I thought I was coping but now I realise I’m not. I’m 68 and care for my Mum who is 94. There are just the 2 of us -the rest of our family live too far away to help. Mum’s mental health has deteriorated over the past few months and the dementia has rapidly taken a hold during the last 2 weeks. She is agitated, constantly pacing around the house using her walker, refuses to sit down and insists on eating her meals while standing up in the kitchen. As the evenings draw in, Mum has dreadful panic attacks ahd has to open all the doors or insists on walking up and down the road. It doesn’t matter if it’s torrential rain, cold, hailstones or blowing a gale; she has to be outside. I settle her in at bedtime but she’s up several times a night. One night, she was up every 20 minutes. She must be exhausted. I know I am. The doctor wasn’t able to help much. She said sleeping tablets are not an option because Mum falls quite often.
I’ve asked Mum if she would feel safer in a care home or at least have a carer sit with her while I go shopping or get some rest but she gets very distressed. She just wants me with her and she wants to die in her home not in a strange place. She says she doesn’t want to ‘be here’ anymore. Mum is such a friendly, caring, loving person and it’s heartbreaking seeing her like this. What can I do to help her? Any suggestions gratefully received. Thank you.
Thank you sunnydisposition (what a lovely bright name)
I’ve read about sundowning and tried the distraction techniques but nothing works. Once she’s got her mind set on going out, that’s it. We’ve got cold and soaked, come back in and 5 mins later she’s sobbing to go out again. I’ve asked her why she doesn’t want to stay in the house where it’s warm and dry but she just says she wants to be outside. She’s even asked if she can stay outside all night, sitting by the front door on her walker. I’ve wondered if counselling would help, but I’m not sure Mum would remember what was said to her or follow any advice. Maybe things will improve once the evenings get lighter?
With sunnydisposition I’m feeling for you. Your situation is almost beyond belief and I’m very sorry.
My mum is 94 next month and suffers from Alzheimer’s disease. I’ve noticed a real deterioration in her condition over the past year but nothing like your mum’s. I know I could never cope if I were in your position I’m afraid, it’s just not within my ability - I’d try for a while but fail. I know too that mum and I want desperately for her to remain at home during her illness.
I have no advice really, just an offer of support in a terribly bleak time. You’ll probably be advised to think of yourself and find an excellent nursing home for your mum which is the right advice of course. We grow older and sick ourselves and the physical and emotional strain our caring roles puts us under is immeasurable. I guess I’m really thinking about a horrible time for you that would be intolerable for me.
Thanks for replying David and for your very kind words. It means a lot that there are people out there who understand and are willing to share their experiences and offer support. Like so many carers, I have no training. They don’t teach you this at school. I just do the best I can on a daily basis, but I know there will come a time when Mum will need professional help whether she agrees to it or not.
I do sympathise with your situation with your Mum. I’m sure she’s incredibly grateful you are there for her and you are giving her the chance to stay in her home. I wish you all the very best too, David. I hope you find some calm moments amongst the stressful times.
Do you think going outside at night may have now become a habit. And Mum is now unable to break the cycle. Have you tried doing two nights away from home in the evening. Or do you think Mum would still continue to complete the task.
Olivia, it’s a desperately sad situation. The more help you get the longer mum can stay home, but it sounds like you have none whatsoever? No one seems to believe how desperate things have become?
Have you contacted Social Services for a Needs Assessment for mum and a Carers Assessment for yourself?
Is mum getting Attendance Allowance?