Normally my blogs take different turns. Primarily dance Mom related or I will even stray into speech language territory, but today I decided to blog about a topic for which I feel a bit cursed and a bit blessed to have experienced. Today, while it is fresh in my mind, I want to speak on the experience of an elderly loved one in medical crisis in the hospital. The featured image for this blog is my beloved 76 year old Daddy, suffering from lung cancer and emphysema, who often sees the inside of a hospital, but the precipitating event for this blog was actually my 81 year old father-in-law, who has never been sick a day in his life dealing with a pretty rapid 6 week decline that ended in a hospital experience.
This is no medical experts blog on appropriate procedure, or insurance expert blog on navigating the system smoothly, nor even so much of a what to expect blog, though I will incorporate some of this into my writing. In this I hope to share thoughts and feelings so you, the reader, may view the event that will surely throw your own life into an unplanned tizzy as a huge blessing. I have sat at the bedside of my grandmother, father and father-in-law and can certainly share some of the similarities to hopefully help others facing this path.
In general, the trip to the ER is rarely expected. For the elderly, it often involves declining health for which a hospital stay of some length is inevitable. No one wants to have their loved one need to be admitted to the hospital, but it is certainly a stage in our lives that we will eventually face if we are blessed with parents who live longer. Our Mommies and Daddies took care of us, ever our heroes and helpers there when we need them to kiss our scrapped knee, we rarely want to think of them as frail or worse yet, of the time when they may not be there for us. While I will initially start with some organizational and functional tips to make this experience easier, my primary goal is to share a deeper perspective.
First off, let me give you a bit of insight in what an ER visit turn hospital stay will likely look like, regardless of the hospital you choose. First, you check in at the ER. The length of time that takes is entirely dependent on the amount of demand and your loved one’s level of symptoms. It is a triage system designed to prioritize emergency medical needs over non-emergency. You will have a myriad of professionals coming through telling you information and ordering a variety of tests to determine what is going on. Given the emotional stress you are facing and the fact your loved one is not at 100%, I do suggest you have a notebook on hand. You can write down what is said and any questions you may have when the professionals are not in the room. These professionals often do what I call a “fly by” visit where they spew a great deal of medical terms very quickly and turn in a flurry and leave. You have every right to ask questions, slow them down, tell them to define things, etc. If you have a medical professional in your family that can be there with you, it is very helpful with terms and doctor speak. Being a woman, I have the struggle of the male doctors actually talking to my husband, who has not a clue about medical stuff even when I am asking questions or taking notes. You also have a right to not deal with misogyny during this time of stress and you can politely call them on that too, but keep your eye on their female assistant’s face in the background because she will get a very big grin and proud look after you do. Hospitals may be quick to try to discharge your loved one before you have answers, which is due to Medicare and all their rules. You have rights to contest that, so it doesn’t hurt to be looking up those rights on your phone during your hours of just sitting.
Speaking of just sitting, you will be playing the waiting game so having an activity bag is handy. What I find is that loved ones feel guilty about you just sitting there and will socialize instead of rest, but if you have things you are quietly doing, they are more likely to rest. Once your family member is admitted into the hospital, next comes the guessing game of when to go home and when to stay. This decision is all dependent on what is going on. A severe medical emergency that is life threatening may require round the clock family monitoring and hopefully you have some help so that is not all you. A parent that has a reoccurring issue such as pneumonia may only need you there during doctor rounds. A patient who is seeking diagnosis of a recent severe health decline may be somewhere in between. What I have learned from my experience is that the patient invariably dismisses the family members to go home; however, I recommend you not listen to the patient but to your own gut.
For those who have elderly family members which may need some hospital care, I suggest a ‘go’ book ready in your own home for emergencies. In that book, you have your family member’s blood type, allergies, medicines, diagnoses, surgeries, treatments, etc. that you may need to know if the actual patient is unconscious. I also know where my parents keep their medical insurance information and social security information so I can look that up if needed. While most of us don’t want to think of these possibilities, it is good to have around. Additionally, if your loved one has multiple tests and doctors, I recommend a three-ring binder with page protectors for them to slip information and papers in for easy retrieval and reference. You can clip a calendar to the front of the binder to help with Doctor’s appointments.
When you are trying to figure out when to be at the hospital and when not to be there, keep in mind that Doctor rounds often begin at 7am and their shift ends 7pm so they may visit you anywhere in between that time. The important time for family to be present is when the Doctors or professionals are there sharing information and since they don’t give warning on that information; you may just need to sit. The hospital team doctor will be the person who will tell you all of the professionals that will come through. Once you know who will come through will allow you to know when to take a cafeteria break or a home break. Take notes when the professionals are there. Hopefully, you have a team of family members helping so when one family member is not there, they can pull up the three ring binder and read the other family member notes. Now here is the sad fact, you have no idea at what point between 7 am and 7pm these doctors will stop by, you just need to wait for them. I found they all seemed to come in waves right when I went to the bathroom. They will tell the patient the information, and while your loved one may be fully competent, they are sick and sick brains don’t remember as well as healthy ones. Make sure your loved one understands that they have the right to say, “my daughter is just outside on a bathroom run, please wait.” Most of your doctors and professionals will be wonderful individuals who want to help and deserve pleasant interactions. Sometimes you will get a doctor who has come in and clearly not read the chart. That is dangerous and you have the right to politely request the doctor go read your chart then step back in and talk to the family more knowledgeably.
In general, if you are reading this as a family friend, a family in crisis doesn’t need another body sitting at the hospital with them unless they have asked for one. Offer specific help, such as, can I bring you a book? Can I feed your pets? Can I help transport the kids to choir? If you ask, “what can I do?” the answer will always be nothing, even if there is something to do. If you don’t have a beautifully cooperative family who shares responsibility, I am sure you do have friends who would be willing to help you with the sitting game, but won’t insert themselves in that personal journey unless asked so ask. If you the caregiver are too exhausted, you can’t help your loved one. Hospitals do have case managers that can help plug you in to services to help you as well.
Now everyone is stressed at an unexpected health crisis. There are some things that you stop your life for and this is one of them. Your loved one may be snitty or grumpy, but you need to remain calm. What I have been able to observe of families not used to these situations is a tendency to make the sick individual feel like a burden when they are trying to help. Allow the individual to direct you on how they would like helped. Don’t rush to do everything for them as if they were an infant, this will only make them feel embarrassed and result in unpleasant exchanges. If they ask you to move the blanket three inches closer, move it three inches closer. Don’t jump up and cover them entirely with the blanket. Maybe only one arm was chilly. It is likely your elderly relative is grieving the loss of independence, dealing with reality of aging, scared about what is happening and feeling guilty about using up your time, so be sure you are not doing anything that would add to the already overwhelming myriad of feelings.
On a deeper level, I have found the times at the hospital with my loved ones have always been a joy. Yes, there are the unpleasant aspects of bodily fluids and pain, but when else do you have an opportunity to just sit quietly beside a person. To throw all aspects of your own personal needs aside and place another solely first, pouring pure love on them. These times have provided moments of reminiscing, stories I haven’t heard, information I didn’t know and a deeper understanding of this person who has cared for me. Given that I now know that, I have begun to include in my activity bag a notebook and pen to write down these oral histories so as to preserve these precious moments. I have learned by sitting ever so quietly I can be the recipient of profound wisdom and vulnerable feelings; such a sign of trust and love. I wouldn’t trade it for the world. If you have the honor of ushering someone from this world to the next, I would implore you to treasure that privilege. While no one wishes for illness to occur, if you view your ability to take care of your loved ones as an opportunity rather than an obligation, I think you will find that everything, regardless of the outcome, will go more peacefully.