Often the first challenge for a carer of a parent is being recognised by the parent.

Becoming a carer for a parent is the ultimate shift in power across any social
dynamic. The people who raised you to the person you are, are now the
person in need of that care and attention.

It is difficult for both the parent being cared for and the child providing care to accept this change. Many of the carers we spoke to actively pointed out that this was a significant part of the challenge in getting support for themselves and their parent.

We should all talk about the future and the possibility of care as soon as possible. Understandably, most of us do not want to think of our parents as weaker or in need of support.

However, the sooner the conversation happens, the easier it is to deal with without also considering the additional emotions of a condition or conditions they are facing.

However, most of us only have that conversation after the caring role has begun.

So it is important to choose a moment where the situation is relaxed, all parties have time to discuss everything and nobody feels ambushed. It’s also a good idea to have this in a private setting so no one is concerned by eavesdroppers.  

If your other parent is part of the parent in needs life, you have siblings or a partner who will be providing care for your parent or be actively supporting you as a primary carer, they should be included in the conversation with the parent. They may have little to add to the initial conversation, but their inclusion will make sure they feel involved and informed which, will strengthen your connections as a family.

If your other parent, siblings or partner will not be actively involved in the care or supporting you to care, you still need to have conversations with them about the situation.

It is really important they understand what you are doing and how you are now involved in your parent's life. They may want more information or to be kept updated. They may even choose to get more involved. You need to give them the option of understanding the situation.

When you and the care ciricle are comfortable with the caring situation, you need to consider who else may need to know and recognise that you need additional support. A good place to start is the GP as you may need more medical support due to your caring role.

You should also consider speaking to social services. You can get a Carers Needs Assessment whether the person you provide care for gets any assistance or not.

You should also consider talking to your employer if you are employed. You have additional rights within employment law and may have further contractual support which means you do not need to take holiday time to get to appointments or emergencies. It also means your employer can be more flexible with your needs to support you to stay in work.

For many carers of parents beginning their caring role, it was getting to grips with medical terms and what this means for their parents was the first hurdle of their caring role. It is not uncommon for carers to feel overwhelmed by the different names and what this means now and in the future.

This can be particularly tricky at the early stages of a caring role when you, as the carer, are not necessarily in those medical appointments so the information is not being explained to you directly.

It is important to understand the direct conditions your parents have and what medications are being taken to help control those issues.

Agree expectations with your parent

The first thing you need to do is discuss what your parent's wishes are. Many parents will not want to share their weaknesses with their children however you are not empowered to support them if you are not given the correct information that allows you to make smart decisions.

If they are not willing to share these medical concerns, you have to forgive yourself if the medication process goes wrong. You can provide support without the right information.

If your parent or parents are willing for you to be involved, you need to agree on what you are to be involved with. Both you and your parent need to be comfortable with what you will know and how much time this will take. Going to appointments can be time-consuming and emotionally difficult for both parties. However, once you have discussed this, the process becomes much easier.

Never be afraid to ask more questions

To support your parent, especially if memory is a concern, you need to understand

what you are being told. Never be afraid to ask the doctor to explain something again or word it in different ways.

The better you understand the condition, the more you can do to support your parent. If you’re concerned, go back to a professional

Often a doctor or other medical professional gives you an explanation and everything falls into a new pattern of normal. However, sometimes, what has been said does not tally with what is actually happening.

If this is the case, go back to your GP or, if you have the ability to, the professional you last spoke to. Sometimes a series of conditions can present similarly but need different types of treatment. If it doesn’t seem right, then ask.

Arthritis

Arthritis is a common condition that causes pain and inflammation in a joint.

Different kinds of arthritis and related conditions have different types of treatment. Understanding the type of condition will help support the parent you care for.

Hyperglycemia, Hypoglycemia and similar conditions

This is when the sugar in a person’s blood gets too high or too low. Most commonly associated with diabetes, this and similar conditions can affect older people for a variety of reasons.

A condition like this is the most common type of illness that may require you to inject your parent with medication.

Being older

This is a catch-all term for a person getting older and having medical complaints that do not have an obvious cause. This can be a cause but if you have concerns, push for a reason behind the condition.

Dementia and other memory conditions

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. There are many different causes of dementia, and many different types. Depending on the type of dementia, the progression and effect of the illness can change radically.

You should request more specific information on the type of dementia to better understand what to expect in the future.

Hearing and Sight loss

Hearing and sight loss are common in older people. Both have causes ranging from the easily fixable to the permanent loss of one or both senses. Pushing for the route cause rather than accepting this as a diagnosis can often create a better standard of life for your parent.

Loss of Mobility

Mobility problems may be unsteadiness while walking, difficulty getting in and out of a chair, or falls. There are common conditions in older people that can contribute to mobility problems, such as muscle weakness, joint problems, pain, disease, and neurological (brain and nervous system) difficulties.

Shingles

Shingles is an infection that causes a painful rash. Easily treatable and with an available vaccine, this condition can commonly interact with other health conditions in older people creating unusual scenarios as a carer.

Unfortunately, as people get older, they become far more likely to have multiple conditions affecting them at once. This often means one condition can inhibit another one from getting treated or create a far more complex caring scenario.

As soon as a parent has more than one condition, you need to discuss this with anyone else providing care for your parent.

Often this is a sign that the situation has changed significantly and care needs will require reassessment. See more about types of care later in the booklet.

Getting some extra support set up at home for someone you care for can be challenging.

They may resist the idea of accepting help outside of the family or having 'strangers' coming into the home environment. The prospect of this kind of change could feel like a big step in their eyes, or an act of giving up independence.

One way of approaching this is to suggest small changes or even a trial run and then this support could gradually be built up as time goes on and trust builds.

Helping the person you look after feel as involved as possible in the decision is important – as well as indicating that you need some extra help and support yourself.

The emphasis on how this could help you could go some way to helping to convince them. As many people fear losing independence, it might also help to explain how this could help them live more independently.

Council support is when the person you care for has a disability needs or care needs assessment to see what support they might need to continue living safely and happily at home.

These ‘eligible needs’ will form the basis of what support is offered and what services become available to you.This is called a care plan.

A range of topics can be in the care plan from in-house support which may happen once a day or multiple times a day, to access to adaptions to the home so they can move around more easily. to transport so they can access community services.

When a care plan is written, the wishes of the person who is receiving care must be taken into account. This includes cultural and other environmental needs.

For instance, someone with a religious belief that a person from another gender may not see them naked can request to only have assistance being cleaned by someone of their own gender.

When a council and person getting support agree a care plan, this is offered to private companies who will bid to take on the contract.

Once this has been agreed between the private company and the council, the support should begin.

You can take control of the type of care your parents receive by taking the support via direct payments.

Direct payments for the person being looked after are more commonly ongoing payments used to employ a care worker or personal assistant to help with their day-to-day needs or for a period of respite care.

These payments are usually an alternative to having those services provided directly by the council

If your parent is ill or frail enough, they may be eligible for NHS-backed Continuing Health Care (CHC). This is a separate set of requirements and assessments from council-led support.

Someone eligible for CHC support is most likely to require professional 24-hour support in a care home setting. However, it is possible to care for someone in the home with CHC support.

You should carefully consider if this is right for you as the threshold for someone to get CHC support is very high therefore the level of care needed to support that person is also going to be very high.

Is this support available if my parent lives with me or moves in with me?

A person’s need is assessed on their condition and what is available to them. There is no reason someone would be penalised for support by living with or moving in with a family member.

However, what type of support someone gets also depends on the expectations of what care they already receive.

If your parent says they do not need support washing because you will do it, it is highly likely this will not be considered a need and that support will not be granted.

You as a carer have the right to refuse to provide care if you are not willing or able to do so however that is not always obvious if you are volunteered into a role without your agreement.

Private support is when you or your parent go directly to a care at home organisation/agency and ask for support to begin for your parent.

This may be done after a care plan with the council has happened as a template for what support should be provided or decided independently between your family and the agency depending on what you would like and your budget.

You can find providers on the Care Inspectorate Wales website:

https://www.careinspectorate.wales/find-care-service

Live in care is when you pay for someone to live with your parent or parents as a job.

This is usually through a private arrangement with a company or becoming an employer to pay for the care worker as an employee. Due to this private agreement, you and the person you employ can agree on the times they are available, what they are expected to do and how they will be compensated for their time.

Sometimes direct support is not needed by your parent or parents. However, there may be tasks that they cannot complete and they or you wish to pay to be completed.

Cleaning services

The most common services are cleaning services. This can range from someone in and cleaning the home to laundry services that take clothes and/or bed linen away to be cleaned.

This can cost anything from £10 to £50 depending on service level and location.

Gardening

Another common service is to commission a gardener or ground-clearing company to keep the garden tidy.

This has been shown to have positive mental health ramifications for older people if they can access open, outdoor spaces easily.

Gardening services start at £25 and costs increase depending on the size of the garden and the desired effect.

Activity or community centres

There are a numerous activity and community centres for older people to get together and commune across Wales.

Many have special facilities or days for people with specific illnesses or conditions while most cater for these conditions every day.

To find a community centre near you, try www.dewis.wales

Yes, just because you have someone getting support in a care home, you are still providing some unpaid care for the person you care for.

The type of care has likely changed though with more emphasis on emotional and financial support than physical care.

However, you can no longer claim Carer’s Allowance or the care element of universal credit if someone goes into a care home as you are no longer satisfying the 35 hours per week care threshold of those benefits.

One of the most common elements of care, carers of parents spoke about was managing the financial or medical decisions of the parent they cared for.

There are different ways of looking after someone’s affairs and these can be sorted out at different points of a caring journey.

If someone can make their own decision currently, you can

• Create a third-party agreement (mandate)

• Become an appointee

• Get ordinary power of attorney

• Get lasting power of attorney

If someone is unable to make their own decision now, you can

• You can become an appointee

• Become a court appointed deputee

Find out more: https://www.carersuk.org/wales/help-and-advice/practical-support/different-ways-of-managing-someones-affairs/