What's Happening in our Caregiving World?

[mrsjerome]

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

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

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

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

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

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

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

Take Care
mrs j.

[Buttons2]

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

[tic chick]

hey everyone !

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

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

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

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

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

anything else would be a shame.

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

[tic chick]

hey everyone!

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

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

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

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

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

[Buttons2]

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

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

(((hugs to all))) Pati

[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