Saturday, February 28, 2009
Truth
It has been a little over 24 hours since my dad came home. I am overwhelmed. I feel unprepared and disorganized. I'm tired (already) and want to take a nap. There is stuff all over the place that needs to get arranged, organized, and read. My dad seems to be doing ok. I, on the other hand, need a little help. Here's hoping that feelings of preparedness, organization, and competence come knocking on my door. Soon.
Thursday, February 26, 2009
The 4th time's the charm!
When I went to check in on my dad this evening, I was so pleased to see that they had gotten the catheter in! Yeah! It was their 4th attempt, this time with a pediatric end. I bless them for trying again. I know it's not easy with my dad yelling and screaming at them. But hooray! This will make it easier to keep him clean, keep track of urinary output, and minimize the times when we make him hurt so bad.
It's a go for tomorrow. His room is all ready with a hospital bed and table. All the other supplies will be accompanied by the hospice nurse when she comes in the afternoon.
My dad is not on the oxygen anymore, but he is receiving breathing treatments every 6 hours. He's got an air filled topper to his mattress that changes the pressure areas every few minutes, so hopefully, that will help to keep his skin intact. Morphine is given every 6 hours, and more right before he is cleaned up. I hate Morphine. That look on his face tonight looked just like my mom's right before she died. He's looking off into outer space. Even when I put my face right in front of him and talked, there was no change in his expression. It's sad. I wrapped my arms around that bald head of his and told him that I loved him. He said, "I know you do." I'm glad about that.
I don't know how long my dad will be with us. That includes both at my house or elsewhere, or even on this earth of ours. But I am very grateful that I have been able to help him through this time. I have always wanted my dad to be proud of me. He always showed that to me when I was a child, teen, and adult. I know he would be proud of me now. Although he would hate that he is like he is and staying with me. But for now, I can't have it any other way.
It's a go for tomorrow. His room is all ready with a hospital bed and table. All the other supplies will be accompanied by the hospice nurse when she comes in the afternoon.
My dad is not on the oxygen anymore, but he is receiving breathing treatments every 6 hours. He's got an air filled topper to his mattress that changes the pressure areas every few minutes, so hopefully, that will help to keep his skin intact. Morphine is given every 6 hours, and more right before he is cleaned up. I hate Morphine. That look on his face tonight looked just like my mom's right before she died. He's looking off into outer space. Even when I put my face right in front of him and talked, there was no change in his expression. It's sad. I wrapped my arms around that bald head of his and told him that I loved him. He said, "I know you do." I'm glad about that.
I don't know how long my dad will be with us. That includes both at my house or elsewhere, or even on this earth of ours. But I am very grateful that I have been able to help him through this time. I have always wanted my dad to be proud of me. He always showed that to me when I was a child, teen, and adult. I know he would be proud of me now. Although he would hate that he is like he is and staying with me. But for now, I can't have it any other way.
Tuesday, February 24, 2009
ready, set, it's almost time
Things I have done or am doing since my dad has been at the hospice house:
1. I have gone to see him everyday. I have been going in the evenings, at dinner time, so that I can help him/encourage him to eat his meal. This evening, he was unable to feed himself. :( Too tired? Forgot how to? So I fed him.
2. I went and saw another hospice home and instead of red flags, this time, I got warm fuzzies. They do not have an opening at this moment, but will call me when they do have one. I'll deal with that when it happens.
3. I participated in discharge planning with the nurse and the social worker. My dad will be coming back to our home on Friday. A hospital bed and one of those mobile tables will be delivered tomorrow.
4. In preparation for the bed's arrival, all the stuff in my dad's room was removed. His carpeting has been shampooed. This evening. By me.
5. In my head, I am thinking of all the stuff we will be needing. I better write it down so I won't forget to get it all from Hospice when they come on Friday.
6. I am fighting a cold, cough, achy body. I just took NyQuil and decided to blog before it knocks me out.
I told Tom that I hate having my dad take Morphine. He was sleeping almost all the time before he started taking it, and he continues to sleep almost all the time. It's just that now when he does awaken, he doesn't look the same. He looks at me, but he's not in there. I hate it. But the alternative to the morphine is pain. And I won't have that for my dad. Who would have thought that rolling would make one scream? And when he is getting cleaned up, wow - I have to get far away from his room so I don't hear it. They have recently started to give him extra morphine about a 1/2 hour before they clean him up, and that reportedly is working. I was able to be outside the room last night and this evening. With his yuck I have, I have only stayed a half hour the last few days. I cannot risk him getting this so I stay away as much as I can. I probably shouldn't go at all, I know. It is selfish of me to go when I am sick.
Anyway...2 1/2 more days and he'll be back. I am praying for strength and continued patience. And I must say, it will be so nice to have him here again.
1. I have gone to see him everyday. I have been going in the evenings, at dinner time, so that I can help him/encourage him to eat his meal. This evening, he was unable to feed himself. :( Too tired? Forgot how to? So I fed him.
2. I went and saw another hospice home and instead of red flags, this time, I got warm fuzzies. They do not have an opening at this moment, but will call me when they do have one. I'll deal with that when it happens.
3. I participated in discharge planning with the nurse and the social worker. My dad will be coming back to our home on Friday. A hospital bed and one of those mobile tables will be delivered tomorrow.
4. In preparation for the bed's arrival, all the stuff in my dad's room was removed. His carpeting has been shampooed. This evening. By me.
5. In my head, I am thinking of all the stuff we will be needing. I better write it down so I won't forget to get it all from Hospice when they come on Friday.
6. I am fighting a cold, cough, achy body. I just took NyQuil and decided to blog before it knocks me out.
I told Tom that I hate having my dad take Morphine. He was sleeping almost all the time before he started taking it, and he continues to sleep almost all the time. It's just that now when he does awaken, he doesn't look the same. He looks at me, but he's not in there. I hate it. But the alternative to the morphine is pain. And I won't have that for my dad. Who would have thought that rolling would make one scream? And when he is getting cleaned up, wow - I have to get far away from his room so I don't hear it. They have recently started to give him extra morphine about a 1/2 hour before they clean him up, and that reportedly is working. I was able to be outside the room last night and this evening. With his yuck I have, I have only stayed a half hour the last few days. I cannot risk him getting this so I stay away as much as I can. I probably shouldn't go at all, I know. It is selfish of me to go when I am sick.
Anyway...2 1/2 more days and he'll be back. I am praying for strength and continued patience. And I must say, it will be so nice to have him here again.
Sunday, February 22, 2009
In a quandry...
This has been quite a busy week for me. Keeping up with stuff, and monitoring my dad while he is at the Dobson House has consumed my days. I have met with the doctor twice, and find her to be a very caring woman who not only wants the best for my dad, but listens to me too. He is on oxygen, and takes regular breathing treatments. He has not been out of bed the last 4 days, except for sitting on the side of the bed to eat his lunch while I was there on Wednesday. He is still swollen, but the diuretics appears to be working. When he is lying down, his legs are less swollen, but when he got up (sitting on the side), within 45 minutes they were huge and hard again. The increase in urine has irritated his skin and he has a large, sensitive rash in that area, in addition to a gross amount of swelling. Cleaning him has been painful, to the point where I have had to go to the end of the hall or outside because I can't tolerate the yelling from him. He is getting regular low doses of morphine, which seems to help a bit with that pain, but makes him groggy. He has been very cooperative with the staff through all the things they have had to do for him, to him. He thanks them (for putting him in pain!) He eats most of his breakfast and lunch, and I coax him to eat more of his dinner than he would have if I wasn't there. And he sleeps.
He has been there one week today, and I do not know what I am going to do when he is discharged. Yesterday I went and looked at a hospice home about a mile from here, but I was not impressed with the answers I got to my questions. Not at all. I am going to see another one this morning. Having my dad go live somewhere else, having someone else care for him is not a pleasant thing for me to think about. And I am not sure I want to do that. Having him live with us again, and all that entails, is overwhelming to think about. I have been told that I am not super woman. I know that. But I do know that I am a loving daughter and I will do what I think is the best for my dad. That one hospice home would not be the best for him. I'm not closed to the idea of him being somewhere else, not at all. I have to find a home that I feel 100% comfortable with leaving his care to them.
To be at my house, we'd need a hospital bed, wheel chair, maybe a hoyer lift (a sling that has a pneumatic lifting device). We'd need all the equipment that we already have, but may not be able to use it because my dad can't get out of bed. I can get him up to sitting on the side of the bed, but as of Friday, I could not get him to stand. He's dead weight and couldn't help enough for that. If here, his regular care giver, who is very willing to extend her hours and do whatever is needed, and I would be responsible for the worst job - that of changing his diaper - I hate that word for him. But it is what it is. I have done it before, and I think I can do it regularly. I would not like it, I do not want to do it, but I can. I think. I hope. We would still get hospice services, including a weekly visit from a nurse and an aid that would give him bed baths and I don't know what else. The staff at the Dobson House tried unsuccessfully to put a catheter in my dad. They couldn't get it in. :( They are going to try to get another piece that they are out of as of yesterday, and try again. I'm thinking that would be a good thing. He would be able to stay dry and hopefully, that would help heal that painful rash he has. And it would be less mess at home.
This care giving has been quite an undertaking, and still is. I have been reminded that I have to do what is best for my dad, and not just make a decision that is best for me. It just seems that either way, I lose. If he's away, I will continue to visit, worry, and fret. If he is here, it is more of a demand on me and my husband. He says he will support my decision either way. And I know I can change my mind if either doesn't work out. I just wish there was a manual on this.
He has been there one week today, and I do not know what I am going to do when he is discharged. Yesterday I went and looked at a hospice home about a mile from here, but I was not impressed with the answers I got to my questions. Not at all. I am going to see another one this morning. Having my dad go live somewhere else, having someone else care for him is not a pleasant thing for me to think about. And I am not sure I want to do that. Having him live with us again, and all that entails, is overwhelming to think about. I have been told that I am not super woman. I know that. But I do know that I am a loving daughter and I will do what I think is the best for my dad. That one hospice home would not be the best for him. I'm not closed to the idea of him being somewhere else, not at all. I have to find a home that I feel 100% comfortable with leaving his care to them.
To be at my house, we'd need a hospital bed, wheel chair, maybe a hoyer lift (a sling that has a pneumatic lifting device). We'd need all the equipment that we already have, but may not be able to use it because my dad can't get out of bed. I can get him up to sitting on the side of the bed, but as of Friday, I could not get him to stand. He's dead weight and couldn't help enough for that. If here, his regular care giver, who is very willing to extend her hours and do whatever is needed, and I would be responsible for the worst job - that of changing his diaper - I hate that word for him. But it is what it is. I have done it before, and I think I can do it regularly. I would not like it, I do not want to do it, but I can. I think. I hope. We would still get hospice services, including a weekly visit from a nurse and an aid that would give him bed baths and I don't know what else. The staff at the Dobson House tried unsuccessfully to put a catheter in my dad. They couldn't get it in. :( They are going to try to get another piece that they are out of as of yesterday, and try again. I'm thinking that would be a good thing. He would be able to stay dry and hopefully, that would help heal that painful rash he has. And it would be less mess at home.
This care giving has been quite an undertaking, and still is. I have been reminded that I have to do what is best for my dad, and not just make a decision that is best for me. It just seems that either way, I lose. If he's away, I will continue to visit, worry, and fret. If he is here, it is more of a demand on me and my husband. He says he will support my decision either way. And I know I can change my mind if either doesn't work out. I just wish there was a manual on this.
Tuesday, February 17, 2009
Update
My dad is now in a Hospice Center about 5 miles away. He had a real bad day on Sunday and I called the Hospice nurse. She was at our home within an hour, and after seeing him, recommended the center. He can only be there for a maximum of 2 weeks. She told me that she didn't know if he would be with us for that long. Of course, I agreed with her recommendation and he was taken there Sunday afternoon.
He is on oxygen, receiving breathing treatments, and taking diuretics for the swelling. Yesterday, from what I could tell, he was up for about 2 1/2 hours before he went back to sleep about 12:30 pm. I was there for breakfast and lunch, which he ate. I was told he ate about a 1/3 of his dinner. We went back over about 6 pm and he was already asleep for the night.
The doctor, nurse, social worker, medical student, physician's assistant and I were all in his room together after breakfast. After their assessment, it was said he was in respiratory distress possibly due to congestive heart failure - although his heart is beating regularly. Go figure. Tom and I have said that in order for him to come back to our home, he has to be able to be more mobile and we have to be able to get him up from a chair/bed - just one of us. For now, it takes 3 of them at the center to get him up. So the goal is to do that - get him more mobile - meaning getting him to be able to walk without so much distress. We're hoping that by getting rid of some of the fluid he is retaining, it will help his breathing and that will help with his mobility.
So in the meantime, we're taking it a day at a time. Our house is pretty quiet and it seems weird that he isn't here. I've had 2 really good night's sleep. I didn't work yesterday, but am going back to that routine today. We are going to have to start working on discharge planning because before we know it, the 2 weeks will be up. I know there are lots of things to think about, but for the past two days, I haven't done that. Maybe just a bit, but I keep putting it off. I guess I will have to start that process. My dad appears to be pretty comfortable. He is not getting up to use the bathroom anymore, so the stress on his system for that activity is gone. He knows he is not at my house (or somewhere) because he told me that he would "stay here awhile and get strong". He cordially spoke to the chaplain at the center and told him he was active at the parish down the road, Saint Roc's church (in Michigan). The chaplain is going to arrange for the priest from my parish to visit him and give him the sacrament of the sick. My dad told him "that would be lovely".
I would have had a real hard time making it through this past weekend without Hospice, my hubby, my friends Jean (who dashed over when called), Roxanne (who brought over a motorized lazy boy type chair that my dad used once), and Laura (my rock of a friend). Thanks!
He is on oxygen, receiving breathing treatments, and taking diuretics for the swelling. Yesterday, from what I could tell, he was up for about 2 1/2 hours before he went back to sleep about 12:30 pm. I was there for breakfast and lunch, which he ate. I was told he ate about a 1/3 of his dinner. We went back over about 6 pm and he was already asleep for the night.
The doctor, nurse, social worker, medical student, physician's assistant and I were all in his room together after breakfast. After their assessment, it was said he was in respiratory distress possibly due to congestive heart failure - although his heart is beating regularly. Go figure. Tom and I have said that in order for him to come back to our home, he has to be able to be more mobile and we have to be able to get him up from a chair/bed - just one of us. For now, it takes 3 of them at the center to get him up. So the goal is to do that - get him more mobile - meaning getting him to be able to walk without so much distress. We're hoping that by getting rid of some of the fluid he is retaining, it will help his breathing and that will help with his mobility.
So in the meantime, we're taking it a day at a time. Our house is pretty quiet and it seems weird that he isn't here. I've had 2 really good night's sleep. I didn't work yesterday, but am going back to that routine today. We are going to have to start working on discharge planning because before we know it, the 2 weeks will be up. I know there are lots of things to think about, but for the past two days, I haven't done that. Maybe just a bit, but I keep putting it off. I guess I will have to start that process. My dad appears to be pretty comfortable. He is not getting up to use the bathroom anymore, so the stress on his system for that activity is gone. He knows he is not at my house (or somewhere) because he told me that he would "stay here awhile and get strong". He cordially spoke to the chaplain at the center and told him he was active at the parish down the road, Saint Roc's church (in Michigan). The chaplain is going to arrange for the priest from my parish to visit him and give him the sacrament of the sick. My dad told him "that would be lovely".
I would have had a real hard time making it through this past weekend without Hospice, my hubby, my friends Jean (who dashed over when called), Roxanne (who brought over a motorized lazy boy type chair that my dad used once), and Laura (my rock of a friend). Thanks!
Saturday, February 14, 2009
A tentative sigh of relief
Thursday was a horrible day for me. I actually said out loud to my husband, "I don't think I can do this anymore." It choked me up saying it. And I felt horrible for saying it too.
I went to my support group on Thursday night (great timing!). I felt a little better when I left, after crying again and rambling on to them all. The facilitator of the group, Renee, said to me that she guaranteed that after Hospice came to my home, I would feel better because we would have a plan. Smart Renee.
Hospice came yesterday, and they came today too. I feel like I am not alone anymore in dealing with all the medical stuff. My dad is now off the service of his regular doctor, and under the care of the hospice doctor. I will not have to take him to the doctor anymore. A phone call is all it takes for help to call me or come knocking on my door. After their visit yesterday, the plan was for the nurse to come on Monday and start it all. But my dad had a really bad evening yesterday, and both Tom and I said we had never heard him breathe like that before. It was awful. So this morning, I called and left a message for the nurse to call me. She called within 10 minutes. I couldn't believe it. And within a few hours, another nurse came to our house. My dad's respiratory status continues to deteriorate and his breathing is very labored. So... within a few hours, the door bell rang. The medicine was delivered that would be used in a nebulizer. (It does the same thing as an inhaler, but my dad won't have to coordinate his breathing with medicine puffing into his system.) Then, the nebulizer and the oxygen were delivered. The guy spent about 30 minutes with Tom and me, and showed us how to use them both.
So tonight, my dad had 2 breathing treatments, and about 3 hours worth of oxygen before he went to bed. It was nice to have him up with us this evening, and he was laughing throughout the show we were watching. I feel like a novice with this equipment, but I know I will get better at it, and will figure out when the best time is for using it, frequency, and all that stuff. My dad was able to use his walker (a regular thing the past 2 days) and walk from the living room to his bedroom, with five 15 second breaks. It was slow, but he made it.
And.........I figured something out that really helped me. I have a very very very very very very hard time with the odor. You know the odor. That odor that goes along with cleaning up diarrhea and all. Well, I won't get into how I reached this discovery, but I do know that if I put gobs of Vick's Vapor Rub up my nose, I can clean it up without gagging (or more, which I've done). It may not be too glamorous looking, but it works!
So for now, I feel better equipped to handle this. I will take it a day at a time, know that I have options, if needed, and continue to be grateful that my dad is with us.
I went to my support group on Thursday night (great timing!). I felt a little better when I left, after crying again and rambling on to them all. The facilitator of the group, Renee, said to me that she guaranteed that after Hospice came to my home, I would feel better because we would have a plan. Smart Renee.
Hospice came yesterday, and they came today too. I feel like I am not alone anymore in dealing with all the medical stuff. My dad is now off the service of his regular doctor, and under the care of the hospice doctor. I will not have to take him to the doctor anymore. A phone call is all it takes for help to call me or come knocking on my door. After their visit yesterday, the plan was for the nurse to come on Monday and start it all. But my dad had a really bad evening yesterday, and both Tom and I said we had never heard him breathe like that before. It was awful. So this morning, I called and left a message for the nurse to call me. She called within 10 minutes. I couldn't believe it. And within a few hours, another nurse came to our house. My dad's respiratory status continues to deteriorate and his breathing is very labored. So... within a few hours, the door bell rang. The medicine was delivered that would be used in a nebulizer. (It does the same thing as an inhaler, but my dad won't have to coordinate his breathing with medicine puffing into his system.) Then, the nebulizer and the oxygen were delivered. The guy spent about 30 minutes with Tom and me, and showed us how to use them both.
So tonight, my dad had 2 breathing treatments, and about 3 hours worth of oxygen before he went to bed. It was nice to have him up with us this evening, and he was laughing throughout the show we were watching. I feel like a novice with this equipment, but I know I will get better at it, and will figure out when the best time is for using it, frequency, and all that stuff. My dad was able to use his walker (a regular thing the past 2 days) and walk from the living room to his bedroom, with five 15 second breaks. It was slow, but he made it.
And.........I figured something out that really helped me. I have a very very very very very very hard time with the odor. You know the odor. That odor that goes along with cleaning up diarrhea and all. Well, I won't get into how I reached this discovery, but I do know that if I put gobs of Vick's Vapor Rub up my nose, I can clean it up without gagging (or more, which I've done). It may not be too glamorous looking, but it works!
So for now, I feel better equipped to handle this. I will take it a day at a time, know that I have options, if needed, and continue to be grateful that my dad is with us.
Tuesday, February 10, 2009
Hospice is coming
Hospice will be coming on Friday to meet my dad and talk with me. We'll see what they have to offer to make this easier, if that is at all possible. I ended up calling Hospice of the Valley myself. Two days and 3 phone calls later, I still haven't gotten a call back from the doctor's office about this. Kind of disappointed in their follow up...
My dad is getting quieter and quieter. He talks more in his sleep than he does when he is awake. He still perks up when I ramble on about something, but never comments about anything. He's needing more and more help...getting up from a chair, walking, bathroom, dressing. Except for maybe a total of 3 hours during the day, he is sleeping. He is letting his caregiver help him in the bathroom, and even with showers. Tom is able to do things for him and he is always willing to accept that help. With me, especially in the bathroom, he is a bit more hesitant about accepting that help. Usually, he yells at me. But I get past that and do whatever it is I need to do anyway. ( The other day I thanked him for letting me boss him around. He grunted. Then I told him "paybacks are hell, huh?" He laughed.) He's not getting as much nutrition, either because he is sleeping more, doesn't eat as much, or throws it up. I don't know what that is all about. I'm going to change the way he gets his medicine, maybe not all at the same time. Perhaps that will help him with the gagging and vomiting.
Poor guy. I just feel so bad for him having to go through all this stuff. He would be miserable if he knew. Perhaps that's the one good thing about Alzheimer's? Or is it? We just don't know.
My dad is getting quieter and quieter. He talks more in his sleep than he does when he is awake. He still perks up when I ramble on about something, but never comments about anything. He's needing more and more help...getting up from a chair, walking, bathroom, dressing. Except for maybe a total of 3 hours during the day, he is sleeping. He is letting his caregiver help him in the bathroom, and even with showers. Tom is able to do things for him and he is always willing to accept that help. With me, especially in the bathroom, he is a bit more hesitant about accepting that help. Usually, he yells at me. But I get past that and do whatever it is I need to do anyway. ( The other day I thanked him for letting me boss him around. He grunted. Then I told him "paybacks are hell, huh?" He laughed.) He's not getting as much nutrition, either because he is sleeping more, doesn't eat as much, or throws it up. I don't know what that is all about. I'm going to change the way he gets his medicine, maybe not all at the same time. Perhaps that will help him with the gagging and vomiting.
Poor guy. I just feel so bad for him having to go through all this stuff. He would be miserable if he knew. Perhaps that's the one good thing about Alzheimer's? Or is it? We just don't know.
Friday, February 6, 2009
Changes
I'm having a hard time facing the facts. I keep expecting my dad to get back to himself. The "himself" of a few months ago. The "himself" of confusing thoughts, poor memory, a little agitation, and some incontinence. The "himself" who enjoyed my cooking, played some cards and boardgames, watched tv, yelled at the football games, and laughed whole heartedly at things on tv or things I would say to him. I would welcome him back, but memory difficulties continue to worsen. Awareness of his body is declining. I believe he has all the symptoms up to and including stage #6 in the stages of Alzheimer's Disease. #7 symptoms are emerging. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp#stage6
But even worse, if anything can be worse, is that of his physical decline. His breathing continues to be labored and he is very swollen. Walking a distance of 20 feet, using the bathroom, or taking a shower make him so tired that he can't keep his eyes open. It is a heart breaking thing for me to see. He got up about 10 today and had a big breakfast (banana/grapes, 3 eggs, ham, fried potatoes, english muffin). By the time he was finished with that at 11, it was back to bed. He got up about 3 and had a 1/2 sandwich and chips, let me cut his hair and shave him, and that wore him out. He needed to take a shower, or at least use the bathroom, but he refused to and went back to bed. I went in and woke him at 7. I scared the bejeebers out of him, despite my attempt not to do that. He asked where his mom was. I told him she was out, but Tom and I were going to help get him cleaned up. He seemed to accept that response. He had some trouble finding words, or maybe it is "labeling objects", and kept asking for his undershirt over and over and over. I figured out it was his bathrobe he wanted. Anyway, he let Tom ( not me) help him up and get him to the bathroom and into the shower to sit on the seat in there. We put in a hand held shower head this evening, and he used that, and allowed me to help him scrub (and tell him where to scrub). He let Tom help him to dry off and get on his underwear. He walked back to his room and was fast asleep after a quick snack and drink (served to him in bed). He is having to rely on more help with dressing and hygiene. He is very weak, and even fell today when going back to bed after lunch. Thank goodness my friend Laura had just dropped by! I needed her help and support. (thanks, Laura!)
So I am beginning to face the fact that we just might need Hospice. I don't think he is in pain. I think he is tired. I think he is tired of being tired. And I think that having some more help, although I don't know what they will do at this point, would be good. I'm hoping to make it through the weekend without too much guilt that I haven't done this earlier. But it is a real hard thing to do. And I will never stop hoping that tomorrow will be a better day than today. Each and every day I will will never stop hoping that. Like I said, facing the truth is really hard. But these changes the past few weeks...they are heartbreaking.
But even worse, if anything can be worse, is that of his physical decline. His breathing continues to be labored and he is very swollen. Walking a distance of 20 feet, using the bathroom, or taking a shower make him so tired that he can't keep his eyes open. It is a heart breaking thing for me to see. He got up about 10 today and had a big breakfast (banana/grapes, 3 eggs, ham, fried potatoes, english muffin). By the time he was finished with that at 11, it was back to bed. He got up about 3 and had a 1/2 sandwich and chips, let me cut his hair and shave him, and that wore him out. He needed to take a shower, or at least use the bathroom, but he refused to and went back to bed. I went in and woke him at 7. I scared the bejeebers out of him, despite my attempt not to do that. He asked where his mom was. I told him she was out, but Tom and I were going to help get him cleaned up. He seemed to accept that response. He had some trouble finding words, or maybe it is "labeling objects", and kept asking for his undershirt over and over and over. I figured out it was his bathrobe he wanted. Anyway, he let Tom ( not me) help him up and get him to the bathroom and into the shower to sit on the seat in there. We put in a hand held shower head this evening, and he used that, and allowed me to help him scrub (and tell him where to scrub). He let Tom help him to dry off and get on his underwear. He walked back to his room and was fast asleep after a quick snack and drink (served to him in bed). He is having to rely on more help with dressing and hygiene. He is very weak, and even fell today when going back to bed after lunch. Thank goodness my friend Laura had just dropped by! I needed her help and support. (thanks, Laura!)
So I am beginning to face the fact that we just might need Hospice. I don't think he is in pain. I think he is tired. I think he is tired of being tired. And I think that having some more help, although I don't know what they will do at this point, would be good. I'm hoping to make it through the weekend without too much guilt that I haven't done this earlier. But it is a real hard thing to do. And I will never stop hoping that tomorrow will be a better day than today. Each and every day I will will never stop hoping that. Like I said, facing the truth is really hard. But these changes the past few weeks...they are heartbreaking.
Sunday, February 1, 2009
It's in His hands
I'm ready to blog about it. The appointment with my dad's doctor (without my dad) on Thursday evening didn't tell me what to do. It did give me choices. And following that, a few days of a swirling head, weighing pros/cons, talking, thinking, and praying. It's either pursue medical treatments, or let nature take its course. Or as the doctor put it, "poop or get off the pot!" I didn't take offense at that statement. I already knew that was the deal. Committing to one of the choices is a difficult thing.
I want my dad to be comfortable. He doesn't seem to be in any pain, just complains that he is tired. (I assume he can feel pain by the "!!#!^*!!" he says when he hits his leg against something.) Of course, I want him to be with us for as long as he can. Pursuing the medical route may help with that, but at what cost to him? Doctor appointments, blood work, medications with side effects (the one the doctor spoke of, if needed, causes diarrhea) and whatever else...I have to think of how he will handle these things. Will they be stressful? Tiring? Confusing? Worth the time? If he were at home with his wife, what would he be doing? Going to the doctor? No, he'd be sleeping. And if he wasn't with her, and I doubt that he would be, he would be in a nursing home. He would not be getting back rubs, kisses, hugs, laughs, and the kind of care that we are able to give him. (My wise mother in law told me this, and I know it is true.) We have made a lot of adaptations in our home to help my dad. He has a caregiver when we are gone that dotes on him. He never sleeps in wet sheets or blankets, and I make him change his clothes when needed (even when he complains. And of course afterwards, he says, thank you!) He has a cane, walker, bath seat, elevated toilet seat and grab bars. We may not always use them, but they are here when we need them. We keep a watchful eye for messes...quickly cleaning them up to prevent any kind of hazard for him, or us. He has a variety of foods and drinks, socialization during meals and other times, and an accommodating staff. :) I think we are all aware of his difficulties, and try to think of things to help him be comfortable. I'm not going to list them all, but there are lots.
The doctor told me that either way was OK...and he gave me a hug. I thought I had my stoic face on, but obviously I didn't. Anyway, he mentioned that hospice might be appropriate at this time. He also told me that it is typically used when the patient has 6 months or so to live. As a medical professional, I do know that this is not always the case, but I didn't argue. And I don't think that hospice is needed right now. Not at all. I have gone through hospice care with loved ones before, and it is not time for that. When it is needed, I don't have any objections at all to their services...I will probably welcome it.
After almost 3 weeks of sleeping most of the day, my dad had a great day yesterday. He had one 45 minute nap, and another 20 minute nap right before dinner. He had three meals yesterday, and ate every bit that was given to him. He played Jenga with Saturday's caregiver, Lisa. He played solitaire by himself. He watched some TV, and even flipped through magazines. He went to bed at 8 pm, after getting up at 7. And this morning, I was awakened by the shower going in the hall bathroom. He was in there cleaning up, while I followed suit by cleaning his room. He ate a good breakfast and stayed up til about 10. He's still napping now.
So I am going to enjoy each day with my dad. We will make him comfy, show him our love, help when we can, and be grateful.
I want my dad to be comfortable. He doesn't seem to be in any pain, just complains that he is tired. (I assume he can feel pain by the "!!#!^*!!" he says when he hits his leg against something.) Of course, I want him to be with us for as long as he can. Pursuing the medical route may help with that, but at what cost to him? Doctor appointments, blood work, medications with side effects (the one the doctor spoke of, if needed, causes diarrhea) and whatever else...I have to think of how he will handle these things. Will they be stressful? Tiring? Confusing? Worth the time? If he were at home with his wife, what would he be doing? Going to the doctor? No, he'd be sleeping. And if he wasn't with her, and I doubt that he would be, he would be in a nursing home. He would not be getting back rubs, kisses, hugs, laughs, and the kind of care that we are able to give him. (My wise mother in law told me this, and I know it is true.) We have made a lot of adaptations in our home to help my dad. He has a caregiver when we are gone that dotes on him. He never sleeps in wet sheets or blankets, and I make him change his clothes when needed (even when he complains. And of course afterwards, he says, thank you!) He has a cane, walker, bath seat, elevated toilet seat and grab bars. We may not always use them, but they are here when we need them. We keep a watchful eye for messes...quickly cleaning them up to prevent any kind of hazard for him, or us. He has a variety of foods and drinks, socialization during meals and other times, and an accommodating staff. :) I think we are all aware of his difficulties, and try to think of things to help him be comfortable. I'm not going to list them all, but there are lots.
The doctor told me that either way was OK...and he gave me a hug. I thought I had my stoic face on, but obviously I didn't. Anyway, he mentioned that hospice might be appropriate at this time. He also told me that it is typically used when the patient has 6 months or so to live. As a medical professional, I do know that this is not always the case, but I didn't argue. And I don't think that hospice is needed right now. Not at all. I have gone through hospice care with loved ones before, and it is not time for that. When it is needed, I don't have any objections at all to their services...I will probably welcome it.
After almost 3 weeks of sleeping most of the day, my dad had a great day yesterday. He had one 45 minute nap, and another 20 minute nap right before dinner. He had three meals yesterday, and ate every bit that was given to him. He played Jenga with Saturday's caregiver, Lisa. He played solitaire by himself. He watched some TV, and even flipped through magazines. He went to bed at 8 pm, after getting up at 7. And this morning, I was awakened by the shower going in the hall bathroom. He was in there cleaning up, while I followed suit by cleaning his room. He ate a good breakfast and stayed up til about 10. He's still napping now.
So I am going to enjoy each day with my dad. We will make him comfy, show him our love, help when we can, and be grateful.