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Kokopelli
01-12-2007, 10:29 AM
Hello,

I'm new to the site, but not the disease. My mom was first diagnosed when I was about 4 years old. For most of my life, she did really well. Within the last 5 years, this has all changed...and I find myself needing to talk to someone who understands.

My mom is only 60 years old, but she has lived in a nursing home for the last 5 years. She has SLE, ESRD, Sjogren's, and Scleroderma. On top of all of this, she has had to have back surgery because of a MRSA infection in her bones and has lost two fingers due to SIRS.

I realize that the woman I go to see every other day at the nursing home is not the same person that I grew up with. She is so fragile and seems so lost. I never imagined in my wildest dreams that my mom's whole world would someday be comprised of one half of a hospital sized room, and her recliner at dialysis.

It breaks my heart and sometimes I just have to sit in the parking lot before I leave and cry. I constantly have to re-assure my grandma that my mom is not mad at her, that she is just not her anymore. She love us and I know she does...but she just....I can't even explain it. She goes some place sometimes, within herself and you can see it on her face when she goes there.

I just want to scoop her up in my arms and make it all go away...and I can't.

How do you all deal with the fact that there is not a dang thing on God's green earth you can do to make them better?

With every trip to the hospital, she seems to get weaker and weaker.

Southernbelle
01-12-2007, 04:17 PM
I am so sorry that you are having to go through this! I know how horrible it has to be for you. My mom died in June, and I will never get over it. My sister and I had to put my dad in a nursing home. He is in a wheelchair and can not walk at all. He broke his left hip twice within a 1 month period and he had polio when he was a boy and it has taken its toll. I have the same feelings you have when I go to see him. He also has dementia and sometimes when I go see him, I feel like he looks right through me and is off in some other world. Some days he is like his old self, but most days he is "out there." I know all too well about the look you are describing that your mom gets on her face. I hate that look. I always feel bad, but then I look around at some of the other people who are in there and I realize that he is doing better than some of them, especially the ones that are flat on their backs in bed. Just visist your mom as often as you can and let her know how much you care about her. Even though she may be in that "place that she goes" she knows that you love her. I feel bad for you. Your mom is young yet and this is awful. Try to stay strong and be there for her as much as you can. In some ways, this is probably harder on you than it is on her. Take care of yourself and God bless!

Kokopelli
01-12-2007, 07:54 PM
Thank you Southernbelle for your comments. It does sound like you know exactly what it's like and that look.

I think the human mind is an amazing thing and that place they go, I do believe that it helps them to deal with and live what they have to endure. It just hurts to dang bad.

*hugs* to you.

Southernbelle
01-12-2007, 08:53 PM
Sometimes when I visit my dad, I will be talking to him and he will be in another world, another place, another time. It is like he does not hear me. I often wonder what it is that he is thinking, but I don't question him. He is 83, and like I said, somedays he is just fine. You are so right about the human mind. There is just no way to get inside anyones mind and see what is going on. The look is like a stare that does not end.

"hugs" back to ya!

MARYCAIN
01-12-2007, 09:21 PM
I think maybe they are back in the past, re-living happier times, being young again. My mom went through a long, lingering illness - sometimes when she had "that look" I would say something to her, and she would smile and call me "Jen" (her sister, who died before I was old enough to remember her). So I think she was back in her childhood, where she was safe and happy. At least, that's where I like to picture her.

Southernbelle
01-12-2007, 09:48 PM
I think you may have something there! I had forgotten, but my dad has called me by my moms name a couple of times since June 23rd of 2006, the day she died. It's funny, but my dad can tell me things that happened before I was ever born, and I am 54 now, but he can't remember what he ate for breakfast! Lol. We'll probably all be there if we live long enough. Geeez, maybe I'm there already!

:D Grace

mnjodette
01-13-2007, 01:24 PM
My Mom has dementia (Alzheimer's) and has been in a nursing home for some time now. She held her own for quite a while, and Aricept helped. But now, she's in an advanced stage and watching the woman I've been so close to my whole life just gradually disappear is a heart breaking thing. Kokopelli, I have also sat in the parking lot in tears. I think illness makes some folks retreat deep into themselves, and like many have said, they retreat to happier times. Keep visiting your mom, Kokopelli. She knows you're there, on some level, and feels your love. And, something else to remember: the more family is involved, the better the care. I've seen it time and again at the nursing home.

MARYCAIN
01-13-2007, 04:59 PM
One of my favorite songs to perform is "The Slender Threads" (Kathy Mattea). Although it wasn't written about Alzheimers, the first time one of my friends whose mother has Alzheimers heard it, she said it described her feelings perfectly. I think it's also true for any of us trying to hold on to elderly parents.

The Slender Threads

The dawn of youth, the twilight years,
The tender life we hold so dear
The memory of the smile, the tear,
The slender threads that bind us here.

I look away from you,
trying to hide my tears,
Praying for grace at the end of the day.
I want to hold you and never let go
but I look up to find
that you're slipping away.

The dawn of youth, the twilight years,
The tender life we hold so dear
The memory of the smile, the tear,
The slender threads that bind us here

I long to speak with you,
I try to reach for you,
Wake up to find that there's nobody here.
I walk away from you,
Still I can feel you near
Forever with me, forever alone.

So strong they hold
till we let go
and still they're there
as light as air.

The memory of the smile, the tear,
The slender threads that bind us here.

Southernbelle
01-13-2007, 06:14 PM
It was one of the hardest things my sister and I have ever had to do when we placed my dad in Arkansas Health Center. It is better than any of the nursing homes around here. I think I mentioned before that it is a cross between a hospital and a nursing home. The waiting list is usually a year or more to even get in. The reason my dad got into the center, I believe, is because of all of the pull from our local hospital. I believe with all of my heart that my mom would not have died the way she did if the doctor in the ER had just listened to me. I took her there 2 days in a row and told them repeatedly that she had heart disease. The doctor insisted that "heart trouble was not indicated, tests are not warrented" and sent her home, after giving her a good dose of ativan (!!) where within 30 minutes she had a massive heart attack right in front of me. I see it in my minds eye every day. After that, they went out of their way to do any and everything for us. I think they thought we were going to sue. I regret and blame myself everyday for not taking her somewhere else, but we have always used this hospital and had always found it to be good. NO MORE!
You could not be more right when you say that the more the family is involved, the better the care. I go to see my dad every other day, and not always at the same time on those days. My sister goes on the days that I don't go. On Saturdays, we go together to see him. I am more involved than my sister because she works full time and it is harder on her. I also agree with you about no matter how far out of reach our parents may seem when they reach this age and are in the care of others, I believe they know who is there and even though they may not talk, they just have to know in their heart. I am sorry that you are going through this with your mom. I wish so much that my mom was still here. Besides my husband, she was my best friend, and we talked on the phone sometimes 4 or 5 times every day. I miss her so much. It really makes me mad when I see some people talking to their parents the way they do. It is so disrespectful. You know what "they" say, what goes around, comes around. There are so many of us who would love to have our parents the way "they were." God bless you.
Grace

Southernbelle
01-13-2007, 06:17 PM
I love the song! The words are so true and beautiful. It is so hard to lose someone you love. That is the very way I felt when I found out that Larry had all of these diseases. I just knew that I had lost him. Now I have re-newed faith that he will feel better. I have to feel that way, it is the thing that keeps me going.

Grace

MARYCAIN
01-13-2007, 06:56 PM
I think music is part of what keeps me going and helps me make sense out of life. And singing always brings back happy memories of my mom - I learned a lot of songs from here, and she gave me my first piano and guitar lessons.

kmstrayer
01-15-2007, 03:06 PM
It must be so hard for you to deal with visiting a loved one when they not only are experiencing physicial symptoms, but also seem to "be away" at times. I have been spared this pain and loss, although I can imagine that you are grieving for the mother that was. Years ago, I went through a bad Lupus relapse right before Christmas. My three children were very young so I went to my friend's home so that the children would not be affected by my illness, (although I think they were more worried not having me there). I was very weak and the pain was extreme. I was not on any medication other than ibuprofin. I couldn't sleep, eat, etc. During most of this time, I was definitely in another place. The "fog" that goes along with SLE, fever, weakness made it easier to go into a sort of meditative status. I think this is common for a lot of people who are going through some sort of trauma, whether it is physical, emotional, mental or spiritual in nature. To help ease your mind, I have always thought it was harder to watch someone else in pain than to experience it myself. It was difficult for me to watch the frustration of my family and friends when they were not able to effectively help me. The spirit and mind take over when the body is in crisis, allowing us some respite from our misery, and most likely, your Mother is finding relief from her symptoms in just such a way. While you are going through such a hard time right now, please be kind to yourself: ask for and accept help from every person you meet, take some time to pamper yourself, eat healthy, exercise and get enough rest. If you get run down, you can't give your best to those you love.

I am thinking of you, and pray that you continue to find the strength to be strong

Kokopelli
01-15-2007, 05:07 PM
Thank you all of the kind words and insightful replies. I appreciate you all sharing with me. It helps me to feel not so alone.

I agree with the care being better when the family is involved. I'm a pain in the butt if needed and I go to see her every Tuesday, Thursday, Saturday and Sunday. More days if she needs anything...and all she has to do is call and I make things happen if she needs it.

I do wish I had someone to share this with - like a sister or brother. I also work full time and between my job, my home, my husband, my mom, and my dogs, I have very little time for myself. I took some today though!!! hee hee hee...my husband had to work and I did NOTHING all day. I watched TNT all day and surfed the internet. I didn't do an darn thing and I finally took a shower about 3:00 this afternoon.

It was nice.

*hugs* to you all. I'm so glad I found this place!

Southernbelle
01-15-2007, 10:00 PM
Kokopelli, good for you!! A little rest never hurt anyone. I do not see how you work full time and do all that you do! :lilangel:

Take care!
Grace

littlered
01-16-2007, 09:14 AM
"Aurora"

Dodging the white coats and white halls,
I check my guitar, is it in tune?
Crossing the hall to her room
Where
Sitting alone in her chair
I
Position myself in her singular stare.
I sing for Aurora.
She's not feeling too well today, they say,
"How can they tell? She looks so
Healthy in
Every way?"

And, she
Can't speak a word but I know
She can hear every word that I say!
I
Wish I could speak with my eyes!

Jerking her toes in time:
A cryptic rhythm of hers--or mine?
Sometimes out of the shadows she
She whispers her scattored history
A faint remembrance visits the house
Of the elderly.

And, she
Can't speak a word but I know
She can hear every word that I say!
I
Wish I could speak with my eyes!

2056
Here I sit
No more numbered days,
And I wake to a circle of angels
With their heads down low,
And their mouths,
encircle my soul.

Am I here
In this numbered room?
I awake to a blue-jeaned girl
She's singing her songs and
Trying so hard not to
Cry.

And, she
Can't speak a word but I know
She can hear every word that I say!
I
Wish I could speak with my eyes!

Kokopelli
01-16-2007, 02:50 PM
That is really neat. Thank you for sharing it.

garibay3147
11-04-2007, 07:18 PM
First of all I am really sorry about your mom....my mom too was also diagnosed with SLE...she is 36 and i am 17.......like you it didn't seem to bad at first but it has been getting worse lately....since i was a little girl i have always had to care for her and to see her first hand get weaker and weaker hurts alot.....what is scary the most is we don't get much help from anyone and we don't know much about it because her doctors don't have much information on it......i wish i knew what i could do to help her.....it's just extremely hard with a house of 7 and me being the oldest.....i know somewhat of what your going through and i'm here to talk if you need to......and i could use some advice too