My mom passed away yesterday morning...
The last days have been a blur. Part from emotions, part from lack of sleep. My brother, daughter and I spent Saturday night at the nursing home. My sister came back from a trip she was on on Suday night and was able to be there for a couple of hours. I spent Sunday night there with her alone. I was afraid, didn't want to be alone. I know that I could have asked and someone would have stayed, but somehow felt that this was the way it needed to be.
I only left her side when an aide or nurse came in to take care of her. The last time that I did that, early in the morning, she passed on...she waited until I was out of the room...
I called Jim and Jamie, then I called my brother and my sister. Then I called my sister who lives down south. They (except for the sister who lives far away) came and we sat with her and cried and talked and remembered. A nurse brought us coffee and tea and cookies so we had a last cup of coffee (or tea) with her. She loved a good cup of coffee.
She's been cremated and we are having a memorial service next Monday.
The staff at the nursing home went way beyond to see that she was comfortable and that we were also. The social worker searched, begged and pleaded so that she could be moved to a private room. Hospice came in on Saturday so that she would be able to have the meds she needed to be comfortable. Apparently, we have found, the doctor feels uncomfortable upping a patient's meds at a time like this. Hospice was there to help with that. Some of her favorite aides came to see her on Sunday to talk and hug and cry. I had a melt down there alone on Saturday morning and the nurse called the social worker right away who came in to talk to me. I could go on and on. There were a couple of bad moments, but the good so outweigh them that I was able to put them way to the back of my mind.
My own family...husband, daughter, son...were so strong for me. Jon has surprised us all with his caring just by coming and being there, no matter how uncomfortable it was for him to see her the way she was. Jamie stayed nearly all weekend making sure that we had food and drink, just being there for us and her Gigi. She was texting me Sunday night after she found out my brother had left, insisting that I let her come up and stay with me. I insisted back that I would be okay, knowing that sitting in a chair all night and going to work in the morning would be way too hard, expecially after sitting in a chair all the night before, mostly awake. I am so blessed. Seeing Jim with tears in his eyes at the hospital and nursing home...and on Sunday morning he came in and my brother decided to leave to shower and take care of some things. I would wait until he came back and then I would leave to do the same. Jim insisted that I go, that he could be there with her. When I went back, he was sitting by her bedside holding her hand...something he had done a couple of other times over the past several days. He and Jamie were the first ones to come back after she died yesterday. They must have sped (Jamie must have been driving!) because they made it very quickly knowing that I was there alone. I was grateful for that, because I was able to cry with just the two of them before my brother and sister came.
I knew this would be harder than I could imagine, but it's even more difficult than that...
Tuesday, July 27, 2010
Friday, July 23, 2010
Update on my mom
My mom is a strong woman. Her body is weak, her mind is confused, but her heart keeps her going.
Within an hour after arriving home on Tuesday, I went to see her at her nursing home. She was very confused, but alert. Every day she's been progressively worse.
Yesterday she was agitated, calling out incoherently, but didn't seem to know we were there, not responding to us at all. We (my brother and I, my sister is out of town) knew it wasn't good. We left for a little while, planning to go back late afternoon/evening. Within an hour of being home, the nurse practitioner from her doctor's office called. She said that she was deteriorating very quickly, her vitals were not good, and we should come back. We quickly went back, while getting ahold of our sisters and my kids and my nephews. The social worker that my mom knew in the other wing she was in was waiting for us. She's so kind and compassionate.
We didn't think she would make it through the evening. She did. At 1am, she was resting comfortably and we decided to go home for a few hours, with the promise that the nurse would call if there were any changes.
I dosed till 5:30, then got up and called the nurse. She had rested comfortably all night and had just gotten agitated, but she had given her her pain meds. I was back there before 6:30. She's so agitated and calling out and pulling her gown and covers off. It's hard to watch. The clinical coordinator came in very early and sat with me and asked if we would be interested in hospice. Yes. She would have the social worker take care of it. A couple of hours later the social worker (a different one than the one from yesterday) came in and we asked about it. She said that she could call, but nothing would happen till Monday or Tuesday. Huh??? We also talked about the possibility of moving her to a more private room. By the time we left, she had not started taking care of either.
I have to say that everyone (except this social worker) has gone out of their way to make sure my mom is comfortable and her needs are met. The have been extremely kind and caring to our mom and to us.
I came home and called hospice who told me that if I called her doctor and could have an order called or faxed to them, they would start this weekend. I called the doctor's office and explained the situation. I'm hoping for hospice, but will deal without. Because she's had so many ups and downs lately, it was hard to tell that her time was really coming. My brother said that she had many good days while I was away.
I decided that it would be important for my mom to have a priest come in, so left a message with spiritual care services at the nursing home. I can't decide what else needs to be done. This is so hard...
I came home to shower, eat and do some paperwork, but here I am on the computer. I have to go back soon. I ask for prayers. We accept that there will be no "coming back" this time. We just want her to be comfortable...
Within an hour after arriving home on Tuesday, I went to see her at her nursing home. She was very confused, but alert. Every day she's been progressively worse.
Yesterday she was agitated, calling out incoherently, but didn't seem to know we were there, not responding to us at all. We (my brother and I, my sister is out of town) knew it wasn't good. We left for a little while, planning to go back late afternoon/evening. Within an hour of being home, the nurse practitioner from her doctor's office called. She said that she was deteriorating very quickly, her vitals were not good, and we should come back. We quickly went back, while getting ahold of our sisters and my kids and my nephews. The social worker that my mom knew in the other wing she was in was waiting for us. She's so kind and compassionate.
We didn't think she would make it through the evening. She did. At 1am, she was resting comfortably and we decided to go home for a few hours, with the promise that the nurse would call if there were any changes.
I dosed till 5:30, then got up and called the nurse. She had rested comfortably all night and had just gotten agitated, but she had given her her pain meds. I was back there before 6:30. She's so agitated and calling out and pulling her gown and covers off. It's hard to watch. The clinical coordinator came in very early and sat with me and asked if we would be interested in hospice. Yes. She would have the social worker take care of it. A couple of hours later the social worker (a different one than the one from yesterday) came in and we asked about it. She said that she could call, but nothing would happen till Monday or Tuesday. Huh??? We also talked about the possibility of moving her to a more private room. By the time we left, she had not started taking care of either.
I have to say that everyone (except this social worker) has gone out of their way to make sure my mom is comfortable and her needs are met. The have been extremely kind and caring to our mom and to us.
I came home and called hospice who told me that if I called her doctor and could have an order called or faxed to them, they would start this weekend. I called the doctor's office and explained the situation. I'm hoping for hospice, but will deal without. Because she's had so many ups and downs lately, it was hard to tell that her time was really coming. My brother said that she had many good days while I was away.
I decided that it would be important for my mom to have a priest come in, so left a message with spiritual care services at the nursing home. I can't decide what else needs to be done. This is so hard...
I came home to shower, eat and do some paperwork, but here I am on the computer. I have to go back soon. I ask for prayers. We accept that there will be no "coming back" this time. We just want her to be comfortable...
Wednesday, July 7, 2010
just a little update
My mom has shown no real improvement. She knows my sister, brother and me. She thought my daughter was me the other day. Other than that, she is still very confused.
Every other time she has been so ill, she has rallied and come back. We're still waiting for that to happen, but accepting that it probably won't...
Every other time she has been so ill, she has rallied and come back. We're still waiting for that to happen, but accepting that it probably won't...
Saturday, July 3, 2010
Back to the nursing home
Short post. I promise. :)
Yesterday my mom was moved back to the nursing home. She's in a room with two other women and they tell us that they hope to move her back to her old room with her one roommate soon.
My sister and I waited for two hours at the nursing home for her. The ambulance was running behind. She was in good spirits, seeing familiar faces even if she was in a different room. She is still very confused.
I didn't go in today. I feel guilty, but I am exhausted. I have spent several hours each day of the last several days with her. It has been emotionally draining. I needed a break and I am comforted by the fact that the nurse will call either my sister or I if there is any change whatsoever.
My sister and I were totally surprised when our mom's stuff was brought from her other room. I think there were nine boxes! She has saved every card, salt, pepper and sugar packets, jelly packs to name a few of the miscellaneous odds and ends. Since she will only wear nightgowns that is what we have been getting her for birthday, Christmas, etc. We didn't realize she has so much. I unpacked a little jar of Avon anti-aging serum. My sister told me that she got it for her, because she asked her for it! Isn't that a hoot? We unpacked what she needed and what would fit neatly and the rest of it is in my garage for now.
Who knows what will happen next. She was so very tired yesterday when she got all settled in to her bed. She is still weak and her mind is not here in the present. Will her mind come back a little? We don't know...
Yesterday my mom was moved back to the nursing home. She's in a room with two other women and they tell us that they hope to move her back to her old room with her one roommate soon.
My sister and I waited for two hours at the nursing home for her. The ambulance was running behind. She was in good spirits, seeing familiar faces even if she was in a different room. She is still very confused.
I didn't go in today. I feel guilty, but I am exhausted. I have spent several hours each day of the last several days with her. It has been emotionally draining. I needed a break and I am comforted by the fact that the nurse will call either my sister or I if there is any change whatsoever.
My sister and I were totally surprised when our mom's stuff was brought from her other room. I think there were nine boxes! She has saved every card, salt, pepper and sugar packets, jelly packs to name a few of the miscellaneous odds and ends. Since she will only wear nightgowns that is what we have been getting her for birthday, Christmas, etc. We didn't realize she has so much. I unpacked a little jar of Avon anti-aging serum. My sister told me that she got it for her, because she asked her for it! Isn't that a hoot? We unpacked what she needed and what would fit neatly and the rest of it is in my garage for now.
Who knows what will happen next. She was so very tired yesterday when she got all settled in to her bed. She is still weak and her mind is not here in the present. Will her mind come back a little? We don't know...
Friday, July 2, 2010
Yesterday...another up day. Mom seems to have rallied. Although she is "out there", she was alert and awake and talking and eating. She told some very funny stories, mostly about things she thinks happened that were really dreams (we assume) that she has had. We thought she would be discharged, but the nursing home had to give her bed away and we have to wait for today for them to have a bed for her. We could have her bed held while she's in the hospital...for $185 a day! Can't afford it and they assure us that she will have a bed to go back to, just not necessarily in the room she was in when she left. The nursing home is also a rehab center, so patients come and go, hence the reason for her bed being given away for a short time.
We spoke to the doctor again. Some things are clarified in my mind. I mean, I don't have the medical knowledge that my sister has (she was trained as an RN), so when I am given information I have to digest it and think about it and ask questions that I didn't think to ask when the doctor is throwing this information at me. When he says that he wants us to make the decision not to send her back to the hospital he means that if she has another infection that cannot be treated by the antibiotics that the nursing home would give her, then we just let her go. The nursing home does not start iv's, therefore if she needs an iv antibiotic (which she has every time she has gotten an infection for the last several years) we are just supposed to let her die of a treatable infection?
In our area (or does this happen everywhere?), your own doctor does not see you at the hospital. You see a hospitalist. Your doctor receives a daily report on your condition and any changes, but he/she does not come to the hospital. So, this hospitalist that my mom is seeing does not know her. He only sees the old woman, in pain with advanced dementia. He does not know the woman who, if she recovers to where she was before she had this infection, does not have advanced dementia. Although she is confused she knows us and she knows where she is, etc. She can help make some of her decisions.
Where do you draw the line? She has chosen not to be resuscitated. She has chosen not to take extraordinary means to keep her alive. Is an iv antibiotic considered extraordinary means or is it a course of treatment?
I mean I had pneumonia last year and needed iv antibiotics. I was very ill, but I recovered. I probably wouldn't have without the strong iv antibiotics. If I had a guardian, they could have made the decision to withhold the iv antibiotics and just wait and see if regular antibiotics works, and if they didn't, just watch me die of a treatable illness?
When it's my mom's time to go I will accept that. She is worn out and she suffers with debilitating pain. But I can't watch an infection ravage her body until it kills her.
Am I babbling? Am I making sense?
We spoke to the doctor again. Some things are clarified in my mind. I mean, I don't have the medical knowledge that my sister has (she was trained as an RN), so when I am given information I have to digest it and think about it and ask questions that I didn't think to ask when the doctor is throwing this information at me. When he says that he wants us to make the decision not to send her back to the hospital he means that if she has another infection that cannot be treated by the antibiotics that the nursing home would give her, then we just let her go. The nursing home does not start iv's, therefore if she needs an iv antibiotic (which she has every time she has gotten an infection for the last several years) we are just supposed to let her die of a treatable infection?
In our area (or does this happen everywhere?), your own doctor does not see you at the hospital. You see a hospitalist. Your doctor receives a daily report on your condition and any changes, but he/she does not come to the hospital. So, this hospitalist that my mom is seeing does not know her. He only sees the old woman, in pain with advanced dementia. He does not know the woman who, if she recovers to where she was before she had this infection, does not have advanced dementia. Although she is confused she knows us and she knows where she is, etc. She can help make some of her decisions.
Where do you draw the line? She has chosen not to be resuscitated. She has chosen not to take extraordinary means to keep her alive. Is an iv antibiotic considered extraordinary means or is it a course of treatment?
I mean I had pneumonia last year and needed iv antibiotics. I was very ill, but I recovered. I probably wouldn't have without the strong iv antibiotics. If I had a guardian, they could have made the decision to withhold the iv antibiotics and just wait and see if regular antibiotics works, and if they didn't, just watch me die of a treatable illness?
When it's my mom's time to go I will accept that. She is worn out and she suffers with debilitating pain. But I can't watch an infection ravage her body until it kills her.
Am I babbling? Am I making sense?
Thursday, July 1, 2010
Random things on a Thursday
It is Thursday, right?
I have to think for a minute about that...
It's been a long week. Physically and emotionally draining.
I've been spending a good part of each day at the hospital with my mom. Ups and downs. Good days and bad. Yesterday was bad. She told my sister and I that she wanted us to know that she loves us very much. She seems ready to go...
The doctor is probably sending her back to the nursing home today. She will continue on iv antibiotics and pain meds. The main goal is to keep her comfortable. He advises that we might make the decision not to allow the nursing home to send her back to the hospital. She is suffering and so so worn out...
Her nurse told us that yesterday morning she said to her, "You know what I would like? Sex. That's what I would like." The nurse had to have her repeat it because she wasn't sure she heard right!
Sometimes she is so kind and loving and sweet. Five minutes later she is hitting and swearing (words that we didn't even know she knew!) and yelling. It's a good thing that I worked in a nursing home in my younger years so it isn't a total shock. Difficult when it's your own mother though.
My house is a wreck. Even when I'm home, I just don't have any energy for...anything.
That brings me to eating. When I'm eating it's not what I should be eating. All of the sudden I notice that my clothes are getting tight. How did that happen so quickly??
I'm worried about the next couple of weeks. My brother is set to leave for a week in Texas a few days before Jim and I are set to leave go to LauraPalooza (I am trying to be exciting) a few days before my sister and her husband are set to leave on a charter fishing trip. There will be an overlap of a couple of days when both my sister and I will be away. What do we do? I'm afraid to be away...
I have to think for a minute about that...
It's been a long week. Physically and emotionally draining.
I've been spending a good part of each day at the hospital with my mom. Ups and downs. Good days and bad. Yesterday was bad. She told my sister and I that she wanted us to know that she loves us very much. She seems ready to go...
The doctor is probably sending her back to the nursing home today. She will continue on iv antibiotics and pain meds. The main goal is to keep her comfortable. He advises that we might make the decision not to allow the nursing home to send her back to the hospital. She is suffering and so so worn out...
Her nurse told us that yesterday morning she said to her, "You know what I would like? Sex. That's what I would like." The nurse had to have her repeat it because she wasn't sure she heard right!
Sometimes she is so kind and loving and sweet. Five minutes later she is hitting and swearing (words that we didn't even know she knew!) and yelling. It's a good thing that I worked in a nursing home in my younger years so it isn't a total shock. Difficult when it's your own mother though.
My house is a wreck. Even when I'm home, I just don't have any energy for...anything.
That brings me to eating. When I'm eating it's not what I should be eating. All of the sudden I notice that my clothes are getting tight. How did that happen so quickly??
I'm worried about the next couple of weeks. My brother is set to leave for a week in Texas a few days before Jim and I are set to leave go to LauraPalooza (I am trying to be exciting) a few days before my sister and her husband are set to leave on a charter fishing trip. There will be an overlap of a couple of days when both my sister and I will be away. What do we do? I'm afraid to be away...
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