What's Happening in our Caregiving World?

[Jo6]

Pati dear, my heart does ache for you. You have so much to handle, but I'm afraid it will get you down. Try to remember that you need to care for yourself first!! I hope your own health is still improving. I'm very proud of you!

As to HM, that's a tough one. In some ways he seems to be going down the path Mary did. Then I think of all the times she would "change" over night. Usually getting back to some of her prior behavior. Always keeping us guessing which Mary we would deal with today.

Just don't waste too much time trying to put him in a certain class. It may change anytime. Try to ignore him as much as possible. that may sound harsh, but for our own sanity we have to do that some times.

As for your Mom I am amazed with how well you seem to handle her problem. It's too hard to handle her from so far a way. I for one think you are doing a great job. I would like to talk to you more about her if you would like to.

You take care dear Pati. Never doubt your own self. I'll write more later.

(((((( Pati)))))) s from Jo

[tic chick]

hey julia and pati !

nice to see you julia and pati .

pati, i think sometimes the signs of dementia and schzophrienia can seem the same in all stages of both diseases. however, schizophrenia usually doesn't get worse, unless you don't take your meds. if hm is taking his meds for the schizophrenia, then he shouls be okay. schizophrenia is more of a chemical imbalance that causes your perception of reality to be different than what it is.

dementia is more of the forgetting part. if hm puts things in weird places or forgets where he put stuff, that seems closer to dementia to me. personality changes in schizophrenia and dementia are harder to tell apart. blaming you is easy, cause you are there to blame . i would say if he is going overboard and you see other personality changes then he probably has dementia. i can imagine the dual diagnosis of schizophrenia/dementia is very hard to work with. if he doesn't want to get tested, he'll never know.

i agree with julia, though. just stay out of his way and ignore him. if he yells at you, tell him to stop because it's his own fault he forgot and then remove yourself from the argument. go to your room or somewhere else. i'm sorry you have to take chit from him while you are recovering from your own problems.

you've already decided how to deal with your mother and it's okay whatever you decided. you know how she is and that it doesn't make sense to talk to her. if you can handle a phone call every week and calling a neighbor to find out what's really going on, that's good. you have to take care of yourself!!!

(((pati))), you are doing so well! i'm happy to see you post because you are getting better and anything you do for yourself helps you regain what you might have lost. keep up the good work!

((((hugs to you pati )))) and ((((julia )))),
jeannie

[Jo6]

It's been awhile since I have been to BT. I'm a little shell shocked to see no activity. I hope it's because everybody is staying in and keeping warm. I do so worry about our caregivers, after all you all need a respite now and again.

We have had quiet an ice/ snow storm around here. I don't even stick my head out the door.

I had an uncle that died this week. He wasn't much older than me. It was so sad for me. His wife has Alzheimer's Disease. When he first told me he said the Dr. had told him it was "the fast kind". That has been at least 8 or 10 years ago. She has been in a NH about that long. He couldn't handle her even with family helping out. Details have been hard to come by, but I know he will be buried tomorrow.

It's even sadder for me because I won't be going . I had a bone scan done Monday and the news from the Dr. was not happy news. It seems my bone lose is much worse than thought. the Dr. want's me to go on something I know nothing about. All info I have gained was not good. I am not going to go blindly on another strange med.

I miss everybody and hope you are alright. Jeannie, how's your Mom? Pati how are you getting along with at least 2 LO's to care for. I'm afraid you are not taking care of yourself, please don't forget to take care of Pati.

All others, my prayers and thoughts are with you all. Hope to hear from you soon and hope it's good news.

I love you all, Julia s

[joy]

I came here hoping to find out more about those also absent from emotional support. dear Julia I so hope things get better for you. sounds like your bone are very fragile. not a good thing. please be careful as breaking anything would be bad for you.

I also am wondering about pati. I hope one of her sons will take care of her if pati needs helping. and I am hoping that Jeannie is staying busy. if her snow stayed as long as our snow and ice, I feel for her and her dogs. must keep her busy.

[tic chick]

hey everyone !

well, it's raining here today, joy. the snow has all melted and my ground is mud, but i think winter is gone. the temps are up to normal for this year.

i went to visit my mom yesterday. my daughter drove me and we went to the nurse's station on the new side of the floor my mom is now at. i was asking the lpn where my mom's room was, and my daughter said to me, "she's right here"! and so she was. i feel so disconnected when i visit the nh. it doesn't seem a natural place to be...the warehouse where the living dead are waiting. sorry, i am so bummed out today.

my mom shouts everything. her voice is like a radio with the volume turned up permanently. she talks gibberish, too. maybe if she shouted stuff that made sense, it might be better, but only a few words come out that i can understand. i hugged her and she kissed me profusely, then she shouts in my ear, "no more"! an aide just touched her lightly and she recoiled. then another aide comes in and she is so sweet. she asks questions about me and my mom. she talks to my mom as if she understands and nothing is wrong with my mom. she looks maybe 24. i gave her a hug when i left because she was so sweet.

i wore some really nice long earrings yesterday, vintage ones i bought. i always wear something bright or noticeable just to see if my mom notices. yes, she did. she touches the earrings and they swing back and forth. then she touches my hair....lol. i KNOW somewhere deep in her mind she knows that my strawberry blonde hair is not my real hair color. i think she remembers me as a little girl with very dark brown hair. i've been coloring my hair since i started going gray fast in my mid-30's from thyroid disease.

but it is so frustrating for me and prolly for her because she cannot say anything that makes sense. i try to say something appropriate to her tone of voice. it is a private game between me and my mom.

the shouting disturbs me. my mom was a yelling mom when i was growing up, so maybe this is an extenuation of that. or maybe she is yelling because she is in pain somewhere. i keep thinking about the polyp in her colon, the ticking bomb. i ask the nurse for the results of her last potassium test and her hemoglobin. her potassium is okay, but her hemoglobin is slowly going down...not terrible yet. i have a thought about letting her just die from her next urinary tract infection and quickly discount it.

i come home and wonder whether it was worth to go see my mom or whether i should go more often. it is a lose/lose situation. i feel terrible if i go, terrible if i don't go.

my comfort is my mantra...i can't do a damn thing about it. i can't do a damn thing about it.

thank you for sharing and caring and walking with me ,
jeannie

[joy]

you worded all of it right, the wArehouse. oh how terrible it is for anyone in that place and even more awful I think perhaps for those with loved ones in the warehouse. it makes sense to wish all the pain and suffering up for those caught in that trap of a place.

Jeannie I think you know that some visits are needed to see that things are going right for your mother. well as right as possible. I say this because my aunt that did not talk anything but gibberish etc (her dementia was from a different cause, but dementia all the same) well she ended upwith such a big hole and deep wound on one of her hips. it was a bedsore and I have never seen anything as astonishin g as this bedsore was!. so it is good to check them some. I don't know how my cousin let this get so bad. I knew she visited and perhaps she did often, who knows. b ut it was aterrible sore that only added heaPS OF PAIN AND SORROW ON TOP OF AN ALREADY oops sorry for caps unbearable situation.

unbearable but it still went on happening for ages. this was a long and horrible death. my daddys' cancer for his last months were something bad to go through but truthfully i'd say my aunts life was just as equally horrible for her and anyone who loved her.
I pray that you have the strength to keep carrying on being
a watchful personfor your mother. I too woul;d think that she sees you as her child or atleast I am so hoping so. also hoping that all this heartbreaking, pain and such does NOT last much longer. i like seeing you in my mind out working inyour yard or playing with your dogs. i know you are a good daughter and so don't ever doubt that you are Jeannie. take care of yourself.

[tic chick]

thank you joy !

your words of understanding and sympathy meant so much today. it's also a help to me that you know what i'm going through because of what your aunt went through.

most days are so hard now. the aides all tell me my mother is so sweet. i feel they are being nice to me, because i don't consider her yelling or gibberish to be sweet. it is depressing. i keep thinking of that one day, maybe a year, year and a half ago already where i had such a good visit with my mom. it seems so long ago.

the yelling didn't start just one day. it started slowly, just every so often, then escalated. now it is constant when i see her. it took maybe 6 short months to go from a little bit to all the time, though. i know this decline is rapid. i know this is the end stage of this disease. my therapist says i am grieving now and i will still grieve when my mom has died. yes, probably...but not because she isn't alive to live this depressing life that she has for the past 6 years, but because i don't think she had much happiness in her life and then alzheimer's got her and her last years were so horrible. horrible to watch for me and my sibs. i don't know what she thinks about this and i pray that she is not in any distress, although that seems far-fetched to believe.

jeannie

[tic chick]

hey everyone !

i talked to the associate of my mom's doctor last week with concerns about my mom. she is also a doctor and she suggested hospice. i said i had tried that about a year and a half ago and she wasn't accepted. the doctor said she would talk to the social worker and have hospice come out to see her again. so, they saw her and evaluated her and decided that with her condition, they wouldn't be surprised if my mom died in the next 6 months. that is the criteria for hospice.

so i talked to the representative of the hospice and he was very nice. i talked to the hospice nurse and i didn't get any warm vibes from her. i talked to the chaplain of the hospice and she was also very nice. so, there are always people that you connect/don't connect with.

they are supposed to go over my mom's meds with the doctor and see which ones aren't doing anything for her. i was supposed to get a call from the nurse last week and hear what they decided, but i never did. that's kind of why i didn't connect with the nurse. i hope i get a call tomorrow from the other hospice nurse who will see my mom while this one is on vacation this week. if not, i will call.

basically, my mom will get visit's from the chaplain and the hospice nurse twice a week, so she will have more attention at the nh. when i saw her on tuesday to sign the hospice papers, she was so out of it. she was using her fingers to eat, where before she always used a fork and spoon. that is a decline. she was asleep and when i walked into her room, she just looked at me and said nothing. a blank stare.

i told my sister yesterday about putting my mom in hospice, but she didn't fully understand. i think she might have had a drink and been a bit high. i'll tell my brother soon. i had talked to my brother about 2 weeks ago, telling him about the shouting and how i felt. i just threw out the thought that maybe it was time to plan to let mom go. my brother didn't answer right away, but he talked about her behavior. he said, "how can mom be so bad if she can ask you how grandma is? doesn't that mean she knows who you are"? i don't know the reasons for that, but i don't neceessarily think she knows who i am or who grandma is. it's just something still caught in her limited memory loop. then my brother said, "maybe we should just ask the nursing home what they think we should do". well, that's just a bunch of denial chit to me. he knows i have power of medical attorney over my mom. i think it would be easier on him if my mom just died than for him to talk and plan a peaceful death for her. same for my sister. i get the feeling that they would just let her go on until she died by herself. which would be how much longer? which would mean how much pain would she be in? which would be would she be mobile or bedridden with the polyp turned to cancer and metastisized throughout her body and brain and comatose?

i feel so alone again making these decisions. i am strong enough to, thank God, but i want my brother and sister to be okay with my decisions. maybe that is too much to ask? maybe they never will be? maybe they don't want to think about it?

i don't know.

hospice was a good start. i now have other people seeing my mom and her behavior and being able to put it in context, like is she in pain? is she having good days and bad days or are all of her days bad now? i will keep tabs.

as i said before, no one wants to see a loved one die. i have accepted my mom will die. now it only remains how she will die. i read the views of my church on refusing medicine to keep a person alive and they say that it is not euthanasia. that is a comfort to me, because i know that our Pope John Paul 2 refused antibiotics for a urinary tract infection when he was in the latter stages of parkinson's disease. he passed away peacefully after 7 days from blood poisoning. he chose to refuse medicine and die. he gave himself a death with dignity.

that is all i want for my mom.

thank you all for sharing and caring and walking this journey that i feel will soon come to an end for me and my loved one ,
jeannie

[tic chick]

hey everyone !

thank you all for sharing and caring and walking this journey that i feel will soon come to an end for me and my loved one

when i wrote that, i was getting strong feelings about my mom, feelings that something was going to happen to her.

last week tuesday, i signed papers for the hospice to examine her and see if she was eligible for hospice care. wednesday, i got a call saying she had been accepted into hospice. i am so glad i did that, because if you read my posts in the emotional support forum, you know my mom fell late sunday evening and broke her femur bone very close to her hip. it was broken completely in half, not just splintered. the nursing home said she fell out of bed. unless they saw that, i really doubt it. her bed is maybe 2 feet off the floor. i'm betting she tried to stand and get to her wheelchair and fell forward. the femur bone is the largest and strongest bone in the body. it goes from the bottom of your leg to the top of your leg.

i went to the hospital at 130am monday morning and my mom was in the er. she was mved to her room at 330am. i stayed there because i knew i'd have to answer questions about her and i wanted to sign a "do not resuscitate " order right away, so there would be no questions about that if something happened while i was not there. always bring my power of medical attorney papers for the nurse to copy and put in my mom's chart. i also wanted to see any doctors that would come scurrying into her room in the morning.

i went home at 930am. i talked to 3 nurses, one aide, 2 doctors. it was worth staying. i brought my tea stuff with me and a wool blanket because hospitals stay so cool and i always get cold in them especially when i am stressed.

i got a few calls from hospice workers on tuesday and a call from a hospice social worker who was so extremely nice.

my time on tuesday was spent talking to my brother and sister about my plan for my mom and asking if they wanted to treat her with surgery. she would be in pain after surgery. the edges of the bone would be pinned together, but they would still rub against each other's rough edges, which is what causes the pain. she wouldn't participate in phycial therapy afterwards because she is in the late stages of alzheimer's and she would say no. she can still say "no"...and very loudly. she would probably never get back into the wheelchair and be able to paddle herself around the floor.

my mom had a poor quality of life before the hip fracture. it is worse now. my brother and sister seemed to think she would breeze through surgery and be back in her wheelchair in no time. the anesthesia from surgery causes even more confusion for late stage alzheimer's patients. it takes longer for them to recover and get back to their previous state, if they ever do. my mom is still eating. she might lose her appetite. deliriums are sometimes a problem for late stage alzheimer's patients who have had anesthesia during surgery. i also worried about my mom's heart being strong enough for surgery. she would have had to be cleared by a cardiologist, but still he cannot guarantee she would survive. she has the polyp for 3 years already. my gastroenterologist said it would eventually become cancerous, if it wasn't already cancerous when they found it. 30% of people who have hip surgery and have mid to late alzheimer's disease die within the first year after surgery. many break the same hip again. many just decline and many die from secondary infections, like pneumonia.

i cannot save my mother from death. i can only decide what kind of quality of life she will have until she dies and now i can only decide how much she should suffer. the only good thing to come out of this is that my mom will be bedridden and if she gets an infection or pneumonia, i can bring her home to die the last week or so of her life. she will not die alone in the warehouse. i will not get a phone call in the middle of the night saying my mom is dead. my first view of her after she dies will not be in the funeral home mortuary.

my brother and sister wanted her to have the surgery. i listened to their reasons and i slept on it overnight. i decided they do not see the bigger picture of the quality of my mom's llfe. even if she got better, what would her life be like...maybe worse than before. then what would happen if her heart started failing or the polyp ruptured or became cancerous or has already spread? they want to hold onto her until she dies suffering. my brother said to me yesterday, "why don't you ask the doctor's what they think we should do? aren't they supposed to know what's best"?

he doesn't understand we can decide for her. we do not have to ask doctors. we are civil people.

my sister was in the room with me this morning visiting my mom. i had a chance to tell her how alone i felt after i had my mother tested by a psychiatrist with over 20 years of experience in diagnosing people with neurological brain disorders. it was november 6, 2008. the doctor told me, my sister and brother that my mom had moderate to some severe areas of dementia. because my mother said, "i don't have alzheimer's. the doctor just owns a bunch of nursing homes and they aren't making him enough money so he wants to get more people in them," my brother thought that was such a well thought out statement, that the doctor was wrong about her dementia. my sister was working, drinking and taking some care of her kids. she wasn't there for herself, even. i expected more from my brother. they said we would get togethr and talk about this, but no one every called me for a month and a half. on december 14, 2008, when my mom was in the hospital, i told the social worker she couldn't take care of herself anymore and i wanted to put her in a nursing home. unfortunately, she spent 2 weeks in a psychiatric ward, getting amphetamines and antiopsychotics. she was afraid, delusional, hysterical. i told my sister i felt so alone making this decision instead of having us three sibs make it. i said i felt terrible guilt that she had to be placed in the psychiatric ward for 2 weeks, from dec. 14 to december 31, over chirstmas, until she got into a nursing home on january 1, 2009.

my sister apologized. i accepted and she said she wanted to support me now. i said i was happy about that. i said i wasn't angry at her, that from today on, we would be a team and the past was the past. i am still going to tell my brother how i felt at that time...since he dismissed this doctor with 20+ years experience who diagnosed my mom with alzheimer's and now he thinks the doctors have all the right answers for my mom.

i think my sibs are good people. they just work still and have no time to think of stuff like this. i had to find my brother in hilton head island off of south carolina to tell him my mom broke her hip, cause he was on vacation. i could never go on vacation without telling anyone my plans and leaving phone numbers, because i have the responsibility for decisions for my mom. my sister and brother don't.

i hope i don't sond bitter. i am not. i don't believe in anger or bad feelings about the past. yes, i remember, but there is nothing to do about the past. it's gone. today is the only day we have. i just want by sibs to be more involved and support me with my mom and i wanted to tell them how lonely and guilty i felt 6 years ago and hope they care enough to support me and my mom in the last part of her long journey.

thank you all for reading this and for sharing and caring and walking with me ,
jeannie

[dawnmn]

My brother and his wife thought my dad was faking it. This had made me so mad. My dad had P.I.C.K.S. he wasn't faking it. But like you, you have to move forward otherwise it will drive you crazy.

Jeanie, your such a great daughter and you are doing the best that you can for your mom. Keep up the good work of taking care of her. Here's a hug for you, (((HUGS)))

[tic chick]

thank you dawn !

i'm always puzzled why people don't believe or even notice a person has a serious illness like dementia. i could see something was wrong with my mom and then as she got worse, i knew she had dementia.

i have heard of pick's disease and i know it is a form of dementia. if you'd ever want to tell your dad's story here, i would be interested in hearing it and knowing how it's different from alzheimer's. i remember kat had a form of dementia, maybe it was pick's too.

thank you for the hug. i needed it yesterday when you gave it .

and since you can't give a hug without the other person hugging you back, here's one for you....

(((dawn))).

jeannie

[tic chick]

hey everyone ,

so my mom went back to the nh late on 4/22, a tuesday. i couldn't get to the nh on wednesday, so i went on thursday. i had called the hospice wednesday afternoon to make sure she was getting all her pain meds because i called the nh and there was some kind of confusion as to what meds my mom should be getting. the hospice nurse on call that evening went to the nh and made sure all the meds for my mom's pain were written and she wrote orders for the hospice bathing team to come and give my mom a spongebath 3 times a week. so thursday morning, i called veronica, the nurse assigned to me. she was on her way to the nursing home and i once again told her that i wanted my mom's pain controlled and that the other nurse had gone down there last night and made sure my mom's pain meds were written down. i asked her if she was going to be at the nursing home for awhile. she said she would be there for about an hour.

i got a ride to the nursing home and when i came up to the second floor, the hospice nurse, veronica, was sitting in the nurses station. i talked to her and she said she had seen my mom when she came in and that she was getting a sponge bath right then. i said, ok, i'm going to go down there and veronica said she was going to another part of the nh. i walked to my mom's room and heard her screaming. i went to the bathroom and came back. i went into her room and the spongebath team was giving her a spongebath and she kept screaming even though they were doing it gently and moving her quickly. they finished and i fed my mom lunch. she still kept moaning out in pain 20 minutes after she was settled down. i went to the nursing station and asked an lpn when my mom had last gotten her pain meds. the nurse looked in her chart and said that morning at 930. it was now almost 1pm. the nurse came and i told her to please give my mom some morphine, that she was supposed to be getting it every 2 hours and she hadn't gotten anything for pain since 930. she said she would and i went home. i was so angry at the hospice nurse.

so i called veronica at around 5pm that afternoon. i asked her, did you check my mom's chart to make sure she had gotten her pain meds before she was going to get the spongebath because i walked in on her during the bath and she was screaming? veronica said she had looked in on my mother when she got there earlier and she saw she was fine and she didn't know she was getting a bath then (LIAR! because she told me she was when i saw her that afternoon). i said, you told me she was getting a spongebath when i saw you. she said she knew the bath team was in the building, but she didn't know when my mom would get her bath. so i asked again. so you didn't check my mom's chart to make sure she would get pain meds before her bath? i said you are supposed to be my eyes and ears and my mom's nurse. she said, jean, i know you're angry, but i am only here for an hour twice a week. i said, yes, but you were there for that hour that she was supposed to be pain free for her bath. i said that the nh nurse told me she hadn't gotten any pain meds since 930 that morning. veronica said that the bathing team aide should have told her my mom was in pain (this woman was a piece of work!)! i said, veronica, she is an aide, you are my mom's nurse. this was YOUR responsibility. she finally admitted she should have looked at my mom's chart. i hung up as i thought that was the end of the conversation.

i called the hospice nurse who was on duty, the same one that had gone down wednesday night and made sure my mom's pain meds were all written up. i told her what had happened with veronica and my mom's bath. she apologized and she said she would tell the nursing supervisor of the hospice and i would be getting a call in the morning. i did get a call from the supervisor in the morning and i repeated my story. she apologized and said that she took personal responsibility because she knew we had talked about my mom being pain free because i had opted for my mom not to have surgery, knowing she would have good pain control. the supervisor told me veronica would no longer be at my mom's nh and i would be getting a new nurse named cheryl. cheryl called me the next day and i talked to her for 45 minutes. she said she was calling my mom's doctor and tweaking her meds. so i saw my mom saturday and she had a new bed that had an air mattress to protect against bedsores and she was on a fentanyl patch that lasts 3 days and she was getting her morphine every 2 hours and her ativan and ibuprofen, also. i said i wanted her to get the meds without the nurses asking if my mom was in pain, because it is easier to keep a patient pain free than it is to bring pain under control once the patient is screaming. she agreed with that and wrote the orders that way. i also called the director of nursing at the nh and told her that i wanted my mom to get all her pain meds without being asked is she was in pain and i asked for her help to do that. she said she was sorry what had happened to mom during her bath and she would make sure her nurses knew to give her pain meds around the clock.

so i saw my mom earlier this week, on tuesday. she was able to open her eyes when i touched her shoulder, but she would be sleeping the rest of the time. she could eat if someone fed her. my mom has an increased risk of pneumonia because of the meds, they depress her breathing and of course, she is not moving much.

i am worn out. i hate incompetence in people who are supposed to be doing their job and they're not. if i can think that someone should have pain meds before they get a bath and a nurse doesn't, i can't work with her. my main concern is my mom, not checking up on the nurse.

i'm working outside when i can. it's been raining off and on all week. a lot of my plants are coming up. so much green! the rhododendrons bloomed 2 days ago. they have such pretty, showy reddish-purple flowers! it calms me down so much to work in the garden, silently pulling weeds and doing other chores. the dogs are happy to be spending time outside.

thank you all who read this. i am missing all the people that posted here even though i know why they are not here. i wish them strength and pray their own health problems are resolved!

thank you so much for sharing and caring and walking with me ,
jeannie

[Jo6]

Oh Jeannie, I so feel for you . Please forgive me for not being here more. I have been back in the hospital I think twice since I talked to you on the tele. I am fighting with every ounce of strength I have to get back on my feet.

You all have been right here helping me along this horrible road and I want to be here for all of you! It's going to take some time for me to get back to some kind of normal, but I will be here in body as well as sprit.

Jeannie, I'm so sorry your Mom is having such a hard time. Please take care of Jeannie, first and formost.

I have missed everybody and I will be here as much as I can be. I haven't forgotten any of you and would have been here, but I want to get back to some strength so here is my first installment.

Jeannie, please hang in there and know you are loved and many prayers are going up for you. I will bee back as soon as possible.

My love to all of you, Julia

[tic chick]

hey everyone!

julia! so nice of you to pup in! i hope that means you're feeling a bit above the weather ! thank you for your always wise words...it's been a long month.

so, i am seeing my mom twice a week. the hospice nurse is on the ball. my mom is very comfortable, yet alert when you wake her up for meals or talk to her. the hospice ordered a wider (bariatric) bed for her, because the twin bed size made it difficult for the bathing team to role her over far enough to sponge bathe her properly. the bed was ordered on a monday and it was there by thursday.

i saw mom last friday and it is so heartbreaking to listen to her try and communicate. she can say simple, 2 or 3 word phrases, but when she tries to get out a sentence of her thoughts, the words do not make any sense. i try to go by her tone of voice, but lately she has been agitated? maybe in some pain? or whatever and i cannot respond to her tone. so i just say, "everything's okay, mom, i'm here". somehow i don't think that's enough.

i have had this nagging doubt about my mom just falling out of her bed and completely breaking her femur in half. i could see maybe slightly fracturing it (partial break), but a complete break? then this aide who is very competent told me he saw my mother fall out of bed. well, he seems like a nice man and he is very competent. but maybe he was just trying to make me feel better (?), cause i would hate to think he just lied to me. the hospice nurse told me she was on duty the night my mom fell. she and the head supervisor of nursing at the hospice went down to the nursing home the night my mom broke her femur. the hospice nurse said there was also a staff meeting of nursing home personnel the following day where they discussed my mom's fall in order to see what might have been done wrong and how things might be improved. the hospice nurse told me my mom climbed out of bed and onto the tray table with to get to her wheelchair. she fell off the tray table and that's how she broke her hip.

maybe i didn't want to know that so badly now, but i am thinking as a person with all their mental faculties and i would be scared knowing i was going to fall. thank God my mom doesn't have that kind of cognizance. i don't understand why they don't tell you the truth. this probably never happened before and probably will never happen again. i know people with alzheimer's cannot tell what they are doing is dangerous. i know the nh is afraid of being sued. that tray table has prolly been close enough for my mom to try something like that the last 2 years. it just never entered her head until the day she did it.

chit happens. the only thing i know is this happened on a sunday night at 1030. they prolly had 2 staff members tops on the floor at that time. people call in sick, can't come in, don't want to come in or the nh hasn't hired enough staff. that is the main problem i see. maybe if there were more staff just looking into every room during the evening, they might have seen my mom trying to get on the table, but that is just a supposition on my part. more help would help, though.

this is wearing me emotionally. i saw my therapist and that helped. basically i need support for what i am doing. the hospice staff is wonderful at giving me that. the nurse gave me her home phone and the social worker calls me every 2 weeks. it helps a lot.

thank you for sharing and caring and holding me up on this part of my journey with my mom ,
jeannie

[tic chick]

hey everyone !

so, here i go with "tales of incompetency at nursing homes". again.

i was visiting my mom last week. i got there about 210pm. she was in bed, awake, agitated, breathing extremely fast and hard and sometimes putting her hand on the spot where her femur is broken. i knew my mom prolly got her liquid morphine dose at 2pm, so i waited about 10 minutes, thinking it woud kick in. it didn't, so i went to the nurses station. i told an lpn my mom's symptoms and she said she would be right there. i went back to mom's room and the lpn came in a few minutes. she took my mom's blood pressure, which was ok and her oxygen level, which the lpn said was low at 90. then she left.

so i sat with my mom and stroked her hand, trying to calm her. she said something in polish that was the most coherent thought i have heard her say in awhile. she said, "who would have believed this would happen?". so i answered her in polish, "no one". i tried talking to her a bit more in polish, but i guess she was too agitated. i went back to the nurse's station at around 3 and i asked the same lpn when was my mom's last dose of morphine. She said it was at 2pm. i said could they give her another dose sooner than 4pm, cause i thought she could be given another dose an hour after if the first one didn't work. the lpn said, "she's only allowed to get morphine every 4 hours". i said, "every 4 hours? i thought it was every two hours". the lpn answered, "yes, ma'am. every 4 hours". i thought that sounded a bit defensive so i said, "would you please check her chart and make sure?". so, the lpn looks at my mom's big chart and sees the doctor's orders. and they are written for every 2 hours. she goes and gets the rn for the floor and points out the discrepancy between my mom's chart and the orders written in the drug book, which is a small book with each patient's name and the dose of narcotic they are supposed to receive, when they received it and the signature of the person administering the narcotic. that is required by law. the drug book had my mom's dose of morphine at every 4 hours.

so, the rn is giving me a spiel about how they can't give narcotics sooner than scheduled....blah, blah, blah. i said, "well, if it was written for every four hours, then the dose she got before the 2pm one was at 10am. and who knows how many times that every 2 hour dose was missed? she is in pain now because she's hasn't been getting enough of her pain meds". so, nothing was said to that, prolly cause it was true. it was 330 by then and i told them i was leaving and to please make sure she got a dose of morphine at 4pm and that the drug book was changed to reflect the proper dose of morphine my mom was supposed to get. they said they would do that.

i went home and called the hospice nurse and notified her of their error. she said she'd call them and make sure they knew the doctor's orders were correct. she said she had seen my mom the day before and my mom was comfortable and not agitated. so i think it was just one day that the meds were screwed up. i went to the nh later that day, at 7pm, just to make sure my mom was comfortable because she would be if she had gotten her morphine at 4 and 6pm. so, my mom looked comfortable. she was sleeping and that was fine.

i was thinking of who advocates for patients that don't have a loved one checking in on them or don't have someone who knows something about medicine and can be assertive enough to question staff members about the care their loved ones are receiving? medication errors are among the most common errors in patient care settings.

this just pixxes me off. i go on.

thank you for sharing and caring and supporting me during the rough part of this journey ,
jeannie