What's Happening in our Caregiving World?

[tic chick]

hey everyone ,

i didn't write about last month's visit with my mom. she was in bed, kind of out of it because she was on pills for a urinary tract infection. i fed her some grapes and saw she hadn't eaten much of her breakfast, so i fed her lunch when it came. it was pretty much a usual visit.

i went to the nh yesterday for another visit. my mom was in the dining room eating her lunch. i came in there and i said "hi!" no recognition from mom. i said, "you're my mom." she said, "i am"? i said, "yes and that's why i love you." so that brought a smile to her face. she started yelling at this man all of a sudden. i noticed that he had an unnatural stare (not under his control) and since my mom was directly across from him at the table, she was the object of his stare. my mother was really upset about his stare, she yelled, "get your eye away from me." since my mom was done eating lunch, i wheeled her out of the lunchroom, but i told the aide there not to put them directly across from each other. i hope she remembers.

so we were in my mom's room and i helped her into her bed because she looked tired. she was holding onto my arm and i was giving her kisses on her cheek. she said i was so nice to her. then she started talking to me in polish, telling me her stomach hurt, so i was trying to get some information if it hurt all the time and every day and how much it hurt, a little or a lot. so i got some answers and i didn't think it was serious at this point. i will ask her again after the next time i see her at lunchtime if her tummy hurts.

so, my mom is like a big baby. she responds to love, the most basic of all emotions. she got so relaxed when i was kissing her and she was holding me. so that is the most i can give her now, is love. i am still reconciling the fact that i am once again taking care of her and not getting anything back, but this time it is appropriate. now she cannot give back. she cannot give me anything. i have to give it to myself or get it for myself. this is perhaps the hardest lesson i have had to learn in my life...sometimes you have to give love and expect nothing in return but the peace you find in giving that love.

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

[joy]

i am glad to hear how she is doing. hubby sister-in-law is in 80's and has dementia. i have started trying to drive and managed to hurt arm lowes box fell on. i wanted so bad to drive so i could be of some help to them. 1 dsaughter that took hubby place where he worked and she has already used up all her time off and vacation, the boys live away. his broter has heart problems also but noyt same as hubby.

before we married i thought when he had heart trouble and so ectensively that he would not live long. but praaise God he has. and with them being so much older than i am, i know how tiring that has to be, well really i am wondering just how theydo it.

[tic chick]

hey everyone !

i visited my mom for a couple hours last wednesday. the nurse said that they are checking her for a urinary tract infection...again. i am so tired of my mom and i'm sure other people living with alzheimer's disease getting multiple urinary tract infections every year. this is a matter of making sure a patient is changed when they have soiled their diapers. i see all these suits in the hallways talking about the physical aspects of the building...what about the care of the residents?

my mom seemed to be a bit more aware last thursday. she once again commented that my hair was not supposed to be red . she asked about several of her childhood friends and i knew some of their names because she had talked about them a long time ago. i told her they were all okay. she asked about her mom and dad and i told her they were okay and that they had moved. i mentioned the first street my mom's family had lived, then the second and third streets just to see if they would spark a memory. i wasn't asking her questions, just having a conversation. nothing sparked a memory .

my mom asked me, "how is your sweetie?" well, i am sure she meant my ex, but i answered, "which one, i have so many?" yes, it was flippant and i just should have said he was fine, but it still hurts at times. yeah, surprise...i am not always perfect .

i was laying my head by my mom's shoulder. i can't put my hand on her shoulder or her arm or across her because she says it hurts. sometimes i just want to climb into the bed with her, but there is not enough room for the both of us in a twin bed. she was kissing my forehead when i had my head by her. i wrote in a previous post that people with dementia can still accept the basic gift of love, but now i know they still can also GIVE the basic gift of love. this is very hard for me to wrap my head around at times, for my mom never just gave me a kiss when i was having probs as a child or an adult. it would have meant so much back then, instead of the constant confrontations over things i was doing in my life and her constant need to ask for advice about her life. now i get the pure love. does it matter that she might not know who she is kissing? no. because i know that she is still my mom, but now she has dementia.

so, i walk peacefully through this part of our journey now. thank you God.

thank you all for sharing and caring ,
jeannie

i just remembered that my mom also said to me, "you're beautiful", when she was looking at me. once again, it doesn't matter that maybe she doesn't know quite who i am, for i know she is seeing ME and that is her thought.

[tic chick]

hey everyone !

i went to one of the nursing home's "care conferences" for my mom last thursday. i haven't gone to a couple of them because i keep up on my mom's probs all the time. i feel sorry for people who go to these conferences and don't know the right questions to ask. the nurse and social worker and dietary and activities reprentatives sit there with your loved one's chart and you're supposed to tell them about your concerns. these representatives should at least give you a basic status of your loved one's health, then at least you could ask question's based on those facts.

anyway, i saw my mom before the conference and she was awake after lunch. there weren't any nurses aides around that i could see. the head nurse was at the station trying to move patients in wheelchairs. they had congregated there and blocked off the hallway. i was getting my mom some fresh water, something she usually has. i don't know if they were short of aides that day because of vacations or some other reason, but i didn't like that. i told the people at the care conference my mother was upstairs and it was obvious to me she needed changing and there were no aides up there. they asked me if i reported it to the head nurse, i told them what she was doing. they said i should tell the head nurse and she would get an aide to change my mom. i asked them what did they usually do when i wasn't there to notice my mom needed changing. i said, "do you change them on a schedule"? well, none of them had any answers.

i asked what my mom's hemoglobin level was because my mom has a polyp in her colon and she has been in the hospital twice for low hemoglobin. they looked at her chart and saw her last blood tests were in january. i told them about her past probs with low iron and potassium in her blood due to the polyp and i suggested they check that every 6 months, at least, so they would know before my mom's levels got too low. the nurse said they usually do check every 6 months and she wrote an order right there for some bloodwork for my mom.

i also asked them to please review with their aides how they get a patient to sit up in bed so they can get dressed or whatever, because i think they were just pulling my mom up by her arms and with her bad shoulder it was very painful for her. a couple months ago i noticed little round bruises on my mom's arms and i didn't think much about the little bruises then because my mom bruises so easily, but i kept going back to them in my mind over a few weeks. then my brain kicked in and i realized they looked like a finger tip pattern of a hand. i also told the nurse at the care conference that my mom was getting a urinary tract infection about every 3 months and that's unacceptable to me. her infections are already resistant to a few antibiotics and i told them i didn't want my mom to get really sick and have her be resistant to a lot of antibiotics.

i really dislike that nursing home. i think they give up on people like my mom who have severe dementia. i feel helpless and hopeless that things will change for the better in the nursing home and wish i could pop into there at any time and be a squeaky wheel.

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

[Buttons2]

Jeannie, is moving her an option? if possible I'd sure consider it. sounds like they are ignoring her for the most part.maybe some place you could walk to is a possibility? how about your siblings help? might cost more but this place sounds like worse case sceneriio. hope you find a solution. good luck & thanks for sharing. Pati

[tic chick]

hey everyone !

i went to visit my mom last thursday. she was in the lunchroom, waiting for lunch. she was hunched over and she had this frown on her face. she was half asleep. i tried to talk to her, not much response. i put my arm across her back and she didn't want it there. her lunch came and i cut it up for her. i left while she was eating. not a good visit. i'm upset about the frown on her face. i don't know if something was hurting her, she didn't answer when i asked her that question.

pati, i'm pretty sure once a person is in a certain county for medicaid, it's almost impossible to get them to another nursing home in another county. i don't know how i would even go about finding that out. it doesn't really matter how much it costs, they pretty much have everything rigged so the nursing homes are all competitive. right now my sibs could prolly give me zero help. you know they have a rating system for patients? yep. if a patient has certain behaviors that other nursing homes don't want to handle, they can refuse that patient. it sucks. every place wants the perfect dementia patient. quiet when awake, sleeping the rest of the time and dead in a year. i know i might sound jaded, but i've been dealing with this place almost 5 years already and i am just waiting for the day when my mom gets so sick that she will die shortly. then i can bring her here to my home for awhile and let her die in peace.

thank you all who are still walking with me on my journey. i appreciate your replies and your thanks that you have read my posts.

i know i would be in a bad place if all you weren't here .

thank you for sharing and caring,
jeannie

[Jo6]

Oh Jeannie little one, my heart so aches for you. I can agree to all the things you are saying about the Nursing Homes! It is almost impossible to move your LO once they are settled in one NH. Yes, they do compete and always try to get the "perfect Patient". That would be THIER idea of "perfect Patient."

The UTI seems to be the given, yes about every 3 months. Even when Mary couldn't move Ken and I both would change her when we got there and when we left. At least we knew she was dry for that time. Don't know if it helped or not, but I prayed it would help.

When they moved Mary down to wing 2 we knew the next move would be the mortuary. It was all so sad and it takes everything out of you. We talked about bringing her home, but since she couldn't move we knew we could not do that.

If it works out where you can bring your Mom home for a short time and like you said, go in peace I think that would be wonderful.

Please remember we ARE here, walking along with you, thru the sunshine, rain tears and those few happy moments. They may not come often, but when they do hold those close to your heart. When you need a hug, take one out and cherish it.

Although Mary has gone on to her reward I still feel like I belong here. If I can help anybody please know I am here. I came here in 1999 in the spring. I had so much help from so many people. Some I see still here today. I'm hoping to get together with as many as I can. What a happy day that will be for me!

I'm here for each and everyone of you , especially those that helped me when I could no longer stand. Please know I'm here for all of you.

Jeannie, you have helped many by talking about your feelings as you go along. I know it isn't always easy for you, but you keep right on helping others.

It has been truly a blessing to walk along with you and the others. You are one in a million.

all my love, Julia (((((( *Jeannie)))))) Many hugs to alls

[tic chick]

thank you (((julia))) ...

i'm remembering the good day i had with my mom a few months ago and it is comforting.

thank you for sharing and caring,
(((hugs))), jeannie

[tic chick]

hey everyone ,

i have saved messages on my phone from my mother. she left them on voicemail when i wasn't home to answer the phone. i've wanted to write them down or record them off the phone, but i can't get to them as that part of the phone isn't working. i need a new phone, but that's low on my list of priorities...the darn thing still rings.

anyway, i was looking at my internet/television/phone bill. i have at&t u-verse for all three. i was looking through the website, something i don't do because i just pay the bill there. i found the list of calls that i had saved from my mom....and i can replay them! i have about 14 calls, some before she went into the nursing home. i listened to them the other night and cried my eyes out, of course, but it was wonderful to hear my mom call me by my name. i don't know why that's so important to me, but it's the best thing about listening to those calls.

i just wanted to share that.

thank you for sharing and caring,
jeannie

[Buttons2]

first let me say I fell again,face first onto the concrete patio! this was a week ago,broke my new glasses & have 2 black eyes. postponed trip to other part of state to see my mom. no service for my dad. cancelled buying plane ticket to get my sister here so I could have dad's ashes moved to cemetary near where they lived so many years. mom is being unusually weird. Dad died on sis's BD & mom has yet to call her! plus her (mom's) BD was this past Sun & when I called she didn't realize it.

going over & back this Friday & I so dread it! can't sleep good,can't see well & just plain exhausted. been on phone to hospice,sheriff's office,funeral director, cremation person Plus relatives I never talk to! I haven't even cried yet. have told everyone mom has dementia but not sure anyone believes me! she was married to my dad over 64 yrs but was gonna let him be buried in a cardboard box!! is that sane! my dogs ashes were in a box! maybe it will help me to write some of this down? it's just too crazy.

too tired for anymore right now. bye

[Jo6]

Pati dear, we are going to have to stop falling!! Yours sounds like such a bad fall, did you go to DR?

I read your post about your Dad when I first logged on. I remember several times you had mentioned your Dad and was afraid something was wrong, but he would just say he was fine. This had to be such a shock for you.

I'm sorry about your Mom to. From your past post I would think she would need to go to something like Assisted Living or maybe even a NH. I know it isn't pleasant to think about, but there are worse things. Please forgive me if I have over stepped out of line, but I care about YOU and know you have to take care of yourself!

My mail isn't working but you can send me notes on BT, PM. Please let me know if I can be of any help to you.

My prayers will be with you. I love you dear Pati, Jo

[Jo6]

Pati dear, I have had you on my mind constantly. Some of us have been together for a very long time and you all feel like family to me. If one hurts, the rest of us hurts. Sometimes we have good thing's to share, we all are happy.
You have had some very hard times lately and for that I am truly sorry. Please call on us whenever you need us.

Pati, I'm a little confused about the date your Dad died. You could have posted and I may have just missed it. It isn't hard for me to get confused these days. My email hasn't been working lately and I didn't even notice. I think it is back to normal so please feel free to write me.

We all have shared much on this forum and I miss the time here. I'm hoping all will feel free to post more. If it will help you Pati, please post. If you look back you will see I surely have posted a lot and it did seem to help me.

Sometimes just writing it down and knowing we will hear you it could be a lot of help. So, anytime you feel like posting please do. I know it helped me.

My prayers are still with you as with all your family.

All my love, Jo (((( Pati ))))

[tic chick]

pati ,

what julia is saying is right.

we are concerned about you. i'm concerned about your fall so close after the other one that gave you a concussion. what is happening with your housemate? is he okay?

we are a family here. it does help to talk about it. i know things have happened so fast and maybe you haven't had time to process them. please know that we will be here when you want to talk.

(((hugs to pati))),
jeannie

[Buttons2]

my entire post just got deleted. will write later. thanks so much for all the support. I am Ok. please don't worry about me. cannot say I'm normal right now but doing Ok.

[tic chick]

hey everyone !

last thursday wasn't a good day in the nh.

my mom was in the dining room getting ready to eat when i walked in. she always has her head bent when i see her sitting in her wheelchair. it's like her head is too heavy to hold up. she started talking to me and most of what she said was unintelligible. i could only understand the little words, like "me", "eat", things like that. when she didn't remember a noun, she just said something unrecognizable. i cut up her food and she was eating and i fed her a little bit, too. she put her fork in her coffee with some cabbage and mashed potato on it . then i stopped her from pouring her coffee over her lunch plate. how can a person be so out of it and still be able to live? i smiled at her and she smiled back. i wore a scarf that had lots of colors in it and she noticed that. her hair looked really nice because i filled out a form to have it cut. she has such pretty gray hair and it's so full still.

i checked to see if they did the blood work that i asked them to do at the care conference a few months ago. they did it in august, i had forgotten about it then. her iron was lower than normal, but not too bad. her potassium was lower than normal, but also not too bad. i told the nurse to write a note to the doctor reminding him that my mom has a polyp and it is leaching the potassium out of her blood and probably bleeding a little. i don't want her to get to the point where her iron is so low that she needs to get blood. i suggested they do bloodwork on her every 2 months, so hopefully they can do something before it gets too low.

my mom was singing in the dining room after she ate. i couldn't make it out, because she was so quiet. then i wheeled her into her room and she started singing louder... "will i be (something unintelligible), will i be your (something unintelligible)." i tried to recognize the tune, but couldn't. then a couple hours later when i was at home doing something, i realized she had been trying to sing "que sera, sera" by doris day. crap. i would get her a radio, but i know it would be stolen or the aides would come in the room to clean and change her station and my mom wouldn't be able to change it back.

obviously she was having a bad day. i don't know how many more good days she has left. as soon as i'm done raking the leaves for the year, i'm going to get this room ready for her. i hope to be able to bring her home if she's close to dying. i want it to be a spare bedroom, anyway.

i can't do anything about this, i wish i could, but i can't. i am powerless over this stinking disease, as are the doctors.

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