…and so it is. Another clinic. I just re-read my first two blogs on clinic and didn’t recognize myself. Clinic is still the same, we are still always looking for the positive and approaching life with a sense of humor; I think I may just not be quite as perky about ALS as I was back then. Geez, sorry if I offended anyone with my naivety of what this disease can really dish out. I guess it’s easier to stay chipper when the breathing scores are 100% and one is still able to walk into the clinic appointment. The day has come that the breathing score is no longer 100%, Bert was lucky to hit 30% and we are no longer walking into clinic. We are no longer hitting the cafeteria on the way out for soup either…that tradition was retired a few clinic appointments ago. Rather today we had the discussion of Hospice Care. It’s been three years since the last time I blogged on the topic of clinic…guess it just became routine and there was nothing more than a small update or two to report. Today I am writing about it again because we are entering another stage of our journey with ALS. One that I may not have been able to image three years ago. We were filled with hope as we were in the middle of a drug trial and Bert of course was going to be that guy who beat this disease!
Yesterday we were still full of hope, just a different kind. We were looking for comfort, for guidance, for support in navigating the next step in our journey. Bert’s ALS progression is such that it is time to take steps to ensure the very best comfort and support. Hospice is the option we have chosen. John’s Hopkins ALS clinic is helping to guide us as they always have with this next chapter.
There are many myths about Hospice. The first big one being the person receiving hospice care has given up hope and will die soon. Neither are true. Hospice does not mean we have given up hope or that death is imminent. Hospice will give Bert the opportunity to continue receiving care that will help keep him comfortable and stable while addressing his medical needs at home.
Another myth is that hospice is a place. In some instances, it may be an inpatient facility but much of the time it takes place in the comfort of one’s own home which is the case for us. Some other misconceptions about hospice are that it can only be received for a limited amount of time. The reality is if a person continues to meet the criteria necessary they can receive hospice care. A person can also come on and off hospice care as needed. Hospice’s are not all the same. All include nurses, social workers, aides, volunteers and chaplains but the range of support may vary. Many people think that because someone is on hospice there is someone in the home 24/7. This is not the case, visits are usually intermittent but available 24/7 as needed. Some hospices in certain instances may provide continuous care. Hospice is not just for the person who is sick, they focus on the whole family. You do not need to be bedridden to receive hospice care. Bert will still be able to enjoy Alex’s sports and Sophia’s theater and singing. He can still lead a rewarding life. Many people think that they can no longer see their doctor if they chose hospice. Not true, Bert will still be taken care of by John’s Hopkins ALS clinic and his family doctor; hospice will work with them and together provide the best care. If at any point, Bert decides that he wants traditional medical treatment he can return to that type of care.
I hope this helps our friends and family to understand Hospice a little better and to feel comfortable asking any questions you may have. We wanted to keep our friends, family and all those that have supported us updated. We also want you all to know we feel that while ALS is a terminal illness; we do not want to spend time focusing on the end of life, we want to make the most of the time we have together. We feel hospice will help to ease the everyday stress of ALS and enable our family to focus on laughing, living, and loving every day that we are granted.
“Hope is being able to see that there is light despite all of the darkness.” ~Desmond Tutu
xoxo~ Jennifer & Bert
Yesterday we were still full of hope, just a different kind. We were looking for comfort, for guidance, for support in navigating the next step in our journey. Bert’s ALS progression is such that it is time to take steps to ensure the very best comfort and support. Hospice is the option we have chosen. John’s Hopkins ALS clinic is helping to guide us as they always have with this next chapter.
There are many myths about Hospice. The first big one being the person receiving hospice care has given up hope and will die soon. Neither are true. Hospice does not mean we have given up hope or that death is imminent. Hospice will give Bert the opportunity to continue receiving care that will help keep him comfortable and stable while addressing his medical needs at home.
Another myth is that hospice is a place. In some instances, it may be an inpatient facility but much of the time it takes place in the comfort of one’s own home which is the case for us. Some other misconceptions about hospice are that it can only be received for a limited amount of time. The reality is if a person continues to meet the criteria necessary they can receive hospice care. A person can also come on and off hospice care as needed. Hospice’s are not all the same. All include nurses, social workers, aides, volunteers and chaplains but the range of support may vary. Many people think that because someone is on hospice there is someone in the home 24/7. This is not the case, visits are usually intermittent but available 24/7 as needed. Some hospices in certain instances may provide continuous care. Hospice is not just for the person who is sick, they focus on the whole family. You do not need to be bedridden to receive hospice care. Bert will still be able to enjoy Alex’s sports and Sophia’s theater and singing. He can still lead a rewarding life. Many people think that they can no longer see their doctor if they chose hospice. Not true, Bert will still be taken care of by John’s Hopkins ALS clinic and his family doctor; hospice will work with them and together provide the best care. If at any point, Bert decides that he wants traditional medical treatment he can return to that type of care.
I hope this helps our friends and family to understand Hospice a little better and to feel comfortable asking any questions you may have. We wanted to keep our friends, family and all those that have supported us updated. We also want you all to know we feel that while ALS is a terminal illness; we do not want to spend time focusing on the end of life, we want to make the most of the time we have together. We feel hospice will help to ease the everyday stress of ALS and enable our family to focus on laughing, living, and loving every day that we are granted.
“Hope is being able to see that there is light despite all of the darkness.” ~Desmond Tutu
xoxo~ Jennifer & Bert
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