The diagnosis of Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease can be just as devastating for the family of the person who has been diagnosed as it is for the person who has received the diagnosis.

If you have a loved one who has recently been diagnosed with ALS, their care may be in your hands. Though the beginning stages of ALS will not be as difficult to handle, this is a degenerative neurological disorder that as it progresses will cause your loved one to have more difficulty moving around and performing their various daily tasks.

At some point they will be unable to move at all as the disease takes a toll on the muscles in the body.

Planning for the Future

Initially at diagnosis, your loved one will usually be able to discuss the type of care they want to receive. Some people will want every type of medical treatment available in order to prolong their lives. Others will prefer that they are kept comfortable but do not want any type of excessive medical efforts in order to extend the time they have.

As the caregiver of a loved one with ALS, it is extremely important for you to consider their wishes as you look towards the future, even if those wishes are not the same as your own.

ALS is a progressive disease which means though your loved one may be coping and living fine on their own with just a bit of twitching or weakness at the beginning.

As time passes, ALS will paralyze the muscles in the body. Keeping your loved one moving, even by manipulating the limbs yourself, can make a positive difference in their mental state and may even delay paralysis.

Your loved one will lose control of their motor skills which will include walking, moving their arms and hands, speaking and eventually the ability to eat and to breathe on their own. Remaining as positive as possible as you can with your loved one will certainly have an effect on the quality of their lives. Using things like fresh flowers in their room or playing their favorite music will always make things easier.

As time goes on after an ALS diagnosis, there will be specific considerations for a caregiver to keep in mind. Eventually your loved one will be unable to breathe on their own and should they choose, there are things that can be done, such as a tracheotomy, which you will need to care for. Previous to this, a machine like a CPAP breathing machine, similar to those used for those with sleep apnea can be used for breathing assistance.

Feeding will also come into play and at some point, a feeding tube will likely need to be inserted that you, as the caregiver, will need to control. Though you will be able to feed your loved one, in most cases, up to a point, eventually they will not be able to chew or swallow their food. People with ALS also have an increased risk of aspirating food which can cause pneumonia.

Staying Positive as You Set Up Home Care

As you work with your loved one who has been diagnosed with ALS it is important to remain positive and hopeful. Though it is healthy and even recommended that you allow your loved one to grieve after getting this diagnosis, showing hope to them will likely make it easier for both of your to cope.

Many people live much longer than the average life expectancy and that is the thought you should keep in your mind. Remaining hopeful can have a noticeable positive effect on your loved one and their quality of life. Things you can do to keep both you and your loved ones happier during this time include:

Reading to your loved one.

Speaking to your loved one. Make sure you tell them stories of good memories you have and how much those memories meant to you. Sing to them and play their favorite music and television shows. Keep them updated on family news and events.

You may personally want to join a support group in your community and for a time, your loved one may want to attend with you. It can be very beneficial for both of you to attend these meetings together and to be among those who are experiencing similar challenges in their lives.

Not only can they support you mentally, they will have access to resources that you may not know exist that can be helpful, such as recommendations for a home health care nurse, which you will likely want for your loved one as eventually professional medical care will be needed.