The Caregiver... How are YOU doing today?

Frustrated today...been trying to get MIL oxygen level stabilized...if she's keeps it on it stays in the 90's but plummets to the mid 70's without...she gets bored and wants to go to bed...no problem till she has a hissy fit to get up and have breakfast at 4 or 5...tonight I told her she needs to stay up later so she can sleep through the night...started clutching at her chest saying she was so tired she had to go to bed acting like she was having trouble catching her breath...Her oxygen level was at 96...just like a little kid trying to manipulate me so she can do what she wants when she wants. I put her to bed and told her that if she blows that whistle to get me out of bed at 4 in the morning I'm going to take it away from her, unless there is something seriously wrong...said she wakes up at 4 every day and stays real quiet so she won't disturb any one...I sleep with a baby monitor by my head and she snores like a freight train, I am well aware of when she's sleeping and when she's not. If one eye pops open she's blowing on the whistle to have me come tell her what time it is..(she has a clock with 2 inch high red numbers that glow in the dark but she has to turn her head to the side to see it, and yes she does have failing eye sight but she can see that clock because it I ask her to look at it and tell me what time it is she can do it... about the only thing she can still do for herself is get food from the plate to her mouth so it's not like she does not get lot's of attention during the day...she's very proud of her whistle...she tells her doctors it works great because when she blows it someone is always there right away...she has so many things wrong it's hard to tell what to do for her and when she pretends to get attention or her own way I get frustrated...when I told my husband what I said about taking her whistle away he kind of chuckled and said that could be a real cat fight and I think he's right...really hoping it won't come to that. I think there is so much control that has been taken from her by necessity that she is determined to have her way by any means that she thinks will possibly work...hard to tell where the dementia and plain old fashioned stubbornness intersect...thanks for letting me vent...I need to get myself in bed...

I was reading an article on some "tips" given to hotels in Britain. I wonder though how accurate these tips are. Is it true that we're not suppose to smile or look into the eyes of French people? Really??? I should have Googled that but..... I've never dealt first hand with Germans/Austrians to know if that statement is also true. It's like saying that All Americans are loud and rude. Not ALL....

Hoteliers are warned tourists from Hong Kong should not be given a four-poster bed because they associate them with 'ghostly encounters'.

They are also told they should not poke fun at Indian accents.

DO: Understand that Indians are amiable but have a tendency to change their minds quite frequently.
DO: Ensure tourists from Russia – a 'tall nation' – are housed in rooms with high ceilings and doorways.
DO: Anticipate all of the needs of a Japanese visitor – even if they haven't told you what they are.
DO: Deal promptly with any complaint from German or Austrian tourists, who can be 'straightforward and demanding' to the point of 'seeming rude and aggressive'.

DON'T: Ask superstitious people from Hong Kong to sleep in a historic property or a four-poster bed because they associate them with ghostly encounters.
DON'T: Exchange a smile or make eye contact with anyone from France who you do not know.
DON'T: Describe a visitor from Canada as 'American'.
DON'T: Try to talk to Belgians about their country's politics or language divisions.
DON'T: Say 'no' in a direct way to a Japanese tourist – instead think of a 'nicer alternative'.

Just Venting!!

OMG It's the 3rd time in 4 days my Mom's woke me up at 4am because she's having a panic attack! Today it's because she's nervous she won't be ready for church and mass isn't till 11am!
Her Dr gave me ativan to give her but it makes her very groggy. I know how to calm her down without the pill BUT I'm not happy about getting woken up a 4 every day!!!

Thanks for listening!! I hate dementia!!

BTW book I had a German exchange student once and we could look her in the eyes..lol

Also it is times like this that my useless siblings really piss me off!!

Reddog, Assandy - have you both noticed that your mother wakes up at 4am?

Reddog - I'd wean her out of the whistle. Maybe buy a bell for replacement. I don't think a bell is as loud and piercing as a whistle. And if you get frustrated enough, maybe you can tape the ball to the wall so that when she shakes it at nights, it won't make a noise. Maybe. I don't know.... I tried to get father a bell and he was so not interested in it. So, I don't have experience on the pros/cons of using a bell.

Ha! 4am must be the bewitching time!!! They are casting their spells on us!! LOL

I did notice that I'm acting like her and feeling sorry for myself by getting mad at my siblings... I'm not very proud of that weakness.. But it's better than taking it out on Mom or my supportive husband..

I don't know about the demented casting their spells but the early hours of the morning are the times when the body is at it's lowest ebb. Don't know if this will work but try leaving a snack where your loved one can reach it and maybe the whistle will get to sleep later.
I won't even comment on some of the advice given to British hoteliers I would offend too many people

I would be delighted to hear that ANY advice on customer service had been given to English hoteliers. I have seen no evidence of this.

But it's true about not saying no to Japanese people: it's incredibly rude, never do it. You say "yes. Perhaps we could think of another way as well." Or, for example, if the question is: "Is the restaurant still open?" a good answer would be: "The kitchen will be happy to arrange a light meal at any time; and yes the restaurant is open from 08:00 until 21:00." And if you really can't think of any alternative to "no" do what Japanese ladies do and giggle. Disconcerting to Westerners, but polite in Japan.

My ex was once explaining some complex medical treatment to a middle aged Japanese lady patient whose English seemed excellent; but the more she giggled and simpered, the more concerned he became that she hadn't understood, so he spelt things out as if to a three year old. He later discovered that she was a consultant histopathologist at the Hammersmith Hospital.

And an old friend of mine who lectured in Mineralogy at Kyoto University had a senior female colleague who wore "Hello Kitty" hair ties.

Chinese people, on the other hand, in my experience, will never hesitate to tell you that you're being stupid. They don't mean to be rude, just helpful. Try not to take it the wrong way.

Today I learned.... C must be Japanese.

correction.... Chinese

LadeeM - oh dear! When you said Japanese I wondered if it was because she wouldn't take no for an answer, or she kept giggling for no obvious reason...

well that too CM.....maybe she is mixed..... I just know I will be so grateful for this part to be over...

Hey everyone! Finally got internet back on today. :) Things are looking up. WE SOLD OUR LAND! We got what we wanted for it, too. The deal finalizes on the 20th of February. Stable ground at last. Thank you, God. I mean that literally. What I've been through these last few months...hell, years.... has changed me forever. I'll never be the same again.

I think about my mom a lot. I'm sad and there's so much pain for so many reasons. I've dealt with a lifetime of pain and anger because of my mom. I think about her, I feel so much grief...not for what I lost, but for what I never had and what I'll never know.

One thing stands out in my mind a lot. The last time I visited her when she was still alive. We were at the NH and were about to leave. I looked back and she was staring after us as we walked away. I'll never forget the look on her face that day. She looked so ungodly sad, so small and....so alone and forlorn. I went home and bawled like I hadn't bawled in ages. Even now, just thinking about it makes me feel like my guts are twisting. The pain of that at the time, and even now, feels like a white hot fire inside my whole body. I can't describe that kind of agony. I felt like two cents, like the biggest shit in the world. The look on her face that day when I looked back as I was walking away will haunt me until the day I die. I've said I'm sorry, I'm so sorry, over and over again since she died, praying that somehow she'll know. I never wanted my mom to feel what I've felt my whole life because of her....fear and aloneness. Somehow, even though I took care of her for over a decade, even though I went above and beyond a million times, even though I gave until I couldn't give anymore, I feel I've failed. And I'm just so damn sorry. I know it was necessary for my mom to be placed with professionals at the end, I know she needed so much more care than I could give when the alz had progressed that far and yet....that look on her face when I left that day, the last time I ever saw her alive, made me wish in that moment that I had kept her with me at any cost. But I didn't because I couldn't. And I'm just so damn sorry.

God Almighty, the pain, the pain, the PAIN of this god forsaken disease....for her, for me... Years and years and years and years of pain.... So much pain....

My mom is free. Hopefully, with time, I'll know what life without pain really means. I was never free of it as long as my mom existed and I'm not free of it now. . Maybe, please God, I'll be free someday, too.

Take care, ya'll....

ladeeM, C is something else, no matter her heritage. :)

Never knew my mom was Asian either. I can't imagine the nightmare if that WAS her culture. Let's just call it the elderly culture. They really are the center of the universe if they are narcissists. My way or the highway.

The highway is looking pretty good.....

My mom had the 5:45 thing going with me when she lived here. Now she prides herself on getting up at 3:45 (!) at her AL to beat out all of the 'old people'.

Thank you God that she does not live with us anymore. I'm not saying it's easy even with her in AL, but I'm not getting up at 5:30 anymore....

Barbara, you are in pain on so many levels and from so many things. Have you wondered if that look on your Mom's face might have been because she knew she was close to death and there was no way she could make things right with you and she was actually sorry. You will be free just as you are free of the abject poverty you endured for so long. God has a plan for you. Go to her grave and talk to her tell her all the things you have told us. Forgive her and ask for her forgiveness. What is done is over and done with nothing can change that but you can make sure you don't pass it on. That being said and you have made me cry too.
Welcome back to the real world everyone will be pleased to hear from you. Whatever you endured has made you stronger so don't let those lessons go to waste you have a lot to offer to others who may be suffering.

SA - Please do not beat yourself up. We went through that enough when they were alive. feel that Veronica has it right. I think they know what is going to happen. When I went into my mom's room the morning she went to the hospital she asked me to lay down with her because she was dying. Of course, I did and then when she felt better and asked to go to the hospital and it was during her 3rd day there that she went into cardo arrest. I feel that she DID know that she was not coming back home. Believe me if I had thought that I could not handle her anymore I would have done what you did. I have a lot of regrets but I am trying to think of the good and not the bad. I talk to her a lot when I am alone. I say I am sorry to her a lot. I think of her often and I know somehow she knows I am thinking of her. I wish that I could have relieved her pain, her confusion and her feeling like she was not worth anything. I could not. I wish we had a better relationship too. I am rambling now but Do Not Feel Bad. Yes, talk to your mom if you have too. TAKE CARE OF YOU!!!!!!!!

SA-
I think that Lav has it right. I have read so many stories of the end on this site and they are about the extreme sadness that is felt when the loved one dies. All are sorry they couldn't have done more. The truth is we all have our limits when we realize it is just too much to continue. I hope when my turn for the loss comes I will have but one regret, and that is that I could not make the disease leave this woman who at one time was so successful and smart. It is nearly impossible to remember that woman now, she is barely a shadow of what she once was. Let your pain end and be grateful that your mom's pain and sorrow has ended as well. You did so much for her for many, many years and be grateful for the time you had with her. Most of all be proud of the person you are and all you were able to do for her. And you did it in a way nobody else could. She knows and is extremely grateful to have had such a strong daughter. There aren't many that can take on this job and do it well.

Book, where do you come up with this stuff? LOL

Reddog, book has a great idea about a bell, I would never be able to tolerate a whistle! When I was a kid and mom was stay at home mom, I was to stay in bed when sick. She even gave me a bell, and ok when younger probably over used it. But I really hated that darn bell as I got older, please just leave me alone now!

And taping or removing the clamber, is that what they call them, is wonderful idea. They would not be able to figure out why it isn't working. And those that are hard of hearing may not know if it working or not. In my case, mom would not remember she rang the bell, much less why she rang it to begin with.:-O
maybe there is such a thing as an electronic bell or whistle that can be disabled when some peace and quiet are needed. ;-)

Glad, we receive worldwide travel info on all the current updates on airlines (some I never heard of), tourism (problems or tips) of different countries, hotels and ground transportations. Needless to say, we get like 10-20 emails on all these. I kept one article on the different paintings done on some US carriers.

CM, you know the Hello Kitty? Have you seen Eva Airlines? They actually painted "Hello Kitty" outside their plane. If you Google these words exactly, you will find it instantly. Now Eva Air is from Taipei, Taiwan. So, this Hello Kitty brand is very popular with the Asian market.
"Hello Kitty plane makes maiden U.S. flight to Los Angeles - CNN.com"

I still get daily thoughts from my email but most don't really apply to us as caregivers. When I read this, I did think of us as caregivers in the trenches.... of others who made a stand of taking care of themselves over caregiving non-family members... and of SA and Lav and Monday who have recently had a loved one pass away...... Sometimes, the important thing in life is to keep moving
Daily thought:
People are like Bicycles. They can keep their balance only as long as they keep moving." by Albert Einstein.

Thanks so much you guys, your words are a great comfort to me. V, I'd like to think you're right. When I think of what it must have been like for my mom to have feelings and needs but no way to express them anymore, no way to communicate anything at all... **shudder**

Lav, yeah. I'm not just stressed(what a simple little word that is)by this whole journey through the alz nightmare, I'm traumatized by it. I talk to my mom, too. I'm glad I'm not alone in the doing. I stare up at the sky sometimes in the middle of the night and I ask, 'Where are you, mom'? I asked God to give me a sign, something, anything to let me know my mom was ok. One night, staring at the sky, I noticed a strange star formation, the only stars I could see in the sky that night...two small stars side by side and one larger star directly underneath them. If you had connected the dots it would have made a skinny triangle, with the large star at the point of it. The next night the two small stars were there but the larger star wasn't. I haven't seen it since. Sometimes I feel like I'm losing my mind.. But I feel God heard me and gave me my sign...

Glad, yes. The lady at the electric company that helped get our electricity back on said it well when we talked about alz...her mom has it, too...she said simply, 'I'd rather be dead.' Indeed. I'd rather die at 60 with my mind intact than live to my 80's with my mind fading away...

So many nights, before we got the net back, I'd get on here and write and write and write, trying to get all of these crazy emotions out of my system. Maybe I'll copy and paste some of it here someday. How I've managed to get through all of this without resorting to the bottle or some really good grass by now is beyond me. (Actually, if I'm honest, I HAVE been trying to get some grass the last couple weeks...50,000 drug dealers and nobody has squat. lol Maybe it's a sign.) Sometimes I just want oblivion for one damn day....just one day to rest my exhausted, worn out mind, one way or the other. One day of peace to blast some Zepplin, smoke a joint and just...veg.... **snickers** ;) Ah, well....

Time to go play Dragon Cave and retreat into a world of fantasy. Later ya'll...Take care... I hope everyone's day is a peaceful one...

SA glad you're back here!! Keep writing and stay strong!

SA,
There is plenty of pot here in Colorado for the wanting. And in Washington State as well, two places in the country.

Ok, everyone give a collective shout of '''' Bad and Wrong Ladee""" My encounter with the oldest son last night just wore me out.... I just ended up shaking my head yes yes yes.... and agreeing with the lies ( they HAVE been trying to find someone) and this is what set me off..... Sunday nights are inconvenient for us..... by this time any professionalism I had was out the window..... oh really, well I'm not here to take care of the whole damned family.... but we can put that in caps because I was shouting by this point....I swear to God ya'll..... I will never be a caregiver again after this mess is over.... talk about a sign from God...... !!!!! I know there is a bigger lesson in all this, for me..... but damned if I know what it is at this point..... and I did tell him.... when and if ya'll decide to put them in a NH, I won't get a notice, any severance pay,I'll just be another problem ya'll have to deal with....
So tired of thinking about this, dealing with this, feeling all this....and still no answers.... so Ladee gets to be the bad guy and just walk the hell away one day because I am so burned out...... and no one gives a damn... so for all of you out there who have sibs who wont help... believe me... I understand on some level how you feel..... but we all have that ugly monster called 'guilt' that runs our lives and makes s***** decisions for us..... I am just so tired.

LadeeM
BREATHE! You have been in an impossible situation. Maybe he was disgusted with the football game yesterday, there certainly is a lot of that here! So, are you leaving now? What is going on? We all have to blow up sometimes, and you have been at the end of your rope for a long time, you were due! He is probably feeling some guilt this morning too.

Ladee I am so sorry for what you are going through-my thoughts are with you girlfriend I do not know what to say to make it better for you.Take care of you for a change.

LadeeM, I'm sorry, I have no idea what's going on, but I get that you don't want the job of care giver anymore. As far as I'm concerned, there isn't enough money in the world that would make me get into your line of work, even though you do meet gems like Gene and Stu. The hassle, the heartache, the crap you have to deal with...forget it. I feel you totally.

Maybe a vacation is in order, some time away to relax and think about all this in a calm environment, time to put it all in perspective. Maybe a new game plan is in order. Think about yourself for a change, God knows you spend most of your time thinking about everyone else...

(((Hugs))) Ladee. I support you in whatever you tell these jerks. This has been going on too long for your own well-being. I agree with Austin, take care of you and let go of any guilt. Guilt is the LAST thing you should be feeling and all you've done to help them. Stay strong sister friend!

Thanks everyone..... I was told by my fav dil today there is going to be a family dinner to find solutions.... good...... I've only been bitching and complaining for a year now....

I can walk away ya'll, that is always a choice... just as it is for the rest of you.... but it is more than guilt keeping me there.... I went in one day, Gene face is blood red, he is sweating, it got up in the high 70's that day... he has on a sweatshirt, and no WATER....... got him another shirt,,, a huge glass of water and bathed his face , neck and arms until he was cooled down.... turned off that damned heater... opened the back door.... and where was C??? Piled up in the bed asleep.....
He is not given breathing treatments when I am not there... so he was drowning in mucus.... that night he ended up puking up his dinner, sure that dehydration played a part in that... and messing his pants..... which sometimes is a prelude to him having a TIA...... this is humiliating to him ya'll..... tho I reassure him , and just makes jokes about him not being as full of sh*t as he was a few minutes ago..... he laughs.... and he knows that it is no big deal to me... it's just getting him cleaned up and comfortable again...

Every single one of you know the level of exhaustion we can get to..... and I could not stand to be in the same room with my own father.... but he was NEVER neglected...... WATER !!!!!!! What the hell does it take to give the man some water.....

So no, I can't WALK AWAY until I know that Gene is going to be taken care of. told the dil today Ms. Thing is NOT going to be happy in a NH because the aides are too busy to give a big happy damn if she isn't getter her damned way about something....and she wont get to drink her wine everynight and pontificate her unending negativity about everything and everyone.... I didn't make this bitch miserable... but I truly am at a breaking point..... and NOW the family finally HEARS ME....... damn it damn it damn it.....

And if they can not or will not get me a day off,,, then they are damned well going to unass some more money for Sundays.....ol' Ladee is going to get something out of this deal, besides a royal ass f**kin'''' oh yeah, I have a filthy mouth on me..... and any of you that have known me for awhile... you KNOW I am not in this for the money... if that was the case, I sure wouldn't have been doing this for the past 15 years. And I am not looking for accolades or attagirls... it's just my 'calling'', my purpose.... hell, poor old folks in the grocery store get tired of being accosted by me trying to help them get something off the top shelf....!!!! lol

And I am very clear what neglect triggers in me... so instead of being resentful and angry about what I didn't get... I've tried to give some respect and dignity to those that society have thrown away....I've worked in NH's folks. and I will do anything I can to keep them out of one... but I HAVE to have some cooperation, to be heard. to be taken serious when I report any situation that is out of my control....so who the hell knows what will happen here... I just know I have reached my limit.... and if the family chooses to continue with this farce of care, then APS will be called with no hesitation on my part...... damn it I'm so tired.....

And no, can't take a vacation..... doesn't mean there isn't one in my future tho....
So will keep ya'll updated on the drama of ' What next?' and thank you all again for listening and the support is priceless to me....

Keep venting ladeeM it seems to be working! We're listening...

LadeeM - I am so sorry for what you are going through. No one can blame you for going off on the son. Poor Gene!!!! You are sooo good with him. He knows and appreciates how much you care for him. I am with you on him being humiliated. Mom was so embarrassed about messing on herself. I tried to make sure that she knew I loved her and did not mind taking care of her. I know you are not the kind of person that does it for the money. In my view there isn't enough money they can pay you. Do you ever think the family will Get it. YOU TAKE CARE OF YOU!!!!

When am I going to stop crying? I ran across a number for an old friend and left a message on his phone about Mom and I lost it. I do not need much these days to get the tear ducts going. I wish I was the only one in this but I have to put up with brother and his wife. They were here yesterday. They hardly do ANYTHING. Then I don't even know what happened all I know is that bro was yelling and screaming at me. Telling ME that he needed a day OFF. I mean his face was red. I thought he was going to have a heart attack. They are still on me about getting an apartment. With WHAT money will I do this with. My bro and I wrapped and boxed mom's china to try and sell at an auction house in the city. Bro did not do it I helped him. His wife just sat there throughout the whole thing. She even said that she was just watching. I will tell bro not to bring her unless she is going to do something. I will also tell bro to leave his DAMN anger issues at home. They wanted to take me to a place to look at furniture I will need for my place. I said NO!! I will go look when I feel like it and with a friend not an A-hole. I just want them to stop pushing me. I wish I had a one on one therapy session today instead of just a group. Oh well, I AM going to be okay. Just keep bro away from me. Take care of YOU ALL!!!!