Assisted Living is a real part of everyday life for many Lyme patients. Due to the neuro-cognitive issues caused by Lyme disease, different people struggle with different disabilities and need varying degrees of support depending on the severity of the infection and what parts of the body and brain are affected. It could be as simple as needing a cane to help with walking, or it could be as extreme as complete paralysis.
Besides the physical limitations, there are also environmental challenges including sound and light sensitivity. Or someone who lives alone may need help getting to the bathroom or preparing food. Although it is impossible to pinpoint all of the possible scenarios, I wanted to try to provide some resources and ideas on how to make life a little more comfortable and manageable for those who are struggling.
The first step is acceptance. Accepting the reality of a disability can be very difficult for some, especially those who have always been very independent. The idea of having to use a cane, a walker, or a wheelchair is difficult to adopt. The idea of having in-home care, or food delivered to your home often seems like a burden and not a necessity.
However, part of successful treatment includes overall health. Physical, mental, and emotional comfort all need to be considered. This is not to be confused with giving up. One should always try to do things, but if you physically cannot do it, then it is okay to ask for and to receive help.
So where do you begin? First, you need to evaluate your situation and needs. Are there people in your own family or circle of friends that can help you? Can you gain more independence by using a device or getting outside help? Are there monetary or physical constraints to consider? If so, is there funding or help available?
Create a list of needs, along with a list of struggles. Categorize them in order of importance. Then, create a game plan to help you achieve the necessary changes. And rather than feel saddened by it, find gratitude for the opportunity to improve your quality of life and well-being. By doing so, you are increasing your chances of treatment success.
The idea is to help people improve their quality of life while fighting this disease. There are a whole lot of people out there with much more experience than me with this; any suggestions are welcomed and appreciated. If I am missing anything that you feel is important and would like to share, please contact me with more information, and I’d be happy to add it to the list.
This is a very basic list of some of the challenges Lyme patients face. For more information, please see Resources & Links to the right.
Vision
This is a common impairment for those that suffer from neurological Lyme symptoms. This can include blurred vision, floaters, or light sensitivity, among others. Reading is often affected and can be extremely difficult. There are many devices out there that will enhance text or even make it audible for the severely impaired. There are many options out there, so there is no need to suffer through this.
Alternative Input
Lyme patients often experience extreme weakness. In some cases there is partial or full paralysis. This often makes writing, typing, and using the internet difficult if not impossible. Alternative Input devices provide several options for this and open up new possibilities for working from home to help with financial strain.
These devices include touch screens, voice recognition, and Impulse EMG (Electromyography) which senses muscle contractions and transmits that information in a way to allow full control of your computer. There are some that track eye movement as well. This technology has come a really long way.
Hearing
Hearing Loss is common for Lyme patients, sadly. There are also cases of loud ringing, buzzing, or other noises that do not stop. In those cases, extreme measures are sometimes necessary. Specialists are usually required to prescribe hearing aids and devices. But, there are some in-home devices such as assistive listening devices, deaf alert systems, TDD & TTYs, vibrating alarm clocks, and specialty phones.
Mobility
Mobility can become an issue when a patient becomes too weak or the pain is too great to stand or walk. Sadly, this is common with Lyme patients. The progression usually goes as follows: cane, walker, wheelchair, 24/7 chair. It is often difficult for people to give up what they view as freedom by using something to help with mobility. So many struggle with a cane and avoid going to the walker. And the biggest jump that is avoided is getting into a chair.
I have several very dear friends who inspired me to do this page due to their mobility issues. One friend put this into a very positive perspective, pointing out that moving to a wheelchair is what provided more freedom for her due to the ease of mobility. What would normally take hours to do, she could now do in minutes. Another dear friend is in a chair 24/7-365 and he has the best attitude and sense of peace despite his condition, pain, and abandonment. He is an amazing inspiration. So, perhaps acceptance of physical limitations can lead to more freedom and a better quality of life.
Transportation
Especially for those who live alone and have no help, getting to doctor appointments, grocery shopping, and other activities that require travel can be challenging when physically impaired. Depending on where you live, there are several agencies in place that will provide transportation. Look for different options available in your area as it varies from place to place.
Food
For those who are severely impaired and live alone, something as simple as eating can be difficult to achieve. Unless you have in-home care (see below), it can be impossible to prepare a meal and a challenge just to eat it. There are meal delivery agencies, such as Meals on Wheels, available in most places that will deliver a fresh hot meal to your door. In the case of full paralysis, in-home care is usually the only option.
Prescriptions
IV therapy
IV therapy is common during Lyme treatment, especially for those who require long-term and aggressive antibiotic therapy. This often requires a nurse to come to your home to clean and check the area and equipment. Make sure you feel comfortable with the person that does this, because it will often be a long-term relationship.
The different types of Intravenous therapy include hypodermic needle, peripheral IV line (PVC or PIV), Central IV lines, peripherally inserted central catheter (PICC) line, Central venous line, Tunneled line, and implantable ports. The most common that are used for IV antibiotics are the PICC line and the Port.
There is risk of infection and complications with any semi-permanently placed IV line. It is important to determine with your doctor if it is necessary. This is usually reserved for those who have not responded to oral antibiotics or require specific types of supplementation.
In-home care
As much as no one wants to depend on a stranger to come into their home and help feed them, bathe them, or even change their adult diaper or replace a catheter; this is a reality for some Lyme patients. It is much more important to have human contact and care, whether it is a nurse or a friend, than to live in filth or suffering. The quality of life and care of a patient is crucial to mental health and overall well-being. Do not be ashamed to ask for and receive help. Instead, be grateful.
In case of Emergency
When living alone with the possibility of paralysis, falls, seizures, or other dangerous possibilities, it is important to have an emergency plan in place. This could be as simple as always keeping a cell phone attached to your person or a life alert system that calls 911 for you. Make sure you consider all possibilities and have a plan of action in place. Notify those on your emergency list that you are depending on them for help in the case of an emergency. Make sure that your emergency contact has an updated list of other people and phone numbers to contact in the event of an emergency.
Special thanks to Mitchell and Ginger for your courage, inspiration, and unending love, support, and perspective providing hope for others.
I admire and love you both.
Quality of life is essential for healing…