My "whine moment today." What's yours?

Patricia, I am very sorry to hear your sad news. I would hazard a guess that the exhaustion you feel is emotional, which manifests itself in physical exhaustion as well. Definitely a shock to your system and to DH. I'm sure you had his best interests at heart in wanting to lay it all out on the table and share the road ahead. That way there is no dead elephant in the middle of the room and it gives him the freedom and opportunity to express his feelings. It will take a while to process all of this information both mentally and emotionally. Take care of yourself.

Globtrotter, I sure wish your Mom wasn't such a pill for you today, after all the ways in which you made sure she wouldn't worry, and in the end she acted like such a little poop towards you. Sometimes you just can't win for losing. You know that she doesn't mean it, she just wanted to lash out because she doesn't have any control over her own mind,, and you will always be her target because your there with her and she knows she can. It doesn't make it any easier though.
Gershun, you really miss her, and that is understandable. I miss my Mom too! It won't be as painful after a while, but it will never go away. I hope your sadness lessens with every passing day! You too Jeanette! Eventually your sadness will be more of the happy memories type. Good night ladies!
Sheradale, you my friend are getting your Just Desserts! Good for you! I call it Karma!

Stacey, thanks so much for your validation and understanding. I like your pill analogy - it's a bitter one (lol). That's exactly how I feel lately - can't win for losing, it generalizes to my self-employment as well. I have to be careful about that. As you say, mom is lashing out because I'm there 24-7 and nobody else is around, and it's her only source of control. It is astounding how she has no idea how she is behaving even as she is doing it. I sometimes wonder if, in addition to dementia, she has multiple personality disorder (however, her behaviour is pretty standard right across the board, lol).

Well, Mama was laughing and talking and hooting and hollering all night long...We are both worn out this morning...She is still going but she seems to be getting sleepy now..once she falls asleep I bet she sleeps all day...She keeps talking to a baby....keeps saying "pretty baby" "there's my baby"...bless her heart...her vitals are all good so I guess no need to worry...we'll just roll with it...I am about to fix her something to "eat"....

One somewhat funny thing..this morning I walked over to her bed and she said...you cute little sweet thing...I said.."well thank you Mama"...she said "sure"...I told her.you're my precious Mama..and she said "I know it"....then she told me she didn't think much of me ...that she admired my brother so much...poor little fella'............. (sound of crickets).................it was almost funny...nothing I'm not used to for sure......oh well...in spite of it all I know she loves me too......but isn't that weird..even in this state...she still has no problem telling me how much she thinks of him and not me.....

Hope, I'm glad you were able to get your mom off the patch - and you and many of us thought that yesterday was the beginning of the end. Very disturbing what drugs can do, although clearing the build-up in her throat must have been a blessed relief. And yet, in spite of the side effects of the medication that one lucid truth stands out - her favouring your brother over you. As I have always believed, there is the disease, the personality and the personal history. So difficult especially since you love her so much!

We have the rudest Hospice nurse and again this morning,she has upset us instead of helping us.How I wish we would have traded Hospice companies a long time ago but neither of us ever dreamed Mother would get so many extra days and were so tired of it all.Last October,2014,they tried to pull my Mother off service.Mother and I appealled it with The Quality Improvement Organization and won the appeal.Our social worker said wed never have to worry about it again but the rude nurse brought it up again today and said she didnt think there was any worry about recertifying Mother for Hospice after I have told her never to bring it up again.This nurse just likes to muddy the water and stir up shit.When she called in Mothers meds today,she asked if another mans meds were taken care of,breaking his privacy.What makes this a stickier situation is that the bathaid,Mother loves and the mean nurse are best friends.We have enough problems without their stuff too.Stress on top of stress,day after day.
The Hospice chaplain comes this afternoon.We Love him.
The nurse didnt order Mothers diapers either and told me to go buy some and theyd reimburse us....#1.Figure a way to leave Mother to go.#Come up with the money...I thought this was hospices job...
Anyway,this is this mornings whine.Thanks all.And also,thanks to everyone for yesterdays support.The support i have received on this website AC has kept me going like a lifeline.God Bless You.

Patricia317, my husband has PD also, in Stage one. Having a spouse with this or any other progressive illness just rocks you to your soul. There are so many emotions mixed with all the physical effort of helping them. I find that I can research, make lists, make calls, etc. in a fairly logical manner with parent care. But researching PD....my breathe hitches and it's like I'm suffocating from the flood of emotion. I need to know what's possible, but seeing it in writing or saying the words makes it real. Every new change hits me, then I right myself. So yes, dear, it's so absolutely normal and reasonable to feel exhausted and overwhelmed. I've found it helpful to go take a shower and sob my heart out where no one can see or hear. Hugs to you.

Well my sister has left for now. We picked dad up early for breakfast nearby.
Ate it all but I should have washed the syrup spots off his pants. My sister didn't even notice.
We noticed the odor is back in his room. It comes from the heating cooling wall unit. Took the screen out and washed them. The director took the entire front cover off as she said someone else mentioned an odor in another room. They will clean it. My sis thought it smelled like urine I wasn't so sure and I mentioned this.
The director said they caught dad peeing in the kitchen garbage can a couple evenings ago. YIKES!!
Going to miss happy hour as I am expecting a friend to come plus getting rid of some siding via craigslist and someone is coming to pick up.
And just now our power flipped off. What the heck? Very warm and humid today

Hope, you must know that your Mama didn't mean it, that medication is still running it's course and working it's way out of her system, she too, is overtired and doesn't know what she is saying right now. I'll bet you are exhausted after yesterday and all nights activity, do try to rest, AND EAT, today when she does! I am sorry she said that, pay it no mind, you know you are doing your very best by her!
Luckylu, while Hospice was incredible for us, there were several times when they dropped the ball, ordering Mom's meds, and that was the IV Morphine. I mean, you Can't just stop that drug , especially at those levels and start on oral tabs, ya know? The ordering of pad, and wound care supplies, all were delayed several times, but when her pik line was plugged in the middle of the night, and it was constantly beeping, and the Night Nurse couldn't get to us for 3 hours, that was the worst, only to have her come and "milk the line" , a solution that could have been explained over the phone, well that was extremely frustrating. But I know that you are scared and alone. Unable to just leave her, so I would get on that phone and demand that those supplies be on your porch Today, no exceptions! Dang that really irks me and I'm sure you are PI**ED! Also, you should bring up that breach of confidentiality to her Superior, as that is so Not Cool, because it she is doing it in front of you, there's no telling what she might be speaking of behind your back, especially if they are friends! There, that's my Rant for the day I hope! You take good care Sweetie! And your Mom too!

Oh Crap Oh Crap Oh Crap. I just lost my 10 page post so eloquently written, and I am pissed! I will try to recreate it later! Ugg!

Stacey, when I am feeling the need to be thoughtful or long winded in a post or e-mail I will compose it in a WordPad document, then paste it where I want it to go later. There is nothing quite as frustrating as having your thoughts disappear just when you have gotten them perfect LOL

Cwillie, that's a darn good idea, but I don't know how to do that, how sad. It's funny, I was nearly done and poof, but now it Does in Fact look as though it Did post. I think my tablet was upgrading something at the time, but there it is, hmm! Cool!

Hope, another thing I wanted to mention is that, Mother's and daughter's have very different relationships with their boy and girls. Boy's will always be Prince's in their Mother's eye's no matter what, and girls will, always be their confidants, and because we are well girls, we can get cut deep, be nasty, and bitchy, but our love for each other is will always prevail, and in our darkest hour of need, we will be there for each other. Boy's often go to there wives for comfort but girls typically will be the nurtures and therefore comfort everybody. Mostly but not always. Tis true in my family past and present, three of my siblings have Prince's, and we All have princesses, or Cinderella's, tee hee!

57twin, I am fairly new on the blog and don't know all of your family dynamics, it sounds as if you are happy to see the back of your sister. What I have picked up in tid bits here and there is that you would like to see your sister see and help with your Dad more, but more importantly, you would like to feel appreciated by her and you aren't getting that and she is oblivious to the obvious. Also your heart hurts that your Dad may not even recognize her next time she comes, and that she is missing out on her relationship with him, like you have with him, and it may be too late. It is sad and painful, and yet it is she that will have to live with the way she leaves things but you are doing the most beautiful and loving thing someone can do for their parent and that is be there loving and seeing to them til the end, and the satisfaction you will be rewarded with will hold to you forever. You unfortunately cannot protect her eventual feelings of possible guilt, she may not even have any as everyone is different, but you won't have any, and that will be your own reward. Peace in the knowledge that you did everything in your power to make him feel loved honored and cared for always, believe me, it's a great feeling. It will allow you to have your memories together completely unencumbered, and except for the last few years of his decline, they will eventually become happy memories, I truly believe that! At least it is for me. If I'm off base, or stepping over the line, let me know, but I do know that you are doing a Brilliant job caring for your Dad! Take care of yourself! Stacey B

Months and years go by and I never see out of town friends, but now that I have so much going on and in a crises mode of sorts, 3 different groups of people want to come visit from out of state in the next day to month and a half. It isn't because I am in crises mode,they don't know the half of it.... it is because it is convenient for them for one reason or another to come to the area. Ugh....I usually get through these visits ok but I fear I am going to be somewhat preoccupied and distant in my thoughts. It is like radar that this often happens. The timing of these visits is always onto crises mode, and it isn't like I am often in a crises mode....

Katie, I have found that too about crisis mode. If ever I must really focus, give my all to a crisis, it's like all h*]l breaks loose, everyone needs my attention, and here I was just trying to actually accomplish something that has to be put off again.
I would love to see out of town friends/family, but we just can no longer give them a place to stay.

Luckylu........AAAAARGH....I am reeling over here and in total agreement with Stacey on this one..Not trying to be bossy, but I'd get on that phone and let them know I need those supplies NOW as I cannot leave my Mom and that is THEIR responsibility....I hate that you have a nurse like that...Thank God even at the other provider our nurse was always excellent about making sure our supplies were provided...and then we discovered we were supposed to be getting a lot of other ones too, but the former provider just didn't provide those for anyone....Even if you feel it is not in your interest to change providers right now...they could definitely send a different nurse could they not??? I would want to drop kick that woman over the moon for all those indiscrepancies.. In all honesty I am overtired so forgive me if I am getting fractious...but Mama is still emoting like a freight train on crack and I am exhausted...but I actually did get my front yard all tidied up and so now our front and back looks wonderful....

I came in just knowing Mama would be napping and NOPE...wide awake...hooping and hollering...what on earth...I worry about her being awake this long but I suppose she'll go to sleep when she is tired....she keeps talking about going to a party...said there was a little party going on on her bed and did I not want to go...I told her...heck I can't even hear that little party..I don't think it's worth getting dressed to go to such a tiny party...she just laughed...it is bizarre...oh well, as long as she is happy...

I sure am exhausted.... Today one of my neighbors stopped as she was driving by the house and talked a while and apparently had left something on and when she started to leave her battery was dead...so I fetched my jumper cables and gave her a jump...there sure is a lot of stuff going on around here to never leave the house.. lol

Katie...I used to have proposed visits from out of town folks when I first moved away to my last home...It was a college town and so the football season there is huge...These were folks who never wanted to visit any other time but when a football game was going on and either the rooms were full or they were too expensive..usually the latter...They always wanted to turn my little condo into party central . I finally had enough of it and told them this was a residential community and I was not the holiday inn....Obviously they didn't like it, and I really am not friends with them now...but then we weren't that great of friends then or they would not have imposed on me that way...users...I don't need em...

I really am turning into a cranky irritable human....

Did anyone discover how much more can get done while in crsis?

Stacey my sister lives 1000 miles away but always has these little suggestions. Like they should have music outside on the patio area, or Christmas lights strung up outside. Or why don't you pick up dad and take him with you when you go run errands. All along that vein. Gets a bit annoying.
Living so far away I don't know if she feels guilty the way I do. Q

Oops. I never thought about her thanking me for what I do for dad. Well she doesn't as I do not think about it I am sure she doesn't either.
Getting the plans firmed up for my dads siblings to come to his AL in a couple of weeks. Probably the last time they will all be together.

Luckylu, Your hospice nurse does not seem to be behaving in a professional manner. Is there a social worker or supervisor at the hospice company you could talk to? Maybe they could switch you to a nurse with a better personality more suited to being a hospice worker.

Sendme2help, The visitors won't be staying here while Mom is bedridden in the guest room, but just will visit for hours at a time....still, I am so exhausted mentally from everything going on in my life that this even is too much. It is enough that I am caring for Mom 24/7 let alone preparing food, etc. for guests. Oh well, day at a time.

Hope, could Mama have a UTI going on, or do you think this is from the medication patch she was on? My Mom has had spells like this when she has had UTIs. I don't know where they get the energy to go on for so long...I get exhausted when this has happened to my Mom until it passes after a day or two...then she sleeps for a day or so..

Twin, that sounds like a nice idea to have your Dad's siblings all visit him. I hope it is a nice time for all.

Hope I know how it must of felt when your Mom said what she did about your brother. My Mom always seemed to favor the boys in the family too. Once my brother and I were both visiting Mom at the nursing home. I went to use the bathroom and overheard my Mom saying to my brother "Your the best thing that ever happened to me" Wow, that stung. Especially since he did the least to help her before and after we transitioned her to the nursing home.

He always had this smug look about him whenever he visited Mom too like he knew he could do absolutely nothing and Mom still thought the sun shone out of his ass. It burned my britches though I tell you.

Katie, at most, these guests should only stay an hour, and should be bringing YOU food and drink to give you the support you need during your crisis, and you shouldn't feel bad about asking either, there is an easy way to ask, just say that you have so much on your plate caring for your Mom and you would really Love to see them, and for them to see your Mom, but lately you are just exhausted, and could they all bring something to share as it sure would be appreciated and lighten up your load right now, and thank you ever so much for being so kind and supportive as well as thoughtful. There, just how could they decline when you are so appreciative and have poured it on so thick, lol. I imagine that most people will hopefully offer to do just that, but some people are a bit thick, but I wouldn't want anyone who wasn't understanding of your situation, comming over anyways. Hopefully it won't be a huge burden. It's hard enough that you have to clean your house and be ON, when people come over. I'm sorry you are having to go through all this just now! And it's nice to hear from you too! Let us know how Mom is doing! Love Stacey B

Hope, I can't believe she is still at it! The brain is such a complex thing, isn't it? Yes, I do think Katie had a good suggestion re possible UTI, it's great you all look out for each other on here! I'm glad you got your yard work done! You get some rest!

You know, it really pisses me off when I read about unprofessional, nasty and narcissistic hospice people. Isn't it enough your losing your loved one, tired and scared...? Lucky, you're lucky I don't live 500 miles of you as I'd drive over there and give that bitch a talking to!! Mom's hospice team would call me at 9:00 (ish) letting me what time they'd be here. The bath aides would ask me if I needed depends, pads or whatever...her nurse would call and ask if mom needed refills, more dressings, anything medically related plus the depends and pads. Heck, these ladies here had their trunks loaded with goodies for us and their other patients. You really need to either have a serious, tell it like it is conversation with that nurse or talk to her superiors. This is NOT how hospice workers are to be. Just disgraceful if you ask me...

Hope, your mom sounds like she's having a great time :)... I would bet my bottom dollar it's that patch that has her all hyped up. The elderlies systems aren't as good as they used to be and many medications do more than most realize. Remember when I'd thought my mother had a stroke and I rushed her to the ER? Well, 2 days earlier her doc said to go ahead and take her off the Exelon Patch. Swore up and down there'd be no effect on her. Yeah right. I video taped her, took it to his office and demanded he watch it. Went home, put a patch on her and within hours she was snapping out of it. I personally on gave mom what was necessary... her system was very touchy when it came to meds. When she'd go on those 36 hour marathon pacing... it would take a horse sized valium to stop her. Her brain misfiring was stronger than meds! Truly, I hope your mom snaps out of it soon.

Katie, why don't you be honest with your upcoming guests and let them know how tired you are and if they'd mind preparing some meals (if not all) ? If you think you're exhausted now, just wait till they get here... don't be a hero and try to do it all. Your health is more important than their meals.

My mom was the same when it came to the brothers. She'd tell me not to be so upset with them when I'd bitch about them not coming by for months. When they did stop by she'd fawn over them... made my stomach curl. I finally let it go...if it made her happy, well then, I had to just shut my mouth.

57twin, you take such good care of your dad and are a true blessing to him.

I was bit by a "cooking" bug...saw this fantastic recipe for stuffed cabbage that I just had to make. Well 3 hours later... I am one tuckered girl. I really enjoy cooking but it doesn't make sense for me to go through all this for just me. I'm taking 6 of them over to my only friends house for her mother ( I know call her mom too)... they were lovely to my mother. Her mom has severe COPD and is on 24/7 oxygen. Poor thing had a nightmare the other day and was trying to run away from something, fell out of her bed, landing against her walker/chair thing. Her skin is so thin it have her several gashes on her legs as well as those dark ugly bruises they get :( ...I love the elderly, don't think I am up to caregiving again but one day I might volunteer to visit those who don't get many visitors ...maybe ;)

Jeanette I have always had a soft spot in my heart for the elderly too. Whenever I see an elderly person looking frail and helpless I just want to run over and do for them.

My husband always reminds me that there are miserable old grumpy elderly people too and they aren't all angels. Which obviously I know but I have always felt a tug in my heart for old people, animals, little children.

I am SO tired. Husband has dementia. Does nothing. He has always relied on me to do everything. I was glad to help but after a while I resented it. He can set on the deck and watch me work day after day. I asked him if it bothered him at all, he said NO. No attention, no appreciation, no affection, and no conversation. I stack the wood, build the fires, take care of the car, paint the house, keep 2 acre yard up,and do all other upkeep needed to run a household. I am 77 years old and am thankful I can do the work. But once in a while I just want to set down and cry. Sorry to whine, just need to talk to someone.

Workhorse, that is what we are here for.. chat away! you sound like you have your plate full around the property!

My whine today is the lady I take care of WHINES all day long.... am I whining about someone whining??? YES....