Nan has declined - need advise


Sorry this is going to be a long post…

My 86 year old Nan was diagnosed with mixed Alzheimer’s and Vascular dementia towards the end of last year. She has lived with us (in an annexe attached to my parents house) for 20 plus years prior to any dementia diagnosis and up until the last couple of years had lived an independent life. Following her diagnosis she began to decline in not wanting to shower, and her mobility became a bit worse. However, a package of care was out ii place at home with a Carer coming each morning to support with personal care and gradually she got into a good routine and was relatively stable with more good days than bad. She is also taking dementia medication.

About 2 weeks ago, as a family we have moved to a new house, in a new area. We have tried to replicate her bedroom and lounge area with the same decor and set up she is used to. Sadly, but not unsurprisingly she has found the move confusing, and her mobility has taken a further decline with her at times struggling to lift herself out of bed or get on and off the toilet. Other times she can manage this fine it’s not all the time. We have contacted adult services and are waiting for an OT assessment to look at aids to support her mobility at home and in the mean time have a bed rail and toilet frame.

My Nan has started to become increasingly distressed in the last few days. She is calling out my Mum’s name multiple times in an hour throughout the day, says she is frightened and doesn’t know what’s happening. My Mum has retired and been in the house with my Nan 24/7. She has now become incontinent and there have been lots of accidents (wetting herself). She has also talked about a sore lower back.

My Mum has contacted the GP who due to covid wouldn’t see my Nan in person but suspects a UTI and has prescribed antibiotics to treat this (she is on day 2 out of 7 of the antibiotics). There’s been no urine sample so we don’t know for definite yet that it is a UTI.

Last night at bed time she said she felt frightened but couldn’t tell us what she was frightened of. We gave her lots of reassurance but when she got into bed she appeared to be in a lot of pain with her back and kept saying she can’t breathe and was becoming distressed. We phoned an Ambulance who came and assessed Nan. They think the UTI may be affecting her kidneys, which in turn is causing the back pain. Ambulance wanted to take Nan into Hospital to treat this but she refused to go and so they have sent a referral to the GP to prescribe pain relief (in the meantime we are giving her paracetamol and ibuprofen).

The Paramedics were great and got Nan into bed comfortable and she was settled and started to appear in less pain, chatting away to them and being less distressed while they were here. However, once they left she was calling out my Mum throughout the night saying she can’t breathe. They assessed her breathing and said it is fine, they believe she is anxious and this is causing her to feel distressed.

As you can imagine this is having a huge impact on us as a family. Since the move my Mum hasn’t really been able to leave the house, we’ve had little sleep and are finding it really tough. We have increased my Nan’s package of care to three calls a day to minimise the impact on my Mum having to do everything but she is often refusing to let the carers take her to the toilet or wash her.

Obviously the move and UTI will be having a huge affect on my Nan. But I’m just looking for any advice on anything else we can try to reassure her and manage the constant calling out for my Mum multiple times a day? We’re hoping she will settle in time and will be less confused after the UTI is treated properly.

Any words of wisdom or signposting would be greatly appreciated.


I would suggest that next time, and sadly there will be a next time, you have a bag ready for her to go to hospital, and do NOT let the ambulance men ask if she wants to go to hospital or not.
She needs to have a proper investigation, and sadly is now probably in need of 24/7 residential care.

Mum on her own cannot surrender her own life running around her mum all the time.
My mum lasted until she was 87, but very, very frail for years. Dad died of prostate cancer, and my in laws were also poorly for years.
On the other hand, my husband died of a massive heart attack when he was 58, before mum died.
I shall always believe that trying to look after all our parents at the same time, plus our brain damaged son, were major contributors to his heart attack.
All the dreams we had for my husband’s retirement never happened.
Don’t let this happen to your parents, they have worked hard and deserve to enjoy their retirement.