What to do when a parent with dementia refuses help?
Are you struggling with the changes you see in your mother or father and want to help, but are not being allowed to?
This is unfortunately a very common situation for many people. It can be hard to see your once independent and confident parent suddenly becoming forgetful and even confused.
This can be made even worse when they refuse your help which can sometimes lead to angry and frustrated moments.
Often the refusal of help with dementia and Alzheimers can be due to a lack of awareness that there is an impairment, this is called Anosognosia.
This is where the part of the brain that would recognise and understand an impairment is damaged, often the case with dementia.
If you are recognising that your parent cannot accept they have dementia, it is likely they have anosognosia and you’ll not convince them of their dementia symptoms which often can cause anger and agitation. Many experts will recommend that you refrain from trying to convince them of their dementia.
What can you do to help?
With the presence of anosognosia, it is easier to see why your parents would be refusing your help. But at the same time, it is important they have the right support and help. Especially if they refuse to give up tasks that can put their life and others in danger such as driving. But fret not as we will discuss in this blog post solutions to helping your parent when they refuse help with dementia.
Characteristics of dementia
Understanding the characteristics of dementia can enable you to recognise that your parents behaviour is out of their control.
Common characteristics of dementia include:
- Memory loss that worsens over time.
- Confusion about where they are or what they’re doing- especially in unfamiliar places or with unfamiliar people.
- Language deterioration.
- Problem-solving deterioration.
- Failure to complete everyday tasks with ease which worsens over time. This includes cooking, cleaning, driving, dressing, managing finances and taking medication.
- Some people with dementia get lost easily, even leading them to leave the house and wander about.
- Anger and frustration as an emotional response to the slipping control they once had or their fear in a situation.
Importance of understanding their situation
Put yourself in your parents’ shoes. Not only is the slipping control over your mental capabilities difficult to accept, but the loss of independence as your child takes over the parenting role can be very unnatural and frightening too.
You must understand from their perspective and ask yourself the question, what if this was you? How would you like to be spoken to? How would you like to be treated? This perspective will certainly change how you feel towards your parents and what they’re going through. Be empathetic and supportive, they are still your parents so try to avoid treating them like a child.
Typical refusal behaviour and how to deal with it
Below are common circumstances when parents with dementia will refuse help, we’ve given some helpful tips on how to deal when faced with these scenarios.
Refusal of hygiene and self-care
Many parents living with dementia will refuse showering or bathing. There are a few reasons for this. They could be afraid of the water and slipping in the tub. They could find a deep bathtub difficult to get in and out of, and may not be comfortable sitting in a deep pool of water. They may even have lost the function and memory of how to clean, so find the prospect of this task daunting.
For whichever reason your parent has refused help with bathing and cleaning, it is important to remember that their refusal for help in this area may come from a place of wishing to remain dignified and modest. They may be frightened of being naked in an enclosed area. They may even feel upset and angry that they’ve been told they need to wash which can be embarrassing.
Tips on how to encourage cleaning:
- Reduce the number of times you require them to bathe, only wash when absolutely necessary which will lessen the opportunities for resistance. Never force someone to bathe.
- Offer only the level of help that is needed. This is to enable them to still have independence and remain dignified. If their ability worsens over time it may be better for a professional carer to clean them rather than a family member.
- Reduce the potential for accidents. You can put handrails in showers, introduce shower chairs or even change the showerheads. There are many products that can make the showering process easier. With regards to a bathtub, only fill it with a shallow amount of water and introduce a bath seat.
- Some people don’t like the feeling of getting in a shower or bath, especially water running over their heads. Take little steps at a time. Communicate and ask permission when cleaning them. Begin with less invasive areas such as washing hands or feet, then progress to the face. If your parent needs you to help bathe them you can gradually build-up to this as you make the activity more familiar and comfortable.
- Make the bathroom environment comfortable. Make it warm or introduce music such as a shower radio.
- Communicate calmly and reassure through each step.
- Encourage participation of cleaning in creative ways. This could include telling them they are going out somewhere, or that someone is visiting and maybe it would be nice to freshen up. Let them feel like they are deciding.
- Try to recreate their bathing routine that they enjoyed in the past. Make it familiar and inviting.
- Try bath time as a time of day that suits them best.
Refusal of Dr appointments
Some parents may outright refuse to see a Dr If this is the case with your parents then try to find out their concern with seeing the Dr and try to put their mind at ease. Communicate with them the steps they will encounter and be reassuring and most importantly understanding!
Find out why they won’t take their medication first. Maybe they have an issue with swallowing the pill. Talk to their Dr to see if you can crush up the pill or even sneak it into food. Jam is a great food to try as the sweetness masks the bitterness and the lumpy texture disguises the medication.
Refusing changes in living situation
If your parents’ care begins to exceed your ability then assisted living may be the next step for you to take. Many parents will be extremely averse to this- especially if they enjoy their independence in their own home.
- Try visiting the home frequently prior to moving in. This way your parent can get used to the staff and hopefully become familiar with the new surroundings.
- Sometimes you may not have a choice but to move them into assisted living quickly, especially if living on their own has led to major accidents. In this scenario visit them frequently.
Convincing your parent that they need a carer is difficult, but here are some suggestions that may help the situation.
- Emphasise the benefit of having a caregiver. Describe the problem as yours and not theirs. By accepting a carer they are relieving some of the worries you have.
- Include your parent on some caregiver interviews if you’re hiring in-home care.
- You can let your parent have control over the process by letting them decide the days and time of the carers visits (if you are in a position to do so).
- Begin with infrequent visits this will be a slow introduction to getting your parent familiar and accepting of the caregiver.
- Ask the caregiver to give your parent choices.
- Be there for the first few caregiving sessions to support your parent.
What can you do?
There are many changes you can make to your behaviour that will indeed help the situation and therefore help your parent.
Stay patient and calm
Using a calm but confident tone rather than getting frustrated or upset in response.
Use distraction techniques
If your parent displays angry or agitated behaviour try changing the subject to prevent escalation. Bring out some distracting activities, play music, look at memory albums or even change the environment by going outside or to a quieter place.
Try these reminiscence activities.
Give autonomy and control when possible
Ask your parent what they would like to do. If they have difficulty answering open-ended questions, give them a choice of two activities they can participate in or try to ask them simple questions with just a yes or no answer.
Create a structure to their day
An organised and structured day can help many people living with dementia as they can come to expect a daily routine and feel more in control of their day. Focus on activities that they enjoy and are still able to do. This allows your parent to regain a feeling of control. A great way to allow control is to use a daily diary with upcoming appointments. They can look to see what’s coming up in the day ahead. Find out more about using a daily diary for dementia here.
Be respectful, positive, reassuring and supportive
You may think you are calm, but your body language may give it all away which can be picked up on easily by your parents. It can be a very frustrating time caring for a loved one with dementia, but internalising their struggle by approaching with empathy will dispel any projection of your anger and frustration on them. You will find they are likely to be more responsive, calm and happy.
Listen to them
Listening to your parents when they tell stories, voice their concerns or ask for help will benefit them and you greatly. As their dementia develops, overtime trying to decipher their meaning may become more and more difficult. Therefore it is key to intently listen and absorb old stories and even their pains and discomfort. It may help tremendously in future scenarios.
People living with dementia tend to talk less and hear less as time goes on, relying on visual cues to communicate. Use clear cues when communicating with them, you’ll find better cooperation.
We’ve already highlighted that body language can have a huge effect on the responsiveness and communication to a parent living with dementia. So be mindful of your facial expressions. Give them a warm smile, hold their hand and get them to laugh. You’ll appreciate and adore these connected moments.
Let some things go!
For many people living with dementia they experience what is called the ‘Reminiscence Bump’. This is when the brain chooses to block all memories and instead focuses on a specific time in their life, usually between late teens to early twenties. When this happens they are living in a different reality to us.
If they keep talking about their past lives as if they’re living it at the moment, let them have it.
So what if they think Margaret Thatcher is still Prime Minister? What good will it do to correct them, when they will just forget anyway? Trying to correct them may lead to confusion and anger. Sometimes it’s easier and kinder to just play along.
Simplify your instructions and conversations
- This is so that your parents can easily process the task ahead of them. It also allows them some control and finishes tasks that may seem daunting initially.
- Don’t fire questions or ramble on in conversations that your parent is unable to follow. Your parent will lose their vocabulary as time progresses. Speak slowly and clearly and speak in short sentences.
It can be upsetting to see your parent living with dementia. The changes you witness them going through can sadden you, especially if they refuse your help.
As we’ve talked about throughout this post, having an understanding and empathy is key to get them to open up to your help.
The roles are reversing between you. As you take on the responsibility of keeping your parent happy and safe, they need your support and understanding.
If you’re struggling yourself with the situation then it is just as important you reach out for support and advice too. There are many organisations and support groups out there to help you. Take a look at the NHS website for more links to help here.
For more advice and help on caring for a loved one with dementia, check out our post here: Caring for someone with dementia.