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Providing care in the later stages of the disease

Coping with caring


Introduction

Alzheimer’s disease has fully struck. My wife is just body, her spirit has died. Whether her soul still lives, I don’t know. I now take care of her and do all the household tasks. But, will I be able to continue until the end? Fortunately, despite the fact that I am 78, I am pretty fit. Also, some people have given me valuable support, both physically and mentally. I have to go on. Maria needs me more than ever.

Admitting to myself that I couldn’t go on looking after my partner was very hard. I now realise I struggled on far too long because I felt so bad about letting other people care for her. But now she’s in a nursing home quite nearby and she’s getting better care than I could manage on my own. And I feel much more relaxed. I visit her often and because I no longer have to do all the routine tasks I find I enjoy our time together.

You will have noticed as the disease progresses, that the needs of the person with dementia change, with certain kinds of behaviour becoming less of a problem and other new needs and behaviour emerging. In the later stages of the disease, you will find that the person’s needs are somewhat different in that they will tend to be of a more physical nature, e.g. problems with eating and moving. It is not unusual for the person to lose weight in the later stages of the illness and risk developing pressure sores. There is also an increased risk of developing bronchopneumonia. It might not be possible for the person to remain at home for the whole duration of the illness. Your doctor will probably suggest residential care if he or she feels that the person with dementia needs facilities and professional care that cannot be provided at home. Alternatively, you may have to admit that you simply cannot cope. There may also be people with dementia who decide on residential care themselves. This section is divided into two parts. The first part describes the kind of care that may be necessary in the later stages of the disease and the second part considers the issue of residential care.


How to cope with caring in the later stages of the disease

Call a doctor if the person with dementia seems to be in pain or if your have any doubts

As the disease progresses and the needs of the person with dementia change, you may be unsure about how to cope. As their ability to communicate may be greatly affected in the later stages of the disease, they will probably be unable to explain how they feel. You may therefore be unsure as to whether they are in pain. Therefore, if you have any doubts about what to do, whether the person is suffering and/or you need help managing, don’t hesitate to contact your doctor, who can prescribe medication to prevent nausea and vomiting, give painkillers and arrange for oxygen if needed.

The kind of physical assistance which may be needed

Moving about The person is likely to need a great deal of physical help in the later stages of the disease. (Please see chapter on lifting and moving the person with dementia.) They may also be confined to bed or a chair and eventually have difficulty lifting their head, swallowing and smiling. At this stage you might find it easier to install a bed in a room other than the bedroom (particularly if the bedroom is on a different floor than the main living area).

Eating Some people with dementia lose their appetite completely, whereas others seem to develop rather strange tastes. There is a risk of weight loss due to the disuse of muscles even if the person seems to be eating more or less normally. Although you should not worry too much about this, it is best to check with your doctor. Eating may become particularly difficult if the person with dementia has problems swallowing.

Drinking and dehydration Whether or not the person with dementia is eating well, you should make sure that they still drink a sufficient quantity of liquid. People can manage without food far longer than they can manage without water. Many people with dementia suffer from dryness of the mouth and the eyes. Their skin also tends to become extremely dehydrated and can be quite painful. You can help by spraying a little water into the person’s mouth, applying eye drops (artificial tears) and applying an alcohol free moisturising cream to hydrate the skin. Apply the cream very gently and don’t massage it in because the skin will be very sensitive.

Incontinence Whereas the person with dementia may have already suffered from urinary incontinence (wetting), they may suffer from total incontinence towards the end of the disease. You will therefore have to take care that they are washed and dried if this occurs. It would be a good idea to put a protective sheet on the bed, paying attention not to let the plastic come into contact with the person’s skin.

Making the person with dementia comfortable The person is more likely to be confined to a bed at this stage. It is therefore important to pay attention to pressure sores (please see chapter on pressure sores). Also, due to a slowing down of their blood circulation, their feet and legs might swell and become cold and rigid. Putting a pillow under their feet may help.

Try to arrange for some kind of assistance

In order to provide the kind of care needed by the person with dementia in the later stages of the disease, you may need to seek assistance. Providing constant attention to the person’s needs will take up a great deal of your time. Consequently, you may need help with tasks that you would normally be doing during this time (e.g. shopping, cooking, cleaning) and you might need someone to look after the person while you sleep. Clearly, you cannot do everything. Your Alzheimer’s disease organisation and your doctor may be able to put you in touch with people who can help (e.g. social workers, home helps, visiting nurses etc.)

Provide reassurance and gentle physical contact

In the last stage of the disease, there may in fact be very little that you can do except try to make the person with dementia as comfortable as possible and provide reassurance. The person may feel afraid and confused, but as their language ability is likely to be greatly affected, they may be unable to express themselves. At this stage, it is fairly common for people with dementia to repeat the same phrase or words over and over again, without understanding what they are saying or anything that other people say to them. On the other hand, some people retain their hearing right until the end. Therefore, you should be careful not to speak about them as though they were not there. Even though the person might not understand what people are saying or seem to react, they will probably be reassured by a soft and familiar voice.

Another way to let the person with dementia know that you care and that they are not alone is through touch. You could simply take hold of their hand gently without saying anything or gently put your arm around their shoulders. Take care, however, not to cause any pain due to the sensitivity of their dry skin. The physical contact might provide reassurance.


Making decisions linked to residential care

Discuss the possibility of residential care early on in the disease

It is best to consider in advance the possibility that at some stage, you may not be able to care for the person with dementia at home. It is a good idea to discuss this matter with the person at an early stage when they are better able to understand and communicate. You should also include the family in this decision, perhaps during a family meeting.

Try not to make promises you may not be able to keep

It is important never to categorically state that you will not allow the person with dementia to be taken into residential care. You might simply be unable to provide the kind of medical care and the necessary equipment or facilities required at some stage in the disease. However, it can be difficult not to make such a statement, particularly if the person asks you to promise that you will always care for them at home. Nevertheless, you should try to reassure the person that you can manage and respond to the worry being expressed without making any claims about the future. In this way, you will avoid the anguish and guilt, you might feel if the time does come when it is necessary to consider residential care.

Look into the various possibilities of residential care as soon as possible

As the decision to place the person with dementia in residential care is a difficult one to make, you may be inclined to put it off as long as possible, perhaps until it becomes unavoidable. By that time, you might not have time to look into the various possibilities and the choices available to you may be more limited. For this reason, it is best to make enquiries as soon as possible, even if you don’t think that it will ever be necessary. Your doctor and your Alzheimer’s disease organisation will be able to give you advice on the different kinds of residential care available. They will also be able to put you in touch with the necessary organisations, should you require financial assistance. It is best to visit the various homes/institutions when making a choice, in order to see how they are run, meet the staff and try to determine which place would be most suitable. If you have time spend a whole day there. It is a good idea to make a list of points to consider and questions. Take a check-list with you and make notes as you look round to make sure that you don’t overlook or forget anything important. A few points to consider might include :

Residents

  • Do patients look happy and well looked after?
  • Can they make choices about matters concerning them?
  • Are patients taken care of immediately in case of incontinence?
  • Are there patients from the same cultural background?Are their beliefs, practices and customs respected?
  • Can patients move about freely whenever they want?
  • Can patients have pets?
Staff
  • What is the ratio of staff to patients?
  • Are all care staff specifically trained?
  • Are there sufficient staff on duty at night?
  • What is the attitude of staff towards patients?
  • Do they respect the individuality and dignity of patients?
  • How do they handle difficult behaviour?
  • Do they welcome or allow help from carers?

Do staff answer questions and seem to understand the worries of carers and patients?

The building

  • Is it conveniently located for frequent visiting?
  • What is the layout of the building and how is it furnished?
  • Do rooms look sterile or personal?
  • Are there enough toilets and are they easily accessible?
  • Are there smoking and non-smoking areas?
  • Is the building adapted for physical disabilities?
  • Is there a garden or outside area?
Facilities
  • Are activities/events organised for those who can participate and if so are patients encouraged?
  • What is the quality of food?
  • Are provisions made for choice/personal taste?
  • Are there facilities for both privacy and socialising?
  • Are visiting hours sufficiently flexible?
  • Is visiting permitted at any time?
  • Are children welcome and can visitors stay overnight?

Help and prepare the person for the transition into care

There are a few things you can do to make the transition into residential care smoother. Even if you are not sure how much they understand, try to explain what is happening and involve the person in the preparations (e.g. packing clothes, deciding on pieces of furniture to take, etc.). If they have already attended a day care centre, the transition might be easier, but if not try to make sure that they visit the home in advance. It would help to visit regularly in the period following admission to help the person understand that you have not abandoned them and so that you also realise that this is not the case. Try to visit on a regular basis. Even if you feel that they no longer recognise you and you cannot communicate, your visit might still be beneficial.

Try to deal with your emotions

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.

 

 
 

Last Updated: Tuesday 11 August 2009

 

 
 

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