Letting go without giving up: Emotions

Deciding that someone should move into long-stay care can be a very difficult decision to take. In many cases, this decision is made after a period of reflection and investigating choices of care home. You have made a choice based on balancing what is best for everyone involved. In other cases, a crisis of some sort may lead to your relative being admitted to a care home very quickly, without giving everyone time to prepare properly. Whatever the circumstances, you are likely to feel that you are riding on an emotional rollercoaster. This section explores the common range of emotions felt by carers and suggests some strategies for coping.

Guilt

You may feel guilty that you have not been able to keep your relative at home for longer even though you know that you have done everything you could and that the decision is the best for all concerned. Feelings of guilt may be particularly strong if you have promised your relative, a now-deceased parent or a friend that you would never put them in a care home.

If the person has problems settling in to the home, this will add to your own distress and feelings of guilt. You may wonder if you have made the right decision? In time, the person may become unable to communicate with you or respond to you, and may even be unable to recognise you. This can be the most distressing experience of all.

Feeling guilty for not feeling guilty

It can be difficult for carers to be honest about their feelings when their relative enters a care home. If you believe you are expected to feel guilty and to admit to anything else would seem wrong, then you may not be willing to say you feel relieved. There are no right or wrong feelings. Some people feel guilty, some don't. Some may have guilt put upon them by others.

Possible reasons for guilt and suggestions for coping:

• You may have had unrealistic expectations of your ability to cope or the toll that caring would have on you
• You may feel guilty because you sometimes wanted to walk away from your responsibilities to the person and now you have done so
• You might feel guilty that you never liked the person and they now seem so helpless; maybe I could have tried harder to like them?
• Maybe the person who has dementia used to criticise you in the past or always made you feel inadequate, so even now nothing you do can seem right
• You may have promised the person in the past that you would always look after them at home. Now you have been forced to break that promise.

Most carers have experienced similar thoughts and feelings and, in the circumstances, they are quite normal. It may help you to talk them through with someone who understands – this could be a professional, member of a carers support group or a good friend.

Anger

You may find that you feel anger towards the person with dementia for leaving you to cope on your own, even if you have had to take most of the responsibility for the day-to-day running of the home, the family finances, home repairs, and so on, for some time.

You are now responsible for everything in the house – it's down to you – finances, repairs, decisions. Even if you've been doing all these things for years you still realise you're on your own now that your relative is in a care home.

The anger you feel may be directed towards care home staff – if you can no longer care for the person, you are going to make sure that the home gets it right.

People need to be allowed to be angry – find someone you can safely express that anger to; or go somewhere where you can shout or "throw stones in the sea".

Grief, Loss, Loneliness & Bereavement

You may feel grief at yet another change in your relationship with the person. Rather than feeling that the burden of care has been lifted you may feel emptiness – even if your relative has changed through the course of the illness, you will still miss their presence in your life.

Sense of loss

A sense of loss is one of the most powerful feelings that carers experience.

Depending on your relationship with the person and your individual circumstances you may grieve for the loss of:

• the person you once knew
• the future you had planned together
• the relationship you once enjoyed
• their companionship, support or special understanding
• your own freedom to work or to pursue other activities
• finances or a lifestyle which you once took for granted.

Loneliness

You may also feel a strong sense of loneliness caused by:

• going home to sit on your own
• having no one to talk to
• seeing other couples
• missing the person
• feeling on your own.

It is important to acknowledge these feelings and not to feel the only one who may feel like it.

Bereavement

Even though your relative is still alive, you may feel a sense of bereavement at the loss of the person they once were and the loss of your relationship with the person, yet feel unable to mourn properly. There have probably been several stages during the course of your relative's illness when you have experienced feelings of loss and the period when your relative enters a care home will mark another type of loss. This sense of loss may be lessened by care home staff recognising you as the expert in the person's care and involving you in the planning and delivery of care to your relative.

Assumptions about different types of carers

After a person with dementia enters a care home, relatives commonly struggle to adjust to changes in their relationship with the person, changes in their role and changes in the pattern of their day. The impact of these changes will differ from person to person. Some might assume that the impact would be greatest on husbands, wives or long-term partners but adult children, particularly those who have continued to live with their parent, can also feel a great sense of loss.

Not all caring relationships are loving ones. You may have had a difficult relationship with your relative before he or she became ill; the illness and the need for you to take on the caring role may have meant that a lot of issues have never been resolved. You may need help to work through your feelings through counselling or therapy – see Section 12 for sources of further support.

When the person goes into long-term care you may grieve at another change in your relationship. The relief which you might feel initially may be replaced by feelings of loss and grief, mixed up with guilt, which can last for a surprisingly long time. You may miss the person's presence and may experience feelings of emptiness. You may feel very tired, both physically and emotionally.

What might help

• Try to take it easy until you feel your energy levels rise again.
• Give a structure to your day which may help you get through the difficult early months.
• Not everyone is the same, but don't fall into the trap of building your life around visiting the person in their new home. You need to build a new life for yourself which includes these visits.
• Talk about your feelings to an understanding professional, to other carers, to a trusted friend or to supportive members of your family. Don't bottle your feelings up.
• Call the Dementia Helpline 0808 808 3000 at any time to speak, in confidence, about how you are feeling
• Speak to staff at your local Alzheimer Scotland service
• Try to persuade friends to drop in for a chat or to phone you regularly

On the day of the move

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 very harrowing. Many carers feel that they have lost their role in the person's life, as though they have been deprived of caring. You may feel that the person's move leaves a huge gap in your own life.

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

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

Comments from carers about how they were affected

Sending back his driving licence, throwing out his library card – it's as if he's died but he hasn't

I didn't think I would grieve – I thought I'd lost him years ago – but now I'm grieving for this other person

Depends on what kind of relationship you had with the person before – if only I'd ….

Emotions change from day to day or hour to hour.

I feel deep sorrow for the person and what they've lost.

Now my husband is in care, everyone asks how he is not how I am.

You need to forgive yourself

Carers find different ways of coping. Some find carers support groups particularly helpful since it is possible to speak to members about things you might not want to discuss with your children or other members of the family; however, where the group includes some carers who are still looking after their relatives at home, it can make you feel inadequate – why couldn't I cope if they can?

Does it get any easier to cope? For some, not others.

Looking on the bright side

You may find that there are positive aspects to your changed circumstances. Your life will no longer be centred round the practical tasks or caring or organising help. You may feel less stress. You may feel that you now have the freedom to do things for yourself, or to go out when you want to. You may get more sleep. The lessening of your responsibilities may come as a relief especially if you or the person you care for is ill, even with a minor illness. You may also find that your time with your relative can be more relaxed and enjoyable if you no longer have to deal with many of the practical caring tasks now carried out by the care home staff.

Establishing a relationship with care home staff

Quite often, carers are asked to stay away for the first week or so to allow the person to settle. This is generally not held to be good practice – it is important for the carer to maintain contact, the carer knows the person best. It's a traumatic enough time without feeling excluded. If the home suggests staying away, discuss it with them and go with what feels right. Alternatively, you could stay away but phone in regularly to check.

Some carers find that being asked to stay away for a few days sends a message that they are no longer expected to play a significant role in their relative's life.

We'll take over now – you have a rest

This may be well-meaning, but can establish a role for the relative which is hard to adjust at a later date.

Often staff-relative relationships are established very early on. The initial welcome when the person with dementia moves in can make all the difference for future relationships. Being met at the door, shown to the person's room, introduced to staff and other residents, and being given a cup of tea can all be important in reassuring you that you have made the right choice.

You may feel all sorts of conflicting emotions, alternating between feeling reassurance that your relative will receive appropriate care and despair that you are no longer able to provide that care. The focus on your relative may leave your feelings rather neglected.

They were lovely and that made me feel better. Because it is an emotional experience. I've been responsible for him for the last six years and to suddenly let go and hand him over to somebody else. I shed quite a few tears over it.
- Daughter

Other relatives may find that their feelings are not acknowledged.

I think there's a lot that someone could have said. "How are you feeling about this?" "How is it affecting you?" "Are you coming to terms with it?"
- Son

An alien environment?

The difficulties experienced by relatives in making decisions about placing the person in a care home do not necessarily end when you find a suitable home. A care home is generally an unfamiliar environment for both the person with dementia and the carer - the people and the surroundings are strange and no-one is quite sure where they fit in or what the rules are.

It is important to try and make the new setting as familiar as possible to the new resident and relatives, at the same time establishing new relationships with staff and helping staff become familiar with the needs of the person and the family. Taking familiar pieces of furniture for the person's room, putting up familiar pictures, ornaments or other memorabilia and familiar music can all help make the new home less unsettling. Ensuring the family are given time to help settle the person is also important.

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