Caring for someone with Amyotrophic Lateral Sclerosis (ALS) can be a challenging experience for even the most concerned and diligent of caregivers. This can be even more difficult not knowing how the disease may be affecting your loved one or how you can help. Thus, having some basic knowledge of what ALS is, and how it works, can help you anticipate how you and your loved one can cope with the disease in the future.
Being cognizant of possible ALS symptoms in advance can help you know what to expect, and prepare for the inevitable transitions of the disease. In this article, we review how ALS works, common ALS symptoms, and how you can better care and prepare for your loved one by seeking the help of hospice care services.
What is ALS?
ALS, sometimes called Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord that control voluntary muscles. This causes weakness and the inevitable deterioration of muscles both in their size and their ability to function. As a result, many people with ALS gradually lose their ability to walk, use their hands, speak and swallow. In as many as 95% of the cases, the cause is unknown, however it is believed to be the result of a genetic abnormality.
ALS is usually characterized by pain, muscle twitching or spasms, stiff muscles, or excessive drooling (caused by weak chin muscles), and later difficulty talking, swallowing, and breathing. Eventually, all the muscles that a person can control (voluntary muscles) are affected, forcing the person to use a ventilator and/or feeding tube. ALS can also impair the ability to think and cause significant changes to a person’s memory or their decision-making.
About ALS-Induced Depression
An ALS diagnosis can also trigger feelings of lethargy, intense sadness, fear or hopelessness for those afflicted, as well as their caregivers. While these feelings are completely normal, for some ALS patients and their loved ones these feeling can persist and become an ongoing problem that can often be just as severe as the physical symptoms of ALS. If not treated, prolonged feelings of sadness and anxiety can lead to depression, a mental disorder that can cause noticeable changes in one’s relationships with others, as well as in their day-to-day well-being.
Depression is characterized by persistent feelings of sadness and loss of interest, and affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You or your loved one may have trouble doing normal day-to-day activities, and sometimes feel as if life isn’t worth living. Common symptoms of depression include:
- Feeling sad or down
- Experiencing a loss of interest in activities you once enjoyed
- Having sleeping difficulties (for example, sleeping too much or having trouble falling asleep)
- Having a change in appetite
- Feeling guilty or hopeless
Should you or your loved one feel any of the above symptoms for two weeks or longer, make an appointment to see a doctor or mental health professional as soon as you can. If you’re reluctant to seek treatment, talk to a friend or loved one, any health care professional, a faith leader, or someone else you trust. Moreover, if it’s your loved one who is experiencing depression as a result of their ALS diagnosis, know that hospice care can provide the support, care and therapy they may made need to overcome ALS-triggered despondency.
When to Seek Help
Caring for someone with ALS requires many demands on the patient’s primary caregiver. From daily living activities such as shopping, cooking and cleaning, to more demanding activities such as bathing or feeding, caring for a ALS patient can take a toll. As the afflicted person’s muscles decline, it can become increasingly difficult for primary caregivers to assume all of their responsibilities alone.
Over time, as the disease progresses and your responsibilities as a caregiver increase, it’s common to experience complex emotions such as worry, fear, guilt, frustration and even anger. Sometimes this can affect the caregivers quality of life and lead to depression. As a result, the caregiver may be unable to sufficiently care for themselves, let alone their loved ones. If you find yourself in a similar situation, it may be time to seek help from a hospice care provider.
Hospice Care services can provide pain relief and emotional support for your ALS diagnosed loved one, while providing respite care for their primary caregivers. By offering caregivers help with everyday tasks, giving them room (and time) to breath, caregivers can rest and recharge while getting the psychological support they deserve.
The Benefits of ALS Hospice Care
Hospice care is a great option for caregivers and the ALS diagnosed loved one in need of an additional layer of support both in the home or in a long-term-care facility. Hospice care can assist you in every step of the caregiving process while also easing the symptoms of your loved one’s ALS. Moreover, hospice care services provide comprehensive access to a team of healthcare professionals who can attend to the needs of your loved one where and when they need support.
ALS-specific hospice care teams are professionals who can attend to your loved ones needs, be they emotional or physical. This can help stave off many of the negative emotion experiences that can lead to depression. In addition, hospice care also employs social workers and volunteers who can assist you in in daily activities, finding information regarding local support groups, contacting palliative care services, or providing a hospice referral in the terminal phase of ALS.
Moreover, having access to hospice care if and when you need it can also allow you to have a much need break from all of the demands of being a primary caregiver of a loved one with ALS. This can give you ample time to do other necessary household tasks such as cleaning, doing laundry, paying bills or contacting family members. You could also use this as an opportunity to get some rest or do something special for yourself. These moments can clear your head and make the experience overall much less stressful, significantly reducing your chances of developing depression.
Contact Harbor Light Hospice for More Information
We hope this article has helped you better understand the role hospice care can have in caring for someone with ALS. Whether for offering relief from distress or pain, minimizing stress or anxiety or facilitating a better sense of wellbeing, hospice care is a reliable form of care for ALS patients and their caregivers. Contact Harbor Light Hospice today to learn more about our hospice care services.