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.
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!
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.
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....
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
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
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
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
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
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)))))
But again I see the things from outside. I think that if my mother were like this I wouldn't care at all about her. My mother has been quite self centered and I have felt abandoned by her all my life; sometimes I can't stand her and I have to hide in my room to regain my equilibrium. But she has not treated me so badly! So I try to take care of her, even if sometimes I feel I am choking in this life! If she had been more loving to me, I would probably do more willingly what I am doing now.
Ladee, I can survive some more months but as my debts are increasing, if things don't go considerably better I will be forced to change my lifestyle and the idea of staying all the time with my mother doesn't make me too happy. We all are connected in this world and if I stop working and I have to fire my helpers it will be a problem for them, too. So I hope that for the sake of everybody I get out of this mess... I am extremely stressed and worried but I can't allow myself to lose the grip. I guess I have to find my strength in my heels, in whatever part of my body, if I have lost it in my brain and in my heart!
Stormy, whatever the doctor will say to you, he'll give you solutions to make your father feel better... So, try to take every new you shall have with serenity... As much as you can!
To everybody else, big kiss
My mom's doc appt went well yesterday. Apparently her thyroid is askew and with a new rx that will be satisfied (in time of course).
Apparently the doc said my mom's memory loss could be reversible when the thyroid improves. Also her constipation and fatigue is directly related to the thyroid.
My frustration is that the labs done a while ago (6 months someone mentioned) indicated this and I feel the rx should have been changed then but someone apparently dropped the ball.
On Tuesday I went with my gut and took her to urgent care. That's when the recent labs were done and yesterday the doc was once again fabulous. This doc really, really "hears" my concerns as the daughter who lives with my mom. I am thankful.
The milk of mag should help the constipation as well.
I do not know that much about thyroid and rx for that issue so I welcome and embrace whatever info you have. I see her last rx was 0.088 mg of Levoxyl and it has been increased to 125 mg. I would love to hear from others that have experience in this so I know what this is about.
But for now, she is asleep (after being up half the night trying to have a BM) and I am thankful, for this moment, that the fog has been lifted on what her problem is.
Looking forward to assistance in understanding thyroid issues (I did google but sometimes I understand more from friends. Thanks, Peg
I am not knowledgeable about this at all so any thoughts and info is greatly appreciated! Peg
jo
Her TSH was 25.
I am happy to say also that I will go part time to school in the Spring (staring January 2012) so that I can be here for her and enjoy our days together. As I have mentioned, this is the best relationship we have had my whole life and I want many more years of it.
In the meantime I will get help for her (more than she has already) and count down the weeks until this semester is over.
I deeply and sincerely appreciate this info ... that's what friends are for!
Peg
I am so happy for you that your relationshp with your mum is better than ever now and that you want to spend this time with her so are reducing your school load. H
Hope the rest of the semester goes better now that her health issues are being addressed.
(((((hugs)))))
jo
I see from facebook my niece and her husband and, I am sure, my sister are coming over from Scotland for mother's 100th birthday next May. I did alot for the 90th b'day celebration so she can do it this time. Maybe this time I will let everyone else do it and just show up for the party - with Gary on my arm of course ;). -maybe riding horses... - now I am doing a ladee thing - imagination!!!
How is everyone??? I am having a quiet day - needed one after this week.
love, hugs and prayers ♥♥♥
jo
Am going to go back and get caught up on posts so be back in a while.....
talked to Seeme today, she will get with us soon, prayers sent her way for how different her world is right now.....
Finally have time to check in and let y'all know I'm still alive and kicking......I think. I'm just tired today....too much going on. The col has been a handful all day starting with breakfast. She didn't like the fact that I made her oatmeal instead of letting her eat popcorn. Went down to make her lunch and she is standing in the kitchen dipping her fingers in butter and smearing it on crackers. Threw that away and made her a hot lunch. And she's demanding, yes and to the point of stomping her feet like a two-year old, to be taken to "the mall"....I managed to escape for about 2 hours to do some outdoor work. But then it started again.....she has badgered me all day.....I've lost count of the number of times I've said we can't and the diaper changes and pounds of poop I've cleaned off her and the toilet....and through it all "I want to go....take me out.....I need to go shopping....". Target brought her cake for dessert after dinner....I sit with her while she eats....and he heard her going at me even while her mouth was full of food. He stepped in and told her she isn't capable of walking long distances and to stop the incessant badgering and she made a smart comment and started laughing at him. Monday can't get here fast enough. So that's been my wonderful day.............hope it's been better for the rest of you.
stormy....glad you will hear a better diagnosis this week. Let me know what you find out.
Shawna.....glad the website is done. I'm going to be looking at your firefighter items as my son is a firefighter/EMT.
SDPeg.....sounds like things will be getting better for Mom. Isn't it a relief to finally get answers?
rossella.......I so hope things improve for you.......or some rich, good-looking Italian stallion comes into your life!!!!!!
emjo.......hope you're feeling well and I sure am glad you will get to spend more time with your sweetie.
starri......is so busy traveling she doesn't have time to stop and send email or post. Has anyone heard from her?
ladee...........missing you........
seeme......missing you also.....I'm glad we didn't try to hook up last Monday......after Target got behind the wheel we would have been able to say hi/bye as we whizzed by each other.............I'm not sure what part of "we don't have a time constraint anymore to follow" that he doesn't get.
I've had to hit the back-space so many times that I have to stop this now. Will check in tomorrow.........hope everyone has a peaceful night.
Love and Hugz to all,
Jam
Peggy I am glad you finally figured out what was wrong with your mom here's to hoping the meds work and she goes back to eating good.
Stormy keep us updated on your daddy let us know how it goes
Ross hope work troubles cease
Jam just let me know .. I don't have a LOT of fireman things just the two designs...