Christina Neal recalls the day she realised her mum could no longer live alone and has advice on what to do if you’re in a similar situation with your loved one
I remember the day well. It was 10pm and I decided to give my mum another call before she went to bed. I’d already spoken to her several times during the day and twice earlier that evening. I knew she was deteriorating and she wouldn’t be able to live on her own for much longer. I dialed her number and she didn’t answer the phone. After calling several times, I grew concerned. I lived more than an hour away from her and wondered what to do next. Should I call a neighbour or just drive over there? I waited another five minutes and tried again. This time, she answered, sounding angry and frustrated. I asked if she was OK and said I’d not been able to get a reply before. She shouted at me for ‘checking up’ on her and told me she was a grown woman and didn’t have to answer to me. I reassured her that I was just concerned but she kept shouting. She said she’d gone out and it was up to her how she led her life. I kept calm. I was used to her mood swings. I told her I was glad she was OK and said goodnight.
The next day, I found out what really happened. Her neighbour rang me and said mum had been found outside her house by another neighbour at 10pm, locked out, with no coat while holding an empty tea cup. Mum didn’t know why she was outside. The neighbour who found her didn’t have my contact details so they’d phoned the police. The police came along and managed to get mum back inside without breaking her front door down. This happened in December. Mum had no recollection of it the next day. For me, it was the final straw. Mum had been battling with me over this, but I’d made the decision for her. She could no longer live on her own.
You may have a similar ‘final straw’ moment with your loved one when you realise it’s inevitable for the person to either move in with you, have a live-in carer or move into a care home. You can’t always make the person happy but you have an obligation to keep them safe.
It may take something like a specific event or a fall for you to conclude they can’t be alone. Or the person may be in hospital because of a fall or an infection and you may know they can’t return home until they have consistent care. There will come a time when what your loved one wants and what is best for them are two different things. If you want them to go into a care home, your hands may be tied. If they have made an Advance Decision that clearly states they do not want to go into a care home, then you do have a duty to act in accordance with their wishes and do your very best to keep them out of one until it is deemed the only safe option.
You may have considered these options:
- A live-in care worker
- Sheltered housing or sheltered accommodation
- The person coming to live with you
- A residential care home
- A nursing home
A live in carer may be an option as they will be with the person most of the time, usually on a rota basis over a weekly, fortnightly or even six-weekly basis, to comply with working time rules for breaks.
There are two types – sheltered accommodation and extra care sheltered accommodation. A sheltered housing facility will provide 24-hour support from a warden on site, or via a phone line support. With extra care sheltered accommodation there are likely to be additional facilities, such as a communal café or a care scheme that the person would have the option of buying into. For a person with dementia, sheltered accommodation may only be a short-term solution, as their needs will increase.
Living with you
It’s easy to feel that you should be the one to take care of the person but in reality this may not be practical. My mother stayed with me on occasions and it was very hard. When she had a bad day, she could be aggressive and verbally abusive. It was an emotional rollercoaster.
When a person has dementia, night and day can become blurred, and they may wake frequently, which means your sleep will also be affected. They may struggle to adjust to the new environment.
Remember that the nature and extent of the care will grow. In the early stages, you might only need to do domestic chores, prepare meals and prompt medication. As things change, you’ll need to be comfortable with personal care, such including washing, bathing and toileting. And a person with dementia can become incontinent. They may not be able to remember where the toilet is, or react quickly enough to the sensation of needing the toilet.
A care home
Moving the person into a care home or a nursing home could be a good solution, but check out as many different homes as you can and check that the home you have in mind has a good rating from the Care Quality Commission (CQC) – their website is here: https://www.cqc.org.uk
Age UK also has an extensive guide on its website on choosing a good care home. Visit https://www.ageuk.org.uk
If you decide that you can’t care for the person with dementia for whatever reason, don’t dwell on it. Work on finding a solution and don’t feel guilty. You may want to move the person into a care home. It will of course involve a huge lifestyle change, but in time they should adapt to a new environment. Remember it’s about keeping the person safe and finding the best solution for them – and for you.