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.
Burned-I sounds likeyou are doing the best you can with your children. The fact that you worry shows how much you care. It seems like you are on the right track with parenting and therapy. Good for you. Hugs.
Welcome to the newest people. Hugs and prayers to you.
Mom's still sleeping. Hope she feels better today.
Dad had an ok day yesterday. I was fussy with mom as she was on a roll right behind me picking up things and straightening just because I moved....arghhhhh. And the lady who sits with dad once a week..guess I will have to ask her to clean his privates in the bed after using the bathroom. He was very raw and in pain by the time we got home.... They like her very much and I do too but...when a person is going down hill and can't stand well then ...other means need to be taken. I guess I am too picky..I want the best for my parents. Know I need time away but not at their expense...
Hopefully we will make it to church today..will order and pick up lunch as it is so hard for dad these days to eat. He didn't want his lunch yesterday but did have some soup and a sandwich last night. Sometimes I think he would be happier if he went on to heaven.. Seems like he doesn't even try. I feel for him especially this time of year when I can't take him outside he looks at tv but don't really know if he is following and he is not reading much anymore...
Well enough of my thoughts...thanks for listening
What’s OK and What’s Not OK When You Are a Caregiver
By Cindy Laverty, January 17, 2012
Everywhere I travel and meet caregivers, I see a common theme: Most family caregivers are afraid to ask for help. Somehow people think that they should just miraculously know how to care for an aging loved one.
Why would you know this? You did not receive PhD in Caregiving and your loved one poses challenges that you don't have the answers to. As I'm listening to their challenges, frustrations, fears, sorrows, stress-induced situations and overall feelings of being overwhelmed, I find that many caregivers seem to need permission from a professional to ask for help. So very simply, I reach out and take the person's hand, and give permission. Usually there is an instant look of relief in the person's face. It's incredible that giving someone permission to not be perfect helps relieve the pressure and the stress.
Caregivers frequently suffer from severely stressful emotions that can control and even ruin their lives. Sadly, these are the caregivers who, for whatever reason, have refused to ask for help or seek professional advice either from a medical doctor or a therapist. In order to manage the caregiving journey, you simply must step out of your comfort zone and find alternative methods for dealing with your personal situation.
The only way that family caregivers can sustain all that needs to be done to care for a loved one is to delegate responsibility and ask for help. It's really simple and it changes lives.
Here are some things that I think are okay for caregivers:
It's okay to be scared.
It's okay to be angry, lost, sad and even depressed.
It's okay to lose your patience.
It's okay that you don't want to sacrifice your whole life for someone else. And you shouldn't.
It's okay that your self-esteem feels damaged.
It's okay that you make mistakes.
It's okay that you don't know how to do everything.
It's okay that you don't have the answers.
It's okay that you don't have a cure.
It's okay that you're not there all the time.
It's okay that you sometimes have extreme feelings towards the person for whom you are caring.
It's okay that you lost your temper.
It's okay that you had to apologize.
It's okay that you're afraid.
It's okay that you can't get everything done in a day.
It's okay that you have guilt. All caregivers have guilt.
It's okay that you have compassion fatigue.
It's okay you feel trapped.
It's okay that you took a few days for yourself.
It's okay that you vented to your spouse or friend.
All of these things are absolutely okay. How you manage them is going to make the difference between becoming an Empowered Caregiver or staying in a hopeless situation.
Here are some things that are NOT okay.
It's not okay that you feel like you have to do everything yourself.
It's not okay that you feel like an indentured servant.
It's not okay that you are ignoring your personal needs.
It's not okay that you are ignoring friends and social activities.
It's not okay that asking for help paralyzes you.
It's not okay that you don't have a plan in place.
It's not okay to feel helpless and hopeless for days on end.
It's not okay that you have stopped doing activities you once loved.
It's not okay that you are afraid to say "no" or "not now."
It's not okay that your siblings don't help you.
It's not okay that you don't have boundaries in place.
It's not okay that you feel unappreciated by your family.
It's not okay that you have lost pride in what you are doing for another human being.
It's not okay to sacrifice your financial security.
It's not okay that you do everything your loved one wants, especially when the demands can be outrageous.
It's not okay that you don't sleep or eat properly.
It's not okay that you are constantly exhausted when help is available, if you would only seek it.
It's not okay that you are sacrificing your personal health for another.
It's not okay that you are constantly trying to fix everything that is wrong.
It's not okay that you are living your life in crisis.
If any of the above rings true for you, then decide right now that you will get the help you need. Decide that you will live your life in a better way. Decide that you will take the necessary steps to ask for and get answers to the challenges that you are facing. Decide today that you are worth the time, energy and financial investment to survive, thrive and become an Empowered Caregiver.
It sounds like you are quite a bit younger than your husband. It appears that his sons basically left him long before he asked for you two to move. I've heard of grown children, who don't visit their parents right there in the same town, who get angry when their parents decided to sell their home and go live somewhere else. It is sad to hear about the hate and bitterness they have over ya'll leaving, but I don't understand why when they had stopped coming to see him except for the youngest.
I"m glad to hear that you have returned to attending church and are making some new friends. I hear a lot of anticipatory grief in the statement about not knowing what you will wake up to every morning in terms of will he still be with you and a lot of deep grief in the statement that this is not the life ya'll had planned.
Life not turning out as we had planned seems to be true for many of us, myself included. After working for 20 years, I found myself going on disability because of medical reasons and my wife had gone on disability the year before me, plus we had two boys in middle school and now they are in college. We never dreamed that either of us, much less both would be disabled and disabled so young. I never dreamed that my mom and step-dad were lying to us about their finances when in 2009, I discovered they had not filed taxes since 2004. What a mess that was to clean up as an only child. My wife and I are both still grieving over no longer being able to work and now we have an empty nest which is an adjustment as well. I'm 11 years younger than retired people and feel very lonely in society and in church. Basically everyone who was my friend because of work all went away once I went on disability. We live in a town that I never dreamed that I would live in. We didn't know anyone here when we moved here in 2003 and we don't have any relatives here either. My wife has made many friends but there are more opportunities for women to network like book clubs, etc. but still she is years younger than most of those women.
I still can't wrap my mind around your children hating ya'll moving and being bitter over it when as you say, they had stopped coming to see him except the youngest. Sounds like your husband is not as lonely as before. Why did they abandon him?
Please come back and talk with us some more. Prayers for you!
Happy to see you back... let us know how she is doing..... prayers for her and you and your family...
Thinking about the morning, I know she was not herself at the clinic, because she never once mentioned about her husband being a doctor and how she worked with him in the office for 37 years and that she is just old and that's all that is wrong with her [sigh]. Guess we will just wait and see how things go the next few days. She has been sick twice before since she has lived with us and each time snapped out of it in a day or two.
Thanks to everyone who welcomed me. Posting on the web is not something I am used to doing, but I'll keep trying. Many of you have stories that I can identify with, and maybe some things I have learned over the years can help someone else. Hugs to all !
burned.....sounds like you have things well in hand....just a couple of normal, rambunctious kids.....
Hugs to all tonight,
Jam
The chair on wheels was a good idea theoretically, but tonight I sat on it and I fell suddenly asleep (when I fall asleep I faint), and I fell from the chair and I hurt my head and my foot and my knee! I am happy it happened to me and not to my mother. So the chair is good, but just to move her around. She mustn't fall asleep on it!
Jam, Ladee, everyone of you who was in the Grossed Out thread, if you wish, write something to Linda Hardebeck (Lindaheart). Her father, whom she adores, is declining rapidly and this is a huge sorrow for her. And if this were not enough, she lost a niece (21 years old) a few days ago for a car accident. She is overwhelmed and she needs all the support she can have...
Big kiss to everyone
And I thank each and every one of you for your contribution of making this a great place to come to and read, vent, laugh, and have and give support..... grateful for you all... love , hugs, angels....
Ro.....I so enjoyed reading about the antics of your fur babies....sounds like the little heathens that live here...lol. Glad the chair is working out for Mom....how much easier on you that will be! How far away from you is the capsized cruise ship? I guess I really don't know where you are located.....other than about 50 mi from Rome.
notlike.....glad to hear Dad made it through treatment just fine. And sorry Mom is having sinus problems....I'm sure that doesn't put her in a very good mood, but at least you are able to help her without an argument......I guess there comes a time in everyone's life when we start to concentrate on "end of life". When we had the col's Dead Documents done, we did ours also. We finished paying her funeral expenses about a month ago. She had told us that she only owed for the opening and closing which was $275.....that is now $750....plus a bunch of other small things that no one had ever told her...so $1000 finished things up for her. The only thing we will do ourselves is submit her obit to the paper....they wanted $300 to do that for us! I don't think so.
burned......counseling for the kids is probably a good idea as Dad's illness affects them also.....it takes away from your time for them and they really don't understand the dynamics of what is going on in the household. Putting them on a schedule will help also. The important things to do right now with all the paperwork is to make sure you have Power of Attorney, medical and financial....how about Advanced Directives......and you might also look into making a Will.
ladee.....sounds like you got some sleep........must have been quiet for a change or maybe you were so tired the music didn't wake you?
I googled "chicken butt-warmers" yesterday and didn't come up with a thing. River you're going to have to share that pattern....I just want to see them. I saw the rose colored glasses on Storage Wars........and they were worth a bundle. When we first bought this house we talked about getting some chickens so we could have our own eggs.....kind of glad now we didn't.....I'd have to crochet for them! The hard part is getting them to put them on....:)
Hope y'all check in and let us know how you're doing today..........thinking of each of you.
Happy Trails,
Jam
River, chicken butt warmers... ok, I'm going to make an ass of myself, as I live in a rural community, am going to ask around about butt warmers.... makes sense as I have seen some pretty messed up chickens..... lacking feathers on the rear end...glad you are here, you make us laugh, and to think, and to use our imagination.....lol
burned, happy to hear you are not even considering letting her in your home.... good move... and notlikemom had a good suggestion for maybe getting the kids some counseling with all that's going on....you have made a lot of progress burned, keep on keepin' on....
notlikemom, glad to hear dad had no major problems with his first treatment...and mom actually let you give her OTC meds... and didn't accuse you of trying to kill her with them.... is this progress???? I know, I know, am I delusional, yes, but that has nothing to do with the question.....
Will get caught up and get back with ya'll later... love and hugs....
Up early and had a nice long post written and POOF!!!!!! Need more coffee before I can do it again. Thinking of you all and will rewrite in a little while................
Ladee-I can see you and your baseball bat, in full righteous glory! Please bring it here and use it on my neighbor who is shoveling outside the bedrooms at 5 AM!
Jam-hope you find the quilt.
Vic-sounds like a pretty wondeful day. So glad for you.
Stormy-prayers that cyst gets fixed without problems.
Rossell-So cool the wheeled chair worked! My dogs eat like crazy things. Eveyone has their own bowl to start with, then they switch around until they've checked the other bowls. They all get the same food, everyday, so I really don't know what they are expecting to be different! LOL
Burned-panic attacks are awful. I know, I've had them. Please talk to a doctor and see about getting some meds. It really helps. Your pediatritian might have info on helping your children cope. There should be resources out there. Hugs.
Dad had his first treatment yesterday and it went well. Thank goodness, One down, five more to go.
Mom's got a sinus issue, but OTC stuff is helping. Her old doctor gave her antibiotics every time she sneezed. I don't agree with that, and have told her so. I've also offered to take her to the doctor if that's what she wants. She hasn't asked yet to go, so we'll see if she gets better on her own.
Another weekend - yeah! There's always too much to do, but I'll get some of it done. And a nap!
Have a good day everyone.
So the furbabies have found a leader in Dorothy and now you have a rebellion....Bet the neighbor dog is one happy little bundle of fur.....You never know, he may have put them up to it, smelling all those good smells coming from your kitchen.....The Diva gets special food too, but she is fifteen and I only have the one....spoiled babies, but no sense in having them if we don't spoil them....
Am glad this week is over...but Ro, the motor home doesn't work, I had to have it towed here... but I can have it towed somewhere else....and beleive me, if it would drive... I would already have moved... but it's a plan in progress.....I am surrounded by millions of acres of woods, surely someone has a spot for me and my ratty trailer....am going to put an ad in the paper and see what happens... at least i'll feel like I am doing something....
will check back in later.... going to try and get rid of this headache.....
love and hugs...
I think she likes the mobile chair, after all!
River, when my mother's head was still working, she always talked about her funerals, mostly about the place where she wanted to be put when she would fly in the sky. As it happens in many southern italian families, we have a family vault (well 3, in fact) so I grew up listening to my mother and aunts and grandparents arguing "I want to go there: above Uncle xx and under Aunt yy, while you can go in the other vault, between granduncle zz and grandaunt ww". and it seemed very queer to me. Apparently, there are better places and worse places. Why? Is there a better view? Creepy and funny at the same time! But I have to confess that last time I was at the cemetery in my home village I started to think: "Where will they put me? Can I choose?"
Burned, I know you are sorry for your SIL, but you can't keep her too.
Ladee, what's the point of having a mobile home if you don't move it when you don't like the place where you are? I am sure that if in the weekends you will look for a better place, you will find it.
There has been a revolution in my pet family because I have always fed Camilla, my oldest dog, with better food because she is the oldest. Dorothy realized it and she wants the same food as Camilla. Now Erika (the 3rd girl) has realized it too, and she wants the same food as Camilla and Dorothy. And Rexy, the boy of the family, is on strike too. So I cook pasta and meat for everybody, and nobody wants it anymore. So I give it to the neighbour's dog, who eats all the pasta of my 4 dogs and he doesn't complain.
Dogs!
Had a nice visit with the col.....oh my goodness the things we said to her didn't even penetrate....she just kept looking at us and saying "I'm so glad you came to visit". Her doctor came in to see her while we were there and she decided to show him how well she can stand. Butt didn't move off that wheelchair an inch. Her quilt is no where to be found. If it hasn't shown up by Monday, going to call the administrator and tell her that it would be a good idea for it to show up. I hate to buy things for other peoples' beds when the col is the one who should have it. After the fact, it will be donated, but not before.
Lack of sleep is catching up with me....power nap time.
Happy Trails,
Jam
Suffice it to say, I've read the posts. I'm laughing about the chicken butt warmers and a few other things. But I don't have time to re-write now.
So......hugs and warm wishes to all. TTYL Bee
Thank you for reminding me Vic!!!!!!!