Being a caregiver for someone with advanced Chronic Obstructive Pulmonary Disease (COPD) is difficult, even more so when the person suffering with late stage COPD is someone you love. Being a caregiver often leaves one feeling helpless and alone as they watch their loved one suffer from the various symptoms related to this disease, often unsure of how to help them feel better.

While you may not be a medical professional, there are things that you can do to help your loved one with symptoms and with their overall quality of life. We have gathered advice from nurses and caregivers who work with advanced COPD to help you better care for your loved one.

Advice That Works for the Patient and the Caregiver

Gina Kaurich is a registered nurse and the Executive Director of Client Care Services at FirstLight HomeCare. She says, “COPD can be exhausting creating both ‘cabin fever’ and depression. Conserving one's energy and taking advantage of when feeling well to go for short trips in the car or to see family and friends will help alleviate the feelings of isolation.”  

She also suggests that patients with COPD engage in different things to keep their mind active when homebound such as puzzles, games, books. As well, Gina recommends using a computer to find online support groups and social communities those with COPD. Incidentally, this can also be great advice for the caregiver. Along with helping your loved one get their mind off of the disease and enjoy time away from home with friends when possible, the same can offer some much-needed relief for you as a caregiver. And, there are online support groups and forums dedicated to caregivers where you can get in touch with others who are facing or have faced the same challenges as you. They can be a great source of support as well as valuable information on caring for your loved one.

Advice from One Caregiver to Another

Mary E. Nelson is an 18-year hospice volunteer, wife and caregiver for Mr. Jim Nelson, a member of the COPD Foundation Educational Review Working Group (ERWG) and dedicated patient advocate representing those like themselves who are impacted by COPD.

She offers the following advice from the perspective of not only someone with extensive experience and knowledge of end-of-life care, but also as someone who is also caring for a loved one with COPD.

Helping Yourself So You Can Better Help Them

“Caregiving is a life put on hold.  By the very nature of the relationship with the patient, certain requirements must be met, sometimes on an urgent basis.  Because of the needs of the patient, the caregiver may be placed in the position of subjugating their own desires.

It is common for the caregiver to feel alone, isolated.  The pressure of providing constant care, especially in the latter stages of a chronic disease, can affect the health and well-being of the caregiver. It is vital, therefore, for the caregiver to make every effort to take care of themselves. They must find a way to relax, to de-stress, to borrow, take, demand time for themselves. In order to do this, they may have to rely on the kindness of friends or family members.  In some cases, the situation may require hired assistance, or Hospice or Palliative care.”

Improving Your Loved One’s Quality of Life

Improving your loved one’s quality of life with COPD may not always be easy, but it can be done. Mary offers the following advice to help you keep your loved one comfortable and safe with advanced COPD:

“The caregiver must monitor the condition of the patient.  In order to do this, they must be familiar with the signs and symptoms of the disease.  They must take responsibility for the medication regimen and inventory, as well as the usage and supply of supplemental oxygen. It is important to keep the patient in the best possible condition, for the benefit of all concerned.  If that involves exercise or some other sort of activity, a certain amount of urging may be necessary.  In addition, the patient must be supplied with the proper nutrition, in the proper amounts.  It is difficult for many lung disease patients to eat, to digest, and because of increases in the size of the diseased lungs, to partake of anything approaching a normal-sized meal.  For that reason, many patients will be much more comfortable with 5 or 6 small meals a day. The caregiver must also insure that the patient’s surroundings are safe.  If that involves grab bars or ramps or shower chairs, they must be supplied. Oxygen use carries its own hazards, and falls are a constant danger in the advanced patient.”

Mary’s final piece of advice is, and what she considers possibly the most important, is that “a positive attitude is absolutely essential! The attitude of the caregiver will directly affect the mood and the outlook of the patient.”