Advice please

[Beverley Judd]

Friday teatime mum started screaming and crying saying she wants to go home to her parents. We couldn’t let her out on her own for her own safety. Spoke to Dr and duty social worker. Dr gave us some tablets to calm her. We managed after 4 hours to calm her.
Today she wanted to go out so we said we would go to a garden centre. In the car she started screaming again saying she wanted to go home. She spat at me and was kicking the seats. We came home but she was also threatening to open the door. We have had to give her the medication.
I’m at my wits end and don’t know how to cope with this and I’m now frightened to take her out on my own in case she does it then.
Any ideas please?

 

[Chaplin]

Friday teatime mum started screaming and crying saying she wants to go home to her parents. We couldn’t let her out on her own for her own safety. Spoke to Dr and duty social worker. Dr gave us some tablets to calm her. We managed after 4 hours to calm her.
Today she wanted to go out so we said we would go to a garden centre. In the car she started screaming again saying she wanted to go home. She spat at me and was kicking the seats. We came home but she was also threatening to open the door. We have had to give her the medication.
I’m at my wits end and don’t know how to cope with this and I’m now frightened to take her out on my own in case she does it then.
Any ideas please?

Hello Beverley, wow your message has striking similarities to my mum on Thursday. Mum has been living with mixed dementia for around 7 years although only diagnosed as such around 5 years ago. She has been declining week by week but on Thursday evening I went to see her and my dad and the door was locked. Mum had been trying to leave so dad locked the door. When I got inside she was coming down the stairs with armful of clothes asking me to take her home. She was manic and as well as being scary it was incredibly sad too. After trying and failing to calm her and worried for her safety I called the GP who told me to call an ambulance. Now 4 days later, she’s still in hospital after being bounced around and finally admitted to a complex care ward. UTI is the first thing they looked for and although blood test did not show signs of any infection, we have to wait for cultures to grow in the lab. The gravity of her decline has shocked us and my dad who is 84 is severely shaken by it all. We are now fearful the hospital will think she can return home with my dad as her main Carer supported by me and my sister who still work full time. Doctors are supposed to be meeting with us tomorrow as mum almost had diabetic hypo yesterday and also had an unassisted fall from the toilet early Friday morning. She could barely stand and looked like she’d had a stroke or something so why they let her use the toilet on her own is one of my questions tomorrow. I would get you mum to the GP and get her checked for UTI or other infections and maybe a medication review if what they’ve prescribed is not doing what it should. It can be trial and error until they find the right meds for her. Good luck in finding some answers to this sudden change, thinking of you all, Tracy

 

[PsychicSnail]

This is a very difficult situation. I'm assuming your mum is currently living either with you or on her own.

There is an almost inevitable path of progression whereby the person with dementia slowly loses their grasp and eventually needs full time care. It sounds as though your mum is well down that path. Trying to look after her yourself will mean buying into potentially years of strife, whereby your own life will be put on the back-burner. It's a relationship destroyer and far more stress than anyone should be expected to endure.

There is no easy answer. Generally I believe that re-orientation and trying to argue that the person's view of reality is wrong, is largely a waste of time. In my experience it's far better to go along with the delusions, so long as it's not causing harm, as even if you manage to convince her otherwise, in the moment, minutes later you will be faced with having the same argument again.

Diversion and delaying tactics probably work best. If she starts kicking off then agree to take her home to see her parents, then drive around for a bit until she calms down. Take her back to your place saying "just need to pick something up first", but then delay and divert onto something else. If her memory is that bad then it will probably work, sometimes. If she persists in her delusion and starts getting upset then medication is probably the only option. You just need to constantly divert as you will never win and convince her otherwise.

Longer term, perhaps you could talk to the GP about medication that will keep her baseline agitation levels lower - basically doping her up a bit. It's harsh but faced with the behavior you are seeing, perhaps the only option.

You also need to seriously consider long term care. Maybe not to be implemented immediately, but you need to get yourself in a state of mind that you are okay with the decision. It's a hard thing to do, although most likely the right thing. You need to ask yourself, would you want your children to look after you if you were in the same state? The answer is almost inevitably no, and neither would your mum want to be a burden to you.

I'm sorry if any of this comes across as harsh or dispassionate. Dementia is the most terrible illness, in my opinion the worst, and by its very nature is cruel and upsetting. There are no easy answers.