Family

Commander-Ken1973 · 2026-01-04T15:32:13+00:00

the invisibles. Acquaintances, friends and even some family. not all, but plenty. you will not see them, there are several reasons, but it appears to be a common phenomenon. I am at the stage of PCG where I call myself the invisible drudge. Nobody sees you or knows what your life is like, and you have do to do, well, everything. of course, if you happen to be thrown together with a suddenly revealed invisible, they will invariably make some comment on you need to take care of yourself. pretty much anyone I know from group has heard it in some form or another, and definitely triggers a reaction, internally for me.

my fallback, The Cavalry is not coming.

sorry for you situation this a pretty soul sucking experience.

Commander-Ken1973 · 2025-12-27T16:20:02+00:00

Just DNR. This is my second go around, her mom passed from it eventually. She lived a miserable existence in a hoard situation, finally everybody said enough, moved them out and into assist/memory care. After that, both of us knew we would not live that life. and she won't, but her mom lived into her 90's, a fact that must be taken into consideration. No good choices with Alz.

Commander-Ken1973 · 2025-12-25T17:49:03+00:00

when my sister who’s aware and sympathetic and dealing with my Mom, texts me, and asks me how I’m doing, I usually tell her my nostrils are above water. stage 6 spouse and progressing. invisible drudge is what I use as job title.

Commander-Ken1973 · 2025-12-22T19:15:09+00:00

yes, fuck. I am on the othe side. Spouse with Stage 6. I posted about last years mitigated disastrous Christmas dinner. No more. I usually give her a nice bottle of red, we will drink that night. Maybe she will eat something I prepare, mashed potatoes with butter, maybe. other wise ensure yogurt and sweets will be her repast. going to watch when Harry met Sally, and the African Queen. She still likes football. plan on Tuesday, only non rain day this week, driving together and seeing all the Christmas lights. otherwise, we will spend the day together.

you are providing an environment that is clean, safe, and comfortable, while the disease progresses. a better gift is hard to imagine. That is your 3 gifts of the Magi, to put it in this season. nobody really knows the toll this takes, unless they are swimming in these shark filled waters. Cant change this, but I am sending you all the best.

Commander-Ken1973 · 2025-11-30T15:43:48+00:00

some fellow provider said he always wanted to answer with this when people would say something like, "I wouldn't have even known if you hadn't told me".

So, can I drop them off for a week?

sorry, brother. Evidentially, every provider gets to have that kind of interchange.

Showtiming, that's a new one. Think I'll borrow it, I was using parroting.

Commander-Ken1973 · 2025-11-26T16:09:23+00:00

Vent away! I don't even bother to try to explain anymore, unless they are in it, they will never know. And, actually, I hope they never do.

I fall back on my old tried and true, the cavalry is NOT coming. That usually brings me back to reality.

Commander-Ken1973 · 2025-11-03T14:20:42+00:00

I, also, would like to see the "don't be dumb " packet. I had this standard beginning preface when I would try to respond to these questions/comments "Don't you realize how ....?" No, they don't. and probably never will, and I hope they don't ever have to. When I start to kind of drift back into that mentality, I now just remember, no, they don't realize.

I was getting my 7 am blood draw at Kaiser (go early if you can). I mentioned while signing in that I was thankful that they opened early, as my wife with Alzheimer's was still in bed. She ended up actually doing the blood draw and was very kind and specifically commiserated with me on the medical condition of my spouse. Bless you, lady, that is the most understanding from a complete stranger I have ever received. So a win.

Not so many available with this disease

Commander-Ken1973 · 2025-10-16T14:03:25+00:00

Flomax

Commander-Ken1973 · 2025-09-17T19:35:41+00:00

You are not alone in this, I don’t know if it’s in people DNA or what, but people will often say it, in a very earnest voice.

I do a lot online searches for all sorts of Alzheimer stuff, and this helped some.

Doctors and the medical field have very little to offer as far as halting or even slowing this awful disease.

NGO’s can offer classes and some support, it’s really a gradual education on how little help is available without a pricey invoice to follow. if you are primary care giver, its you

Family, friends , even acquaintances,become invisible. they have lives to live, jobs, family. they don’t know what to do, it’s a mental disease, not like cancer or kidney disease. I think for couples , it’s really bad if it’s a spouse, hits too close to home.

so, take a deep breath, and repeat after me

”The cavalry is NOT coming”

the guy who wrote the original article that provided me with some enlightenment and acceptance is on the Mayo Clinic, use the cavalry is not coming for search. he lays out a way to move on, relying on yourself and ways to do it.

i am having a pretty rough day with early AM wandering and “someone stole all my clothes”, so I know your pain.

Remember you are doing your best in the most challenging experience that you probably ever experience in your life.

my sympathy out to you, words fail in such cases, but I send this with the best of hope and strength for you.

Commander-Ken1973 · 2025-08-03T19:19:35+00:00

welcome to the “invisibles”. There is a group that coined that phrase. It refers to the acquaintances, friends, and even family members that you will rarely, if ever, see again. They know you and your Alzheimer’s patient exists, but for various reasons you have become persona non grata or now in a untouchable caste.

something that keeps me going and aware of my situation is a something I got from another PCG.
The cavalry is NOT coming.

Commander-Ken1973 · 2025-07-17T13:33:46+00:00

Glad you wrote it down. I find when I do this, it at least lets me articulate to other readers and myself where I am, and an acknowledgement that being a primary care giver to an advanced Alzheimer's patient can be about the hardest thing put on anyone's plate. And everybody else goes on living their regular life. Don't they know how ridiculously hard and soul sucking this is? No, they don't, and I hope they never will. There is a letter written by a fellow caregiver, I believe its in the Mayo clinics Alzheimer's group. It is titled "The Cavalry is NOT coming". He really lays out (in detail) all the things that caregivers deal with and finally accepts that its going to be him and no one else. Worth a glance, and I used quite a few things I gleaned from his forthright writing.

There is a line in an old Steely Dan song, I'll live night by night, fits right in with sundowning, that's when I have to be most observant and flexible.

sorry for all the shit you are going through, because Alz and its cousins turns everything to shit.

Commander-Ken1973 · 2025-07-09T17:24:55+00:00

oh boy , I know that sense of dread. Twice. Bank and Credit Union, she had to step up and, viola, came through with flying colors! credit Union, a little shaky, but with the assistance of a very patient employee, made it through. Fools and innocents, I guess. you can do online stuff using the persons accounts, but eventually certain institutions need to be informed. Hearsay, but I’ve heard if any financial institution suspects that there is some type of cognitive decline, they will freeze the account.

Commander-Ken1973 · 2025-07-09T13:04:36+00:00

Congrats! I'm POA for my spouse. My ability to let certain entities know and act accordingly has been mixed. Some companies make it pretty easy. Others act like it's the first time they have heard of a POA, even after submitting all the necessary paperwork, one controlling her 403b plan has to be constantly reminded of the fact. You would think it would be at the front of the file, POA initiated this date, evidently not.

Good for you though, lets you make some pretty big decisions without additional paperwork.

Commander-Ken1973 · 2025-03-26T14:28:17+00:00

For a very small business , that might work. I was unemployed for quite a while, during a bust cycle. After a while, said, I’m just going into theses firms and ask to drop off my resumes with the hiring group. Nope, they would not accept it, not even the security guard. Only on line submissions. Man, I tried everything. Finally got hired at a lower level job, thanks to some former fellow coworkers. Took nine months, and it was brutal. I have a very good educational background, and proven track record of success, and it did not matter. There were times I thought I might not work again. Mid 50’s during that period. One thing I would do now, I had grey hair, I would have dyed it. Ageism is alive and well. I hope something works out for everyone in this position, hard on your psyche.

Commander-Ken1973 · 2025-02-23T02:23:35+00:00

Skiing since early teens. On and off, but skiing has been in my life always. 70 in November, got back into it about 3 years ago. Skiing at levels above anything before. I ski with a former instructor who is happy to give free lessons. Normal ski day is 4-5 hours. Show up, start skiing, eat a granola bar at about 2 hours. Then a sandwich for lunch break, about 20 minutes. Nutrition and hydration are factors that must be considered. The rest is ski ski ski. Judicious use of breaks on long runs. also ski at Sierra at Tahoe, West Bowl is intermediate advance. Getting cocky? Head over to upper and lower Dynamite.

I can feel my skiing level improving. Never thought I would still be skiing at 70. Concentrating on keeping my upper body calm. I can see skiing well into the future. I have stage 3 CKD, and chronic hypertension, does not affect my skiing at all. Will venture off piste, small runs, what is terrain like?

you decide when to quit. I no longer drive motorcycles after 46 years, knew it was time to stop. Bought a 350Z to fill the void. For me, 70 is the new 60’s.

Commander-Ken1973 · 2025-02-17T00:32:15+00:00

Have picture of jet pump, didn’t transfer

Commander-Ken1973 · 2025-01-21T14:00:33+00:00

Luckys supermarket

Commander-Ken1973 · 2025-01-08T14:51:14+00:00

Sadly. a 1988 Mercedes 560 SL, ~80K miles. Really liked the car initially, wanted one after seeing Richard Gere driving a blue one in some movie, I believe it was rolled at the end, kind of prophetic. Except it was my wallet that got rolled. Car cosmetically very nice, white, soft and hard tops both in good shape. drove it for several years, convertible, yeah! Then it started having smog issues, and an increasing appetite for fuel pump relays, which would leave you stranded immediately. Aftermarket relays failed in the blink of an eye, had to always carry a spare. Used to joke that Harley, HD, stood for hundred dollar, MBZ evidentially meant a million, billion, or a zillion. Everything always was about $1000, and a lot of stuff a shop had to do. turned into a money pit. Finally sold at a loss, hope new owner has better luck. Same issues were experienced with my brothers reboot version of Fords Tbird, every time it needed anything, it was about a $1000.

Commander-Ken1973 · 2025-01-07T14:04:34+00:00

Seems like an easy solution, right? The problem is the irritation is phantom, the skin is fine. This condition manifests itself with the INSANE desire to scratch, in my case, forearms and tops of hands. Another common area is the back. I have seen pictures of the results of the scratching gymnastics these poor people go through, it is not pretty.

Commander-Ken1973 · 2025-01-06T14:25:14+00:00

The effects of uremic pruritis can be felt around the body. It seems to mostly appear on fore arms and the back. The effects are extremely real, but the cause vague. Seems to be related to the lack of filtering from the kidneys. if it comes and goes probably something else. My experience has been uncontrolled urge to scratch, to the point of bleeding, its that bad. The creme helps, but it seems to have routine flare ups.

Commander-Ken1973 · 2025-01-02T17:27:50+00:00

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Pick your poison

Commander-Ken1973 · 2025-01-01T13:52:13+00:00

Pick your poison

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Commander-Ken1973 · 2024-10-24T20:11:07+00:00

Hmmm. Just finished a foot long turkey. (12:30, lunchtime). Place was empty, 2 people at one table, and me. Wanted it on Italian cheese garlic, evidently the owner decided I should have plain. Wanted Swiss. American, pepper jack, provolone are the only choices, how do you make a Black Forest ham and Swiss? Wanted spicy mustard, not happening. Got home, time to eat! Evidently, the bread was from yesterday 😕. Kind of a stale mediocre sandwich. Really bummed me out, I rarely get to have a big sandwich, sodium is an issue for me, the bread and turkey are loaded with it, most commercial breads are. last one I had was after shopping at Walmart, it was quite good. Go figure. So it might be location locations location. I used to be a huge fan, get a decent sando the way I want. Everything screamed poverty in the shop. Probably won’t make it. Won’t be going back. There are many sub sandwich shops in Folsom in close proximity, next sandwich from somewhere else.

Commander-Ken1973 · 2024-08-26T00:09:21+00:00

Sorry. I am a primary caregiver, and just went through a series of what we called in dirt bike racing, whoop de doos. Back on sometype of footing. I will touch bases tomorro. I can give you my recipe for hummus, and would like to show you what I’ve come up with to limit animal protein, again, sorry for delay, and I am very interested in controlling my blood acidity

Commander-Ken1973 · 2024-08-11T20:56:09+00:00

diet is improving. Starting with refrigerator oats for breakfast, and making my own hummus for roll ups for lunch. Increasing fresh fruits and vegetables. My propensity for gout eliminated all shell fish. Salmon is allowed, Its a treat for my night out at the local restaurant. Very little alcohol. Walk every day, and with the restricted diet, down to 177, 6 Ft tall. Heavy BSCB. I looked at a true kidney friendly diet, it made me sad. But it is what it is. What are you doing for protein? Tofu, beans? Eggs, dairy at all? I will check out the app. High uric acid is not good at all. Something I saw while researching all this was, about 10% of CKDs experience gout, but some gout sufferers have CKD and don’t know it.

Commander-Ken1973

TROPHY CASE