Grief is an emotional response to loss, for example, the loss of a relationship, moving house, loss of good health, divorce or death. If someone close to you develops dementia, you are constantly faced with the loss of the person as they used to be, the gradual loss of the person as your companion and loss of the relationship. You are also likely to experience grief at the loss of the future you and your partner had planned together. Perhaps you had looked forward to spending more time sharing activities in retirement and feel that you have been robbed of this opportunity. Or, if it is your parent, you may feel distressed that you have lost the feeling that you could rely on that person and that now you have to behave more like a parent to them.
You are likely to experience a range of very different and often quite extreme emotions associated with grieving. This is particularly difficult because as dementia gradually causes the person's abilities and personality to change, the nature of your relationship will also change. No sooner have you adjusted to certain changes than further changes will occur and your relationship changes yet again. There is no simple way to deal with these feelings, but understanding that what you are feeling is completely normal may help. Coming to terms with the changes in the early stages of the person's illness may cause you to swing between despair and false hopes that the person will improve or that a cure will be found overnight. Later you may come to accept that the condition is irreversible, though this may not always make it easier to bear. You may find yourself looking back to an earlier stage of the illness when at least the person was more responsible.
However willingly you assume the task of caring, you are bound to feel saddened by the restrictions this places on your own life and by the fact that things have not turned out as you had hoped. You may be forced to curtail your work or social activity and miss the variety and stimulation in your day, or you may find you have neither time nor energy to pursue a particular interest. This may cause you to feel resentful.
Grieving is an up an down process: sometimes you may feel that you are coping well and making the best of things. At other times you may feel overwhelmed by sadness, anger, resentment or guilt, or you may feel simply numb. Many caring relatives are shocked to find that they sometimes wish the person were dead.
These feeling are normal and it is important to realise that you are under a great deal of stress. You should seek emotional support for yourself and express your feelings rather than bottle them up. Don't feel that you are being disloyal by doing so.
Talking to an understanding professional such as a counsellor or your GP, to other caregivers, to a trusted friend or to members of your own family can make all the difference. Allowing yourself to cry when you feel like it can also help to relieve your tension as long as you do so away from the person since this is likely to confuse and upset them.
You may be in the position of having to care for someone with whom you have never got on or who has become very difficult to live with. This can cause even greater feelings of resentment, anger, frustration or guilt. Find someone with whom you can honestly discuss your feelings and how you can best tackle the situation: this is crucial for your own well-being.
Caring for someone with dementia can be emotionally and physically exhausting. Remember your own needs, too. It is important that you do not become totally immersed in caring. Ask for help at an early stage. Your doctor can assess your person with dementia and put you in touch with local services which may be able to support you in keeping them at home for as long as possible.
If day care is available, it may mean you can continue with your job or other normal activities and this will be of benefit to you both. Otherwise, regular breaks from caregiving several times a week will help you keep in touch with the outside world.
Because the person looks so normal, other people may not understand the pain you are experiencing and may not think to offer support. You may need to explain the situation to them and let them know how they can help. Dropping in for a chat or making regular phone calls may ease your loneliness and raise your morale. A hug may go some way to compensate for the affection that the person is no longer able to give you. You may find it helpful to join a Support Group where you will meet other caregivers in a similar situation.
The sadness you feel may easily slip into depression which is much more difficult to deal with. If you have been feeling low or anxious for some time, or if you are very tired or unable to sleep, see your doctor for advice as soon as possible.
If the person goes into hospital or residential care in the later stages of the illness, you may feel guilty that you have not been able to keep them at home for longer, even though you know you have done everything you can and the decision is best for everyone concerned. You may also feel grief at yet another change in your relationship. Relief that the burden of care is lifted may be clouded for a time by feelings of emptiness: you will probably miss the person's presence, even though they have not been themselves for a long time. If your relative is experiencing difficulty in adjusting to the new environment, this will also add to your feelings of distress.
The person may become unable to communicate or respond to you and may even fail to recognise you. For many people this is the most painful experience of all. You may feel that your relationship is over but you cannot mourn because the person is still alive. If the person is no longer at home, try to continue visiting.
After the person's death you may experience all the emotions associated with bereavement. How people cope with bereavement varies from person to person but most people pass through certain stages. The first reaction is usually shock, even if the death has been expected, and you will probably feel numb - avoid making important decisions at this time.
In the next stage your thoughts may become preoccupied with your relative and you may feel unable to accept what has happened and expect them to reappear. Do not be surprised if you have feelings of anger and guilt. You may also feel depressed, alone and exhausted. These are all normal feelings given the circumstances. Give yourself time to get back on your feet - even when you feel you are coping well, there may still be times when you feel upset and depressed, particularly during the first few years.
Many people take comfort from the fact that in time, after the grieving process is complete, they are again able to remember the person clearly as they once were before the illness set in.
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