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.
ASG... I am so sorry things got so crazy for you with Auntie... i know you were looking forward to time with the kids. and it is going to be so hard on you physically. will hubby be around to help you with her???? love and hugs to you
Ro, sounds like you have some tense work ahead.... are you ok otherwise???
Seeme , hope you are doing as well as you can, the holidays will be over soon, and hopefully some light at the end of the tunnel for you....
emjo, are you staying warm, how are all the aches and pains..hope G gets to be home some so you two can spend some time together????
hugs and love to ya'll today... gonna be rainy(thank God) and getting a little colder here, so just a day to be a bum.... hugs and angels...
I love you all, I have to work.... No Xmas respite for me either! I have a hell of a movie to translate. As soon as I have finished I will write some more.
jo
asg - that's funny, girl - to heck with the relatives - what do they know. Thanks for the reassurance about Gordie -we knew what we had to do - hope auntie is on the mend
ishmael - know you are in the midst of making arrangements- and dealing with the feelings - let us know how everything is going and how you are - think you will need some down time - many of us will be happy to comment on sis I think and hospice
sdpeg - good luck with the end of term and also with convincing your sibs about your mum - just adds to the load doesn't -it is good to remember that we do make choices. Glad the paxil is helping. I think my mum would benefit but she won't take anything like that.Cultural sensitivity - difficult. I carry treaty card and understand some of the issues from the native side.
shawna - sounds like you are doing very well - hope Christmas sales are good -fibro is better these days
seeme - this will be a tough season for you, but the puppies will help - 3 months after seems to be a hard time,then 6 months and especially 9 months (((((hugs))))
vic -thinking of you -how's dad?
bee - good to hear from you and glad you had some good family time -sibs again and denial!!! and extra work for you
cmag - hope you roof is fixed for good this time how frustrating!
barbsvineyard - you have sung the caregiver's song - exhausted, overwhenlmed, isolated, and unhelpful sibs -glad your mum still has her marbles. Seems sometimes for need for a change to be recognized something like a fall has to happen and in the meanwhile it is a waiting game - check back in and let us know how it is going
stormy - any results from the ct scan? hope you are feeling better
ladee - how is sonny? - that BP was pretty low -good post about you and your sibs - coming from a dysfunctional family changes quite a few things - my sib issues were there all along -from my earliest memories and mother pitted us one against the other -stilll tries to -it is the nature of the BPD -enjoy the rain
sherrie - holidays are stressful - have you found out anything about being paid as a caregiver?
ros - hope things are rolling along OK and no more money for the gov't for a while
mis - snow - yay!!! Ours was melting yesterday, but not for long - Hope your cold is better - tis the season...
lindy -does your mum have alz? or a stroke might account for crying - frustration too
mamasfriend - was your mum always like that? mine has had a temper all her life and you can't win with her Hope you get sometime away for yourself - it is so stressful. How long do you think you can do this?
milder weather here these days - meaning around freezing, but supposed to be dropping again in a week. Renters moving out -it is taking a while but happening. Planning a trip to Etown and will take mother out for a meal. Better to go early for a visit as last Christrmas she said everyone came at the same time and it was too much for her. G will come with me. Hopefully I will get a few other things done too. Had a great chat last night with a girlfriend of 40 + yrs who knows my family - hope to see her too.
Wishing everyone a good day! I am going to tackle going downtown again to Sears to pick up a parcel - 15 people in the lineup yesterday and the traffic getting bad so I left ;( and I will go earlier today. Starting to feel decent again and think the fibro is related to delated reaction food allergies -something else to work on
love. hugs and prayers♥♥♥
jo
My sisters, Kathy and hubby were at the hospice center when the funeral home came to pick up her body. The representative handed me a red rose (which is entwined into their logo). I barely remember as we were all still crying. One sister we call Debbie "Martha" grabbed it from me and then decided to give it to my hubby. She told him to hang it upside down to dry and the color would not fade. Unbeknownst to me, that is exactly what he did, and it had been hanging in his shop upside down until the Friday after Thanksgiving. He saw me shed a few tears on Thanksgiving, so he got up early and went into his shop to get the rose. I was still lying in bed and he quietly came in the room and reminded me of it. He pulled it from behind his back.....and it was GORGEOUS!! The color had not faded ONE LITTLE BIT. The leaves were not brown or even wilted and the rose was still in a barely opened bud!! I know I smiled, and he brought it closer for me to sniff, but I didn't smell anything, so I reached out one finger to touch the bud...........and it was SILK...............he tried to dry a plastic flower!!!!!!! HAHAHAHAHAHA !!!!!! We laughed so hard...........neither of us saw it clearly at the time we got it cause of the tears.....he had his glasses on when he brought it in........I had mine off when I tried to smell it, which is the best way I see up close..............OR it was real originally and Mom played a joke on us........I remember her driving me crazy when she kept saying she had an artificial tree that kept growing toward a window when she meant to say "ornamental".............HAHAHAHAHA Now that rose is prominently displayed on my Christmas tree.................
The caregiver took her to the senior center on Wednesday. He said they had a good time and she ate well. He is great for trying new things with her and she is happy to oblige him. A different person is always good.
I emailed her doc for more information on what is covered on her insurance regarding home health care nurses for her personal grooming, bathing, etc but have not heard back yet. I am glad for that because when she takes her time it reflects it is not urgent. (Maybe other docs have their reasons but I know and respect her so for her it just means it is not urgent and perhaps we will talk about it at the Jan appt). It would be good to have someone bathe and groom her as often per week as allowed but insurance does not cover it then it will have to be out of pocket. I have enough on my plate that adding more care for her is not something that will easily happen. Extra help is nice to have.
On Saturday a caregiver will take her to church while I study for one class. Sunday we are going to a Wizard of Oz performance my granddaughters are in. When I showed Mom the tickets she said it will be nice to go. With the Paxil she is taking her mood is lighter and she complains less than she did for most of my life. I read someone's loved one is also on Paxil and experiencing the same positive results. I know it felt like an eternity to have the med kick in and many of you suggested I be patient and I appreciated that suggestion.
I value the advice and suggestions of others so please continue to do so. There are many things I do not know and would know even think of that others posts. And like my sister always says "I'm not tell you what to do, I am only offering a suggestion" is what I read in people's posts. I like her approach.
I had a rough patch this week in school. I presented on an article and the info in the article was less than flattering for a population of people. Natives of that population present in that class were offended and we had a forum of all classmates to discuss cultural sensitivity. I appreciated the info but felt like they were shooting the messenger because they didn't like the message. This brings me to this group. I know I have said this many times before but I believe it bears repeating (at least for me it does): I appreciate the soft place to land after a hard day with the people in this group. This group is very cohesive in that we come from such diverse backgrounds and yet when I am in this site I know we are all kindred souls. Where our people come from, what languages we speaks, what religions we believe, who we voted for political officials, what we eat or don't eat, etc etc etc are all shared and respected. You all are my breath of fresh air.
So while I muddle through and study my brains out during the next two weeks know that you are part of my life in such a positive way and I thank God for you every day. Your humorous jokes, your poignant stories, your ideas that could make ones life better, the common ground of frustration, joy, anger, happiness, and everyday crap (literally many times) keeps me going. Thank you for your loving posts filled with your life's experiences that enable me to go through my life experiences with your support. I appreciate you. SDPeg
Jam, hope the dentist visit isn't too painful for you today, will be thinking of you...if we don't hear from you we'll know you are taking it easy...
Shawna hope you sell lots of your ornaments this next few weeks....have you tried taking some of your things to local stores??? I know here in our little town if you take handmade things into the corner groceries, they will somtimes display and sell your things... never know...
We have major rain coming today, and I have no idea where my umbrella is....haven't had to use it in so long.... looking forward to this weekend of being off and reading and sleeping in this rainy weather...
hugs and angels to everyone this morning.... love
AIG I hope Auntie is feeling better soon and that you get some answers. That is why I so love moms doc. He lets me know everything and will come to the hospital when moms there. Or he will even call the house.
Jo I hope You feel better one of my friends has Fibro.... its hard for her sometimes.
Peg, I am so there for you darlin. I so agree.. when I am asked why I do it. All the time by some of my friends I went to college with and some high school. (well the high school arent friends just close aquaitances) I tell them cause I love her and I want to. One friend who is no longer a friend I am not talking to anymore. Complained I had no life, that I should just dump her in a NH and get on with my life. Well lets just say some choice words were said and we no longer speak. We all have our reasons for doing this and we are all different. There is no set reason they are all different and some people just don't understand or don't want to.
Ladeeda you are soooooooo ...better off without that sister in your life. I wish I could do the same with my sister and my idiot brother. Yet I can't.
Ish, yes I can see why you are very upset with Hospice. I am not too fond of them around here in this area either. Not after losing my sister in law in 09. I also don't like our pastor from our church for the same reason Sending soothing thoughts and prayers to you love... my shoudler is here if you need to rest it. You did a good job you did the best you could.
Lindy, mom sometimes has those two. I would have her checked for anxiety depression. They put mom on paxil for it She does a LOT better with it. Not so many of them now and not so aggressive with the grandkids.
Mamasfriend, there is not a lot I can say to that. Most I can say is take a step back take a deep breath. She's probably frustrated that she don't remember or can't do something. Its hard for them as they age more and more to lose their independence. My mom is a stubborn ole woman … and when she finally had to give up her independence it was a hard battle between me and her. She would say I am standing up but I'd be the one HOLDING her up. We still have those days.
LOL Jam yes I am busy making ornaments and mugs and other stuff lol. How is the COL …. crazy as ever? Hope you are doing okay during this season.
Seeme sweetie, I am thinking of you. Hugs and warm fuzzy thoughts for you sending to you.
Started the holiday decorating oy …. still doing that and handling other things. No phone calls coming from brother (like there's a suprise NOT) I know he only did the whoel calling thing to make him look good. Mom don't care she told me today well lets see he did the whole call me on thanksgiving said he'd all this weekend but didn't. Why am I NOT surprised. I just hugged her and told her I loved her. Going to the mall with sister on Saturday going to the tree lighting tomorrow if its not too cold. Got my catalog back on website http://lilacorn.net/mysticglen/mysticglendesignscatalog2.html its flash so … much better than the PDF lol. Still fighting with the penison people and have to go to another meeting with others. Working my tail off cleaning house and PINGO dishes and laundry. Having no breaks lately what with mom calling me ALL the time. Sit her up pad her with pillows go back to what I was doing again calling and set her up. Very frustrating. She's doing okay just wants my attention all the time like it was when my sis was here. But I can't do it all the time cause I have a hosue to clean and work to do. I had enough today and put her in her wheelchair (thankfully no sliding) set her in the kitchen next to the computer room I am in and she could see me. She was fine. And I got stuff done.
Had to babysit tonight boy I do NOT like my nieces new upstairs neighbors had to call the cops cause they wold NOT shut off the music or turn it down. Even went upstairs to ask them politly hearing loud blaring swear laden rap music did NOT bolster this girly's courage. Espically not with all the shootings and crap thats been going on in our city lately. I asked politely knocked and even talked loudly over the music but nothing. So had to call the police they dealt with it but boy my legs were shaking giong up the stairs. Now sitting down at the computer relaxing mom relaxing and chilling out. Going to hang out with sis saturday actually looking forward to it. Miss other sis though I just talked to her on the phone. Oh well have to have another get together soon. Oh yeah and have a cookie making date with all the nieces and nephews this month OH JOY LOL
People that goes to that place are octogetarians with disabilitys.
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
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......
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.
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
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
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