‘I’m not happy’

[father ted]

This is what Mum has said the last few times I’ve called her on the phone.

I don’t even know why I am posting this thread as there are so many on the same theme on this site, I know because when I need reassurance that my despair and sadness at putting Mum in a care home are common emotions I seek those posts out late at night to try and convince myself rationally that I am not alone. And it does help, for a short while.

Today I visited Mum with my daughter( she is adult but has a physical and learning disability- emotionally she is like a 9 year old). My Mum was a very good Grandma and still wants to be but it so upset me when she repeatedly asked me why she can’t come home. I made excuses, talked about the virus, that no one can go anywhere, she isn’t strong enough etc. She turned to my daughter and said ‘you want me to come home, don’t you?’ and of course my daughter said ‘yes’.
With this Mum really went on the offensive. ‘Why don’t you want me anymore’, ‘I am so unhappy’, ‘I wish I was dead’. It’s hard for me to hear and I was upset for my daughter, although she said she was upset for me!
It is the most awful thing when someone you love tells you they are unhappy and it is within your power to change it ( I know Mum wasn’t happy living with me towards the end. I knew she still loved me but the AD changed her perspective on everything and so I increasingly became the enemy as I tried to keep regular mealtimes for her, medication at prescribed times and not when she felt like it, laundering her clothes regularly etc). This latest development I am finding so hard and I really don’t feel like visiting for a while as it upsets both me and Mum but then I feel I am her only outlet- if she can’t say those things to me who can she speak to?

 

[marionq]

Is it possible you are a trigger for those feelings and they are dormant when you are not there? If she had loved being at home with you and you were all coping that would be a different story but it wasn’t working for you all. This way you can cope at home and she is being looked after. It’s tough but it’s realistic.

 

[AwayWithTheFairies]

You awful person, laundering her clothes and making her take medicine!!

I wouldn’t worry about posting, that is surely the point of this place? Maybe she only thinks of or says those things to you? Maybe ask the Carers how she is when you aren’t there, or spy ie. on the CH’s Facebook. So many people seem to say they find out their LO only complains when they are there. Sees to be a common cross to bear.

My children cried when I dropped them at nursery and complained they were utterly friendless at school, but some undercover work proved beyond doubt that was all for my ears only and not at all true!

I just saw some advice about guilt- save it for when you have done something bad, like carelessly run over a dog or willfully robbed a bank. You can feel regret, sad, disappointed, angry etc but guilt is not the right thing to be dishing out to yourself right now. Take care.

 

[Lawson58]

My friend's mum complains bitterly that he has put her 'in prison''and says the same thing about wanting to be dead etc.

As I get older, I sort of get it that many people in my age bracket are aware of their mortality and if there was a choice about living in a care home or not, why would you choose that? You wouldn't because you know where that bus stops next.

You say that it is in your power to change it but obviously she is where she is because of all the things you talked about, that it no longer was possible for you to give the care she needed.

You no longer had a sensible choice about what you had to do for your mum but now she s punishing you, undeservedly. That's what PWD do but you did your absolute best for her.

 

[AwayWithTheFairies]

Good on your daughter to see the truth on the occasion too, sounds like she is a wise one despite her own difficulties.

 

[canary]

Im afraid that your mum is no longer able to understand the reality of her situation.
She isnt happy where she is now, she wasnt happy when she was you and she wont be happy if you move her somewhere else, because the problem is her dementia and she will take that with her where ever she goes. Your mum, however, is unable to understand that and thinks that if she went home then she would leave all the confusion of dementia behind, so she is looking to you to make everything better. You cant change her dementia, of course, so you can never make it better and the hard thing is that you are unable to explain this to her. All you have in your tool-box is love lies and distraction.

As @marionq says, it may be that most of the time she does not think this and is living in her own dementia "bubble" so it is only when she sees you that all these thoughts surface. Please remember that her thought patterns are not the same as yours. In my experience people with dementia do not generally censor their thoughts - if something comes into their mind they say it, so to think "if she cant say it so me who can she speak to" isnt actually what happens and if, by seeing you, she is regularly vocalising these thoughts (even unintentionally) it can simply reinforce them. It might be that to have a break from visiting may be the way to break this "want to go home" loop, especially if the visits are upsetting you both.

 

[Grannie G]

Hello @father ted

How often are you visiting? Sometimes it might be better to visit less frequently even if it`s likely to fill you with guilt.

You know your mum was unhappy at home and you know today she is as well as she will ever be so taking her back home is not the answer.

Have you asked the staff in your mother`s home how she is when you`re not there? If she is relatively contented, perhaps, as @marionq suggested you are a trigger for her to express her anger.

It`s such an upsetting situation for all of you. Hopefully in time your mother may become more settled in her environment. It happened with my husband more than I could ever have believed so it is possible.

 

[Sarasa]

Hi @father ted, sorry your mother was so unhappy yesterday but it seems to go with dementia, or at least a certain stage of it. When my mother moved to her care home two years ago every visit was a trial as she wanted to go home, and insisted I took her. If I couldn't slip away unnoticed she'd be standing at the lift screaming about how unkind I was.
No one moves a loved one into care on a whim, in my mother's case she was becoming a danger to herself and other at home and I wanted her somewhere where she could be looked after before something nasty happened, and she ended up in hospital or worse. Mum was also extremely unhappy at home, something she forgot when she was wanting to go home. In the end I only visited when I knew an activity was going on that we could both enjoy and I slipped away when mum went to the loo or to lunch. Then Covid happened and I haven't been able to visit much until recently. Now mum is much happier, thinks of home as her parent's place in the 1930s, and visiting is easier in some ways, but more difficult in others as conversation isn't really possible anymore.
As for your daughter saying 'yes', next time I'd follow that up with an excuse as to why you'd love your mum to come home, but there is some reason why it can't happen yet. I know it's a lie, but it's a 'love lie' and if it calms your mother down that the important thing.
Keep posting, this site is such a good place to offload those difficult feelings that caring for a loved one with dementia throws at us.

 

[father ted]

Thank you all so much for your responses. Of course what you all say is true. My rational head knows it - but when dealing with human relationships you can’t always be rational and of course when dealing with someone who has been around you all your life and protected you it is hard to ignore. Sometimes Mum is so vehemently adamant and insistent that she can do things when it is obvious she can’t it STILL makes me doubt myself. Yesterday when our visit ended and the carer came to collect her she suddenly switched to thanking us for coming, was all smiles, chatting away as our half hour visit was pure joy when in reality she was close to tears and I was watching the clock, willing the 30 minutes to go faster.

Thank you again. X