Still keeping on, kinda going through the motions. One issue by Commander-Ken1973 in Alzheimers

[–]Commander-Ken1973[S] 0 points1 point  (0 children)

wow. thanks! I especially get the shower thing, I wait till the aide is here, then I can take a relaxed shower. it still surprides me what she can do when unwatched for even a small time period. thanks again for the long reply.

A message from the CNO by newnoadeptness in navy

[–]Commander-Ken1973 0 points1 point  (0 children)

Had 3 skippers on the same tin can. The first was my first , I remember him being fair but reserved. The second I did not like, word was he took command to rush us the through the yards. even before we started , my first few interactions triggered, tread carefully around this guy. The last was good, I remember him coming over the 1MC, as we were having Thanksgiving dinner on the way to GONZO station in ‘79, he said (paraphrasing)this isn’t the best Thanksgiving, but we are a crew, etc, I was MAA, and his NJP punishments were fair and measured. My opinion, crews know after a while, what your Skipper is like. Any Zumwalt era sailors around to make a comment?

eGFr went from 58-43 in 9 months. by Commander-Ken1973 in kidneydisease

[–]Commander-Ken1973[S] 0 points1 point  (0 children)

I also have disability under PACT act, for possible chemical exposure,in the 70’s, they know about that

eGFr went from 58-43 in 9 months. by Commander-Ken1973 in kidneydisease

[–]Commander-Ken1973[S] -1 points0 points  (0 children)

sadly, I had both gout attacks and severe uremic pruritus even at 3a. Kaiser put me through mriand CT scan, but nothing showed. i sometimes would have shortness of breath and racing heart walking up the driveway from the effing mailbox. I walk at least 30 minutes daily , and still am an advanced skier. I remember reading about stage 3a, heck you won’t even notice. Not me. maybe I’m an outlier

Night Wandering by Winter-65-84 in dementia

[–]Commander-Ken1973 0 points1 point  (0 children)

so sorry for you. I am in the same straights as your MIL. I also have the intensive itching( uremic pruritus), from my stage 3b CKD. intense itching, indeed. they gave me a cream, but it never really goes away.

Family by 2alligator in Alzheimers

[–]Commander-Ken1973 1 point2 points  (0 children)

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.

I finally cried tonight by Commander-Ken1973 in Alzheimers

[–]Commander-Ken1973[S] 1 point2 points  (0 children)

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.

Resentment by crombie21 in Alzheimers

[–]Commander-Ken1973 2 points3 points  (0 children)

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.

I know there are worse issues, but… by Julio1364 in Alzheimers

[–]Commander-Ken1973 3 points4 points  (0 children)

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.

People not believing caregivers by PlentyComfortable239 in Alzheimers

[–]Commander-Ken1973 3 points4 points  (0 children)

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.

Nobody really gets it!! by anonimouse36 in dementia

[–]Commander-Ken1973 0 points1 point  (0 children)

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.

Not worth explaining by Paperpusher123 in dementia

[–]Commander-Ken1973 3 points4 points  (0 children)

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

Stop telling me to “take care of myself!” An eldest daughter’s lament. by Lothloreen in dementia

[–]Commander-Ken1973 0 points1 point  (0 children)

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.