An interview with a Migraineur Caregiver
A Little History
My husband, Michael and I both have Young Onset Parkinson’s disease. However, I also suffer from Chronic Migraine Syndrome and Fibromyalgia. While we find ourselves in even a rather unique situation of being both patient and care partner when it comes to Parkinson’s… Michael still has to deal with the constant onslaught of basically a never ending migraine when it comes to his lovely wife. For a person who deals with Chronic Migraine Syndrome, you are never really free of Migraines, it is more a level of pain. I have come to learn, after 30 years of dealing with them, that I can usually function fairly well if I keep the pain level under 7. At 7 we start to have some issues and anything above 7 we are heading for the bed, the ice cap, and the rescue shot of Sumatriptan!
In this article I decided to interview my care partner to get his feelings about this Migraine Journey, because it is not just mine, but his as well.
Describe your role as a care partner for someone with Chronic Migraines?
Michael: To make Gretchen feel as comfortable as possible. I eliminate distractions as much as possible, providing medication, and seeing that her basic needs are met. I also will darken the room, hold her hair back if she has to throw up, and try to find something easy for her to eat. I try to stick pretty close to home, as I never know when things will escalate to a trip to the Emergency Room.
Do you ever resent Gretchen?
Michael: That is a loaded question! I do not resent my wife ever! But I hate the migraines for what they do to her. Resent is rather a harsh word, I REGRET, the time that we could be doing other things, or the times we have to cancel plans because Gretchen has a migraine. I regret that my wife has to go through so much pain.
Feelings of helplessness
Describe in one word how you feel about the situation?
Michael: HELPLESS! But I think Gretchen and I share that same feeling! But as a care partner I feel helpless when she has taken all of her medications and is still in pain and the migraine goes on for days without an end in sight. Helpless to FIX whatever is wrong! It has also been very FRUSTRATING trying to find a migraine specialist in our area after the one who was treating her left. Sorry, I guess that would be two words!
Can you describe a situation that makes you feel most frustrated?
Michael: The level of pain that Gretchen has to go through. From what I understand, the pain level is intolerable and there is nothing I can do to ease that pain. When nothing seems to help and the migraine lasts for days and days… I get frustrated, not ever at Gretchen, but at the situation, YES!
How frustrating are trips to the ER?
Michael: Oh! Don’t get me started there! Extremely frustrating! Because often the ER personnel only treat Migraines by applying pain medication that can trigger a rebound Migraine or can make Migraines worse. ER protocol needs to change in many hospitals and they need to become more educated about Migraines! They have also treated Gretchen like she is drug addict seeking out a quick fix, prolonging pain relieving medication simply because after 30 years of this, we KNOW what needs to be given and are verbal about it.
Advice to other caregivers
What would your advice be for other care partners of Migraneurs?
Michael: Educate yourselves as much as you can about Migraines! It is not their fault. Practice patience and the more helpful you can be to your Migraineur, the less stress they will be in, and that can really help them. So you miss a visit to your friend’s house, it is more important to show your love and support and be there for your partner. Do not be afraid to stand up for them in the Emergency Room. Go with them to the doctors in you can. It helps to have someone at least try to understand what is going on with them.
I would like to thank my husband, Michael for his candid answers. For his caregiving, and support! Migraines are a family affair and how the family responds to the person with the Migraines can have a huge impact! We have enough guilt and pain going on… We do not need any more! We DO need some understanding, love and maybe our ice packs changed out now and then!
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