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Call me selfish..I know, but I am feeling dissed by my husband because his family tends to come first. Hubby is taking off the week of June 10th and his dad has already arranged 3 of those days for the two of them to go camping and fishing at MY childhood camping stomping grounds..I can't get him to take me there because the last time we went, I out fished hubby!! I am so torn between being furious and being grateful he is spending time with dad!!
excellent bobbie glad you got to see Diane and she is free....
hope your new local is perfect, swing by the gulf of Mexico, go through Panama canal, turn right head to Washington go in at the Mighty Columbia port around dams and head to Spokane I will meet you at the carousel and we can go to Tahiti ....
Just had a lovely visit from Diane and her beau and her friend. They are on their way somewhere and passed right by here so we got to hang out on the boat for a few minutes.
daizy: I looked into "lewy body" I don't think that is her type of dementia..She doesn't hallucinate at all, or any type of agitation, she is as sweet and co-operative as can be. She just cant do a darn thing for herself, she would lay in bed n her waste, starve to death before it would occur to ask for anything (but a hot cup o coffee) or get up (which she cant do alone anymore anyway)! Soooo......still doing some research and will need to talk to Nuero again. Right now I consider her decline to be very slow. IF I were to try to describe it thru my demented glasses i'd say: If when I took her on she was a 10, 8.5 ys later she is a 7 but an 8 before the fall (hip/shdr break) in Feb. I learned thru home health, thank goodness for them, that is normal the stress n pain of the injury does cause decline. I'm just glad we we given an option to not operate, the anesthesia would have been worse affect...anyway I should just make a "my story" to start my journal. that would be good to just help organize thoughts and tasks!
juju...when I was taking care of my mom. Her progression was so fast, I had the same talk with the Hospice nurse and Social worker. She was taking blood pressure meds, water pill, arthritic meds, extra potassium, iron and a multitude of vitamins. She was gagging and throwing up after trying to swallow all the meds. It was so hard to watch. This is when I started to reevaluate the whole batch of medications and simply give her what she needed for comfort. So after a conversation with her nurse we took her off all meds except those that were for comfort and care. So the vitamins were eliminated, also was the blood pressure and water pill. I would monitor her blood pressure several times a day to make sure it wasn't elevated and if needed would then give her blood pressure med. Lisinopril. This made it better for mom to cope. She had a stopped eating around the 1st of January because she lost her ability to swallow. Does your mom have an advanced directive? With my mom she signed the DNR when my dad passed away 10 years ago. So I knew exactly what she wanted in terms of life sustaining. Her instructed that there would be no feeding tubes. Therefore our only option was to let her have water in small amounts until she pushed that away. I offered water with a straw several times a day. She declined it most of the time ..But then after a while she was put on morphine. This helped and she did a lot of sleeping. You have DPOA I take it..you can override what ever she has on the Advance directive but sometimes there is guilt with that. I just plainly honored my moms wishes. She was 91 when she passed January 9th. I hope this helps...its such a hard process in the end. You are doing right by her staying and taking care of things. God bless you. Debbie
Wanted to update those who commented on the lawyer question. My goal now is to get our ducks in a row , get our budget/bills n legal matters organized, then start making decisions on how to proceed with moms care and all the other issues. We do have DPOA and AHCD and WILL in place. However issues are deeper than that! I do need to find a sharp attorney. I saw one guy here respond to a post from a place in florida read his posts etc he seemed soooo on top of it, i wondered if you have to meet face to face or do lawyers like that work remotely...anyway that is what i am working on, when i can! .I am going to find this guy here again and call his office, get as much info i can from them! it's a start!
with respect to DR issues tho...I know too that some things are not able to be fixed or doesn't make sense to fix them, in a person who has dementia but...at that stage just taking on ma or just for the information sake, for her comfort etc... it was appropriate to get thorough evaluation of her health!! (that is one thing the NEURO mentioned he has no baseline, to compare). That brings up a whole nother subject that has been lurking in my mind lately, I will attack later, how much meds I should still be giving her and what is considered "extraordinary measures" with regard to sustaining life, etc..
just one more thing...k this makes me realize why i did what i did. every one i turned to for help let me down so I decided i would do it all myself!! I WAS good at getting things done. It was my job to "get r done". I had no clue about the emotional backlash of what i had gone thru!!
So what I want to elaborate on this morning is this issue with the neuro work up! I was upset yesterday but the bottom line is whatever mistake I made was under duress, these darn DR;s are not...it is their damn job to care and advise you properly! that's what they get the big bucks for... and more often then not i feel they drop the ball!! I wont go into all the details why or i would start another rant i don't have the time for today, lol!!!
Anyway as i mentioned when I told NEUR DR. your initial comments (too late now and neuro wudda helped early on) have upset me, why didn't DR R or current DR. ever order this work up, The only reason we are here is due to the fainting spells...he shook his head(disgust.disbelief,,idk) sed he musta had his reasons for it, had something else in mind This made me think back to an early incident with him..where i was inquiring into her health and what i should be doing with respect all of the issues...we got her into a rheumatologist for the severe arthritis and discussed mammogram. I remember him saying to me...well we can do that but what are you going to do with results, not much can be done, so why? just to know? and i sed damn right, i want and need to know what condition my mother is in! it disturbed me at the time but i was still pretty new and healthy and just blew it off. Now, that was a sign of what he thought about her life Further supporting my distrust of medical and legal system.
No kidding Dads DR was instrumental in causing his death.... and attorneys wouldn't even take the case. I will never forget that attorney breaking down the numbers like nothing..."he was 78 n retired, no claim for lost wages, max you can get is 250k take 1/3-1/2 for legal fee's...then take out tax...your left with 60 -70k, it is not even worth my time" i will shut up now or i will go off again....but it just appalls me how little life means to these "professionals".
Sharyn/bob GUILT...oh ya that's another good one! I wont go there today!! But just saying people can be so mean..when i try to share what I am going thru "they are just like, get off the pity pot already...we have heard this before(but do nothing to help), or i love the "I know...you should see my kids" ha not even close!!!
Ok that is all the complaining i wish to do....I hate bitching!!!
Capt hardass....All i can come up with is enjoy the good moments you can with her!!! Oh so bob you really are on a boat then? that is cool...I have thought maybe I should get an RV. Then if mom passes or institutionalized, I can live in the RV and just roam.....live where the road takes me... a boat would be cool too! same concept...my only issue is I get a lil clostrophobic, sp?... I don't like small spaces/being confined, or I would have done it already! and taken ma to travel n see the US... Ok kitty sez time to feed him!
My kids being home-they want me to stay up late watching TV etc...it is nice to have them to chat with and be with. But today I am running on empty as mom got up at 7am! She NEVER gets up that early! Gonna be a long day. Really hot too-and humid. Hoping I can get her to daycare! Mame
Wwelcome to the night owl express. Guilt can become all consuming. Weakly do the best we can in our situations. Where are you moving your boat to? Cap~you say rubber truck some days I think I live in a cuckcoo clock. I hope your mother is doing better with the haldol. Well its almost 2am here
Well it's 3:30am and the river is as still as glass. The Cat is out on the dock torturing crabs and I will really miss it here but it is time to move this big boat to a new home. At least I know that the crabs will be happy we are moving on.
As far as guilt is concerned, screw that. We all get a good enough dose of guilt just by doing the best we can so any more guilt that is imposed by people who don't know any better is on them and not on us.
I understand what you guys are talking about and I understand that guilt can be a tough thing to shake but please know that it will take on a life of its own if you do not consciously continue to tell yourself that guilt does not belong in your head. Necessary for your own survival. No room for guilt.
Hardass, wtf. Watchoo doing there drinking that sh!t? Bet you're snoozing now. I was asleep 3 hours ago and now I am up for a little bit and thought I would check in and see what's going on.
ok, what's a rubber truck? Is that the nutz police? What do they do? Your mom can remember back to Saturday? Sweet.
What kind of bike do you have? Flathead? Panhead? ok that's all I know and I couldn't tell what was what even if they were labeled.
Now the Cat has come in and is giving herself a wash. Probably trying to get the outdoorsey scent of crab off of herself. Natural born killer.
Cattails! I wouldn't know the first thing about being able to rescue an owl. Kudos to you for taking that on. How is that special event for AD going? Has it happened yet?
ok, I will hit this and see if anyone is still up. Will check back in a few.
well gosh, look who came redfaced, to your thread looking for some controversy. i cant seem to stir up shit on the main tonight. i have two healthy gulps of everclear left and a six pack of swill still sitting on the bike. im up for a while, please someone give me a hard way to go.. my mother was jacked up with haldol today and she is card carrying insane. suddenly im the devil and frankly its kind of fun. im kidding, shes mad at me for calling the rubber truck saturday evening but as often as every 10 minutes she comes in my room and hugs me. shes still finding some kind of grounding here.. one or both of us are nuts..
Juju~It is the opposite for me, I feel I get judged by people (not on this site, in my community) because I work part time instead of caregiving full time. I think it comes down to the fact that we carry guilt no matter what. No matter if we are a 24/7 caregiver or we work. We want to do more and more to help our parents, give the best care, spend the best time with them. Continue to hang out here, you are in good company!
one last thought for the day and I am done, good positive day overall!!! What Is difficult about admitting all this stuff is here Is that even if you all understand...I feel like others just think, oh you don't have to work you stay home and just do whatever you want whenever and what do you have to complain about! they look at my decline as a character flaw rather than the real physical disorder that caregiving carries with it as side affects, etc... these are the people you really need to get it! the ones that are close enough to be hands on! and help you if not with ma but chores n organizing phone calls research, etc... ahhhh anyway yes overall a good day today for us! all I can ask for day by day!!
I like to think about the positives this experience has brought me too, in a nutshell "I am a much simpler, patient, understanding and compassionate human being" I am so grateful for that!!! That would be a good thread...maybe it is out there?
My mom is so funny!! I took her out today for a haircut at her usual salon and hairdresser. She told me afterwards "I don't like this hair." I said it is the cut you always get, it looks really nice. she said, "I don't like how grey my hair is, it was not this grey before and all the wrinkles on my face, where did they come from, do you think it is the medicine they are giving me?" When we went back to the memory care unit, everyone told her how cute her hair was and she was beaming from ear to ear!!
Amen to everything Bobbie and Sharynmarie etc said! I used to vent a lot more-especially whey I first came here...It was such a relief to finally find people who really understood! The isolation is killer too so this place was my savior! Between this and Facebook-I don't know what I would do! Sometimes I just don't have the energy to write about what is going on...sometimes I do! I assume that is how it is with everyone. I love reading what everyone says-the good, the bad and the ugly-or gross! Whatever-it is all good. I am so happy I found this site and it sounds like you are too Juju! As Bobbie says "Vent and Live!" We are all here for each other! Mame
Juju~I know how you feel about posting. I have days where I just want to short circuit the internet with posts. Dear girl, what you are doing is damn hard! I am not a 24/7 caregiver like you and many others, but all my thoughts day in and day out are about my mom. You are doing so much and you are now getting information together by learning about how a neurologist can treat your mother, (my mom started taking Namenda a little over a month ago and she is mentally incapacitated), my mom refused to take it in the early stages, so don't beat yourself up for not knowing something. Yes, talking with an Elder Law Attorney would be in your best interest, getting a DPOA, living trust if necessary and advanced health directive. Enjoy your boat time with the little umbrellas and I will toast you!! Hugs!
Bobbie well said...Juju we do care and you may go on as long as you need. I have been there. It's our sanity. You are doing everything you could possibly do right now. Don't worry about what you could have or would have..it will eat you up. Now is what's important. Your mom has dementia...and with many different types out there you will find many symptoms. I did the research and googled...found out a lot from the caregivers here too. They are your best resource. With Lewy Body dementia the last stages will be like jumping off a cliff....fast and furious. If you think she might have that look it up. Fainting is one of the symptoms of dementia and I found that out with my mom. She fainted 3 times while living with me...and I know before that she must have fainted many other times. Lewy bodys fill up the gaps in the brain where the sensorys will be disconnected. Hence a lot of brain activities that are affected such as forgetting, asphasia (speaking), fainting, the abilitity to swallow, bowel and bladder functions. All of these are part of this horrible disease. I hope this helps. But know you are doing the best for your mom...caring for her. God Bless. Debbie
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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Hey, any news on Deef? I hope she is ok.
Juju: Keep posting. My heart goes out to you. You are getting lots of good info and we all care about your posts.
hope your new local is perfect, swing by the gulf of Mexico, go through Panama canal, turn right head to Washington go in at the Mighty Columbia port around dams and head to Spokane I will meet you at the carousel and we can go to Tahiti ....
Jen
Just had a lovely visit from Diane and her beau and her friend. They are on their way somewhere and passed right by here so we got to hang out on the boat for a few minutes.
It was so good to see her and she looks great!
So proud of you Diane!
lovbob
Right now I consider her decline to be very slow. IF I were to try to describe it thru my demented glasses i'd say: If when I took her on she was a 10, 8.5 ys later she is a 7 but an 8 before the fall (hip/shdr break) in Feb.
I learned thru home health, thank goodness for them, that is normal the stress n pain of the injury does cause decline. I'm just glad we we given an option to not operate, the anesthesia would have been worse affect...anyway
I should just make a "my story" to start my journal. that would be good to just help organize thoughts and tasks!
You have DPOA I take it..you can override what ever she has on the Advance directive but sometimes there is guilt with that. I just plainly honored my moms wishes. She was 91 when she passed January 9th. I hope this helps...its such a hard process in the end. You are doing right by her staying and taking care of things. God bless you. Debbie
That brings up a whole nother subject that has been lurking in my mind lately, I will attack later, how much meds I should still be giving her and what is considered "extraordinary measures" with regard to sustaining life, etc..
So what I want to elaborate on this morning is this issue with the neuro work up! I was upset yesterday but the bottom line is whatever mistake I made was under duress, these darn DR;s are not...it is their damn job to care and advise you properly! that's what they get the big bucks for... and more often then not i feel they drop the ball!! I wont go into all the details why or i would start another rant i don't have the time for today, lol!!!
Anyway as i mentioned when I told NEUR DR. your initial comments (too late now and neuro wudda helped early on) have upset me, why didn't DR R or current DR. ever order this work up, The only reason we are here is due to the fainting spells...he shook his head(disgust.disbelief,,idk) sed he musta had his reasons for it, had something else in mind This made me think back to an early incident with him..where i was inquiring into her health and what i should be doing with respect all of the issues...we got her into a rheumatologist for the severe arthritis and discussed mammogram. I remember him saying to me...well we can do that but what are you going to do with results, not much can be done, so why? just to know? and i sed damn right, i want and need to know what condition my mother is in! it disturbed me at the time but i was still pretty new and healthy and just blew it off. Now, that was a sign of what he thought about her life Further supporting my distrust of medical and legal system.
No kidding Dads DR was instrumental in causing his death.... and attorneys wouldn't even take the case. I will never forget that attorney breaking down the numbers like nothing..."he was 78 n retired, no claim for lost wages, max you can get is 250k take 1/3-1/2 for legal fee's...then take out tax...your left with 60 -70k, it is not even worth my time" i will shut up now or i will go off again....but it just appalls me how little life means to these "professionals".
Sharyn/bob GUILT...oh ya that's another good one! I wont go there today!! But just saying people can be so mean..when i try to share what I am going thru "they are just like, get off the pity pot already...we have heard this before(but do nothing to help), or i love the "I know...you should see my kids" ha not even close!!!
Ok that is all the complaining i wish to do....I hate bitching!!!
Capt hardass....All i can come up with is enjoy the good moments you can with her!!!
Oh so bob you really are on a boat then? that is cool...I have thought maybe I should get an RV. Then if mom passes or institutionalized, I can live in the RV and just roam.....live where the road takes me... a boat would be cool too! same concept...my only issue is I get a lil clostrophobic, sp?... I don't like small spaces/being confined, or I would have done it already! and taken ma to travel n see the US...
Ok kitty sez time to feed him!
Love n strength!
Juju
Cap~you say rubber truck some days I think I live in a cuckcoo clock. I hope your mother is doing better with the haldol. Well its almost 2am here
The Cat is out on the dock torturing crabs and I will really miss it here but it is time to move this big boat to a new home.
At least I know that the crabs will be happy we are moving on.
As far as guilt is concerned, screw that.
We all get a good enough dose of guilt just by doing the best we can so any more guilt that is imposed by people who don't know any better is on them and not on us.
I understand what you guys are talking about and I understand that guilt can be a tough thing to shake but please know that it will take on a life of its own if you do not consciously continue to tell yourself that guilt does not belong in your head. Necessary for your own survival. No room for guilt.
Hardass, wtf. Watchoo doing there drinking that sh!t? Bet you're snoozing now. I was asleep 3 hours ago and now I am up for a little bit and thought I would check in and see what's going on.
ok, what's a rubber truck? Is that the nutz police? What do they do?
Your mom can remember back to Saturday? Sweet.
What kind of bike do you have? Flathead? Panhead? ok that's all I know and I couldn't tell what was what even if they were labeled.
Now the Cat has come in and is giving herself a wash. Probably trying to get the outdoorsey scent of crab off of herself. Natural born killer.
Cattails! I wouldn't know the first thing about being able to rescue an owl. Kudos to you for taking that on.
How is that special event for AD going? Has it happened yet?
ok, I will hit this and see if anyone is still up. Will check back in a few.
lovbob
What Is difficult about admitting all this stuff is here Is that even if you all understand...I feel like others just think, oh you don't have to work you stay home and just do whatever you want whenever and what do you have to complain about! they look at my decline as a character flaw rather than the real physical disorder that caregiving carries with it as side affects, etc... these are the people you really need to get it! the ones that are close enough to be hands on! and help you if not with ma but chores n organizing phone calls research, etc... ahhhh anyway yes overall a good day today for us! all I can ask for day by day!!
I like to think about the positives this experience has brought me too, in a nutshell "I am a much simpler, patient, understanding and compassionate human being" I am so grateful for that!!! That would be a good thread...maybe it is out there?
lovbob