Letting go without giving up: Conclusion and further reading

You never get used to it, it does not get any better but stay involved at what ever level you feel comfortable with - you have a unique contribution to make to the remaining life and eventual death of your loved one
- Carer

You have given all the direct care and support you've been able to over the years. Visiting and staying involved is part of continuing that care and support. If you have been providing care to someone with dementia for a number of years, you are the expert in that person's care and have a great deal still to contribute, especially in the early stages of the person's stay in the care home when staff need to get to know and understand the person.

Why is it so hard to let go?

Caring for someone with dementia has been likened to working a 36-hour day so it stands to reason that removing that workload will leave a huge gap in a carer's life. You will have to contend with a range of emotions resulting from the decision for the person to move to a care home, particularly if it takes the person some time to get used to his or her new surroundings. Because the caring relationship has changed, the person you love may start to become more of a stranger to you; as their condition worsens, you may feel that you now have to do all the giving, as they can no longer share their emotions and feelings with you in a meaningful way and it becomes difficult for them to focus on anyone apart from themselves. It is the very essence of the illness that robs you of the person they were but does not rob you of your memories nor of the desire to keep caring for the person.

How do you cope?

Each person copes in different ways and no-one should feel pressurised into acting or reacting in a particular way. You should do what feels comfortable and right for you. Some people want to visit every day; others find that they feel happy visiting less often, particularly as the person settles in. Talking through your feelings with family and friends may help, or you may prefer to talk to other carers who have shared similar experiences. It may help simply to remember what a special person he or she is and that he or she still needs your love and support in what may be their final journey.

Who is there to support you?

Ask family and friends for help, explaining how you are feeling; share your feelings if possible with the staff in the care home or with members of a local carers' support group; contact the Dementia Helpline on freephone 0808 808 3000; talk to health and social care professionals.

What services would be useful?

Some carers have spoken about the support which they received from social work and health care staff while the person with dementia was still at home, but this support vanished once the person entered a care home. While it may not be possible for these professionals to continue to offer the same level of support to someone no longer providing direct care, they may still be willing to offer support, perhaps over the phone, or may be able to put you in touch with other sources of support such as your local Alzheimer Scotland service. For example, in Dumfriesshire, Alzheimer Scotland has a Carer Liaison Officer whose role is to support bereaved carers or carers whose relative has moved to a care home. There are similar posts in other parts of the country.

There may be courses in your area aimed at former carers involving learning a new activity, social and cultural events, reviving old interests. Younger carers who have perhaps given up work to care for a parent may wish to return to the workplace but may need some support in order to be able to do so. You can find out what services are available in your area by contacting Carers Scotland or the Princess Royal Trust for Carers – see the section "Further Reading and Sources of Information", below.

Getting back on your feet

Although you may feel very tired after someone dies or goes into long-term care, the time will come when you are ready to re-establish your own life and move forward. You may feel very unconfident at first and find it difficult to take decisions, make polite conversation or cope with social gatherings. But don't give up. Your confidence will gradually return.

• Take things slowly and try to ensure that you have plenty of support from family and friends, professionals and other former carers.
• Keep interests/hobbies/friendships going if you can. You can use these to help you adjust to when you are no longer providing day-to-day care

Further Reading and Sources of Information

ALZHEIMER SCOTLAND. A Positive Choice: choosing long-stay care for a person with dementia. Edinburgh: Alzheimer Scotland, 2003.
ISBN 0 948897 39 2
For a copy, contact the 24-hour Dementia Helpline on Freephone 0808 808 3000. A single copy is free to people with dementia and carers in Scotland; others pay £2.00 per copy (post & packing free)

MACKINLAY, M. Working with Dementia: a handbook for care staff. Edinburgh: Alzheimer Scotland, 2004. ISBN 0 948897 42 2
Single copies are free to care staff. For a copy, contact the 24-hour Dementia Helpline on Freephone 0808 808 3000.

Sources of Information and Support

Care Commission
Headquarters
Compass House
11 Riverside Drive
Dundee
DD1 4NY
Tel: 01382 207100 or lo-call 0845 603 0890
>Website: www.carecommission.com
The Care Commission regulates and inspects all care services in Scotland, including care homes, using the National Care Standards to ensure that service users receive the same standard of care wherever they live in Scotland.

Carers Scotland
91 Mitchell Street
Glasgow
G1 3LN
Tel: 0141 221 9141
E-mail:info@carerscotland.org
Website: www.carerscotland.org
Carers Scotland is the Scottish national office of Carers UK. It campaigns for a better understanding of the issues affecting and services needed for carers under three themes: equality, empowerment; and partnership.

Cruse Bereavement Care Scotland
Riverview House
Friarton Road
Perth
PH2 8DF
Tel: 01738 444 178
Fax: 01738 444 807
E-mail: info@crusescotland.org.uk
Website: www.crusescotland.org.uk
Offers free information and advice to anyone who has been affected by a death; provides support and counselling one to one and in groups; offers education, support, information and publications to anyone supporting bereaved people.

Princess Royal Trust for Carers
Charles Oakley House
125 West Regent Street
Glasgow
G2 2SD
Tel: 0141 221 5066
E-mail: infoscotland@carers.org Website: www.carers.org
The Princess Royal Trust for Carers was formed in 1991 at the initiative of Her Royal Highness The Princess Royal. The Trust provides training and support for 29 Carers Centres across Scotland, as well as raising funds for development work.

Relatives & Residents Association
24 The Ivories
6-18 Northampton Street
London
N1 2HY
Tel: 020 7359 8136 (Advice Line)
Fax: 020 7226 6603
Website: www.relres.org.uk
The Association aims: to offer support and information to families, friends and residents about issues affecting care homes or nursing homes; to further an active partnership between relatives and care homes; and to spread good practice in residential and nursing care and influence policy and standards. The advice line is best contacted between 9.30 and 4.30, Monday-Friday. Remember that there are differences between Scotland and England in legislation and regulations if you are seeking information about legal and financial aspects of care home provision.

Single copies of this publication are free to people with dementia and their carers (phone the 24hour Dementia Helpline - 0808 808 3000).

This publication costs £2 (UK p&p free)
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Letting go without giving up: continuing to care for the person with dementia