What's Happening in our Caregiving World?

[mrsjerome]

I saw mr j yesterday. One of my sons drove me there. As usual he was in bed sleeping. Everytime I come there now that is where he is.

My son can usually joke around and make him laugh. Not yesterday. Mr j seemed to be staring off into space and day dreaming more than usual. I think he heard us talking to him but only really responded when kind of nudging him. He said he hears us but like his mind is somewhere else.

Also he has this rash that seems to never go away. I know they have tried several different creams on it with no success. I have a hunch it is from one or more of the meds he is on. I really want him off of it but I just bet cause he gives them no trouble this is exactly what they want.

I am going to try and get in touch with that nurse practioner that oversees his case but am waiting till my other son gets back from a vacation he and his family are on.

I let go his supplement insurance and put him on this NH insurance in Jan. cause the supplement was costing so much and this other insurance wasn’t. I think I am regretting doing that. I no longer have the choices I had before.

It just breaks my heart to see him this way.

Jeanne my sil also has alzheimers and lately she has had a few episodes when her blood pressure will go down and she passes out. Upon coming too she is very confused for a while. I am just wondering if she could be having mini stokes. The NH she is in for some reason is not doing any testing for it.
Her son tells us that there are times she doesn’t remember his name but will always refer to him as “her son”.

My other sil exactly one year younger went to visit her. At that time her sister didn’t recognize her but when she told her what her name was then was told “I have a sister by that name” and here they were right next to each other. She could remember a name but not the face.

Take Care

mrs j.

[Buttons2]

Mrs J. could your DH be allergic to latex? just a thought. I'd also ask the PA about his meds. he doesn't need a rash to get worse. it must be heartbreaking to visit him. I hope you are finding ways to enjoy life these days. celebrate spring somehow.

glad you are posting here. we all care. (((hugs))) Pati

[tic chick]

hey everyone ,

i had a really unhappy visit with my mom last thursday.

she was laying in bed when i got there at 1:30 in the afternoon. i thought maybe she had already gotten her pill because she seemed so drowsy and out of it. she was laying there and talking very slowly, with pauses between each of her words. she was saying stuff about her mother being a man and she kept using the words "a man" in every sentence. i think she might have been talking about my father and how my grandma didn't like him. my mom doesn't seem to have any happy memories left and she didn't have too many to begin with.

i just feel so sad for her. she lays there and thinks about things that are unhappy for her. then the nurse came in about 2:15 and gave my mom a pill. i asked the nurse if that was my mom's xanax and the nurse said it was. i said i was surprised because it seemed to me like she had already taken it before i got there and the nurse said she hadn't. she said my mom had been in bed all day. so, my mom kept talking and moving her head from side to side continuously until she fell asleep.

i was really bummed. i had a date that afternoon and i just had to shake off this bad feeling. there is nothing i can do about my mom. there is nothing i can do about my mom. i was coming home late at night and this song was playing on the radio. it's the eagle's "hotel california". there is a line in that song that is so creepy and it reminds me of my mom whenever i hear it. it says, "you can check out any time time you like but you can never leave". it's like a reminder that my mom is in some kind of screwed-up world where she can only escape from through sleep, but when she wakes up, she's back in this screwed-up world of alzheimer's. i had this bad thought that if i wouldn't get caught, i would kill my mom. like smother her with a pillow. now i know that is wrong and of course i would never kill her (to all of you who are now alarmed ). i don't know if it's because i can't stand to see her this way or because i don't want her to have any more unhappiness in her life. my heart just breaks to see her this way and there's not a dam thing i can do for her. not a dam thing. i just wish she would die. i'm sorry if this offends anyone. i just don't see the point in her living anymore with all these unhappy memories. i know the further she goes back in her life, the more unhappy it will also be, because she didn't have a happy childhood, either.

it all just sucks. really.

i have to be honest and write my real feelings, otherwise i'm giving you all nothing. this disease is really terrible. i cannot sugar coat it...i just have to accept my feelings about my mom and her quality of life and work through this, but it's so hard some weeks.

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

[Buttons2]

Jeannie, nothing I can say. just know I care & I also thank you once again for sharing your story. nothing you write will shock me. one day she will be at peace.

does she get to listen to music? I recently read about music helping-just a thought.

((((hugs)))) Pati

[tic chick]

hey everyone !

pati, i was going to get her a radio, but i couldn't seem to find a simple cheap one. now i know where to go and get one and i will.

i went to see my mom today and she had already gotten her anti-anxiety med, so she was pretty much asleep. i asked one of my favorite aides how my mom had been doing the past few weeks. she said my mom had been pretty quiet and well-behaved the last few weeks during the day shift. she didn't know how she was doing during the evenings, when a lot of patients seem to get more agitated.

she has a scab by her nose in the corner. she keeps scratching it and it never heals.

she just looked so helpless and child-like laying there. i rubber her head and hair, cause even in her sleep she still had those "frowny furrows" between her eyes on her forehead. no peace even in sleep...

there is nothing i can do. there is nothing i can do.

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

[joy]

Jeannie your thoughs do not alarm me at all. In fact when I would look at my helpless aunt lying in bed mute for years and years, I often had the same thought as you. I quickly forgave myself tho as it was awful, just being, not even existing but just there and no peace to be found. How it hurt to listen to her TRY and be heard. She'd mumble and I oh so wanted to understand but it was impossible.
the truth is there is nothing that can be done by us but our minds still seek answers or something to try and do. It was so much better for me once I got to share my feelings here with others, strangers at first but not for long way back when.
.

[tic chick]

hey everyone !

joy, i thanked you for your post because you got it...that even though we can't do anything, our minds still seek answers, even the wrong answers like killing our loved one's. i just keep saying to myself, "there is nothing i can do. there is nothing i can do."

so, i didn't see my mom for 3 weeks. i had to fill out her yearly forms so that she can continue to get medicaid and i was working in the yard and then i went to canada. i really didn't think of my mom much. one of my mom's cousin's there is also in the early stages of dementia. she is the same age as my mother, but because she took care of herself she didn't get the disease until later in life. i do believe that even if you inherit a gene to get alzheimer's or you get it because of old age, you can avoid getting the disease earlier by generally exercising, eating right and keeping your mind busy with many different activities. the more pathways you have to different areas of your brain, like the language area, the music area, the math area, the balanace area...the longer your memory will remain good, because even if plaques develop, your brain finds a new path that is still good to use.

when i walked into my mom's room on friday, she was laying in bed, semi-asleep. she opened her eyes right away and i said, "hi" to her, but she didn't seem to know who i was. she had scratched that darn scab completely off the side of her nose and her face and hand were covered with blood. the aide came in and she cleaned her up. she asked if i wanted a glove put on my mom's hand, i said i didn't know if that would help if my mom took it off. i told the nurse at the desk to please put some antibacterial ointment on it a couple times a day cause i'm afraid it will get infected. then i think they can put an anti-itch cream on it so she doesn't scratch it.

my mom was talking really quietly and she didn't even recognize my ex-husband or say his name. this is the second time in a row that she didn't call him by name. she asked me about my sister, calling her by name, so i know that even though she might not know who i am exactly, she knows i am part of her family or whatever concept she has of a family now. i fed her and something strange happened...twice. after she swallowed her food, she jerked up and got a painful look on her face. i told the nurse about it and she said she would give my mom a pain pill. i said, i don't know what's causing this and it's the first time i have seen her do it and i would like the doctor to take a look at her throat. so i'll see if this nurse followed up.

i talked to the man who visits his wife who is in the next bed. i told him he was my second pair of eyes and ears when i was not there, cause he is there every single day. i asked him how my mom had been doing the last few weeks and if he noticed she was laying in bed more. he said the aides were getting her out of bed pretty regularly and she was still paddling herself down the hall and he had seen her be aggressive to other patients. i think he probably meant that she was aggressive with her words or tone of voice because he would have said if she had hit anyone.

so, i stayed an hour with her. she ate and didn't say much, although she managed to get in a complaint about this woman who gets lost and sometimes comes into her room in her wheelchair. the woman had wheeled herself in and got stuck in the door and i asked my ex to help her get out. so he did and she blew us a kiss and left. she was one of my mom's roommate's a while back, one of the ones that talked back to her and that my mom would get in shouting matches with...lol.

so, i have been reading the 70 some pages of archives from this forum the last several days. i wanted to see what i had written, what you all had written. i wanted to know how far my mom has progressed, if i've gotten less anxious about her condition, made any kind of peace with it...etc. the first thing that came into my mind was how incredibly supportive we have been with each other . we have treated each other with kindness and respect and formed a bond here. i have seen that as we talk about our feelings, our fears become easier to bear and we become clearer on our feelings and about life in general. i have seen how some of our journey's with our loved one's have physically ended and i specifically think of julia's loss of her mil, mary and my loss of my mil mary, also...although i never really wrote much about her. i remember joy's sadness at the loss of her mother and i think maybe her coming to peace about that over the years.

i kept focusing on my mother's rapid decline in memory and taking that as a sign that she would die soon. i now believe she will hold out as long as her body holds out. i don't think you die specifically from the dementia, you die from all the complications it causes in your body. the inactivity that makes heart disease worse, the balance problems that bring falls, the inability to eat that brings weakness, all the problems associated with not moving for long periods of time.

i cannot do anything for my mother except what i am doing. there is no point in being unhappy when i can't see her, because she doesn't know anyway...only i know and i know i do still have my own life to live. i think i have come to an acceptance of this disease and the awfulness of it. i said i would stop seeing my mom so often when she didn't remember very much and i see i am taking that path.

i know she will never magically become the mother i wanted her to be in the first place...that hope is gone. what has replaced it is the vision for the rest of MY life. a vision of knowing what i want, what i will not accept, what i will not lower my standards for. i eat way healthier than my mom. i move way more than my mom. i have a way more positive attitude than my mom. i love more than my mom. i am not my mom, although i have been formed by what she was and the environment i grew up in...and i am at peace with that.

to all you still giving us encouragement on our ongoing journey's with our loved ones even though your's have ended, i bless you.

to all of you still on the journey with your loved one and their illness, i wish you peace.

thank you for sharing and caring and walking with me these last 4 years. i love you all .

jeannie

[Jo6]

((((Jeannie)))) dear one, I have missed being here, but hope to be here more often soon.

I will be forever grateful for all the love and support all of you have given me over the years. Not once did any of you forsake me, no matter how much I grumbled and complained.

I also feel that bond that I will carry me to the end of my life. Sisters and a few brothers, in time of sharing and carrying you all were right here to hold me up when my feet could not go another step.

Jeannie, I admire you for the courage and steadfastness you have shone. I know you cared for your dear MIL, Mary. You were right there for her, always. Doing the things that nobody else wanted the burden to carry around. Extra goldstars in that halo one day!

When it came time for your Mom to be placed you had your plan mapped out, followed it and carried the burden all alone. I must say you have done what you had to do, no matter how hard it got. Yes, that is one hard thing to do too. When the siblings wouldn't do anything I stood by Ken and hope I was a help to him.

The burden you are carring right know as to whether to give different treatments weighs very heavy on the heart. I see you struggle through it, making the best decisions as best you can. My opinion is you have made the right decisions concerning your mom's meds. and treatments.

Right now your Mom seems to be withdrawing within herself. We don't know what goes on in the brain, but some times you can see certain looks, a shiver, look angry, maybe a smile now and again. Her struggling for words, but can't get them out or if she does it's hard to understand her. I look back and I see how I felt so frustrated about it I myself had to withdraw some of my feelings.

I know it's hard for you, but I think you have made a lot of progress the the past few months. Yes, you need to get on with your own life. That doesn't mean you stop loving Mom. Actually it may even bring her some comfort. I may be wrong, but I felt Mary sort of fed on our feelings to some extent.

You are lucky to have the second pair of eyes and ears with your Moms roomate. You can learn more in just a short time when you depend on the "help" no 2 will tell you the same thing. You may find this different, but it doesn't hurt to have at least one of the nurses as special in little ways. Sometimes it's a smile, a few cookies or just ask how they are doing.

I'll send you an email when I can sit a little longer. I hate the way I'm falling apart!! I was very glad to see your post, glad your visit to Canada was a good trip and glad to have you back safe.

I read in another forum where Jan is having a hard time with Hank. I think of Mrs. J. too. She has her struggles and Mrs. Q, She is about to do herself in. I would hate to see her end up in the hospital. It's no fun and I have preached and preached about Caregiver being good to themselves and I guess I didn't listen to myself.

I love all you loving caregivers as well as your patient's. Take care of your self FIRST!!

Jeannie, you are one strong woman, but a very loving one. Take care and we'll talk later.

Love to all that comes thru here. Julia

[tic chick]

hey everyone !

i went to see my mom today because last week was just so busy. i talked to my brother about my mom a few days ago and he told me that her roommate went to another room. i knew right away that something had happened and my mom must have done something to the lady in the bed next to her. i have talked to her husband every time i have gone there and i told him about my mom getting aggressive with some people. i told him if her ever felt that his wife was not safe in the room with my mother then i would not blame him for moving her to another room.

so, i saw my mom and she was asleep. last tuesday, a nurse at the home called me at 7AM to tell me my mom had a big bruise on her arm, but it didn't seem like she had fallen. i wish they would hold those unimportant calls until 9AM. i'm going to suggest that at the next care conference. so i tried to look for this bruise on my mother's arm. an aide came in and i asked her if she knew where it was and she showed me. well! this bruise was about 5 inches across and up and down and it was almost a perfect circle. it was black and purple, as if she had just gotten it. i have seen bruises from a person being hit and from them being mishandled, but this bruise didn't have different colors, it was all dark and ugly and round, not hand shaped. of course, my mom is older and she's on blood thinners so the nurse said she bruises easily. i asked her to ask the doctor if maybe a capillary had burst there and bled a lot cause of the blood thinners and she said she would. she also said my mom had another urinary tract infection.

then i went to the room where my mom's previous roommate had gone to. i saw her name and i saw her husband in the room when i was walking down the hall. so i walked in and i said hi to T. i asked what my mother did that caused him to move his wife. he said last sunday she was getting out of bed and was having trouble, so he helped her. then she paddled in her wheelchair up to his wife and started pulling on her leg. he stopped her, of course, but that was his reason for moving his wife...plus the fact that a few weeks ago, he found her sitting on the mat that he puts by his wife. it was kind of a barrier he put there for her because my mom can't go over it with her wheelchair. he thinks maybe she got out of bed on that side and wanted to go his wife, because her wheelchair is on the other side of the bed. i knew that had bothered him when i talked to him about it, but he didn't say much more at that time. he told me today that he really regrets leaving my mom there because he has grown to care about her and her struggle with alzheimer's and he is such a nice guy. he told me to visit him when i came with my ex and i said of course i would. even among all this, he was still able to make a joke about things and he made me laugh. i really like T as a person and i can't blame him for thinking of his wife's safety first.

so, my mother's journey continues. i can't help but think that she would hate to know what kind of life she was living if i could tell her and she could understand. the nh put some kind of alarm on her.

i can't do anything about this. i can't do anything about this.

and that statement is the only thing that keeps me from getting seriously depressed about this situation...kind of like the good and bad of that statement.

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

[Jo6]

Jeannie, I am so very sorry about your Mom. I would insist on knowing how she got that bruise. It could have been the blood thinner, but not knowing for sure I would try to get to the bottom of things.

I know you hate to lose her roommate and the husband. I know how I worried for Mary's roomate when MIL becan to show voilence. Her roomate couldn't move and didn't seem to hear or talk.

There was no rhyme nor reason as to when and where Mary would get "out of sorts." I'm not saying your Mom is like that. Since she has problems getting in and out of bed at times they should make sure to go to her when they see she is moving. It's so hard on you because you do want to fix it and can't. I guess that is the worset thing of all. Our wanting to and can do are poles apart.

I think of you and all of the caregivers everyday. It is not an easy road to travel. I look back over the years and think about both my parents and Kes dad. They all died a year or less from the time we knew they were sick. With Mary it was at least 14 years and that is a very long time to be a caregiver.

I know you would not have it any other way, but don't forget to take care of Jeannie. Like you said, I can't do anything about it, I can't do anything about it.
Just be careful and take care of Jeannie!!

my love and prayers are with you all, Julia

[tic chick]

hey everyone !

well, i had another "go round" with the nh today.

yesterday i got a call at 5pm from a nurse at the nursing home saying they wanted to put my mom on seroquel because she was screaming in her room. once again i said no and told her there should be a paper in her chart stating my orders that my mom not be prescribed any antipsychotics, atypical antipsychotics or ritalin. i asked her why they weren't giving her the ativan around the clock (the doctor had switched her to ativan from xanax about 2 weeks ago). she said he discontinued her ativan AND her effexor! i said, he's an idiot. i also said i wasn't my giving permission to start her on seroquel. so today i went to the nh and talked to the director of nursing, again to straighten this out.

my mom was in the hospital from june 10-12 for a severe urinary tract infection. when i was in the er with her for 7 hours, i heard the doctor say that the nh was giving her an antibiotic that her infection was resistant to and they knew that because they ordered a test that told them what antibiotics were no longer working for her urinary tract infections. i had called the director of nursing the day my mom got sent back to the nursing home from the hospital and asked her why the doctor had given her an antibiotic that she was resistant to? she didn't return my phone call, so this was also one of the questions i wanted to have cleared.

so, i saw the director of nursing today and we had an hour long meeting. i told her about the previous incident where they had given my mother an antipsychotic (risperdone) without getting my permission and that there was supposed to be that paper saying that i don't want her getting those drugs right at the front of her chart. i asked her why the doctor had changed her medication from xanax to ativan and once again he wrote the prescription as "prn", which means when needed instead of writing it like the xanax was, which was 3 times a day everyday. i said that i preferred the drug ativan, but if they knew she was having these temper outbursts and being aggressive, why didn't the doctor write the ativan for 3 times a day like the xanax was? he changed her to this ativan the day she came back from the hospital to the nh. then i asked her why did he discontinue her ativan and her effexor (which she has taken for 30 years) BEFORE he got my permission to give her the seroquel? i said these are meds you have to be weaned off. well, she didn't have any answers for me and she said she was going to look into that matter and the antibiotic matter for me, also. she called another doctor and she got my mother back on the ativan, 3 times a day and got her back on the effexor. i signed the papers giving my permission for that right in her office and it was done! then i told her i didn't want dr.w. to see or write prescriptions for my mom anymore (this is why power-of-attorney papers are so important). i asked her who else came to the nursing home and she named 3 other "doctors groups" that the nh used. i asked some questions about each "doctors group" and then i chose one. so, i hope this new doctors group is more communicative with patient's families.

i have been so stressed the past 2 weeks with my mom and i also told my ex husband he had to move out of my house. my ex left last friday and i was upset last thursday thru sunday. i'm doing better today, otherwise i wouldn't have been able to handle my mom's stuff today. it's a big change and another loss for me of hopes and dreams. i'm going to be okay, though...cause i can't do a damn thing about either situation, i can't do a damn thing about either situation. my personal philosophy of taking one day at a time and finding and experiencing the good in every day that i am alive is what keeps me going. i'm an optimist and i can grieve when i need to and then move on...one day at a time.

jo, i miss ya so much ! i hope we get y'all back here...joy, pati, karen, mrsjerome and jan and the other kind people who dropped in, also. i know i am posting less about my mom, because she doesn't know who i am anymore, so i do not see the point of seeing her every week, although i will go every other week just to keep tabs on my mom and let the nursing staff know i'm still there and i still got my mother's back until the day she dies.

thank you all for sharing and caring ,
jeannie

i wrote this post in the multiple sclerosis forum, because there was a discussion going on about end-of-life issues. unfortunately, the thread was closed, but i wanted you to read this, because we have all discussed this before and with respect for everyone's opinion. here is the post:

hey everyone !

this is a video interview with the person who wrote the article in time magazine. the article was called "how to die" and was written by joe klein, who is a writer for time magazine. the story in time magazine describes his experience during the last days of his mother's and father's lives. here are his own words about what he wanted to convey in his story, not what someone else with their own agenda wanted you to believe.

Only registered and activated users can see links., Click Here To Register...

i don't post in this forum and for those of you who might not want to read this, i'm going to post my experiences with end of life decisions.

i had read abby's post and listened to half of the video she posted. i was angry at what this person who writes for the internet based website, "natural news" as the "health ranger" was saying. he was referring to "death panels", pulling feeding tubes out of your parent's and letting your parent's die because you want to act in a "socially responsible" manner. however, i saw abby had deleted her post and i had chalked off this "health ranger" as being an opinionated commentator who had a national venue for his views to be read and heard. i had let my anger go and was going about my day yesterday until i got a phone call at 2:30pm.

i have written in the alzheimer's forum here about my struggle with being the power of medical attorney for my mother, who has been in a nursing home with a diagnosis of severe alzheimer's dementia. she has been there for 4+ years. i have also written about my grief of losing her to dementia and my grief of the loss of hope i had of her ever being the mother i wanted her to be to me, for we had a reversed relationship, but i had already forgiven her for that a long time ago.

because i am the power of attorney for my mother, everytime the phone rings and the caller id shows the name of the nursing home where my mother resides, my heart skips a beat. i let the phone ring one more time to give me one last moment of peace and to calm myself in case there is bad news. usually it is something minor; my mother was found on the floor although it doesn't appear that she had fallen, my mother has a urinary tract infection and they're starting her on antibiotics, my mother has a bruise that they just noticed. they call any time during the day or night, because they must tell me these things in accordance with the laws of michigan, where i live. because i am the power of attorney for my mother, i have the power of deciding whether they can give her any medication. i can specify what doctors i want or do not want her to see. i can discharge her from the hospital doing it "against medical advice" and i could take her out of the nursing home and put her anywhere else i wanted to.

i am my mother's "life panel".

so yesterday when the phone rang and i saw it was the nursing home, i let it ring one more time and i answered it. the nurse at the nh told me my mother was lethargic, was not eating or drinking and didn't want to get out of bed. she told me they were going to send her to the hospital, but that the ambulance wouldn't get there for another 45 minutes. i immediately asked my son to take me to the nursing home. i do not drive. i wanted to see my mother and judge for myself how bad she was, because i knew once i gave consent for my mom to go to the emergency room of the hospital, that i was giving consent for the the hospital to treat my mother and i knew they must treat her. i knew my mother was being treated for a urinary tract infection for the past week. i also knew she had a large polyp in her colon that was found last year during a colonoscopy for a low hemoglobin level. i do not know whether this polyp is cancerous, because they couldn't take a biopsy while doing the colonoscopy because the doctors neglected to take her off her blood thinners prior to knowing they were going to do the colonoscopy. i also knew my mother had congestive heart failure, heart arrhythmia and had 2 stents in her arteries. i made the decision not to have the polyp removed because it was very large, my mother would need a colostomy and her recovery would be slow. more importantly, she also could die during surgery because of her heart problems or die afterwards from the complications of surgery or recovery, from pneumonia, infection or both. i was not going to put her through chemotherapy or radiation therapy afterwards either, so there was no point in starting the process. my mother was in a state of decline at that time and she was forgetting who we all were (her family). at that time, i also signed a "do not resuscitate" order on my mom.

i talked to my mother while she was still able to make decisions about her end of life wishes. my mother's mother had died from complications of surgery for colon cancer also and my mother specifically wanted to avoid that because she felt responsible for her mother's suffering and death because she and her siblings had agreed to the surgery. i knew my mother was having memory problems and i had a feeling it was dementia and i wanted to know her wishes before she could no longer tell them to anyone.

so yesterday they did blood work and a few other tests and she had a bad urinary tract infection because the nh doctor put her on antibiotics that weren't killing the particular bacteria that was causing her infection, a drug the nursing home had found she was already resistant to. i could have chosen not to have her treated and let the infection spread to her bloodstream and cause her death. but i didn't, because her kidneys were still functioning well, her heart failure was under control and i knew my brother and sister would not want me to withhold treatment. my mom doesn't know who her family is, she is getting to be an aggressive/agitated patient, she can no longer put together a coherent sentence and she constantly has an unhappy look on her face because all her memories are so unhappy. however, she still sometimes responds to me with a smile when i walk into her room, she can still move herself around the nh in her wheelchair, she can still follow simple requests and even laugh once in a while and she still has an appetie and feeds herself. i let her be treated for the infection.

my mother-in-law died last year in march. she was 93 and had been in assisted living and nursing home care for 14 years with alzheimer's dementia. she had no medical problems other than the dementia. she hadn't known her family (my husband and children), for the 8 years previous to her death. the christmas before she died, she was in the hospital for pneumonia. they cured her and she went back to the nursing home, but she never really regained her strength. she lost her appetite, started staying in bed and in march she developed pneumonia in both her lungs and a urinary tract infection. her primary care doctor said her condition was very serious. i talked to my husband and said, "i think it's time to let your mom go. she is in the process of dying. if they cure her of this and she goes back to the nh, she will just get worse because she is in decline and she will only suffer longer from now on." he talked to his mom's doctor and decided to put her in hospice.

hospice means you recognize that your loved one has a diagnosis of a terminal disease, but now the suffering from the disease and the treatment of that disease has drastically lessened your loved one's quality of life and you are ready to stop any life prolonging treatments and let your loved one have a peaceful death. some terminally ill patients are able to decide that they want to go into hospice care.

once a patient is in hospice, the hospital and family doctor are not in charge of the patient's treatment, the hospice team is. they are wonderful, dedicated, spiritual people who are usually nurse practitioners. they wrote orders for narcotics and drugs for break-through agitation for my mil. they monitored my mil and gave the orders to the hospital staff to follow. there were no more tests done on my mil; no xrays, no blood draws, nothing. a morphine drip iv was put in my mother's arm and that was the last thing that poked her. any symptoms that developed were dealt with drugs put into the iv. of course no food or water is given, because it causes more suffering (mucus build-up, coughing, difficulty breathing) during the dying process. we saw how peaceful and easy her breathing was during this time. the hospice called us when they knew her death was imminent and we saw her for the last time. she died 7 days after being put in hospice.

i have written my story here because death is a personal and family matter, not a political one. i believe every person should think about end-of-life decisions, because if you do not make your wishes known, then someone will decide for you what is to be and that might not be what you want. you don't have to choose a family member as power of attorney for medical matters for your end of life decision's, it could be a friend, your doctor, a priest or anyone you trust and who will take the responsibility for your last wishes to be followed.

all other things being the same as they are today...
would i let my mom get a heart transplant? no.
would i let my mom be treated for any kind of curable infection? yes.
would i treat my mom for a curable infection if she was in a vegetative state? no.
would i ever put her on a feeding tube? no.
any other scenario? i make the best decision at the time, even to stop treatment.

these are all scenarios and decisions that can be put in an end of life treatment plan. the more specific your choices are, the better your choices will be followed.

the hardest part of being the life panel for a loved one are your emotional feelings about that person. of course, we never want our loved ones to die. i hope my mother dies naturally and peacefully.

but if for some reason i need to make the decision that will result in my mother's death, i pray it is the best way possible to end her suffering; for i not only care about her quality of life, but also the quality of her death.

thank you for sharing and caring,
jeannie

this is a link to the original story that was printed in time magazine: Only registered and activated users can see links., Click Here To Register...

[Buttons2]

[B]Jeannie,thanks for posting an update on your mom. and your post on the magazine article was informative.

it's been one year tomorrow since my housemate & his sons made the decision to take daughter/sister off life support.we don't discuss it much. I never doubted it would happen. this was all going through my mind when I was replying on the MS thread. as I wrote-we all have our own personal reasons for our feelings.

well,didn't mean to go OT,but it's not always an older person dying. and when there's no directive-someone is left to make the hard decision!

my neighbor was just diagnosed with Alz. he's in his 80's. I sure feel for his wife as she isn't in good health herself. housemate & I have had some discussions recently about HIS state of mind. VERY difficult to communicate with him. I did let him know his personality has changed alot in the past couple of years & that concerns me more than his memory loss most days. he does recognize his memory loss but I think I really threw him off when I said he used to be such a nice guy & now he has road rage & is mean & nasty @ times.

well he did ask! I live it 24/7 & it's taking a toll on me of course. and I didn't say one thing that isn't true,maybe it will sink in & maybe not but I finally got it off my chest.

this is OT also: someone is doing an expensive study about schizophrenic's & aging. seems they age faster than normal people do. well I could have told them that! my housemate acts like he's in his 90's. he just turned 74 yesterday. of course this study will be for a new med. most likely. he hasn't taken any anti-psychotic's in years & I hope he never does again!

my mom's dementia is getting worse of course. and my dad still won't talk about any issues.

life goes on eh?

and I concur with you Jeannie,there is nothing I can do,there is nothing I can do.

bless all the caregiver's out there. and take care of yourself! that cannot be stressed too much.

(((hugs to all))) Pati

[tic chick]

pati ,

most people notice the personality changes in people who have early alzheimer's more than the memory problems, at first. the memory problems aren't that bad in the beginning and can be attributed to old age or simple forgetfullness. however, the personality changes are more pronounced and visible and sometimes scary or disturbing. my mom was very paranoid when she lived in her apartment and also the stories she started telling about her doctor's being in love with her and wanting to marry her were completely not her and unbelievable.

i wanted to mention that when i was in canada, my mother's cousin told me that when my mother called another one of her cousins in canada once, she biatched about me "ruining her life" because i said she couldn't marry her doctor. that kind of teed me off and made me sad, because it was a delusion of her's and i was just trying to talk to her and say how could this be possible when.... i wanted to be able for her to see the impossibility of her marrying her doctor by trying to explain reality to her. unfortunately, she was already too far gone to be able to reason with.

this damn disease.

thank you for caring and sharing,
jeannie

[Buttons2]

yeah I agree. I've now forgiven the neighbor for his bizarre behavior in the past few years! wonder if my mother will turn into a sweet old lady sometime soon? not likely! I warned Dad several years ago that she could actually become dangerous. doubt he believed me.

when I bought part of an estate years ago where the woman got Alz. & the DH had put many knives & scissors in down pillows & sewn them shut........I was appalled! didn't know much about any dementia's back then. knowledge is power (well to some extent anyways-everybody is different afterall).

your mother & the doctor reminds me of Mom thinking Dad had married another woman. grateful I'm not around for everything going on over there. and it will only get worse......

[mrsQ]

Hi ladies,
We are still just going along about the same. Skip doesn't know us but seem content most days. I live on a 3 hour time frame 24/7 to keep up with her needing to be turned. I am getting her up more but still only for 3hours at a time because her skin is like tissue paper & the last thing I want is to see her with skin breakdown.
The lady that comes in MWF from 8-3 is great I can relax and get out or SLEEP. The thing is the company she is working for is just not run right so I don't think she is going to stay with them & with this wavier program we can't just switch providers I don't think. I know we can't say well we want her to stay and ofcourse we can't pay her out of pocket.
Skip is eating better since they put her on the meds to help with that. I honestly can see her making it into her 90's I gave up long ago trying to guess God's time line for her. Two of the folks that told us years ago that she only had weeks to live passed away themselves. I do worry every time I flip the light on at night to make sure she is breathing.
It makes for a stressful life for us and does not help a marriage at all but seems to be the best solution for now. It is easier to have her here than be trying to run the roads to make sure she is beign cared for. Our foster son is wanting to bring his family down for a visit but there is no way I can handle company at least not staying in the house. And honestly my depression is so bad right now having to be around a little kid would just be more than I could handle. Avoiding kids is not the most logical way to deal with infertility issues but it is what works for me. I know I come across as not liking kids but it hurts less.

We just take it day by day & I just pray I never have anyone else in my family have this I can't handle it again. Part of me knows this is not good for me to be doing, but I do not know how to live with myself if we put her in a home where she is like in a coma at least here she responds to pets and smiles sometimes.
(((hugs )))
Karen