Caring for an arthritis sufferer

This section discusses arthritis from the perspective of someone who acts a carer to a person with arthritis. This is a difficult and challenging job but can also be extremely rewarding as well.

This section of the guide is aimed at new carers and those who have many years of experience in this role.

If you are a carer then did you know that you are one of 6 million people in the UK who cares for someone with arthritis?

(Source: www.arthritiscare.org.uk)

Looking after an arthritis sufferer means caring for:

• A partner or spouse
• A child
• A family member
• A friend
• A colleague
• A neighbour

As you can see it covers all demographics. Arthritis sufferers include male and female, young and old, black and white etc. This condition is no respecter of age, ethnicity, income level, background and so on.

This section about caring responsibilities is arranged as follows:

• Balance of responsibilities
• How to help an arthritis sufferer
• Role of the carer
• Looking after yourself as a carer

Balance of responsibilities

Caring for someone with arthritis is a delicate balance between attending to their needs whilst ensuring that they are able to retain a certain amount of independence.

The positives include knowing that you are making a difference to someone’s life. This also means helping someone to manage their condition and enabling them to lead as normal a life as possible.

But there are also a few negatives which include physical and mental stress, isolation and money worries.

How to help an arthritis sufferer

There are several ways you can approach this role but remember that at all times; the aim is to enable the person to remain as independent as possible.

There are four ways of doing this which include:

• Understanding about arthritis
• Two way communication
• Helping with treatment
• Support and advice

This means finding out as much as you can about arthritis so that you have an understanding of the effects of this condition on the person’s physical and mental wellbeing. The two most common types of arthritis you will encounter are rheumatoid arthritis and osteoarthritis.

Understanding about arthritis

Accept that the sufferer will have good and bad days. This is often due to ‘flare up’s: periods of intense activity when the arthritis symptoms are at their worst followed by remission (when the symptoms have died down).

The sufferer will become very tired, emotional and frustrated which they will express as a series of angry outbursts. This is often due to painful, stiff and swollen joints, and a lack of sleep. This is where sympathy and understanding are vitally important.

Two way communication

Talk to the person about their condition and any concerns they may have. Encourage them to express their feelings rather than bottling these up.

Make an arrangement whereby you will offer help when they ask but will respect their right to say no to your offer of help. This will enable the person to maintain control and a sense of independence. It helps to establish early on in the relationship clear guidelines for when help is needed and when it is not.

The sufferer may find it easier to talk to someone who is ‘neutral’rather than a close family member.

Helping with treatment

Be patient and sensitive to their needs. Someone with arthritis will take longer to perform tasks which include even the easiest of things. They may require help with personal or intimate care such as washing, dressing or using the bathroom.

Provide additional support with their treatment. The sufferer will have been given a diet and exercise plan so encourage them to stick to this. Exercise with them and suggest healthy meals which will stimulate their appetite.

Understand about the type of medication the person is taking. Learn all you can about the various arthritis drugs which includes the risks as well as the side effects.

Support and advice

Offer support and advice wherever necessary. Encourage the sufferer socialise with others and to undertake activities which they feel are beyond them. The aim is to boost the person’s confidence and show them that they are capable of more than they realise.

If the sufferer is worried about financial issues then discuss these with him/her. Mention about the various social security benefits which they may be entitled to. Also mention about car parking permits such as a disabled badge which will enable them get out and about.

Role of the carer

What will your role be as a carer? If you are new to the role of a carer then it may seem a bit daunting but the main thing to remember is that you are providing a helping hand.

But you are also allowing the sufferer to retain their dignity and independence.

Someone with arthritis will require help but they will also want to do things for themselves so the idea is to understand where the line is between these two and not crossing it.

Even though it may be tempting on occasions to step in and take over, it is better than you avoid doing so. The sufferer will feel resentful of your taking control and not allowing them to undertake even the smallest of tasks. This is an important issue to remember, even if the sufferer takes what appears to be a long time with a simple task.

Plus the arthritis sufferer may be lacking in confidence and self-esteem so the last thing you want to do is to reduce that even further. Your role is to encourage them to do things for themselves which will act as a boost for their confidence.

Examples of tasks

Here is a list of tasks that you will be expected to help the arthritis sufferer with. You may have to help with some or even all of these tasks.

They include:

• Personal or intimate care: washing, dressing, toileting etc
• Everyday care: cooking, shopping, cleaning etc.
• Admin: paying bills, dealing with correspondence, finances etc.
• Medical care: help with taking medication, visiting their GP, specialist etc.
• Aids: help with specialist equipment or adaptations, e.g. walking stick, wheelchair, tap levers, hand rails around the home.
• Benefits: advice about social security benefits and other grants.
• Friend: someone who is there as a sympathetic shoulder and to provide support and advice.

This also includes acting as a motivator in regard to taking exercise, eating healthily and discussing any negative issues/emotions with you.

There will be many a time you feel tired, stressed and frustrated but try not to let this show. The sufferer will quickly sense if you are impatient or frustrated with them which will make them feel they are being a burden to you.

Looking after yourself as a carer

It is important that you do not neglect your own needs whilst looking after someone else. This can be a stressful and demanding role which if you are not carefully, can affect your own health and general wellbeing.

It is rewarding role and one that many people get a huge amount of satisfaction from. But, you need to take time out for yourself on occasions.

There are networks that can help but don’t forget your family and friends. Do not cut yourself off from others but socialise with your friends and undertake some form of activity. Exercise can help or try a new hobby.

Accept that there will be times when you feel frustrated or tired. This is an entirely normal reaction and means that you are basically, human. Allow yourself to feel like this and try and do something to take your mind off this.

Go for a walk or a swim. Have a day out with your family or go to the cinema with friends.

You may find it helpful to talk to other carers. There are support groups which cater for this and enable you to share any concerns with others.

If money is an issue then you may be able to claim Carer’s Allowance. This is normally payable to a person who is looking after someone in receipt of Disability Living Allowance or Attendance Allowance. Speak to someone at your local benefits office or contact the DWP.

You may be able to obtain help with your caring role from your local social services department. They will carry out a carer’s assessment which will look at your role before deciding upon the amount of help you need.

To reiterate: aim for a balance between your role as a carer and the needs of you and your family. This is never an easy thing to do but it is important that you do so to avoid stress and burnout.