If It’s Not One Thing...it’s your mother!

[AnnieP10]

Hello! Weirdly, I joined this forum yesterday evening after a bit of a day, sorting out what appears to be a spike in my mum’s dementia.
And now it’s 2.20am and I’m at mum’s, waiting for her to emerge from the loo, hopefully, finally, ready for bed.
I live about 16 doors down the road from mum. She has late onset dementia and is 92. She has always been opinionated, active and impatient but since dementia crept up on her about 5 years ago she has become dependent on me to keep her living in her home as she is terrified of going into a care home. She has been at the stage for the past year that she wouldn’t be able to stay in her house if I didn’t live so close by. However...mum still thinks she does all the housework, shopping, washing and cooking even though she doesn’t now do any of these things. Her short term memory is very poor and she has not been out of the house since last December. She has had a Care assessment and I have made tentative enquiries into respite care, just so I can properly clean her house and also have a break. Her GP has asked for an urgent mental capacity assessment that should happen this week.
So I was moving towards some extra support when today mum announced that she wasn’t living in her house and she wanted to get the train home! She also wanted to know where my dad was and he died in 1989. It’s the first time that she’s been this confused. The upshot is that I’m now sitting in her living room in the small hours having finally got her into bed. I will ring the doctor in the morning and see what happens next. I can’t stay with her every night. My OH starts four weeks of radiotherapy on Thursday and I’d like to be with him more than I can be.
its tough isn’t it? And I’m tired.

 

[Izzy]

Welcome to the forum. I’m so sorry to hear about your mum. It must be even harder for you with your husband’s illness. No wonder you are tired.

I hope your contact with the doctor today starts the ball rolling and you get some help for your mum. It sounds as if she is sundowning but of course she my have some infection, like a UTI.

I’m glad you’ve found this forum. You will get lots of help and support here. Do let us know how things go after you contact the doctor.

 

[Pete1]

Hi @Annie Pugh, welcome to the forum. It sounds like you have a lot to deal with, and I think what you have done and are doing for Mum is absolutely fantastic, but it sounds as though it is taking its toll on you and you now need some extra support - so do progress that. Are you getting Attendance Allowance for Mum and Council Tax abatement? Have you got Power of Attorney too?

I agree with @Izzy it could well be a UTI, that can cause confusion, so it is really worth getting that checked out asap through the GP (and urine test). It can be cleared up with the right antibiotics. Sadly that can become more frequent.

However, it may also be sun-downing, which is confusion that happens later in the day, or early evening when the mind becomes tired. Not recognising their own property and the desire to go home (often to a childhood home) is quite commonplace, as is believing deceased relatives are still alive (normally parents or spouse). It is extremely difficult to manage as logical explanation doesn't work and the person with dementia can become very agitated (it is very frightening for them) as, may I add, can we trying to explain! Unfortunately one of the main issues is the need to go 'home' becomes overwhelming and they can leave the house and embark on that journey.

I think at this stage you have to check for the UTI and then take it from there. It's really tough. Stay strong. All the best.

 

[Sarasa]

Hi @AnnieP10 and welcome to Dementia Talking Point. Not much to add to the sensible advice you've already received, but I just wanted to say how much I like your thread title.
My mum is the same age as yours and I first noticed things were a bit awry about ten years ago. I lived two trains and a bus away, so just popped in twice a week to check on her. Gradually things got to the stage where she needed more help, and she now lives in a care home near me. While at home mum only didn't recognise her flat once and that was due to a stressful day when she hadn't eaten or drunk enough. It might be worth checking your mum is drinking enough as well as for a UTI.
While she was at home mum disappeared about twenty years into the past, so was forgetting my brother was married, that my son was an adult, all thing in the comparative recent past. Shortly after moving to the care home she went back to the 1930s and is looking for her parents and talks about where she lived as a child. It sounds like something similar has happened to your mum, though tomorrow she might remember again
As your partner needs you now and for the next few weeks, I'd see if you can get your mum into respite care at least for a little while. She much trickier now with the covid restrictions, but if you don't you'll be torn in two by the situation. It sounds like if you weren't there to help your mum might have gone wandering, so she really needs to be safe.
Let us know how you get on.

 

[Kazza1467]

Hello! Weirdly, I joined this forum yesterday evening after a bit of a day, sorting out what appears to be a spike in my mum’s dementia.
And now it’s 2.20am and I’m at mum’s, waiting for her to emerge from the loo, hopefully, finally, ready for bed.
I live about 16 doors down the road from mum. She has late onset dementia and is 92. She has always been opinionated, active and impatient but since dementia crept up on her about 5 years ago she has become dependent on me to keep her living in her home as she is terrified of going into a care home. She has been at the stage for the past year that she wouldn’t be able to stay in her house if I didn’t live so close by. However...mum still thinks she does all the housework, shopping, washing and cooking even though she doesn’t now do any of these things. Her short term memory is very poor and she has not been out of the house since last December. She has had a Care assessment and I have made tentative enquiries into respite care, just so I can properly clean her house and also have a break. Her GP has asked for an urgent mental capacity assessment that should happen this week.
So I was moving towards some extra support when today mum announced that she wasn’t living in her house and she wanted to get the train home! She also wanted to know where my dad was and he died in 1989. It’s the first time that she’s been this confused. The upshot is that I’m now sitting in her living room in the small hours having finally got her into bed. I will ring the doctor in the morning and see what happens next. I can’t stay with her every night. My OH starts four weeks of radiotherapy on Thursday and I’d like to be with him more than I can be.
its tough isn’t it? And I’m tired.

Take it a day at a time and seek all the help and support you can. It's hard work and challenging to get various services to take notice of you but don't give up! Just a thought if you speak to gp then enquire about your mum having blood and urine tests if she hasn't recently had this done. Apparantely it's common for Dementia patients to get urine infections which can cause confusion and hallucinations so worth getting a check up. Good luck x

 

[AnnieP10]

Hello again! Thanks so much for all your replies and apologies for the delay but after my outpouring during the twilight zone things moved rather rapidly!
The doctor did a video call last Wednesday morning and called an ambulance to take mum (& me) to the hospital. Tests ruled out a UTI but it was clear that all was not well with mum, so...
She was admitted for further tests and CAT scan. She was understandably very unhappy about this but it was made clear to us that she was in no state to return home, with or without me.
I was due to complete a provisional assessment with the care home I’d visited so rang and explained what had happened. They asked if I’d like to bring respite care forward so that mum could be discharged to them for 3 weeks respite care, to be reviewed.
So, mum is now in the home and wants to ‘come home’, although she still isn’t sure where/what home is. She can’t remember going to hospital, going to the care home or any visits my brother and I have made. The home has been very reassuring and say her response is not unusual so we are waiting and hoping she will settle.
I know that it will be impossible for mum to return home without 24 hour care and that we have done all we can to keep her at home for as long as she was safe and well. It’s still so difficult to accept that she doesn’t understand this - it’s also the first time that my brother and I have not given in to her requests and that is also quite bewildering!
I’ll try to be a more frequent visitor to this forum. Thanks for listening ?

 

[canary]

It sounds to me as though you and your brother have done everything possible to keep your mum at home for as long as possible, but the disease has now overtaken everything you could do. There comes a time when you have to change from enabling their wishes to enforcing their needs.

The desire to "go home" is almost universal at some stage in dementia. It is often identified as a childhood home, but its not so much about bricks and mortor and more about a state of mind. Your mum is wanting to escape the confusion and anxiety of dementia and is seeking the comfort and safety of somewhere that she knows. The care home is right, its a very common response and it sounds like they know how to deal with it.

 

[Sarasa]

Thanks for the update @AnnieP10 , and I'm glad your mother is safe and being well looked after. It sounds like the best option would be for her to stay in the care home permentantly assuming you are happy with it. If you do you'll have to invent reasons why your mum can't go home, work on the house, doctors say she needs to get a bit stronger etc. etc. At this stage 'home' is more a state of mind, somewhere where the person with dementia feels safe. Due to covid restrictions I've only seen mum once since March but before then she was always wanting to come home with me or go and visit her parents.
I hope things are going OK with your partner and his treatment too.

 

[MartinWL]

Her GP has asked for an urgent mental capacity assessment that should happen this week.

Your GP is probably a first class medic but perhaps has a poor understanding of the law. There is no such thing as a generalized mental capacity assessment. Mental capacity has to be assessed separately for each decision. This isn't as assessment that has to be done by doctor or other specialist but by the person who is relevant at the time e.g an attorney, or a medical person if it is a decision about treatment. People often have capacity for some decisions but not others. In the case of a decision about where to live she would need to understand her own needs, with help, and be able to remember and consider all the pros and cons. If she can't do that she has not got capacity for that decision but there may be other decisions that she could take for herself.