Everything you ever owned, everything you ever thought you would get, and things you never even thought about. It's a long, slow slide into darkness, with no hope of stopping.
A beautiful statue, left out in the elements, worn away, until it’s only the shape of a person but not really the person that once was. Alzheimer's ...it wears away the edges that made my Mom who she was, one who lived for her kids, her animals, and her rosebushes, and turned her into a person with a sometimes confused and sometimes fearful stare.
I often wonder what she is thinking about when she is staring off into space. It is not a blank or empty stare, it is a stare that is so full it makes me look up to just be sure I cannot see anything too. But as always all I see is a blank wall. I ask her sometimes, "What do you see?" or "What are you thinking?" and sometimes she will look at me so intently, it sometimes seems like she is trying to force whatever she is thinking into my brain. Other times it is as if she is saying that as much as she would like to tell me, she cannot. Maybe she is doing her personal business with God and so it is confidential.
Anyway, even though Alzheimer's is what it is I do feel like Mom is so much better then she was a couple of months ago. I don't know why! I have been researching her medication and so consequently decreasing some and eliminating some which may be helping. I do notify the Dr. with each change, he is very tolerant of me researching what works.
Or maybe it is that she not only feels at home, I often think she believes this is her home and we are just hanging out for awhile. There is an air about her that is hard to explain but even the dogs respond to her sometimes as if she is the pack leader. It is a regalness that is my Mom that she always had in the Roaring Springs house. I think it is that recliner ... it is the best seat in the house, it is the hub and she knows it is hers ... she has the power!
You may not understand my WORDS but if you look into my EYES you can listen with your HEART!
Sunday, September 25, 2011
Thursday, September 22, 2011
So stinkin' cute!
My Mom is so stinkin' cute! When I first started being my Mom's person almost 2 years ago I looked forward to the day when she knew I was her person and I do think it is here for sure. I have felt it for a long time but now it is different because I know that she knows it too.
Our relationship with me as her person started with the look that said ...
I will be polite but do not start acting like we really know each other.
And then it goes like this ...
Ok, you look familiar and best I can remember you were nice enough last time I saw you.
We advance to this ...
I am having issues, you may be my last hope!
Then finally ...
Oh there you are, all is right in my world!
There is something about the peace that comes over her face when I come into view that is ahhh-mazing! There is just no way I can feel frustrated with her for anything when I see that look! (And as we know she can be a toot sometimes) I am still not positive she remembers from time to time that I am her daughter but that is ok!
I do have a hard time when she gets into the chattering a lot! MOST of the time, as long as she is using her inside voice, I am okay with it, because I think she is talking in her own way. But sometimes it goes on and on and on, thank goodness not often though. Most of the time it starts in her sleep as if she is having a dream!
Mom is doing pretty well overall. We have conversations ... granted all she can give are one word, maybe two word, responses. But she totally follows what is being talked about. She has opinions, she enjoys the dogs but she does not hesitate to fuss at them when they get rowdy. Or tonight when I was telling her I would get her medicine and then we would get ready for bed. I wait for a response, I like to keep her participating in the conversations. OK? I said, silence ... OK? silence ... I am going to get your pudding and then we will go to bed, OK? Finally she said with sarcasm, OOOOOOOKAAAAAY! Some things never change right? Sometimes I have doubts if Mom even has Alzheimer's and her aphasia is being mistaken as ALZ. Or maybe it is because usually she is only in her room at night, the rest of the time she is up and about with us. Maybe that is keeping her from zoning out. It is so hard to tell! If she could talk I think her diagnosis would be different.
Our relationship with me as her person started with the look that said ...
I will be polite but do not start acting like we really know each other.
And then it goes like this ...
Ok, you look familiar and best I can remember you were nice enough last time I saw you.
We advance to this ...
I am having issues, you may be my last hope!
Then finally ...
Oh there you are, all is right in my world!
There is something about the peace that comes over her face when I come into view that is ahhh-mazing! There is just no way I can feel frustrated with her for anything when I see that look! (And as we know she can be a toot sometimes) I am still not positive she remembers from time to time that I am her daughter but that is ok!
I do have a hard time when she gets into the chattering a lot! MOST of the time, as long as she is using her inside voice, I am okay with it, because I think she is talking in her own way. But sometimes it goes on and on and on, thank goodness not often though. Most of the time it starts in her sleep as if she is having a dream!
Mom is doing pretty well overall. We have conversations ... granted all she can give are one word, maybe two word, responses. But she totally follows what is being talked about. She has opinions, she enjoys the dogs but she does not hesitate to fuss at them when they get rowdy. Or tonight when I was telling her I would get her medicine and then we would get ready for bed. I wait for a response, I like to keep her participating in the conversations. OK? I said, silence ... OK? silence ... I am going to get your pudding and then we will go to bed, OK? Finally she said with sarcasm, OOOOOOOKAAAAAY! Some things never change right? Sometimes I have doubts if Mom even has Alzheimer's and her aphasia is being mistaken as ALZ. Or maybe it is because usually she is only in her room at night, the rest of the time she is up and about with us. Maybe that is keeping her from zoning out. It is so hard to tell! If she could talk I think her diagnosis would be different.
Saturday, September 17, 2011
Birthday Party weekend!
We had a good weekend celebrating Louis and Jennifer's birthdays. Megan, John, Jennifer, Allison, Matthew, Braeden, Lexy, and Carissa were all here. Mom really seemed to enjoy the company and probably most of all some different faces.
Mom is on Hospice care now but that does not mean she is at deaths door by any means. Hospice is a higher level of care and attention than Home Health but with Hospice we let God's will be done without intervening except what is needed to make sure she is comfortable and not in pain. The philosophy of it is really not any different than what I was working from but being on Hospice care gets her an Aide out here 3x a week and a Nurse 2x a week. On Home Health she does not get near that much attention. They say that often times on Hospice, patients do better and live longer because they are not constantly poked and prodded! Plus when the time comes for Mom to complete this journey I am not required to call an ambulance to come get her, take her to the hospital where she will sit until ... On hospice I will call the RN who will come right out and Mom will be able to complete her journey and start a new one in her room with her stuff and her family close. How much nicer is that for her. When the Nurse was telling me about how Hospice works and to let her know if I was interested I said, "Ya know I feel like I must have missed something because I cannot see why I would not want this for Mom, why would I have to think about it?" And so it is ...
Mom sure has ups and downs ... sometimes she goes for days and will not eat or drink, barely wakes up, until I get to where I am thinking the end is imminent. I get all misty eyed when I am around her, she looks at me with a furrowed brow as if to say "Don't be sad, it is okay". And just about the time I start to consider calling everyone I wake her up the next morning and she is bright eyed and bushy tailed, hungry, cannot wait to get up, talking as much as she is capable of, smiling ... oh yes smiling as if to say, "Ha, I fooled ya, I am just fine!". And the cycle starts again, she will be wonderful for 2 or 3 days, so much so that I want to think SHE IS HEALED ... she is the first one in history to have reversed this terrible disease! And then once again she deteriorates and the strange behavior begins again like it did tonight! I am getting her ready for bed and she is yelling and fussing and so I start to sing. As usual that calms her but tonight only for a while. In a bit she is slapping the air in my direction saying "Shut-up, Shut-up, Shut-up!" That was so different for her. First of all when we were kids shut-up was as bad as any cuss word and second my singing always calms her. Hmmm maybe I was just really off key tonight! ; ) So we will see what tomorrow brings!
This is Mom dressed up for our company!
Mom is on Hospice care now but that does not mean she is at deaths door by any means. Hospice is a higher level of care and attention than Home Health but with Hospice we let God's will be done without intervening except what is needed to make sure she is comfortable and not in pain. The philosophy of it is really not any different than what I was working from but being on Hospice care gets her an Aide out here 3x a week and a Nurse 2x a week. On Home Health she does not get near that much attention. They say that often times on Hospice, patients do better and live longer because they are not constantly poked and prodded! Plus when the time comes for Mom to complete this journey I am not required to call an ambulance to come get her, take her to the hospital where she will sit until ... On hospice I will call the RN who will come right out and Mom will be able to complete her journey and start a new one in her room with her stuff and her family close. How much nicer is that for her. When the Nurse was telling me about how Hospice works and to let her know if I was interested I said, "Ya know I feel like I must have missed something because I cannot see why I would not want this for Mom, why would I have to think about it?" And so it is ...
Mom sure has ups and downs ... sometimes she goes for days and will not eat or drink, barely wakes up, until I get to where I am thinking the end is imminent. I get all misty eyed when I am around her, she looks at me with a furrowed brow as if to say "Don't be sad, it is okay". And just about the time I start to consider calling everyone I wake her up the next morning and she is bright eyed and bushy tailed, hungry, cannot wait to get up, talking as much as she is capable of, smiling ... oh yes smiling as if to say, "Ha, I fooled ya, I am just fine!". And the cycle starts again, she will be wonderful for 2 or 3 days, so much so that I want to think SHE IS HEALED ... she is the first one in history to have reversed this terrible disease! And then once again she deteriorates and the strange behavior begins again like it did tonight! I am getting her ready for bed and she is yelling and fussing and so I start to sing. As usual that calms her but tonight only for a while. In a bit she is slapping the air in my direction saying "Shut-up, Shut-up, Shut-up!" That was so different for her. First of all when we were kids shut-up was as bad as any cuss word and second my singing always calms her. Hmmm maybe I was just really off key tonight! ; ) So we will see what tomorrow brings!
This is Mom dressed up for our company!
What insightful questions from such young boys!
My Grandsons Matthew and Braeden got here last night. They are 9 and 8 and when Mom has her Sundowner's chattering and yelling it makes them a little uncomfortable but they are getting much more used to it. So much so that they are asking questions and I like that, it shows so much maturity that such young boys would care to ask. When Mom started Matthew came in and said "Is she singing?". I said No. I am so disappointed that I did not say yes because I think it kind of scares Matthew and I think what he was trying to do is make it okay by confirming it was just her singing, very much out of tune but singing nonetheless. I mean Matthew is used to hearing singing out of tune from all of us! I did explain that what happens sometimes is when people get old they get a disease that affects their brain and so even though they can think something they cannot get it from their brain to their mouth and so it comes out like that. Braeden, without missing a beat said, "Does SHE know what she is saying?" I said yes. What insightful questions I thought! Maybe when she does it again I will say ya know Matthew, I think you are right, I think she is singing!
Friday, September 16, 2011
"Well why are you yelling?"
I hear Mom yelling and chattering and it has to be pretty loud for me to hear her in the office! So I go in there and get right up to her face and say "Mom, what is wrong?". She stops and says "Nothing". I say, "Well why are you yelling?". And in the most innocent and serious tone she says, "I'm not". I just buried my head in her chest laughing! She is so stinking cute sometimes!
“She doesn’t know me, but I still know who she is.”
It was a busy morning, approximately 8:30 am, when an elderly gentleman, in his 80′s, arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9:00 am. I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him.
I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.
While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor’s appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease.
As we talked, and I finished dressing his wound, I asked if she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.
I was surprised, and asked him. “And you still go every morning, even though she doesn’t know who you are?”
He smiled as he patted my hand and said. “She doesn’t know me, but I still know who she is.” Author Unknown
I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.
While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor’s appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease.
As we talked, and I finished dressing his wound, I asked if she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.
I was surprised, and asked him. “And you still go every morning, even though she doesn’t know who you are?”
He smiled as he patted my hand and said. “She doesn’t know me, but I still know who she is.” Author Unknown
Tuesday, September 13, 2011
I remember you with my heart ...
Jennifer and Mom
I wonder who decided that a person's worth was measured by what they do and not who they are. Maybe nobody did, maybe this is just some rule we impose on ourselves. Or maybe this is something I have imposed on myself. Most of the time I am ruled by my heart and when I do that I feel like taking care of my Mom is a valuable thing. But then there are times, not often but none the less overwhelming, when I let my head do the ruling. It is those times that I put too much value on what a person does out there ... in the world, in the workplace, instead of what you do in the home and with your family. And so then my self esteem plummets and I do the ugly cry and I tell Louis I feel like I do not have anything to contribute to the conversation because all I do is change diapers all day. And he says I do not think that, we have conversations, you stay connected to the news and you read, we have things to talk about. He is right I know ...
One thing that I do notice is how caught up I get in Mom and the little things she does and says, the things she says with her eyes. But those things are hard to share with people that do not have a similar experience. When we talk about things in the workplace pretty much anyone can relate at some level, have something to compare it to. I compare talking about my Mom to talking about workplace issues with someone who has never worked outside the home, or talking about your new baby with someone who has never had kids.
If you are around my Mom for less than 72 hours or you have never cared for someone with Alzheimers it will be pretty hard for you to buy into my stories about her. It will be easy for you to think, "There is no way, I have been around Grace, there is nothing there, she is out of it, she does not have the cognitive ability to understand that." I can totally understand my brother's frustration now when he took care of my Mom. He had these experiences with her and he wanted so badly for family to believe that there was a lot more to Mom than meets the eyes. I was guilty of sometimes feeling like he wanted so badly for that to be the case that he imagined her having moments of such clarity and humor. I have learned that he was right because she still has those moments, there is so much behind those eyes if you look deep enough. And she is much farther along in the disease now than she was then.
I posted a poem earlier in the blog and here it is again. I love it because it so clearly says what I believe is in Mom's eyes when family comes around. I have always told people that she may not remember who you are but I think she remembers that you represent a good feeling and a good memory. I was just not talented enough to put it in a poem.
I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are,
or who I am.
Maybe I grew up with you.
Maybe we were family together.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the feelings -
we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave -
my mind will not remember -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.
Author Unknown
Monday, September 12, 2011
Love Letter August 9, 1944 - Before E-Mail there was V-Mail
Laverne: Dad always spoke Polish when talking to his ma on the telephone.
Me: In this letter Dad talks about V-Mail being so informal as compared to the handwritten letter. He was wise beyond his time, he knew how detrimental it could be to become reliant on V-Mail, an earlier form of E-Mail.
V-mail, short for Victory Mail, is a hybrid mail process used during the Second World War in America as the primary and secure method to correspond with soldiers stationed abroad. To reduce the logistics of transferring an original letter across the military postal system, a V-mail letter would be censored, copied to film, and printed back to paper upon arrival at its destination.
The picture above is of my Grandmother Zabielski. My Dad was always so respectful of his Ma. They say you can tell a lot about a man by the way he treats his mother. I remember when Grandmother got old and senile (that is what they called it back then) and she came to live with Mom and Dad. Mom took care of her because Dad worked. That played an important part in my decision to have Mom come here to live. I felt like she earned some pennies from Heaven for taking care of Grandmother and so she deserved a chance to cash them in.
9 August 1944
India
Dearest Grace,
I received your letter dated July 16 and I sure did find it a very welcome and interesting letter.
I started to write you a letter last night on V-mail, but it seemed to me very informal to write in V-mail. In the second place, half way finished with your letter I ran out of ink so I postponed it till today.
They had some Sunken Gardens up at San Angelo and I really thought they were beautiful. I know what you mean when you describe those at San Antonio.
I know that Lt’s are wolfs also, and now that incident that you mentioned convinces me that I was right.
Last night after work I went to see our Squadron play the M.P.’s baseball team. We won the game 2 to 1. After that I started to write you a letter but could not finish it. I’m sorry. After that I went to a show. Had a little trouble cause they announced all men in overalls would have to leave the show and so all the men in overalls left and the guys who were dressed in Khakis left also. The guys in khaki uniforms did not go back until they allowed the guys in overalls in. They finally let every one in.
They guys were sure mad cause they didn’t mind dressing up in their dress clothes in public cause then you are living up to the standards of our Army, but when they made us dress in dress clothes in the field where no public is allowed sure made the men angry.
Nothing more to say only that I am well and healthy and I sure do miss you. I wish that you were here so I could hug and squeeze you till you say stop. Honey, do you miss me as much as I miss you?
How is every one at home? Well and happy, I hope. Did you hear from W.R. lately?
So, honey, I’ll close with love and yours, always,
Ray
P.S. Enclosed is a clipping on why I am now overseas.
Me: In this letter Dad talks about V-Mail being so informal as compared to the handwritten letter. He was wise beyond his time, he knew how detrimental it could be to become reliant on V-Mail, an earlier form of E-Mail.
V-mail, short for Victory Mail, is a hybrid mail process used during the Second World War in America as the primary and secure method to correspond with soldiers stationed abroad. To reduce the logistics of transferring an original letter across the military postal system, a V-mail letter would be censored, copied to film, and printed back to paper upon arrival at its destination.
The picture above is of my Grandmother Zabielski. My Dad was always so respectful of his Ma. They say you can tell a lot about a man by the way he treats his mother. I remember when Grandmother got old and senile (that is what they called it back then) and she came to live with Mom and Dad. Mom took care of her because Dad worked. That played an important part in my decision to have Mom come here to live. I felt like she earned some pennies from Heaven for taking care of Grandmother and so she deserved a chance to cash them in.
9 August 1944
India
Dearest Grace,
I received your letter dated July 16 and I sure did find it a very welcome and interesting letter.
I started to write you a letter last night on V-mail, but it seemed to me very informal to write in V-mail. In the second place, half way finished with your letter I ran out of ink so I postponed it till today.
They had some Sunken Gardens up at San Angelo and I really thought they were beautiful. I know what you mean when you describe those at San Antonio.
I know that Lt’s are wolfs also, and now that incident that you mentioned convinces me that I was right.
Last night after work I went to see our Squadron play the M.P.’s baseball team. We won the game 2 to 1. After that I started to write you a letter but could not finish it. I’m sorry. After that I went to a show. Had a little trouble cause they announced all men in overalls would have to leave the show and so all the men in overalls left and the guys who were dressed in Khakis left also. The guys in khaki uniforms did not go back until they allowed the guys in overalls in. They finally let every one in.
They guys were sure mad cause they didn’t mind dressing up in their dress clothes in public cause then you are living up to the standards of our Army, but when they made us dress in dress clothes in the field where no public is allowed sure made the men angry.
Nothing more to say only that I am well and healthy and I sure do miss you. I wish that you were here so I could hug and squeeze you till you say stop. Honey, do you miss me as much as I miss you?
How is every one at home? Well and happy, I hope. Did you hear from W.R. lately?
So, honey, I’ll close with love and yours, always,
Ray
P.S. Enclosed is a clipping on why I am now overseas.
Friday, September 9, 2011
Times like these ...
Times like this make it all worth it!
It does not happen often that Mom is affectionate but when she is she reaches out her hand. Life with Mom is a roller coaster of emotions. Here is how today went and you will see what I mean. This is a pretty typical day.
This morning I was in tears because once in awhile I get overwhelmed with the feeling that I do not take very good care of Mom. I know I am good with her mentally and emotionally but physically it seems to be one thing after another. Bunni convinced me that moving her here was still the best thing for her ... then we laughed about whatever it is we laugh at (only we think we are funny) and then I moved on to the business at hand.
Mom was not in a great mood this AM, actually she was a handful! She was watching her movie and yelling at it ... I kept telling her, "It is okay, it is just a movie." I think she was upset because Gus was talking to another woman! Finally I said, "Mom I think you need to watch some church!" Louis busted out laughing from the office! I turned it to my pre-recorded Sunday Mass and the first thing that is said is "... acknowledge your sins and ask forgiveness ... " I laughed and said "See Mom!" She totally calmed and tuned in to that Mass. I know those familiar prayers were a comfort to her.
Then it was shower time, it went as well as can be expected so when we were finished I asked her, "Mom are you mad at me?" And she loudly, without hesitation said, "YES!"
Needless to say, WE were now both ready for a nap! When she woke up she had the sweetest smile on her face and when I asked her if she was ready to get up she so sweetly said, "Yea!" Hmmmm ... I wonder ... where is that woman I put in this bed? She is no where to be found.
We sit down to dinner and at one point she starts trying to get involved in the conversation, she stammers, "uh uh uh, ah ah ah, one one one, two two two, ah ah ah", and then with such pain in her eyes she manages to say, "I I I caaaaant s s s ay i i t. And I just want to cry, I say "I know Mom, I hate that aphasia, because I know you have so much you want to say". I can only imagine the wonderful conversations we could have, it breaks my heart. I talk to her but half the time she looks at me like she is thinking, "You are such a dork", or "You sure do talk a lot". ; )
Then we go for our walk and she is responsive and enthusiastic about it. She loves being outside so after our walk we always sit on the porch and watch the sunset. This is when she reaches out her hand.
Finally we come in and she sits in the big chair while I blog. Periodically she has a sundowner spell where I have to say, "Mom! Use your inside voice!" LOL!
I cannot underestimate how much taking care of an elderly parent with alzheimers is like taking care of a baby. Think of everything you do or did with a baby and that is what I do with Mom right down to tip-toeing into her room when she is asleep, where I have a small lamp on, and I check on her. And when she is so still, just to be sure, I watch for the rise and fall of her chest to make sure she is still breathing, just like I did with my daughters.
I frequent a page on Facebook for folks that take care of their parents. So many of them take their parents anger and ugliness personal. Ya know I have never done that because I know my Mom, she has never been angry at her kids, she was and I believe still is, so wonderful at unconditional love. That does not mean I do not have to speak up at times. I do sometimes say, "whatever Mom, you do not get to treat me like that", and I leave the room. I feel so sure she understands and feels remorse for it because there has not ever been a time that she has not been sweet and cooperative when I return.
And then it is bedtime, time to rest up, she says, so I can toy with you again tomorrow! Well no, she does not really say that but she is probably thinking it!
It does not happen often that Mom is affectionate but when she is she reaches out her hand. Life with Mom is a roller coaster of emotions. Here is how today went and you will see what I mean. This is a pretty typical day.
This morning I was in tears because once in awhile I get overwhelmed with the feeling that I do not take very good care of Mom. I know I am good with her mentally and emotionally but physically it seems to be one thing after another. Bunni convinced me that moving her here was still the best thing for her ... then we laughed about whatever it is we laugh at (only we think we are funny) and then I moved on to the business at hand.
Mom was not in a great mood this AM, actually she was a handful! She was watching her movie and yelling at it ... I kept telling her, "It is okay, it is just a movie." I think she was upset because Gus was talking to another woman! Finally I said, "Mom I think you need to watch some church!" Louis busted out laughing from the office! I turned it to my pre-recorded Sunday Mass and the first thing that is said is "... acknowledge your sins and ask forgiveness ... " I laughed and said "See Mom!" She totally calmed and tuned in to that Mass. I know those familiar prayers were a comfort to her.
Then it was shower time, it went as well as can be expected so when we were finished I asked her, "Mom are you mad at me?" And she loudly, without hesitation said, "YES!"
Needless to say, WE were now both ready for a nap! When she woke up she had the sweetest smile on her face and when I asked her if she was ready to get up she so sweetly said, "Yea!" Hmmmm ... I wonder ... where is that woman I put in this bed? She is no where to be found.
We sit down to dinner and at one point she starts trying to get involved in the conversation, she stammers, "uh uh uh, ah ah ah, one one one, two two two, ah ah ah", and then with such pain in her eyes she manages to say, "I I I caaaaant s s s ay i i t. And I just want to cry, I say "I know Mom, I hate that aphasia, because I know you have so much you want to say". I can only imagine the wonderful conversations we could have, it breaks my heart. I talk to her but half the time she looks at me like she is thinking, "You are such a dork", or "You sure do talk a lot". ; )
Then we go for our walk and she is responsive and enthusiastic about it. She loves being outside so after our walk we always sit on the porch and watch the sunset. This is when she reaches out her hand.
Finally we come in and she sits in the big chair while I blog. Periodically she has a sundowner spell where I have to say, "Mom! Use your inside voice!" LOL!
I cannot underestimate how much taking care of an elderly parent with alzheimers is like taking care of a baby. Think of everything you do or did with a baby and that is what I do with Mom right down to tip-toeing into her room when she is asleep, where I have a small lamp on, and I check on her. And when she is so still, just to be sure, I watch for the rise and fall of her chest to make sure she is still breathing, just like I did with my daughters.
I frequent a page on Facebook for folks that take care of their parents. So many of them take their parents anger and ugliness personal. Ya know I have never done that because I know my Mom, she has never been angry at her kids, she was and I believe still is, so wonderful at unconditional love. That does not mean I do not have to speak up at times. I do sometimes say, "whatever Mom, you do not get to treat me like that", and I leave the room. I feel so sure she understands and feels remorse for it because there has not ever been a time that she has not been sweet and cooperative when I return.
And then it is bedtime, time to rest up, she says, so I can toy with you again tomorrow! Well no, she does not really say that but she is probably thinking it!
Thursday, September 8, 2011
Same old, Same old ...
Well I have not written much lately because nothing has changed much, we are falling into a pretty good routine. The weather has been great so we have been able to go outside more and even take a walk up the road and back. Mom loves going outside, she does not want to come in.
She loves watching Lonesome Dove, it calms her almost as much as my singing does! I think she has a crush on Gus! The bad part about that is, while she is watching that I should do other things but I love that movie so I end up having a hard time working anywhere but the living room where the TV just so happens to be. The living room stays very clean though! If you have not seen it you must see it ... and you need to watch it at least twice because the second time you pick up on so much that you missed the first time.
I have been letting her call the shots more in regards to her schedule. I let her sleep later in the AM because she seems to be easier to work with than when she gets up early. To all my siblings, if we thought Mom was a morning person she was faking it! She is not a morning person!! Also, I am not stressing so much if she does not take her medicine right on time. Eventually she will work with me!
Well she is watching her movie so back to work ... let me see is there anything that needs to be done here in the living room ... hmmmmmm!
She loves watching Lonesome Dove, it calms her almost as much as my singing does! I think she has a crush on Gus! The bad part about that is, while she is watching that I should do other things but I love that movie so I end up having a hard time working anywhere but the living room where the TV just so happens to be. The living room stays very clean though! If you have not seen it you must see it ... and you need to watch it at least twice because the second time you pick up on so much that you missed the first time.
I have been letting her call the shots more in regards to her schedule. I let her sleep later in the AM because she seems to be easier to work with than when she gets up early. To all my siblings, if we thought Mom was a morning person she was faking it! She is not a morning person!! Also, I am not stressing so much if she does not take her medicine right on time. Eventually she will work with me!
Well she is watching her movie so back to work ... let me see is there anything that needs to be done here in the living room ... hmmmmmm!
Tuesday, September 6, 2011
What Alzheimers does ...
This poem totally explains what I believe Mom feels.
I remember you with my heart.
My mind can't say your name.
I can’t recall where I knew you,
or who you are,
or who I am.
Maybe I grew up with you.
Maybe we were family together.
Did we walk together yesterday?
There’s something wrong -
with my memory.
But I do know you.
I know I know you.
I know I love you.
I know how you made me feel.
I remember the feelings -
we had together.
My heart remembers.
It cries out in loneliness for you.
For the feelings you give me now.
Today, I’m happy that you have come.
When you leave -
my mind will not remember -
that you were here.
But my heart still remembers.
Remembers the feeling of warmth
and love returned.
Remembers that I am less lonely -
and happier today -
because you have come.
Please, please don’t forget me.
Please don’t stay away just
because of how my mind works.
I can still feel you.
I can still remember you with my heart.
A Memory of the heart is really -
the most important memory of all.
(Original Author Unknown – named, revised and edited by Stan Berg 5/6/2008.)
Saturday, September 3, 2011
I have fallen and cannot get up ...
What in the heck was I thinking? First of all why did I think it was a good idea to put Mom in the recliner in the morning? And then why did I think that I could get Mom from the recliner to the wheelchair? I have only done that one time and it was very early in the day and I had not had that "healthy" fruit bar laden with sugar, and I had not had that square of "healthy" dark chocolate that also has sugar in it, all of which do wonders at zapping my strength!!
Well here is what happened, when Louis got home I had the great idea of letting Mom sit in the recliner because I do love having her out here with me even though I KNOW that this disease thrives on you not sticking to the schedule. So of course, Mom wakes up unhappy and needing to be changed. And I can't wait til Louis gets up because of the fear of bedsores so here I go. I put on my back belt, lean over and grab Mom's gait belt, ignoring my legs that are screaming, "I can't do it ... too much sugar!!" One, Two ... One ... okay lets try it again .. One, Two, Three, swing, and we hover somewhere with half her butt on the chair and half on the wheelchair. Since the wheelchair is higher than the chair (not an ideal situation for a transfer which I also know) I resign myself to lowering her to the floor. And then I have to wake Louis up to help. And as always he was wonderful, saying, "I will be right there!". When he got there you could see the tenseness in her face melt away as she looked at him, probably thinking, thank goodness someone that knows what they are doing!! I love you Louis, I could not do this without you!!
Friday, September 2, 2011
Money cannot buy what love can
Mom's Home Health Team often compliments me on how well I take care of Mom. But like Laverne said she does in a post with one of Dad's letters I just figured they are just being nice ... as I did today! Joy, the nurse, was here and she said a couple of times what a great job I do with Mom whether it is singing to her to calm her down or doing all that I do to keep bedsores at bay. I said, "Do you really think so? Because I always wonder if I do enough" She said, "Oh no you do great. Did you know that Christopher Reeve died from a bed sore and he had all kinds of private nurses, doctors and the best medical equipment available. And you do it all by yourself, you are so good with her."
I have had Home Health tell me this on many other occasions and I have not posted it because I am not comfortable patting myself on the back. But her mention of Christopher Reeve made me think. Money can buy you a lot but it cannot buy you the same care that love can.
Mom is in bed right now and she starts fussing. Usually she will go back to sleep pretty quick but not this time so I went in there to try to figure out what she wants. I say, "Mom do you want some water? Some cottage cheese? Some yogurt?" Nothing, just a blank stare, I wonder if maybe she cannot decide or maybe she is not really listening. Then I say, "or do you just want to lay there and stare at me?" She busts into a pretty good laugh for her. Then she decided on yogurt so I got some and went back in there ... SOUND ASLEEP! I would bet that in this house more food money goes to the food she does not eat than goes to what Louis and I eat put together.
I have had Home Health tell me this on many other occasions and I have not posted it because I am not comfortable patting myself on the back. But her mention of Christopher Reeve made me think. Money can buy you a lot but it cannot buy you the same care that love can.
Mom is in bed right now and she starts fussing. Usually she will go back to sleep pretty quick but not this time so I went in there to try to figure out what she wants. I say, "Mom do you want some water? Some cottage cheese? Some yogurt?" Nothing, just a blank stare, I wonder if maybe she cannot decide or maybe she is not really listening. Then I say, "or do you just want to lay there and stare at me?" She busts into a pretty good laugh for her. Then she decided on yogurt so I got some and went back in there ... SOUND ASLEEP! I would bet that in this house more food money goes to the food she does not eat than goes to what Louis and I eat put together.
Do not put off til tomorrow ...
I am part of a Facebook group and there was a discussion about whether to think about the future or to not in regards to ALZ. I do not think there is one right answer to that because it does depend on your situation. For me though with my Mom I am very into her, where she is at, every day because I do know what is coming and so I know there will not be another chance. When my Dad started getting sick I knew nothing about this disease. I just figured where he was at then was the extent of the sickness so like we all do I fell into the, "I will do that later" or "I will visit next weekend instead" or "I will help him with his computer next time I come, I am in a hurry". If I had known then what I know now about the disease I would have known that later he will not want to do what I had planned or that if I wait another week he will not know me anymore or by the time I come back he will have forgotten how to use the computer so would not need me to help him. So though I do not dwell on the future with Mom I do keep it in the forefront of my decisions. I am fully aware what is coming ... thank goodness. I will have memories with my Mom I missed out on with my Dad ... because I did not think about the future when my Dad was sick.
Now this lesson does not apply to just loved ones with ALZ but to all of those you care about. If you think it, say it, if you think it, do it!
Love Letter #2 Aug 3, 1944
Me: In this letter Dad talks about taking care so as to not get malaria. Well he did and was very sick for a while. Up until the day he died, so many years later, he could not give blood because he had had malaria as a young man.
Laverne: Dad is in India in this letter. Sleeping in a tent. The photo is of him still on a ship. Is that a camera in his hand? When we lived In Japan, many years later, I remember taking photos and developing them with Dad in the base photo lab. Is it any wonder that his creative talents, and mom’s with her sewing and quilt making, that many of their children and grandchildren have followed in their foot steps?
3 August 1944
Thursday eve
India
Dearest,
I’ve got the urge to write you, but I just can’t seem to find anything to say. I have so much to talk about yet when I sit down to write you my mind seems to be a total blank.
I haven’t been very busy today, but as soon as I try reading a book or write a letter some body comes in with some work he wants done immediately if not sooner.
I am writing you this letter while on the bed and underneath a mosquito net. It is very stuffy underneath the net, but if I did not sleep under the net I would be subject to the bite of a mosquito and maybe malaria.
I really had a lot of trouble to get to work today. On account of the big rain the other night all routes to our place of work were underwater. When we did land a truck to take us, there was always the chance of it stalling so we would l have to get out and wade through the water. Our truck stalled once today and so I had to get out and walk.
It is getting dark now so I pulled out my flashlight so I could keep on writing to you. We have no electric lithgt in our tents. As I sit here and write this letter there are guys outside reinforcing their tents cause some of the tents fell down the previous night. I’ll wait till mine falls before I reinforce it. Mine looks pretty solid, anyway.
Most all the minor dirty jobs are being done by the Natives. All we have to do is carry out our regular duties and not worry about K.P. etc.
I pay a guy $2 a month to do my laundry. It does not matter how much clothes I give him. The price is always the same. This way I’ll be able to put on a clean suit of clothes on every other day.
I sure am glad in one way that they shipped me over seas. For by shipping me overseas I replaced a fellow that has served overseas for more than 2 years. You should see how happy he was when he found out I was replacing him. And that now he was able to go home again. Now if they send enough guys like me overseas your brother, my brother will be able to come home sooner. Don’t get me wrong. I don’t cherish this idea of being away from you, I miss you so and I so do long to be with you again. I’m only happy that because of replacements like me and some other guys coming here, gives you a chance maybe to see W.R. a lot sooner. (You should be glad you don’t have to put up with me for a couple of years.)
Well babe, I guess I’ll close for tonight. I have no more news and I’m getting tired so I could sleep. I want to sleep so I could dream of you.
With all my love,
Ray
P.S. I do love you. I’m pretty darn sure. Are you? I’m kissing you good night honey. Did you get it?
Love Letter Aug 3, 1944
Me: "Guess I’ll close with oceans of love and a kiss on every wave". I love this line in Dad's letter. What a romantic!
Laverne: Guadacanal Diary, a must see if you truly want to know the thoughts and fears of anticipation that young soldiers felt at they traveled on boats to unknown lands and unknown battles. This photo of Dad on the middle bunk looks as though it came right out of the movie. And the kidding and conversation sounds as though they came right out of his letters.
3, August 1944
Dearest Darling,
Not much news, so I do not know just what to say. There is one thing I want to say and you heard it plenty of times before. “I sure do miss you.”
Today and yesterday have been two pretty cool days. We have had a little rain. About 2 to 3 ft deep in certain spots. Our tent was not washed out, although there were plenty that did.
I’ve been pretty busy yesterday so I was not able to write. I’m sorry.
I wasn’t able to leave camp to go to town. So I haven’t had a picture taken yet. I’ll send you a picture as soon as possible.
I haven’t received any letters from you lately, the last 3 or 4 days I mean, so I just can’t find anything to write. Guess I’ll close with oceans of love and a kiss on every wave.
Love always,
Ray
P.S. Sorry this is only a short note. Will write more as soon as I can.
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