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.
Can I have an emergency cow pattie??? I need one to splat in the face of those nurses who keep giving me conflicting info.
Last night was told uti, she didn't really look any better today, she kinda had this weird psst. Noise when she would breathe into her 0xygen and was breathing kinda fast. I missed the Dr. Today, got a call from her saying she had a stroke. But couldn't remember anything else, so I called nurses, who read her mri and told me no new stroke. They were all old ones. Said she must have heard him say that and took it as she had a new one. Said she was a little not confused but disoriented which is common for elderly from being in hospital. She said some enzymes showed up in her blood work, but they really didn't have any news as to her severe weakness. Said they were treating her chf, trying to lower her bp. I said so its prob the uti then? Nurse says she dosnt have a uti. What? That's what I was told yesterday. She said they must have just suspected that because that is the first suspicion when an elderly comes to hospital with weakness. Told me she had blood in her urine, but no bacteria. What??? Her bp is up,her oxygen is low,sugar up,pulse up. But no infection? I'm confused.
For all of you experaincing loss, extra prayers for you today... for those of you who are tired, I pray you get a nap, for those of you who are depressed, I pray for a light at the end of the tunnel.... hugs to you all this morning, and angels to help you carry your load...
EMERGENCY cow pattie on it's way to ASG!!!! Just don't hurt the nice doctor.......I think you are at the point in Aunt's care where you are going to have to bypass her to get your information. It sounds like her brain is living in the present sometimes, in the past others, and with dementia who knows which story is true? You won't get the facts from her. When she is better and back home, go to your attorney and have him/her draft a Durable Power of Attorney, have Aunt sign it, tell her this is ONLY so you can step in if she can't answer questions, and be done with it. I know we have discussed this before, but a physician doesn't need to sign one in order for it to be valid. This is making you nuts when she can't tell you what's going on.....and let's face it, you are the one who is ultimately responsible for her since she lives in your house. If it's any consolation, the night before last, 2 hours after taking the col back to the NH, she didn't remember being in the hospital, didn't remember me picking her up and taking her back, and last night when we asked her where she is, she said she was in the hospital and waiting to eat breakfast....at 8:30 at night......like we are the confused ones!
ladee......you will read this when you get home so I hope you were able to catch a nap this afternoon. I'll put my feet up for you later, how's that?
emjo......anyone heard from her? This is unusual for her not to be here........will be checking on her..........
Ro...you're working too hard sister.................
Vic and Maya and CMag have been in hiding...........
Shawna is busy making ornaments...........
Stormy..........is shopping for lots of toys............
seeme......is being a lady of leisure when Kathy leaves her alone and quits chasing her with decorations................
And of course starri is lying on a beach in CA
SDPeg..............is going to pass her finals..............
And anyone else I have failed to mention, it's not done on purpose....I can say I haven't had enough coffee yet.
So many right now are going through rough times, myself included only mine isn't so much with the anguish of dementia, and asking questions because of being tired and worn out...........can I play devil's advocate for a minute? So many want to know why siblings don't step up and lend a hand and leave all the care to one person. Sometimes I wonder just who is the smart one in this equation? After it's all said and done, the person doing the caring is broken mentally, spiritually and physically.....sometimes finances have been depleted, jobs lost or given up, homes lost or given up, friends lost, medications taken for depression and any other number of maladies. Those siblings who refused to get caught up have gone on their way with their lives intact. There comes a certain point in this aging decline where the loved one no longer even knows where they are, they don't know the care giver, they don't even know what planet they are on, the care giver is trained to catch the bodily excrement from one end or the other, we have to play nurse, doctor, psychologist, pharmacist, mind reader...........is all that going to make a difference when we are standing with our resume in hand and telling God "see what a good person I was"? Or is he going to look at us and ask "why did you do this to yourself"? I wish I could say that care giving was 100% satisfying and worth every minute.....but I would be lying...........so who really is the smart one?
Everyone on this thread is intelligent and has something worthwhile to say.......so what do you think?
Happy Trails,
Jam
e...why should you. Just step into a new role and love them, make sure the peple who are taking care of them are doing their part
And WE are the smart ones for knowing this group will hold us up when we are falling down, cheer with us when we celebrate, cry with us, laugh with us, give advice or admonition when needed. That's what makes us so intelligent. WE know WE cannot do it alone. I am thankful for this group, for this particular post, for the questions you, Jam, have posed as I will be pondering those for a while. Wonderful questions we all answer according to our own personalities, situations, and where we are in life. God bless you for posing these inquiries and ASG yes, we do deserve happiness in our lives and if that means divorce (I did that ~ was shocked by the loving support of my Catholic mom in 1979) or walking away from our responsibilities to save our own lives, I agree, we must do that knowing God and those around us who love us will not judge us and will support us.
I know I promised my Mom that I would be here for her but am I? Even when I am at home I am doing homework, watching tv, on the computer because she goes to bed early or does she go to bed early because she thinks I am too busy for her? Complicated. But to be honest, when the day comes that her doc says she wants to place her because she honestly cannot take care of herself I will be happy because my Mom deserves to live life NOT a hostage to her dreams to stay in her house. She mopes all day, goes from one room to another, sleeps all day ... that's not life. I know this last paragraph I will not be judged for by anyone in this group. I know I will be judged by sibling(s) that feel I should give up my education and stay home with my Mom as one of them said that when my Dad was ill. No one else is giving up THEIR lives and they could: one is on disability and one is close to retirement (and looking outside of CA to live ~ I agree it is expensive BUT Mom is here and needs care) and I am the only one "with a life" and I plan on keeping it.
You all are blessings more than you will ever know.
Thanks Jam for the words of encouragement to pass my finals. It has been a roller coaster ride, I hope I do well, these next two weeks will be brutal. I appreciate your kind thoughts.
Thanks for reading all of this. I hope I explained myself well. I love you all. Hugs from San Diego. SDPeg
These are my 2 cents: the smartest one are definitely the lazy siblings. But I think we can't do it otherwise: we have a sense of duty, or a sense of right and wrong, which pushes us toward certain choices in life. I have very confused ideas about God - what or who he is - but I think that if you do something good in life, even if it is irrational and maybe useless, it can't be bad for yourself and your soul!
Ladee.... I am happy you have Sonny's daughter by your side.
So for those who cannot say "no".........the only people who really understand the situation are those in a like situation? But couldn't it be said that the ones who DO say "no" understand a lot better than we do and they are not willing to give up their whole sense of "self"? Or does that make them self-absorbed and guilty of vanity? And don't we all feel "used" and "abused" when we sit without a life while those naysayers around us are living theirs? Over the past 2 years, there have been countless times I have felt used and abused...and I won't lie and say differently.
Peg......you bring up some good points......everyone has to decide for themselves what they are or are not willing to give up. And having someone say "I'm thinking of you" helps a lot...........but when you are on the 10th diaper full of pingo for the day, or answered the same questions 20 times in an hour, or stumbling from 1 hour of sleep, or just told your best friend AGAIN that you have to pass on their company, or crying on your husband's or wife's shoulder for the umpteenth time.........is that truly a blessing? Are you truly "living"? Or are you the one just existing because you couldn't say no? I'm using YOU as a general term here.....:)
After the care giving life is over can anyone honestly say they never, not one time, resented the choice they made or the choice they were stuck with? I don't know about the rest of you, but my parents did not raise me with the knowledge and intent to be their care giver. I suppose you could say that is a moot point, since both of my parents voluntarily placed themselves in homes. Those who are trained in the care of the elderly can do just as good a job as we can, or can they? Or do they make the rest of us look like inept buffoons? Does it really make a difference to the care "receiver" where they are when they are so far advanced that one place is the same as another? Does there ever come a time when you finally say no? Or do outside influences "shame" us into thinking it's okay to lose ourselves? And at what price? So many lose time with children that can never be regained, some suffer physical injuries, marriages suffer, careers put on hold or lost completely...........when does it become "ok"?
Happy Trails,
Jam
My wife shared with me what one book says about codependency.
There are two types. First are the narcistic (takers) who demands that we only meet their needs and without us doing so, they will not be happy for their needs are more important than yours. Sound like anyone's parents?
Second are the care giving codependents who need to be loved or feel needed to feel good about themselves or feel happy to the extreme that their own needs are not important. I hear this from folks who say they are now trying to get their mom to be the loving mom they never were by showing them a lot of love in their old age. Sound like anyone we know?
I think there is a possible question beneath your questions, Jam, that is the title of a book Must I give up me to be loved by God? I don't think so nor do I think God will shame us by asking why did you destroy yourself? Then, I think as Revelation 21:4 puts it every tear will be wiped away.
However, I could see God asking some now why are they destroying ourselves out of loving conviction. Such a question serves no purpose at the end though in my opinion, plus getting to heaven is not a matter of our works anyhow for we cannot earn God's love, but we can experience it as a free gift of his grace in Jesus Christ whose birth we celebrate at Christmas.
And as I think I've said often on several threads, I don't think God expects anyone to leave their spouse and children in order to cleave to their elderly parent until death do they part. As adults we can always change our minds about the promises that we made in the past when we did not really know just how hard taking care of some elderly parents can be. Yes, we are to be responsible for their safety and care, but that does not mean we have to do it all personally ourselves.
Anyhow, as the apostle Paul said somewhere in the NT, our present trials are nothing compared to the glory yet before us (my paraphrase).
I don't know if I should close this with happy trails or happy trials?
SDPeg, I love your post and wish you well in your finals.
Ok, enough preaching to the choir for today. I'll return to my cave and hibernate some more. :) (not really) BTW, our kitchen roof leaked one ___ more time and it poured in this time. The roofing people will fix it again at their expense. I'm ready for something to be completed and fixed for so many other things remain up in the air so to speak.
Welcome to the newbies - caregiving is such a hard task - lots of frustrations, concerns, and just plain hard work.
jam -awesome questions and post. -think there are lots of answers already. The balance between caring for a senior, and caring for self, and possibly family is a very difficult one that we all wrestle with. Often the options seem to be very limited. My view tends towards what cmag has written. I would not want my family sacrificing themseves for me. In fact, my assessment is that neither my daughter and family, nor my sons and dils are suited for such a task and I would not expect if from them Simply put, it wouldn't work. I don't care for the picture of the needs of some one, or a family being sacrificed to the needs of a sick elder or other individual. I think the job is a huge one, and not many have all the required skills, including those needed to maintain their own physical and mental health. My sig other has frail parents aged, 84 and 88, and they already have decided where they will go when they cannot live in their own home any more, and/or one of them dies. My mother is in the ALF of her choice. Fortunately there is no dementia, (perhaps a little with my mum at age 99) and their physical health permits them to live pretty independently. Not all are so fortunate, I know. It is a complex issue and each family has to find their way through it. My sib does very little for mother and her health is better than mine - works for her, I guess. If I was run over by a bus tomorrow, mother and my sis would manage I am sure - somehow.
take care everyone and that means you
Have a good night .
love, hugs and prayers ♥♥♥
jo
Thanks for all the responses and encouragement. Means a lot - really.
I wrote something more substantial earlier but somehow the wrong combo of keystrokes during editing/deleting caused a browser refresh and complete loss of message. From now on the second I go over a paragraph on ANY message site I will switch over to a text editor on another monitor. Duh.
Anyway, I am thinking of starting a topic, "Judge my sister...PLEASE!" just to see what somewhat unbiased strangers think of her behavior after hearing all the facts. I certainly know what * I * think.
Also want to discuss the hospice anguish I had because despite their claims to the contrary, they DO hasten death. Which may ultimately be justifiable, but still needs to be stated explicitly. Just for now, I'll say emphatically that if I had known how they operate, I would definitely not have given up on the in-home care so quickly after she came out of the hospital. I will expand on this in my next message.
Bye for now,
Ish
Just a quick check-in, then bed.
emjo....good to hear from you....been worried about you. So sorry you haven't been feeling well.
CMag...........frustrating about the roof leak AGAIN....I hope they get it repaired correctly this time. Your comments bring up other questions also.....are there those who use their time as care givers simply to try and make up for what was missing from their lives or relationship(s) with their parent? Do they refrain from saying "no" simply because they think that parent will now love them the way they want to be loved or never were and think it will be different now? Does that contribute to some of the horrible grief some experience after the passing of their loved one, because they weren't able to accomplish their goal? Or is it simply total, encompassing exhaustion from losing oneself to the years of care giving? And how much does anger and resentment add to that? Is that where the guilt arises from when one finally stands up and says no, no more, if there is still some sense of self-worth left to salvage? I have to agree with others here, for myself I choose to not burden my family with the task of caring for me.....lessons learned? When I am no longer able to care for myself, then my mental status will be such that I won't know where I am or who is taking care of me....and I don't want my family to spend years being resentful because they wouldn't bring themselves to say no. That is what I am doing now for them.
Welcome Mamasfriend...........must find a nickname for you! I am so sorry that things are rough with your mother. That's got to be tough when you are breaking your back to care for her only to have her non-compliant and mad at you. Makes it hard to do what needs to be done. And yes, it's very difficult some days to keep from shouting back in anger and keep your words civil. Are you able to take breaks and get out of the house alone? Do you have help that can give you some time to yourself? That is so important in care giving. We have been discussing the effects of care giving and the feelings when siblings don't step up and help. This is the place to come when you need to talk, or vent or throw things. We all know what you are feeling. So come back and visit with us.......we'll leave the light on.
Happy Trails,
Jam
Let me take one question at a time.
Are there those who use their time as care givers simply to try and make up for what was missing from their lives or relationship(s) with their parent?
I think some are and some on this site have even gone so far as to say that is what they are doing.
Do they refrain from saying "no" simply because they think that parent will now love them the way they want to be loved or never were and think it will be different now?
Some do like stated above.
Does that contribute to some of the horrible grief some experience after the passing of their loved one, because they weren't able to accomplish their goal?
I would think so.
Or is it simply total, encompassing exhaustion from losing oneself to the years of care giving?
That too.
And how much does anger and resentment add to that?
I would imagine so.
Is that where the guilt arises from when one finally stands up and says no, no more, if there is still some sense of self-worth left to salvage?
Indeed and it is irrational, false guilt, but often programmed by Fear, Obligation and Guilt via the parent's training.
My wife and I don't want to be a burden to our sons either. My wife and I have plans for when that time comes.
I will speak from my experience of being one of the ugly sibs who said 'no'... but there is more to the story... no, I would not sacrifice my life for my dad. But I had also had many years of therapy behind that man, so I knew my limitations, my sisters on the other hand, were still 'needing' something from him that we was incapable of giving... what they didn't know, and to this day refuse to acknowledge is how many times I DID tend to him... he choose to go into AL, but there were still Dr's appt's, personal shopping, ect... Many times I stepped up and did these things, not out of guilt, or toxic shame, and they never knew about any of it... My dad was one to play all against each other, the more drama the better for him.... my point being, I did what I could, what I chose to do and did not need the sisters to ask, or to give me grief if I couldn't.... the oldest one insisted things be done HER way. For instance. My dad was a big man, tall, not fat... getting him to and from the Dr. was an ordeal, the loading and unloading... I made the suggestion to my sister we call the company that assists elders to and from the Dr. They load them up in a lift, and then we could meet him at the Dr's office... she would have no part of it and never really had an explanation as to why not.... so guess what... she got to wrestle him and the chair. If it was that important for her to be in charge , or whatever she was doing, then go ahead.... many examples of this kind of stupid power struggle.....SHE took on that job, wouldn't listen to any suggestions to make it easier, less demanding.... but would get so angry at me for not doing it her way.... how energy draining the whole thing was....So family dynamics play a huge role in the why some sibs do not take part.... I am not lazy, or irresponsible, or selfish, or self serving, the bottom line is wasn't worth the heartache of her telling me once again everything she didn;t like about me...None of it had a damned thing to do with dad... it was just a platform for her to be a martyr. The day of my dads funeral, in all her long suffering, took my bil to the Dr, when other family members had suggested she change the appt, and her son said he would take him,,, but Nooooo... so that was about her, not me....
So from standing on this side of the fence it always amazes me when a caregiver wastes so much energy being angry and resentful that others don't help, when they also choose to ignore other possibilities or suggestions. Like ASG said, sometimes you change your job description, make sure those that are caring for them are doing a good job...
But many go into this job clueless. We are not Dr's, nurses, etc.. in any other JOB, a person would educate themselves about said job, get training, and find resources.... But they get in over their heads and then won't do anything to change the situation...I guess I look at it like if I was hungry I would figure out a way to get food.....same with overburdened caregivers. My sister had resources she refused to use.. so whose problem is that, not mine....and when she couldn't make me "bad and wrong" then she cried that she never got any help...
And I know there are sibs out there that wouldn't help under any circustances... different dynamics there....
And the irony here, I am a paid caregiver... so there may be a possibility I knew what I was talking about but my sister wouldn't allow it to be done but one way, and her way wasn't working for me.....
I am the one that gets called in to take up the slack, to do the scut work the family can't or won't do....yet I watch my present charges daughter run herself crazy. Why? Not my job to get into the family dynamics.... but it is serving her some kind of purpose or she wouldn't be doing it...
Every one of us do things because we get a 'pay off' from it... positive or negative, there is a payoff....my sister got to be the long suffering martyr, than no one appreciated, blah blah blah.... that is her life story, but it isn't mine.... I would tell her she couldn't make me feel guilty for NOT feeling guilty.....
I read posts all over this sight, my mom was not a good mom(whatever that means to that person) BUT I am taking care of her, and then all the complaints on how the elder is upsetting their lives....and I know it is not a black and white situation nor does it have black and white answers.... or I read about caregivers that have all kinds of help for their elder and then make it sound like they are doing all the work.... and resenting every minute of it.... like I said, we all do things because there is a payoff.... good or bad, right or wrong....
But then we are provided with the blessings of this sight, where we can get together and talk about things, cry , laugh, and bitch and complain... and have great conversations like this one....Thanks Jam, for opening the topic and allowing each of us to have our say.....in my case, the sib war was going on a loooong time before dad needed care..... and my sisters do not speak to me to this day, why, because I chose not to continue the fight, I let them do it their way, and they are still angry... so from where I am setting, it appears they need to be angry about something or someone, and TAG, I'm it.....That's fine with me. I know what I did, and what I didn't do, and I know why.... I only have one source I answer to, and it's not them......
So, I have a lot of catching up to do. I've read some posts and must say, the recent conversation has been insightful. I can see myself and my sibs in many of the posts. Though my situation is a Long Distance arrangement for the moment, Mom lives closer to 2 other sibs (brothers) who act like I'm exaggerating or intruding when I call to bring them up to speed with Mom's symptoms and behavior.
The Friday after Thanksgiving, Mom fell. I wasn't there and she refused to let them put ice on her bumped up knee (at 9:30 am). Hubby and I arrived at 2:30 pm and they reluctantly told me what happened. I insisted on seeing the knee which was, at this time, swollen to the size of a tennis ball! I insisted we put ice on it. After 20 minutes, we rexamined the knee and I suggested she should have it looked at.
I'll spare you the gory details...but I won. We took her to the ER. (a 4 plus hour visit) What I don't understand is WHY didn't these 4 plus adults do something earlier? Mom is on blood thinners and other meds. The ER doc was surprised it took so long to get her there. (Of course, he's had never met Mom before and doesn't know how stubborn she can be!)
The good news, no major damage. Of course, my nerves were shot and it ruined our time to visit with my son and grand daughter. But, Mom was attended to.
I don't resent Mom. I do get angry with the sibs who do not attempt to take proper care, to put themselves out to care for her. But, as others have said, this is MY decision. I don't feel special or better than them, and I make no bones about saying mom can't come live with me. I have the right to make that decision.
But I will do whatever I can to help make sure she has the best quality of life she will accept until she no long is in a position to decide what that is. Then, I will make sure she has the best possible care for the rest of her life.
It's a long road ahead for some of us. We can do it, friends. None of us is immune to the sadness, depression, exhaustion and frustration. But we can find unlimited friendship and support right here
Take care..I hope you have some peace and rest tonight.
Hugs. BEE
People that goes to that place are octogetarians with disabilitys.