Eleven years ago today – July 11, 2010 – which was also a Sunday, the sometimes bizarre, always unpredictable behavior that Mama had been regularly exhibiting since the fall of 2008 reached its critical mass. The week before had been very stressful. Mama’s paranoia and anger were at full-tilt and she spent the week crescendoing out of control.
I visited her every day at her apartment in the retirement community she had just up and decided to go to in late 2005. It served her well, but I can remember my surprise when she just suddenly announced to me that she was moving out from living with me to this community in town. Continue reading →
A new type of dementia has been identified. While it may look like Alzheimer’s disease, it differs in significant ways. Researchers suspect it’s even more prevalent than Alzheimer’s disease – and may be part of a mixed-dementia diagnosis – but that remains to be seen.
The new type of dementia is called limbic-predominant age-related TDP-43 encelopathy or LATE dementia. The symptoms of LATE dementia and Alzheimer’s disease can appear to be similar, but while Alzheimer’s disease is the accumulation of plaques (beta-amyloid proteins) and tangles (tau proteins) in the brain, LATE dementia occurs because of the misfolding of accumulated TDP-43 proteins in the brain. Continue reading →
We’ve talked many times about making sure you have all your healthcare documents updated and on file with your healthcare provider, as well as providing them to your healthcare proxy (the person who has medical power of attorney if you are unable to make decisions for yourself).Continue reading →
The Good Care Group is based in the UK, but these guidelines are useful for all of us, regardless of what country we live in, who may be seeking live-in caregivers for our loved ones with dementias and Alzheimer’s Disease.
Three Useful Tips to Finding The Right Live-in Carer
When considering live-in care, one of the many questions you are likely to ask yourself is “what steps should I take in order to choose a carer who is right for me?”
In my neurological and neuroscience research and reading over the last several years, Patient H.M. came up frequently, but with very little detail except that his postmortem brain was used to do the most extensive open source brain map to date and that he suffered from profound amnesia. Continue reading →
Glen Campbell was one of the first country artists to make the successful crossover into Top 40, blazing the trail in the late 1960’s and early 1970’s for a few other country artists (Alison Krauss, the Dixie Chicks, Jason Isbell, and Sturgill Simpson, to name a few) who would follow him decades later to also be successful crossover artists.
My parents liked his music and that is how I became aware of Glen Campbell. Continue reading →
A fairly recent longitudinal study of older people with hearing loss that was conducted by John Hopkins University discovered that, over a period of 10 years, people who entered the study with any form of hearing loss showed a much faster rate of brain atrophy – hearing is a neurological process that takes place in the left and right auditory cortices located in the frontotemporal region of the brain – than people who had entered the study with normal hearing.Continue reading →
Seven years ago today, I got a phone call at 7:15 am that I was expecting. The eight or so months preceding this phone call had been hell for both Mama and me (not all the time, but most of it).
It became apparent in those months that something was clearly wrong. Mama knew it and it scared her, and that made her defensive, hostile, and combative. I knew it, but didn’t know exactly what it was or how and what I could do about it.
Mama lived ready to fight. I lived ready to catch her when she fell, walking on eggshells, trying to keep things as sane, as calm, and as peaceful as was within my power.
These months took their tolls on Mama and me both in very different ways.
Fortunately, that phone call I received early in the morning seven years ago today helped relieve the toll on Mama in ways that she needed. I, on the other hand, still bear a lot of open, gaping wounds that may never heal from the toll it had on me.
Dementias change everybody who is involved and many of those changes, especially for those of us directly in the war zone with our loved ones, can’t be undone.
I’ve had people who’ve never been through any of this and who have not lived my life tell me they know what it’s like and they’ve walked in my shoes. And then the “I know what’s wrong and how you need to fix it because nothing will change until you do this” follows with condemnation and criticism instead of empathy and compassion.
In my opinion, there is nothing is more insulting, insensitive, or hurtful than having this happen to a person. I have to forgive – and I have – because that’s my responsibility. But wisdom must accompany forgiveness and wisdom says that it’s not healthy to keep these kinds of people in any kind of close proximity in our lives.
I’d give my life for any of them. I’d help them with my last breath if they needed it. I love them, but to keep them near or in my life isn’t possible because it’s not healthy for me nor, frankly, is it healthy for them. That time will come, but that time is not now.
My 7:15 am phone call seven years ago today was from a psychiatrist at a local hospital. She said Mama had been transported, after she called 911, at 3:30 am to the ER. The psychiatrist was going to involuntarily commit Mama to a geriatric psychiatric hospital and wanted my permission (I was Mama’s medical power of attorney).
I gave my permission because that’s where Mama and I were in our journey through dementias. I knew that’s where she needed to be, even though it broke my heart to think about it.
The psychiatrist gave me instructions on how to change the commitment to voluntary and told me what to bring for Mama at the psychiatric facility later that afternoon.
I hung up the phone, knowing that our lives had just permanently changed forever. And I got to work immediately adapting to that change.
Within the space of the next two weeks, we had a diagnosis of mid-to-late-stage vascular dementia and Alzheimer’s Disease (I also realized Mama had Lewy Body dementia after her release from the psychiatric hospital because I researched all the things I was seeing beyond the other two types of dementia).
The most harrowing part of all of this was the geriatric psychiatric hospital.
When I was admitted for the first time the afternoon of July 11, 2010 to change Mama’s commitment to voluntary, with me as the responsible party, and to deliver her bag, my immediate reaction was to rescue Mama and take her home (she actually wasn’t there yet and was rolled up in a wheelchair while I was completing her admission, but she didn’t see me and I don’t know, as bad as her psychosis was then, that she would have recognized me anyway).
It was Bedlam.
The stench from urinary and bowel incontinence from the people walking agitatedly or sitting and screaming in wheelchairs around me literally took my breath away.
The intense chaos and high noise level was so uncomfortable for me that I wanted to take Mama and run far, far away.
The deep compassion and empathy for these people, despite all the other stuff, made my heart break even further and it took all I had not to just melt down into a sobbing mess.
But I held it together for Mama. I was there every day at the times I was allowed to visit. I called every morning first thing and every night last thing to make sure Mama either had a good night or was in bed safely tucked away.
Two weeks of that routine and that place left its indelible mark on me. I can barely think of now without shedding tears.
But the two weeks that followed this day seven years ago got Mama on a medication regimen that alleviated many of the symptoms of her dementias and, all in all, made life more bearable and easier for her.
And for that I’m profoundly grateful. It makes everything before and after worth enduring.
Because in the end, it was always about my Mama, and never about me.
One of the things that has become increasingly obvious in our society – and it seems to have been underwritten by the ubiquity of social media – is an almost total absence of civility among the human race.
We have, it seems, cast off all restraints that might have led us to be gentle, kind, compassionate, empathetic, sympathetic, polite, respectful, and courteous, and we’ve become brutishly uncivil in our words, our behavior, and our actions toward each other.Continue reading →