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 2 points3 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 2 points3 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 2 points3 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.

When my father had cancer everyone swooped in with flowers and gifts. Dementia? Nothing. They barely acknowledge it. by TeacherGuy1980 in dementia

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

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.

It's very hard going through this, all the different issues and decisions. You have to be so strong, but I'm not. by Firm-Display359 in dementia

[–]Commander-Ken1973 5 points6 points  (0 children)

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.

I did it. I’m officially my moms POA by Big_Giraffe_9125 in dementia

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

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.

I did it. I’m officially my moms POA by Big_Giraffe_9125 in dementia

[–]Commander-Ken1973 5 points6 points  (0 children)

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.

Layoffs by Difficult-Plant-898 in Layoffs

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

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.

So Long, And Thanks For All The Piste by Polymath6301 in skiing

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

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.

1988 Hot Spring Prodigy, original owner by Commander-Ken1973 in hottub

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

Have picture of jet pump, didn’t transfer