Caregiver Perspective: Mental Health Caregiving

Throughout Lynn’s journey with MS, we have been fortunate that he has rarely had to deal with any form of mental health impairment. Having primary progressive MS, long ago, he lost his ability to move productively any of his limbs and needs assistance with bowel and bladder functions. However, his mind has always functioned well. He is excellent at Trivial Pursuit games, writes very complex science fiction/fantasy novels for a living, and has more random knowledge about almost any topic related to cooking and building than you could imagine. His MRI shows practically no impact from MS in the memory centers of the brain. All his brain networks are sparking along just great, that is, they were until suddenly in April, they weren't anymore.

Sundowners Syndrome

In late April, Lynn began to experience a phenonium called “sundowners.” Each night as it began to get dark, he would take a nap and awaken not knowing where he was. Most of the time, he did not remember me. Often, he believed he was trapped in a dangerous situation and could not escape (explaining why he could not move). He would ask me about family members he thought were present. Other times, he mistook me for a different family member and asked me why I was there and when I was going home. From sundown to sunup, I never knew what to expect when he called me for assistance, and I never knew whether I would be able to re-orient him to the present time.

Physical demands of care

Over the years, the physical demands on me of dealing with his inability to move various parts of his body caused a lot of aches and pains. Due to the amount of work necessary to keep up with his care, I usually only slept 5-6 hours a night, including at least one 15-30-minute care period per night. However, exhausting that might be, none of that compares to the impact of dealing with someone who repeatedly asks you the same question – the same question- every two minutes for hours. There's no way to tune that sound out and sleep through it. Especially when the question they are asking is one that requires you to deny them a request that upsets them, and they escalate the demand over and over.

Case in point

One night, Lynn decided he wanted me to untie him from the bed, pull him into the floor off the bed, let him get up on his own and walk down the street. There is a lot wrong with that request.

• First, he was simply lying in bed on his side; not tied. He had on positioning boots that were heavy and might have felt like bonds. Therefore, I removed the boots and changed his position to see if that might resolve his issue. It didn’t.
• Second, if I dragged him into the floor as he insisted, he could potentially get hurt by the fall from his bed to the floor and getting him back up would be difficult. He didn’t care. He said that would not be a problem anyway.
• Third, he cannot walk. He has not been able to walk since 2010. He insisted I was wrong, however. “All I need to do is get out of bed,” he declared, "I'll show you. Just do it.”

No amount of persuasion or reasoning with him would correct his belief that he could walk. He persisted in his insistence until he fell asleep trying every trick, he could try to get me to pull him out of bed into the floor.

Note: It did not work. I did not pull him into the floor.

His reality

Fortunately, we discovered that Lynn's delirium behavior was due to underlying pneumonia that developed into sepsis. Though both those medical conditions are dangerous, I was very relieved that they were the cause of the behavioral developments because I wasn't sure how I was going to deal with the mental health behavior if it were to continue long term.

How to deal with sundowning: lessons I learned

My short exposure into the world of mental health caregiving gave me a deep appreciation for those who must live in that world full time. The struggles are more exhaustive than the physical challenges of the type of care I provide daily for a person with quadriplegia. Here's some of what I learned.

It's real to them

Everything the individual tells you they see and hear is absolutely real to them. When you respond to what they say to you, that response needs to reflect their concern for that real situation and make them feel safe in that situation. I know the mental health professionals say you shouldn't play along with the delusions but at that moment, to keep everyone calm, you have to treat the scene as real because it’s real to them.

They may not believe you

If the person thinks they are in a particular location and you tell them they are not, they won't believe you unless you prove it to them. If you show the person their current location, you have a better chance of getting them to understand. I took pictures where Lynn could see me take them, and he made his comparisons. Then, he was able to see he was actually on dry land and not at sea, for instance.

Don't argue with them

Don’t argue with them. You cannot win an argument with an irrational person. Walk away. This point was the hardest one for me, and I admit I didn't do very well with it. I wanted him to understand my position, and I would try to make him “get it.” He didn’t because he couldn’t. When you feel your anger start to grow, walk away till you’re calm and can deal with it all again because you cannot resolve these situations with an argument.

Check in with yourself

You don't think clearly or behave at your best when you're tired and sleepy. You're, therefore, probably not handling this situation well because you're probably tired and sleepy from being up the night before. Check yourself if you are in a position anywhere and it's not going great to see if maybe it's not going great because of you.

Lucky for us both, Lynn is now back to normal. His pneumonia is gone (took two months and three hospitalizations) and so are all of his mental health issues. My glimpse into the world of mental health caregiving truly gave me a profound respect for each of you who rise to meet the challenges every day.