Living With Dementia

Mom passed away three years ago today. After initially being diagnosed with Parkinson’s Disease, it was a few months later, at the University of Iowa Hospitals, when she was diagnosed with vascular dementia. As her world (and ours) fell apart, I realized that Mom’s behavior suddenly made perfect sense. I also became startlingly aware that, even though we now knew what was wrong, it still meant that there wasn’t anyone who knew anything about how to help her.

That may very well be the hardest thing when someone we love is diagnosed that way. It is so little understood. That, plus the combination of damage is so snow-flakey to make deciding a course of care a moving target for even the most seasoned of medical practitioners.

In Mom’s case, the disease meant that, in any given day, she was experiencing hundreds upon hundreds of micro-strokes in her brain. The combination of damage across the brain’s infrastructure gave rise to bizarre outcomes, most in the form of hallucinations, some beautiful and astounding, others astounding only in the magnitude of their horror.

Mom was cared for by a team that included a neurologist and a social worker. It was the kind and experienced social worker who gently, yet firmly explained some unpleasant truths about dementia to me for the first time:

It doesn’t get better and it’s not curable. There are no miracle drugs or brain exercises that will stop dementia from getting worse. There are a couple of drugs that can sometimes briefly slow down the memory degradation but they’re not effective over the long term.

They’re not the person you knew. Mom, as we knew her, was gone. There were bits and pieces of her remaining but those pieces would only surface randomly over her last months, weeks and days.

They’re not crazy, lazy or spiteful. They are, however, confused and scared as hell. They will cry, scream, lash out and tantrum. One of the first things to go in memory impairment are “social filters”. People with dementia lose tact and diplomacy. They say precisely what they’re thinking. Try not to take any of it personally.

They are devolving, not evolving. People with dementia or Alzheimer’s are losing their acquired physical and mental skills. For example, Mom went from walking to using a cane to a walker to a wheelchair in the span of a few months.

Do your best to accept it and move forward. The best I could do in this situation was to manage her decline and passing as gently and carefully as possible.

The social worker further explained that we had just three responsibilities from that point forward:

1. Ensure her physical safety.
2. Make her comfortable.
3. Reassure and love her.

That’s it. Nothing else can be done, except to begin to absorb the idea of her being gone. Soon.

This new paradigm shifted my focus from “making Mom better” to “making Mom comfortable”.

None of this made coping with Mom magically easier, but it did provide me with a huge amount of relief in finally understanding how to cope with it.

The best advice anyone can offer others facing this is to filter ALL potential actions under consideration through the above three criteria: Safety, Comfort, Reassurance. If a contemplated action doesn’t fulfill (or help fulfill) all three criteria, discard it and seek alternatives.

This simple model became crucial in making intelligent and informed medical decisions for Mom…especially in her final weeks.

Like the topic of mental illness, no one talks much about dementia openly. However, when I am led to address it naturally in casual conversation, someone immediately jumps in because they don’t know what to do with it, either.

This post is by no means a guide on how to care for someone with dementia or Alzheimer’s. This is just one story of how confusing the experience was in trying to find someone who could help define it, if nothing else, so we’d at least know what to expect. The symptoms of both diseases are so similar, feel free to substitute “Alzheimer’s” for “dementia” – the medical profession sure seems to.

fall leaves on the ground fallen from treesIn addition to what the social worker taught me, I also learned way more about estate legalities: wills, powers of attorney, medical powers of attorney and living wills and POLSTs (Physician’s Orders for Life Sustaining Treatment). I learned about legal rights regarding eldercare, who has them, who SHOULD have them and how to distribute them using best practices from attorneys who have seen it all. I had to pick up on these things on a forced march because it was all happening so fast and, like most families, no one else wanted to think about it or confront the fact that it was happening. My advice: don’t delay. Having it all aligned when you need it can offer some peace of mind otherwise replaced with stressful decision-making during a crisis. If you have the chance to get it all in order beforehand, you will want to do so.

I recommended support groups, too. Hearing about others’ experiences never hurts. I recommended them to Dad, who was not at all himself during and after. He chose not to participate but it may have helped him process being single for the first time in nearly 50 years. Who knows? It was only a year and a half before he left us, too, so perhaps it wouldn’t have mattered much.

If you are interested to find such a support group in your area, try searching online for “dementia caregiver support” + your city or county’s name, or start with “health services” or “alzheimer’s human services” + your city or county’s name. There are people committed to helping those who need it. Don’t be afraid to reach out to them if you could use some, even for just a little while.

There’s also an extensive network of Alzheimer’s/dementia support groups affiliated with the Alzheimer’s Association. To find a local support group, try:

Along the way, I kept a highly detailed blog, visible only to me and a small circle of friends. At the end of some particularly trying days, writing out what had happened helped me in big ways. And long, long walks.

Mom gradually began hallucinating more and more and continued to see some pretty intense things. Out of the blue, she’s say things like, “Don’t wander too far from the house”, something she used to say to me when I was a little boy. Twisted my head right off. Brought me to my knees at the most inopportune times, later on when I’d return to work, life. These kinds of moments made spending time with her unpredictable and often required some hours of processing afterwards. Fortunately and unfortunately, the drive from the city to spend time with her at the time was >13 hours round-trip, good for processing but bad for those middle-of-the-night or middle-of-the-work-day phone calls. I constantly reminded myself to take my time. To be present. To let it all wash over me, no matter how excruciating.

Barbara CaleaseI am grateful it only went on for a few months before, one day, she stopped talking. After a few more days she stopped eating and drinking on her own. She would occasionally take food or drink offered to her by Dad or I but, finally, she stopped responding to offers of food and drink, too. We wondered how long she would last. Upon our last meeting with the primary doctor at the facility, he said, “She’s got about a week left in her.” That was a Monday. On Wednesday, Mom passed away quietly in the middle of the night as I lay sleeping beside her. When she passed away, it was in a pleasant hospice facility with a loving and caring staff (it may be worthwhile to share my experience working with care facility staff in a separate post).

If you are in the midst of dealing with dementia or Alzheimer’s, or someone you love, you know by now it is a lonely experience. You aren’t alone, though. It is a lonely struggle but, if you happen to find this, from my heart I hope my words offer, if not some reassurance, a pleasant distraction that others can relate to how you may be feeling and have experienced similar things.

While most of these things don’t ever get easier with practice, sharing our feelings with each other can help us begin to heal from the experience and in turn share with someone else who may need to hear it, too.

On the list of things that do not get easier with practice, saying goodbye to those we love is top of the list.

There’s no way to make any of this even almost bearable. If you’re enduring it, you’re certainly not alone.