Navigating Through Relationships Part 1:
Taking Care of Yourself While Taking Care of Others
Karen Tripp LMFT
“Nothing has been the same since my husband was diagnosed with MS.”
Theresa, MS CarePartner
Being a caretaker isn’t easy. Actually, it can be stressful, exhausting, infuriating, depressing and it can even make you sick so someone then needs to take care of you.
- 62% of caregivers said their own health suffered as a result of caring for a loved one.
- 70% said their families were not working well together on a care giving plan.
- 46% said they had inadequate financial resources due to care giving.
(Journal of Family Nursing JFN)
One goal of a caregiver is not to be one of these statistics.
Types of Caregivers
- 1. Primary Caregiver: involved in interactions with medical staff as well as helping patient with their physical needs ie medical visits, giving prescriptions, food, etc.
Goals of a primary caretaker:
- Multiple goals concerning the physical treatment of your loved one.
- For your relationship with your loved one to grow through the struggles of cancer.
- For you to be healthy and be supported by a secondary caregivers and support group.
- To take care of all the responsibilities you had before the diagnosis.
- 2. Secondary Caregiver: Everyone else that physically cares for the patient and/or the caregiver.
Goal of a secondary care giver: to take care of the care giver, the home and remove stresses when requested. The primary caregiver needs to be cared for so they can care for the patient. #1 goal: to decrease isolation.
What can Secondary caregivers do?
This isn’t only about having someone take care of your “needs”. Multiple Sclerosis teaches us all the things we do not need. This is a list of things that will ease your mind and reduce your stress.
___ Take a care partner to lunch, movie, fishing, ballgame, etc
___ Take the person with MS to lunch, movie, fishing, ballgame, etc
___ Fix things around the house
___ Fix things in the yard.
___ Ask about how the primary caregiver is doing.
___ Include in holiday and family events.
___ Pick up a prescription, run an errand.
___ Call once a week to check in.
___Take them to a doctor’s appointment.
3. Core Support Group: Who can you answer “How are you doing?” honestly? This might include some of the people from the above and it might not. They can live anywhere. Their role is to not provide just physically but emotionally. They visit, call on phones, emails, check in without concern they are a nuisance. You have let them into your inner circle. They know how you are really doing. Multiple Sclerosis often comes with a dose of loneliness and isolation that this group can help alleviate.
If you had sat down a month before your diagnosis and made a list of everyone that you knew would be there for you the odds are some of the people on your list have been a great support but other people that you thought would be there for you are nowhere to be seen. Yet people that you would never expect or people you have just met are tremendous support.
Alan Wolfelt says that in times of need, people respond in one of three categories:1/3 are empathetic, 1/3 are neutral and 1/3 are harmful. It’s OK to distance from the harmful people in your life but make sure you are engaging the empathetic. If you do not have anyone empathetic, join a support group. Everyone needs a place where you have permission to talk about MS. Our tendency is to think: “They don’t want to hear about this MS stuff anymore.”
Building Your Core Support Group
Typically, avoiding the topic of MS is not a decision, it’s a response. Yet the unspoken topic creates isolation at a time people with MS and caregivers need connectedness and unity. Choose to eliminate the toxicity of not speaking about MS by finding ways to share its impact with a select group of friends and family.
You need to find a group of people which…
You do not need to put on a happy face.
When you ask how they are doing they do not say “fine.”
Do not stop talking when you walk in the room.
The way to develop a core support group is to open up a level of honesty about your struggles. This will decrease your isolation and amazingly, by sharing more you will feel like a burden less because you are connected to the person.
Find ways to overcome your compassion fatigue by reaching out to others. It’s not your loved ones fault they have ongoing needs and it’s not your fault that there’s times you are worn out from the care partner roll. The best way to avoid compassion fatigue is to avoid isolation through connects with others. Sometimes you need someone to talk about MS. Sometimes you need a night away from anything having to do with MS. No one knows your needs but you.
Who is in your life?
Place a name of someone you could say the following statements/questions to. Try to have several different people.
“How are you handling my MS?” ___________________
“You seem moody. Are you thinking a lot about your MS?” ___________________
“Let’s make the plans but please understand I might be too sick to go.”_______________
“Can you come over? I don’t feel like being alone.” ____________________
“Instead of dropping off the meal, will you stay and eat with me?___________________
“Yesterday was a really bad day.” ____________________
“Sometimes thisMS makes me angry/sad/frustrated/crazy.” __________________
“This MS seems to have changed the way you act around me.”________________
“I’m not sure this treatment is working.” _____________________