The staggering burden of caring for the bed-bound

Rising costs: A stroke patient receiving electrical stimulation to his muscles, supervised by a physiotherapist. Healthcare does not come cheap and the cost is expected to rise in the near future. — Filepic

A medical professional examines what it takes to care for a bed-bound person.

IT IS often a big source of stress when a loved one is left with a permanent disability which renders them unable to perform daily activities independently. Causes of disabilities may include stroke, an accident which results in injury to the brain or spine, genetic diseases, and advanced cancer.

While healthcare providers do their part by breaking the news and discussing treatment options, the greatest burden falls on the patient or caregiver.

Upon discharge from the hospital, there are many issues to be ironed out. These include nutrition, urinary and bowel incontinence, skin health and bedsore prevention, rehabilitation, nursing care and emotional support. Not many are aware of the amount of effort it takes to provide good nursing care for a patient with a disability.

Certain patients may require feeding through a tube. The feeds prescribed are often high-calorie special formulae which can be quite costly. Patients may require feeding seven times a day, and one tin of formula feed can be consumed within a week.

The tube – depending on the type – may need to be changed every fortnight; others may last up to three months. There are also costs involved in getting a healthcare professional to change the tubes regularly. Patients with urinary or bowel incontinence would require urine tubes or diapers to keep them clean and comfortable. A packet of 12 adult diapers may last just three to four days.

The caregiver has to learn the correct technique of changing diapers to avoid muscle strain on himself. Urine tubes or Foley catheters also require changing regularly. Urinary tract infections are a known hazard when patients are on the urinary catheter long term. Although some caregivers may prefer urinary catheter since it is less messy to handle, it may not be the best option for the patient.

Lying down on a bed 24 hours a day leads to increased pressure on the skin. This affects blood circulation to the skin. Over a prolonged period, this can lead to development of ulcers on the skin known as bedsores or pressure sores. If the bedding is wet or soiled by urine or faeces, this increases the risk of skin breakdown and infections. Bedsores require regular dressing to prevent further skin breakdown.

Ripple mattress

Caregivers are encouraged to turn the patient every two hours and use a special mattress called a ripple mattress. This mattress has alternating cells of air which inflate and deflate cyclically to reduce prolonged exposure to high pressure.

The ripple mattress reduces the risk of bedsores but does not eliminate it entirely. Turning the patient every two hours is still the best way to avert bedsores. Again, caregivers need to be taught how to do it to ensure regularity and prevent muscle strain to themselves.

For patients who still have strength in their arms, a bed with side rails is helpful for the patient to pull themselves to different positions and lighten the load of the caregiver.

Rehabilitation includes services such as physiotherapy, occupational therapy, swallowing management and speech therapy, and various assistive devices.

Physiotherapy is essential because contractures or hardening of the joints may occur if the patient does not move it for a long time. Occupational therapy may help to assess the home environment and suggest modifications to facilitate patient care.

Swallowing management is essential for patients who require a feeding tube. A trained speech language pathologist will assess whether it is safe for the patient to swallow food. This is because injury to the brain may lead to failure of the protective mechanisms of the throat during swallowing.

Without a tube, the food may end up in the airways instead of going into the stomach. This would lead to aspiration pneumonia or lung infection. The speech language pathologist can teach exercises to the patient to retrain him to swallow. If there is improvement, the patient may not require the feeding tube anymore.

In some cases, the feeding tube cannot be removed as there is no recovery of the swallowing function. For long-term feeding, a feeding tube can be inserted straight from the skin into the stomach.

This is preferable to inserting the feeding tube via the nose because it is easier to care for, can be concealed under clothing, and requires less frequent changing. It can be easily inserted by a trained gastroenterologist or surgeon. The larger size of the tube may accommodate finely blended food besides the usual commercially prepared formulae.

For rehabilitation to be effective, multiple sessions are needed. The caregivers would need to arrange for transport to the rehabilitation centre. Exercises recommended by the physiotherapist should also be done regularly at home to prevent contractures. The physiotherapist can help the patient to regain muscle strength and teach caregivers to transfer the patient properly into a wheelchair.

Often patients with disabilities may require follow-up appointments at various specialist clinics. For example, a stroke patient with diabetes and gastric problems may need to visit the neurology clinic, endocrine (diabetes) clinic and gastroenterologist.

With all the various rehabilitation sessions, caregivers often find it challenging to take patients for their appointments, especially if the patient is unable to even sit up. Such patients may require the services of a private ambulance which is rather costly.

Bear in mind that public ambulances do not provide such services to the public, as they have to be on standby for emergency calls. For patients who are wheelchair users, arrangements need to be made for suitable transportation.

Nursing care

The burden of caregiving can be overwhelming. Some families cope by taking shifts to care for the patient. Others hire part-time nurses or a live-in maid. Even then, caregivers are not really relieved of their responsibilities.

Old folks home which are staffed by untrained helpers are not suitable for such patients. Families which need nursing care for their loved ones should seek nursing homes with in-house nurses who can handle tasks like dressing, supervise medications correctly, and ensure bedsore prevention.

Even so, the amount of stress and commitment required to care for a person who is unable to care for himself, can be overwhelming. The impact of a debilitating condition can lead to depression for the patient, and stress and anxiety for the caregiver. Caregivers often require time for respite.

Unfortunately, there are not many centres in the community which can provide respite care, and many families do not have the financial means to pay for such services.

The costs of medical care, transportation, and hospital services are not cheap. In fact, it is expected to rise in the near future. Despite having an OKU card, these patients are only eligible for RM150-300 per month from the welfare department. This sum is definitely not enough to sustain the cost of healthcare.

What are the lessons to be learnt from all this? Firstly, preventive care needs to be a priority for all of us to prevent serious chronic diseases. Once the chronic disease results in complications, it will adversely affect us and our loved ones.

Secondly, there is a need to coordinate and consolidate services in the hospital to reduce the number of visits. Creating a one-stop service can be a big relief for caregivers. It will also reduce the number of patients who fall through the cracks in healthcare services, though they are the ones who need medical care the most.

Thirdly, efforts are needed to find a way to finance healthcare because it is a big burden for caregivers and patients. Subsidies and aid from government and welfare bodies are like a drop in the ocean. Is there anything more the public can do to help assuage the financial burden of care?

Lastly, there is a great need for domiciliary care services, whereby healthcare services are brought to the patients’ homes. The Health Ministry has rolled out such a service which supports transitioning for patients for up to three months following discharge. This service is provided free via local government health clinics. This is a great start for patients and their caregivers.

However, there is more to be done as the disabilities are long term. It is hoped that such services will help to reduce problems such as infections and bedsores, and lighten the psychological burden of patients and caregivers.


Beyond Barriers

Beyond Barriers is a platform for sharing and raising awareness on disability issues and any chronic medical condition. We welcome contributions from readers who have a disability or any special needs, caregivers, advocates of disability groups, or anyone living with any chronic medical condition. E-mail your stories to Contributions which are published will be paid, so please include your full name, IC number, address and contact number.

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