What's Happening in our Caregiving World?

[tic chick]

hey everyone !great to be back here and whining again . hope you all have been okay during this bt downtime.okay. jump in the water's fine!thank you for caring,jeannie

[joy]

Good to "see" you Jeannie. I have started my whining already on the Emotional Support thread. I cannot get my smilies to work inside my thread so far is my next one so I will chose one for the post as I am determined to have a smile somewhere and my face doesn't want to comply..

[mrsQ]

Well isn't this a nice new pretty place, going to take some getting use to though. I see lots of red x , that could be my pc though it has been ''under repair'' and still is not right.
MIL is still the same. With so much going on with Mr.Q I haven't been to the NH is almost a week. I really messed my leg up in that fall at the hospital more than I thought so I have been limping around to all his appoinments so that doesn't leave much for the NH. I have thought about calling and asking if they would bring her down to the lobby at a certain time, I'm sure they would. Her room is like on the very back hall.
I hope your all doing well,,,I'm going to go wonder around & check out our new little ''world''. ((hugs))

[Jo6]

Hi Jeannie and Karen. Not sure I'm all tucked in and everything working right, but I'll keep trying! I hope you 2 are doing ok and your LO as well as possible. I have missed everybody. Will come back later. all my love, Jo

[tic chick]

hey everyone !

i didn't visit my mom today, but my husband did.

my son came down with some kind of stomach virus monday, then my daughter got it and yesterday evening it hit me with violent nausea and a splitting headache.

i'm feeling less nauseous today, drinking flat coke and nothing else. i'm scared to have half an english muffin for fear of getting nausea again. i have this phobia about throwing up...i always have. i will do anything to avoid it. one thing that really helps me is something called "emetrol". you can get it over the counter and it's an intensely sweet liquid, i'm sure it's all sugar, but apparently that does something to your stomach to stop making you feel nauseous. i hate pepto-bismol and it doesn't work for me.

anyway, my husband said my mom was dressed and eating in the dining room. he told her i was sick and she said then it was good i didn't come.

julia ! it's so nice to see you after all this time. i'm glad pati called you to check up on you. i wanted to, but i thought if you were sick then i didn't want to bother you or ken. he kind of scares me ...lol. we all hope to see you posting more soon!

thank you all for sharing and caring (i love you all),
jeannie

oh, i called the counselor who helped me 2 years ago when i put my mom in the nursing home. i just need to get a handle on all this loss i am experiencing. i think it's going to help a lot!:)

[mrsQ]

Hi ladies,
I hope you and your loved ones are all doing ok. I have been sick with a nasty cold & now Mr.Q has come down with it so I'm avoiding the NH. I think I may have got it there or the hospital but anyway I don't want to pass it around. Mr.Q & I went to see MIL last week before I got sick & she was the same. She let me giver her some soda but other than that just stared right through us. I hate it.

[tic chick]

hey everyone !

i went and saw my mom at the nursing home yesterday. she was eating lunch in the dining room. she seemed more alert and her eyes were all open and focused. she still was popping up with quetrions that didn't make sense, as if we had just been talking about them and she asked the next question. it's hard to understand what she means anymore. when my husband and i were leaving she asked where she was going to go. i said, "you're staying here because you live here." she said something like, "how will i know where to go?" and i said, "your room is right here. they'll take care of you." she just said okay and thanked us for coming. she always calls my husband by his first name, but not me. i have to admit it irks me sometimes, but i've grown used to that fact.

i talked to the man whose wife is in the bed next to my mom's. i asked the man if he minded telling me what was wrong with his wife, cause i told him i talked to her 2 weeks previously and she nodded and smiled when i asked her if her name was "christine." he says she has some kind of degenerative brain encephalopathy that causes alzheimer's-like memory loss. the woman is only 62 and she's had it for 10 years. her husband told me she is in the final stages, i know she is on a feeding tube and receives fluids through iv, because she is a choking risk and can't have anything by mouth. i didn't butt in anymore, but her husband told me he is depressed. he comes there several times a day and just sits by her side, reading, or on his blackberry or laptop. i've never seen anyone else there, like older children, so maybe they didn't have any or they all live too far away. it is so sad. the woman looks so young and she's very pretty, not many wrinkles or lines on her face. the man and i talked about knowing you have a fatal disease and so you tune out of life and that makes you forget more. he said she started tuning out a long time ago.

julia, i hope you are safe from that hurricane...i am thinking about you! also thinking about my daughter, who is near the east river in new york city. she is on the border of an evacuation zone, mostly for flooding, but she is far enough away from the east river to probably avoid that. i hope she takes precautions, though.

sad stories everywhere...

thank you for sharig and caring ,
jeannie

[Jim59]

Jeannie
As long as your daughter is not on the ground floor she'll be fine. They shut down all the subways, buses and commuter rail lines at noon today. The quiet is really eerie!

[tic chick]

hey everyone!

thanks jim. she was coming home from 3 days in the adirondacks on friday. everyone was telling her to stay there ! but i called her and told her to go on the computer and she should find info if her area was being evacuated. she lives on the second floor and she and her 7 roommates just stayed put all day sunday. i read her facebook post after the hurricane and she said it was nice to not work on a sunday!

i went to visit my mom today. she had her eyes closed, sitting in her wheelchair in the dining room after lunch. she totally didn't know who i was and she didn't know who my husband was either. she did say something strange. she said, "jean is still pretty." did she somewhere know i was jean? did my face look familiar? i will never know. chit, as julia would say.

she said she was tired, so i took her to her room and she was able to stand up and walk a few feet to the bed, but she laid down with her head way below the pillow, so i put the pillow underneath her head, kissed her and said i would see her next week. i think she was asleep right away.

i asked the nurse if she just got a pain pill. the nurse said, she got one a couple hours ago. the nurse said my mom was humming and using her feet to go all around the hallways the previous day. i hope i get to hear my mom hum again.

thank you for sharing and caring ,
jeannie

or as they say in polish when there is problems in the family, "hold yourselves together."

[mrsQ]

How is everyone doing?

We are just drying out from TS Lee down here, it didn't do any real damage but I'm not stepping off the driveway for a few days. The unofficial rainfall here was 11in. I sure do wish we could have sent that rain to TX with all those fires.
I went to the NH yesterday. MIL was in bed, the tv was on but she doesn't really notice it. They had it on golf & I switched it over to QVC that she use to enjoy watching. She didn't pay notice me much but I kept on talking. I figure it is good for her to hear a voice now that she doesn't have a roommate. I really don't mind that they haven't put anyone else back in the room with her yet. After not saying anything while I was there over an hour when I started to leave she said thanks for stopping by. I have given up trying to understand how this disease works.
Mr.Q is still sick, we still don't know what is going on just waiting for the 16th to go to New Orleans where I doubt we get any answers.
hope your and your LO are all doing ok.

[tic chick]

dear karen ,

i'm sorry mr. q is still not feeling well. i hope you DO get answers in new orleans!

it is strange about your mil not saying anything and then thanking you for the visit. and you're right. don't try and wrap your brain around this disease cause you will get all tangled up .

i think my mom was in 1958 yesterday. when i came in she said, "oh hello, baby." i am beginning to think this is less a term of affection as it is the way she sees me...as a child.

she asked me if i had fun at grandma's that day. i can't play 1958 or 1964. i play right now. so i answered, "mom, i don't know why you're asking if i had fun at grandma's because grandma is dead." my mom was kind of quiet after that. she said, "i forget a lot, i don't know why." but she didn't seem so upset about it. she talked about working at the hospital and liking her job and everyone liking her.

she had complaints about the aide that wakes her up in the morning and gets her dressed and moving. today she didn't want to get out of bed at all. so they left her in bed. the aide came in and i told her my mom was complaining about her, but i smiled when i said it cause i know the aide is just trying to get my mom out of bed and moving. the aide asked me about 2 names my mom keeps saying. i told the aide they were the first names of her mother and father. i think it's odd that my mom calls her parents by their first names instead of "my mother or my father". but that's another thing i'm not going to worry about cause i have no answers. the aide said my mom wore her winer coat all day the previous day and she put some things in a bag cause she was ready to go home. so they let her wear the coat.

she also mentioned getting out of the nursing home, but she only said one sentence about it. she seems to have lost the urgency to get out of the nursing home, she is forgetting more and more. and in a way, it looks like a blessing because she seems more at peace. not anxious about the future.

so, i will officially say my mom is worse in memory, but better in attitude or peaceful status. the bad and the good. i feel she won't miss me if i don't come and visit her sometimes, because i think she sees me as a child and a child can't come to the nursing home without their parents.

my mom is far away from here and i'm glad because she is less fearful.

i can do nothing about it.

i can do nothing about it...

but grieve.

thank you for sharing and caring ,
jeannie

[tic chick]

hey everyone!

my mom called me monday...well, she went to the nurse's station and asked the nurse to call me. i guess they know the people up there have advanced dementia and prolly can't use the phone themselves.

so, i had a totally incomprehensible talk with my mom. "first you go and then i'll follow". other weird stuff. the words made sense, but i had NO idea what she was talking about or what she meant.

my sister was there sunday and called me to tell me mom didn't want to wake up to visit with her. my sister was there around noon and i don't think mom knew who my sister was.

it seems to me it's almost the bottom of the hill for my mom. more bad days then good days. less memory of her family.

is it wrong for me to hope the cancer causes her to die before she is just a confused and/or silent body sitting in a wheelchair or laying in bed?

thank you for sharing and caring ,
jeannie

[mrsQ]

No it is not wrong to wish the cancer would take your mom before she loses ever joy & dignity. I would never have thought I would feel that way when we started down this road with my MIL in 05. I feel guilty about it at times but I have often wished the cancer diagnosis had been correct about my MIL because they said it would be quick & they could control the pain. Now she will moan but can not tell you she is hurting. My MIL was at 80 what most folks are in their 60's, she also never wanted to burden anyone with her problems. She will still sorta smile when someone speaks and we get some sort of goodbye but in between nothing. She just stares into space, not a book or the tv and the fact that she doesn't reply to her own name just kills me.If I say it loud enough she will but I don't think she knows that is her name. All the years with the AD were not bad it is just this last one where she doesn't seem to enjoy anything and can't move anything but one hand a bit that I wish she had not had to go through.
I'm not going to lie I feel like a horrible person right now. Mr.Q has been so sick this week and we have this huge burden/choice in regards to his health looming before us. I'm dreading the trip to New Orleans. I want to go see my MIL but I just feel that I'm going to loose it if I go to the NH. I'm afraid I will start crying and not be able to stop.

[tic chick]

thank you, karen for your thoughtful words .

you can cry, karen. i didn't know you had such a big problem looming ahead of you. would you care to share anymore?

and please don't feel guilty if you can't visit your mil for awhile because of mr. q's probs. you have to prioritize sometimes and mr. q needs your support right now. i know there might come a time when i won't be able to visit my mom like i do now. it's not that you don't love them, it's that you still have your OWN life to lead and that's okay because trying to do everything for everyone just makes you crazy. your mil will not get any better if you are miserable, that's the way i see things now. i have my own life. my mom had a life before and now it's changed to this one. nothing i can do about that. i can sit home and be miserable or do nothing and be depressed, but it won't make her any better. i just have to do what i need to do here, sometimes.

karen, i pray that things aren't as bad as they sound for mr. q and i pray you both have the strength to make good decisions.

take care of yourself and mr. q ,
jeannie

[tic chick]

hey everyone !

hey, you know i miss you joy and julia and pati . your words of comfort or support or encoragement mean so much to me. please start posting here again.

well, i just couldn't deal with my mom's visit yesterday or write anything yesterday. there is a nurse's aide that my mom calls "mother" because the aide makes her get dressed in the morning and generally tries to get her out of bed and doing something, even if it's only roaming the halls. so, since my mom calls the aide "mother" i call the aide "grandma" when i see her as a joke. and she laughs because she's prolly 20+ years younger than me.

the aide told me that the day before my mom had her knees bent up and her feet on the bed and she said she was in labor giving birth to "jean". well, that is me, so i figured she regressed about 4 years the past week, cause last week it seemed like she was in 1958. so, i found my mom waiting in front of the elevator and my husband and i took her to the sunroom and we sat and talked. my mom was talking about this little girl hiding from my mother's mother because she didn't know if her mother would want her to have this little girl. and she kept talking that they were looking for her and she was hiding in a good place cause she didn't want to go home. and i knew my mom was talking about me. i might have an idea of what she meant, but i'm not sure since i don't have memories of hiding anywhere. but it made me upset and i started crying under my glasses so i left the room for a couple minutes and just went out in the hallway. then i came back.

there was a woman in the room, she was in a different type wheelchair because her legs were straight out in front of her, as if she were sitting up in bed. she kept saying, "i want to go somewhere, someone please help me." well, a lot of patients say similar things, but i decided to ask her where she wanted to go, so i could see if i got an intelligible answer. so i asked the woman, "where do you want to go?" and she said, "bless your heart. i want to go to karaoke at 230PM and it's time now." and it was 230pm. so i wheeled her out into the hallway and the aide that was doing karaoke was coming and said she would take her. i told the aide the woman was anxious to not miss it.

so, it was getting time for us to go and i thought i would take my mom to karaoke. my mom said you had to have a partner, i think she meant a date...lol. i said, no, you can just go by yourself. so we went down to the karaoke room and i sang karaoke for about 15-20 minutes with the group. my mom remembered some words to "hey jude" the beatles song. so, i left her there after a few more songs and she seemed okay.

that's what i want the aides to do...just get her involved in something because she usually enjoys herself once she gets involved.

i hate to see this decline in my mom, cause i know she had an unpleasant childhood and if those memories come back she will be distressed like she was yesterday.

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

so i just couldn't handle it yesterday. the only good part was karaoke, because i do enjoy singing and i have a good voice.

thank you for caring and sharing ,
jeannie