Dementia is a sad reality for many people. It is one of the largest health challenges around the world.
It takes a lot of resilience and strength to take care of a loved one who has Alzheimer’s or dementia. Resilient family carers are less likely to admit their elderly relative into a care facility preferring for them to remain in the familiar surroundings of their home.
Research has been done to show that resilience grows as carers continue to look after the person with dementia. However, there are family carers who feel less able and the possibility of suffering from depression caused by the stress of caring for someone they love who is slipping away before their eyes is very real. For these folks, it is better for all involved to allow a care facility to look after the afflicted relative.
Think happy thoughts
Research has also shown that a positive attitude, laughing, and singing are important in the development of resilience. Support groups and sharing experiences with other carers help grow strength as well.
The caring journey
The journey of caring for someone with Alzheimer’s or dementia can be very long and emotional. There are no cures for these diseases currently, so it is the care and support of loved ones that make the greatest difference to the quality of life of the patient.
Do not be afraid to seek help. Caring duties can be all-consuming, and it is easy to be overwhelmed. Many dementia carers experience loneliness and anxiety. Support and encouragement are vital to the carer’s own health and well-being.
Challenges and rewards
As the patients’ memories and skills slowly disappear over time, the carer can feel grief at each new loss. The patient’s needs also increase with each loss and this can contribute to the growing responsibilities of the carer – financially, physically and emotionally. It can seem a thankless task at times. However, the rewards are great. There is no greater expression of love than the selfless care given by the carer. Being the carer of a person with dementia connects you on a very deep level. The closeness of the bond between patient and carer is made even stronger. Many people report healing of emotional wounds and forgiveness for past wrongs that have taken place at these times.
Many carers find they are able to appreciate their own lives more. Priorities change and those small day-to-day worries don’t seem as important anymore.
Being a carer gives a sense of purpose and value. It can add structure and give meaning to the carer’s life as well as add a sense of accomplishment as they learn new skills and form new relationships.
Young members of the family can learn compassion, empathy and acceptance as they see caregiving in the home.
During the early stages of dementia, the patient will probably not need too much care. At this stage, the main role of family and carers is to help them come to grips with the diagnosis and plan for the future.
Accepting a diagnosis of dementia is hard on the patient but also on their family members. It takes time to process everything that comes with that diagnosis. Give yourself time to grieve.
Seek early intervention which might include changes in exercise, diet, supplements, and therapies.
There are many organizations that can offer support and advice when dealing with an Alzheimer’s diagnosis. A lot of information is available online. You will also be able to find support groups to assist you.
Anger, frustration, fear and even disbelief can all assail us when a diagnosis of dementia is given. Let these emotions be expressed and encourage the patient to continue with their lives in a normal way as far as possible. Encourage pursuits and activities that will add meaning to their lives. If the emotions become overwhelming, seek a counsellor to help them deal with the new reality of the life they are facing.
Preparing for the future
Take time to learn about dementia and what you can expect in terms of the progression of the disease and the growing needs of the patient. The more you know, the more prepared you will be to deal with the challenges that dementia will pose.
Ultimately, the patient will need 24-hour care and supervision. Put plans in place that will allow for this care, either in their own home or in a care facility. This will reduce stress later on and allow the patient to be able to make their own decision about their care while they are still able to be involved in the decision-making process.
Slowing the progress of the disease
There are a few things that you can do to slow the progression of dementia. There are treatments for some of the symptoms, but lifestyle changes are also effective in helping slow the progress of the disease.
Some of the things to look at are:
Changes in these areas not only help the patient but, if taken on by the carer, can have very positive benefits for both.
Short-term memory loss
Prompts and reminders might be needed to help the patient remember things like appointments or to recall certain words, manage finances and keep track of medication. Help your loved one by assisting them while still allowing them their independence. Work together with them, don’t take over completely until absolutely necessary. Give them tools to assist them with remembering – a notebook, for example, to create reminders that they can keep close at hand.
As the disease progresses, more care will need to be given to your loved one. Memory loss will become more extensive. They will no longer be able to drive. They may not recognize family and friends. Their speech might be affected which will make communication more challenging. Behaviour might change and the patient might experience difficulties sleeping. You will need to give more assistance with day-to-day activities. Balancing this with your other duties can prove quite challenging – you will need to plan your time and activities very well. Make sure that you have a support structure that will be able to help deal with your new duties.
Never be afraid to ask for help. This is not something you can do alone. Friends, family, and support groups, are all there to assist you.
Make sure that you take breaks away from caring for the patient. This is not being disloyal or uncaring. You need to take care of yourself and your own health in order to be able to provide care for others.
The last stage of dementia can last anywhere from several weeks to a few years. During the last stages round the clock care will be needed. In the last stages, you will find that your loved one has difficulty eating, will need assistance when walking, will need full-time help with personal care and will be vulnerable to infections.
At this stage, the carer needs to maintain the quality and dignity of the patient’s life. It might seem that a person with dementia becomes totally lost, but some research suggests that the core of the person’s self remains. This means that you need to continue to connect with your loved one – talk to them, read to them, hug them, and hold their hand.
Care is expressed best through the senses at this stage. For example, play them music, read books to them, look at family photos, make them their favourite meal or snack, brush their hair, and sit out in the sun together.
It is essential that the patient stays well nourished. There are a few things that can help you with the often challenging task of feeding a late-stage Alzheimer’s sufferer.
Keep the person sitting comfortably upright in order to aid digestion. Keep them in this position for at least half an hour after eating.
Choose foods that are easy to chew and swallow. Thicken beverages and soups with cornstarch or gelatin. You can also substitute milk by using plain yoghurt.
Encourage the person to feed themselves. They might need your assistance and reminders to chew and swallow. Place food onto a spoon and then gently put the patient’s hands around the spoon and assist in guiding it to their mouth. Finger foods are also a good idea for self-feeding.
Alzheimer’s sufferers often forget to drink – make sure that the person is drinking enough fluids. Jelly and sorbets are helpful ways to get fluids into a patient.
Bladder and Bowel
Difficulty using the toilet is common in the later stages of this disease. Incontinence can become a problem as well as mobility to the bathroom.
To help manage this set up a toilet schedule and record when the person goes to the loo and how much they eat and drink. This will help you establish a routine and then you can plan this part of their life better. If mobility is a problem you will need to assist the patient to and from the bathroom. Another option is to get a bedside commode.
Don’t eliminate liquids in the evening altogether but limit intake to a few hours before bed.
It is a good idea to use bed pads, disposable undies, or adult nappies to avoid accidents and discomfort at night.
While it is not strictly necessary to have a bowel movement each day, monitor bowel activity and if there is no movement for three days, add a natural laxative to the patient’s diet. If the condition continues, contact a doctor for assistance.
A bedridden person is prone to skin and joint problems. The skin breaks down, pressure sores develop and the joints “freeze”.
To relieve body pressure change the patient’s position every two hours. This improves circulation. To assist with comfort and support, use pillows under the arms and legs.
Be careful how you lift the patient. A nurse can show you how to safely lift and turn a person. Never lift a person using their arms or shoulders.
Wash the skin with gentle cleansers and keep it dry and moisturized.
To assist with joint health, do range-of-motion exercises twice or three times a day. It’s best to do these after bathing while the muscles are warm.
Prevent infections and illnesses by keeping up basic hygiene such as teeth cleaning, treating minor cuts and scrapes (if the cut is deep, get the assistance of a doctor), and having flu vaccinations.
It is difficult during the later stages of Alzheimer’s for the patient to communicate if they are in pain. To determine if the patient is in pain look for the following:
Physical signs – flushed skin, pale gums, mouth ulcers, vomiting or swelling
Non-verbal signs – gestures, sounds, expressions
Changes in behaviour – anxiety, fidgeting, shaking, shouting or sleep problems
Home care might become too difficult to maintain. There are many care facilities that will be able to provide 24-hour care for your loved one. It is a hard decision to make but remember, you cannot take care of someone if you are struggling yourself. Research various options and get other people’s recommendations before you make a decision. Care facilities or a hospice will also provide support for you and your family as well as care for the patient during their last days.
Cape Care provides a friendly and personal care service that enables the frail, elderly or disabled client to continue to live independently in his/her own home. Depending on the individual needs and health needs of the client, care may be provided on a full or part time basis ie. from 3 hours to 24 hours per day. The choice of whether to remain at home or not is every person’s right.