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    Hi All,

    Jo, not much has changed with mr j. The other week he supposedly hit one of the male CNA’s in the arm with his fist. Didn’t hurt him but still cause for concern. I don’t know if the young man was too rough with him or just what. It is hard to get a straight answer from mr j. and he has a tendency to fib. I didn’t get a chance to hear what the young man had to say but heard it from another nurse who wants his med dose up to what it was before.

    I am vehemently against that idea cause he can barely get around now. One of my sons had a disagreement with this same nurse and they debated the idea at that time

    The nurse practioner in charge of his case called and told me they were not going to do anything at the present. So they are charting his behaviors down. If they continue to have a problem ( and it seems mainly to occur in the late afternoon and early evening), she may suggest to give him the lower dosage in the morning and the higher later on.

    I haven’t heard from her so hopefully he is behaving himself except for a minor incident last week when he kept trying to leave the dining area and the same nurse kept trying to re-direct him back. From what she told me he tried to slap her hand but was unsuccessful. With mr j one never knows what to expect.

    To change the subject, I have known persons that weren’t seniors getting alzheimers. Some of these were from years ago so I really don’t think there is more of that today. I had a dentist that succumbed to it . He was only in his late 40’s or early 50’s. There was talk because of him working with amalgamated filings that contained mercury that is why he got it.

    I also think if it tends to run in the family one has a greater chance of getting it.
    In mr j’s family on his mother’s side, we know his mother had it, his oldest sister presently has it, another sister just one year younger is still very sharp in her mind. My husband had a younger brother but he died in his early fifties from something else. My husband has cerebral dementia as a result of complications from brain surgery.

    Going back further his grandmother used to walk the country roads and had to be placed in a mental hospital . This was back in the 40’s. The family believes she probably had some form of alzheimers too. Then to top it off her father was also believed to be senile as it was called back then . His daughter had to tie him up in bed or else he would roam off. This was way back in the pre twenties.

    That is some of mr j’s background. I feel guilty at times of not getting out to see him like I would like. But this new NH is a half hour’s ride for me whereas the other one was just down the block. Now with the cost of gasoline going sky high try to limit the little driving I do.

    The thing I try to remember is that I try to do the best I can concerning decisions of his care. I don’t like to bother our children unless absolutely necessary. They have families of their own to care for and they don’t need me piling more responsibility on them.

    Karen I hope things go as smooth as possible with your mil at home.

    Please All Take Care

    mrs j

    Comment


      mrsj I am always glad when I read to see how you are doing. You have mil as well and Jeannie is correct in living her life as well. My thoughts are if a person totally surmerged theirself in others troubles, it would not be long before that person coulod be as bad as the one they are caretakers for.

      I say this because I was a young person when I quit a job and went to stay all the time at a VA hosppital with daddy. Mother I thought was not able to do it all and yes she was still youngish. It took both of us tho and when it was over, I was a different person, and nerves not for the better. The last year, and especially the last six months of totally staying in hospital did it. I was surrounded by grief all all kinds and hardly any hope of any of the men I met of getting well. And so I know if it washed me out before 20, I shudder what something like that could and do to me now at a much older age.

      I know it may happen and I am grateful for those of you who do come online and say that a caretaker must see to their own self. You may never know who reads these posts and is influenced by your words of wisdom. I know I ammire you and Jeannie, Karen, Jo, all a great deal

      I came back to add that in the 90's when my troubles started I knew I was going to have some tests taken of my brain etc. I had read an article about alzheimers in younger people. I had also seen a lot of different kinds of things, hardening of arteries, andsuch that changed people (men mostly) on the VA ward while I was staying with daddy. I shared this with doctor and did learn how even back then they looked at the gray matter verses the white. Mine had already changed even then.
      Last edited by joy; 03-12-2012, 09:47 PM.

      Comment


        hello dear friends. I stopped in to check out how each of you are doing. Mrs. J., please take care of yourself, if you aren't well you can't do a thing to help Mr. J. I know you want to keep a check on him, but like someone else said the patient's don't remember whether you came yesterday or last week. It seems they are always in the "now" even with things you know happened a long time ago.

        I do wonder on the back-ground you gave for Mr.J. I have thought about this a lot and I tend to think it could be some "stray gene" or some such thing. My MIL's sister also had Alzheimers. She was in the same NH MIL was in. I see other little signs here and there. I certainly think it bears more research Now, not later.

        Right now I'm more concerned with your health. You know all to well that surgery takes a lot out of you and you had 2 major surgries in such a short time and with Mr. J's extra problems I fear you did not allow yourself to heal properly. Please forgive me if I am "crossing the line", it's only because I care so much for you.

        I am concerned about all of you cargivers. most of us have major health issues ourselves and it can shut you down in a hurry before you know what hit you. I have known all too many caregivers that passed on long before the patient. One was a very dear friend and maybe that is why I nag so about it.

        Although I didn't seem to take my own advise I learned a very hard lesson whe I ended up in the hospital.I'm still trying to work thru all that I was carrying at that time. Rest is most important. I have trouble sleeping sometimes and I will come here and more times than not I find my dear friends here because they can't sleep. Grab a nap here and there, that will help.

        Forgive me if I get too bossy. I don't mean it that way, I just care about all of you.

        take care, Jo s
        Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
        'cause you are the wind beneath my wings

        for my brother Ben

        Comment


          hey everyone ,

          i went to see my mom thursday and they had just given her the medication for anxiety. that sure works fast because she was talking so quietly and alowly and she couldn't even put a coherent thought together. she was trying to say a word and all that came out was gibberish. she was closing her eyes, so i told her i would take her to her bedroom soshe could lay in bed and be more comfy sleeping there. that was a mistake. she was so out of it and even though i was helping her into bed, she just got one hip on it and she was almost going to fall on the floor until i loudly told her to move up. then i lifted her legs and she was in bed, although she was all crooked. now i am worried that she might try to get into bed or do something else when she is so dopey like that and she might hurt herself.

          i talked to the nurse and she said my mom was behaving well the last 2 weeks, but she just didn't want to get up. well, i can see why. i'm still not happy with this med situation and i want her on a longer acting med so she doesn't get tired and dopey so fast and then the med wears off and she gets a little more cognizant.

          i went grocery shopping yesterday. i did it early and then i went and had my hair cut and i walked around the mall for a couple hours, just looking at stuff and enjoying being out of the house. sort of a "mental health" day for jeannie...lol.

          mrsj, my mom gets upset too, when the nursing assistants have to change her diaper or get her to take a shower. she argues with them and gets nasty. she used to tell me that the aide thatgot her out of bed in the morning jerked her by the arm. now i know this person and she is not the type that would jerk someone. i don't think it's fibbing when my mom or any person with dementia is telling you what happened. it's how they are perceiving it. remember, their reality is skewed by the dementia...so sometimes they don't even use the right words. i just take it all and try to put it in the context of "this is how my mom sees what is being done to her". it might not be the way it really is, but that is how it is for her .

          it does look like spring has sprung here. i pray for our loved ones that are still on their journey here and for those who are at peace.

          thank you for sharing and caring ,
          jeannie
          WE ARE BT!
          "The world is a better place when you're barefoot." Mark
          "Don't go there unless you know the way back." TC
          "...there will be an answer. Let it be." Paul McCartney

          Comment


            I probably won't be posting here anymore. To be honest I feel very left out. You are all care givers, I'm not one of you.
            My last post in Feb. had one reply.....I'm not just here to give info as to how my life is going/not going...how my end of life experiences with Vascular Dementia are going.......wish there was a posting site for people like me; they are out there but noone posts, puts their feelings out there. I'm not looking for pity, maybe that somebody out there is listening, I need to hear that someone is listening, reading, learning.......please don't bother posting regarding this post as I won't be back here.

            I do realize what you're going through even tho I'm not the caregiver, I understand what your loved ones feels, how you feel taking care of them, as my SO has to 'deal' with me and he not always understands after 8 years. "They' have now changed the life expectancy for Vascular Dementia from 3-5yrs to the same as ALZ - approx 8 yrs. And VaD patients usually die from the 'usual' strokes, pneumonia. I have a DNR; prone to pneumonia so if something takes me out it'll be one of those unless my heart has had enough altho I'm only person in family w/o heart problems.

            Last time I posted mentioned hallucinations, put on Seroquel which I took at low doseage, upped it, finally stopped at it made hallucination worse along with bad side effects.....so far, have less hallucinations, side affects have been better.
            I had one seizure where I sat stiff, couldn't talk, move, talk, no one home......my voice in my head told me to kill me. Have had that typ seizure since dx. Once I came out of it, headed for phone book, looked up hot line for suicide but soon I had control again, was ok, hasn't happened since. Was honest with my doctor, told him what happened, time to see physciatrist next week. Sure hope my insurance/medicare comes thru as she's very expensive......there's 1st appt with her, 2nd appt for something else (she probably talks w/other docs about me), 3rd appt is for what meds to put me on. Not sure I want any, side affects of all those type meds can be horrific....don't need that. Since stopping Seroquel, have only had one hallucination, yeah!!!, but do need help getting some sleep, getting to sleep faster so hallucinations don't start to begin with; longer I'm awake, faster they start, I hear things; I check every possible lock there is in house, even downstairs, garage so there's no way she can get in house unless she's got a key. ??????????? Weekends are worse So that's my update w/o getting into too much detail; you know I can get long winded.
            I pray things are going well with all of you, you're handling the 'pressure' which I know is demanding, emotional, and any other adjective you can think of as know it's hard on my SO......we're talking much more, esp. about the 'woman', I'm not afraid to bring it up anymore, this is my house, she will NOT be in it, and hopefully NOT in my mind one of these days. I'm not afraid to check house, check his room while he's asleep or awake.......I'm NOT AFRAID!!!.

            Like I said do not respond to this email, please......if you do care to, my profile has my email, you may do it that way. For those that have responded, I thank you so very much.......to you who didn't, I thank you for just being here. I've always had you in my heart, I've always loved you, learned how YOU feel being caregivers.....it's damn hard work for you, damn hard work for your parents too if you think about it, think from their perspective also.

            I love you all, will always.....I'll be around, perhaps just not here....please take care of yourselves, take times out for yourselves too, you always need time out for yourselves!!!......I love you sovery much...getting tired, have to go, more love, hugs, kisses, kat
            TMJ/shoulder/parotid tumor surgery, Scoliosis, Lumbar fusion for Spondylolithesis; now in entire spine. Herniated cervical disc, no surgery, high risk/Vascular Dementia (VaD), Breast Cancer survivor 12 yrs, Fibromyalgia, Osteoarthritis. Rapid transit small bowel/no weight gain, IBS, 'cusp'/Crohns; Diviculosis; myoclonic dystonia. VaD, my 8th yr, causes tia's, seizures, strokes, Parkinson's, Lewy Body Dementia

            Comment


              hey everyone !

              i didn't see my mom last week. i did see her today, though. she was getting tired after dinner and although she was saying real words they didn't make sense. i don't feel up to par yet, so i left as soon as she fell asleep. she looked so bloated today...i don't know from what. her legs were swollen more than usual. it just hurts to see her like this, but there is nothing i can do. there is nothing i can do. she is getting taken care of, i wish her diaper were changed more, but i can't say anything else is that bad. people should not have to spend their final days like this. i am pretty sure i will bring my mom home to die when the time comes. i cannot let her die there.

              there is nothing more to say, really. the final stage is here, i don't think mom know's who we are except that somehow she knows us in some way. the confusion is there all the time, more noticeable now with the increased dose of xanax to keep her calm.

              i wish kat had more people that had vascular dementia that would be able to communicate with her come here. i think she gets more support in the emotional support forum and i take no offense at her posting there to get more responses. some days i don't even like coming here...not because of you wonderful supportive people, but because i usually do not have anything good to post anymore. but, we have to carry on...so i will.

              thank you all for sharing and caring and walking with me ,
              jeannie
              Last edited by tic chick; 03-29-2012, 09:15 PM.
              WE ARE BT!
              "The world is a better place when you're barefoot." Mark
              "Don't go there unless you know the way back." TC
              "...there will be an answer. Let it be." Paul McCartney

              Comment


                Jeannie,I'm not in your shoes but I do have to say I was shocked about your wanting to bring your mom home to die. none of my business but I think it's a bad idea all around. she may not be getting 100% of the care you would like but then again she's probably comfortable there now & you might not have a clue what the cancer will do in the end.

                ((((hugs)))) Pati and slap me if you want!

                Comment


                  pati, (((hugs)))...and i will not slap you....

                  i wasn't talking about bringing her home now. i think mom would be too hard to take care of, plus she couldn't navigate around as easily with her wheelchair here as she does at the nh. i'm thinking more of maybe when she is critically ill, like the last month of her life or so. i don't even care if it's the day before she dies...i just don't want her to die in the nursing home. for some reason that bothers the heck out of my conscience.

                  i would have hospice here, of course, and i don't think if she's bedridden that it might be too much trouble. i'll have to see what's going on at that time exactly before i make a decision, though.

                  thanks for caring and saying how you feel. i know everyone here gives their honest opinions because y'all might have had a similar experience and it's always helpful to get opinions before you do something. i you all and i appreciate when i get feedback on any problems i have.

                  thank you for being here,
                  jeannie
                  Last edited by tic chick; 03-31-2012, 09:34 AM.
                  WE ARE BT!
                  "The world is a better place when you're barefoot." Mark
                  "Don't go there unless you know the way back." TC
                  "...there will be an answer. Let it be." Paul McCartney

                  Comment


                    (((HUGS))) Jeannie. I am oh so glad that there are fine people who do hospice and help us in our time of need. I did not call upon them with my mother because I did not think a broken hip qualified her. But a person who I knew that worked at hospice said (to late) for me that it could have been done. I know it would have made me feel better in the long run if I could have done that very thing, and yes even for a day. But you are correct, there is just so much you can do. I hope I am here to remind you that you did what you could if you ever need reminding. Your mother is very lucky to have a daughter like you.

                    Comment


                      Jeannie,we all comment based on our own experiences of course. I saw a red flag saying GUILT. now I don't think you have one thing to feel guilty about..... but I've said over & over it's a SELF emposed emotion.

                      and of course I flashed back to when my housemate's wife was dying. hospice was here of course. and I was only here once a week to clean back then or drop by with something she needed.

                      well one day the hospice nurse was new & unexperienced. she dropped the urine bag on the bed & yelled downstairs for my help. I ran upstairs (yeah in those days I could run!) to help her clean up the mess & change linen's,etc. I was so shocked to see this woman who weighed 85# & had no hair. wouldn't forget that anytime soon. but the very worse of it was her last 2 weeks of life. she screamed the entire time I was here to clean. it was awful. plus she talked about alot of stuff that made no sense. I was told over & over she was not in pain. and it was the morphine making her talk gibberish.

                      no dignity in dying for her. plus she outlived what the experts had said would happen by at least 2 mos.

                      you need to discuss this with her doctor of course. you might not even be allowed to bring her home. and talk it over with your family. I think you still have a son @ home?

                      Jeannie,we have followed your story from the beginning. you have always been a caring,wonderful daughter that has left nothing unturned in helping her. you've done the very best you can possibly do.

                      we'll be here for you regardless of how it goes.

                      ((((hugs & loves)))) Pati

                      Comment


                        I went to see mr j yesterday. Lately he has been sleeping most of the time. He has refused any therapy so they had to discontinue it. When he is up he is now in a wheel chair as he no longer is as mobile as before. They have an alarm on his bed and one they attach to the wheel chair if he should try to get up without assistance.

                        I had them get him up for me and then I wheeled him into the dining area. I usually bring him some snacks to eat when I see him. He seems to really enjoy that.
                        He doesn’t say much anymore. When I talk to him at times it seems his mind is somewhere else. The way he is right now it seems to me that he is going downhill rapidly.

                        Not much else is new just about the same old same old. I would like to have him at home too but there is no way on” God’s Green Earth” that I could manage it both physically and financially.

                        I guess in the months ahead what will happen will happen. There is not much more that I can do but let him know that I am still around.

                        Jeanne
                        my sil had home hospice for her husband. She had to have him placed later in a hospice setting . (it wasn’t a NH but a facility just for terminal care”. He was still a little mobile and she couldn’t lift him when he would fall or even get him off of the toilet. She had her kids helping but that still was not adequate.

                        That situation was a bit different, he had and died from congested heart failure but he was still sharp in his mind. He made the decision to have the pacemaker and defibulator unhooked and after about a few weeks he died in that hospice house. My sil and their daughter where both there when he passed.

                        I always remember you know when these medical professionals would ask “Do you know where you are at”? My sil’s husband being a comical person up till the end would reply to them “Why don’t you know where you are”. Another of his favorites when they would ask “Are you in pain” would be answered “no she just left” referring of course to his wife.

                        Take Care
                        mrs j.

                        Comment


                          Mrs. J,it does sound like he's declining rapidly. I'm thinking that's a blessing compared to many years of being in a NH. it must be miserable for you to see his decline. ((((hugs)))) Pati

                          Comment


                            hey everyone !

                            mrsj, your sil's husband sounds like a hoot. how wonderful that he was cheerful until the end of his life and chose to end his life the way he wanted. most of us don't get that choice and i think it requires greater courage to make that kind of decision when you are still fully mentally aware of the implications of your decision.

                            it seems like there are plateaus after rapid declines that last awhile, too. my mom had a rapid decline this past year, now she kind of seems to be in one place for the last 3 months. i really don't want to bring her home because i feel guilty. i'm talking about knowing that she is going to die soon and letting her spend her final days out of the nursing home and with people who love her. i just don't like the thought of her dying alone and me getting a call one day and it's the nursing home saying that she passed during the night or after lunch...no one would be there with her. maybe she might not be aware that she is dyng, but i would.

                            pati, that's the beauty of being power-of-attorney. i don't have to get a stinking doctor's permission to do what i want! i can hire an ambulance to bring her here and have a bed and hospice care ready for her. that's why i had the power to override a doctor's decision to give my mom those antipsychotic drugs...because i have power-of-attorney and in MY opinion, it's not beneficial to my mom. i could check her out of a hospital also, if i thought they weren't doing anything for her or i didn't want her to get any more treatment for something.

                            i want everyone who reads this forum to understand that a power-of-attorney gives the FAMILY the right to make end-of-life decision's for their loved one's when their lo's can't. of course a family can always consult a doctor for their opinion, but the final decision rests with the family. i also want families to become educated about their loved one's disease's so that they can make informed choices about what course to follow. i think it all comes down to quality of life. my mother today has no quality of life. that's why i chose not to have surgery for her colon polyp. if it's benign or malignant, whatever will happen will happen. why spend thousands of dollars for the privilege of letting your loved one suffer a year longer than they would have?

                            there was a study done a long time ago that said most of the money spent on elderly care is spent the last few months of a patient's life. sure, no one wanted to see mom or dad or grandpa or grandma die, so they said "yes" to expensive operations that bought their loved one's little time and that time was usually spent recovering from the operation. i hope we are getting wiser and stronger and letting our loved one's die with dignity.

                            anything else would be a shame.

                            thank you all for sharing and caring and walking with me ,
                            jeannie
                            Last edited by Moderator #7; 04-09-2012, 07:48 PM.
                            WE ARE BT!
                            "The world is a better place when you're barefoot." Mark
                            "Don't go there unless you know the way back." TC
                            "...there will be an answer. Let it be." Paul McCartney

                            Comment


                              hey everyone!

                              i saw my mother yesterday, a friday instead of my regular thursday. i decided i wanted to see her before she got her anti-anxiety med at 2PM so she would still be awake.

                              she was in the dining room, sitting in the sun and she smiled when she saw me. my favorite nurse's aide was there, i found out she was only working weekends cause she's studying for her nurse's exam in early may.

                              so, i was able to have at least a little conversation with my mom. she seems so sad because i still think she knows what she wants to say and it's frusterating for her when i don't undersatnd what she is trying to because the right words aren't coming out anymore. she smiled when the aide talked to her and she knew i was her daughter when the aide asked her who i was, but she didn't know my name. she's also forgetting my husband's name, which kind of pleases me....yes, i am terrible for thinking that and it has irked me too long and i should be more mature, but sometimes i am not mature, i am a little kid and i want my mommy to remember MY name ...

                              so, i stayed until my mom was almost finished with her lunch. it was weird, because even though she could say i was her daughter, she asked me how my mother and father were . i asked her if she knew who my mother was and she said "no". i said, "you're my mother", and she kind of rolled her eyes and looked away like she didn't believe me. so, it's always a mixed visit, sometimes part happy, part sad and part humorous. i'm happy she can still talk and respond to people and smile once in awhile. i also hope she has some peace once in awhile, too.

                              thank you for sharing and caring and walking with me ,
                              jeannie
                              Last edited by tic chick; 04-07-2012, 12:57 PM.
                              WE ARE BT!
                              "The world is a better place when you're barefoot." Mark
                              "Don't go there unless you know the way back." TC
                              "...there will be an answer. Let it be." Paul McCartney

                              Comment


                                Jeannie,of course you were hurt when your mom remembered your former husband's name but not yours! you are only human afterall. laughter is better than having a screaming fit I'd think. well actually it's fine if you want to scream Jeannie!

                                I want to thank you & all the others who post here for sharing your stories. I've learned alot & some day it may come in handy. it certainly brings Alz. into real life.

                                (((hugs to all))) Pati

                                Comment

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