Why Johnny Five?

[Johnny Five]

He was the robot in Short Circuit, the film, and that's how I think of Mum's dementia. Her brain is short circuiting.
By the way, I'm a woman, so Johnny may confuse.
We moved Mum into a home near me 4 months ago after it became clear she was no longer safe on her own.
The move was really hard and she changed her mind about moving every day up to and including moving day.
4 days later she begged me to take her home and I had to get my brother to drive up 75 miles to help calm her down and convince her to stay.
Since then things have settled somewhat but I've been unable to see her for a week as I've had a chest infection. She was very confused today and begged me to take her back to my home. I know "reasoning" is useless but I felt so helpless. She has always been difficult and manipulating and for that reason has not visited my brother's or sister's home for years. I know I could not look after her and my husband would not let me put her before my own health, (I've had nervous breakdowns in the past) anyway.
I was told today she had stripped off in the medical room on Fri and defecated on the floor. She would be horrified if she remembered it.
I'm now petrified of going to see her tomorrow as a carer had to prevent her following me out of the CH and Mum was threatening throwing herself off the roof.
The staff are thinking of getting her GP in to do a psychiatric assessment.
I salute each and every one of you caring for your loved ones. I feel so guilty for not wanting to bring Mum home but I'm scared I would snap and hurt her.
By the way, in 1 hour today I was apparently, Mum's daughter, sister and mother and she spoke to me making complete sense if I were her mother.
It's helped just putting this down in writing. In September, we were told Mum had liver cancer and I was relieved (THERE! I'VE SAID IT) but her GP had "jumped the gun" and we've just been told it's just liver cysts.
Sometimes I just want to hide under the bedclothes and stay there 'til it's all over.

 

[Izzy]

Good morning and welcome to TP.

I'm sorry to read about your mum. It sounds as if you are having a very difficult time.

I'm glad you have found TP and I hope it has helped to share your feelings here. I'm sure you will find a lot of help and support on the forum.

 

[Amy in the US]

Hello, JF (if I may call you that; I'll type out Johnny if you prefer!), and welcome to Talking Point. There are lots of lovely people here and loads of advice and support and information. I'm sorry to hear about your mother and the very difficult situation.

One of the nice things about being here is that people aren't going to judge you. I definitely know what you mean about feeling relieved when your mum received a diagnosis of cancer. I often think that my mother's death is the only thing that will bring me relief from this entire situation and that it would be easier if she were dead or had cancer or something, anything other than dementia.

So please know you're not alone and you're not a horrible person for thinking things like that. I hope you got some relief from writing it all out.

Please do your best not to feel guilty for having your mother in a care home. Could you genuinely provide all the care she needs, 24/7? Can you physically lift her and bathe her? Can you deal with her stripping off and defecating in the front garden? Can you keep her safe and warm and fed and deal with her medications and medical needs and the extra laundry and the delusions and so on? You are not a bad person if you say no.

On a practical note, don't let the care home think about calling in her GP for an assessment, INSIST that it happen right away. You can be polite and patient and PERSISTENT about this. (I am hoping you have PoA sorted.) They don't get to think about what they might do, they have to do what you tell them!

It also sounds like you visit your mum every day. You don't have to do that, especially if it agitates her. You could skip visiting for a day, or a week, or a month. She will be fine, and if the staff is not reassuring you about that, then they are not being supportive of you. You might try skipping a day's visit and calling them for an update instead. You might also try shorter visits, and have an exit strategy, which could include a member of staff if needed.

You might find that decreasing the number of visits, and/or the length of visits, gives you a little sanity back and allows you to deal with the other issues better (like the paperwork, the GP assessment, and your own life).

I haven't meant to sound bossy or unkind, so apologies if I have. You are not the only one with a mother with dementia who was difficult and unpleasant, so please take some comfort in not feeling alone. If you feel up to it, please return and let us know how you get on. Wishing you all the best.

 

[Canadian Joanne]

What a difficult situation you are in. I remember well when my mother was trying to go 'home'.

When your mother begs you to go home, say that it's up to the doctor, that she's in to build her strength up.

I would also ask for her to be checked for a UTI, which can cause a lot of confusion and odd behaviour.

 

[Shedrech]

Hi Johnny Five - so glad you have found us here on TP - you're right, it does help to write it all out - so keep posting
Amy in the US has said pretty much what I wanted to write.
You have clearly done so well for your mother, and now you need to do equally well for yourself - no guilt, please! Each time it even begins to appear remember:

it became clear she was no longer safe on her own

So you found a safe place for her.
Her behaviour proves that she needs to be in the home, you would not be able to support her as she requires in your own home. Time to let the staff take care of her.
Amy's right, you can't visit every day. You have a caring husband and the 2 of you have a right to a life together.
Maybe when you do visit, leave her at the start of a meal time or activity, so there is something to distract her and hold her attention - just pop out (maybe say to go to the loo), no goodbyes. And then go do something nice for you, so you have a distraction too.
I agree too, ask for the assessment ASAP - it will help the staff support her.
Best wishes