Letting go without giving up: Practical ways to stay involved

Preparing for the period after the person has settled in is just as important as preparing for the move. It can be an emotional time with mixed feelings such as relief, guilt and grief at the separation. Your daily activities suddenly change.

Many people believe that full time residential care will remove them from the caring role. The fact is you are still caring. You don't stop caring just because you no longer do the physical tasks of caring. Allowing others to take responsibility for the practical caring tasks does not lessen your role as a carer. You are the 'expert' when it comes to caring for your relative.

Your role now is to work with care home staff to inform, advise, recommend, make decisions and encourage the best possible quality of care for your relative. You can also continue to contribute to the physical care of your relative if you want and to the extent that you want.

The care home should involve you in caring for your relative by:

• asking you for information about your relative's family background, past employment, activities and hobbies, likes and dislikes, language, religion, culture, etc.
• encouraging you to make your relative's room as home-like as possible
• working with you to develop a care plan for your relative which sets out his or her care needs, goals, strategies and actions to ensure those needs are being met
• reviewing the care plan with you regularly
• informing and consulting you about management of your relative's condition
• consulting you about issues such as the time your relative likes to get up and go to bed, bathing times, what they wear, what they eat, when they have their meals, and so on. These preferences should be accommodated as much as possible within the home's routines
• encouraging you to read your relative's day to day notes or communication book
• greeting you on arrival and saying goodbye
• inviting you to attend relatives' meetings where the day to day running of the home is discussed, although not all homes have such meetings
• informing you about the person, not just when they are ill but about good things such as achievements, outings they have been on, how they relate to other residents and staff, and so on.

If the home does not actively promote involvement from relatives you should speak to the manager or person in charge about how you wish to be involved and ways they can help you to do this.

Relatives should be seen as an asset.

Some relatives report that they feel resented when they try to continue aspects of day to day caring such as helping with meals, taking the person to the toilet or taking the person outside for a walk in the garden. Staff may feel that it is an implied criticism of them while the relative may see it as simply carrying on doing something they have always done.

One argument against relatives getting involved with personal care is that they may not be covered by insurance if any accident took place. It might be possible for homes to offer appropriate training or the home could ask the relative to sign a disclaimer against them sustaining an injury.

Pressure on staff may mean that some tasks like cutting finger nails, applying make up or sewing on buttons are hard to fit in to the daily schedule. These are tasks that relatives may be delighted to help with, to the benefit of all concerned.

In other cases, staff may have difficulties persuading the person to maintain adequate levels of hygiene. A relative might be able to persuade the person by helping with bathing.

Care planning

The care plan should be a detailed document setting out an individual's care needs, considering the person as a whole rather than a set of symptoms or problems. The plan should be updated and reviewed regularly, to reflect the person's current situation. Relatives have a significant role to play in giving information about the person's social, emotional, spiritual and cultural needs as well as their likes and dislikes and preferences. If you have been caring at home for some time, you can also contribute valuable information about the person's medical and nursing needs, although this contribution may lessen as time goes by and the person's condition changes.

Monitoring Personal Expenditure

In calculating the amount to be contributed by an individual towards their care home fees, the local authority has to allow the resident to retain a Personal Expenses Allowance (PEA) of (currently) £21.15 per week (£21.90 from April 2009). Residents should not be asked to put their PEA towards meeting the basic cost of their care but carers should check with the home what services are included in the fee charged – will the resident be expected to pay for items such as hairdressing or outings, for example? The PEA is intended to buy items such as personal toiletries, small gifts and clothes but carers may wish to add to this sum to enable residents (or care home staff on their behalf) to buy extras such as food treats.

A carer may already have been involved in recording the person's preferences for things like toiletries and food in the personal profile which will help care staff to know what items should be purchased on a regular basis. But carers may want to be consulted about larger items of expenditure on, for example, clothing and may want to keep track of any accounts set up for the resident's personal expenses.

Letting go without giving up: continuing to care for the person with dementia