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.
Jam, I meant to respond to you yesterday re: making the decision to put mom in a nursing home. For us, the decision was made months before she actually went. There was some guilt, but I had worked with seniors for 20 years and knew that sometimes it's just unavoidable. She had been sick for 4 years but my stepdad was adament that she would NEVER go to a nursing home. She had already started falling frequently and she is 150 pounds of dead weight. My stepdad was diagnosed with metastatic lung cancer last summer. I tried to take care of both of them by myself - until hospice threatened to report me to DHR for elder neglect if I didn't stay with them 24/7. Then my stepbrother stepped in and we worked together when he was able to be here. Well before my stepdad died, I knew I could not take care of mom by myself. I went ahead and told her so she had time to get used to the idea. She really didn't seem to be all that surprised - I think even she knew we couldn't keep going like we were.
Even having a parent in a nursing home takes a chunk out of your life if you are as attentive as you need to be to make sure she gets the proper care. It's a tough decision to make, but please remember our own future is limited. I don't know how old you are, but I'm nearly 60 and know I have a lot less years behind me than I do ahead of me. Because of our disabilities, my husband and I aren't able to be carefree retirees, but now we can at least go out to eat or watch a TV show together without worrying about my mom.
Sorry for the novel, but I just want you to know - it's a hard decision to make, but once made it changes your life dramatically. Your responsibility is NOT over, but you can finally get some rest. I feel your pain, my dear. (((((hugs)))))
Going to make a few suggestions - feel free to ignore them if they don't fit.
I do sense the fear, obligation, and guilt hanging around so 1) to overcome some of the fear take some time to look at nursing homes around your area and when you find a decent one, take mum to visit it too. There may be things in the NH that mum would benefit from 2) to overcome the obligation, which I think u r, continue to make time for you and your family through using the help of others to sit with mum. 3) to overcome the guilt realize that u r a loving daughter who has no reason to feel guilty - even if you place your mother in a nursing home - sometimes guilt is tied to shame and I suppose the shame comes from not being able to meet your mum's every need yourself. No one can meet the every need of another person. I know it is particularly hard to deal with this in elderly frail parents, but it is still true. I would never bring my nmother to my house because of her mental illness - I simply am not equipped to deal with it. I( see many on this website dealing with very complicated illnesses, and strugging seriously as they are not trained nor equipped nor, perhaps suited for this type if work and in some cases it is negatively affecting their health -mental, physical or both.
I have said it before - for those who can look after a parent at home, you have my admiration, for those who can't you have my admiration too. (((((hugs))))) have a good day
jo
Yes, each of our stories are different but really they are the same. We all have hearts that many others do not. We have compassion in amounts others only dream of! God (if you will) has given us gifts that we are responsible for using.
I know caregiving is a difficult responsibility and I also know that if not for this group of wonderful friends, I would not be so strong.
My tears will flow for my mom as she gets older. My emotions are mixed almost every day. She and I hadn't gotten along much when I was a teen and we really did try to get along so my kids would accept her; it makes me angry that it was only after my Dad's death last year that we have gotten along so wonderfully. I do have my guard up regarding what I do tell her (as she is Ms. Gossip!!!!) but seriously, our conversations are heartfelt. What makes me angry is that I know her days/weeks/months/years are numbered and I want more time to enjoy this great relationship with my mom!!!!!
I also understand wanting to go back to a simpler time. I want to do that as well.
Good night all ... I am so thankful you are all here for me. Peg
shawna - u sound good - and busy
stormy - looks like you are getting some answers - thta lil red of yours is quite a handful but most are at that age
seeme -welcome home - hoper u r getting caught up ur sleep
starri - where r u????
sdpeg - sounds like an emotional rollercoaster ride to some extent -has the hero bro visited yet?
ros - praying for work for u
vic -how ya doing???
mis -yeah ur leg will heal - takes time - hope g'ma is behaving
pegly - how's fil?
spaz - u r sounding much better - think u got some good advice about the meal issue
carol - sounds like something needs to change -why is a NH out of the question?
ladee - u are tired! - hope marie is behaving
everyone else - let us know how u r doing
been a bit of a week -first the horses were let out, then dd had a meltdown, then the next day went out with her and the grandkids to lunch and the new community center and public library, then today took oldest son's common law g'friend out for lunch - she is visiting in town for a few days - and met her sister and nephews -that's a lot more social than I have been for a while and got a 40 min walk in tonight - think I will sleep well tonight
have a good one
love, hugs and prayers ♥♥♥
jo
you have and are suffering abuse - protect yourself - u can't change them - just you - BTDT got the tshirts - not going back -
know all about evil letters so do my kids - took me days sometimes before i could open them
yes your health issues are ignored - know about that too -and only what you do not do counts it seems not the things you do do
i get bad mouthed by my sister and mother -whatever - yes there is hurt but i am getting to a point where my health comes first - it has to or I am going down hill and their evil behaviour is their problem not mine -they manipulate with FOG -fear, obligation and guilt - blow it off -
I retired to move mother out of her apt into an ALF and then out of there into another one and deal with all the problems - looking back I would not do it the same way again
Good luck to you and come back and let us know how things are
love and hugs
jo
The col has been a very good girl today....hoping it will continue all weekend. Talked with her care giver today and the other day the col was demanding to go out and run around, as if she could, and she put her finger in Heather's face and said "You're not the boss applesauce".....Heather said she couldn't do anything except stand there and laugh, it was quite humorous....then explained that we left her in charge and yes indeed she was the boss!!!! 5 minutes and the thought is gone, so what the heck!
Hope to hear from the rest of this posse!!!!!!!
Love and Hugz,
Jam
Seeme, I am still waiting..... just want to know you are ok...
Jam, sorry your trip sucked... but glad you got out for a few days.... how did it go at the dentist today???
Spaz, I agree with everyone here, get them all together at the same time, then everyone will know what you said, what you want, and what you expect... that means the Social Worker, the DON, and the Administrator....so everyone is on the same page, and know that you mean business about your moms care..... you pay them, they have to at least listen to what you say.....
Ro, any news on the job front?? And you are right, things are tough all over the world, not just here in the US.... But maybe it is time to check into getting a grant ( if they have them over there) to write that book you have in you.... something to think about....
Carol, do you mind me asking 'why' you can't place your mom somewhere? If I understood more of what your issues are with it, I might have some suggestions...
And that brings me to the subject of putting a loved one in a NH.. Jam, you made all valid points... the one thing that keeps going thru my mind is some feel very strongly about the commitment of taking care of someone at home.... I know guilt plays a big part for many, but I also think there is a commitment there that goes way beyond our understanding... I know I would have never put my mom in a NH, and it had nothing to do with guilt, it had to do with the life she had and it was her turn to be taken care of..... unfortunately, she died before we had to make that decision, but I do believe the "ugly sisters" and I would have agreed on that one... My dad....None of us would have had him in our home.... there was no way I would have put up with him, don't think the "ugly sisters" would have either... he choose to go in ALF, he could be hateful to the staff, he figured he was paying them.... he would not have gotten away with that mess with me. I only went around when I wanted to, no guilt, no sense of obligation, I mostly went for myself, so I didn't have any regrets, but when I was there and he got stupid, I wouldn't go for a long time.... Did not have the same commitment to him I did to Mom....
And before I go any further, for new folks here, I am not fussing at Jam or even disagreeing with her, just giving another point of view... we DO NOT get ugly with each other on this thread, no fussing, only love and support.... that was the intention that Jam started this thread... so.. with that being said, I am just saying, as much as I know what it would have entailed to take care of mom at home, she would have only gone to a Hospice care at the end....
I have worked in NH's and will NOT do that ever again.... and I know there are some really great ones out there, but not everyone can afford them.... the whole system is messed up.... if home caregivers could be paid as much as Medicaid pays a NH , then things would balance out on the money scale... and it could be affordable for someone to come in for respite......I also feel that each situation is complicated with history.... but I most certainly agree that if it is guilt, then that needs to be worked thru, and choices made...doing it out of guilt is so full of resentment and makes the job ten times harder than it is anyway.....
This is one of the hardest jobs on earth.... and thank God for this thread, this sight, the people on here, the love and support, the hugs.... makes it all go a little better for us.....
I am coming out of the other end of a depression.... but I finally took a hard look at some things and have made some decisions, some attitude adjustments, and set some goals for myself.....
And yes I choose to do this for a living, but the FEELINGS are the same.... so, as long as I know I have this safe place to come, then I can do anything I need to for one more day.....
I don't get this serious very often, and don't intend on doing it again any time soon, so that, as Jam said, me on my soap box..... enough seriousness for one day.... and if I was well rested I am sure I would not have even gone there with this.... the tired mind does alter our personalities doesn't it...... OK enough already...
Shawna am going to your sight to see what you have added... ladies and cmag, I have gotten some stuff from Shawna for Christmas presents, and yes, I am doing some advertising for her..... maybe she'll post her sight again and ya'll can see if there is anything you might want, and she does custom work... I asked her to change some colors on one of my items, she did, like reading my mind, and I was very pleased....... don't' know if this is against AC rules... but f**k em', I think she does good work and just wanted to pass the word.....
Love you all and hope we hear from Seeme soon....
hugs across the miles....
Jam - I can relate to your post. I've caught Grandma several times putting Bengay on her lips instead of her knees, and lip balm on her knees. Tonight I turned my head for a minute and she's giving Peanut food off of her fork. I told her that's just gross and told her that Peanut licks his butt and you want to put that fork back in your mouth, I don't think so. I took away the fork and gave her a clean one.
Spaz if the social service at the nursing home doesn't help. I would go to the NH administer and have a meeting with them along with the nursing supervisor, and social worker. I had to do this when my mom was in NH. My mom was a cna before she got sick and lost part of her leg. I had to have a meeting with them. My mom told me one night she had to go to the bathroom and turned on her light. She needed assistance getting out bed. She ended up wetting the bed. I was so livid. I had a meeting with the administers and turned around and asked them "Well if this was your parent in here and this happened to them, you wouldn't like it. Would you?" I learned to ask them a question where they can just give me a yes or no answer instead one them where they can make excuses. None of them said a word cause they knew that I was right.
emjo I had by pass surgery back in April. My leg will get better.
stormy - I'll keep your dad and you in my prayers.
Will write more later.
Someone mentioned that for convenience' sake all the residents pretty much have to do the same things in the same place at the same time. I'm not sure if this is true everywhere, but in Alabama, there is at thing called the patient's bill of rights. They cannot be forced to do much of anything, and they have every right to have their meals in their room if they choose - all three of them if they want to. So, my mom does have the right to have her supper in her room. She doesn' t know she could have all three meals there, I haven't told here because I know she'd insist on it. But the one meal a day I think is reasonble because of the control issues I mentioned. I have a niece who works in another nursing home and I asked her advice. She told me to call social service @ the NH, which I did and am awaiting a call back from them. Keep your fingers crossed for me!
Again, not going to see my mom today. My hubby was up all night and I don't want to leave him. I expect my mom to call any minute to see if I'm dead or just ignoring her. :)
Have a good day, all - have a teflon day if you can!
I hope everyone has had a good night.....except stormy is going to need a nap later today. It was nice to get away for a few days even though it consisted mostly of driving! As for Tunica, MS my advice would be if you have never been there, save your money.....I know we have been spoiled by Las Vegas, but this was not even remotely close. The highway south out of Memphis to get there is lovely and there are all these billboards advertising different casinos but you have to really watch for street names to find the ones you want. Each place is 5+ miles off the highway and there are probably 10 miles separating each one. They are surrounded by acres of cotton fields and closed small businesses. We stayed at Sam's Town...the rv park was closed off and weeds and grass were grown up around it so it's a good thing we hadn't driven ours. The hotel itself was okay, the room apparently used to be a suite, there was a room off of it with a tv jack but it was empty. We got there around 6pm, deposited suitcases and went down to check out the casino......1/4 of the machines were closed and out of service....played a little video poker and decided to go eat. Not hungry for a buffet and the snack bar was closed....it's 8pm! So find out that the leftovers from the snack bar will be taken over to the buffet at 9pm, it's now closed, and we were able to purchase a couple of tasteless sandwiches. The next morning, the hair dryer started to melt around the edges, they had given us 2 paper cups only, so coffee or water had to be used from the same cup. We started discussing just coming home, but wanted to eat at Paula Deen's buffet which is at Harrah's. So we went there for lunch, ehhh it was good, but wouldn't go out of my way to eat there again. Took a drive and got a picture of the Mississippi River.....:) Decided to head for home a day early....just couldn't stay any longer, so we started across Arkansas headed NW and just decided to stop when we wanted to.....stayed in Southern Mo and got home yesterday. It was nice to get away, but we could have bought plane tickets for the cost of gas and just gone back to Vegas.
The first thing out of the col's mouth when we got home was "I've missed you guys, let's go out to eat"! I guess she has driven the girls nuts with the incessant "let's go out" all week. She was by herself yesterday morning for maybe an hour and when Ronda got here she said she looked around and saw one of the dogs missing.....found my blind poodle wandering around the back yard all by herself.....so someone must have been trying to be helpful and then forgot her! Kind of like the 3 bowls of oatmeal she made last Sunday and I found in the fridge and on the counter. I fixed her a big supper last night and when I went down at 10 to put her to bed I found a bowl of oatmeal in the fridge.....don't know why or when she made it, but it was sometime after supper. Which brings me to the point some of you are starting to deal with...........there comes a time when it's just an impossible task to take care of our loved one at home anymore. And yes, this is something we are discussing. And GUILT has no place in this decision....why should it when you are only doing what is in the best interest of your loved one? Years ago, before "modern medicine" it wasn't anything to think about because people died relatively young. There is no shame in realizing when we can no longer do what is best for our loved one. It may take a little work and research to find the best place because we know some places are better than others, and when you find that perfect place there may be a waiting list and you have to be prepared to wait another year.....but these are trained individuals and there are more than one that will be doing what we, by ourselves, have done. I was watching the col while she was eating last night and the thought was in a NH she would have routine, which is so much easier on the demented mind, not that she doesn't have one now, but things have to be changed because of her changing mental status. She insists she can make her own meals............no she can't and hasn't for months. She insists she can walk around a mall.....no she can't, she can hardly walk anywhere. We've had to lock up all bread products or she would sit and gorge on them and did. We've had to lock up all the lotions, she was using her betamethasone as a body cream....it's a very powerful steroid that can affect the immune system, and after I put face lotion on her at night she was getting out of bed and literally globbing on more......I forgot something one night and went to check on her and her face was glowing.......huge globs on her face and up her nose. So she can't have free access anymore. There comes a time when it's no longer safe or wise to keep them at home because of......why? We enjoy watching them fade, their dignity gone, our extended family ignored, our mental and physical health affected? Sometimes the most loving thing we can do is make the decision to place them...........they are taken care of and we have the opportunity to save ourselves and still be able to love them. So please, throw GUILT out the window when it's time to do what needs to be done............I will since we are in the middle of making that decision ourselves.
Off my soapbox........into the shower.........and off to the dentist I go.....heigh ho, heigh ho................
Love and Hugz to all of you,
Jam
OK dad had his thorancentitis done today. Me and sis went with him to the hospital. And after he had it done the dr. came out and talked to us. That has never happen except at duke hospital. But the dr said that dad did alright through the procedure and that he took out a liter of fluid from around his lungs, but that dad had more fluid. He said that, that was all he knew right now until he could read his blood tests results. Also after dad had his procedure done the dr wanted him to have a chest x-ray done. Dad said they took 5 pictures of him. 3 of the front of the chest and 1 on each side of him. And we had his cbc done before they took him back for the thorancentitis. The dr told us the other day that there was two different types of fluid that could be around dads lungs. One was called transudate and that means that he could have congestive heart failure. The second is called exudate- and that one could mean that the cancer has spread or that he has pneumonia. So I guess we will find out thursday what his findings are. Lord I hope he can tell us something. This is going to be one long week waiting for those results.I just pray that he can give us some answers. I guess I am just anxious and worried that he is not going to find out anything. You know when you have gone for months and months knowing something is wrong and you go from dr to dr waiting to find out something and they come back with nothing. I guess you just start wondering is this time going to be any different. I guess i just need to pray about it. That the dr will see what is wrong with him and give us some straight answers. Well, I will talk to ya'll later! Thanks for listening to me ya'll and for being my friends and for just being here for me. Love ya'll Stormyyyyyyyyyyyyyy
Hey, Jam, what's with Tunica? Carol
I see some of you are having problems, have tried to get caught up with the posts but it's slow going. Will try and get something more written tomorrow around my dental appt.
Love and Hugz to all,
Jam
I'm home and unpacked already, retrieved my dogs and going through the mail. I hope everyone has played nice and I will be back in a little while to tell you all about my travels......have missed you all!!!!!!!!!!!!!!!!!!!
Love and Hugz,
Jam
Ladee yes I am very worried for my job. I am not working and earning enough money and if it goes on like this, I'll have to fire my 2 helpers and take care of my mother myself. Which is not a good solution for me, because I hoped I could continue to do this job during, and after my mother. And I wouldn't like to fire my two ladies who badly need to work... I feel responsible toward them and their families, too. I know you have hard times in USA, well in Italy is not certainly better.... Well, let's hope for the best!
Kisses everybody.
Anxiety and depression rear their ugly heads at times. I feel that as well, especially while caring for a loved one. Anxiety causes depression, so the Bible says, (not preaching, just remembering something I heard) and we are to cast our troubles onto God (easier said than done, right?).
Recently I have been practicing what I call "teflon" ... when someone says something that is rude, insulting, derogatory to me (you get the picture) my mantra is "teflon, teflon, teflon" and I imagine that word or statement (and sometimes the person himself) sliding off a skillet like a friend egg. Ok: sounds silly and I have only started this technique (which I thought of while watching an infomercial last night) so can't say how successful this will be but at least I will try. Funny how those infomercials can be helpful from time to time.
So have a "teflon" day ... let "it" (whatever it is) slide off your skillet. And embrace the wonderful person you are!
Peg
Had the ultrasound of my carotid arteries yesterday and the tech said he didn't see any problems at all. Of course will have to wait for the radiologist to confirm that but I feel pretty good about it. Maybe my hubby and brother were right...they felt my physical symptoms were caused by anxiety and depression. Still fighting these chronic headaches, but one thing at a time.
I'm having a bit of a problem with the nursing home. My mom is adament about having her evening meal in her room, which is her right. Four times in the past couple of weeks she has called me and told me the aides had insisted she go to the dining room. Each time, I called the nurse on duty to complain, and was told it would be straightened out.Yesterday, mom called just after 3 PM and said someone (an aide, I assume) had pushed her in her wheelchair to the dining room and left her there, never saying a word, even though mom asked why she was being taken to the DR. At her NH, the aides don't push the residents anywhere, they insist the residents do it themselves. So I'm totally confused. I called the nurse and she was extremely defensive and insinuated that mom was lying. Now, I don't put it past my mom to lie to get her way, but this time I had called her room about 15 minutes before she called me and there was no answer. Plus, the other 4 times she has called me about this situation it was always true.
I'm not sure how to handle this. I am my mom's sponsor at the NH and this one thing is something I feel she should be able to control. And I think if a resident asks a question, she at least deserves a response even if she doesn't like it. But if I push it too far, I have heard the NH staff can find ways to get her put out (have her put in the hospital, and suddenly not have an available room when she's ready to come back). Maybe I'm being paranoid, maybe I'm catering too much to my mom, I don't know (I have little objectivity when it comes to mom). But it seems to me that even though she can be very difficult, even a difficult old woman should be able to feel she has control over some tiny part of her life, one hour of the day - and ought not to be jacked around like that. I even printed out a sign in bold print and posted it above her bed that she has supper in her room every night.
Any suggestions?
I hope every one of you has a better today than yesterday, and that each day continues to improve your lives. Just coming here and typing out what's going on without thinking or proofreading is a great stress-reliever for me. Thank you all!
Jam, are you heading home today??? Hope we hear from you too... hope you had a good time... all your "baby chicks" behaved while you were gone, so we wanted to make you proud....lol
Everyone else, it is almost the end of the week, YE HA... no matter what, I am NOT working this Sat.... time for time off...... love ya'll and ttyl this evening....