January 6, 2018 – It’s hard to believe that this conversation mama had with herself was over 10 years ago. It was November, 2007 and she died in December, 2007. I loved that special lady so much. Her dementia journey did not cover years (so thankful for that) though we realized she probably had it for quite a while before we caught on. She was kind, thoughtful and had such a pretty smile.
The only time she got mean was when the home health staff tried to bathe her. I was given the evil eye because I was allowing that to happen. Once the bath was over she went back to being wonderful. I never saw that look from her in all my life before then.
She was even nice when she’d tell me that the people who lived upstairs (that was my husband and me) kept the house too cold. She’d never liked dogs throughout her life but our dog Nacho became her best friend and slept on her bed with her. She’d also feed mama’s food to Nacho using her own fork. She’d tell me really quietly sometimes that the food she was fed wasn’t fit for a dog. It was some of her favorite food that I had cooked throughout her life so we got a chuckle out of that.
Original Blog 01.09.15 – Roy and I are deep into constructing a new house which takes up lots of time. So for the next couple of months I’ll be posting this blog every other Friday. Once the house is finished I’ll go back to weekly publishing! Thanks for following our blog!
I planned to wait a bit before posting today’s dialog until you all knew my mom a bit better. When I was putting the finishing touches on the original blog for today I kept thinking about this and realized this is what I’m suppose to share today. Possibly someone out there needs to read it because their loved one is in this stage or nearing it. The dialog below was fairly typical of a lot of evenings with mama during the last stage of Alzheimer’s.
I will believe these ramblings of mama’s will be very eye opening for some. When I’ve referred to “this bizarre little world they live in” this is that world. Sometimes these ramblings would go on for hours and skip a few days and then pick up day after day. Having a baby monitor handy to take with me wherever I went I was able to get away from the constant rambling but still be in touch so I could step in if she really needed me. If you have the money to buy a monitor with a video screen I’d say get that. I didn’t have that but feel it would be a valuable tool in caring for them.
Something I want add here is that even though she doesn’t say it in this piece below she began calling her bed her “rack”. Anytime she hollered out it would be something about getting her off “this rack”. Took a bit to make that connection but since she said it numerous times a day we figured it out! Here we go with:
Sunday night November 18, 2007 – 9:35 p.m.
After me going into check on her twice when she’s called and Roy going in to check on her twice I went upstairs to our bedroom and I’ve been listening to mama talk through the baby monitor for about an hour now. Since I can’t go to sleep until she’s asleep I decided to type what she’s saying.
“Where is my chair. I can’t find my chair. Someone took my chair. They don’t have anything better to do than to take my chair.”
“I have so much to do and I never get finished. I have so much to do but I enjoy doing it. Sometimes I think I do too much but sometimes I enjoy it. Uhmmm… But I need to do it and I enjoy it. Uhmmm it hurts but I enjoy doing it. It hurts too.
It hurts but I have to do a lot of stuff. But you know it’s good and you’re suppose to do it. But it’s hurting you when you have to do it. It hurts, because it’s something you’re suppose to do. You’re suppose to do it, you need to do it. You have to do so much. You need to do certain things. Whether you like it or want to do things but that’s the way it goes. Oh Lord help me to realize it. Certain things you got to do whether you like to or not. And it hurts whether you like to do it or not. Thank you Lord for giving me the common sense that things have to be done whether you want to or not. “
“So many things I need to get so many things off of my mind. And I need so badly to help and do things that I mainly would not like to do but Lord knows no I can’t do everything I want to. And I just can’t get everything done. NO and I can’t get everything done for everything. Ohhhh I know I can’t … but I gotta try. I need to try and I do try pretty hard sometimes. I do try. But it doesn’t always work out for me. It just doesn’t work for me. My mind just doesn’t work in that way for me. Ohhhhhh ……. I wish it didn’t. Lord Help Me. Oh I know the Lord would help me. I feel like I need to do. He knows what I need and I just can’t do it. And Lord you know I can only do so much and you know my feet and legs are just hurting so much. Help me please Lord, I can only do so much, ohhhhhhh. Help me Lord. Please help me.”
(I went downstairs to see if I could reassure her and if she needed something and she said “no, I’m fine” and then “thank you darling”. I go back upstairs.)
“Lord Help Me please, I’m so limited in what I can do. I can only do so much and then….. , help me please. Lord help me please, cause I’m limited in what I can do. Ohhhh. My girls love me and I know they do but I can’t help it. I can’t help but cry. I can’t help it. I deserve to cry. “
(I went back downstairs and told her I loved her and covered her back up. She hollered “I love you” as I was leaving and I told her “I love you too.”)
She blew her nose
“I can’t believe it. I can’t help but cry. My ….. just hurts hurts hurts. And I can’t help it. Uhmmmm. My behind hurts too. My stomach hurts so bad. I don’t know why. But it hurts. I don’t know why. Uhmmmm. “
Long silence – She blew her nose.- Long silence.
“It hurts my behind so badly. Long silence. Oh it hurts so bad. Uhmmmm. I try to keep it from hurting but I can’t help it sometimes. Uhmmmm. But I try and it doesn’t always help. I wish somebody could help me to do that. It doesn’t help me though. No it doesn’t help a bit. Uhmmmm. Silence. (It’s 9:54 now.)
It didn’t help, not a bit. No matter how much you try to help it just doesn’t help. No matter how much you …. for it, it doesn’t help. It doesn’t help a bit. Silence. I don’t think so. But it seems like it doesn’t matter, matter how much you try to help it but sometimes it doesn’t seem like it does. Sometimes…… and then it seems like it hurts more and more. And hurts and more and more and hurts. (She’s getting quieter now with more silence in between sentences.) I can’t help it, it seems like. Hurts more and more. It seems to be worse and worse. Sometimes they get worse and worse. I guess I can’t do anything about it. Uhmmmm. My knees get worse and worse too. And the dog gone feet they get worse and worse and worse. And my feet do to and I don’t know what to do. I can’t get them any better, I don’t know why they won’t get better. Feels like they get worse and worse, instead of better. Uhmmmm. They are getting worse NOW. I can’t get any better. They don’t get any better. I can’t get them any better. ………………
Somebody could come and help me. Somebody could come and help me a little bit and all that pretty chair all over there you could come and help me a little bit. (She starts getting louder.) Come and help a little bit it won’t kill you, it might make you feel better for helping somebody. Somebody it wouldn’t hurt you. I don’t think it would. I don’t think it would hurt you at all. It certainly wouldn’t……… Uhmmmm. I don’t think it would. Uhmmmm. A little bit of … wouldn’t hurt anybody. Uhmmmm. Uhmmmm. It never hurt, might not make you happy but it wouldn’t hurt you. It wouldn’t hurt at all. It wouldn’t hurt at all, it might not help you any but it wouldn’t hurt. They’re never busy, they’re just blabbing, blabbing, blabbing.
Oh, I lost a shoe (she doesn’t have any shoes on, just socks). Don’t know where my shoe is, well heck another shoe lost. Another shoe gone. Another shoe gone (she starts to cry). Oh where is my shoe. Somebody took my shoe or I lost it. I lost my shoe. Oh dog gone I lost another shoe. Uhmmmm. It hurts when I lose another shoe. Uhmmmm. I lost my other shoe. Oh what am I do, what am I do. Oh, I lost another shoe. Dog gone. Somebody come help me find it. I lost another shoe. Uhm, I can’t find it. I can’t find it. Somebody help me. Somebody come help me, please. I can’t find it. I can’t find my shoe. Ohhhh, they are hard to find. I can’t find it. Somebody can come and help me find them. Could somebody come help me find them. I might not, I’m gonna try. If somebody would I sure would appreciate it. Silence. I can’t find it no where. I can’t find it no where. Noooooowhere. My feet and toes hurt soooo baaaad. I can’t find it and can’t feel them anywhere.
Oh I wish I could. Is there anybody in the room? Rosie? I thought maybe there was one of the girls in the room. Rosie? Shoot I thought it was one of the girls. My …. was hurting so bad I thought it was one of you all. I needed to know who it was. And I couldn’t see and I didn’t know what to do. I didn’t know who it was and I just wanted to be sure. OHHHHH. I didn’t know who it was and I wanted to be sure.
(I go downstairs and peek in on her but she’s laying there smiling and quiet so I go back upstairs)
My knees hurt so bad and I didn’t know who it was and I just wanted to be sure. I just wanted to be sure and my …… Somebody can help me if he can. Somebody will. Who is that touching on my feet (nobody). Is that somebody touching my feet? I hope it is somebody that is willing to help me for a few minutes. Why didn’t you answer me (sounds mad)? I don’t bite. Please somebody help me. Please somebody help me. Please somebody help me. I can’t get out of this rack. I can’t get out of this bed. Somebody please help me. Please. I can’t get out of this bed. I can’t get out of this bed. Somebody help me PLEASE. Don’t be so greedy. I’m not gonna hurt anybody.
I don’t hurt anybody and I don’t bite anybody and I’m not gonna hurt anybody but I would appreciate it if you would help me, just for a little few minutes.
(I went downstairs to see if there was really anything I could do and when I walked in and asked she said “no, I’m fine”. I said you were calling for help and she said “I was?” So I went back upstairs)
“I surely would appreciate it if somebody would help me. Rosalyn. Rosalyn. (She says calling me, loudly. I just went down there so I don’t go again.) Rosalyn. You don’t have but one mother in here calling for you. (Of course I go back down – her underpants and socks are off and she says she doesn’t know how that happened – I put new underpants and socks on her, tuck her in and tell her I’m going to go back upstairs and try to go back to sleep so maybe she’ll go to sleep.)
Never, never. ……. But it hurts and it hurts and it hurts. And you can’t do anything….. Uh hummmm. Nothing, nothing, nothing. I tried so hard so many times. So many times. I’ve tried and tried so many times and it didn’t work. And I’ve tried and tried so many times and it didn’t work. It didn’t work, it didn’t work but I tried and tried and tried. But I really tried.”
Long Silence – sleep maybe?
“Who is it, who is it, who is it? Somebody say something. They’re taking the cover. We need it we need it cause it’s cold outside. We don’t need it, we need it rather because it’s getting colder outside, outside. Getting colder outside, outside all the time. It’s cold forever. …… somebody must have borrowed some of it. No somebody must have borrowed some of it. Somebody must have borrowed some of it cause some of it’s gone. Goodness sakes you never know, you never know.
Okay – enough typing – It’s 10:40 and she’s still talking so I’m going to bed and listen to her on the other monitor and pray she goes to sleep soon.
The following is another brief ramble the next day.
Nap time on Monday – 1 p.m. Don’t turn it over like some people do. Please please please let people know you care about them. And when you can help somebody, they know it. And it means a lot to them. It hurts when you know. It burns some up when you don’t show that you care about them. It means a lot to them. You need to let them know…… I need to know. Somebody help me. Please somebody help me. I can’t get up.
Please come back next time when I’ll share another aspect of Alzheimer’s to help you understand it better. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is firstname.lastname@example.org if that is an easier way to communicate.
Until next time,
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