A positive choice: Managing the move

Practicalities

Among the practical issues you will need to arrange are:

• packing
• moving furniture if the person is taking it
• putting name labels on clothes
• compiling information to help care staff – for example, photographs and notes of who’s who in the family and information on the person’s needs, likes and dislikes, such as food preferences, dressing habits and daily routine
• arranging extra security if the house is left empty, and organising insurance (most home insurance is invalid if a house is not occupied, so talk to the insurance company about special arrangements).

The transition

Unless it is an emergency admission, it is a good idea to visit the home you have chosen before the move. For example, visit for tea a few times if you can.

On the day of the move, try to make sure that when you leave, the person is occupied in something positive, such as a meal.

We took her favourite music with us and made sure it was on when she arrived
- Daughter

Get someone to go with you if you can, to support you and for you to spend time with when you leave.

Your own feelings

I was too wrapped up in concern and planning for her to be OK to think about how it would be for me. I had no idea what it was going to do to me – it was awful to be reduced from daughter and primary carer to visitor. It took a few months to come to terms with it.
- Daughter

The move may be difficult for both you and the person you care for. The person is likely to feel upset at being left and you may find this experience harrowing. Many carers feel that they have lost their role in the person’s life, as though they have been deprived of caring. They may feel that the person’s move leaves a huge gap in their own life.

We’ve been married 54 years - even ten months later, I still feel as though he’s in the house if I hear a noise.
- Wife

The person’s children may feel loss too in seeing their childhood home sold. Many carers feel guilt – perhaps because they feel they ought to still be caring, or as though they have betrayed the person.

You may continue to wonder if you have done the right thing. Deciding that someone should move into long-term care can be a very difficult decision. You have made a choice based on balancing what is best for everyone involved. Don't keep your feelings to yourself. Talk to friends or relatives, speak to other carers in a support group, speak to staff at your local Alzheimer Scotland servicefind your nearest Alzheimer Scotland service or call the Dementia Helpline (0808 808 3000) at any time for to talk confidentially.

There are positive effects too. Your life will no longer be centred around the practical tasks of caring or organising help. You may feel less stress. You may feel that you have the freedom to do things for yourself, or go out when you want. You may be more able to sleep. You may find the lessening of your responsibilities a relief – especially if you or the person with dementia is ill, even with a minor ailment. When most of the practical caring tasks are being looked after by the staff, you may find that your time with the person can be more relaxed and enjoyable, especially as time goes on.

The feelings of the person with dementia

Even if the person can’t express feelings and wishes verbally, he or she may still be upset at leaving home. Try to understand and accept his or her feelings. Give the person a chance to say goodbye to his or her old home if you can. Try reassuring the person that you will be visiting regularly, taking him or her on outings, and so on.

Talk to staff at the home and other professionals who know the person. They may have ideas on how to help both you and the person get used to the change. Sometimes the home may be familiar to the person from respite breaks, which can help him or her to feel more settled.

Once in the home, the person may take some time to adjust. Don't be surprised if he or she seems very down for the first few weeks. But some people settle in quite quickly.

The home’s very good, very caring and homely. He’s a Gaelic speaker and in this area everyone knows everyone else. Though he doesn’t realise where he is, he says, ‘this is a good place,’ every time I go up.
- Wife

At first, you may find visiting difficult. It does become easier after a while, so try to persist. In fact, many people find that their relationship with the person that they have cared for improves after he or she goes into a home. With the pressure off, you may be able to bring back the outward signs of loving and affection which may have been covered up by the stress of day-to-day caring.

Ask staff how the person seems when you’re not there; it may be that he or she remembers what has changed more when familiar people visit, and is settling in quite well the rest of the time.

Settling in

There are some ways of making it easier for the person to settle in.

We took transitional objects to try to help her feel more secure in the first few days. For example, her unwashed pillow slip and nightie, for a familiar smell, and her old sofa, because she was used to it and sat there all the time. Smell is especially important to my mother because she’s blind.
- Daughter

Try to involve the person in the move if you can and it isn’t too distressing for him or her. Help him or her to choose familiar things to take along. These might be small items such as photographs or ornaments, or larger things such as favourite pieces of furniture.

Be prepared, however, for the person to feel very unsettled. Often someone with dementia asks to go home. Sometimes he or she will make this wish clear to family and staff alike, and sometimes it may only be the family who hear it, because the person doesn’t want to confide in strangers or seem impolite to them. It is a good idea to discuss with other family members how you will respond if the person asks to go home. It can help you be consistent, and to feel a bit more prepared for what one carer called ‘an emotional body blow’.

If she asks to go home, we’ve all agreed to remind her of the decision that was made, that we’re worried about her safety, and that she has friends of her own age there. But in self-protection, often we side-step the question, ending visits by saying, ‘We’re just going to visit so-and-so,’ so that she won’t ask.
- Daughter

Care plan

The home should draw up a care plan. This plan will cater specifically for the needs of the individual person. The care plan also gives you the chance to say how much you want to be involved in the person’s care. If the local authority is involved it is a good idea to involve the person's social worker in the preparation of this plan and in monitoring it to ensure that it is being properly followed. The plan should also be reviewed from time to time, as the needs of the person are constantly changing as his or her condition changes.

You can help the home by providing them with as much information as you can about the person you care for, including a potted history of their life and information about any habits or preferences which they might not otherwise know about. With this information the home is much better equipped to treat the person with dementia as an individual.

Staying involved

Many people find that once the person they care for goes into long-stay care, the quality of the relationship improves. There are many opportunities to stay involved with caring for the person, yet you no longer have to look after every little task.

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

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 what’s right for you
• keeping the person informed about family news
• helping him or her reminisce, perhaps with photographs or a ‘life history book’ of reminders of important events in his or her life
• outings – to shops, to tea or to visit friends, for example
• helping in the home with some of the person’s day-to-day care or at mealtimes
• choosing new clothes and personal items.

I try to arrange that he goes in to hear the church service – he still loves the singing.
- Wife

Think about what you would like to do and what you would rather not do. Don’t worry if your feelings change as time goes on. This is normal. You can become more or less involved as you wish, secure in the knowledge that the person is safe and cared for.

Another Alzheimer Scotland booklet, Letting go without giving up: continuing to care for the person with dementia, considers the impact of the move to a care home on both the person with dementia and his or her carer. It suggests ways that carers can establish new caring roles for themselves through visiting and working as partners with care home staff. For a copy, contact the Dementia Helpline on 0808 808 3000.

It’s a while ago but I still go to the Alzheimer Scotland meetings and I still visit the home where he died once a week, as a volunteer – they looked after my husband and I want to do something for them. You can blether about anything and I enjoy it! I think it’s good for me too.
- Wife

Difficult visits

Many people find visits difficult when the person with dementia is no longer able to join in conversation. Some ideas for making your visit enjoyable for both of you are:

• try looking at old photographs and mementos together, to remind the person of his or her life – he or she may have a life story book which you can use for this (but this may not always go on being suitable)
• hand massages can be relaxing and comforting
• the person may appreciate physical contact such as cuddles
• try putting on some familiar music to share together
• try keeping your visits short – 10 minutes may be enough for both you and the person with dementia.

Sometimes, visits can be very difficult to cope with emotionally - if the person with dementia is weeping or angry, for example. If this happens:

• talk to the staff and find out how the person is at other times
• try varying your visit times – for example, perhaps the person may feel better in the mornings when he or she is not as tired
• visit just before a meal so that the person has something to go on to.

Sometimes staying involved can be difficult – for example if the person is always distressed when you see him or her. One carer said it felt harder than coping with a bereavement. Don’t blame yourself if you find this hard – it’s a normal reaction. Seek support, from other carers through a support group, the Dementia Helpline, your local Alzheimer Scotland service or friends.

At the end

At the end of his or her life, the person should be kept comfortable and not in pain. If the person had any beliefs or preferences about dying, talk to the home to make sure they are aware of this. The person may even have put in writing the types of treatment he or she would or wouldn’t want to receive. This is called an advance directive (or sometimes a living will).

Seek support for yourself – from friends, family, support organisations such as Cruse (See Further information part five), your minister, priest, rabbi, imam or other religious leader or teacher and the Dementia Helpline.

What happens if the home is not satisfactory?

The first thing to do is to speak to the management of the home itself. It may just be a case of adjusting the person's care plan or something equally simple. Don't feel afraid to express your views. After all, the home is being paid to look after the person, who is entitled to receive the best care possible. Every registered home must have a complaints procedure which you can follow if the problem is not sorted out.

If you are still not satisfied, you can complain to the Care Commission. A leaflet called 'How to use the Care Commission Complaints Procedure' is available from the Care Commission to advise you how to make a complaint. Ring the Dementia Helpline to talk over the problem and for information on how to complain.

Normally, you should use the care home’s complaints procedure first, and if you are not satisfied with the outcome, complain to the Care Commission. However, if you feel particularly vulnerable you can complain directly to the Commission, anonymously if you wish, without having to use the home’s procedure.

If the local authority organised the placement, you can also speak to the social work department. They have a complaints procedure which you can follow. The social work department may be better able to discuss the problem direct with the home. If the problem is due to the condition of the person with dementia changing then you can arrange for a new community care assessment to see if the person's needs have changed.

Some people are anxious that if they complain, the person with dementia may suffer. If this worries you, call the Dementia Helpline or someone you trust to talk things over before you decide what to do. Maybe you would prefer to complain to the Care Commission rather than the home itself.

Finally, it is important to remember that no home is going to be perfect. But if you satisfy all your worries before the person enters the home then you will be able to relax and concentrate on enjoying your relationship.