GUY’S GOTTA TALK ABOUT…Alzheimer’s #28: Alzheimer’s In The Time Of COVID-19

Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

When the governor of Minnesota, the state I live in, announced that Sheltering-In-Place was going to be mandatory, I had a sudden image of what the COVID-19 pandemic would be like for Mom (who had age-related dementia) and Dad (diagnosed Alzheimer's in 2014).

It wasn’t pretty.

All long term care facilities have closed their doors, allowing employees only to enter and leave. Mom and Dad lived in one moving in 2015, starting in assisted living. They could come and go as they chose, but as Mom’s health deteriorated, she stayed in more than she went out. Finally, she’d broken down so far that we convinced them both to move into Memory Care – because they provided Hospice Care and there was a good chance she was going to need it.

She died in 2016; dad followed three years later.

Toward both of their ends, there was a lot of delusion, a lot of imagination, a lot of confusion that only increased until they each went to meet their maker. That confusion was about normal, everyday things – meals, times, years, seasons, objects…

When I think of trying to explain the COVID-19 global pandemic to them, it gives me a headache. Especially when with Dad, I would be bound to explain it every single day – like how to work his TV or his phone or his clock...or that Mom had died weeks/months/years earlier – and he would forget twenty minutes later and call to tell me his TV wasn’t working or he’d lost his keys or his wallet.

How are families dealing with it?

“‘He hears the news, knows that routines have changed, sees that kids and grandkids are home from school or lost a job, but ‘coronavirus’ and ‘COVID-19’ don’t register.’ It can be heartbreaking and difficult to explain this pandemic to your loved ones and know what to do.”

And what happens when the facility shuts down to visitors? I can’t imagine what I would have done if I couldn’t have gone to see Dad two to seven times a week! (I would have drawn on the assurance that my siblings would take care of him. He was fine when I went to South Korea for four weeks to see my son, daughter-in-law, and grandkids. Dad had been stationed in Japan during the Korean Conflict, so he had an anchor to place me as “away”.) That might have helped during this time as well – explain that I’ll be away and will call as I can…

“It’s important to communicate changes that may cause anxiety or upset a person living with dementia. If you are unable to visit, let the person know. Set up a plan and create a new habit. This will help them to grow accustomed to new changes. Reassure them that you will keep in touch in other ways. The reasons why you can’t visit will be secondary and can be explained simply if needed.”

And the whole “Wash your hands; wash your hands; wash your hands” thing?

“Walk through the process with them, saying each step at a time…Use your hands to model what needs to be done and use a soothing tone…Since frequent handwashing can dry out skin, keep a moisturizer on hand, especially because older loved ones may already have delicate and fragile skin…Accept that people will touch their faces and just do the best you can with distractions.”

All in all, anyone reading this whose parents have Alzheimer’s or other dementias, you have my deepest sympathy. If you need to talk, you can leave a message. I'd be happy to be a shoulder to cry on...

Resource: https://parade.com/1015499/carolyncrist/dementia-alzheimers-coronavirus/

Image:  https://upload.inkspire.org/uploads%2F1503370874800-Alzheimer-disease-patients.jpg

ENCORE #130! – Reconstruction Era! – Part 8

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in November of 2013.

“It appears that the next event is breast reconstruction!”

It’s strange because there’s not much to add here...

After the last surgery, life has been calm: we’re managing lymphedema (my wife does the sleeve, wrapping, and watching carefully in order to NOT injure the arm or hand – I do nightly massage to move fluid away from the arm and back and push it into the groin-area lymph nodes to be recirculated); she is taking care of the skin over the new implants; she is contemplating the final stages of reconstruction which are cosmetic – adding a “nipple” to each boob and getting an aureole tattooed on each.

As to that tattooing – the initial mention of it set me off into a spate of giggles.

Not intentionally, mind you, but as my daughter has a tattoo on her arm and when she was younger, she asked if I’d accompany her to a certified tattoo parlor in an upscale neighborhood of the city we live in (where I felt like a forklift driver in a Williams-Sonoma Store) – I naturally thought of her and my daughter going

into this establishment and inquiring after an aureole tattoo...

So, I’d best check the REALITY of this out. Here. Where I can apologize in public for my ridiculous vision.

Once the surgery to place the implants heals, there are two possible final steps.

The site below has this to say, “Chances are, you have probably spent the last few months getting used to nipple-less or ‘Barbie’ breasts.” (Note: I was glad to see that I’m not the only one approaching this with a teeny bit of humor…)

The first choice here is of course, even whether to have the reconstruction of the nipple done at all. There’s no NEED to do it, but “For many women, this is the final step after a long journey.”

The second choice involves no surgery at all, but simply tattooing a realistic APPEARING nipple in place of a skin “tuck”. Tattoo artists are very proud of their work and finding an artist typically begins with your hospital. However, there are individuals who work out of their normal tattoo studios (http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html) as well as working through hospitals and clinics.

The third choice is to have a surgeon make a pair of cuts into the skin surrounding the central spot then stitch them together. Once the cuts heal, the end result is a mound of living tissue, what is referred to as a “nipple mound”.

Other methods are discussed below including skin grafts and a fat (or dermis) transplant or using the same substance used to create the implant supports to create a natural-looking nipple.

If the second or third choice is taken, an aureole can be created either from other skin grafts or using a tattoo artist to create the effect of the darker skin around the nipple.

This is the next step in the process and I’ll let you know the effects of the final decision!

Resource: http://www.breastreconstruction.org/SecondaryProcedures/NippleAreolaTattoo.html

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

BREAST CANCER RESEARCH RIGHT NOW! #72: No Drop in 20 Years – Patient Mortality After Metastasis of BC…THAT MAY CHANGE!

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

Every month, I’ll be highlighting breast cancer research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Working on a way to attack metastatic breast cancer...

While this time it is not a family friend, it IS our foster daughter’s future mother-in-law. Diagnosed with breast cancer a few days ago, we do not know any details at this time. We only know one thing: we HATE breast cancer.

The wife of another friend of ours who began his walk with his wife’s BC diagnosis a year before we did, has metastatic bone cancer.

I so hate this disease, I seriously considered buying and wearing an “F*** Cancer” T-shirt to work (I’m a near-inner city high school counselor, so I’m pretty sure no one would have noticed…) and now it’s reared its ugly face again.

At any rate, recent studies have suggested that “when the protein bone morphogenetic protein-4 (BMP4) is switched off, breast cancer can become more aggressive. BMP4 is active during fetal development and is maintained during adulthood in some healthy organs, including the breast.”

So, what’s that mean?

“At its core, this study has demonstrated that high levels of the BMP4 protein in breast cancer patients is associated with better outcome, linked to a reduction in metastatic breast cancer…”

As it notes above, BMP4 stands for Bone Morphogenetic Protein #4. “Great. That’s so helpful! (not…)” What the thing is, is a protein (like muscles, protein bars, and hamburgers). That’s not the most important part, though. What it DOES is help to direct “bone and cartilage development…[in] tooth and limb…and [repair] fractures… starts up endochondral bone [cartilage (you know, nose, ears, “torn rotator cuff”)] formation in humans [and is] involved in muscle development, bone mineralization, and ureteric bud (to eventually become those tubes that kidney stones slide down before you pee them out…) development.”

According to the research, this protein pretty much disappears when breast cancer starts. Why? Because it’s stored in breast tissue as well as the bladder (in the actual organ, not in the urine!), prostate, colon, ovaries, and stomach. Smaller amounts are stored in the adrenal glands, duodenum, fat, gall bladder, lungs, and small intestines.

The idea of the study was to find a way to bring the BMP4 production back online after late-stage breast cancer – or to keep it active when breast cancer is first discovered. In experiments, replacing BMP4 shut down the ability of breast cancer to kick up the invasion of other organs like the lymph nodes, bones, lungs, liver, and the brain.

This is nowhere near ready to test for one main problem: when BMP4 gets into the blood…it survives about 15 minutes. Then it’s gone. Current research is to find something ELSE that mimics BMP4 that WON’T vanish in a quarter of an hour.

I’ll keep you posted – and you can follow the research yourselves using the links below.

Resources: https://www.sciencedaily.com/releases/2020/01/200117104742.htm, https://en.wikipedia.org/wiki/Bone_morphogenetic_protein_4, https://www.ncbi.nlm.nih.gov/gene/652, (For an amusing history of one of the “hidden” proteins of the Human body called Sonic Hedgehog…I’m not EVEN kidding! It’s what happens when video game kids grow into research scientists: https://en.wikipedia.org/wiki/Sonic_hedgehog)

Image: https://ih0.redbubble.net/image.633576815.4412/flat,550x550,075,f.u2.jpg

ENCORE #129! – The Reconstruction Era -- Part 7

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in October of 2013.

“It appears that the next event is breast reconstruction!”

After the leaky expander (http://breastcancerreaper.blogspot.com/2013/09/round-two-random-thoughts-on-breast.html), the doctor decided that she would move up the surgery to replace the expanders with gel implants.

That will be on Wednesday, four days hence.

Unlike the first surgery which was an horrendous, frightening, painful, and nightmarish experience; this seems much calmer. While still immensely painful for my wife, I feel no compulsion to gather forces around us in order to marshall support. My daughter and I will be there that day and will keep the world apprised of events, but it seems so…anticlimactic. My wife goes in for surgery in the morning, that night we’ll bring her home…

Calm has settled over the house after a bit of a tense morning and an afternoon of delay and waiting. Those are all “normal” things that go with regular surgeries of any kind whether expected or unexpected.

This one was expected, in fact, this one was the culmination of a long, dark night of my soul. Even as I write this, the doctor is on the phone talking with my wife. Both my wife and daughter have headaches from an afternoon spent in the hospital, but those are fading as the rest of the day progresses toward sunset…

The surgery itself was anticlimactic, as I said earlier. The initial incisions done for the double mastectomy (http://breastcancerreaper.blogspot.com/2011/04/observations-of-breast-cancer-husband.html) provided the entry into the skin over the chest cavity. The plastic surgeon placed hollow, plastic expanders underneath and added cartilage to act as supports for the saline or silicone implants. Over a period of four months, saline injections stretched the skin and made it grow.

Today the expanders were removed and the implants settled into their new homes. http://www.fda.gov/ucm/groups/fdagov-public/documents/image/ucm259884.jpg

While we were waiting, I shared with my daughter my perceptions of this day and the one two years and seven months ago. On that day, me, my son, daughter and wife were surrounded by friends and family; all were anxious, all were warm and caring, all were THERE for us. There was food, laughter, talk, walks, lots of hugs and lots and lots of phone calls.

There was also a lot of terror prowling inside of me. There was anger. There was loathing – both of self and disease. There were hours and hours and hours spent wondering what was next; what the end result would be; how much pain my wife would suffer over the coming days, months, and years. There was a specter over that day casting a shadow long and far ahead. We were going into a place where we knew nothing, could expect nothing, and could only tread with trembling limbs and faint hearts. The end of that day, we fell into bed exhausted, forced to leave my wife to the darkness of night, in the care of strangers, and with only the faint blip of a heart monitor for a companion.

Today, we were cavalier in our attendance on the surgery. The shadow was now behind us rather than before us and as rugged as the trip was, as full of unexpected pits and falls, as terrifying as it was…this day was nothing like that.

We laughed. Joked. Chatted with people online and on the phone. Marveled at technology. Chatted amiably with nurses and doctors alike. Contemplated Diet Cokes and lunches and supper…and all the things that were normal before cancer.

We have, I think, reached The New Normal and now we live there.

As we sat down to lunch while my wife underwent surgery and recovery, my daughter said, “I like this hospital a whole lot more than the other ones.”

I replied, “And we’ve seen way more than I ever wanted to see, too, haven’t we?”

We agreed and fell into a companionable silence, waiting and eating an (unintentional) abundance of deserts. Once we were done, we headed back to the waiting room. It seemed like moments and the doctor was out, telling us that my wife was in recovery and that she’d been able to…well, the intimate details are a bit TOO intimate, but suffice it to say that the end result was GOOD.

Truth to tell, if anyone had told me that the whole horror of breast cancer would have reached this point 32 months after that horrific day of the diagnosis, I would have been unable to believe it. Knowing full well that not all cancer diagnoses have this same ending and grieving that not everyone can experience this peace, I am here, waiting to listen if you need to talk, thankful for everyone who reads this blog, and willing to continue, because GUY’S GOTTA TALK – ABOUT BREAST CANCER…(and since then, Alzheimer’s as well.)

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

Encouragement (In Suffering, Pain, and Witnessing Both…) #10: What Could POSSIBLY Be Funny About Alzheimer’s???

The older I get, the more suffering and pain I’ve experienced; and the more of both I stand witness to. From my wife’s (and many, many of our friends and coworkers) battle against breast cancer; to my dad’s (and the parents of many of our friends and coworkers) process as he fades away as this complex disease breaks the connections between more and more memories, I have become not only frustrated with suffering, pain, and having to watch both, I have been witness to the suffering and pain among the students I serve as a school counselor. I have become angry and sometimes paralyzed. This is my attempt to lift myself from the occasional stifling grief that darkens my days…

OK, while looking for encouragement for people who are dealing with a parent or grandparent or a partner who’s been diagnosed or is showing signs of dementia or Alzheimer’s, I guess I was thinking of sober, considered wisdom.

I was NOT thinking about the humorous side of Alzheimer’s.

That there are people who CAN think this way is a testament to their ability to draw on a source of strength I was unable to with Dad’s Alzheimer’s descent.

With my wife and daughter in particular, we were able to draw strength from the humor of her struggle against breast cancer, joining others with what you could call “gallows humor” (definition: (aka, black humor) “a comic style that makes light of subject matter that is generally considered taboo, particularly subjects that are normally considered serious or painful to discuss.”

I was never able to find the “funny” side of Alzheimer’s. It was far too grim; too immediate for me. I dreaded walking into his room and have him ask the question, “Have you seen your mom?”

Or worse…

“I have to tell you some news,” he said one day.

“What’s wrong, Dad?” I asked, freezing at the door. He lived in the memory care unit of a large retirement community. What could have happened?

“It’s your mother,” he said, his voice dark and grave.

I rolled my eyes. My mother, his wife, had died two years earlier. His Alzheimer’s prevented him from recalling her death because it was too recent. I didn’t have to brace myself, so I started into his apartment. He said suddenly, “I think your mother left me for another man.”

That was a new one and because I’d been dealing with him for so long, I paused before I said, “Oh, she wanted me to tell you that she’s going shopping for the day with the OWLs.” They were a group of women my mom had known for decades. They had traveled together, gone to the wedding of their respective children together; they’d even gone to the funeral of one of the OWLs several months before Mom died.

Dad accepted that with relief, and we moved on. It wasn’t the last time he went through that, and I know to HIM, it was a real terror.

At any rate, it never occurred to me that we could laugh at the horrendous disease. The poster below was the one on the page that I linked below that made me laugh:

So, while laughter isn’t a medicine that cures Alzheimer’s, it’s definitely something to cozy up to and perhaps give yourself a brief moment of life!

Resources: https://quotesgram.com/funny-quotes-about-alzheimers/

Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg, https://cdn.quotesgram.com/img/86/25/665375939-e70.jpg