Today was a bit of a challenge.
Wondergirl was off today due to a previous commitment, so I called another caregiver in as a temp to cover for her. We arranged for her to meet Sis at 8 a.m. to go over all the things that needed learning before she could be left on her own.
Then, on the way to work this morning, I received a phone call from Sis. No caregiver had shown up. I tried to call her, but no one answered and her phone was not taking messages. I called the person who had recommended both Wondergirl and this person to find out if she knew anything about where the phantom caregiver was, but got her recorder.
This was not good. The day was not starting well at all. Thank goodness I had already stopped at Starbuck's for coffee, or the morning might have been totally lost.
I called Sis and explained the situation. She agreed to stay with Mom until I could get there at around 1 p.m. since she also had to work today. I took half of a sick day, and we were in business.
On the way there I stopped and picked up chicken livers for Mom, sampling a couple on the way there to make sure they were fresh and of good quality. Mom is very picky about her chicken livers. Sis said Mom hadn't been able to eat anything for breakfast since she kept choking, but she seemed to handle small pieces of the chicken livers well. She ate about six of them before she said she was full.
Sis also told me she'd been having a struggle with Mom over her clothing today. Mom got dressed then wanted to change clothes a few times during the morning. That wouldn't be so bad if it wasn't such a struggle to move her, much less dress her. And Mom isn't the type to just let things go if you explain that it can't be done right then. She wants things done NOW. Things take on an exaggerated importance to her, and she doesn't stop talking about what she wants until she gets it - at least in the clothing department.
So Sis was understandably edgy when I got there today. Little did I know what was in store for me.
Mom decided it would be good to go to bed after she ate, so I loaded her up in the wheelchair and took her in the bedroom. After I got her settled in bed she started in.
"I want to take this robe off."
"But Mom, you don't have anything on under it."
"Yes I do. I have pajamas on."
"Nope. Just bare skin. Nekkid, bare skin."
"What's the matter with you?? Can't you see these pajamas???"
And so it went. She getting more and more mad because I wouldn't let her lie in bed with only her birthday suit on, me tearing my hair out because the empress had no clothes. Thankfully, the doorbell rang. It was one of Mom's best friends, come to visit.
Zora stayed for over an hour, God bless her. I don't know what she found to talk about in all that time, but talk she did. And as she was getting ready to leave, the Nekkid Talk started up again. Only this time I had reinforcements.
"Mom, you don't have any pajamas on under that robe."
"Yes I do!"
"No, you don't. And if you don't believe ME, let's ask Zora."
We asked Zora, and she confirmed the naked part. So that made it true. Gee, and here I was having so much fun lying to Mom about being naked. I'm so glad Zora could come along and tell her the TRUTH.
Sheesh.
After Zora left Mom started in on another kick. Now she wanted to change into another outfit. I asked her why, and she told me she had Bunco tonight and had to get dressed because Roberta would be picking her up soon. I explained that Bunco had been cancelled because tonight was Halloween and the girls wanted to be home to hand out candy to their grandchildren when they came over. Mom wasn't buying it, so we called Zora, who was home by that time. Zora talked to Mom and confirmed it, but unlike before, Mom didn't believe her.
I was about to be sunk.
I must have told her the same story twenty times, but she kept coming back with wanting to get dressed for Bunco. Finally I decided to compromise. I told her we'd put her Halloween sweatshirt on and wait to put the pants on until later. She agreed to do that, then complained that there were straight pins sticking her from the sweatshirt.
By then I was completely bald from pulling my hair out by the roots.
Her knee was hurting pretty badly about that time, so I gave her some pain medicine that helped her rest for a while. We both needed her to rest.
Have I mentioned lately that caregivers should be paid more?
Friday, October 31, 2008
All That Matters
Our current daytime caregiver, Wondergirl, has to leave at 4:45 p.m. for the next week or so to get to her second job. So for those few hours we're left alone with Mom.
Mostly I like to stay with her because I haven't seen her all day. Sis has usually been in and out - lately mostly in - so I enjoy having my time with her.
Last night we talked. She was lucid, and it was a very sweet time. We talked about how long she'd been ill, and she knew it was over four months. We talked about Dad and his visit. We talked about the love we had, me for her, and she for the entire family. She spoke of her appreciation for all we've done for her since the stroke. She thanked me, and through me, Sis, for taking such good care of her.
Somehow that makes me uncomfortable. She shouldn't have to thank us for doing what we do out of love for her. She is so worth every minute of time we put into this, every single one. To think that she has to thank us for our time and help when that's what she's given so freely to us all our lives seems ludicrous to me.
I told her she never had to thank us...never had to tell us we were appreciated. I told her we did it because of our love for her. Her answer was that she WANTED to thank us, because she wanted us to know that what we did was important to her. That it mattered. That she loved us.
As if we could ever forget.
Her whole life has been dedicated to loving us in one way or another. Yes, she drove me crazy at times. I did the same to her. Yes, we fought at times. But we always made up. No, our lives together have not always been a bed of roses.
But love is the one constant throughout it all. The love has always, always been there.
And in the end, that's all that matters.
Mostly I like to stay with her because I haven't seen her all day. Sis has usually been in and out - lately mostly in - so I enjoy having my time with her.
Last night we talked. She was lucid, and it was a very sweet time. We talked about how long she'd been ill, and she knew it was over four months. We talked about Dad and his visit. We talked about the love we had, me for her, and she for the entire family. She spoke of her appreciation for all we've done for her since the stroke. She thanked me, and through me, Sis, for taking such good care of her.
Somehow that makes me uncomfortable. She shouldn't have to thank us for doing what we do out of love for her. She is so worth every minute of time we put into this, every single one. To think that she has to thank us for our time and help when that's what she's given so freely to us all our lives seems ludicrous to me.
I told her she never had to thank us...never had to tell us we were appreciated. I told her we did it because of our love for her. Her answer was that she WANTED to thank us, because she wanted us to know that what we did was important to her. That it mattered. That she loved us.
As if we could ever forget.
Her whole life has been dedicated to loving us in one way or another. Yes, she drove me crazy at times. I did the same to her. Yes, we fought at times. But we always made up. No, our lives together have not always been a bed of roses.
But love is the one constant throughout it all. The love has always, always been there.
And in the end, that's all that matters.
Thursday, October 30, 2008
Out-Of-Town Guests And A Couple Of New Faces
My cousin Jim and his wife Anna came to visit Mom yesterday. They got in late the night before after driving what Google Maps says is at least an almost eleven hour trip, and that's not counting traffic. They stayed the day with Mom, then left shortly after I got there for the trip home. Mom slept a good deal of the time they were there according to Sis, but she loved it that they came. She even refused to be moved to her bed, opting to stay on the couch all day so that she could be a part of things and visit when she was awake.
It was a good day for her.
Other friends also came to visit. My father even made an appearance.
During this, a sweet girl showed up for an interview. Her name is Charise, and she just graduated from CNA school last year. She is bright, friendly and caring, and we hired her on the spot to take over the day shift with Mom. She started this morning.
To let you know how much we like her, Sis left her with Mom and went grocery shopping. As she left, she overheard Charise talking to Mom via the baby monitors we have set up. Charise was offering to set Mom's hair in rollers after her bath and shampoo today.
I think I'm in love, and Sis thinks we should adopt her.
She wants to read to Mom. She wants to find activities Mom can do. She wants Mom to be able to look forward to the days she has left rather than waiting out her death. She gets along like gangbusters with the nighttime caregiver, and she understands the meds and the feeding tube.
We are blessed.
In other news, we also hired a weekend caregiver. She'll be with Mom Friday evening through Sunday at 8 p.m. We're hoping Marie works out as well as Charise. She has a lot of experience and has worked in the field for many years.
As you can tell from the photo above, Mom's hemoglobin is very low. She has no energy at all, and even when she wakes up from a nap she complains of being tired. It was difficult to get her from the couch to her bed last night because she dreaded what it would take out of her for her to move.
This morning she's had a bath and is having Cream of Wheat for breakfast along with her tube feeding. The bath was another energy drain, but necessary.
Someday I hope God explains the reason some people had to go through such trials in dying. I hope He lets us in on why we had to go through such pain in losing those we loved. I hope He tells us why it couldn't have been a joyous, uplifting experience instead.
Because really, I could go for a little joyous and uplifting right now.
Wednesday, October 29, 2008
It All Started With The Chicken
Yesterday when I walked in the door at Mom's, she and Sis were making chicken salad. Mom makes the best chicken salad in the known world, and there will be no argument from the readers, thankyouverymuch.
Mom got tired sitting there in the wheelchair, so Sis and I wheeled her into the living room and laid her down on the couch to rest. She fell asleep almost immediately.
Back in the kitchen, Sis continued to mix up the chicken salad. "Here," she said. "Taste this and see what's missing." I tasted. There was something not there, but I couldn't quite tell what it was. I added more pepper, more salt. Sis tasted it again and declared it needed more salt. I told her I'd just salted it.
We both decided it was time to wake Mom and give her a taste. One tiny bite, and she told us there wasn't enough lemon juice in it. The missing piece was added and it was Mom's chicken salad again.
Mom knew. And when we told her that she was right it made her smile.
So what do we do when she's gone? How do we figure out all these things that she knows by rote? How do we compress all that knowledge and love into whatever time she has left? How do we go on without her?
That's what caused me to have a major meltdown last night. I cried from the time I kissed her goodnight until I went to bed. And it was the ugly cry, my friends. An ugly version of the ugly cry.
Oh, don't get me wrong. I know people go through this every day. Some people have it much worse than we do. Some never get the chance to say goodbye, much less to care for their parent. I am so grateful for this time, any time, I have with her.
But how do people go through all this pain and survive? Sometimes I feel like I've been grieving for Mom for the past five months. There are times when I can push the pain away and be OK, but that's getting harder and harder to do as Mom gets nearer and nearer to going Home.
Before that happens plans need to be made. We have to find the dress she wants to wear. We need to talk with her about her desires, her wishes, her plans. We know she wants to rest next to her parents and sisters in another state. We know how she wants her name to read on the headstone.
And most importantly, we know beyond a shadow of a doubt how much she loves us. That's one piece of knowledge she's given us over and over again.
And we'll carry it with us always.
Mom got tired sitting there in the wheelchair, so Sis and I wheeled her into the living room and laid her down on the couch to rest. She fell asleep almost immediately.
Back in the kitchen, Sis continued to mix up the chicken salad. "Here," she said. "Taste this and see what's missing." I tasted. There was something not there, but I couldn't quite tell what it was. I added more pepper, more salt. Sis tasted it again and declared it needed more salt. I told her I'd just salted it.
We both decided it was time to wake Mom and give her a taste. One tiny bite, and she told us there wasn't enough lemon juice in it. The missing piece was added and it was Mom's chicken salad again.
Mom knew. And when we told her that she was right it made her smile.
So what do we do when she's gone? How do we figure out all these things that she knows by rote? How do we compress all that knowledge and love into whatever time she has left? How do we go on without her?
That's what caused me to have a major meltdown last night. I cried from the time I kissed her goodnight until I went to bed. And it was the ugly cry, my friends. An ugly version of the ugly cry.
Oh, don't get me wrong. I know people go through this every day. Some people have it much worse than we do. Some never get the chance to say goodbye, much less to care for their parent. I am so grateful for this time, any time, I have with her.
But how do people go through all this pain and survive? Sometimes I feel like I've been grieving for Mom for the past five months. There are times when I can push the pain away and be OK, but that's getting harder and harder to do as Mom gets nearer and nearer to going Home.
Before that happens plans need to be made. We have to find the dress she wants to wear. We need to talk with her about her desires, her wishes, her plans. We know she wants to rest next to her parents and sisters in another state. We know how she wants her name to read on the headstone.
And most importantly, we know beyond a shadow of a doubt how much she loves us. That's one piece of knowledge she's given us over and over again.
And we'll carry it with us always.
Tuesday, October 28, 2008
Could I Have A Rim Shot, Please?
Sis: We really do need to put a calendar up for Mom's schedule. Didn't you say something about Hospice sending someone in to give her a bath tomorrow?
Me: No, that's Thursday.
Sis: Oh, that's right. And the chaplain is coming on Friday.
Me: Right.
Sis: So I guess you could say that cleanliness is next to godliness then, huh?
ba-da-bum.....
Me: No, that's Thursday.
Sis: Oh, that's right. And the chaplain is coming on Friday.
Me: Right.
Sis: So I guess you could say that cleanliness is next to godliness then, huh?
ba-da-bum.....
Roberta, Where Are You???
When Mom first had her stroke, a friend of hers named Roberta gave her a little carmel and white Beanie Baby-type dog to hold in her left hand to keep it from drawing up.
Mom promptly named it Roberta.
Somewhere along the way Roberta got lost. But wonder of wonders, a new Roberta took her place. And she begat another Roberta that was carmel and white with a black saddle, and yet another Roberta who was totally carmel.
So now we have Roberta #1, Roberta #2, and Roberta #3.
Only now Roberta #1 is lost again.
We have the rehab center searching for her, and if she's found one of us will drive up and get her. Mom can't be without all three, because Mom thinks there are actually four. It's concerning her greatly that now TWO Robertas are gone. If necessary, we may have to purchase the third Roberta #1 and perhaps even a fourth Roberta #1 just to ease Mom's mind.
In other news, Hospice had to place the dreaded "beaver tail" in Mom on Sunday. That's Mom's term for a catheter, something she despises. However, there were many fluids going into her and none coming out, so something had to be done.
And...
Today I had to let her daily caregiver go. Debbie was sweet to Mom, but wanted to do things her way instead of our way. She got there late both days, could never seem to get the hang of the medications (which really scared us), and the feeding tube seemed to be pretty much beyond her. And Mom didn't care for her.
She wanted to go home when I got there yesterday at 4 p.m. even though she was scheduled to be there until 7 p.m. Then she asked Sis if she could go home this morning for the day because she had cramps.
That pretty much clinched it for me. I asked Sis to tell her she was no longer needed, to pay her and wish her well. Sis, the stinker that she is, handed the phone to her and made ME fire her. Which I did in the sweetest, kindest way I knew how.
If there is such a thing.
So, we're looking again for a daytime caregiver. We have an interview set up for tonight, and if she doesn't show I'll be on the horn to more people and even agencies to get Mom covered. Because we really don't care how much it costs, just so long as she's well-taken care of and happy.
Oh, and has Roberta #1, too.
Mom promptly named it Roberta.
Somewhere along the way Roberta got lost. But wonder of wonders, a new Roberta took her place. And she begat another Roberta that was carmel and white with a black saddle, and yet another Roberta who was totally carmel.
So now we have Roberta #1, Roberta #2, and Roberta #3.
Only now Roberta #1 is lost again.
We have the rehab center searching for her, and if she's found one of us will drive up and get her. Mom can't be without all three, because Mom thinks there are actually four. It's concerning her greatly that now TWO Robertas are gone. If necessary, we may have to purchase the third Roberta #1 and perhaps even a fourth Roberta #1 just to ease Mom's mind.
In other news, Hospice had to place the dreaded "beaver tail" in Mom on Sunday. That's Mom's term for a catheter, something she despises. However, there were many fluids going into her and none coming out, so something had to be done.
And...
Today I had to let her daily caregiver go. Debbie was sweet to Mom, but wanted to do things her way instead of our way. She got there late both days, could never seem to get the hang of the medications (which really scared us), and the feeding tube seemed to be pretty much beyond her. And Mom didn't care for her.
She wanted to go home when I got there yesterday at 4 p.m. even though she was scheduled to be there until 7 p.m. Then she asked Sis if she could go home this morning for the day because she had cramps.
That pretty much clinched it for me. I asked Sis to tell her she was no longer needed, to pay her and wish her well. Sis, the stinker that she is, handed the phone to her and made ME fire her. Which I did in the sweetest, kindest way I knew how.
If there is such a thing.
So, we're looking again for a daytime caregiver. We have an interview set up for tonight, and if she doesn't show I'll be on the horn to more people and even agencies to get Mom covered. Because we really don't care how much it costs, just so long as she's well-taken care of and happy.
Oh, and has Roberta #1, too.
Monday, October 27, 2008
The Gift
This past weekend was hard.
I knew caregivers worked hard to tend to the needs of their clients, but I had no idea how hard.
I do now.
Mom has become noticeably weaker and more pale even since we moved her home. Yesterday, after a sleepless night on Saturday due to pain in her leg and foot, the doctor prescribed Oxycodone for her. I gave her 5 mg at 6:15 p.m., but that didn't touch her pain, so I gave her another 5 mg at 7 p.m. The caregiver reported that she was able to sleep comfortably through the night. I was so happy to hear that, because the one thing we want is for her to be pain-free in all of this.
The other thing we wanted is for her not to be afraid. Unfortunately, that isn't going to happen.
Mom overheard some of the Hospice people say the word "Hospice" while they were here. She didn't say anything to us, but told The Boy that people had better hurry up if they were going to see her "because it wasn't long before she'd be six feet under." After we heard that we decided it was time to shoot the elephant in the room that no one was talking about so that we could all handle things as best we could.
Sis and I went into her room and asked her if she knew what the word Hospice meant. She said she did. She said it was for people that didn't have long to live. We asked if she'd overheard anyone use that word, and she told us she had, and that it scared her.
We explained to her that Doc thought she probably had less than six months to live, so we thought it would be a good idea to bring her home rather than having her in a nursing home or rehab center or hospital. She agreed, and was glad we'd made that decision.
Then we asked her the hard question.
We wanted to know if she wanted us to pursue additional medical care if she needed another transfusion. Did she want to go back to the hospital again? Did she want any extraordinary measures taken to prolong her life?
She thought for a moment, and then told us no. No more hospitals. No more transfusions. No more pain. She was through. Enough was enough.
In that moment she gave us the greatest gift she could have ever given us. She made that decision, taking it off of our shoulders. Now when the time comes there will be no guilt, no wondering "What if?" We'll know it was her choice.
And what a gift it is!
I knew caregivers worked hard to tend to the needs of their clients, but I had no idea how hard.
I do now.
Mom has become noticeably weaker and more pale even since we moved her home. Yesterday, after a sleepless night on Saturday due to pain in her leg and foot, the doctor prescribed Oxycodone for her. I gave her 5 mg at 6:15 p.m., but that didn't touch her pain, so I gave her another 5 mg at 7 p.m. The caregiver reported that she was able to sleep comfortably through the night. I was so happy to hear that, because the one thing we want is for her to be pain-free in all of this.
The other thing we wanted is for her not to be afraid. Unfortunately, that isn't going to happen.
Mom overheard some of the Hospice people say the word "Hospice" while they were here. She didn't say anything to us, but told The Boy that people had better hurry up if they were going to see her "because it wasn't long before she'd be six feet under." After we heard that we decided it was time to shoot the elephant in the room that no one was talking about so that we could all handle things as best we could.
Sis and I went into her room and asked her if she knew what the word Hospice meant. She said she did. She said it was for people that didn't have long to live. We asked if she'd overheard anyone use that word, and she told us she had, and that it scared her.
We explained to her that Doc thought she probably had less than six months to live, so we thought it would be a good idea to bring her home rather than having her in a nursing home or rehab center or hospital. She agreed, and was glad we'd made that decision.
Then we asked her the hard question.
We wanted to know if she wanted us to pursue additional medical care if she needed another transfusion. Did she want to go back to the hospital again? Did she want any extraordinary measures taken to prolong her life?
She thought for a moment, and then told us no. No more hospitals. No more transfusions. No more pain. She was through. Enough was enough.
In that moment she gave us the greatest gift she could have ever given us. She made that decision, taking it off of our shoulders. Now when the time comes there will be no guilt, no wondering "What if?" We'll know it was her choice.
And what a gift it is!
Saturday, October 25, 2008
Home Sweet Home
Mom is home.
And those words are bittersweet indeed.
It's so good to have her in the place where she belongs, for however long that is. I can't help but think she has some idea of what's going on, but it's like the proverbial elephant in the room that no one wants to talk about even though we know it's there.
With the social worker and the nurse coming in today and a slip that I tried to cover, she had to have heard the word Hospice at least ten times. Whether she put two and two together is anyone's guess, so we'll play along as if she hasn't. The next move is hers.
Sis and I had hoped to take her by Panera on the way home to celebrate the happy birthdays she keeps wishing us. But when the aide at the rehab center had trouble transfering her to the car because her good leg gave out we decided against it. We just don't have the skills to transfer her from the wheelchair to the car and back without risking bodily injury to both of us.
It was a sad realization.
After we arrived home, Hubster and The Boy assisted us as we got her into the wheelchair and carted her up the steps to her door. Once she was inside it was as if we had climbed Mount Olympus. Sis and I high-fived each other and set about unpacking the accumulation of almost five months.
The social worker came and left, and we settled Mom in her room for a nap. The Hospice nurse came and went over the feeding tube with us, along with schedules and medications. Sis left for a while to do some shopping and pick up prescriptions, and when she got back we got ambitious and transferred Mom to the couch in the living room so she could watch her beloved Hallmark channel - the one channel neither the hospital nor the rehab center have, and the one she's missed the most these past months.
She fell asleep on the couch, happy.
Sis left, and I stayed to wait for Evonne. She showed up early to meet Mom while she was still awake. Mom seemed to like her, and I was relieved. I went over all the medications, schedules, quirks, and everything else I could think of before I left, but just like a new mother, I'm worried about what will happen tonight.
Will she sleep through the night? Will she be afraid or confused when she wakes up at home? She didn't want me to leave tonight. Should I have stayed this first night?
Again, as always, I'm leaving it up to God to handle. He can take the night watch.
I'm going to bed.
And those words are bittersweet indeed.
It's so good to have her in the place where she belongs, for however long that is. I can't help but think she has some idea of what's going on, but it's like the proverbial elephant in the room that no one wants to talk about even though we know it's there.
With the social worker and the nurse coming in today and a slip that I tried to cover, she had to have heard the word Hospice at least ten times. Whether she put two and two together is anyone's guess, so we'll play along as if she hasn't. The next move is hers.
Sis and I had hoped to take her by Panera on the way home to celebrate the happy birthdays she keeps wishing us. But when the aide at the rehab center had trouble transfering her to the car because her good leg gave out we decided against it. We just don't have the skills to transfer her from the wheelchair to the car and back without risking bodily injury to both of us.
It was a sad realization.
After we arrived home, Hubster and The Boy assisted us as we got her into the wheelchair and carted her up the steps to her door. Once she was inside it was as if we had climbed Mount Olympus. Sis and I high-fived each other and set about unpacking the accumulation of almost five months.
The social worker came and left, and we settled Mom in her room for a nap. The Hospice nurse came and went over the feeding tube with us, along with schedules and medications. Sis left for a while to do some shopping and pick up prescriptions, and when she got back we got ambitious and transferred Mom to the couch in the living room so she could watch her beloved Hallmark channel - the one channel neither the hospital nor the rehab center have, and the one she's missed the most these past months.
She fell asleep on the couch, happy.
Sis left, and I stayed to wait for Evonne. She showed up early to meet Mom while she was still awake. Mom seemed to like her, and I was relieved. I went over all the medications, schedules, quirks, and everything else I could think of before I left, but just like a new mother, I'm worried about what will happen tonight.
Will she sleep through the night? Will she be afraid or confused when she wakes up at home? She didn't want me to leave tonight. Should I have stayed this first night?
Again, as always, I'm leaving it up to God to handle. He can take the night watch.
I'm going to bed.
Friday, October 24, 2008
Gotcha Covered
Last night Sis and I interviewed and hired a woman that we believe will take good care of Mom.
Her name is Evonne. During the day she's a mild-mannered grandmother of three who gets her grandchildren off the bus, fixes them dinner and helps with their homework before her single-mom daughter picks them up at 6:30 p.m. Immediately after that she will be winging her way to Mom's house to spend the entire night and part of the morning with her. She's working 7 p.m. to 7 a.m. or a little later, depending on who I can find today to fill in the daytime slot.
Evonne's friend decided she didn't want the job.
Yes, I know Mom's coming home TOMORROW. Yes, I know I need to have someone lined up to take care of her TOMORROW.
We're doing a lot of praying on this end, and thanking God it's the weekend and I can be the caregiver until Monday during the day if everything goes to heck in a handbasket.
Oh yes.
We pick Mom up from rehab tomorrow at 10 a.m., which means after All The Packing and All The Signing of All The Paperwork we should be home around noon. The Hospice nurse will meet us there, along with as much of the rest of the family as can be there. It may be a trick to get Mom up the hill to her door even with the wheelchair, so we'll need some good, strong men to help.
I just hope it doesn't rain.
After the interview last night we waited around for the equipment to be delivered. Finally, at 8:30 p.m. the truck showed up. He unloaded a hospital bed, side table, oxygen tank, oxygen machine, commode and wheelchair and set everything up. He explained how everything worked and told me if I had any questions to refer to the manual he left for me.
Thank goodness for the manual. I was so tired when he left I think I only absorbed about half of what he said. I still don't know where to plug in that commode....
So today I'm waiting for calls from two different people who may or may not want to take care of Mom. I'm praying God will provide the best person(s) for her, and I'm believing He will. And if all else fails, I'll take time off on the Family Leave Act and take care of her myself and let her pay me what she'd pay a caregiver so my family can continue to do silly things like have electricity and eat.
So any way it goes, Mom, we've got you covered.
Her name is Evonne. During the day she's a mild-mannered grandmother of three who gets her grandchildren off the bus, fixes them dinner and helps with their homework before her single-mom daughter picks them up at 6:30 p.m. Immediately after that she will be winging her way to Mom's house to spend the entire night and part of the morning with her. She's working 7 p.m. to 7 a.m. or a little later, depending on who I can find today to fill in the daytime slot.
Evonne's friend decided she didn't want the job.
Yes, I know Mom's coming home TOMORROW. Yes, I know I need to have someone lined up to take care of her TOMORROW.
We're doing a lot of praying on this end, and thanking God it's the weekend and I can be the caregiver until Monday during the day if everything goes to heck in a handbasket.
Oh yes.
We pick Mom up from rehab tomorrow at 10 a.m., which means after All The Packing and All The Signing of All The Paperwork we should be home around noon. The Hospice nurse will meet us there, along with as much of the rest of the family as can be there. It may be a trick to get Mom up the hill to her door even with the wheelchair, so we'll need some good, strong men to help.
I just hope it doesn't rain.
After the interview last night we waited around for the equipment to be delivered. Finally, at 8:30 p.m. the truck showed up. He unloaded a hospital bed, side table, oxygen tank, oxygen machine, commode and wheelchair and set everything up. He explained how everything worked and told me if I had any questions to refer to the manual he left for me.
Thank goodness for the manual. I was so tired when he left I think I only absorbed about half of what he said. I still don't know where to plug in that commode....
So today I'm waiting for calls from two different people who may or may not want to take care of Mom. I'm praying God will provide the best person(s) for her, and I'm believing He will. And if all else fails, I'll take time off on the Family Leave Act and take care of her myself and let her pay me what she'd pay a caregiver so my family can continue to do silly things like have electricity and eat.
So any way it goes, Mom, we've got you covered.
Thursday, October 23, 2008
Trying To Make Scents Of It All
Last night it was raining hard as I pulled into the driveway at Mom's house.
I had with me all the makings of a chili dinner. My plan was to make chili, strip the bed in her room, send The Boy downstairs for a hot shower after his last football game of the season, eat dinner, and have The Boy and Hubster move the bed out of her bedroom to make way for the hospital bed and other things that will be delivered tonight.
But it didn't quite work out that way. I didn't count on Hubster and his feelings in the whole matter.
You see, Mom was always one for having us over for dinner. She'd make a big pot of steak soup or a roast or pork chops or chicken pot pie or ...you name it, and then invite our family over to devour it. There would be more vegetables than you could shake a stick at, and more than likely a homemade pie.
Mom was always famous for her pies.
But since the stroke there haven't been any of those family meals at her house. Unless, of course, you count the family that comes in from out of town and fixes their own meals when they stay there.
So Hubster was sad. He just wanted to get the bed moved and go home. He didn't want to stay in the house any longer than necessary, because it just wasn't a home without her there.
I couldn't agree more.
We got the bed stripped and moved into another room until the rain let up and we could move it down to the basement. And I have to tell you, the first look I got at her bedroom without the bed in it made things a lot more real for me than they've been up until now.
We're actually doing this. She's coming home.
Have I changed my mind about it? No. Because I still believe it's what is best for Mom. What she would want, if she could logically make the choice. Will I change my mind later?
I hope not.
Tonight we'll be interviewing people who want to take care of Mom. We need someone there 'round-the-clock to make sure she's comfortable and safe, to be sure she gets turned and gets cleaned and gets her medications. We're hoping to find the best people we can for the job, because she deserves the best.
Before I left the house last night I took a moment and buried my head inside the clothes in her closet. Just to try to smell the smell that was Mom before the stroke, before all this hell began.
Of course, after four-and-a-half months, it was gone.
This growing up stuff isn't all it's cracked up to be.
I had with me all the makings of a chili dinner. My plan was to make chili, strip the bed in her room, send The Boy downstairs for a hot shower after his last football game of the season, eat dinner, and have The Boy and Hubster move the bed out of her bedroom to make way for the hospital bed and other things that will be delivered tonight.
But it didn't quite work out that way. I didn't count on Hubster and his feelings in the whole matter.
You see, Mom was always one for having us over for dinner. She'd make a big pot of steak soup or a roast or pork chops or chicken pot pie or ...you name it, and then invite our family over to devour it. There would be more vegetables than you could shake a stick at, and more than likely a homemade pie.
Mom was always famous for her pies.
But since the stroke there haven't been any of those family meals at her house. Unless, of course, you count the family that comes in from out of town and fixes their own meals when they stay there.
So Hubster was sad. He just wanted to get the bed moved and go home. He didn't want to stay in the house any longer than necessary, because it just wasn't a home without her there.
I couldn't agree more.
We got the bed stripped and moved into another room until the rain let up and we could move it down to the basement. And I have to tell you, the first look I got at her bedroom without the bed in it made things a lot more real for me than they've been up until now.
We're actually doing this. She's coming home.
Have I changed my mind about it? No. Because I still believe it's what is best for Mom. What she would want, if she could logically make the choice. Will I change my mind later?
I hope not.
Tonight we'll be interviewing people who want to take care of Mom. We need someone there 'round-the-clock to make sure she's comfortable and safe, to be sure she gets turned and gets cleaned and gets her medications. We're hoping to find the best people we can for the job, because she deserves the best.
Before I left the house last night I took a moment and buried my head inside the clothes in her closet. Just to try to smell the smell that was Mom before the stroke, before all this hell began.
Of course, after four-and-a-half months, it was gone.
This growing up stuff isn't all it's cracked up to be.
Wednesday, October 22, 2008
Perhaps With Roller Skates
Yesterday was Mom's final transfusion. And, true to form, the hospital was a veritable study in ineptitude.
Mom arrived at 6:45 a.m. to be met by a very sleepy Sis who had her coffee in hand. They were taken up to Mom's room, an IV was started, and the wait began.
A FOUR-HOUR WAIT. For the first of two pints of blood. Sheesh.
And while all of this was going on, Mom was having the runs like crazy. Some of it was due to the tube feeding. Much of it was due to the internal bleeding. Sis said she couldn't help but think Mom was pooping out as much blood as she was getting added.
During one of the times Mom was being cleaned up Sis and I walked out of her room and had a discussion about her upcoming move home. Sis was having trouble with the whole letting-her-go rather than continuing to give her transfusion after transfusion. She asked me how I could do it. I explained to her that I considered it similar to a war. Every time we've gone into battle we've lost ground. Mom isn't getting better, but seems to be getting worse. The transfusions are more and more frequent, even though she isn't on any blood thinners. I think rather than making her miserable by fighting all the way to the bitter end, we just surrender and let her live out her time in relative happiness and peace in her own home.
Besides, I told her, we know we'll see Mom again. This isn't forever. And Sis' answer to that?
Through tears, "Perhaps with roller skates."
It was obvious the strain of it all had gotten to her.
"What?" I said, after I closed my mouth and stopped gaping at her.
"Perhaps with roller skates." she answered. "Mom could never have roller skates or learn to ride a bike because there were no paved roads or sidewalks where she grew up. So maybe when we get to Heaven and see her, she'll be wearing roller skates."
Maybe so, Sis. Maybe so.
Mom arrived at 6:45 a.m. to be met by a very sleepy Sis who had her coffee in hand. They were taken up to Mom's room, an IV was started, and the wait began.
A FOUR-HOUR WAIT. For the first of two pints of blood. Sheesh.
And while all of this was going on, Mom was having the runs like crazy. Some of it was due to the tube feeding. Much of it was due to the internal bleeding. Sis said she couldn't help but think Mom was pooping out as much blood as she was getting added.
During one of the times Mom was being cleaned up Sis and I walked out of her room and had a discussion about her upcoming move home. Sis was having trouble with the whole letting-her-go rather than continuing to give her transfusion after transfusion. She asked me how I could do it. I explained to her that I considered it similar to a war. Every time we've gone into battle we've lost ground. Mom isn't getting better, but seems to be getting worse. The transfusions are more and more frequent, even though she isn't on any blood thinners. I think rather than making her miserable by fighting all the way to the bitter end, we just surrender and let her live out her time in relative happiness and peace in her own home.
Besides, I told her, we know we'll see Mom again. This isn't forever. And Sis' answer to that?
Through tears, "Perhaps with roller skates."
It was obvious the strain of it all had gotten to her.
"What?" I said, after I closed my mouth and stopped gaping at her.
"Perhaps with roller skates." she answered. "Mom could never have roller skates or learn to ride a bike because there were no paved roads or sidewalks where she grew up. So maybe when we get to Heaven and see her, she'll be wearing roller skates."
Maybe so, Sis. Maybe so.
Monday, October 20, 2008
One Last Time
Today Mom's hemoglobin came in at 6.0.
We have an appointment to meet with Hospice this afternoon at Mom's house at 4:30 p.m. Unfortunately, unless we transfuse her one more time, the likelihood of her making it home or being able to enjoy it once she gets there is very small.
The last time she received blood was the 14th of this month. Only a week ago.
So we decided to transfuse her one last time. One last fill-up, to give us time to get her home ready to receive her. Time to make all the arrangements necessary for 24-hour care, equipment, and scheduling.
I'll be sending out an email to her family and friends after we meet with Hospice to let them know how things will happen, to give them time to come in and visit with her. Time to make her remaining days as happy as they can be.
And I hope they will come, because those visits have become the joy of her life.
She told me yesterday that she wanted to get a big-screen television when she got home. I asked her why, and she told me that maybe people would come to the house to see her if she had something like that to draw them there.
As if she wasn't enough. As if people wouldn't want to come to see "just" her. She always did sell herself short.
So over the next few weeks we'll try to make her as comfortable and as happy as we can. No matter how much time it takes, no matter how much it costs.
Because she's more than enough. She deserves the best.
We have an appointment to meet with Hospice this afternoon at Mom's house at 4:30 p.m. Unfortunately, unless we transfuse her one more time, the likelihood of her making it home or being able to enjoy it once she gets there is very small.
The last time she received blood was the 14th of this month. Only a week ago.
So we decided to transfuse her one last time. One last fill-up, to give us time to get her home ready to receive her. Time to make all the arrangements necessary for 24-hour care, equipment, and scheduling.
I'll be sending out an email to her family and friends after we meet with Hospice to let them know how things will happen, to give them time to come in and visit with her. Time to make her remaining days as happy as they can be.
And I hope they will come, because those visits have become the joy of her life.
She told me yesterday that she wanted to get a big-screen television when she got home. I asked her why, and she told me that maybe people would come to the house to see her if she had something like that to draw them there.
As if she wasn't enough. As if people wouldn't want to come to see "just" her. She always did sell herself short.
So over the next few weeks we'll try to make her as comfortable and as happy as we can. No matter how much time it takes, no matter how much it costs.
Because she's more than enough. She deserves the best.
Sunday, October 19, 2008
Do Not Pass Go, Do Not Collect $32,000
Mom has been unable to let go of the idea that she has won the lottery. She can't understand why we haven't been more excited about it, and why we haven't bothered to collect her winnings from the local SunFresh grocery store.
One reason would be the fact that the "ticket" she gave Sis to take to the store was, in actuality, her ID bracelet from the hospital.
We didn't want to lie to her or to tell her the truth and hurt her feelings, so we've just been telling her that we haven't had a chance to check things out yet. We hoped she'd just let it drop, but that hasn't been the case. She asks about it every day.
She'd decided that she was going to build a new house with the money, then pay for college educations for all five grandchildren, and split the remainder between Sis and me so that we could pay off all of our bills.
Quite a feat for $32,000. Especially after taxes.
So today when she brought it up I decided to break the news to her that the numbers didn't match on the ticket. There would be no prize.
She took it surprisingly well. She was a little down and dejected about it, yes, but we didn't dwell on it. We talked mostly about all the good things she's done for her grandchildren. How she spoiled them, how she loved on them, and how she didn't need to provide their education to them on a silver platter - that they needed to work for it to appreciate it more.
We also spoke about her going home for good. She has only about three weeks left in the rehab center that will be covered by Medicare and her tie-in insurance. However, since her hemoglobin was 8.3 both Thursday and Friday, there is a chance it has dropped further over the weekend. They'll be testing her hemoglobin again tomorrow, and if it's dropped much lower we need to get her home.
She told me today that she doesn't want the tube feedings anymore. We'll have to talk with Doc about that as well as the Hospice people. The feedings cause her to have the runs, which means she has to be cleaned up more frequently, which is humiliating for her. I flat out told her that if she didn't have the tube feedings she would likely die of starvation, and that didn't seem to phase her much at all.
She talked today about how much she misses her family. Not the family that's alive and well here around her, but the family that has already gone to be with the Lord. Her five sisters, her parents, the other people she loved and wants to see again.
I think she's winding down. Realizing, without admitting, that her time on earth could be short. Telling us in her own way that she's ready.
And that is somehow comforting for me to hear.
One reason would be the fact that the "ticket" she gave Sis to take to the store was, in actuality, her ID bracelet from the hospital.
We didn't want to lie to her or to tell her the truth and hurt her feelings, so we've just been telling her that we haven't had a chance to check things out yet. We hoped she'd just let it drop, but that hasn't been the case. She asks about it every day.
She'd decided that she was going to build a new house with the money, then pay for college educations for all five grandchildren, and split the remainder between Sis and me so that we could pay off all of our bills.
Quite a feat for $32,000. Especially after taxes.
So today when she brought it up I decided to break the news to her that the numbers didn't match on the ticket. There would be no prize.
She took it surprisingly well. She was a little down and dejected about it, yes, but we didn't dwell on it. We talked mostly about all the good things she's done for her grandchildren. How she spoiled them, how she loved on them, and how she didn't need to provide their education to them on a silver platter - that they needed to work for it to appreciate it more.
We also spoke about her going home for good. She has only about three weeks left in the rehab center that will be covered by Medicare and her tie-in insurance. However, since her hemoglobin was 8.3 both Thursday and Friday, there is a chance it has dropped further over the weekend. They'll be testing her hemoglobin again tomorrow, and if it's dropped much lower we need to get her home.
She told me today that she doesn't want the tube feedings anymore. We'll have to talk with Doc about that as well as the Hospice people. The feedings cause her to have the runs, which means she has to be cleaned up more frequently, which is humiliating for her. I flat out told her that if she didn't have the tube feedings she would likely die of starvation, and that didn't seem to phase her much at all.
She talked today about how much she misses her family. Not the family that's alive and well here around her, but the family that has already gone to be with the Lord. Her five sisters, her parents, the other people she loved and wants to see again.
I think she's winding down. Realizing, without admitting, that her time on earth could be short. Telling us in her own way that she's ready.
And that is somehow comforting for me to hear.
Saturday, October 18, 2008
It Will Be Alright. It's Going To Get Better. This Won't Last Forever.
Yesterday I went to visit Mom for the first time since returning from Arkansas.
She was in bed and being fed through her tube when I went in, and she'd been crying. She told me she missed me so much while I was gone because she gets very lonely when no one is there with her. Even though she'd had more visitors in the time I'd been gone since she'd had when I was there.
And she wept even more.
Then she went through her litany of delusions. How Sis was sitting over there and wouldn't wake up no matter how loud she yelled. (Sis was not there.) How Dad wouldn't wake up either, even though he was next to her in the bed. (Obviously untrue.) How both her doctors had been in a car wreck and were in therapy with her yesterday. How she couldn't understand why we weren't more excited about winning the lottery and why we hadn't cashed in the ticket yet. How people who hadn't been there had been there, and about how much pain she was in.
Then I tried to talk to her about other things. I told her about my trip, about the funeral, the flowers, the music. When I started to talk to her about how my aunt's death hurt so very much, she started her litany over again.
I think it was then I realized that this person is no longer anything like the mother I knew and loved.
It's not that I don't love her still - I most definitely do. But the mother I knew would comfort me through her pain. And I think that's what I miss the most.
Mom telling me everything's going to be alright. Everything's going to get better. That this won't last forever.
I know, I know. I'm whining and I'm selfish about the whole thing. It should be all about Mom. But I've been depressed and teary-eyed the whole week, even at work. I won't lie - it's been very rough.
During one of her more lucid moments she looked at me and said, "I don't want to live like this. I can't do anything anymore. I can't cook, I can't play with the grandchildren, I can't drive, I can't walk, I can't even get out of bed by myself. I have to be cleaned up because I can't even use the bathroom by myself, and that's humiliating. I don't want to live this way."
And then she went back to the crazy.
Today Sis and I handled some banking issues for Mom, then went to see what was in her safety deposit box. There were the normal Certificates of Deposit, IRAs, annuities, birth certificates, marriage license, papers on the house, etc. But there was something else as well.
There were signed and addressed cards and gifts for the remaining three grandchildren who have not yet graduated from high school, waiting and ready for them. All three of them. One will graduate in May, one in 2010, and one in 2012.
And I cried again.
After the banking we went to her house and cleaned out the freezer. We split up everything as evenly as we could, leaving some of it for later. Even at that we both have enough food to feed our families for at least the next three months without ever leaving the house.
Even when she's disabled she's still providing for her family.
The canned goods will be next. We figure we can pretty much go at it week by week and get most of the house closed down except for what she needs while she's there. I have a call in to Hospice for a Monday meeting, and I'm sure we'll be talking with Doc again about what to expect and when.
Letting go is hard. It hurts your heart.
But it will be alright. It's going to get better. This won't last forever.
She was in bed and being fed through her tube when I went in, and she'd been crying. She told me she missed me so much while I was gone because she gets very lonely when no one is there with her. Even though she'd had more visitors in the time I'd been gone since she'd had when I was there.
And she wept even more.
Then she went through her litany of delusions. How Sis was sitting over there and wouldn't wake up no matter how loud she yelled. (Sis was not there.) How Dad wouldn't wake up either, even though he was next to her in the bed. (Obviously untrue.) How both her doctors had been in a car wreck and were in therapy with her yesterday. How she couldn't understand why we weren't more excited about winning the lottery and why we hadn't cashed in the ticket yet. How people who hadn't been there had been there, and about how much pain she was in.
Then I tried to talk to her about other things. I told her about my trip, about the funeral, the flowers, the music. When I started to talk to her about how my aunt's death hurt so very much, she started her litany over again.
I think it was then I realized that this person is no longer anything like the mother I knew and loved.
It's not that I don't love her still - I most definitely do. But the mother I knew would comfort me through her pain. And I think that's what I miss the most.
Mom telling me everything's going to be alright. Everything's going to get better. That this won't last forever.
I know, I know. I'm whining and I'm selfish about the whole thing. It should be all about Mom. But I've been depressed and teary-eyed the whole week, even at work. I won't lie - it's been very rough.
During one of her more lucid moments she looked at me and said, "I don't want to live like this. I can't do anything anymore. I can't cook, I can't play with the grandchildren, I can't drive, I can't walk, I can't even get out of bed by myself. I have to be cleaned up because I can't even use the bathroom by myself, and that's humiliating. I don't want to live this way."
And then she went back to the crazy.
Today Sis and I handled some banking issues for Mom, then went to see what was in her safety deposit box. There were the normal Certificates of Deposit, IRAs, annuities, birth certificates, marriage license, papers on the house, etc. But there was something else as well.
There were signed and addressed cards and gifts for the remaining three grandchildren who have not yet graduated from high school, waiting and ready for them. All three of them. One will graduate in May, one in 2010, and one in 2012.
And I cried again.
After the banking we went to her house and cleaned out the freezer. We split up everything as evenly as we could, leaving some of it for later. Even at that we both have enough food to feed our families for at least the next three months without ever leaving the house.
Even when she's disabled she's still providing for her family.
The canned goods will be next. We figure we can pretty much go at it week by week and get most of the house closed down except for what she needs while she's there. I have a call in to Hospice for a Monday meeting, and I'm sure we'll be talking with Doc again about what to expect and when.
Letting go is hard. It hurts your heart.
But it will be alright. It's going to get better. This won't last forever.
Friday, October 17, 2008
Losing Ground
Mom is still bleeding.
I've been out of town for a few days to attend the funeral of a dear aunt. Yesterday was my first day back. Since it was Thursday and Sis usually goes to see Mom on Thursdays at the rehab center, I did something I can't remember doing in a long, long time.
I went to the grocery store.
We were out of everything, and I didn't even get all we really needed, but it will tide us over for a while. That and the dinners the church and good friends have been so kind to provide us should keep us eating.
When I got back there was a message from Sis. Mom's blood count has gone down from over 9 when she was released from the hospital Tuesday to just over 8 now. If she keeps going at this rate, she'll bleed out in less than two weeks.
I'm not ready. I can't handle that now. I need time. Time to adjust to the reality of what's happening. Time to get things ready for her at home. Time to talk to Hospice and to accept the inevitability of it all.
It's too soon.
Not that there would ever be a good time. But now isn't it.
So we'll wait a while until things can settle down. We'll get Hospice involved, and we'll keep her comfortable while we get the house ready. If she gets to the point where she needs it, we'll give her another transfusion. We'll talk to our pastors and get their opinion.
And eventually, we'll let her go.
I've been out of town for a few days to attend the funeral of a dear aunt. Yesterday was my first day back. Since it was Thursday and Sis usually goes to see Mom on Thursdays at the rehab center, I did something I can't remember doing in a long, long time.
I went to the grocery store.
We were out of everything, and I didn't even get all we really needed, but it will tide us over for a while. That and the dinners the church and good friends have been so kind to provide us should keep us eating.
When I got back there was a message from Sis. Mom's blood count has gone down from over 9 when she was released from the hospital Tuesday to just over 8 now. If she keeps going at this rate, she'll bleed out in less than two weeks.
I'm not ready. I can't handle that now. I need time. Time to adjust to the reality of what's happening. Time to get things ready for her at home. Time to talk to Hospice and to accept the inevitability of it all.
It's too soon.
Not that there would ever be a good time. But now isn't it.
So we'll wait a while until things can settle down. We'll get Hospice involved, and we'll keep her comfortable while we get the house ready. If she gets to the point where she needs it, we'll give her another transfusion. We'll talk to our pastors and get their opinion.
And eventually, we'll let her go.
Monday, October 13, 2008
Enough Is Enough
Today Sis and I spoke with Doc about letting Mom come home. Not just for a visit, but permanently.
But Doc doesn't seem ready to give up the fight yet.
He realizes she can no longer be on blood thinners. He also realizes that without blood thinners she will have clots. And so he talked us and Mom into putting a filter into her vein to stop the clot(s) from her leg from reaching her lungs.
Another procedure that she would not want if she were in her right mind. Another procedure that will cause more pain.
Yes, I should have spoken up and told him no. I should have said "ENOUGH!" But I didn't. And so she will have the procedure today, because she agreed to it.
But the blood thinners will stop. Permanently.
Mom will return to the rehab center for a period of time while we make arrangements with Hospice for her to come home. We have no idea how long she will last once she does come home, but we know this: She will be where she wants to be, with the people around her she loves and who love her.
We'll be meeting with Hospice either today or later this week to make arrangements. Prayers for peace over us as we deal with our decision and peace for Mom would be appreciated.
Because enough is enough.
But Doc doesn't seem ready to give up the fight yet.
He realizes she can no longer be on blood thinners. He also realizes that without blood thinners she will have clots. And so he talked us and Mom into putting a filter into her vein to stop the clot(s) from her leg from reaching her lungs.
Another procedure that she would not want if she were in her right mind. Another procedure that will cause more pain.
Yes, I should have spoken up and told him no. I should have said "ENOUGH!" But I didn't. And so she will have the procedure today, because she agreed to it.
But the blood thinners will stop. Permanently.
Mom will return to the rehab center for a period of time while we make arrangements with Hospice for her to come home. We have no idea how long she will last once she does come home, but we know this: She will be where she wants to be, with the people around her she loves and who love her.
We'll be meeting with Hospice either today or later this week to make arrangements. Prayers for peace over us as we deal with our decision and peace for Mom would be appreciated.
Because enough is enough.
Saturday, October 11, 2008
A Short-Lived Stay
Mom is back in the hospital again.
I know, you thought she was just discharged last Thursday. She was. However, she was discharged on Coumadin. And we all know what that means.
An ambulance brought her back today due to bright red blood mixed with her stool. She was bleeding out again from her intestinal tract. Even with a transfusion just before she left the hospital on Thursday, her hemoglobin was at 7 today.
They gave her more blood and topped it off with plasma. She's been in pain due to her legs and feet cramping up. Her dementia is still bad - worse than it's been. They stopped the Coumadin in order to stop the bleeding.
For now.
Sis and I have some difficult decisions to make in the next few days.
I'm praying we're up to the task.
I know, you thought she was just discharged last Thursday. She was. However, she was discharged on Coumadin. And we all know what that means.
An ambulance brought her back today due to bright red blood mixed with her stool. She was bleeding out again from her intestinal tract. Even with a transfusion just before she left the hospital on Thursday, her hemoglobin was at 7 today.
They gave her more blood and topped it off with plasma. She's been in pain due to her legs and feet cramping up. Her dementia is still bad - worse than it's been. They stopped the Coumadin in order to stop the bleeding.
For now.
Sis and I have some difficult decisions to make in the next few days.
I'm praying we're up to the task.
Friday, October 10, 2008
Meanwhile, Back At The Ranch...
Mom is now back at the rehab center.
She had a booster of packed red blood cells before she left the hospital, and hopefully that will last a while. Her hemoglobin was down to 8.7 when they decided to give this to her. She looks tired. She's worn out and weak from the hospital stay.
Until the nutritionist at the rehab center comes in to evaluate her she will be on 24-hour tube feedings. They hope to give bolus feedings during the day so that she'll be able to participate in rehab, then put her back on the feeding pump at night for extra nutrition. In the meantime, the speech therapist will be working with her in an attempt to regain her capability to swallow.
Now we have to figure out what the next step is. Do we leave her on the blood thinners knowing she'll bleed out and have to have transfusions time after time, or do we stop the blood thinners and risk another huge clot? Where do we put her when her now 38 days run out?
These are all questions Sis and I will have to discuss with Mom. We need for this whole situation to be settled...not so up in the air all the time. We need to know what to expect and when. We need to know Mom is getting the best care possible, wherever that is.
And we hope the answers come soon.
She had a booster of packed red blood cells before she left the hospital, and hopefully that will last a while. Her hemoglobin was down to 8.7 when they decided to give this to her. She looks tired. She's worn out and weak from the hospital stay.
Until the nutritionist at the rehab center comes in to evaluate her she will be on 24-hour tube feedings. They hope to give bolus feedings during the day so that she'll be able to participate in rehab, then put her back on the feeding pump at night for extra nutrition. In the meantime, the speech therapist will be working with her in an attempt to regain her capability to swallow.
Now we have to figure out what the next step is. Do we leave her on the blood thinners knowing she'll bleed out and have to have transfusions time after time, or do we stop the blood thinners and risk another huge clot? Where do we put her when her now 38 days run out?
These are all questions Sis and I will have to discuss with Mom. We need for this whole situation to be settled...not so up in the air all the time. We need to know what to expect and when. We need to know Mom is getting the best care possible, wherever that is.
And we hope the answers come soon.
Wednesday, October 8, 2008
And So We Begin Again
Mom was supposed to get out of the hospital today.
I say "supposed to" because there was another glitch. Her blood count is down to a little over 8 from over 10 yesterday.
Sigh.
What this means is she'll likely have to have another transfusion in the next day or so. Her leg is still bothering her and is very swollen, so we know the clot hasn't dissolved. Not that we'd expect it to in such a short time.
It would just be nice if she could catch a break once in a while.
I say "supposed to" because there was another glitch. Her blood count is down to a little over 8 from over 10 yesterday.
Sigh.
What this means is she'll likely have to have another transfusion in the next day or so. Her leg is still bothering her and is very swollen, so we know the clot hasn't dissolved. Not that we'd expect it to in such a short time.
It would just be nice if she could catch a break once in a while.
Tuesday, October 7, 2008
You Can't Win If You Don't Play
Mom has apparently won the lottery.
She told us so today.
She said she's been praying and praying for a way to pay for college for all five grandchildren, and today when she checked her ticket against the numbers in the newspaper, it happened. She couldn't believe it, so she checked it twice.
She won $32,000. Enough to pay for all the grandchildren's education, she said.
I only wish it was true.
Not only that she won the lottery, but that $32,000 would pay for all five to go all the way through school. She even wanted to pay off DIL's medical school bills, but didn't think she had enough for that.
Mom is a giver, and that's for certain. Even in her present state she thinks of everyone but herself. Even in her dreams.
She'll be released from the hospital tomorrow after almost eleven days' stay this time. Her feeding is going well and her pain is under control. The clot is still a danger, but she'll be on blood thinners until it doesn't pose such a threat. We can only hope and pray she doesn't have to come back to the hospital for more transfusions until the clot is history, but we know that's unlikely.
We're not exactly sure how much more time she has in rehab before she has to go on Medicare's Part B. We'll have to check with the rehab center to see. Right now we don't have a place for her other than the nursing home attached to the rehab center. While that is an option, it is also at least a twenty minute drive. That may not seem like it's so far away, but it really gets tiresome day after day.
I'll be looking at another place closer to home this week. I spoke with the social worker there today, and now all I have to do is find the time to go there. Sis is more inclined to leave Mom where she is so that she can work with the same doctors and therapists she's become used to. However, winter is coming. I'd feel better if we had Mom closer to home. It's something we need to decide together soon.
The main thing is that Mom is very well cared for and as happy as she can be in the situation and place where she lives. We can work out all the rest of it as it comes.
She told us so today.
She said she's been praying and praying for a way to pay for college for all five grandchildren, and today when she checked her ticket against the numbers in the newspaper, it happened. She couldn't believe it, so she checked it twice.
She won $32,000. Enough to pay for all the grandchildren's education, she said.
I only wish it was true.
Not only that she won the lottery, but that $32,000 would pay for all five to go all the way through school. She even wanted to pay off DIL's medical school bills, but didn't think she had enough for that.
Mom is a giver, and that's for certain. Even in her present state she thinks of everyone but herself. Even in her dreams.
She'll be released from the hospital tomorrow after almost eleven days' stay this time. Her feeding is going well and her pain is under control. The clot is still a danger, but she'll be on blood thinners until it doesn't pose such a threat. We can only hope and pray she doesn't have to come back to the hospital for more transfusions until the clot is history, but we know that's unlikely.
We're not exactly sure how much more time she has in rehab before she has to go on Medicare's Part B. We'll have to check with the rehab center to see. Right now we don't have a place for her other than the nursing home attached to the rehab center. While that is an option, it is also at least a twenty minute drive. That may not seem like it's so far away, but it really gets tiresome day after day.
I'll be looking at another place closer to home this week. I spoke with the social worker there today, and now all I have to do is find the time to go there. Sis is more inclined to leave Mom where she is so that she can work with the same doctors and therapists she's become used to. However, winter is coming. I'd feel better if we had Mom closer to home. It's something we need to decide together soon.
The main thing is that Mom is very well cared for and as happy as she can be in the situation and place where she lives. We can work out all the rest of it as it comes.
Saturday, October 4, 2008
Watching And Waiting
I've been worried about Mom all day.
The tube is working well and they have begun feeding her through it, but she's having a hard time tolerating the pain she feels from the procedure to put it in. Since her pain tolerance is zero, even a little puts her over the top. The nurses have been good about pain meds, but understandably don't want to use them too much. Morphine can cause constipation, yet without it her blood pressure rises due to the pain. It's a fine line to walk.
Possibly because of the morphine or the dilantin or a host of other reasons, Mom has been having problems with strange dreams. She wakes up in the middle of them, thinking they're real. She's also having problems with repeating the same thing over and over and over. It's as if she gets stuck on a thought, like a scratch on a record, and can't get past it.
That last remark was for those of you who actually REMEMBER records and record players.
She also has a place on her lip that has caused her whole lower lip to swell to about twice the normal size. It was thought she might be allergic to some medication she was getting, so the doctor prescribed Benedryl for her.
It was a gift from God.
It did nothing for the swelling, but it knocked her out enough to where she could sleep. When we left at 10 p.m. she was out like a light, and had been for several hours.
Why were we there so late? Because we had other news today as well.
Mom has a blood clot.
Her left leg has been swelling abnormally. We mentioned it to the nurses a couple of times, but they always said it was because she wasn't getting good circulation due to being in bed all the time. They put the "squeezy thingies" on her legs to encourage circulation and left it at that. Yesterday I brought it to their attention again because the squeezy thingies were so tight on her left leg. It had swollen more. They removed the squeezy thingies to let her legs rest for a while, and put them back on later.
Then today the physical therapist came in. She was moving Mom's legs to keep them from stiffening up, and commented on the size of her left leg. She got the nurse to look at it and they both poked around it for a while. The nurse called Doc, who ordered a sonogram of the leg, and the clot was found.
It's in her thigh, and it's huge. It's long. Sis was there for the sonogram and told me it reached at least half of her thigh and maybe more. She now has to have blood thinners to let the blood in her leg circulate, which brings us full circle. If she has blood thinners she has gastric bleeds. If she doesn't, she has clots. Clots are life-threatening. Bleeding is life-threatening.
In other words, we're damned if we do and damned if we don't.
In the meantime, there's always a chance that part of the clot will break off and cause even more problems. So because I was worried, I went back to the hospital around 5:30 p.m., and Sis and I stayed there together until 10 p.m.
We trust that she's in His care, no matter what happens.
He can take the night watch. We'll be back tomorrow.
The tube is working well and they have begun feeding her through it, but she's having a hard time tolerating the pain she feels from the procedure to put it in. Since her pain tolerance is zero, even a little puts her over the top. The nurses have been good about pain meds, but understandably don't want to use them too much. Morphine can cause constipation, yet without it her blood pressure rises due to the pain. It's a fine line to walk.
Possibly because of the morphine or the dilantin or a host of other reasons, Mom has been having problems with strange dreams. She wakes up in the middle of them, thinking they're real. She's also having problems with repeating the same thing over and over and over. It's as if she gets stuck on a thought, like a scratch on a record, and can't get past it.
That last remark was for those of you who actually REMEMBER records and record players.
She also has a place on her lip that has caused her whole lower lip to swell to about twice the normal size. It was thought she might be allergic to some medication she was getting, so the doctor prescribed Benedryl for her.
It was a gift from God.
It did nothing for the swelling, but it knocked her out enough to where she could sleep. When we left at 10 p.m. she was out like a light, and had been for several hours.
Why were we there so late? Because we had other news today as well.
Mom has a blood clot.
Her left leg has been swelling abnormally. We mentioned it to the nurses a couple of times, but they always said it was because she wasn't getting good circulation due to being in bed all the time. They put the "squeezy thingies" on her legs to encourage circulation and left it at that. Yesterday I brought it to their attention again because the squeezy thingies were so tight on her left leg. It had swollen more. They removed the squeezy thingies to let her legs rest for a while, and put them back on later.
Then today the physical therapist came in. She was moving Mom's legs to keep them from stiffening up, and commented on the size of her left leg. She got the nurse to look at it and they both poked around it for a while. The nurse called Doc, who ordered a sonogram of the leg, and the clot was found.
It's in her thigh, and it's huge. It's long. Sis was there for the sonogram and told me it reached at least half of her thigh and maybe more. She now has to have blood thinners to let the blood in her leg circulate, which brings us full circle. If she has blood thinners she has gastric bleeds. If she doesn't, she has clots. Clots are life-threatening. Bleeding is life-threatening.
In other words, we're damned if we do and damned if we don't.
In the meantime, there's always a chance that part of the clot will break off and cause even more problems. So because I was worried, I went back to the hospital around 5:30 p.m., and Sis and I stayed there together until 10 p.m.
We trust that she's in His care, no matter what happens.
He can take the night watch. We'll be back tomorrow.
Friday, October 3, 2008
The IV League
Oh yes.
The title is courtesy of Sis, because that's what she spouted when she found out Mom now has two new IVs in her right arm rather than one in each arm. I was leaning toward "Because God Made The IV Line" (think old songs) but I'll save that one for later.
Because I'm sure we'll need it.
Mom's feeding tube is now in place. They are testing it today with water, and will begin feedings tomorrow, gradually building up the amount she gets hour by hour. Unfortunately, the GI department didn't call her down to have it put in until noon, then we had to wait even longer for them to take her back and actually do the procedure. I offered to stay today since Sis has missed more work than I have, so she wasn't there when we got back to the room around 3 p.m. She came by after work, after I'd already seen and gotten used to the look of the site and the tube.
When Sis first got a look at it, she said something akin to "Gee Mom, it looks like you're inflatable now..."
We were having one of those days.
Sis and I laugh. It's really what we do best together, other than take care of Mom. And we laugh at inside jokes, at quirks we both have, and with Mom. She's where we got our sense of humor.
As the nurse was working with Mom and listening to us giggle tonight, she told us how close she is with her sister. How they finish each other's sentences, how they are each other's best friend, how they can blow off steam with each other, how they love to do things together. Sis and I looked at each other and laughed some more.
"Yeah, NOT us at ALL," I said.
Thankfully, the nurse didn't take offense or order enemas for both of us. Although, come to think of it, it might have been funnier if she had.
She didn't realize how very different the two of us are. I like to think she couldn't see the differences because we work so well TOGETHER taking care of Mom. We both have the same heart in that regard. We both love Mom and want the best possible for her in all things.
And in my book, that makes us IV League as well.
The title is courtesy of Sis, because that's what she spouted when she found out Mom now has two new IVs in her right arm rather than one in each arm. I was leaning toward "Because God Made The IV Line" (think old songs) but I'll save that one for later.
Because I'm sure we'll need it.
Mom's feeding tube is now in place. They are testing it today with water, and will begin feedings tomorrow, gradually building up the amount she gets hour by hour. Unfortunately, the GI department didn't call her down to have it put in until noon, then we had to wait even longer for them to take her back and actually do the procedure. I offered to stay today since Sis has missed more work than I have, so she wasn't there when we got back to the room around 3 p.m. She came by after work, after I'd already seen and gotten used to the look of the site and the tube.
When Sis first got a look at it, she said something akin to "Gee Mom, it looks like you're inflatable now..."
We were having one of those days.
Sis and I laugh. It's really what we do best together, other than take care of Mom. And we laugh at inside jokes, at quirks we both have, and with Mom. She's where we got our sense of humor.
As the nurse was working with Mom and listening to us giggle tonight, she told us how close she is with her sister. How they finish each other's sentences, how they are each other's best friend, how they can blow off steam with each other, how they love to do things together. Sis and I looked at each other and laughed some more.
"Yeah, NOT us at ALL," I said.
Thankfully, the nurse didn't take offense or order enemas for both of us. Although, come to think of it, it might have been funnier if she had.
She didn't realize how very different the two of us are. I like to think she couldn't see the differences because we work so well TOGETHER taking care of Mom. We both have the same heart in that regard. We both love Mom and want the best possible for her in all things.
And in my book, that makes us IV League as well.
Thursday, October 2, 2008
A Hard Day's Night
Mom had a hard time sleeping last night because they chose the nighttime to run potassium again. If you've ever had potassium through an IV or know anyone who has, you know it stings like crazy the whole time it's going in, unless it goes in a PICC line. Since Mom doesn't have one of those this time, she got very little rest.
And since she got very little rest, she made up for it today.
She had a bad headache today along with various other aches, so the nurse was kind enough to give her some pain medicine. It worked so well that she slept until around 5 p.m., then woke up with the headache still there. More pain meds, and she was out until after I left the hospital.
Since she did not have the feeding tube placed today it will be placed early tomorrow morning. At least we hope it will be early, so Sis and I can see her through it before we go to work and then check in on her later. That will mean showing up at the crack of dawn to wait to be called.
Fun times.
At least Mom will be able to get nutrition instead of the PPN she's getting now. The poor woman has an IV in each arm, and it's hard for her to do much of anything without getting tangled up in tubing.
The neurologist said it may be a day or so before they try it out for medications and another day before they try it out for feeding. It will depend on what the GI doctor says. We're hoping everything will be smooth sailing and there will be no worries.
It would be a nice change of pace.
And since she got very little rest, she made up for it today.
She had a bad headache today along with various other aches, so the nurse was kind enough to give her some pain medicine. It worked so well that she slept until around 5 p.m., then woke up with the headache still there. More pain meds, and she was out until after I left the hospital.
Since she did not have the feeding tube placed today it will be placed early tomorrow morning. At least we hope it will be early, so Sis and I can see her through it before we go to work and then check in on her later. That will mean showing up at the crack of dawn to wait to be called.
Fun times.
At least Mom will be able to get nutrition instead of the PPN she's getting now. The poor woman has an IV in each arm, and it's hard for her to do much of anything without getting tangled up in tubing.
The neurologist said it may be a day or so before they try it out for medications and another day before they try it out for feeding. It will depend on what the GI doctor says. We're hoping everything will be smooth sailing and there will be no worries.
It would be a nice change of pace.
Wednesday, October 1, 2008
Down The Tube
Mom is having a feeding tube inserted tomorrow.
Doc talked with her about it, but she didn't seem too keen on the idea. Then the GI doctor came in while one of her friends was there visiting. He explained the procedure and told her it would not be as painful as the carotid surgery was. When she still balked at the idea, her friend stepped in and told her she had to do it because she'd starve to death otherwise.
So Mom agreed. It was as simple as that.
The neurologist stopped in this afternoon while Sis and I were both there. The MRI came back and we were extremely happy to hear that she did NOT suffer her second stroke. It seems the problems she's been having with staying awake are due to the anti-seizure medication, which was too highly concentrated in her body. The medication was stopped for today and they will do another test tomorrow to see what the level is before they begin it again at a lower dosage. He also seemed confident that she would be able to re-learn how to swallow, and that the feeding tube would be temporary.
I wish I was that confident.
The medication is also one of the reasons she has been so wacky lately, other than the fact that she's just getting over two seizures. The dementia is much worse than before. Today she was worried about not having dinner ready for her Bunco group tonight, and had to be told over and over that it was being taken care of by someone else. She had bread in the oven that needed taking out. She cooked a roast beef dinner, but didn't have time to make hot rolls. And she was bound and determined that there was a pair of scissors in her bed that I could use to cut off her identification wristband.
She is very restless, pulling her covers off almost as soon as they're straightened. Then she complains she's cold, so the covers are put on again. Then she complains she's hot, so off they come. It's an endless cycle. She wants things moved to the closet, then wants them back on the shelf. She keeps trying to remove the protective padding over the rails on her bed until she is told why it's there. Then she leaves it alone until the next round.
My hopes are not high that this part will improve. We've been disappointed in this area too many times for me to hope again, so I'll just accept what comes along.
Doc talked with her about it, but she didn't seem too keen on the idea. Then the GI doctor came in while one of her friends was there visiting. He explained the procedure and told her it would not be as painful as the carotid surgery was. When she still balked at the idea, her friend stepped in and told her she had to do it because she'd starve to death otherwise.
So Mom agreed. It was as simple as that.
The neurologist stopped in this afternoon while Sis and I were both there. The MRI came back and we were extremely happy to hear that she did NOT suffer her second stroke. It seems the problems she's been having with staying awake are due to the anti-seizure medication, which was too highly concentrated in her body. The medication was stopped for today and they will do another test tomorrow to see what the level is before they begin it again at a lower dosage. He also seemed confident that she would be able to re-learn how to swallow, and that the feeding tube would be temporary.
I wish I was that confident.
The medication is also one of the reasons she has been so wacky lately, other than the fact that she's just getting over two seizures. The dementia is much worse than before. Today she was worried about not having dinner ready for her Bunco group tonight, and had to be told over and over that it was being taken care of by someone else. She had bread in the oven that needed taking out. She cooked a roast beef dinner, but didn't have time to make hot rolls. And she was bound and determined that there was a pair of scissors in her bed that I could use to cut off her identification wristband.
She is very restless, pulling her covers off almost as soon as they're straightened. Then she complains she's cold, so the covers are put on again. Then she complains she's hot, so off they come. It's an endless cycle. She wants things moved to the closet, then wants them back on the shelf. She keeps trying to remove the protective padding over the rails on her bed until she is told why it's there. Then she leaves it alone until the next round.
My hopes are not high that this part will improve. We've been disappointed in this area too many times for me to hope again, so I'll just accept what comes along.
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