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Empowering People Living With Multiple Sclerosis: The Vital Role of Home Carers and at Home Respite

Caring for a loved one with a chronic illness like Multiple Sclerosis (MS) can be a challenging and emotionally taxing experience. Multiple Sclerosis is a neurological condition that affects the central nervous system, causing a wide range of symptoms and disabilities. In such cases, home care services, including ‘hourly domiciliary care’ and ‘Live-in private carers’, play a crucial role in sustaining the quality of life for both patients and their caregivers as best they can and for as long as they can. This blog explores the intricacies of Multiple Sclerosis, the various aspects and benefits of home care, and respite at home.


Home carer with multiple sclerosis client at home smiling and reading

Understanding Multiple Sclerosis

Multiple Sclerosis is a chronic autoimmune disease that affects the central nervous system (CNS). The CNS comprises the brain and spinal cord, and it controls most of the body's functions. When MS is present, the immune system mistakenly attacks the protective covering of nerve fibres called myelin. This attack disrupts the normal flow of electrical impulses along the nerves, leading to a wide range of symptoms, the combination of which is often unique to each individual living with the disease.


Symptoms of Multiple Sclerosis

The symptoms of MS can vary widely from person to person and depend on the location and severity of nerve damage. Some common symptoms include:


1. Fatigue: Debilitating fatigue is one of the most common and challenging symptoms for individuals with MS. A feeling of constant exhaustion, burnout, and, or lack of energy. It can be physical, mental or a combination of both.


2. Muscle Weakness: Weakness or stiffness in muscles can affect mobility and coordination. Symptoms of muscle weakness may result in difficulty rising from a chair, brushing your hair, lifting an object off a high shelf, or dropping things. It might cause drooping of an eyelid or difficulty smiling, depending on which of the body’s muscles are weak.


3. Numbness or Tingling: Many people with MS experience numbness, tingling, or a pins-and-needles sensation. This can often be one of the first-felt symptoms of MS and one of the most common with feels as if the part of your body is ‘asleep’ – numb.


4. Balance and Coordination Problems: Difficulty with balance and coordination can lead to falls and injuries. Interestingly this is currently not widely documented, however many GPs report their patients living with MS have mentioned a decline in their ability to balance.


5. Vision Problems: MS can cause blurred vision, double vision, or even complete vision loss. Termed as optic neuritis, this is often one of the earlier noticed symptoms of MS.


6. Cognitive Changes: The cognitive impairment caused by MS often manifests as episodic memory problems, difficulty concentrating, a reduction in processing speed.


7. Continence Management: MS may episodically affect a person’s bladder and bowel control as the muscles are affected.


8. Pain: As MS can damage the nerves that affect muscles, chronic pain, such as neuropathic pain, is a common symptom. Cramping, a pulling sensation and spasms all reported as symptoms.


9. Speech Problems: Some individuals may experience speech difficulties. According to the National Multiple Sclerosis Society “Speech problems, including slurring (dysarthria) and loss of volume (dysphonia) occur in approximately 25-40% of people with MS.”


10. Mobility Issues: As MS progresses, mobility can become severely impaired, leading to the need for assistive devices or wheelchairs.


Domiciliary Care and Private Carers

When a loved one is diagnosed with MS, it often falls upon family members or friends to provide care and support in the first instance. However, the demands of caregiving can be overwhelming, and this is where domiciliary care and live-in private carers can make a significant difference for respite at home on a short or long term basis.


Domiciliary care, involves professional home carers coming to the patient's home to provide assistance with daily activities for multiples of minutes ranging from 30 minutes to a few hours. These caregivers are expertly trained to offer a range of services tailored to the individual's needs. For someone with MS, this could include help with mobility, personal hygiene, continence management meal preparation, medication management, companionship and emotional support.


Live-in Care private carers are individuals engaged by the person living with Multiple Sclerosis or their family to provide professional and personalised Live-in Care in the home which ensures round-the-clock care is available as and when needed and indeed wanted, throughout the day or night. This ‘model of care’ enables a Carer to offer one-on-one attention and establish a deep bond with the person they care for. Private carers can be especially beneficial for those who prefer a more personal and dedicated approach to caregiving or who require 24/7 support in the comfort of their own home.


The Benefits of Live-in Care Services


1. Comfort and Familiarity: Live-in Care allows individuals with MS to remain in the comfort and familiarity of their own homes, which can have a positive impact on their emotional well-being.


2. Personalised Care: A Live In Carer will tailor their service to the specific needs of the person living with MS, ensuring they receive the assistance and support required for their unique situation.


3. Independence: Live-in Care promotes independence to the extent possible, enabling a level of control over daily routines and decisions.


4. Safety and Accessibility: Private carers can assess the home environment and make necessary modifications to ensure safety and accessibility for individuals with mobility challenges.


In Home Respite: A Lifeline for Caregivers

Reduced Stress: Family caregivers often experience high levels of stress and burnout. Caring for a loved one with MS can be physically and emotionally exhausting. Live-in care can alleviate this burden, providing support and respite at home for family members. A ‘Live-in Carer’ can be engaged for just a week at a time if required and families often engage them on a rotation E.g., one week in 4/6/8 to give family caregivers much needed rest and relaxation so they can give their very best at all times.


Benefits of In Home Respite Care

  • Continuity of care: The person with MS remains in a familiar environment, minimising disruption to their routine.

  • Personalised care: Respite private carers are trained to meet the specific needs of the individual.

  • Peace of mind: Family caregivers can relax knowing their loved one is in capable and qualified hands.

  • Reduced stress: A break from caregiving responsibilities can help prevent burnout and improve the quality of care provided.

  • Complete break: Caregivers can have a more extended period of respite without any caregiving responsibilities.

  • Social interaction: Individuals with MS can engage with others in a supportive and social environment.


Finding the Perfect Private Carer for someone with Multiple Sclerosis

At Access Care we pride ourselves on being a Live-in Care agency who really care. We know how much our Live-in Care private Carers support and enhance the quality of life of our clients and their family. Furthermore, it’s a pleasure to help make that happen.

We have been introducing professionally trained Live-in Carers to care for people with Multiple Sclerosis at home since 1994. Many of our private carers have a wealth of experience and have attended specialist MS care training.

We will listen to your wishes and needs. We will talk to you to get to know you so we can try to find you a Live-in Carer with common interests and beliefs. This is in addition to the necessary care qualifications, skills, and experience.


For free advice and information please call our friendly team on 01264 319 399 or click here.


For our Clients with Multiple Sclerosis, we look for Live-in Carers who ideally have advanced experience of caring for clients with MS. They will have the necessary understanding and insight into the condition as well as the practical skills to support you. Our job is to present you with possible Live-in Carers to choose from. Your job is to choose one!


Conclusion

Multiple Sclerosis is a complex and unpredictable disease that can significantly impact the lives of those affected and their caregivers. Home care services, such as domiciliary care and Live In Carers, provide crucial support and assistance to individuals living with MS. Respite care at home, offers a lifeline to family caregivers, allowing them to take breaks and recharge.


In the journey of caring for someone with MS, it's essential to remember that you don't have to do it alone. Seeking professional home care services and utilising respite care can enhance the quality of life for both the person with MS and their dedicated caregivers. The key is to find the right balance between caregiving and self-care, ensuring the well-being of all involved.

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