I mentioned in an earlier post that I currently receive hospice care. As a severe ME patient, I know how lucky that makes me. I know the vast majority of people who have this condition like I do are left stranded with no care at all. I’ve been there myself, and it’s a terrible place. I am incredibly lucky to be receiving my current level of care, and I long for the day when all ME patients, regardless of severity level, have access to health care as wonderful as mine.
For those who may not be familiar with the concept of hospice, I wanted to explain. Generally speaking, hospice is a special service that gets called in to care for people whose doctors sign a form stating they may have six months or less to live. This care usually takes place at home, although occasionally hospice patients may stay in a specialized facility for short periods of time (sometimes this is done to give family and other routine carers a few days’ rest). In my case, all care is provided at home, since being transferred to and placed in a facility of any type would be sheer torture, and could end my life in and of itself.
Let me take just a moment here to say, hospice is awesome! This is a group of people who give all they have to make end of life care the best that it can be. They truly love their patients, often allowing a strong bond to form despite knowing the person will die soon. Hospice teams specialize in palliative care – that is, care which focuses purely on making a patient more comfortable when a cure is no longer possible. Some individuals are under the misconception that hospice workers hasten death. This just isn’t true (not to mention it’s illegal). They will not hasten death, but they also understand there may come a time when someone is so ill they no longer desire life sustaining measures (oxygen, feeding tubes, etc), and they will withhold these things without making the patient feel guilty if it is truly what a patient desires. Thus, hospice workers can be a welcome respite for a dying person, who finds they can be open with their case workers about stuff most healthy people cannot understand.
One way in which hospice care is greatly undervalued is the way in which they help the patient’s family. Not only does hospice specialize in helping smooth the process when it comes to the practical issues of dying (living will, power of attorney, any special funeral wishes, etc), they also have social workers who specialize in helping loved ones deal with the stress of caring for a severely ill person, as well as the grief after that person is gone. I know my husband has benefitted tremendously from having a listening ear – someone who understands what he’s going through and can offer non-judgmental compassion and advice. This also helps me, as it makes me feel better knowing my husband has a solid support system in place. Caring for someone with severe ME is particularly trying, so I’m glad he has someone to talk to who understands.
There is so much more I’d like to write. Unfortunately, health constraints make this impossible. I just had to take a moment to give credit where credit is due. My hospice team has been all I could ever want at this stage of life. They have taken time to study my condition (which none of them had heard of prior to meeting me), are careful not to make their visits any harder than necessary on my body, and have become the closest thing to friends a medical team can be. And while I’d like to think my team is special, from what I’ve heard, this level of care is the norm for hospices across the country – and perhaps in some other countries as well. Many times I think people are afraid when doctors recommend hospice for a loved one. They feel it means the end is near. While this may be true, trust me when I say hospice will not hasten death. They will only make an individual’s remaining life the absolute best that it can be, however long it is. That said, if you or a loved one have the chance to receive this form of care, take it! You can always leave if you get better (or for some reason decide you no longer want it). And to all the hospice workers out there: thank you. Thank you for doing what you do, and doing it so well. My life, however much is left of it, would be so much worse without you! Keep up the awesome work!