Chris Tope
I'm Chris Tope. I am Debbie's caregiver and husband. Debbie asked me to write about being a caregiver. I in no way consider myself an expert however I am well experienced caring for an ALS patient. I have read numerous articles on being a caregiver and have come to the conclusion that since every disease, patient, and caregiver are so different that you cannot rely on the vague generalizations that most of these articles offer you. For that reason, I will just share some thoughts and experiences on being Debbie's caregiver and not pretend that I know the best way to be a caregiver for every patient or for every disease or situation. I have a very good patient to be a caregiver for. Debbie has a very good attitude about life and the eventual result of this disease. Debbie rarely complains and usually wears her beautiful smile. Anyone who has read anything from her website can tell from her writing that she is a beautiful and talented person.
We have a very good situation in that, thanks to our family, I was able to leave my job to care for Debbie full time. This situation is such an advantage because we have developed a routine for doing everything in our daily lives. This stability eliminates the stress of continually training new caregivers. Stress, like it is for most ailments, is very detrimental to patients with ALS. I know that Debbie thinks that I follow our routine to a fault because I don't like to deviate from our comfortable routine. I just believe that stability is important with a disease that makes life so unstable. I feel very fortunate that the ALS is progressing so slowly with Debbie. It is so hard on her physically and emotionally to lose yet another ability and with this diseases' slow progression it gives us more time to be able to adjust to the changes we have to make in our routine.
I want to talk about some of the issues that concern or "haunt" me as a caregiver. I am always concerned whether I am doing everything in my power to combat this disease. Is Debbie getting the latest treatments for the disease? Is there a cure for ALS that we are missing? I am fairly sure that the answer to both questions is no but the doubt bothers me. Is Debbie comfortable? Is there anything I can do to make her life easier? I don't think so since she doesn't complain. If Debbie should succumb to this disease and I found out that I missed an obvious treatment, it would surely haunt me. I am slowly learning to accept that if I listen to Debbie's requests, listen to her health professionals advice, and read all I possibly can then I am doing everything I can and should. We have read of supposed cures for ALS by supposed reputable doctors. We have read about virus claims that can be treated with existing drugs. As time passes though, the claims disappear and we are just left with more disappointment and doubt. I have to continually remind myself that there has never been any proof of anyone being cured of ALS. So my efforts need to be focused on Debbie's care, address the concerns that I am able to, and try to keep the other concerns at bay.
Caregiver burnout is an issue I read a lot about and should be addressed. I have been a full-time caregiver for 5 years now and have yet to feel burned out. I believe that depression and stressed patient-caregiver relationships are strong contributors to caregiver burnout. Debbie and I usually keep things light as laughter fills much of our day. We have a very strong and close relationship but when we do have disagreements, we work through them quickly. We communicate, resolve our differences, and usually decide that we are more angry with the disease or the results of the disease than we are with each other. We accomplish so much more when we fight ALS and not each other. Depression I believe is caused when everything looks bleak and hopeless. ALS with its certain future is likely to cause some depression in both patient and caregiver. Debbie knows that I do not like talking about death. I somehow think that talking about it is her giving in to this disease. I guess that this is my coping mechanism. If I take my mind off of it and get back to the task at hand, then the depression subsides. I am not claiming that this is the correct method of dealing with it but it has worked for 7 years. Over those 7 years, I have mourned Debbie's eventual death and thanked God that He has not taken her yet in the same thought.
I know that I did not cover how to be a caregiver. I just shared some thoughts that are involved with my experiences so far in caring for Debbie. I do believe that if a person cares about the patient and wants to give good care to that patient then they are well on there way to being a good caregiver. ALS is a rough disease. Debbie, you make care giving easier.