Some residents of Dubuque and elsewhere may view end of life care as an invitation to start breaking all the rules. After all, if you only have a certain number of days left in your life, why not cut loose and do the things that you weren’t supposed to do when you were in better health?
There is some emotional value to considering this approach since many of the preventative medical restrictions imposed by a health care provider earlier is thought to be suspended once someone officially begins their transition to palliative care or hospice care. Some patients even describe the feeling of a weight being lifted off their shoulders to some degree– it may not lead them to go out and deliberately do dangerous things like starting smoking or going hang-gliding, but there is sometimes a sense of freedom.
The team at Above and Beyond Home Health Care and Hospice are familiar with some clients having these feelings. They may especially enjoy the removal of certain dietary restrictions like cutting out salt or sugars that may have been in place for years. Patients who have terminal cancers may also enjoy being done with chemo or radiation, which both can be draining and at times painful treatments. These treatments are typically halted once someone enters hospice.
But at the same time, the clients are still considered active medical patients so they may benefit from regular check-ins and observations with a provider or some type of nurse.
Regardless of what condition they have that’s terminal in nature, they can also still be affected by other diseases or infections, such as seasonal colds, the flu, or even COVID-19. Clients should also take steps to keep their health at optimal levels and their immune system as high as possible, which means eating and sleeping well, exercising, bundling up when going outside, and following local or state contamination protocol.
The main guideline is to pay attention to their body and what it’s telling them it has the energy for – you’re not going to want to go out and carouse well if you barely have the energy to get off the couch.
Importance of rituals
Another area where people receiving end of life care may appreciate is the establishment of or the following of certain rituals.
Rituals don’t have to be religious in nature, although some clients may find they appreciate going to a familiar worship service or saying the same prayers that have helped provide them some degree of comfort in their past or even the present. Even if they can’t attend in person anymore, many services and celebrations are televised or streamed over the Internet.
A ritual at home can really consist of doing the same task, almost like a habit, but in a good way.
It can be a certain order of activities that a caregiver may follow each day, whether they live on-site or come to visit.
It could be a similar schedule of appointments and activities throughout the week – Tuesday is massage, Wednesday is physical therapy, Thursday is occupational therapy, and so on.
It could even be a schedule of certain favorite meals that the client, the caregiver, or family members prepare.
Once rituals are set up, they can help provide comfort as well as stability even if other things in someone’s life are feeling crazy, scary, and out of control. And that’s pretty much how many people at this time of life and their families feel.
Rituals can also provide something people can anticipate – if their day isn’t going well, they can look forward to an upcoming day that promises to be better if something is scheduled to happen routinely.
Larger rituals can even help the client and people around them know that even though things are scary and different, there are some things that haven’t changed too much. This could be the reason for everyone getting together for a holiday meal or a traditional family activity.
Sure, it might be dramatically different next year when a certain guest of honor is gone, but at this moment in time, the ritual will be enjoyed by all. Time to break out the “special occasion” dinnerware and maybe a bottle of wine.
If you’re the one encouraging people to follow rituals are much as possible, you can even leave “final instructions” to loved ones to preserve this ritual and get together on a regular basis. Chances are everyone will also appreciate continuing this into the future and toasting your memory.
Creating a ritual doesn’t have to be anything especially formal and codified either. It can simply be a fun new pattern or activity. You might even consider a variation on existing rituals – if you don’t think you’re going to be around for the next holiday season or even the next birthday, come up with a new holiday that everyone can get together and celebrate, with special food, music, and activities. The more fun and the better memories created, the more likely your rituals will continue.