The goal of Caregiver’s/Care Partner’s Corner is to help those who are spouses, family members, caregiver’s/care partners to someone with Multiple Sclerosis and hopefully provide helpful information to everyone on what it is like to live or know someone with MS.
In addition, we hope that in the future we will be able to provide a list of resources that the Care Partner can connect with for additional support.
When a Care Partner attends a meeting/patient program, we encourage them to get involved and not be afraid to talk to other Care Partner’s about their experiences and also ask questions of the medical professionals and patient advocates to help them gain a better understanding of MS.
We encourage caregivers and care partners to be an active part of this section of the website by submitting your ideas, suggestions on how to improve this section of the website and submit articles on being a spouse caregiver or care partner.
As a former nurse, and as a current caregiver, let me emphasize to you the importance of your role as a member of the healthcare team. If you ever doubt your value, let me assure you that you are valuable beyond measure.
In years past, doctors made all decisions related to patient care and treatment. The healthcare team stood in awe around him as he mystically absorbed the details of his patient’s condition from the aura surrounding the patient as he entered the room. I suspect that he came to his diagnosis through a combination of good physical assessment techniques and excellent listening skills. The listening skills he used to collect bits of information from the patient, family, friends, servants, and others who each had a piece of the story to tell.
When I accompany my spouse to the doctor, I can tell his healthcare provider which organ(s) of his body function correctly and which may be malfunctioning based on changes I’ve detected in color, odor, volume, patterns, frequency, trauma, change to routine, or other difficulty being encountered with an organ, limb, or area of the body. Having access to this vital information provides the healthcare team with direct insight into a host of details that they otherwise would not know. When the physician can collaborate on concerns, together we identify the best possible solution and his medical team does not waste time trying tactics that would not be effective.
My spouse and I prefer to be admitted to an academic medical center whenever hospitalized. I have friends who complain they don’t like that setting because too many teams of providers come in and out of the rooms, and it’s difficult to know who’s who. With so many people involved in making decisions, the risk of a mistake occurring can be a possibility, but with so many eager new residents searching for answers, you are also likely to get the latest, best researched, and most debated options possible. As part of the learning process, each team conducts grand rounds where the full squad travels together, including the attending, first through fourth year residents, the fellow, a 4th year medical student, the patient’s nurse, a nurse practitioner, hospitalist, maybe a social worker, therapist, and anyone else assigned to the case. One key team member summarizes the situation for the rest, updates from the prior report and they kick around what to do next. It’s the perfect way to keep everyone current, well informed, and information accurate.
I’ve now started attending ground rounds on Lynn’s case whenever I’m there. I don’t think many family members invite themselves to these sessions because I get “the stare” of “what are you doing here?” and then a whisper starts around the perimeter till it reaches the attending (the one in charge of rounds). The attending usually stops and asks if they can answer something for me, and I explain that I’m the wife and want to listen. Most of the time they say okay; sometimes they try to talk me out saying I might not understand the jargon, but no one has kicked me out. At some point, someone says something that is incorrect or the attending asks a question that no one knows the answer but me, and I speak up.
At that point, I teach them why I need to be there, and the entire focus of the grand round changes. I then start feeding them additional clarification on assumptions they made previously that were wrong. I tell them our story — the correct one. I help them to see how assumptions lead to mistakes and can cause harm. I remind them that I’ve been there all along and could have been part of the team from the beginning and should have been and encouraged them to remember this always.
After that, each morning they look for me and smile when I join them. If an answer is unknown, the team looks to me for it. The group asks me for my advice, and we genuinely develop a partnership in my husband’s care. Creating a mutual collaboration with the team demonstrates respect for our codependence on each person’s role and our need for one another. We must interact this way every time. As a caregiver, we must be engaged regularly with the other members of the healthcare team — at the center of the team in partnership at the head of the table.
I wrote the following for poetry week at work as an expression of the above. The poem appeared in the hallway near an exit, and I understand that several family members were overheard agreeing with its sentiments. You may also find that it rings true with you. I hope you enjoy it.
Don’t you hear that? Don’t you see the difference?
It’s not the same.
Trust me, I know. I can tell. It’s not right.
I don’t care that the lab work is normal.
I don’t care that he looks good to you.
I don’t care that you’re an expert in illness.
I am the expert in him.
In our world of daily living.
We are one. I know something’s wrong.
I know his every breath.
I know what every sound means
I know where every pimple, pink spot, dark bruise, or open tear appears.
I know his smells-good and bad.
I know his body temp-good and bad.
I know his moods-good and bad.
I know his changes-good and bad.
Just like an artisan working his craft
I am an artisan of healing in his life.
I know him.
I know what works and what doesn’t.
I know how best to apply healing.
You need my help.
I keep you from making mistakes.
I stop you from assumptions that harm.
I am your partner, not your enemy.
Something’s different. Something’s not right.
Listen. To. Me.