Everyone Needs to Read This and Understand

Been seeing the below copied text pop up on Facebook several times lately. You really have no idea until you go through it. At first, you think nothing of it because everyone asks the same question twice sometimes. Then, you think they might be faking it for attention or for laughs. When the person starts getting lost while driving or the same question gets asked 5 times in a row in 5 minutes, you know something is wrong. You try to tell yourself it will get better, but it doesn’t. The regression and memory gaps continue to get worse until one day they don’t recognize you or remember your name. They lose the ability to have even the most basic conversation or take care of simple bodily functions. Hygiene becomes a huge struggle. You will clean up excrement in strange places. Then, one day, getting them out of bed is no longer possible. When they stop eating and drinking, the end is close.

Alzheimer’s and Dementia are terminal illnesses which qualify you for hospice care covered under Medicare. Involve them as early as you possibly can. They can’t do everything, but what they can do will feel like a Godsend.

“It’s called the long goodbye. Rapidly shrinking brain is how a doctor described it. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are and become less themselves. Patients can eventually become bedridden, unable to move & unable to eat or drink or talk to their loved ones. There will be people who will scroll by this message because Dementia or Alzheimer's has not touched them. They may not know what it's like to have a loved one who has fought or is fighting a battle against Dementia or Alzheimer's.

In an effort to raise awareness of this cruel disease, I would love to see this on your timeline, too.

”

To clarify, the top two paragraphs are mine responding to the bottom paragraph in quotation marks which I have been seeing pop up on FB.

Rest In Peace Oma

As the title suggests, The Queen Mum, Oma, passed away peacefully in her sleep early Sunday morning sometime between 3:30 AM and 9:00AM. She was 77.

Friday night had been a difficult night for her. Fortunately, hospice had sent over Sir Morphine and his squire Lorazepam to help Oma's pain and anxiety. I spent a sleepless night tweaking the dosages from the recommended starting point suggested by hospice until finding the right combination that made her comfortable.

After finally getting to sleep at about 6:30AM Saturday morning, I had no intentions of getting out of bed unless there was a winning lottery ticket or Ed McMahon involved (you younger kids will have to look up the Ed McMahon reference to understand why that's amusing to me). At roughly 1:30PM, there was a banging on the door. The Queen hinted that I should be a dear and find out who was rudely disturbing our slumber on a Saturday afternoon.

I stumbled through the house bleary eyed with my hair sticking out in all directions. I peered through the peep hole in the door to see the blurry shape of a vaguely male figure in a white shirt and tie. Since I had left my glasses on my nightstand, that was as good as it was going to get ID wise without opening the door. I took a risk that I wasn't about to get preached too before having been caffeinated and, hoping Ed had finally brought that huge check from Publisher's Clearing House, unlocked the door. I figured the risk of a well dressed home invasion was pretty slim.

Turns out it was a long time friend of my wife's family and his daughters coming to visit Oma at my brother-in-law's suggestion. So much for sleeping in. I woke up The Queen. Opa was in the bathroom taking care of his necessary business which takes a fair bit of time as he has to catheter and generally ends with him walking through the house butt naked back to his bedroom. Rather than scar non-family members for life, I gave him a heads up that we had guests and brought him his clothes so that he could exit the powder room somewhat decently attired.

The rest of the day Saturday was spent entertaining as my brother-in-law, his wife and my niece arrived around 3:00 and were later joined by another family friend. Oma had a pretty good day overall with the help of The Queen and Sir Morphine. The Queen had nice music playing in her room, a breeze was blowing in throw the window, and she was surrounded by people who loved her. In hindsight, it is pretty apparent that she slipped into her final coma sometime during the afternoon/evening.

I went to bed around 3:30AM Sunday morning after a final check in on Oma at which time she was still breathing. The Queen and I chatted for a bit about how much longer this would go on. I told The Queen I felt the end was very close. She asked me what made me say that to which I replied it was just a feeling based on what the nurses had said and watching Oma over the last several days. I had no idea how right I was. The Queen tried to sleep but reports tossing and turning with no real sleep. She checked Oma a few more times also finding her still breathing. Eventually, The Queen was able to fall asleep shortly before sun up.

It was 9:08AM Sunday morning when Opa woke us up completely distraught saying that Oma was dead. The Queen and I jumped up and went to their bedroom. Sure enough, Oma was gone. I called Hospice, and the on call nurse arrived within 45 minutes to take care of the final details of pronouncing her death, calling the funeral home, arranging pick up of the medical equiment, etc. The funeral home arrived within an hour of being called taking Oma for her final car ride.

So, the grieving process has begun. The Queen is handling things much better than I expected. Opa is handling things much harder than I expected. I suppose that is understandable as he didn't exit denial mode regarding her condition until about 2 weeks before Oma died. It remains to be seen whether he can come to terms with his life without Oma or if he will give up and follow her.

That is all for now. I will share some more details about the woman who was Oma in another post. 

Oma - December 1942 to  March 2020

Where's Daddy Hawk Been?

Inquiring minds, or at least Cederq, expressed some mild concern that we here at Preachers and Horse Thieves had fled the coop for the dark side and forgot to turn off the lights or leave a forwarding address. Such is not the case. 

Although, he mentioned something about cookies AND pie...might have to investigate that a little further.

Life, as usual, has stampeded through my free time and taken what little extra bandwidth I had set aside for blogging for a glorious white water rafting adventure down the toilet bowl. 

The main reason behind all of this has been the rapid decline of The Queen's mum, Oma. As reported in previous updates, Oma has been developing a case of Alzheimer's for quite some time now. She was formally diagnosed in September with "Stage 6 Dementia/Alzheimer's". At that time, she was still able to walk relatively well, unassisted for normal distances to/from parking lots, etc. She would still feed herself for the most part. 

Now...sheesh. Wow. You would not recognize her from September to now. She is homebound now, unable to stand or walk without assistance, and she is forgetting to swallow her food. The OMA we knew is gone. In late December, I burned several days of vacation time to get home health aides set up, discuss funeral arrangements and finally get her approved for hospice. The hospice folks have been wonderful. They even came to the house on New Year's Day to do the formal assessment so that I wouldn't have to take another day off from work. 

There is a lot of internal family drama that would be very cathartic to write about but which would probably bore you to tears and only wind up widening the rift into a gulf. As I told The Queen the other day, I will stand before God on Judgment Day to answer for my mistakes. How I've handled the care of her parents won't be one of them. Others in the family will have some answering to do. That's  all that needs to be said about that in this forum. 

So, I haven't gone anywhere. I promise I will give this blog a proper shut down if it ever comes to that. Due to higher priorities, posting will remain light with scattered bursts of my usual drivel and humor when possible as The Queen and I are handling the majority of the care giving with hospice assistance. 

Living With Alzheimer's

As I mentioned not too long ago, Oma (The Queen's Mum) is afflicted with what appears to be Alzheimer's Disease. I say "appears to be" as Oma has never been formally evaluated or diagnosed because she and Opa have a serious case of avoiding the medical community. Said avoidance is partially rooted in their religious beliefs that God is the source of all healing, and their faith that God will heal them in His time (which may or may not be in their physical lifetime). Some of said avoidance comes from Opa's  pathological, and nearly obsessive/compulsive, germaphobia (which is a story in and of itself for another time). The remaining reasons for their avoidance is a mix of distrust of  medical doctors, too much internet, major procrastination and a few other things to boot.

Having said that, Oma exhibits many telltale Alzheimer's symptoms. So, some may quibble and say she has dementia instead of Alzheimer's. To them, I say "po-tay-to" / "po-tah-to". The end result is the same: Oma is nuttier than the backyard squirrels.

So, what's it like to live with an Alzheimer's person?

Strange is probably the best description. Frequently illogical and frustrating. Occasionally terrifying or amusing. Always sad, and generally unpredictable.

In a way, it is like living with a young child. You are constantly watchful for dangerous behavior, correcting, guiding, etc. The unfortunate part is that, unlike a small child who is constantly learning and developing, the Alzheimer's afflictee is incapable of remembering new information and begins to loose their grasp on long established behaviors.

Case on point: hygiene. You, me and pretty much 99% of the population older than the age of 3 or 4 has a pretty solid grasp on what's involved with going to the bathroom. Take care of business, wipe, tidy/clean up as necessary, flush the toilet, wash your hands with soap, dry your hands and go about your day. For the Alzheimer's person, each step in the process is an opportunity for disaster. We pretty much have to be eternally vigilant to insure that each step is properly taken care of in the proper order. We frequently have to remind Oma of one or more steps in the process. It goes something like this:

Us: Oma, you need to wash your hands.

Oma: I just did.

Us: No, you didn't.

Oma: Yes, I did.

Us: Oma, we were standing right here. You haven't washed your hands yet.

Oma: What do you mean?

Us: Oma, please just wash your hands again.

Oma: Okay, but this is crazy.

Us: Use soap Oma.

Oma: What's soap?

Us: [praying silently for patience]

She can, and has, forgotten one or more steps in the process on multiple occasions, and it's akin to Russian Roulette as to which step will be the odd man out on any given day.

Getting her to shower is a challenge. She can sit there smelling riper than a summertime outhouse and adamantly insist that she just took a shower when you suggest it's time to bathe. Ditto for brushing her teeth.

I mentioned in a previous post about Sundowner Syndrome which is a joyful aspect of Alzheimer's. That's still hanging around. Her anxiety really increases an hour or two after sunset for some reason. Tonight was especially bad. We were out for dinner at a crowded restaurant, and she kept wanting to get up from the table to go looking for Opa (who was at home). Unfortunately, her anxiety was so overwhelming, she couldn't even form a coherent sentence to communicate what she wanted. She just kept pointing towards the door and saying "Can we...um...over there....him..." or similar things.

One rather annoying trait that has manifested itself is an apparent compulsion to whistle constantly. Everyday. It's the same few songs. Over and over and over again. It's like she has a very short playlist stuck in her head, and feels the need to whistle the Blue Danube Waltz, Take Me Out To The Ballgame, or a handful of other songs at any given moment.  The mood usually strikes when she gets bored (which is often) or when anyone else in the house happens to whistle for any reason (it's like speaking the devil's name and he will come). We try to distract her with reading magazines (which she chooses to read out loud for some reason) or old TV shows. The Andy Griffith Show has been on nightly reruns here at the house for the last 3 months or so ever since Opa discovered the complete series on Netflix.

There is a set of related behaviors that I find really odd and particularly frustrating. She will get into anything and everything, move things around or take them, and then hide things. There was almost a knockdown fight between The Queen and Oma over her raiding M&M's piggy bank. The Queen discovered the situation just in time to see Oma stuffing M&M's stash of small bills into her pants. Oma steadfastly denied taking anything even when confronted with the evidence. We have to keep an eye on Oma's every move because she is constantly taking things and putting them where they don't belong or stashing them. M&M's stuffed animals are frequently moved around the house. If Oma doesn't finish her dinner, she will stash her leftovers in the cubbyhole of the headboard on her side of  the bed (which, interestingly, is also her chosen place to stash dirty underwear) or in the oven.

Oma can get downright creepy sometimes. I will occasional banish myself to the couch or M&M's bed (when M&M has jumped into our bed) after The Queen has poked me for the 5TH or 6TH time that evening for the unpardonable sin of snoring and keeping her awake. I have been awakened a couple of times by Oma fumbling her way around the house in the dark on her way to or from the bathroom for a late night potty break. If I'm really lucky, Oma is wearing clothes when this happens.

She has also lost any concept of personal space and tends to be a bit grabby. She's got a pretty firm grip too.

So far, we haven't had to worry about Oma wandering off, but we also don't let her go outside unattended. We also have had to prevent her from just answering a door knock without checking who is there.

Not everything she does is a negative. She remains very thoughtful in some ways. When we bring her a plate of food, she always offers to share it with whoever is nearby. "You want some of this?" We always remind her that that's her food, and that everyone else has their own food. She is still a happy person overall when she's not frustrated with us over asking her to take a shower or wash her hands. On the plus side, she no longer tries to convince complete strangers that they are Jewish or have Jewish ancestry (which was actually pretty funny...especially if the strangers were people of color).

It saddens me that her memory has more holes than Swiss cheese. She does not remember M&M is her granddaughter and doesn't even know her name anymore. She sometimes forgets M&M is a girl and asks where that "little boy" went. Most days she doesn't even remember her own name. She still knows that Opa is her husband, but I don't think she remembers his name either. She doesn't remember who her kids are.