

Registered User
Feb 25, 2014
11,592
South coast
She wont retain the memory about your SIL @MorryLou so every time you tell her it will be like the first time she has heard it. Unfortunately, she is retaining the emotional distress of the news and knows that there is something important about the fact that she didnt have children and keeps asking, round and round in a loop.
Its like when they keep asking about someone who has died and are devastated to be told the truth - each time

Truth is not always your friend with dementia. Love lies are call this for a reason - you tell them because you love them and dont want to distress them. I have also heard them called "therapeutic untruths" if this concept will help you.
Tell your mum that she didnt want children, or that it was sad, but it just didnt happen, that they left it too late, or anything else that will pacify your mum so that she is reassured and the obsession will fade.
 

Ohso

Registered User
Jan 4, 2018
168
Piggybacking this thread.
My brother died a couple of years ago and recently mum has asked me outright, 'Where is G*****'
I find it really difficult to answer, so usually flounder around and say something stupid like 'where do you think he is' ( in a gentle voice, not quite as blunt as it looks written down) before working round to telling her the truth, only because I am not quick enough with a 'love lie' so any suggestions will be grabbed with both hands ..
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,030
Nottinghamshire
Piggybacking this thread.
My brother died a couple of years ago and recently mum has asked me outright, 'Where is G*****'
I find it really difficult to answer, so usually flounder around and say something stupid like 'where do you think he is' ( in a gentle voice, not quite as blunt as it looks written down) before working round to telling her the truth, only because I am not quick enough with a 'love lie' so any suggestions will be grabbed with both hands ..
When my dad used to ask me about someone who'd passed on I'd often say they were with someone else that would be believed or they'd gone shopping and would be back soon.

When he asked about mum I'd tell him she was with her sister (also passed on) and hope that he wouldn't remember that detail. It was sort of true and dad always accepted it and it calmed him.
 

Ohso

Registered User
Jan 4, 2018
168
When my dad used to ask me about someone who'd passed on I'd often say they were with someone else that would be believed or they'd gone shopping and would be back soon.

When he asked about mum I'd tell him she was with her sister (also passed on) and hope that he wouldn't remember that detail. It was sort of true and dad always accepted it and it calmed him.
Thank you, I worry my mum is half way between remembering and not, so if I do tell her something like this that she will suddenly remember ( or work it out from my pained expression) and be offended that I have tried to tell her a lie

It is also still raw enough with me that I find it difficult to respond to without that expression ( and tears)

Also, the death itself isnt as upsetting to her than the fact that she doesnt understand how she could possibly have forgotten something so huge.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,030
Nottinghamshire
Thank you, I worry my mum is half way between remembering and not, so if I do tell her something like this that she will suddenly remember ( or work it out from my pained expression) and be offended that I have tried to tell her a lie

It is also still raw enough with me that I find itdifficult to respond to without that expression ( and tears)

Also, the death itself isnt as upsetting to her than the fact that she doesnt understand how she could possibly have forgotten something so huge.
This was why I decided to tell dad that mum was with my aunt (who died after mum and was like a second mum to me)

Their ashes are in the same crematorium so in a way they are together. If he'd remembered I'd have said that's what I meant... I had to then go to the kitchen quickly and make a cup of tea so dad wouldn't see I was upset.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,304
66
Toronto, Canada
@Bunpoots I used a similar tactic with my mother when she asked me where her parents were. I would tell her they were in St. Hubert, which is the town the cemetery is in. If she asked how they were, I would respond with "Same as always" which was true.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,030
Nottinghamshire
It's so difficult @Canadian Joanne to avoid telling outright lies while avoiding the painful truth. I will admit to outright lies when it came to some of the more trivial things that dad got upset about. But I could never tell him anything that didn't have a ring of truth to it when it came to departed family members.