Another big change in my life situation since the TBI is becoming a caregiver for my aging mother. With the level of attention and care she needs, we decided it would be best for me to move in – so I did. While this opens many topics that will likely be addressed in this medium eventually, today the topic of a difficult patient is what’s at the front of my mind. I am beginning this entry from the Emergency Room, where she has been for the last three hours, although according to her she’s been here “all damn day…” and she’s very unhappy with the fact she isn’t in an overnight room yet.
This morning, mom was experiencing hyponatremia, or low sodium, at a debilitating level. As the hyponatremia was starting to get severe and we were waiting on the ambulance, she said, “I wish I was dead, I don’t know why I have to suffer so much.” A completely heartbreaking thing to hear from someone you love.
Hyponatremia is but one of the issues we deal with on a recurring basis. The root cause of this issue is the fact her colon was diseased so they removed it a few years back and she has an ileostomy. Both the water and the minerals normally reabsorbed into the body are now missing in her system, so the doctor has recommended both a sodium supplement and daily electrolytes – as well as a conscious effort to stay hydrated. The ongoing recurrence is due mostly to her unwillingness to follow this guidance.
This is where the “difficult patient” part takes the foreground. Just before the new year, my mother said she was “done with the doctors, and done with all the medications” because she’s “tired of it all.” She’s made this evident by pretty much refusing to take her medications most of the time, and when she does, she likes to revise her dosage based on what she thinks she needs.
While I can sort her daily meds into her weekly morning and evening pill box and remind her she hasn’t taken her morning or evening meds, I can’t force her to take them. I can call the doctor to set appointments for her, but I can’t physically force her into the car to take her there. While I can put her glipizide in her hand at meal time, I can’t make her take them. But when she gets to the point where I have to call an ambulance, she’s at the point where she really can’t fight the system any more.
Here’s where we begin to ask ourselves the hard questions as caregivers. What is the best thing I can do for my mother at this point? Do I continue to aggravate her on a daily basis by nagging (her term for “reminding”) her that she should take her meds? Do I continue to argue with her that no, the sodium pills aren’t causing lesions on her skin and should be taken at the prescribed dosage?
My mother is becoming steadily more combative, both with me and with her medical providers. How I should respond to her outbursts and her resistance isn’t clear to me yet. I don’t have many answers at this point, just a lot of questions.
Some thoughts in support of Rod’s discussion topics in his Blog: when I was a child I experienced my great grandmother Ethel stopped knowing me and only remembered one song. There was nothing I could do, and she died. Her daughter, my grandmother Bluma died in 2018 at the age of 99.95 years old; my sisters and I saw her 6 hours before passing. She did not have dementia but could not understand me with such bad hearing. The lesson was if you see someone go on morphine, you had better go there because they are going to die. Then I cried at my grandfather Harry’s gravesite, and arranged for Bluma’s burial next to our mother Elaine. I remembered how when Harry who died of liver cancer, was in so much pain he poked his Love SaraLee with his cane but she did not get angry because he was sick. After that Grandma SaraLee got sick and died of spine cancer, she taught me how to die with kindness and grace. Now that our 30-year old daughter Brooke is confined to a wheelchair she hates me, will not acknowledge me and thinks I am trying to hurt her which is not true (there is no reason for a father of 5 children to reject one of them). I am not angry because Brooke’s neuropathy did something to her brain. I encourage my wife Monica to not get her feelings hurt because Brooke is constantly mean to her too, even though Monica is Brooke’s sole source of food and transportation. Also, rest in peace also to my father Jim, grandpa Andy, Aunt Kathy, Aunt Patty, cousin Keith. I miss my two sisters Nancy and Janet who live in NC and CA. The final lesson is ultimately family is what is most important, and family does not need to be blood related. Being patient with sick people is good.
Thank you, Adam, for your heartfelt comment. Being a caregiver, albeit a labor of love, is possibly the most demanding task that many of us will ever undertake. This is especially true when the person we care for is suffering from a brain disorder and has become someone completely different from who we once knew. Patience is our greatest requirement and all too often we find it to be in short supply.
In my continued searches for guidance and inspiration, I’ve learned that there are many web-based resources out there for caregivers. I am putting together a Resources page for this site that will list ones that I felt were especially helpful. For now, I’d like to share a page with you that I found on http://www.CareGiverStress.com that presents “10 tips that may help when your patience is being tested”:
(https://www.caregiverstress.com/2012/08/looking-for-key-ideas-on-how-to-have-more-patience/)
For me, probably the most relevant and helpful was the final tip that recommends having someone you can talk to, whether someone on a similar path, a support group, or even a friend or loved one who can listen and provide support.