Dementia is a progressive disease and there will come a time when it is no longer safe or practical for the person be alone. You may have already accepted that this is inevitable, and you may already be considering the next best step.
The person may not be receptive to the idea of moving into a care home or living with you or another family member, or may be refusing a live-in carer. And as a result, you may have had to postpone your plans. However, it could be one unfortunate situation that forces your hand.
My mother had refused to go into a care home even though it wasn’t safe for her to live alone anymore. She kept telling me that she wasn’t a child. I respected her wishes until one day I realised she wasn’t safe on her own. One night she locked herself out in the winter at 10pm without a coat. She didn’t know what she was doing or where she was going. She couldn’t remember where she lived. At that point, I realised that carers going in daily wasn’t enough. When the carers went home, there was no telling what would happen.
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 as a result of a fall or an infection and you may know they can’t return home until they have consistent care.
If they are in hospital, the person should receive an assessment from the local authority that looks at their ongoing NHS needs and whether they need reablement or social care needs when they leave. Reablement means they would normally receive free care for a period of six weeks when they return home, such as being prompted to take medication. They may be able to go into a respite home while they recover.
There will come a time when what your parent 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 your parent has 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 wish 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 careworker 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. The UKHCA is keen to emphasize that the right support will enable people to stay at home and be safe, and stresses that it’s no longer automatic that a person should have to go into a care home. This is why it’s important to seek advice from everyone involved in the care of your parent. For more information on live in care, visit http://stayinmyhome.co.uk
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.
There are different models of sheltered housing as you can either become a tenant of a sheltered housing scheme (talk to the local authority) or the person can buy their own property. More often these days, private companies provide sheltered accommodation. Sheltered accommodation tends to be more suitable for those who can’t cope with the size of a large house and garden, who aren’t managing household tasks easily and are struggling with stairs. Perhaps they also need occasional help and support and want to be nearer their family.
For a person with dementia, sheltered accommodation may only be a short-term solution, as their needs will increase. If they are already receiving help at home and struggling to cope when the carers go home, then this is unlikely to be a safe option unless there is another person living with them, such as a partner, who is able to help with their care.
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. Not everyone has the patience to be a full-time carer.
My mother stayed with me on occasions and it was very hard. Some days, it could be rewarding if she was feeling happy. When she had a bad day she could be aggressive and verbally abusive. I would feel resentful towards her and it felt like an emotional rollercoaster. I admit there were many times when my friends were going to social events that I had no time for and I would think: ‘I didn’t sign up for this.’
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. They may be frustrated by their lack of independence and that frustration tends to be directed at their nearest and dearest.
If you are caring for a parent with dementia, and you’ve had a troubled relationship in the past, then it’s important to try and address any issues that may cause resentment now. To be a good carer, you need to keep your emotions in check. If you have a grudge about the past, it will be hard for you to care for the person without feeling resentful. Deal with any issues now. It may not be realistic to expect the person with dementia to resolve past issues with you, so speak to your GP. They may be able to provide counseling to help you work through these issues. If you are still struggling with raw memories, then you could hire a careworker to provide part-time assistance to give you a break. Or you may feel that you can’t provide the care yourself. If you can’t do it then start putting steps in place to make sure the person has adequate care.
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.
If you decide that you can’t care for the person, don’t dwell on it. Work on finding a solution and don’t feel guilty. You are doing your best for the person under exceptionally difficult circumstances. The priority is to make sure they receive the care that they need.
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. You may question whether they will be happy. A former colleague of mine, who used to visit her granddad in a care home, once said to me: ‘You can’t necessarily make your mum happy, but you can make her safe’. Those words resonated with me. I knew it was no longer safe for mum to live alone. And I knew that I couldn’t care for her full time. If your loved one has reached this stage, the best thing you can do for them is to do your research thoroughly. Make finding the right solution your number one priority.