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 - hope you get to feelling better. Thanks for mentioning the snow cause it's now spitting a little here. Still not enough for my liking. All of ours melted away over the weekend.
Shawna maybe you got what I got. My nose would run like a facet and when I coughed my eyes would water like a sprinkler. I on some antibotics now so hoping this goes away soon.
Sdpeg hang in there.
I will be taking pics of our outside decorations tonight now that we have our tree in the window.
Jam - Yummy tomato soup. One of life's best simple pleasures.
Lindy-a new doggie is awesome. I have three and they help me stay sane sometimes. Plus Mom loves them and they love her unconditionally. What kind did you get?
SDPeg - I really want to get past the eggshell stage. I'm learning how to keep things from getting worse by just ignoring her comments. It still hurts, but I'm learning. I want to be able to speak my mind with her and for her to learn that I won't accept her behavior. I think not buying into her yelling is a start. I would run out of breath if I corrected her everytime she got out of hand in a day!
Later!
Woke up this morning.....yes I actually got some sleep....to a dusting of snow. It's gone now and a whole 22 degrees and going to reach a balmy 29!
One place on my gums feels like a secondary infection. Dammit! I've been taking antibiotics but felt swollen and throbs a little. It's the same one that had the abscess in it so who knows.
SDPeg..........part of what you are stressing out about now is what I was asking in my questions last week. Why not make this a little easier on everyone? Go to the Hallmark card website and buy a subscription...$12.95/year. You will then have access to all cards, regular and e-cards. Mom can sit at her computer and shop for cards, have them signed, put in an envelope, stamped and sent. Done. Or you can have the cards sent to her and she can do all the signing and postage. I can't begin to tell you when the last time was that I went somewhere and bought a card.
lindy........yippee time away!!!!! What is your new fur baby? And does he have a name? I'm a dog person also.....I would adopt them all if I could! Did you see the video about the rescued Beagles getting to feel grass for the first time? I cried when I watched it and I so hope they all have found forever homes.
I hope everyone is having a good day......drinking some tomato soup and think I've died and gone to pig heaven....:) how can something so simple taste so good? And more pain meds. Check in when you can......................
Happy Trails,
Jam
I hope all is well with you all.
I do want to repeat a post I wrote earlier. I did Christmas shopping with Shawna and if you are not done shopping, she's the one to buy from. Yes it is nice to network our friends but what she is doing with a photo I took years ago is just breathtaking. So not to sound "marketing Shawna" but please do contact her for gifts.
My mom's caregiver yesterday was asked to take Mom to Hallmark to get 21 Christmas cards for family. They came home with 5. Mom said it was "too cold". I have to vent: I HATE IT when a task is incomplete because that means I HAVE TO DO IT or get that caregiver back out here again to finish it which means she gets paid AGAIN!!! This adds more stress to me as you all can relate. It is bad enough that Mom is "trying" to do Christmas this year (she didn't last year due to my Dad's death) and not completing this task and making it difficult for me isn't making this season any easier. The Wednesday caregiver cannot do this job as he doesn't read English and I put each child, grandchild and greatgrandchild on a 3x5 card. So I have to wait until next Monday to have Monday caregiver finish this task which interrupts my schedule of having her help mom write her names in these cards. Seriously? I told her it could take up to two hours and she is getting paid for 4.5 hours. The only other thing they had to do is eat lunch!!! Deep breath, deep breath, deep breath!
I was thinking of having caregiver come out another couple of hours but then realized that's more money for her and thus rewarding her for a job she didn't complete. I know there could be more to the story but my frustration is, as well all know, if someone else doesn't do a job (completely or correctly) that is stressful for us. And finals are next week and this is NOT the time to piss me off!
Deep breath.
Ish: please hop onto this site every once in a while and let us know you are ok. Grieving is hard work. Let us carry this burden with you. We have all been there and we are a great bunch of people who listen well to whatever you want to say.
Lindy: I agree with ladee ~ it IS the repetition that drives ME crazy. It is the repeating because hearing aids are not in, it is the repeating because of cognitive decline, it is the repeating because that's what Mom has done all her life to get attention. UGH!!!!!!!!!!!!!!!!!!!!!!!! (Whew that felt good!!!)
Stormy: you are in my thoughts and prayers.
Jam: oral surgery? Ewww!!! Prayers for healing well and quickly and that you get some rest.
Paxil: I am not changing or requesting a change for Mom's meds as I believe her doc has her best interest in mind and after reading your posts, which I deep appreciate, this IS the best med for her. If sibs who live a distance cannot accept the fact that Mom is declining mentally and want to blame it on a pill, that's them, I know differently. And I am the one here and so maybe that's a good thing that I know the truth and am almost accepting it. Thanks for your input. I greatly appreciate it.
Jam: thanks for your input re: keeping a record. That's what I will do during break. I might not start it until after the holidays as we know we are ALL askew during this time and if I kept a record of MY ACTIONS during this time, well I would have to check off many items: didn't make bed, forget where I put my keys, forgot my lunch, took a moment to recognize someone ~ yeah that's me during finals time + holiday time. I'm not a pretty picture that's for sure. So January that record keeping will be implemented. Thanks.
Notlikemom: I don't walk on egg shells and I support your decision not to as well. I don't think our person/people would appreciate knowing they are causing that much stress. I am myself with my Mom and speak my mind. We didn't do that before so this is a major change. Dad always wanted to keep the peace. HA!!! If only he could see us now. I do remind Mom that I am upset or frustrated with the "situation" and not mad at HER and that seems to help at that moment. If she can't get dressed by herself and I have to run to school (or post here because I would scream otherwise) she does figure it out eventually. She is never still in her nightgown and robe when I return home no matter what time it is. So I am ok with letting her figure it out for herself. In other words, I set my own personal time boundaries and say NO when I have to (or just want to, I'll be honest). So I support you in being kind and compassionate while holding onto a piece of yourself that you will want when all this is said and done.
Have a great day everyone. Once again I am grateful for this wonderful group of people that have enriched my life in many ways. The friendships are incredible.
See you tonight
SDPeg
Lindy, I know how hard it is to be patient.. we all do, and sometimes we are not, that's ok, we are human, and the repetion of our job just makes us so tired sometimes.... is there a place you could put a beside potty that would not be in the way, for her to use as opposed to doing the stairs a hundred times a day...? And does she actually go to the bathroom, or she just feels the urge??? That would get old very quickly with me also.... hugs to you....
Jam, hope you are feeling better today.... that was a lot of trauma to your mouth, give yourself some time to feel better....hugs to you...
emjo, thanks for the morning chat, you are my island in the storm on some days...
Shawna, hope you are selling a lot of things from your business, and glad to hear mom is doing ok, hope you get to feeling better soon...
Stormy, doesn't sound so bad when Jam explained it... could be a lot worse, hope you and the family are ok....
Seeme , love ya and miss ya....
hugs and angels...
Siblings are a tad hard to deal with sometimes. Peg I understand what you are going through with the pills. I have to tell you Mom is on paxil or the generic form of it. IT has helped her a lot, she had a few episodes when she was first on it but once it settled into her system she was fine. Its done wonders for her as she used to be so punchy and aggravated with the grand kids. Now she enjoys her time with them so much more. I have seen what prozac does truly and I would not even think of putting mom on that. No way no how my idiot sister brought it up once and I told her flat out no and to butt out. Shes the one that never sees or does anything for mom. Then does the whole mommy thing when she does come down much annoying. Her and her low life scummy son who needs to take a freakin bath!
Stormy I am glad yoru getting some answers sort of. I don't know anything about the medical terminology.
Ishmal I am here for ya hone. Its nto an easy road, to travel. I don't know what will happen to me once mom is gone. This has been my life and I don't even want to THINK on it otherwise. Mom is doing good and all that but I do know someday I will ahve to face it. I am sorry about tyour family home in foreclosure. Been there done that and hate my sister for it. Thats a long story I just dont want to get into.
Ladeeda woman YOU need to take a time out and rest .. what would we Do without you.
Jam hope your feeling better
Missy hmm.. did I give you what I got hope not.
I been doing okay here when we went out I was good then the last two days I been sick to my stomach NOT a good thing. Trying to get through this holiday unscathed as it were. Moms doing good .. though she got rather mean yesterday when I didn't jump when she yelled. I did what I needed for her and just would go back to bed as my tummy was not feeling the love. Then to top it off my niece decided today (even though I postponed shopping with sis) that I needed to go with her to do this and that. That I had to run to her house get the kids pics take them back to the school so they could be redone while she was out to kmart shopping. I so wanted to say no... but sigh I did boy did I pay for it. By the time I got back the house i was white as a sheet and had to lay back down again. Yet she had the audacity to ask why i was still in her house after I ran her errand for her. Well sorry I had to use your bathroom was NOT a good day. Having to fix things on my site after getting told my site was NOT user friendly ... BAH...
SDPeg.....if you don't have Microsoft Excel on your computer, go to Microsoft Office templates and download whatever form you want to use. Tell sis that when she graduates medical school you will listen to all of her advice. Absolutely amazes me when people think Prozac is the answer....it was the first anti-depressant marketed.......does anyone else remember the warning put on it because it was causing people to commit suicide? Geez, that drug is older than dirt. Lexapro would be my first choice.
Back to whining now........it gets me waited on....:) will check back with y'all later..
Happy Trails,
Jam
I am trying not to "walk on eggshells", like my sister says she did when Mom lived with her. Pretty fast, I'm learning to avoid any topic that I know will cause problems. I figure I better save the fights for stuff that matters. But there are so many mines in the minefield, that I get yelled at even when I think I'm doing something nice. Her latest was telling me that I think I'm being nice, but I'm not doing things right "for her." We started putting up "her" Christmas village this weekend., She took years to assemble this, and gave it to me a few years ago. Now that she's here, we're putting it up. Of course, I don't have enough space, the right snow, enough time to do it right because she had the "perfect" set up before. I don't even want to do this anymore, because listening to her digs and trying to guess what she wants to do with the pieces is just draining me. I left all the stuff out and am wondering if she did anything with it today. I'll find out when I get home from work.
I know I will grieve when she dies, but right now I am grieving the loss of the dream I had of us bonding and spending time together. She was like a stone when she got the diagnosis and prognosis, and will not allow any discussion of feelings of sadness. If I try to bring it up, I am accused of putting those terrible thoughts in her head. Can't win, sometimes feels hard to keep trying. I would really like to be remembering the happy times with her instead of hearing her complain about everything.
Lindy20 - yes, Moms do what they want. Take comfort in knowing you are competent and have her best interests at heart.
No enlarged nodes or mass over 1 cm in hila. There is an enlarged node at carina, and between right mainstem bronchus and svc, axial 123, in addition to an equivocal node in aortopulmonary window axial 119, however these nodes are specific.
Right pleural effusion with compressive atelectasis right lower lobe.
Gallstone in fluid filled gallbladder.
Interstitial thickening and honeycombing at lung apices axial 75 suggest pleural -parenchymal scarring rather than diffuse interstitial disease. No signs of subpleural interstitial disease except for lung apices.
Impression: Right pleural effusion with compressive atelectasis right lower lobe new since 04/13/2011.
Pleural - parenchymal scarring at lung apices with honeycomb like appearance.
Nonspecific mediastinal adenopathy. Atherosclerosis. Gallstones.
Do ya'll have any idea what this means? Love and Hugs stormyyy
It is so bizarre to not have Grandma to look after any more. 8 1/2 years and 10 before that as co-caregiver / companion along with my mother. Staggering to think about. I am not really grieving much, and I think that's because I must have gone thru that during my intense 6 day solitary vigil at the hospice. Random intense waves of sadness roll over me, of course, but otherwise I'm functioning ok.
Finally got a decent amount of sleep. I meant to respond to some of the specific comments that were made, but I'm just NOW getting the energy to start focusing.
However, before doing that, or the "Judge my sister... PLEASE" bit, or even the hospice discussion, I am inclined to write about the 5 or 6 nice little surprises I had in the final days that could be considered "gifts" or "signs".
But first I have to head over to what used to be our family home - now in DEEP foreclosure - and as Mr. Miyagi (from The Karate Kid) might have said, "Show me MOW THE LAWN".
Later,
Ishmael
I am interested in knowing where to find the spreadsheet for recording the day's activities. I want to record the personal grooming, dressing, eating, etc of my mom so the doc (who believes me without a record) and my sibs will know exactly what it going on. I try to communicate with my sibs but I am seeing more and more (thanks to your posts by the way) that both of them are in denial of mom's declining mental and physical health. I thought (and hoped) my sister was on the same page but she is sending me texts that say mom's recent med is the recent mom has short term memory loss. I think it was emjo that opened my eyes (if it was someone else and I gave the credit to the wrong person, sorry, restless night affects MY memory) to seeing that sister is in denial and those that live a distance don't see what I see.
I know I am doing a great job and will continue to do so in the hope that mom will continue to enjoy life in the fashion she wishes to enjoy it. If she resists (as Lindy stated) it DOES make life more difficult for us ... and yes frustration, anger, no sleep and the holidays all contribute to our irritation. I reminded Mom yesterday that I am not mad at her for her memory loss, I am irritated that my car wasn't repaired right and in the shop again, I have finals coming up, I get impatient repeating 5 times the same thing, etc etc etc. Christmas IS coming and I ordered some things from SHAWNA and that took quite a load off of me. Can't thank you enough for your patience, Shawna, with me the other night while I was ordering gifts. I was tired and you were wonderful!!!
Onto school now. Driving my mom's car, it's bigger than mine, don't really like driving it, reminds me of my dad too much and that's tugs at my heart you know. Sitting in the same seat he did to drive this car ... well you know.
Thanks for all your help I am in school just two more weeks and a month vacation. Other than sleep, I plan to have fun with mom and go places weather permitting.
Have a great day all. I appreciate you.
SDPeg
jam - still not getting better? Oh dear! Glad you have pain killers - hope you don't have any dry sockets. I wouldn't wish that upon anyone. Rest is important (((((((hugs))))) good advice to sdpeg
sdpeg - like i said to jam - good advice.That is TOO interfering of your sister. YOU are looking after the day to day stuff, - she isn't, YET! I agree, if she wants that kind of input (control) let her look after mum, otherwise BACK OFF! And do not change plans that have already been put in place. My take is that she is, at some level, recognizing your mum is going down hill and is fighting that in herself, so trying to get in there and FIX it! Can't be fixed. She needs to know that YOU are in charge of the day to day and making changes with mum bypassing you is a big no-no. Very frustrating - yes, deep breaths -hope you had a good sleep
ladee - look after you - whatever it takes - look after you. Hope you found your umbrella - here it is scarves and toques.
everyine -vic, seeme, asg, cmag, stormy, ishmael, wanna, maya, notlikemom, bee my brain is failing me now - let us know how you are
warmer for a couple of days -means just below freezing - but then it is getting colder which is seasonal. The day are getting much shorter - sunrise 8:49, sunset 3:49 today. There is some light till about 4;30 Think we need some "gro lights" in the house. Got my granddaughter Em (8 yrs old) clothing for Christmas - SEQUINS are in!!!! science kits for 6 yr old Joel and money for the 23 yr old -what else! G was successful hunting and we don't get horns this time - has to share. The renters moved out - haven't had the guts to look in the basement yet but it smells like cleaning materials - I am sure there are a few things left behind but you know where they are going... Making plans to go to Etown with G and take mother out for lunch for Christmas - can't do it on my own right now - too stressful -anyone with a narcissistic parent will understand - you sit waiting for the arrows and even if they don't come this time you are still on alert - PTSD city!!!
hope everyone has a good day
love, hugs and prayers♥♥♥
jo
Like some of you, I find I cannot sleep so here I am.
SDPeg.....your situation now is not unlike the one I had with my Grandmother several years ago. She was living in Michigan with my Mom and had Alzheimer's and instead of placing her there, Mom calls me and asks me to find a home here. Okay Mom, responsibility a little too much? Got her placed and my oldest sister decided she was going to run the show. She didn't live close and only saw GM once a month maybe. I was listed as Patient Advocate but it seemed like every time I turned around sister was doing something to undo what I had done. Grandma had her eyes checked and we found she didn't need the same glasses anymore.....tore the NH apart looking for them only to find sister had pocketed them and was having them repaired. When I told her she didn't need them, sister decided she did. I left explicit instructions with the NH beauty salon that GM didn't get a frizzy perm.....sister insisted, then bitched when GM looked like an electrified Q tip. My 2 oldest sisters kept firing letters to Mom telling her how badly GM was being taken care of, no she wasn't, but I get a phone call from Mom saying "thanks, but GM is being moved tomorrow".....oldest sister moved her into a small home and that was the last time I saw her. Oh, did I say that sister didn't tell me where GM was? She died soon after the move. Sister has since gotten therapy and realized what a control freak she had been.....and we get along fairly well. Long story short...............life is too short to sit and listen to all the "do-gooders"..........you have more patience than I do. Tell sis you will have Mom ready for her move to her house complete with all paperwork necessary and medical records after the holidays. I bet you will hear the loud screeching of brakes, and at that point tell sis politely to butt out. You will keep her informed of Mom's daily progress and if any major decisions arise that need addressed you welcome her input, but until then, shut up and sit down. There used to be a place here on Aging Care to send a progress report on anyone. I haven't used it lately, so after they made changes here, I don't know if that was something they kept. Oh, by the way, when I oversaw Mom's care in the NH here, sister kept her nose out of it but let me know she was close if I needed her, and she is the only one who sat with me the night Mom passed away. So there is hope........
ASG........I wish some of your tolerance would rub off on me! I wonder how many other families that little PT has caused problems. I hope Aunt's attitude stays up and it sounds like you have made tremendous progress with her.....were you looking at the home in the town you live in? I was there once, years ago. We transported a little old lady, by court order.....called her the cat lady because she carried around a bag that she claimed her cat was in.....nope never saw it....and all the way down 13 Highway she screamed at us that she hoped we hit a semi head-on...............
I've about used up what little energy I had this morning.......sorry to say I was hoping some of the pain would be gone...Some of you are dealing with your own illness, some with interfering siblings, some with outsiders and I hope today you can get a little relief from your worries. Will check back in later,
Happy Trails,
Jam
SDPeg
My Mom was diagnosed with lung and brain cancer 2 months ago. Within a week, we had moved both my parents in with us (me, hubby, and 20 year old son) from 800 miles away where they lived with my sister. We did this for alot of reasons, including that I'm closer to good medical care. Now my Dad has been diagnosed with bladder cancer. So far, his is treatable and curable, but I am worried about the effects of treatment and that he won't be able to help as much with Mom.
I am so glad I found this site. Dealing with the cancers is bad enough, but my mother is mean, petty, and self-centered. This has been going on for years, but talking on the phone to her and the occational visit did not prepare me for having her live with me. I am in therapy and some days are a real struggle.
We had a good weekend with no yelling, only a few snide remarks from her, and an actual conversation or two, so I am happy for that. It has also helped to read that others face similar parents and survived.
If your bro wants to be involved in medical stuff he can ask - I would leave that up to him - let sleeping dogs lie - I think what your sis says about being the one available makes sense and maybe you are on the POA so all is in order. Maybe once you have a lighter course load, a periodic assessment of your mum could be sent to bro and sis. That may help them face the realities of her decline. Can you use Excel? Set up a worksheet - or do it in a Word doc with various check points - jam or someone else could probably help you with those or look up a list on the internet - then monthly or whatever check off how she is doing. Once the sheet is set up it will be easy to check it off and then attach to an email. It may help with doctors visits too. -a record. For example if that was the first time your mum did not recognize a family member I think that should be on there - it seems to me to be a significant memory loss.
Anyway that's my 2 cents worth!.
SDPeg
Kisses everybody else. I have to finish an endless work (a 200 pages translations and it's not finished yet... It is not Anna Karenina, it's a simple movie!) See you tomorrow night
Thank you so much for helping me. I know we are all busy with our lives/worlds. Sometimes when we have info it is nice to share it. I do appreciate whatever you can help me with. SDPeg
And isn't that something that the son she keeps on was the most worried... that speaks volumes to the way you are raising your kids Tina... I just give you lots of 'atta-girls' for doing such a great job with all you are doing.... seems that youngun understands something we all are missing.... from the eyes of a child... hmm, he has things to teach us.... hugs and prayers for you and Auntie, and I would figure out a way to give her the Ativan, put it in the sherbert... but make sure she gets it...... it will make your life a lot easier and she will be calmer.... love ya girl....