Dad

[jriva]

 

Hi Cinder,

 

I shouldn't be posting when I feel this way, I know.

First of all, when you are feeling the way you did/do when you posted up above is exactly when you should be posting. Writing out your feelings is cathartic and it will help you with the grieving process that you are going through. Putting our feelings in black and white makes them more real and easier to sort out. You don't want to keep your fears buried, Cinder. Facing them is part of the process. A hard part of the process, but a necessary one.

 

How do you live with yourself. When you promised them.

I can identify with this feeling. When my dad was diagnosed with terminal lung cancer, my brother and I had promised him we'd keep him at home. And we did that for the almost 7 months and I was living with him for much of that time. Then a few weeks before he passed away, I fell and broke my elbow. It was a stupid, preventable accident, but the bottom line was that I could not care for my dad anymore. We had to put dad in a hospice home. I cried over my own stupidity and those feelings of letting my dad down right through to the funeral. It was the worst kind of guilt trip I'd ever layed on myself.

 

You get over that kind of guilt by knowing---really knowing deep in your heart---that no one else could have done a better job than you did for your dad. No one else could have cared more about your dad's day-to-day comfort this past year than you did. You also have to trust that your dad knows (or will know) that you did your very best to keep your promise. We all know (and you will too someday) that not all promises are possible to keep, no matter how much you want to. You have nothing to be ashamed of in the way you've cared for your dad. In time you'll come to believe that and be proud of how you've handled yourself this past year.

 

I feel heartbroken, like I'm grieving for him. But he's not gone. It's hard to explain.

Cinder, anyone who has had contact with a Hospice experience knows that what you've said here is very common and completely understandable. People do grieve for their loved ones before they are gone. We do grieve in stages. If you didn't feel this way, I'd worry that you are in denial. Your siblings may not be ready to start this process because they are not as close to the situation as you are. They don't have your depth of understanding of your dad's failing health and mental and physical strength.

 

Come back to this thread to post no matter how low you feel, okay? We all understand that you need to purge these feelings. We all know that you have to work through this pain. And if we can help, we'll be here.....

 

Jean

 

 

 

 

[cpopevis]

Cinder,

 

I know that someday soon I will be in the same place you are in. My husband faced that with his mother in 1995, 1996. I promised my mom I would let my dad deal with everything if anything happened to her. I did for 3 1/2 years. I felt that I wouldn't be able to live with myself if I didn't come help, because of my love for her. I am glad that I didn't keep that promise now.

 

My heart and prayers go out to you each and everyday, even when I am dealing with my own problems. At this point in your journey, you have done everything you can. I think your dad would agree. He does need to be where he can have 24 hour medical care. I think he would agree with this. He is still fighting, and that is the best part. He will understand when you explain all of it to him. I'm sure he already knows.

 

I wish I had more advice or comforting things to say, but I don't. I won't pretend that I do. Just remember you are loved by your father and all of us here. I will say extra prayers for you today.

 

[cinder]

I know there are medical people on the forum. If you have any knowledge about the following scenario please let me know. Dad has been deep suctioned for several weeks now. They said he was aspirating food. Before that he often sounded congested but his xrays were clear. Now he has an on-going respiratory infection and his saturation drops out of no where until it's a scary thing. He now has a feeding tube so he's not aspirating. Now they say that he is not swallowing saliva and mucous, that it is slipping down his wind-pipe into his lungs. Through all of this the suctioning is being done. The tube through the nose, into his throat, until he coughs and gags for 15 minutes, suctioning.

 

Here's my idea, so stick with me. What if the consistent suctioning really caused all of these problems. He was raspy yes, but he'd been that way for years. I've just spent many hours reading and trying to verify my point. I think I have. It is common practice to squirt a shot of saline into the suction hose before starting suction. I have read alot now on the dangers of this and how groups are trying to change this practice. Studies show that the saline actually washes any bacteria clinging to the inside of the tube down into the airway, causing infection. Studies show that saline if opened once and used, then sat to the side and used the next time, contain cultures of staph. These are then squirted into the airway. Studies also show that those having the saline used were having saturation problems. These are the reasons that saline is being debated so heatedly. The opposite groups say that saline makes the mucous more water like and it's easier to suction. But then again it's argued that mucous is almost water resistant.

 

I don't know right now if I've got a clue, if what I think is plausible. I don't know how to express these concerns to anyone and sound like I know what I'm talking about. I do know for a fact that I've seen open saline bottles in dad's room several times, it just never clicked what they were for. I started reading about suctioning practices to see if there was a way for me to continue caring for dad. I found all of this. Am I way out there?

 

 

PS. Today they asked for permission to put in a trach. Yes I said trach as in tracheotomy, as in permanent hole in his throat. So they could suction that way. I talked to dad and he flat out refused. From what I can see it would be less traumatic for him in the long run. But for crying out loud people, why can't they just find the problem instead of ways to deal with the symptoms. My dad has speech problems, a trach would take what he has away.

So much to think about. So many decisions.

[cinder]

It's been a week since I posted on Dad. In case anyone wonders, yes he's still in the hospital. He was moved out of progressive care though. He's very lethargic and uncommunicative. When I see him, he rarely opens his eyes for more than a few minutes to look at me. I don't know if he's really that tired (but who wouldn't be) or if he's just tuning everything out the best he can. He's still suctioned every hour. Yesterday they gave him a transfusion because his blood count was low again, and also in hopes of pepping him up a little. He still has the infection and his white count has risen within the last 3 days. He's still contagious and I still have to wear the isolation suit to see him.

He's so different these days. It's like he's not there. Not the dad I've tended to for years. I worry that they will never really figure out what happened to him. But part of me has ideas as I've posted. But what do I know? I'm just a pissant used to be caregiver that couldn't possibly tell them the best way to lift him. Turn him. Make him feel like he's still a real person. Not just a...thing.

I hate this. This whole thing.

I hate student nurses, on-call doctors, respiratory therapists who weld a suction tube like a razor edged whip, the critical care charge nurse, cute neuro girls that come and get him for a ct and have to get 50 other people to help lift him and make him feel like a whale, medical people that can't interpret test results so you have to catch the doctor whose only in at 6 am, dietary who brings a meal to a man with a feeding tube then just says oops and takes it away (after he sees ice cream), ER doctors who (even though you tell them he was just there 2 days ago) run all the same tests again because they think they know what's wrong (but they never do), plastic surgeons who jam little scissors into healing wounds to drain old blood, admittance girls who make you set up a password otherwise they won't give info over the phone, lab people who (even though you tell them over and over that his veins roll) think they can just come in a jab away then say huh they do roll, nurses who even though you've told them it's difficult to get blood out of the right hand for a sugar check stick it anyway before going to the left, being told there is no long term prognosis, everything.

[cinder]

It's been another week. Yes, he's still there.

 

His doc called today. Said he had just gotten my message from a few days ago, where I had told him that he was wrong in thinking the catheter was out, as he ordered. He called to tell me that he had just talked to the hospital and yes, I was right the cath was still in. One of the nurses had tried a different type of cath and couldn't get it to work (like I told them from past experience it wouldn't) but instead of talking to the doc about it, they made the decision to replace the original catheter type. The one the doc thought was causing the infection. I guess he layed into them good for doing that on their own.

 

Anyway, the doc then went on to say that they have discovered (finally) a "deep pocket" of infection in dad's original wound. They think that it is producing the infection but the antibiotics aren't getting to the core of it. So he asked the original surgeon to take a look at it, but the surgeon said he wasn't touching it in dad's condition. That he'd already been in there twice and it wasn't a good idea to go back in. So dad's doctor said he was getting an "infectious disease expert" to look at it and see what he thought.

 

In the mean time I have completely set up my dad's future stay at an acute care facility upon release. It was a pretty nice place that just opened. I was leery because I did alot of research on it and found out that last year it was a nursing home under another name. The state shut it down. It was apparently bought though, or the original company did a lot of paper shuffling. But when I looked at it I was impressed, since dad would be in a separate building than the home section and all the staff are RN's or nurse technicians (glorified CNA with more medical experience) and they have a doctor on the floor at all times. After I grilled them for an hour and toured I felt that dad would be safe there. What impressed me most was that they were putting in a small ICU. Glass and all, for patients that need a visual monitoring also. They call it a mini hospital that I hope will stop ER visits. I hate them.

 

 

That's where we pretty much stand right now. I hope they've localized the infection and he can start healing. I think there's been alot of damage done. He's still sleeping most of the time. With the constant fight his body is in, I don't blame him.

 

[kbosworth]

Hi Cinder,

I'm so sorry that your father's saga is still going on. sigh.......it sure can be a challenge.

 

I did want to comment on the acute care facility since I had a lot of experience with that. One thing I have found is that long term care facilities are closing their doors at an alarming rate. MOST of the time it is due to financial reasons. Sometimes it is due to poor quality of care. The fact that the state closed down the facility you are looking into would make me feel better since you know they are going to be on top of everything for the first few years after it reopens.

 

But no matter what; the bottom line is that family members must be vigilant in making sure that the care is good. You are already one of the best advocates I've seen and I know you will be on top of things even more than the state!!!! Good for you.

 

Good luck and take care. I hope they can treat the source of the infection soon.

Kathy B

[cinder]

Throughout Dad's hospitalization, I've continued to post under this thread. Each diagnosis, each success, each battle. Sometimes I didn't think there would be many more, sometimes I thought I would have happy news of a return home. Times when I thought he wouldn't be able come home again. I really don't know right now how to really go on with this. I've spent the day reading, researching, thinking.

 

They had called in an infectious disease expert, who ran different tests. The results came in, and I've learned a new word. Lymphocytes. From what I can determine everyone has them, they are cells. But when they start replacing the healthy white and reds cells, it's called Leukemia. All I heard though when the doctor was talking was cancer.

 

How can such a small word trigger such horrifying fear? How can someone battle for so long and suddenly they find this? Symptoms include antibiotic resistant infection, blood loss, fatigue. I've spent the last couple of days looking at treatment, calling family. I know I have to prepare for the worst and hope for the best. His doctor said that he's not God, and he can't tell me how this is going to go. Dad was in rough shape already. Chemo, radiation, stem cell replacement, surgery, these are the treatments. You take into account the stage, age of patient, general health, history...then decide which of these is the best option. Since this was just diagnosed they don't know the stage yet. Dad has to go through all kinds of new tests now. Then they will decide how progressed it is. His doctor said that Dad's not healthy enough for treatment.

 

How do I tell him? How? Will someone explain to me how I am going to tell him!! I just feel like throwing everything!! I am not ready for this one, I'm not. I have to but I can't. When? When is this battle won for him? Why didn't he just get better? Why did he have to go through all of this just to be told such a terrible thing. I want to just destroy something. Where is the fairness in this. Where is his happiness, if he were going to get leukemia, why did he have to spend the last 5 months in the hospital like this!! I am so angry, so..devastated. I didn't see this one coming. Why didn't I? I told them months ago to run every test on his bones that there was. It all looked like bone disease. I remember posting that. So why. Why. WHY!!

 

Please tell me someone has been through this. Tell me it's not as bad as it looks. Tell me it's not even real. Tell me my Dad did not spend all this time in there going through every test known to man, every procedure they could think of, every inhumanity, every invasive action they could find, so I could top it all off and tell him he's now going to die of cancer!!!

 

I'm so sorry...But I had to write this. Please ignore this negative post, until I find something inside myself again. Something to help him...I don't know. Something. It has to be there. There's so much more for him now, so much more to go through. When does it end. I just don't understand

[cinder]

I've debated changing my last post so it wouldn't sound so bitter and angry. I've decided to leave it because I feel it was an honest reaction and therefore a needed entry in dad's journaled illness. I think that if I removed it, I would somehow be suppressing that anger, and a few years ago I paid a crap load of money to find out that that's not what normal people do. They let it go. So I'm leaving it as I hate to waste money.

 

I can't say that the anger is gone, it's not. I still have spurts of "I don't believe this" and throw something. But people are getting faster at ducking and I don't feel guilty anymore. I've finally figured out that this is just a new battle for Dad. He's no different than he was last week or the week before. We just know what to call it now, instead of the "mysterious infection". Always sounded like a late night movie to me.

 

I am attempting to retain my humor, although I have to tell you it's much harder these days. Dad doesn't need my anger or fear though. He needs my smiles and laughter. I've learned alot about leukemia in the last few days. We still don't know progression rate, and honestly I don't know if I'm ready to get into all the stuff that will now be happening. But I know I have to, for him. So I'm trying to learn all I can, so I can be an educated advocate. I hear they're the best kind.

 

Sometimes in life you hear something, and the world stops. At least it seems that way. I can't really express how devastated I feel that he had to endure all of this, only to get sicker. I keep questioning this fact. There is no answer. If he were going to get this, why did he have to have those strokes, why the battles, all the indignities and pain of these last several months? But there are no answers.

 

I have found the thing inside of me that I've been looking for. It's called strength. And the funny thing is, the more you use it, the stronger you get. My father went through all of this to teach us all about the bodies unbelievable ability to overcome, survive. As soon as I can, I'm bringing him home. As promised. And I will learn what it's like to be a caregiver for my father, multi-stroke leukemia survivor.

 

PS. In case anyone wonders, we've decided to not tell him until absolutely necessary. It was a rough decision for me to agree to, but he's honestly just not mentally prepared to hear it at this time.

[jriva]

 

Hi Cinder,

 

If you were my daughter, I'd be SO proud of you and that post you just wrote. It shows so much grown, strength, determination, and compassion---all the things that any parent would want to see in a child. None of these things come easy, as you know, and no one would expect you hold on to all of these things every single day as you travel though this period in your life. You'll have your ups and downs. Try not to feel guilty for withholding information from you dad right now. You're doing it for the right reasons and the decision isn't written in concrete if things change later on.

 

I am sending you a whole bunch of virtual hugs and a few boxes of my chocolate truffles.

 

Jean

[Guest kmk]

Cinder,

I am so saddened by the latest turn of events with your father. Your strength, perserverance, and continued optimisim in the face of seemingly insurmountable odds continues to inspire me. I only hope that when I have problems as serious as your father's I have someone so caring, kind, and most of all tough to help me through it.

 

Sending you healing thoughts and strength (though I think you have more of the last than anyone I know),

 

Kathy

[cinder]

I was informed a few hours ago by Dad's doctor, that the Oncologist who was asked to consult on his case has ruled out any form of cancer. Dad does not have Leukemia. I honestly don't know how they can drop a bomb like that only to tell us a few days later that it was a mistake.

 

Though from what I've read I can actually understand how Dad's cell count would have led them to this generalization. They have gone back to the original theory that his immune system is completely shot, and his body is not producing mature white cells. They asked if they could be more "aggressive" in their methods of treatment. I have to meet with them on what the heck that means. I had a split second picture in my mind of one of them holding him while the other smacked him around. Totally unacceptable behavior to say the least. If they haven't been treating this infection aggressively, I have no idea what they've been doing.

 

Anyway, yesterday Dad had cancer, today he doesn't. Tomorrow if they tell me he's pregnant I won't be surprised at all. I've lost almost all faith in the hospital today. The roller coaster of the last few days was devastating, and the news today... Well I think everyone knows how emotionally stressed I feel over all of this. Who wouldn't be. But I'm really glad he doesn't have it.

 

Today my Mom called and asked me about a disease a new client of hers was diagnosed with. She assumed I would know about it. I said, " I don't know about that disease, Dad never had it".

 

[jriva]

 

 

Cinder,

 

The really sad part is that it's not all that unusally for doctors to tell you one thing one day and change directions the next day---as if the reality of hospitalizations aren't roller coaster enough! I've often wondered if it's the doctors that need to take a course in communication skills or if we, as family members, latch on to the "maybes" and "could bes" and turn them into fact before their time. Either way, the ups and downs wear you out. Before they're done, you might just be able to take the state licensing exam to become a doctor.

 

Hang in there Cinder! Just be sure not to take any weapons to the hospital with you. I don't want to see you in the headlines: Daughter Guns Down Her Dad's Medical Team!

 

Jean

[Guest kmk]

Cinder,

So glad to hear that the cancer has been ruled out! Preganancy, now that is another issue all together!

 

I hope things continue to improve, and that whatever the heck "more aggressive" is, it starts to work.

 

Sending you healing thoughts and strength,

Kathy

[cinder]

I was contacted by the hospital and told Dad was going to be released. They said he'd had an injection to boost his immune system, and would have another in about 3 weeks. They contacted the acute care facility (remember that was where he was going?) and they came and assessed him for admission. I had been really leery, as everyone knows, I didn't know how he could go from so sick to fine and dandy in days. Here's the thing, there's always a thing, the acute care assessor said Dad was too healthy to go there now!!! They wouldn't take him. I realized that if both the hospital and the facility said he was too healthy to be there...Dad must be healthy!!! We contacted the local facility here in town, the one he usually goes to, because his doc said even though he's doing well, he wanted him to still be more medically monitored. The rehab place took him and said they are scheduling him for therapy!!! He's healthy enough for therapy??!!

 

Dad was released from the hospital and is now in town. When I went to see him last night and just now, he looked great!! He talked to me and laughed (I love to make him laugh). He's not raspy, no suctioning, he was sitting up and watching crock guy!! I put the posters and pictures up in his room and he told me where he wanted them!! I am having a freaking cow over here, I thought so many times... Well you all know what I thought. I have gotten more in depth info on the we thought it was leukemia thing, and I feel more confident that his cells were only mimicking the disease, not containing it.

 

I am amazed once again at his will and ability to overcome, push past. I am still scared, as I have been trained the last several months to watch behavior and numbers like a hawk. But I am not spitting negative energy or spirits I swear... I'm just doing my job. As of today, my Dad is healthy, happy, talking and apparently content. Next battle: Eating

[Guest kmk]

Yayyyyyyy! Hoooooooray! Way to go Dad! I'm sure you're just floating right now, and deservedly slow.

 

And you are right. It's hard to not wait for the other shoe to drop. Hopefully now that things are on the right track again, they will stay that way! For now, enjoy the heck out of it. Sounds like you are.

 

Keep us posted.

Kathy

[cinder]

Dad was moved to the facility earlier in the week. He seems to be doing well so far. They are watching his numbers and monitoring oxygen levels, because as we all know Dad loved to scare everyone to death. He is also being watched for an allergic reaction to the immunity booster, which I didn't know about until yesterday. I guess a percentage of people actually react to it. When I heard that I looked at Dad and said, Don't even think about it. He has decided he can talk again, and we are communicating like we used to. I think he was just too tired and ill to be able to concentrate on the brain to mouth connection for the last month. I have fingers crossed like crazy (and boy is it hard to type like that) .

 

He seems to be doing so well. If this continues he will have another booster shot next week, after they assure there is no reaction....He can come home!!!! OMG I'm scared to death. I get sweaty just thinking about it, but he appears to be almost as healthy as he was when he left. So I'm not as scared as I was a few months ago when they talked of release but I didn't think he was in good enough shape to stay healthy for long. I'm so afraid that I won't know enough to do for him. He has several new normals now. I am reading and training on them. Things are always scarier from a distance. I keep telling myself that.

[jriva]

 

Hi Cinder,

 

Man, that is great that your dad is doing well enough to be coming home soon!

 

You've been through this 'stage fright' stage so many times, and you've always managed to come through for your dad. So, settle down and put your nerves to bed. You'll do fine. I know these things.....

 

Jean

 

 

[cinder]

Just a quick update. Dad is still at the facility. He goes for his second immune globulin shot in a few days. Sometimes he remembers he can talk and sometimes he just doesn't think he can. We get through it OK with a lot of security talks, reminders. I brought him my laptop today and played a pictorial movie for him that I made. He seemed to really like it. There were several shots of him here at home, I think they went a long way in reminding him he lives here, which is why I did it.

 

He has a bad skin tear on his right wrist from someone's careless movement practices. Dad's skin has been like tissue paper for years now, but with care... Let's just say they know that there better not be another one. Other than that he appears to be doing great. They started suctioning him again though, but at least he's now coughing when he needs to.

 

Sheesh, could it be a week and then he'll come home? He looks pretty good...

[Guest kmk]

Cinder,

 

Sounds like things are getting better day by day! I'm so glad that you can actually see light at the end of the tunnel. Hopefully things will continue to stay on the right track and your dad will be home in another week. That time will pass faster than you know.

 

Thinking good thoughts for you,

Kathy

[Baffin]

Cinder,

After reading all you have wrote. All I can say is WOW!! I now realize that all the probs with my mom are not as bad as I thought. I was feeling sorry for myself and haveing a hard time with it but now you have inspired me to be stronger. Thank you! You are surly earning your angels wings. God bless you and your

Dad.

 

 

 

(Baffin) Thomas

[jriva]

 

 

Hi Cinder,

 

After reading Thomas' post, it dawned on me that your DAD thread deserves to be listed in our "Important Caregiver Links" topic in the Classic Postings and Advice forum. It's the only thread of the entire board that chronologically follows the caregiver roller coaster and as Thomas' points out, reading the entire thing start to finish is a true inspiration to others.

 

I know you're busy getting ready for your dad's return home. Make sure to keep us updated.

 

Jean

[cinder]

Hello, Ronda? This is Theresa, your Father's nurse today. I've been asked to call and inform you, that your Dad has an ulceration that has developed at the base of his original wound.

 

10 seconds for her to say it, and a 6 month nightmare flashed through my mind in 5 seconds. While it was flashing she told me it became evident earlier in the week, was closed, now open, bleeding and oozing. I asked if she had consulted a doctor, yes. They were waiting on the doc's return call. I told her to tell the doc I wanted him cathed immediately. I hung up and waited. 10 minutes later she called again. The doc ordered a cath, anti-biotics and a culture. (that will tell them if it's infected and if they're using the right antibiotic)

 

They asked me if I wanted him transfered back to the hospital. I asked if they would pre-admit him so we could by-pass ER. They said they didn't see a need at this time, so I told them to do the culture, give me the results tomorrow, and if there was infection that he would need to be admitted ASAP.

 

I don't want this. I just don't. I can't even begin to talk about it, so I won't. I spent a good deal of the day with him, told him what was going on. He said he didn't remember being in the hospital, or having the first ulcer. I reminded him about all the dressing changes and he nodded, like he did remember that part. I said if the worst happens he might have to go through some of it again. He said it was OK.

 

He said it was OK. I actually had to turn away from him for a little while, I can usually hold stuff together in front of him, but that got me. I'm trying not to spit negative spirits, create mental chaos, and all that other stuff. But I've been trained to feel like a new nightmare is beginning. I don't know if, how, when... But I know my Dad, the world's greatest survivor, said it would be OK. So I'll just take a deep breath and believe him.

 

 

[jriva]

 

 

Cinder,

 

Your dad is the original come-back kid. So, take a deep breath and know that we're all keeping you and your family close in our thoughts.

 

Jean

 

 

[cpopevis]

Rhonda,

 

Keep smiling, he will be ok.

 

[cinder]

They said there is definitely something growing in the new ulcer. Right now the doc had not been there to view results. HA!!! Oops, sorry. Kind of slipped there.

 

Anyway, the nurse said that the cell resembled (to her) MIRSA in characteristics and shape. But the doc would have to verify. Dad had MIRSA several weeks ago, apparently it's back and is now in an open wound.

 

I asked her to tell the doc that I wanted an ultra sound done tomorrow on Dad's back so they could see if this wound (it's only as big as a straw tip) is tunneling. Which means small on the outside, but almost a tunnel of affected tissue. They can go so deep in such a short amount of time. If they say it is then Dad has to go back to the hospital for another surgery.

 

Dad is doing great though, in pretty good spirits. I do the worrying for both of us. In case anyone still reads this, I will post what goes on with the ultrasound and extended culture.

 

PS. If you don't want to read back issues of Cinder's Digest, MIRSA is a staph infection, generally associated with people in and out of hospitals. We all carry it, but it's only dangerous if you're health is weakened.