Letting go without giving up: Visiting

Visiting is the main way in which you can maintain close contact with your relative, yet visiting can cause all sorts of difficulties which need to be treated with sensitivity. You have been living with or caring for the person for many years, in some cases for a lifetime, so the concept of visiting is unfamiliar. You have to rely more on talking to the person, whereas before you would have done things together. You are uncertain about what to expect in the new surroundings of the care home. You want to do the right thing and not cause any upset to the staff, while at the same time making sure that your relative receives the standard of care he or she needs. This section considers how often you should visit, offers suggestions for activities during visits, including during the later stages of the illness, and how to manage leaving.

Making the decision to find residential care for the person with dementia may be one of the most difficult decisions you have to make. You may feel guilty about not having been able to care for them right to the end at home and feel that you are abandoning them. However, it is important to bear in mind that what you are doing is in the best interests of everyone concerned. Although, it may be difficult to handle at first, the person will benefit from full time professional care.

You can still visit regularly and may even find that as time goes on, your relationship improves, as you are no longer under such strain. You might find it difficult to see the person with dementia being cared for by other people and feel somewhat excluded. This is why it is important to visit regularly and if possible to remain actively involved in the person's care. You could, for example, assist at meal times, comb the person's hair, give them something to drink and help to make them comfortable. In this way you will be helping the staff as well as carrying on caring for the person with dementia

At first, you might find visiting difficult but it generally becomes easier after a while so try to persist. Many people find that their relationship with the person they have cared for improves after he or she enters a home. With the pressure off, you may be able to bring back the outward signs of loving and affection which may have been suppressed by the stress of day-to-day caring.

I visited any time. I could go in and give him his lunch and tea
- Wife

Life Story Books

A life story book can combine photos with notes about the person's parents, brothers and sisters, children, work, places he or she has visited or lived in, favourite holidays, friends, hobbies, favourite foods, least favourite foods, colours, favourite films, music, likes and dislikes. Photos, post cards, scraps of material from old clothes or bedcovers and other memorabilia can be added to the story book.

Handy hint

It helps to use poly pockets or plastic covering for life story book pages – they will get handled a lot.

Don't feel you must do anything beyond what you would like to do, but if you feel you want to, some possibilities are:

• visiting the person – but don't feel you must visit every day or even every few days, if that isn't right for you
• keeping the person involved about family news
• helping the person reminisce, perhaps with photographs or a life story book of reminders of significant events and people in his or her life
• going on outings – to shops, to tea or to visit old friends, or a run in the car
• choosing new clothes and personal items
• helping in the home with some of the person's day-to-day care or at mealtimes
• bring newspapers and magazines to look at together
• play games that the person has enjoyed in the past
• help decorate and tidy the person's room
• bring others to visit
• bring pets, if allowed by the care home
• take in things that the person likes such as chocolate, crisps, or even a little alcohol if that does not conflict with any medication the person is receiving.

Handy hint

If the person likes to listen to music, try to find a waterproof personal stereo/CD player in case of spillages

Think about what you would like to do and what you would rather not do and don't worry if your feelings about this change over time – this is normal. You can become more or less involved as you wish, secure in the knowledge that your relative is safe and cared for.

Difficult visits

Sometimes visits can be hard to cope with emotionally if the person is, for example, weepy or angry. If this happens:

• talk to the staff and find out how the person is at other times
• try varying the times you visit – the person may feel better in the mornings when he or she is less tired
• visit just before a meal so the person has something to do after you leave.

Visiting in the later stages.

Many people find visits difficult when the abilities of the person with dementia decline and he or she is no longer able to join in conversation. Where this is the case, some ideas for making visits enjoyable for both of you include:

• looking at old photographs or mementos together to remind the person of his or her life
• massaging hands and perhaps feet with scented creams or oils can be relaxing and comforting. The scent of perfumes and flowers can also be enjoyed
• listening to some familiar music together
• having a cuddle or simply holding hands; a smile, a comforting gaze or a look of affection can often provide reassurance to the person with dementia
• visits from friends and relatives, even though they may not be recognised or remembered, can provide stimulation and comfort
• a stroll around the grounds, even if in a wheelchair, can be enjoyable for both of you
• keeping your visits short – 10 minutes may be enough for both of you
• taking things to hold and touch.

Don't get despondent when visiting - take pleasure in the small things - a smile, a laugh, a joke, a cuddle, a glimpse of recognition.

Don't stop visiting because you think there is no point because your relative doesn't appear to recognise you. Each day is different and it is difficult to tell what the person is feeling but care staff say people always appreciate seeing visitors. Live for the moment - it does not matter that the person won't remember your visit - you will have hopefully brought pleasure and happiness whilst you were there.

Activities

Consider things like:

• massage
• life story books
• photos
• objects
• sensory material – fabrics, smells, textures, music, going outside to the garden.
• Personal grooming – styling hair, giving a manicure, putting on nail polish
• Resource boxes: as well as individual's life story books, some care homes may consider making use of resource boxes which can be filled with items that can be used during visits to trigger off conversations or ease communication between residents and visitors. This could include books with photographs, postcards of tourist attractions, music tapes or CDs, videos of particular events, and even things like handcreams or other sensory material like fabrics. These can be inexpensive to put together and could encourage visitors to get involved.

Frequency of visits

There is no correct number of times that the carer should visit, or amount of time they should stay. The important thing is to make each visit as rewarding as possible and to do whatever you can manage and what feels right. Some people visit every day, particularly husbands and wives. But you should do what feels right for you – if visiting every day is stressful for you and upsets the person, then don't do it.

You might consider sharing the visits with other relatives and friends. Don't feel you can't take a holiday either because you would miss some visits or because you feel guilty when the person cannot do the same.

Leaving

Leaving after a visit can be a difficult time particularly if the person becomes distressed.

You might want to try:

• telling staff when you plan to leave so they can be there to help
• making your departure coincide with an activity or a meal
• keeping your goodbyes short and leaving straight away.

If the person wants to leave with you or gets upset when you leave try different tactics – vary the time of day you visit; vary the length of visit; maybe coincide your visit with just before a meal or when the person has something else to focus on.

Wanting to go home

A common phrase heard from people with dementia in care homes is "I want to go home" or "I don't like it here". This can be especially hard for carers who already feel guilty or upset about placing the person in a care home. Wanting to go home may be caused by feelings of insecurity, depression or fear. It may be that the "home" the person is talking about no longer exists. Instead, it may describe memories of a time or place that was comfortable and secure such as the person's childhood.

You might want to try:

• understanding and acknowledging the feelings behind the wish to go home
• reassuring with touching and holding and telling the person that they will be safe
• looking at photographs or talking about childhood and family
• distracting the person with food or other activities such as a walk
• not disagreeing with the person or trying to reason with them about wanting to go home.

The most awful part of the whole thing was dealing with John saying I'm coming home or leaving here next week

Where to conduct the visit

You may feel more comfortable visiting the person in his/her own room rather than a communal lounge. Visiting in a public place can cause a strain, particularly where the person may be hard of hearing or where other residents are receiving visitors. You may feel very inhibited about engaging in conversation in a residents' lounge. On the other hand, you might prefer to have the distraction of other people if your relative does not communicate.

You may feel reluctant to suggest that you move your relative to a more private area for your visit especially if you need assistance from staff to move the person. It helps if there are seating arrangements in the home to suit varying needs of residents and visitors. Some visitors might want to share a meal or a snack with the person which may require a small table to be set aside. Visitors may wish to come along at mealtimes – if arranged in advance and paid for if required, this may encourage the resident to eat more.

Home visits

Should you take the person home for a visit? There are problems with caring for the person although organisations like Crossroads may be able to provide support for a short visit. However, you do not want the person upset or disorientated by moving them around too much.

The person may get a feeling of comfort and pleasure from experiencing home, the garden, and familiar smells. Even if he or she doesn't remember the event, the good feeling may stay with him or her or they will at least enjoy it at the time.

I don't think I could cope with my husband coming home – it would be cruel for both of us, but it depends on those involved.

Visiting policies

If there are rules about visiting, relatives and friends need to know what they are. Are there certain times of day which must be avoided? Can you bring along a pet or small children? It could be frightening for children but many older people get great pleasure from seeing young children. You would have to gauge this for yourself – if the person gets pleasure from seeing the children, and the children are happy, then there should be no reason why they should not be involved.

Is there somewhere where visitors can make a cup of tea? If you have been told to treat the home just as you would if it was your mother's own home, then get ticked off for going to the kitchen to make a hot drink, how would you feel?

How you are received when you visit can make a big difference. If you ring the doorbell and it takes ages for someone to answer, then the person answering can't even exchange a few words with you, it can make you feel like you are intruding and less inclined to visit as regularly or for as long. Being greeted by a familiar, friendly face can make all the difference.

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