Any advice

[jac2432]

Hi Everyone,

My 2 sisters and I have been caring for our 85 year old mum at home for about a year and a half. We have good days and we have bad days but generally speaking, we have been coping.

The last month though we have been met by a new set of challenges. The first thing was that we found her on the floor one morning(she lives alone). We had to get the paramedics to get her up. We had a bad day the previous day. We saw a doctor, who gave antibiotics for a UTI and she was referred for a weeks respite. We took her home. She attended the usual day centre, who were concerned about her, so tested her urine and suggested a UTI. Another course of anti biotics was prescribed. A few more days passed until we found her in bed one morning, unresponsive. We called ambulance and she was taken to A & E with fast AF (heart problems). They said this was due to infection. They discharged her the next day. We struggled through a few more days before she was again taken to hospital.

She has been very difficult and non compliant for them. In an ideal world we want to bring her home but we need for her to be mobile. They just keep her in bed, all day every day.

Please can anyone advise on how to deal with these difficult situations.

Many thanks

 

[karaokePete]

The first thing that springs to mind with me is that a care needs assessment is required. It may even be that 24hr care is now required.

In the Hope that they help, here are links to relevant Society Factsheets. Just click the second line of each link to read/print the document

https://www.alzheimers.org.uk/get-support/legal-financial/assessment-care-support-england
https://www.alzheimers.org.uk/media/8211

https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-care-home
https://www.alzheimers.org.uk/media/1016

 

[Grannie G]

Hello @jac2432

UTI`s or other infections do have a detrimental effect on the behaviour and confused state of many people with dementia which might explain the change in your mother`s behaviour in hospital. It also might explain why she is in bed all day.

Do you think it would help to discuss your worries about your mother possibly losing mobility with hospital staff.

 

[Louise7]

What is the reason for your Mum being kept in hospital now - an infection or something else?
I picked up on your comments about how your Mum has been found on the floor and was also unresponsive in bed, and atrial fibrillation has been identified. This is unlikely to have been caused by an infection. Have you made the doctors currently treating your Mum aware that AF was identified during her recent A&E visit?

To cut a very long story short, my Mum had episodes of responsiveness/fainting and falls. On a number of occasions A&E identified a heart problem (bradycardia) but simply discharged her, leading to further falls/unresponsiveness and A&E visits. It seems that although the heart problem was referred to in her notes the various hospital departments are not 'joined up' so did not look at the outcome of previous A&E visits.

When Mum was admitted earlier this year after another fall the consultant was adamant that her falls were due to 'dementia', not a heart problem, and refused to make a referral to cardio. Mum was kept bedbound for weeks, apparently to 'stop her falling'. It was very difficult but I eventually managed to get a referral to cardio who identified the same heart problem that had been picked up by A&E 2 years previously and Mum has recently been fitted with a pace maker.

It is not good for people with dementia to be in hospital, and the lack of mobility is a problem, so speak to your Mum's consultant to find out why she is being kept in. Also make them aware that she has previously been found on the floor and unresponsive in bed and that atrial fibrillation was identified during her A&E visit as they may not know this. As above, you need to have a care assessment but also need to be aware of any medical issues. A UTI can cause increased confusion but so can a heart problem. Ask for the reasons why your Mum is being kept in bed. If there are no medical reasons could you and your sisters help to mobilise her? In my Mum's case I had to resort to complaining to PALS about her being kept in bed before staff would take her out and sit her in a chair. After then being informed that Mum was unable to walk due to 'dementia' it turned out that she actually had a spinal fracture which had been missed!

It can seem awkward to keep asking questions of the doctors but I found that it was the only way to find out exactly what was going on. The consultant should be able to explain to you why your Mum is being kept in and why she is not being mobilised so please ask.

 

[jac2432]

Thanks for the very helpful replies. Think we need to ask a few questions.