What to do or tell??

Discussion in 'Caregivers' started by Milo83, Mar 4, 2002.

  1. Milo83

    Milo83 New Member

    I need some help as to how to handle some of the things an Alzheimer's patient does..I was always told by my mother's drs. and the nurses at the nursing home to try to change the subject or just try to reassure my mom that everything will be alright..Well sometimes, it's just not that easy..
    EXAMPLE: The other day while visiting Mom, she was back 25yrs ago in her mind, she was asking me about making funeral arrangements for her mother/father..I did tell her about twice that they have been gone for 25yrs..Naturally, she would just come back to them, she would not let me try to change the subject, nor did the phrase everything will be alright work this time..She wanted answers that required more than a yes or no..Like she said to me, "What time are you picking me up for the funeral?"She got very upset, insisting on me giving her a time..And should I have given her a time, that would probably be the one thing she would have remembered all day, and waited there for me, and would have gotten "out of control" when I didn't show up...Since some of you on here seem to have more experience than me, I would appreciate any suggestions you could give me..Thanks!!
    Hope everyone is OK!!
    Donna
  2. mom

    mom New Member

    I used to work in a nursing home. I think I got the alzhiemers patients because of my patience and genuine affection for them. I am no angel but I just seemed to click with them.
    One lady her name was Catherine used to wander the halls asking for and talking to her daughter. The nurses and people with more experience would say she wasn't there but would come back later. To me this sounded cruel because the daughter never did come. One day I was on duty and it was nap time. Cathrine did not want a nap she said she wasn't tired. Well I took her hand and she said that it was time for Mary (her daughter) to have a nap before her daddy came home. I think Mary was about 6 in her mind. I said ok but only if mommy laid down on her bed at the same time. She thought this was a good idea and went quite willingly to bed. She was asleep in 30 sec. She was always calling me Mary or her little girl. She was 4'10" and I am 5'7" but she would tell everyone that her little girl had come for a visit. What harm did it do to make her comfortable.
    Sometimes distraction will work but sometimes you have to enter the fantasy world they live in.
    I hope this helps somewhat.
    take care
    mom lynda
  3. Milo83

    Milo83 New Member

    You must be a very special person..You probably made that woman happier than anything else..I understand where you are coming from & I appreciate it..I have to try living in her "fantasy world" more..It takes a very special person to deal with people in a nursing home, and especially those with Alzheimer's or dementia problems..God Bless you!!
    Hope you don't mind a little chatter...
    My Mom has been in the home for over a year, and I go so much that some of the residents think I work there..lol..What really bothers me are the residents that do have family and they just put them there and "forget" about them, "maybe" coming to see them on a holiday..I stop and talk to anyone in the hall, & just seeing the smile on their faces, makes me forget my problems & makes my day..Just giving a simple compliment after they have had their hair done, or the pretty sweater they have on really makes a difference to them..My mom is in what I consider a very good nursing home, always willing to do their best and work and also take time out for the family..But then you have these families that never show up but on holidays and get very demanding about the one they are visiting, if they would only sit and talk with the staff once in awhile..Atleast that is how it is where my mom is..I usually have a conversation with the head unit nurse atleast once a week, so we can go over how my mom responds on a 1 to 1 basis with me..These people don't know what her life was like 25yrs ago, I do, and they are always there for me.Hoping that you understand what I'm trying to say..Once again, God Bless You for being so caring..
    Best Wishes...Donna
  4. mom

    mom New Member

    I used to get into trouble because if a patient told me what they would really like to do I would tell the relatives if I had a chance. One old guy I was 17 at the time so his 40 seemed old. Now that I am 46 he was just a young fella. Anyway he used to talk to me all the time. He would call me little miss sunshine because he said I would be walking down the hall not smiling and if anyone wanted me the smile came to my mouth and my eyes and it always amazed him how it lit up the room. Anyway one day we were looking out his window he was paralyzed from the neck down and could only move his one finger. It was a genetic disorder and he watched his sister die from it. But he was saying his family came and took him home for a visit and dinner every Sunday. He hated it. It was so much hassle for them to get him set up someplace and then they had to feed him. He was a big tall man and he hated his family seeing him like that. What he really wanted to do was sit in the car and go for a long drive seeing the country side. Sudbury is the nickle capital of the world I think so there are lots of rocks scenery and wide open spaces. And he wanted to get out into the fresh air and just look. I told his family this as a suggestion and when the head nurse found out she got very upset and told me to never tell the families what the patient wanted. But the next week I went into work and he said that some sweet little ray of sunshine made his wish come true. His family took him for a 2hr car ride. I didn't care that the boss had really been upset. I made a person feel human even if just for 2 hrs.
    One old lady loved to read tea leaves. So whenever I had a break instead of sitting down with the nurses I would sit with her and drink my cup of tea which I had to drink black with no sugar. And she would read the leaves for me. Each time was different and she explained it all to me. I had fun and she was in heaven because someone wanted her attention.
    This is my attitude when working with people. If it makes them happy and doesn't hurt anyone why not do it.
    Your mother wanting to know about the funeral was just wanting reasurance that everything was done properly and probably thinking if she heard the details and plans she would be better able to cope with her own life and death. I truly believe that someplace deep inside they know what worries them and stating things from the past is there way of trying to deal with what life has dealt them. I know there is no evidence of this but when I see an alzhiemers patient saying good bye to a husband or wife and the person left in the home cries it has got to be because the love for that person is there.
    What do you think?
    lynda
  5. Pixie

    Pixie New Member

    I agree with all, and milo83 when you said something about their fantasy land, I agree, it has to be hard on all of you, but has to be easier for you to enter their world, than for them to enter ours, they really believe in what they are saying, funeral arrangments and all, mom, I can see the sparkel in their eyes when someone like you enters the room, this is my only experience, and that was with my mother in law, with parkinsons.
    I read your post every day, may not reply, but just to see how everyone is doing, and I do care.
    Wish I could be of help to you, but really, you are of help to me.
    Thinking and praying for you and yours daily.
    [This Message was Edited on 03/04/2002]
  6. Charr

    Charr New Member

    Hi Donna, it is very frustrating trying to answer your mom the right way all the time. The drs. tell us ignore mom when she repeats herself over and over and I try, but I can't. She is my mother and she is asking me questions, it might be the same quesions for 2 hours and it might drive me crazy answering it, but I can't ignore her. It is much easier said than done. I try to gauge mom's mood, sometimes when she asks me about dad and where he is I will answer truthfully and say he is buried next to my sister and she accepts that. Other times she asks, then kinda answers herself, maybe he driving truck tonight. I let her think he's working if it makes her feel better. You are right, in that we can't tell what we migt say that they WILL remember and what we say they will forget as soon as we're finished. Unfortunately, it's just trial and error each minute we're with them. You are doing great with your mom! You hang in there and keep in touch.
    Mom, you sound like a very special person and those patients in that nursing home we're very lucky to have you to give them all that special attention they need. We are just need someone to take time out for us and care.
    Pixie, read your other post you had a good day and some quality time for yourself. From what I read you really deserved that time. Glad things were going good that day.
    Take Care and keep in touch
    Charr
  7. Milo83

    Milo83 New Member

    I was really glad to hear from you..Today was really a tough one for Mom & myself..I went to the nursing home early this morning, because my Mom had an eye dr. appt & she has to be transported by wheel chair van, she also has trouble walking and is in a wheelchair most of the time..She can walk with her walker as long as someone is there with her..She is too much for me to handle by myself, even though she only weighs about 117lbs anymore..Well anyway today was one of those days when she was looking for my Dad, she even insisted that I call my home and she wanted to talk to my husband to make sure my Dad wasn't there..When we got back from the eye appt., she said she wasn't going back in the home, she was going to walk to my house and check things out..I told her once,"Mom, dad has been gone for 6yrs,;he's up in heaven..Well 2 seconds later she asked me if I saw my dad with some woman that she used to work with her over 25yrs ago, now she thinks my dad is still alive and having an affair on top of it..She said she was so depressed and scared, I really felt bad for her, and tried to lessen her fears, but nothing worked today..I was even there when she ate lunch in the Dining Room, and she said she hated the dining room, she was scared..I tried to find out why, but she really couldn't give me an answer..I think part of it is because my Mom had 2 sugeries, one an illeostomy and then she had it reversed..After the reversal it took a few months to get her bowels back to normal (if they ever really do go back to normal)..Now whenever she leaves her room, she is constantly thinking that she will have to go to the bathroom..Half the time when she thinks she does have to go, she doesn't, she also often thinks she has messed herself and she rarely ever does that..Today there just wasn't any real answers to give her..You couldn't be in her fantasy world, because then you would have to have agreed that dad is having an affair, and that would have really set her off..And telling her the truth, didn't help neither..JUST ONE OF THOSE DAYS, I GUESS..Charr, I believe it was you who said your mother is on Seroquel, they had my mom on that in the beginning, but then she got worse, and the bumped up the dosage, but she wasn't responding the greatest, plus her appetite was decreasing..So back in Dec. the Dr. put her on Zyprexia, which seemed to help, then they also had to bump that up, but then after having that bumped up, they had to take it down again, because she was becoming like a zombie..They don't want to do anything right now, unless she gets "nasty" like she once was..She would try to hit the aides and all, and that is not my mother..
    So I spent about 5hrs with her today..My 15yr old son is home sick with "upper respitory infection", so he had asked if I could pick him up some McDonalds on the way home, I say sure..Well that went real well too, the soda fell and spilled all over the car..Guess this is just one of those days, I should go back to bed and start over..I have housework to do & laundry, but also have a splitting headache..Charr, are you from the United States..I'm from eastern Pa, in the good old USA..I really enjoy hearing from someone that has a loved one like me..Although your situation is a lot different, you still have your Mom at home and have a lot more responsiblity..I wish I could have mine at home..Maybe if it was only the Alzheimer's, but she has other problems too, she is also considered legally blind due to macular degeneration..Although when I did have my Mom home between surgeries, she wouldn't listen to me, she wouldn't eat the way she was suppossed to or drink..She just flatly refused until one day I had to call 911, because she became so dehydrated and had to have her admitted for a 23hr stay at the hospital..My mother was and still is a very hard person to take care of, it has to be her way, or no way..But that doesn't mean, I still don't go out of my way to try and help and love her dearly..She has been like that most of her life, so I can't blame it on old age, or her condition..Sorry, this ended up so long, just had to vent, I guess..Take Care..Thinking of you & your mother...
  8. annee

    annee New Member

    Just want you to know I am thinking of you and sending some 'coping' thoughts your way.
    Take care of yourself, so you can stay strong.
    hugs,
    annee
    ps. GB & I are doing okay :)[This Message was Edited on 03/05/2002]
  9. Charr

    Charr New Member

    Sorry the day was so bad, don't think me mean, but I had to chuckle when you told me about mcdonalds, it's like the day isn't bad enough but you have to spill soda all over your car. I know by then my thought would be oh heck, just let me sit here with the mess and let me cry awhile. My mom asks about my dad constantly too, sometimes for hours on end. I tell her dad's dead and she oh, I forgot, then a minute later I hear where's you father. My mom has also asked if he left her for someone else, and like you I don't want her to think that and try to say, no mom dad didn'tleave you on purpose he died. Sometimes I don't say anything, it's kinda like she is having her own conversation and I try not to answer, sometimes she drops it, sometimes not. If she persists I just keep answering. Sometimes no matter what we say, it isn't going to matter, because sometimes when I think I'm going along with her, her mind changes gear and she looks at me like I'm nuts!!! I guess there is no perfect answer to things, we take each day as it comes and cope through it, exhausted at the end of the day, but we will be ready for the next day. Some night when mom is particularly agitated I feel so desperate and alone (usually late at night, when none of my friends would be awake). I know they wouldn't mind me calling but I just don't, since finding the board it helps at night to see what's goin on with everyone else that is going through the same as me. I am from New York State, so we aren't to far apart. I am going to an alzheimers workshop tomorrow afternoon, maybe they can give me some new ideas on coping and I will pass them on to you. Did you find the book 36 hours, good. I have heard a lot about it, but have't gotten it yet, well, I need to have spare time to go to the bookstore!!! You take care and Keep writing I look forward to the messages at night when I'm at my lowest point of the day!!!!
  10. Milo83

    Milo83 New Member

    IThank you for thinking of me..Glad to hear your kind words..I hope things will get better than just OK with GB & you..Please take care of yourself too..Love hearing from you..
    My prayers and thoughts are with you!!!
    Donna
  11. NotMySelf

    NotMySelf New Member

    Just me again, just read this post. My mother did the same thing during her 2 strokes that took me from my home 3,000 miles away. I had to drive her back to her home in Calif. from Florida (alone) as her doctors did not recommend any other means of travel. During that road trip (which my mother never did before the strokes), she cried in the hotel rooms asking to see "her" mother one last time. (My grandmother passed away in 1961 at the age of 62), she thought I was my father (whom passed in 2001) and would even call me by his name. She thought we here in a city close to her own crying and yelling at me to turn the car around while driving and take her home..she did not want to go for a drive. She told me at one point my father (deceased) and my nephew (deceased) where waiting for her at her house and she needed to get dressed and walk home to make them dinner. (We were enroute to Calif. staying overnight in Texas) I did not sleep those 6 days of travel and how I made it, God only knows. Add this to my other post and perhaps you will see why my depression, is peaked. Not only am I in a place I don't want to be, I am still reeling from the drastic relocation made in a matter of days, to the horrid drive cross county in account to a sick mother and the going on's for the last month here.
    So, yes...I've experienced it. Her doctor said it was due to the 2 strokes on the back left side of the brain.
    When I would have to pull over at a rest stop area, she attempted to call over a cop to tell him she didn't know me and I was kidnapping her. I had to do all I could to restrain her within reason.
    She could not grasp the fact I had her in Florida with me until I could travel the 3,000 miles to get her home.
    (by the way, she took a Greyhound Bus out of her hometown in Calif. and removed in Cleveland Ohio by authorities and ambulance. She was.......going to the east coast, unescorted when the strokes occurred. At that point, she was going home to be with her mother and father (both passed in 1961)....yes, horrific and sad.