There are so many things in my life I could write about but I keep coming back to the same thing….my grandmother. While I feel I have handled the situation presented to all of us well, on the outside anyway, there are many days I just think about what life has dealt her and it makes me want to cry.
Just recently on Thanksgiving, we had a mini grandma crisis. My mother, aunt and uncle and I spent most of our holiday in the emergency room after receiving a call that my grandmother was not doing well. Every time the phone rings and I hear it’s the nursing home, I automatically fear the worst. My grandmother is almost 90 years old and has been suffering from Alzheimer’s for many years now. There is only one way this story could end, and I always fear this time is it. This is the time we will go to the hospital, and she won’t be coming back.
Turns out she was suffering from the beginnings of double pneumonia as well as severe dehydration, which in itself can be life threatening. While in the ER awaiting the test results, another woman from my grandmother’s nursing home came in to the curtained room next door. I had actually gone to elementary school with two of her granddaughters. Now if you know me, I don’t handle death and sickness and sadness well. As the situation next door was coming to a quite tragic climax, I just stared at the machines that were monitoring my grandmother’s life signs. I watched every flash and heard every beep, anticipating that something would indeed happen. The woman next door was perfectly fine, enjoying some food and wine with her family when catastrophe struck. That could easily happen to us as well. Those distraught relatives being asked about a living will could have been us, and some day will be.
It’s also well known that when elderly people suffer severe illnesses or broken bones or have to undergo surgery, it often brings about a rapid decline. Being aware of all the factors, it was soon becoming quite a stressful situation.
When things turned around and I felt confident she was going to be ok, two nurses came in to do a very thorough exam of her, looking for any other issues, i.e. broken bones (check), bruises (check), or any other wounds (check). It was the first and hopefully last time I saw what a bedsore looked like. My recent calm had turned back to worry. Not only was I fully taking in that fact that my grandmother was suffering from Alzheimer’s, a broken bone, blisters, bruises, dehydration and double pneumonia, but now I realize she has also been living with a very serious sore that she is constantly putting pressure on. How much more can you put on a person? While they were checking her wound, it was the first time in years I saw pain in my grandmother’s eyes. She was in great pain and discomfort and a tear or two began to form in her eyes. Since she has been living in assisted living homes and nursing homes, I haven’t seen this kind of pain in her eyes. It was something that I didn’t want to see, but made me realize maybe she is aware of ALL the horrible things that are going on with her. Maybe she is suffering from all kinds of pain and we just have no way of knowing.
Recent visits have been harder. With her dehydration situation, her decline may become more rapid. We try our best every week to get liquid in her system, but short of forcing the drinks down her throat (which I feel like I sometimes do), there is nothing we can do.
Last week I saw fear in her face. Another thing I haven’t seen in quite a while. It was as if she was fully aware of everything and knew she couldn’t communicate any of her fears, pains, or feelings. You, yourself, begin to feel not only helpless, but guilty. Guilty as hell that you have put your loved one in a home. Guilty as hell that you don’t know what they want or need. And guilty as hell that you can’t do one goddamn thing about it.
I feel so envious of the dementia patients I see that live in a dream world and have absolutely no idea what’s going on. I would rather my grandmother think anything about her life other than the reality, even if that meant being completely verbal but not recognizing me.
I don’t remember how her one brother died but the other suffered an unimaginable decline as well with ALS. It was the reverse of her situation. While she (in the beginning) had a healthy body but was slowly losing her mind, he had a sharp mind with a body that became useless to him. I had to watch her sister slowly decline as well for reasons I still don’t understand. It was so incredibly hard to watch such an independent and strong woman not even be able to pull the covers over herself. I don’t understand why life is so cruel sometimes. Then again, is it worse to lose someone without having had the chance to say goodbye?
On top of all this, I feel guilt, well really regret, that I never spoke to any of my grandparents before they died. By that I mean, never really sat down to talk and ask them about their lives before I came along. How they met. What it was like to be a professional dancer. How life was with the war and the depression. What was your wedding day like? How did you feel when you became a mother or a father? That is something I feel that I lost out on greatly. Our grandparents are filled with so much knowledge and fascinating stories that I am sure given the opportunity they would love to share and reminisce. If anyone reading this still has a grandmother or grandfather alive, I urge you to just talk to them. Ask them questions. They won’t be around forever and you will truly regret not getting to know who they really were. I know I do.
None of my grandparents got the chance to see me grow as an adult. None of them will be with me at my wedding. None of them will be there when I become a mother. I take comfort in the fact that they will at least be there in spirit with me. Hopefully they are proud of the life I have made for myself so far.
Showing posts with label Alzheimer's. grandmother. Show all posts
Showing posts with label Alzheimer's. grandmother. Show all posts
Friday, January 29, 2010
Monday, June 15, 2009
Something small always seems to happen right when you need it.
Following up on the previous entry about my grandmother and her struggle with Alzheimer’s, the struggle continues, and every visit is a unique experience. There are some weeks that it seems all pieces of the woman she was are gone. Other weeks, she is talking up a storm. And while the words that are coming out may not make much sense, she is communicating, making eye contact, reaching out. And still other weeks, she can somewhat carry on a conversation; a very short, simple conversation, but a conversation none-the-less.
When you enter her room on any given week, you never know which version of the person you love you are going to get. A few months back, there happened to be a not so good day for her that I unfortunately had to witness. It was like her mind was set to pause. I couldn’t get her to look at me or say “I love you”. Nothing. Now, generally I can handle the Alzheimer’s and the nursing home atmosphere like a pro, but that week was different. It’s not often you look into her eyes and see nothing. The incontrollable emotional mess that I am, I started to cry. I usually try to hide any negative emotions from her but on that day I didn’t think she would really even notice. She hadn’t even seemed to notice my presence up to that point at all. To my surprise, as a silent tear ran down my cheek, she looked right at me, and in a complete and coherent sentence, she told me, “It will be ok”. I have no idea where that came from, but it came right at a time when I needed it the most. It may not seem like anything much, but it meant the world to me. At a moment that I feared my grandmother was slipping away (as I know she will someday), she came through for me. She provided the love and support that she has given me countless times in the past.
Now this past weekend was a whole different story. In the beginning she was a little distant, not talking too much and I was kind of getting that look like, “I have no idea who you are.” “Would you shut up and stop talking.” Which honestly, I get quite often. Well, the second half of that anyway. Not really what you want to see from your flesh and blood. But as I continued to try and communicate with her, I got a smile…..and then another….and another…and another. Smiles from her are few and far between and I got four of them within a few minutes. It was amazing. I think she was even making herself smile. It was such a wonderful feeling for her of course but for me as well. She really lives such a sad and confusing life since being touched by this horrible disease, so any signs of joy, for whatever reason, are amazing things.
I always had the feeling that things were happening in my life when I needed them the most; often times, seeing something that would maybe make a situation less scary or sad. We had an all women get together a few weeks ago and this very topic came up. It’s incredible how when you talk about it, you realize that other people experience the same thing; in different ways of course, but the need for what we see, and the calm we get from it is the same.
After my aunt passed away last year, I was sitting in the parking lot of my mother’s church. Again, being an emotional mess, I began crying while my mother was working out the details and what to do on the phone. I just cried and cried and stared out the window. It was March so it was still very cold and I hadn’t seen any Robins yet. Robins, the sign of Spring and hope. As I continued to stare out the window, filled with utter sadness, I noticed my first Robin sitting right outside the car. He just stood there for a while and I just stared at him. Eventually he took a few hops away, then a few more, a few more, and then finally flew away never to be seen again. While it was probably just a coincidence that that bird landed next to me at that particular time, it meant something to me. To me, that bird was my aunt telling me good bye. Letting me know she is ok.
After she died, and the family has the horrible task of going through your loved one’s belongings, one of my aunts found a ring that they thought I would like. I’m not really a big jewelry person by any means. Partially because I just can’t be bothered and partly because I can NEVER find a ring that fits my fat fingers. I actually have one of my grandmother’s rings and I have to wear it on my pinky. Even that’s a tight squeeze. So my aunt showed me the ring and of course I was more than happy to have it. Assuming that, like every other ring, it would never in a million years fit my chubby finger, I politely took the ring thinking, ok, it will be a nice reminder that will sit in my jewelry box until it’s passed on to someone else. I can’t remember why I decided to eventually try it on, but I did and it fit perfectly. Perfectly! I wore that ring to her wake and funeral and continue to wear it in her honor and as a beautiful reminder of who I had in my life for almost 30 years.
Keeps your eyes open. You never know what little “miracle” you may see.
When you enter her room on any given week, you never know which version of the person you love you are going to get. A few months back, there happened to be a not so good day for her that I unfortunately had to witness. It was like her mind was set to pause. I couldn’t get her to look at me or say “I love you”. Nothing. Now, generally I can handle the Alzheimer’s and the nursing home atmosphere like a pro, but that week was different. It’s not often you look into her eyes and see nothing. The incontrollable emotional mess that I am, I started to cry. I usually try to hide any negative emotions from her but on that day I didn’t think she would really even notice. She hadn’t even seemed to notice my presence up to that point at all. To my surprise, as a silent tear ran down my cheek, she looked right at me, and in a complete and coherent sentence, she told me, “It will be ok”. I have no idea where that came from, but it came right at a time when I needed it the most. It may not seem like anything much, but it meant the world to me. At a moment that I feared my grandmother was slipping away (as I know she will someday), she came through for me. She provided the love and support that she has given me countless times in the past.
Now this past weekend was a whole different story. In the beginning she was a little distant, not talking too much and I was kind of getting that look like, “I have no idea who you are.” “Would you shut up and stop talking.” Which honestly, I get quite often. Well, the second half of that anyway. Not really what you want to see from your flesh and blood. But as I continued to try and communicate with her, I got a smile…..and then another….and another…and another. Smiles from her are few and far between and I got four of them within a few minutes. It was amazing. I think she was even making herself smile. It was such a wonderful feeling for her of course but for me as well. She really lives such a sad and confusing life since being touched by this horrible disease, so any signs of joy, for whatever reason, are amazing things.
I always had the feeling that things were happening in my life when I needed them the most; often times, seeing something that would maybe make a situation less scary or sad. We had an all women get together a few weeks ago and this very topic came up. It’s incredible how when you talk about it, you realize that other people experience the same thing; in different ways of course, but the need for what we see, and the calm we get from it is the same.
After my aunt passed away last year, I was sitting in the parking lot of my mother’s church. Again, being an emotional mess, I began crying while my mother was working out the details and what to do on the phone. I just cried and cried and stared out the window. It was March so it was still very cold and I hadn’t seen any Robins yet. Robins, the sign of Spring and hope. As I continued to stare out the window, filled with utter sadness, I noticed my first Robin sitting right outside the car. He just stood there for a while and I just stared at him. Eventually he took a few hops away, then a few more, a few more, and then finally flew away never to be seen again. While it was probably just a coincidence that that bird landed next to me at that particular time, it meant something to me. To me, that bird was my aunt telling me good bye. Letting me know she is ok.
After she died, and the family has the horrible task of going through your loved one’s belongings, one of my aunts found a ring that they thought I would like. I’m not really a big jewelry person by any means. Partially because I just can’t be bothered and partly because I can NEVER find a ring that fits my fat fingers. I actually have one of my grandmother’s rings and I have to wear it on my pinky. Even that’s a tight squeeze. So my aunt showed me the ring and of course I was more than happy to have it. Assuming that, like every other ring, it would never in a million years fit my chubby finger, I politely took the ring thinking, ok, it will be a nice reminder that will sit in my jewelry box until it’s passed on to someone else. I can’t remember why I decided to eventually try it on, but I did and it fit perfectly. Perfectly! I wore that ring to her wake and funeral and continue to wear it in her honor and as a beautiful reminder of who I had in my life for almost 30 years.
Keeps your eyes open. You never know what little “miracle” you may see.
Thursday, November 13, 2008
Something is Still in There
Alzheimer’s = A progressive, degenerative disease of the brain that leads to dementia.
Dementia = Deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from a disease or a disorder of the brain, and often accompanied by emotional disturbance and personality changes.
To me, no matter how medical journals or doctors may define these terms, I define them more like fear, change, loss of who you are…… Until my grandmother was diagnosed several years ago I didn’t know much about this disease and I’m still continuing to learn as I go. From step one it has been something I would rather avoid than deal with but then again, who would.
In our case, my grandmother began hallucinating people and situations but yet she was still very much aware of reality and the sad reality of the situation. It wasn’t until she grabbed her keys and took off in her car (which she hadn’t driven in quite a long time) that I realized the severity of the situation. After we thankfully found her on one of the most terrifying nights of my life, she told my uncle that she had the kids in the car and she was taking them somewhere. Well, of course there was no one in the car.
Inevitably she was placed in an Assisted Living facility and then on to a Nursing Home in the Alzheimer’s wing which is anyone’s worst nightmare when getting old. At first, going to visit was an absolute terror for me. You have a bunch of old people, and in some cases not so old people, walking around or wheeling themselves around that are afraid, babbling incoherently, staring off in to space, the list goes on and on. I had no idea how to deal with the situation but I knew with time I would adjust as best one can.
So now it’s several years later and I HAVE learned to adjust and adapt. I go to visit my grandmother every Sunday morning so it’s become a routine. I’ve come to the point where I realize that you just have to accept the situation and use humor to deal with it. There is nothing you can do to make these people better or to stop their behavior which at some points is clearly uncomfortable so all you can do is have a good laugh about it and move on.
Case in point, there was this very chatty lady that used to live where my Grandmother is. She was very mobile so she would inevitably wander to where you were and talk to no one in particular, just talk, talk, talk. We really hadn’t had too much direct contact with her until she came over and started chatting about her pussy cat. My pussy cat this, my pussy cat that…. Then she asked if I wanted to see her pussy cat. I didn’t even have time to think up an answer before I realized that it wasn’t so much a pussy cat as….well….you can fill in the blank. Thankfully we were on our way out so I just ran down the stairs and out the door! You just have to laugh at something like that.
My grandmother is in some sort of babbling phase where she just says the same things over and over and over BUT, there are some instances where I know, or at least I like to believe that she know me and realizes that I am family and that I love her. There have been several instances when I was leaving or even just chatting with her, where she would just look at me and tell me she was proud of me. Maybe I am just believing what I want to believe, but I truly think there is some part of her still in there…..somewhere. It melts my heart when she says. “I love you” which thankfully she says to us quite often. Those three words mean the world to me. It’s all I have left.
Last night, and again, you have to laugh about it because everyone is COMPLETELY FINE, another patient pulled my grandmother out of bed because she thought it was her room and her bed. So we headed down to the hospital to make sure she really was ok and to keep her company. As we were waiting in the hallway and I was standing next to her bed having a “conversation”, she said she was glad that we were chatting and then followed that with, “I’m so very proud of you.” Well, I almost starting to cry right there in the hall. Again, only a few words that make sense out of hours of gibberish but I truly believe at that moment she knew who I was and why I was there.
Several months ago in the nursing home there was a new nurse that we had not seen before. She stopped my family on the way out and asked us if we were Edie’s relatives. We explained who we were and she was asking us question about Mimi back in the day. She basically nailed spot on the kind of person that she was. It was amazing. Some how out of all that haze, she still somehow remains who she was, and this nurse was able to see it.
After I got home last night from the hospital, I pulled out the letters that my grandmother had written to me while I was away at school. I had kept several of them safely tucked away but had never really looked at them since the day I had put them in the drawer. Since she has been ill for so long now, I feel like I had forgotten who she used to be until I re-read those letters. She was an amazing, smart, caring, witty, beautiful woman who thankfully also happened to be my grandmother. It brought tears to my eyes reading those letters and they are a piece of her that I will keep with me forever.
Sunday I will head back to the nursing home for our weekly visit where inevitably my grandmother will babble on incoherently for hours. I’ll do what I always do which is to try to have some what of a conversation with her. That basically consists of me making up things to say or answers to questions you have no idea what they are. I will wave to my “friend” that I see every week sitting at the same table, hide Mimi’s food and my purse from Alfreda who likes to eat everything in sight, smile at the poor woman who repeats over and over, “God help us” and just wait for those three words to make everything ok. “I love you.”
Dementia = Deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from a disease or a disorder of the brain, and often accompanied by emotional disturbance and personality changes.
To me, no matter how medical journals or doctors may define these terms, I define them more like fear, change, loss of who you are…… Until my grandmother was diagnosed several years ago I didn’t know much about this disease and I’m still continuing to learn as I go. From step one it has been something I would rather avoid than deal with but then again, who would.
In our case, my grandmother began hallucinating people and situations but yet she was still very much aware of reality and the sad reality of the situation. It wasn’t until she grabbed her keys and took off in her car (which she hadn’t driven in quite a long time) that I realized the severity of the situation. After we thankfully found her on one of the most terrifying nights of my life, she told my uncle that she had the kids in the car and she was taking them somewhere. Well, of course there was no one in the car.
Inevitably she was placed in an Assisted Living facility and then on to a Nursing Home in the Alzheimer’s wing which is anyone’s worst nightmare when getting old. At first, going to visit was an absolute terror for me. You have a bunch of old people, and in some cases not so old people, walking around or wheeling themselves around that are afraid, babbling incoherently, staring off in to space, the list goes on and on. I had no idea how to deal with the situation but I knew with time I would adjust as best one can.
So now it’s several years later and I HAVE learned to adjust and adapt. I go to visit my grandmother every Sunday morning so it’s become a routine. I’ve come to the point where I realize that you just have to accept the situation and use humor to deal with it. There is nothing you can do to make these people better or to stop their behavior which at some points is clearly uncomfortable so all you can do is have a good laugh about it and move on.
Case in point, there was this very chatty lady that used to live where my Grandmother is. She was very mobile so she would inevitably wander to where you were and talk to no one in particular, just talk, talk, talk. We really hadn’t had too much direct contact with her until she came over and started chatting about her pussy cat. My pussy cat this, my pussy cat that…. Then she asked if I wanted to see her pussy cat. I didn’t even have time to think up an answer before I realized that it wasn’t so much a pussy cat as….well….you can fill in the blank. Thankfully we were on our way out so I just ran down the stairs and out the door! You just have to laugh at something like that.
My grandmother is in some sort of babbling phase where she just says the same things over and over and over BUT, there are some instances where I know, or at least I like to believe that she know me and realizes that I am family and that I love her. There have been several instances when I was leaving or even just chatting with her, where she would just look at me and tell me she was proud of me. Maybe I am just believing what I want to believe, but I truly think there is some part of her still in there…..somewhere. It melts my heart when she says. “I love you” which thankfully she says to us quite often. Those three words mean the world to me. It’s all I have left.
Last night, and again, you have to laugh about it because everyone is COMPLETELY FINE, another patient pulled my grandmother out of bed because she thought it was her room and her bed. So we headed down to the hospital to make sure she really was ok and to keep her company. As we were waiting in the hallway and I was standing next to her bed having a “conversation”, she said she was glad that we were chatting and then followed that with, “I’m so very proud of you.” Well, I almost starting to cry right there in the hall. Again, only a few words that make sense out of hours of gibberish but I truly believe at that moment she knew who I was and why I was there.
Several months ago in the nursing home there was a new nurse that we had not seen before. She stopped my family on the way out and asked us if we were Edie’s relatives. We explained who we were and she was asking us question about Mimi back in the day. She basically nailed spot on the kind of person that she was. It was amazing. Some how out of all that haze, she still somehow remains who she was, and this nurse was able to see it.
After I got home last night from the hospital, I pulled out the letters that my grandmother had written to me while I was away at school. I had kept several of them safely tucked away but had never really looked at them since the day I had put them in the drawer. Since she has been ill for so long now, I feel like I had forgotten who she used to be until I re-read those letters. She was an amazing, smart, caring, witty, beautiful woman who thankfully also happened to be my grandmother. It brought tears to my eyes reading those letters and they are a piece of her that I will keep with me forever.
Sunday I will head back to the nursing home for our weekly visit where inevitably my grandmother will babble on incoherently for hours. I’ll do what I always do which is to try to have some what of a conversation with her. That basically consists of me making up things to say or answers to questions you have no idea what they are. I will wave to my “friend” that I see every week sitting at the same table, hide Mimi’s food and my purse from Alfreda who likes to eat everything in sight, smile at the poor woman who repeats over and over, “God help us” and just wait for those three words to make everything ok. “I love you.”
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