This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Similar problem here tonight. Had to take mom to ER, turned out she has a bowel obstruction. For 50-60 years she has had chronic diarrhea. What a change :-O She was admitted and they, right now at least, don't think will require surgery.
His female friend told baby bro that we need to do this more - inviting me with them. I would like that. Free food. =) sigh... baby bro has eaten in more restaurants that I have never gone to. I would have loved to tag along and try the different restaurants. {envy}
As for father, when I got up from my nap, I saw that he had his nutrient drink but there were no pills. So I asked him why he was drinking his nutrient and it's not yet dinnertime, 530pm. He told me in a very soft lost voice, with this lost look in his eyes, "I don't know what to do. I can't remember what to do." He was holding his nutrient drink and looked so lost. I felt so bad for him. He knows that he usually takes something (herbal supplements) with that nutrient drink but can't remember what.
Wanting, I'd say your feelings are perfectly normal. Watching someone decline on the slow ride to hell that is Alz and dementia isn't for the faint of heart. Just thinking about what my mom went through and what I went through with her, watching it all up close and personal , makes my blood pressure rise even now. Nothing and no one can prepare you for Alz or dementia. Absolutely nothing.
And Glad, I'm so sorry! I hope your mom will be well, and feeling much better very soon. I'm sure that had to be uncomfortable as hell for her. Here's hoping that the issue is resolved quickly and your mom is back to normal very soon! *hugs* I know you'll be relieved.
Take care of YOU everyone...
Wanting, There is nothing awful about praying for peace for your loved one. I am not sure that everyone is prepared for childbirth. I think we are blessed with memory erasure when we enjpy our newborn. Makes it all worthwhile.
SA what I think you are describing is PTSD. For years after I retiredI I jumped ten feet everytime the phone rang. That old fear about being faced with an unknown situation rose quickly to the fore. Like everything else time has healed.
Have tried four different times to post and get bumped... so hope it works this time.....
I thought I did post this week.... hmmm, dreaming or not enough sleep... lol
L can be a hoot sometimes.... some of the things she says makes me laugh out loud... except for this..... I was putting analgesic rub on her knees before bed.... she looks over at her husband and says, " she is a really good rubber, be careful about what YOU need rubbed"...... I almost died!!!! and not died laughing.... I stuttered and stammered and said something stupid like, not part of my job description.... flash backs to C and her evilness !!! Still a little jumpy about comments like that.... lol
I am still getting used to the hours.... but have two days off, in a row folks.... woot woot.... best thing to ever happen to me was to be accused of something vile to make me leave my last job....
But nothing is perfect... the day time coworker, well, I call her the Caregiver Nazi.....in her mind she is VERY IMPORTANT... so have listened to all her ramblings about her education.... this was the topper.... told me she has a Masters degree in Psychology... hmmmm, I didn't say anything, but was thinking, and you are working for these wages???? I do not volunteer anything about myself... to her or the family.... if they ask questions, the family anyway, I answer... to her.... well, lets say 'mumble , doubletalk and avoidance' works with her.....
Seems she is wanting my night shift.... not going to happen... and if the oldest daughter knew how much bitching she does about days, she would fire her in a heartbeat.... but I stay out of it....none of my business....I want to tell her what a REAL caregiver does on the day shift..... she makes me tired....
We keep a log... so all night time activity is in there... I give her the short version and then leave.... she wants to talk..... uhhhh, no, 12 hours here is enough thank you... I don't say any of that to her.... seems she will call oldest daughter about anything that is said....so, the fly in the ointment... no problem... I just worked for the family from hell, she can't hold a candle to that chaos.... so I just leave.....
I'm lovin' my new attitude about so many things at this job.... who would have thought I would ever add C to my gratitude list....by teaching me all the things I WILL NOT DO OR PUT UP WITH AGAIN.......
Going to do some yard work today.... hope the sun comes out.... need some serious 'outside' time..... sending all of you hugs...... will check back in later...
SA - Sometimesw it would get soo bad I would get in my car and scream. Go DO IT it will make you feel better. I agree with Veronica too. Let them run out of food, TP and the like. They can get it on their own, don't they have money. Also, let Dylan feed the cat. Do not be so hard on yourself about the Dog. My cat was matted in places and I did not have time to take good care of her. I felt soo bad but now she is happy as a kitten, I think she forgave me. Now she is taking advantage of having me by herself. Take of YOU!!!!
Red - I am so glad that you got a good nights sleep. Take care of YOU!!
Kizna - I am sorry that your Mom is being hard on the decisions. Mom was like this. I think it is because she was trying to hang on to any control she could get. My mom did that and now I have to share with my brother the money I am getting for the house, her bank accounts and anything else he can get his hands on. Whatever you have to do DO IT! take care of YOU!!!
Assand - Good for you. Enjoy!!! Take care of YOU!!!
Hi everyone - Well, I have been working my you know what again. I have been sooo upset about how things are here. Bro and I are now equal partners in my mom's estate. BOOOOO!!!!! He was supposed to give me all the money in my moms checking account. Well, there was more in there than we thought. So he took half of that. I have to use that money to pay bills. He is going to take anything he can get his hands on. My mom should have made me executer for her estate so now I have to put up with him. I had to quit working to take care of her and now look at me. I am selling things out of the house like china and things like that. I am pocketing the money and not letting him have anyting. If he has a problem with this he can sue me. I get mad at mom and cuss her out every now and then. I am also thinking that maybe I should charge the estate for my caring for Mom. What do you think about $5000.00 for three years. I think I will. I have been doing work outside and inside getting the house ready for a realtor open house. Please wish me luck.
$5,000 a year is only $13.00 and change a day. What you have done is worth much more than that!!!
I just found out lastnight that sis have been giving him Centrum for dinner. I'm so pissed off. I told her that Centrum is for breakfast. She's suppose to be giving him his Caltrate. She just gives in to everything he wants. And NO, everyone, I will NOT confiscate all these pills and dole it out for OLDEST sis (older by 12 years from me) to give to father. She Knows Better. I have enough stress in my life, my caregiving life, and my work life to now also include HERS. Father says I'm F***king up in my job (taking care of his every whim). My job, my foot!
I told bro my prescription pills I'm taking. He said that's for the heart. I said, yes. I'm a high risk candidate for a heart attack. I know. I'm just ... I just live each day as it comes. I don't look into the future because for me, I see darkness and that always seems to bring on my depressions. So, today is what I live for. I do take my pills when I remember to take it - every other day. But, I have been eating oatmeal to help lower my LDL.
Rule #1 in caregiving is "take care of YOU" You can't mess around with prescription medications, they don't do you any good if you only take them when you remember. they are prescribed so you have a constant level in your blood. Get yourself a med box and fill it up each week and put it somewhere you will see it like beside the coffee pot. Oatmeal is a good start. Make a list for oldest sis for Dad's meds and leave her to it. It's time she did something to earn her keep. I am high risk for stroke and make sure I take my meds. My cardiologist said I must have has rheumatic fever as a child because of the damage to my heart.
With mom's one year anniversary coming up on Wednesday, I now have to really clean the livingroom (for visitors) and the bathroom. I will do the bathroom today. On Wednesday, I will just do the surface cleaning on the livingroom. It is what it is.
I'm dreading meeting with mom's relatives. It seems I touched their hearts last year when mom died. I felt soooo bad that mom died on my watch. At the morgue, the night mom died, I asked one of my aunty (likes to be in the driver's seat) if she blames me for mom dying. She was shocked that I asked her that question. And she gave me this great big bear hug and told me over and over that it's not my fault that mom finally died - on my watch. I remembered having tears when she said this because I really did think I didn't do my best to keep her alive like when father was her main caregiver.
{{laughing}} baby bro trying to do whatever father wants. Dad getting mad at him because he's not doing it "right." I couldn't help it. I started laughing so hard. I told bro that he needs to follow dad's fingers. He said in frustration that how can he follow it when it keeps shaking! Then I said, "I told you. You have to learn to read his mind!" He sassed me back that he can't read minds. Ah, heck, I really need to stop laughing every time father gets mad at him. Although, it's better him than me! =)
About three oclock she came into the kitchen, and just stood there. She was unresponsive to me, and seemed very out of it. She said I'm dizzy..then sat down. I asked her if she would split an orange with me. She didn't respond so I peeled one and gave her a half. She started eating it like an apple instead of seperating into sections like you normally would.
I asked her when she tested her blood sugar last and she said "I don't know"...I got her machine and took her blood sugar for her..she wouldn't even stick her finger, I had to for the first time, she wouldn't even wipe the blood off, she just sat there looking at her hand.
her blood sugar was 46.
I gave her everything I could think of that had sugar in it...COke, Hershey Kisses, some sherbert, she started coming out of it and managed to eat some soup. half an hour later her blood sugar was up to 55, an hour later it was 164.
scary
What if I had not been here? I am going to have to start being really assertive with her...and that's gonna be a fight.
she remembers this but not that, it's completely random...I need to take her car keys, I need to take over her meds but she is going to fight me like a wildcat...
Is it tradition where you live that family gathers on the anniversary of a loved one's death? I imagine that would be helpful. Just curious as I have not heard of that here. What are the traditions that go along with the gathering such as food served, etc. if you don't mind me being nosy. It's just interesting to me to learn about the world outside my snowbanks. :)
I loved hearing about the lizards. Oh my! I've been to Florida a few times and the chameleons were everywhere outdoors. I can see how a few could make their way indoors. I find them fascinating. Had a few as pets when I was a child. Maybe that started my frog interest. We have tree frogs all over our deck in the summer, yes, even in this climate. Not too mention Homer who lived in our basement plants last winter. Makes me giggle that bro is skeeved out by them. Hee!
I can see why you have an issue with meds. You're exhausted dealing with your dad's obsession with them. That has to make you more than a little ticked off about pills, even ones your doctor has prescribed for you. Please book, I want you to follow your doc's advice and keep that apart from your dad's weirdness on the issue. We need you here and love you and are concerned for you.
Sparky's been in a bit of a narcotic haze for the past couple of days with a Fentanyl 25 mcg patch on his shaved back. No more pain and he can sleep. Yay! Antibiotics were injected into the fat layer to slow release to combat the infection and his face is 'almost' back to normal except for the incision site which we have to drain. It has slowed waaaay down. Can't wait to get the patch off on Monday and get him back to his puppy personality.
I hear fentanyl can be terribly addicting though. He may well be on the corner on Monday trying to score a patch from passing dogs. LOL!
Seriously, thank you friends for all the good words, advice and comfort knowing you are there and it's not all old people all the time. We're multi-faceted individuals with things going on while "at the same time" taking on a huge job.
Bless each and every one of you. I'd steal LadeeM's hugs and chocolate, but I'd rather, er, um, not! Congrats Linda on the raise and time off. You earned it, big time! :)
it was a rough one for her last night as well. They had to pump her stomach to relieve the pressure on the intestine. Sometime during the night she pulled it out. So, she got to go through the reinsertion of the tube. She screamed bloody murder with the first one in the ER. She then pulled out the second one as well. At that point they decided to leave it out. And things seem to be moving down there, will try her on solid food tomorrow. I left the room for 15-20 minutes early this afternoon for some air, told nurses I was going out for a bit. During that time mom pulled out her IV and started roaming the halls trying to figure out where she was. Got her back to bed easily enough. Left again to come home for some dinner, to check on her hubby and walk the dog. Again she pulled out the IV and was extremely despondent when I got back with two nurses trying to coax her back to bed. Phew I am freaking exhausted!
Hospital just called to ask me if mom is still DNR, brilliant POA sis was life saving measures administered on one form she filled out today, but on the MOST form, let things happen with comfort measures only. Can anybody believe it?! It is absolutely par for the course around here. I wonder about competency of sis, quite frankly.
Windy, thanks. Every year, as Catholics (not me), my family will now do the 9-days rosary (or Mass of Intentions - with regards to mom) until the day she died. March 19th. Every night, my relatives will go to the church to attend that Mass. On the last night, when mom died, after Mass, the immediate family (us) will invite all friends/relatives and put it on the newspaper Obituary section of the date of the last night of Mass and invite them to dinner afterwards. So, dinner is NOT finger food. We will be having rice, fried chicken, different meat like spare ribs, short ribs, potato salad, etc... We will be serving bottled water, Capri Sun (for the children) and sodas - in styrofoam coolers. I never really understood why the family must feed the people. When mom died, the cost of obituary was $1800.00. That's not yet including paying the priest, the coffin, etc.... And on top of that, before the funeral mass, we pay for catering so that we feed the non-family mourners. So, by the end, we have so much expenses of the funeral and the catering. But, it is what it is.
FYI, when my fave sis lost her unborn child (waiting for the baby to drop), on the day of her funeral, her boyfriend's family criticized that we served finger food. So what?! If they want real food, go to a darn restaurant. Anyway, it was their son who shot sis and killed the baby. Who were they to complain that the food was finger food and that the baby's coffin was so plain and we didn't have enough flowers?! It's all on "looking good" in the eyes of people who come to show their respect. The more, the better. We didn't care what other people thought of it. If they didn't like it, then they should have came forward and offered to help pay for the coffin, and the funeral costs or buy the flower bouquets. No offers, then, so be it. Just don't compare and complain. We didn't tell sis that HIS side of the family were making disparaging remarks. Unfortunately, Windy, having a funeral and anniversaries is like a competition of "keeping up with the Jones." That's why father said NO to the rosaries. He said that why should he feed all these people who come to mom's rosary just for the food. (By the way, it is no longer finger food. It has gravitated to solid food that costs money to feed people every night for 9 nights.) So, when mom died, everyone asked me. I said that I'm not a Catholic, so I have no say about the rosaries. But, I do know that father, who is mom's husband, said no rosaries. And that was that. So, instead, they have the Mass of Intentions.
I'm just so glad that I'm not a Catholic. When mom passed away last year, my aunty (loves to be in the driver's seat), went up to each of my siblings and said, "You and you are going to carry the ????" During mass, there is a couple of people who will carry the candle and something to the priest. Everyone watches them as they slowly walk up to the priest, bow (curtsy?) and then proceed up to the priest. Fave sis hid the whole 12 nights from the aunties. Sis was so angry and stressed over this. She said that mom died and here she is stressing over being ordered to do this when she should be mourning mom. She got so stressed, that several nights in a row, she literally made herself sick. Sis is the type who goes to places, sits down, and will not mingle with people. One other aunty had the nerve to Order me to say the rosary for grandma (not ask but order). I said no. She said yes. I said no. She said yes even more firmly. I was soooo pissed off, I told her that I'm not a Catholic and I'm not saying any rosaries. That was the last time I ever attended grandma's rosary. I never again went to any of my close relatives rosaries. It's very stressful, these rosaries, especially when the relatives want to show off that their own family members can do the rosaries (and no need to hire the expert.)
Just sounds like a huge contest and free food to get everyone to come.
maybe you should drop a note to Pope Francis and see what he thinks about all this.
Of course Mom died on your watch, that was the way she wanted it. She knew your calming touch and loving ways and those were the last hands she wanted to feel in this life. Why don't you and fav sis and baby bro have your own anniversary for Mom. Visit the grave share memories and leave a simple bunch of her favorite flowers then all go and enjoy an interesting meal somewhere you have never been. It is good to make new traditions when you don't agree with the old.
Just a note on Dad's skin. Are you still keeping him well lubricated? that will make it far easier and less uncomfortable for him. Ask the pharmacist about a good barrier cream.
People, I crave solitude. Quiet. Tranquility. Normally, I get that when I'm completely alone. I can get into my own mind and just...think...already. I can not seem to get anyone to understand that about me. There are times in my life when I'm going to feel a need for complete and utter solitude, with no pressure, no demands, no stress, no worries, no nothing. Just Peace. That kind of behavior on my part is seen as very strange to my neighbor. The way she was talking to me, you'd think I'd grown horns in front of her eyes. She now knows that all is NOT well with me, to put it mildly.
I hated having to explain something so personal, this dark place I'm in sometimes and this need I have to be...away from people. I don't think Rhonda could possibly ever understand any of this.
Rhonda wants, and I suspect, expects, me to go to church most, if not every, Sunday. I can't do it. There are times when I'm too mentally tired for even God, sad to say. Actually, in these times, God carries me. He's there all the way and he gets it. I know this. I'm not sure Rhonda understands it.
I don't have to sit in a church, any church, or do or say or act any specific way. When I'm completely alone, then I can be completely myself with God. I guess what I was trying to tell Rhonda was to not have expectations concerning me as far as church goes. There are times I don't appreciate pressure and this is one of those times. I'm really not good friendship material. I am and can be a good friend, but I like to disappear sometimes, go away, chill out, unwind and just THINK on my own, without any kind of pressure at all to do anything else. I want to listen to the sound of early morning birds. I want to putter around in my new plants. I want to drink a cup of tea doing no more than watching the geese on the lake and listen to their honking....and that's it. That's what I need, what I want, what I crave. It's like now and again my brain needs a freaking vacation.
I guess what I was really trying to tell Rhonda, but trying to be diplomatic, but ending up babbling like a fool instead, was 'leave me alone sometimes'. Not all the time, just sometimes. It's nothing personal. It's nothing anyone did or said. There's no situation. And I seem to feel the need to babble on about it, trying somehow to tell my friend and neighbor that I'm not the best candidate for close friendship....friendship, yes, close friendship, no.
People would probably call this some kind of depression. It's not. When I get the solitude that I require, it recharges my batteries, I LIKE the quiet, I ENJOY the lack of expectations on me by anybody, I LOVE being alone sometimes....and I consider it a very good thing and look forward to it. I'm certainly not depressed thinking about it. I am depressed when I have to try and explain to people that try and get close to me that sometimes there is no getting close to me. Then they think they offended me somehow and I have to get into more and more detail about why it's really NOT personal, but that I'm a weirdo that feels an irresistible call, a longing for, an absolute NEED for ....silence and solitude and that no, I really don't want to do a damn thing with or for anybody. How do you explain to anyone that there will be times you don't answer the phone, but no, nothings wrong. There will be times when you seem to disappear off the planet for all you're seen and heard from, at least for a few days or so...
I'm so babbling...
I like Rhonda's church. It's a good place, people do good things. But for me, it's more like a social club. At least, that's what it feels like. They do a ton of good works, no doubt. They travel all over bringing the Word to people all over the world. They help all kinds of people that are in all kinds of deep trouble. They talk about how much it costs and how much they spend on this and that... The first time I ever went to the church, expecting to hear some revelations about God, the whole taped sermon was about the importance of giving up part of your paycheck to God because it's considered mana and it rightfully belongs to God and keeping or withholding what belongs by right to God isn't a good thing...and so on.... I sat there the whole time feeling like I was being brainwashed. It wasn't a good feeling.
I guess what it boils down to is that even though I don't sense anything evil about Rhonda's church, no major bad vibes, there's just not enough GOD in that church for me. Simple as that. It's like they're gotten so wrapped up in spending money doing good works that they've kind of put God himself on the back burner. That's just me though. But that's what I've come away with every single time. They're a bunch of good people, doing all kinds of good things worldwide, which is great....but how do I tell my Godly neighbor, whose always talking to me about what it means to be a Christian and is pretty much an expert on the matter, that I feel, this nobody, this non expert on Christian matters, that her church is lacking in God himself? I made a mess of it. I didn't know how to tell her what I'm thinking, so I babbled like crazy...just like I'm doing now... I'll go to church with Rhonda now and again, but this isn't the church that I belong to totally and I know this... There's a church in my own mind. I have my own, weird, strange, relationship with God. That's how I like it most of the time. How simple is that? Yet...how the hell do you explain all this to your neighbor? That you want to be friends, yeah, but that you're a weirdo with weird thoughts and you need to be alone with them now and again... If there's anything my neighbors ever need, I'll always be there. But as much as I love them, I don't want them up close and personal all the time. Not now. Not yet. Maybe not ever. I just hope people that get to know me can accept this aspect of me, but most people don't understand it, and I get that.
Again, it is so kind of you to respond. THank you.
Nothing wrong with it at all, you don't have to make excuses. Try to not explain, a simple, "I need some down time!" is enough. No one has a right to your time and energy!
I hope your mom is doing much better. It is very scary to have to witness some of what your parents go through and what you go through with them. It's hard watching them decline, it's hard seeing some new weakness, it's hard to see them struggle all the time, the whole damn thing is just hard on so many levels. I understand that decline and death are a part of life. What I have a hard time with is the indignity of it. Thank God for care takers like the ones here, that give a damn and try and preserve as much of that dignity as we can. Even if parents don't appreciate what they've got, know that we're all really good guardians and protectors and we do a damn good job and thank God for every single one of us. The world would be even more F'ed up without us. :D lol