She has been progressing through the dementia stages almost textbook. So I knew this was coming. She is in a NH and receiving great care. But when I left yesterday the sadness and confusion really hit me.
I have found a home here in this forum. Just looking for some tips for coping at this stage. Thanks.
The difference is I was with my mother all the time caring for her 24 seven I had all the stock market buying and selling done by moving computers from my room into her room put in a refrigerator in her room stayed with her in her room most of the time so that she never had to call my name out and I wouldn’t be there
so there’s only two things you can do if you want that in one of them is you’ll need to be with her more and you have to talk to her about things that she remembers when you’re with her whatever that is since you’re the expert on all her history, and nobody else around her knows anything about her really you know what songs she likes to sing if you love your mother, you won’t care what other people think you’ll sing the old songs to make her happy and talk about her mom and dad and brothers and sisters if you have to just like they’re still alive to make her feel good
putting people in nursing homes and having strangers take care of them is not really normal and when you flip it upside down and say OK let’s see what happens if we take all our children all our toddlers and drop them off while we go to work and then will just stop and see them on the weekends and then wonder why they wouldn’t know us Connect!
Just calling it as I see it and I understand that not everybody in the family has prepared themselves to be able to be there for their parents like I was and you don’t get any help from Society about that either but your mother would live longer if she was around you all the time and you kept increasing your skill and you made her the focus and that just may be impossible for you to do. But the opinions against that are many and varied, as you will find in politics and religion, and it doesn’t matter if your name is Jesus people have their mind made up but for those who know me, and that I help on a regular basis, we understand that Alzheimer dementia is not a lifetime condition and can be turned around.
I will only tell you one clue. The problem is exacerbated by inflammation in the brain. OK? that is one thing that nobody can scientifically or medically deny to you is the truth that inflammation in the brain is a major if not the major factor implicated in Alzheimer regardless of all the other. Oh, but there’s tangles. Oh, but there’s yeah yeah yeah yeah yeah yeah
If you take care of the inflammation, your mothers brain stand a good chance of healing itself just like if somebody gets slugged in a boxing match, and they have a concussion that is a bruise on the brain, and the brain is healed by the body over time until the bruise is gone but with Alzheimer, the poor dear has so much going on in her brain.
all those things people will tell you are in the brain and that there’s no way to get rid of all of those things that attack her brain, they are there. and the resources applied by your mom’s body to heal those things has a limit just like you have a limit if I add 100 pounds on your back and say OK go about your day and do what you want to do and you say you’re crazy I can do about 1/10 of what I can do carrying around this big hundred pound dumbbell on my back: we’ll, your mother has a dumbbell on her back and that dumbbell is inflammation in the brain and if you love your mother, you’ll find out what can you give her that stops Inflammation in the brain.
I can put you in touch with a neurologist that understands exactly what I will explain to you. Best regards.
when a nursing home doctor removes medications long established in a patient’s life quite often. They do so in an arrogant manner and their superficial cursory review since they are in charge of 100 to 200 patients just trying to figure out how many patients you could really get to know if you had their job
Welcome back.
Yes Ellen, that was the confusion over me also . Reconation of family members through me. So sad and heart feelings . I was her sister once a friend, mother ect.
I cried hard alot. Then I read in a book , be whom every she calls you . That keeps her happy , because when you keep saying I'm your daughter she not having it .
She doesn't remember her brain is stuck then suprise one day she remembers your name. What ever your face recognition she knows it's the name . Smile alot at her that might assist her .
Ellen no matter what she still your mother. Hang in there, she still conversing with you . Time will come when she sleeps alot and get speech is humble no language words. That's really hurts . Enjoy all the time you can . Time get photographs of you and her .together. ask nurse to take it for you. Small photographs book to make for you . Make mother a collage in a 8/11 photo frame for her to look it . Times she will know family .
Ellen life has given me names I couldn't believe. So only know name just a title you still have mother . Join what's my name today .
Brown Sugar......
So while he may not have "known" me he knew I was safe, that I would care for him and that I would make sure that he was cared for. I suppose that is all one can hope for when you are being cared for by another person and completely dependent upon that person.
The one thing that did happen to me as I realized I was less family than friend was almost having to force myself to continue caring about my mother as a daughter would. As her personality slipped away, she just became a kind of an odd little woman I knew, and I found I had to start making a concerted effort to visit or care at the same level I did when she was the mother I'd known.
Eventually I got past that, but there was a time when I wondered if me showing up made any difference any longer. Deep down I knew it did, and that's why I kept going and I'm glad I did.
Many of us have walked the road others are now traveling. If we can make the path easier that is what this forum is all about.
Have you ever read, "Tuesday with Morrie?" It was made into a film, too.
My heart goes out to you and I hope you find comfort on this journey.
This, Dementia, is a rollercoaster of emotions, stresses, anxiety, hopefulness, hopelessness and everything in between.
You take the good days and be grateful for them
You take the bad days and remind yourself that tomorrow might be a good one.
On the good days you talk, hold hands and thank her for being a good mom.
On the bad days you keep your visit short and thank her for being a good mom.
I only recall one time when mom hesitated when I asked, "What is my name?" She looked closely, paused, and said, "Don." It was difficult to see a once vibrant woman slowly decline, but I am content with the fact she was able to remain at home until the day before she passed at age 93. As an Eagle Scout, I took an oath that begins with "On my honor, I will do my best..." While I sometimes question certain decisions I made, I can honestly look back and say, "I did my best." If you can say that, then you have succeeded as her caregiver.
As hard as it is, always remember you are doing the best you can to make sure your Mom is cared for. A part of her will always hold a spot for you, even if she can’t remember it or verbalize. The connection of family never goes away. You now hold all the memories for the both of you. Share stories, pictures, ask her about her childhood. These will be memories to carry you.
Sorry this was so long. I hope this helps some.
My mother forgot me who I was in a grocery store parking lot back in 2009 or 2010. The security had to come up to the car she was screaming so hard. The security guard realized once he saw my ID and her's, and then when she realized the guard was calling me Greg, she realized it was me. I immediately doubled down on figuring out how to reinforce her memories. I began learning Czech, her first language on the farm near Dallas growing up. I recorded us talking and singing and making up songs. We're both songwriters. I could reinforce her memory playing those back and she could hear it was me, and I knew the songs. I learned her favorite old songs, the polkas she loved, and would sing a polka coming down the hall to her room. On the physical side, I began intense study of brain pills, using my degrees in Psychology and understanding of how the many components we call "the" brain actually works. I got deeply into those, called nootropics, back 15 years ago. I took her out every day to socialize her at the BBQ restaurant, the chinese food restaurants, her church not mine, every week there, and every day out to eat good food somewhere. I joined the Lions Club around 2010 and I took her to every meeting I went to. I never went somewhere that she didn't go with me, and if she had to go somewhere, I went with her.
You see, in 2004 Dr. Calle, Gerontologist, gave her and 100 patients of his 5 years max to live, because they all reached a certain stage where it's like clockwork and they don't make it past five more years. He said there was no way to prevent it. I thanked him and we went home. In 2009 he called us in to say all the others were gone now. He wanted me to know it. Only mom was left. He said they stayed late to go through all the charts, weekends, holidays, pouring over everybody's charts from that group of 100 that died to find the difference. There was none, he said. So Dr. Calle began asking his patients from our area by his office, SE San Antonio, did they ever see a man and an elderly lady, the man ina wheelchair? Yes. So he would ask about us at the grocery, the restaurants, everywhere. Walmart. He said you answer all your mom's questions. Every time she asks them. No matter how many times she asks them, the same question, over and over. Yes sir, that's to lay down the answer physically in her grey matter. Physical memory. You let her drive the wheelchairs at HEB and Walmat. Yes sir, and she doesn't crash into things or people and drives courteousy at the intersections of the aisles. I know. You know? Yes. You give her all the meds I prescribed. Yes. But how do you know that? Every time you ran out on the weekend, it was the right time to run out. You didn't have any for Sunday and fearing a disaster, you always called the office on Friday or Thursday to ensure she had those. Oh, the pharmacy records showed you I always ran out on the right days. Exactly. All of those things that you did are why you mom is still aloive in 2009 when the others are all dead. Nobody else had a son like you, or a daughter or father or mother or anyone who stuck by them 24/7/365. You're it. And that's why I called you in, because I wanted to honor you for what you have accomplished. Mom went on to live another ten years, at which point APS deemed me a devil in disguise, due to my constant devotion. They never talked to Dr. Calle. They made their own minds up. They took my mother away with 6 cases at the same time: temp nursing home, Methodist Hos, a north side NH. My bro. lied and they gave him charge. He abandoned her and I never saw her the last 500 days. She died.
So I know what I was doing. I put my very life on the line for my mom to make sure it was easy for the nurses to get things done. Did they appreciate it? No. They slandered me. Vilified me. When I said, This has to be wrong: every single one of the four trashcans in mom's room are completely full to the top. Here's some pictures of it. WHAT? How dare me. Their response was immediate. Inside one hour of those pictures being snapped on my iphone, THEY installed a movable video and aimed at me matter where I went. If I was on the east side of her, they came in and brought it to the other side and aimed it at me, stupidly saying they wanted to get a different view of HER. Then when I went back to the other side, or to my bed (I demanded a bed to even sleep in the same room to help her communicate, to reassure her. Remember, she had been considered late stage Alzheimer since 2004. It was no 2019. FIFTEEN YEARS LATER. Ten years since the great meeting with Dr. Calle.) I was trying to save my mother.
When she gave birth to her youngest son, my little brother, he kicked and hit on his way out, a very hard birth, and she got to bleeding really badly. Hemorrhaging. They couldn't find a vein. It came down to the wire, daddy said. They had been trying and trying and she was limp and they said to both the nurses trying to find a vein, it has to be now. My daddy was freaking out. I was there, almost three. I heard everything, saw mom dying before my eyes. Suddenly I heard the one nurse scream out that she got a vein, and they hooked it up and the blood starting pouring in. Mom came to. My dad was crying. I was in shock.
Now it's 2019. Mom has Cdif in the Methodist. She has a tube in her rectum to stop the diarrhea that was constant. Just let it go through the tube. But now, she was beginning to respond. When I brought her there, the family doc just said keep her in bed and give the prescription for cdif. But all the diarrhea took its toll. It was a contant toll to stay awake 4 days straight and wait for the thing to break. But it didn't break. Nothing the doc said worked. That's how we got to the Methodist.
Now she's getting strong again, is back. She went in, she wasn't aware. She was out. No response to me. Now she was back. She was eating. Starting to take the meds. But in her strength, she noticed the rectal tube. She wondered what it was. She hid her hands under the sheets and tried to look like she wasn't doing anything. It's all on camera. I didn't want to scare her and I didn't want her to jerk it out. All I could think of was if she started hemorrhaging, in this condition, not 35 but 97 now, I couldn't let her hurt herself. So I lifted the sheet to find her hand buried between her legs. So I calmly said, That's a rectal tube. See this brown stuff? that goes into a bag so you don't have to get up to do do. You have diarrhea and it made you weak. Then I touched her HAND and they see that on the camera. It's five feet from me. I take her by the WRIST and calmly lift up till I see fingers and begin taking one finger off at a time while talking how you have to talk to keep things going smoothly. Phew! She understood. And she never did that again. The hospital was notifed by security who was monitoring the camera that it MIGHT BE sexual in nature. I was banned 11 days. The last four nobody told me mom had NO water, NO food, no feeding tubes. They gave her 11 days to live on April 11, 2019 and sent her to the nursing home. I alone immediately fed her!
My Daddy Forgot My Name
My daddy forgot my name today
It seems so strange to say
This day became eventual
As daddy fades away
Letters on white paper
Not etched into his mind
Just a word, just a word
A word he could not find
Gone... but forgotten
Blurry time and space
Oh what's in a name, Dad?
See the smile here on my face?
We put our trust in God
One hour at a time
We cling onto Dad's spirit
As time erases his mind
Our love knows his heart
His heart, so strong and true
We remember his strength
And the things he used to do
We treasure every moment
We treasure every smile
From dawn to time for bed
Facing each and every trial
Outside a storm is brewing
The world is in a hurry
Unkind words and heartbreak
Stress and work and worry
In the arms of God,
Where we are living still,
Peace returns, enters joy
Blessings are so REAL!
My Daddy forgot my name today
And, that's OK with me
Believing in what God has planned
Is all we will ever need
-Debi Huizar
One day mom and I were chatting about the ranch dad grew up on. His name was Don. She asked me how I knew Don. I said what? Don is my father! Her eyes grew wide. After a moment she asked does he know about you? Talk about a gut punch. Just when I relax and feel like things are not so bad, those moments pop up and show me exactly how demented moms brain is.
I felt like I had been punched in the stomach, the first time it happened with my mom.
I pray for help from God, every time I walk into my mother’s facility. For help to face each new grief without falling to my knees with sadness. For help to keep a smile on my face as my mother’s body is there in the room, but not her mind.
He gives the grace for each and every visit.
You’ve got lots of company, here on the forum. Big hugs!
I was with my Mom one day when we ran into someone we knew. The woman asked my Mom how her kids were. Mom indignantly said "I don't have any children!". Yep, I was standing right there. She had me at 21 so I knew then she had gone back to the years before me.