Dad

[arogers]

Cinder, What a blessed man your dad is to have a such a positive, loving and devoted daughter to watch out for him! I've read the string about your dad, and it truly is amazing that he is "coming home" to your care. I know everyone here has told you - as I've been told - that you need to take care of you, too. I know how excited I was when Bill came home - until the terror set in that I would be taking care of him!! God be with you this week as plans fall into place!

[cinder]

Dad is still doing well, no problems. His sputum is yellow today, but a test will see if that's a problem. I'm not thinking about it.

 

I passed cannula changing, trach care, suctioning, feeding tube maintenance and med dispersal. As well as daily care and picc line flushing. I passed bi-pap, nebulizor, humidifier and oxygen use (Dad is now on liquid oxygen). I will have to read exactly why Dad is getting fish oil every morning. I know it has to have a benefit, but....eeewww. I told Dad I better not see one fin growing, he laughed out loud.

 

Dad is wearing his talk cap about 80% of the time now. It is going a long way to showing he may end up having the trach removed in a short time. (that equals a few months in Dad time).

 

They still have set no actual day, but I see it happening this week, if all goes well. I still have stuff on the list, but it can't be done unless a date is set. Yes, I still hate them all, and want to say I appreciate those that are helping me in hating them.

 

Also want to thank the suggestion givers on brand names and web sites. This goes a long way in helping me to get what I need. Thank you so much for the continued support on Dad's behalf.

 

PS. Dad said to tell you all that "he is coming home, and he will have me read him what you say to him" (yes I almost cried, but he didn't see me)

[Guest kmk]

Cinder,

Have been off list for a bit and missed your post about the list of dad things to get/do.

 

One quick suggestions for the screen door. We put one in when our daughter brought her preemie home from the hospital to keep the animals out. It was a very inexpensive one bought from home depot for a outside door. Wood type with a mesh screen. I used the pressure hinges that allow it to close behind me...makes an annoying bang, but it does stay closed. I just screwed the hinges into the existing door frame molding. Don't know if you have that done yet, but it is a thought I had.

 

Jean's suggestion about the generator is a good one, but if at all possible, I'd look into one on my own. The Dr. may be able to write a script for you as a medical necessity and allow you to take it off your taxes. I wouldn't think it was any more out of the question than a script for a jacuzzi or hot tub for back pain sufferers. Just another quick thought.

 

Kathy

[onlydaughter]

Dear Cinder,

 

I just finished reading your Dad post from 1st to last. I'm amazed and inspired by your strength and devotion. (my mouth open in awe) I'm a newbie to this support group to a stroke survivor (my mom) and you took time out from your busy schedule to welcome me and offer me hope and advice.

 

I'm sooooooooo glad that your dad is doing better! He's a strong man and quite a fighter! I wish my mom was as strong and motivated as he is.

 

I also want you to know that everything you post: good, bad, venting, etc. has really helped me in dealing with my own issues of struggling with the unknown, drs, tests, pouting parent. (Boy do our parents really know how to pout!)

 

For every struggle you go through, I'm amazed and inspired by your strength and ability to overcome each one. I hope that I can be as strong, supportive, and giving a daughter as you are.

 

Take care and best wishes and lots of hugs to you.

Sylvia

[smerr]

Cinder, one suggestion concerning your need for continued electrical service. Contact your electric company and advise them of your dad's crucial need for continued electrical service. That way, if there is an outage, your house can be moved to the top of the list for repair. My dad had COPD and was on oxygen 24/7; their electrical company was very good about contacting them and letting them know about how long it would be before service was restored and at times even offered to bring out a generator. I have read your messages and can only say that I am amazed at your perserverance and your dad's strength. I pray that things continue to go well.

Sally

[cinder]

This is not really an update on Dad, though I will say that even though I haven't been there yet...I called and he's still doing great.

 

This is to say thank you to everyone who reads this thread. And posts support, advice and just thoughts. Who've come to care for Dad. I debated many times stopping this thread, as I really didn't think people wanted to see everything he goes through. I can't believe so many of you go back to the beginning and read it all. It's as big as a dictionary. But you do, thank you on behalf of Dad and all his battles.

 

The continued support and advice has gotten us both through this. Someday, I will post here, and make an announcement. Dad's Home. Until then, Dad's OK today.

 

 

[cinder]

OK. My sister called me early this afternoon from the facility, where she was doing training for Dad. She instantly told me to stay calm, so I knew I was going to go off. She said that the NP (head hun) had told her she was not releasing Dad to us. That even though we know how to do everything that she didn't feel comfortable in doing that. She is worried that we will get him home, something will happen, and we will sue her. She flat out said it.

 

I, of course, went off. Head hun then said, that she wants us to stay there for 24 hours so they can see how we care for him around the clock. When I went over there (after deep breathing) I asked her if at the end of the 24 she would release him. She said she didn't know. I said, so you're basically saying that you may never feel comfortable releasing a man in Dad's condition to family. She said it's a possibility. I said, people live at home with trachs and feeding tubes, what is the problem? She said it would be her name on Dad's release, not on all those other people's. I asked her where she wanted him to go, and she pointed across the hall door to the nursing home section. I asked her if this was some game so they could get another high cost resident that the state could pay them to care for, and she got all blustery. Bingo.

 

 

Needless to say I had a cow (internally of course, I still need these people). I had already worked out plan B in my mind, I won't go into what it is yet though. I'll know by tomorrow if it will work. They really don't know who they're messing with.

 

This place he's at just opened. It's all new. They have never released someone with a feeding tube and trach to a family caregiver. I can understand their view, honestly. But they don't know me, and I wish they would stop comparing me to other people. It's been a disheartening day, but at least Dad is still doing well. That's the important thing.

 

If this doesn't work it's on to plan C... There's always another plan.

[cinder]

Dad spent several hours at the hospital today. No, there was no problem. He was having his swallowing tests. And guess what. He PASSED!! OMG. I almost had a cow when they told me.

 

Tomorrow Dad starts on thickened liquids and pureed food. Small sips and bites and he is to be fed so that he doesn't take in too much at once. But man oh man. I told them that Dad could eat...that he only had the tube because he had started to refuse meals because he was ill. But who am I?

 

He is being assessed tomorrow by home health and the facility I hope to transfer him to...This facility is in our town, and they can continue to train us on Dad's care. I would like to hear exactly what home health could offer him here, I think it would go a long way in calming the fears of various people. And I'll be honest and say that I'm one of those people. There I typed it out loud. Happy!

 

rcraft/cinder/ronda/sissy

[cindy]

rcraft/cinder/ronda/sissy

sissy? I don't think so.......

 

Feels good to get stuff out....huh? Yeah, you said it......Happy for you.

 

I'm so glad I got to come back this soon and hear the latest on you and your Dad. I would have died if he would have come home and I missed it.

 

The soon to be tube removals and eating food just made my day. Thanks and as always....

 

Take care

[cinder]

It was a better day than we've been having. I met with the home health people earlier this afternoon. Because Dad has an indwelling catheter and picc (Peripherally Inserted Central Catheter) they can do monthly visits and change them. She said that since they were going to be here anyway, that they could change the outer cannula and feeding tube (both also get changed once a month). They will also do lab work monthly.

 

The first few days Dad is home, they said that they would be willing to come here and make sure everything is set up right and provide training if I don't think I have enough. They can't come everyday, but she said if I have a problem, to call them and they would come over. I liked her...lol

 

I asked her if Dad was healthy enough to come home, and she said from all she's seen, yes. She said, your Dad needs extra care right now, but he's not the worse I've seen released to home, by far.

 

I saw Dad eat applesauce and drink water today. The ST said that his food is having no problems, and that he can go onto solids pretty soon. But his liquids may always need thickener. I have a friend who wrote an indepth analysis on thickeners a while back, and I know it will come in handy. (thank you Michael).

 

The facility I'm hoping to get Dad to (where I'll continue my training) didn't come today, they are coming tomorrow. If all goes well, they will accept him and I won't have to deal with the place he's at ever again. They are great with him, don't get me wrong. I just don't need help in doubting myself.

 

PS. I'm glad you made it back too Cindy!

[cinder]

Dad was rejected by the new facility. "We are not staffed to meet his needs, and his care is not cost efficient to our benefit". In other words it would cost more to care for him than they would be paid. They said Dad is acute care, but the acute care place says he's ready for release. We wondered today if we just leave him there, if eventually they would be forced to release him to us, or loose money...

 

Plan C is just more of the same. We contacted the only other place in town that may take him, they are assessing him tomorrow. If this fails...yes I have plan D already in the works.

 

Dad had an emotional day. I'm not exactly sure who told him that the facility rejected him. But someone did. He cried on and off and got angry several times. He did eat over half of the food he was served though, so that was a very good thing.

 

I am running out of ideas here. Dad is finally to a point where he is ready health wise to come home, but his needs are more than anyone wants to deal with, or thinks I can deal with. If they reject him tomorrow too, I'm going to have to make some decisions. I'm not letting him go, don't get me wrong. But I will have to do some thinking.

[cinder]

My sis just called and said Dad's doctor called her. Sometimes he calls me..sometimes it's her. We don't know why.

 

She told him what was going on and he said that he's had problems in the past getting people released form this acute care place. He said that they are afraid of being sued, and put that over a residents happiness. He said that not long ago he went against them and discharged someone anyway. They got mad, but oh well.

 

He is going over there today, to find out what the problem is. He was happy we had already had Dad assessed by home health, and that it was a point in our favor, that they said they could do in home monthly changes and labs. He said after all your Dad has been through, he just needs the security of home now. Everything else is a bonus if he can get that there too.

 

I will update later on how this all went. If it went well, Dad will have a release date by the end of the day.

[jriva]

 

 

 

Cinder,

 

I've got all my digits crossed and my legs and arms crossed helping you wish for the best out come possible. Please update us as soon as you know anything because getting anything done this way will be difficult.

 

Seriously, no matter the outcome you've got a good doctor there with a heart. If it can be done, he and your family will pull it off.

 

You will be in my thoughts today.

 

 

Jean

 

[Guest kmk]

Cinder,

 

I can't stand the suspense. I'll be checking back here and watching my email for notice of your post. Hoping for the best of outcomes and that you have a date by the end of the day!

 

Kathy

[cindy]

Cinder,

Like Jean said thank God you've got a good doctor and one who cares. They are so hard to find these days. You will be in my thoughts and prayers, and I will be checking back to hear what happened. My hope for you is stacked as high as the heavens.

Cindy

[cinder]

I Have nothing to report. The doctor didn't return my call this evening, and the facility either didn't know or wouldn't tell me if he had been there today. Sorry guys, I know this isn't what you wanted to hear. Dad didn't remember if the doctor had been there either. I'll have to wait til tomorrow, or God forbid, Monday before I might know anything. Dad's doctor has been over there on the weekend before, so maybe we won't have to wait so long.

 

Once again, I'm sorry I couldn't find anything out. Also, they were able to tell me that the second facility didn't show up as scheduled. If they new that, then why didn't they know if his doc had been there throwing a fit? Whatever.

 

Dad had a better day emotionally, and still seems to be doing very well.

[cinder]

Dad is going to be released next week. However, Dad will not be coming home to live with me. Dad will be going to live with my sister and her family. Sis has hired several health care providers, including 3 LPNs to help care for Dad and his new needs. Dad is doing very well medically, but requires more than I can provide for him here. I am assisting my sis in setting up her new home for Dad and his equipment, but other than that

[jriva]

 

 

Cinder

 

I know you must feel very depressed right now---after all you've been through---because you're not going to be able to bring your dad home to your house. But surely you'll still be just as involved in the most important part of his care...giving him love and humor and understanding. And kicking butt, when the medical community needs it. Your sister, even with professional help, will not be able to do it all.

 

I hope you'll reconsider about closing this thread. We've all come to know and appreciate your dad. Good, bad or in between, we'll still want to hear updates from time to time. You are still part of our family.

 

Jean

[Guest kmk]

Cinder,

 

I can only echo what Jean has said. Without your unbelievable strength and fortitude I really believe the outcome for your father would have been far different. As you have said, he is going out of the hospital to receive care in a loving home, though it is not your home. I know this must be a horrible time of disappointment and upset for you after all you have done, and all you have gone through.

 

Please don't close the thread. It is one of the best on the site and serves to show newbie caregivers how it can be done. And done with compassion, humor, anger, and at times the grace that required all your efforts.

 

Please keep us updated on your dad's progress and yourself too. Your family still needs you and we do too. We need your strength, understanding, humor, and compassion. You are one of a kind.

 

Kathy

[cinder]

What if I start another thread called, The Return of Dad? Or what about Dad...The Sequel. Dad Episode 2.

 

I really tried not to sound depressed Mom. Honestly, I am pretty down. Knowing what's best and right, isn't always what's easiest. Knowing my capabilities and weighing them with what he needs...there really was no decision there. I don't know what part in Dad's life I'll play now. I've been told to rest and get myself back together... I hadn't realized I was apart, but I guess I am.

 

I won't close this thread, in tribute to Dad and his fans. But his future successes will have their own thread. Entitled...Dad's Successes.

 

Thank you for the comfort. Things just haven't been all that great lately. I don't mean to whine...but this has been a nightmare. I'm glad this part is finally over. For him yes, because it WAS all of his battles that were being fought. But the stress of the day to day living over the last several months...and this final decision, which only you readers can understand it's meaning to me, well....you get the idea.

 

Thank you for caring

[jriva]

 

 

Cinder,

 

"Dad, the Sequel" appeals to me, if you really, truly need to close this thread to feed something inside of you. We'll understand that so long as you keep the new thread updated the way you've done with this one, filling it with you and your dad's progress, lack there of, and emotions ups and downs.

 

For your sake and the sake of everyone else going through the process of having a parent struggle with their health, you shouldn't change your writing habits and style and turn into a Mary Poppins just because you think that is what we want to hear. We don't. We appreciate your Dad thread because it's about love and personal growth and dealing with emotional hardships. That shouldn't end just because you close one thread and start anew.

 

Jean

[screspo]

Cinder,

 

This thread is what got me to post here. I was lurking for a long time and when I read "Dad" I finally decided this was a place to let out my true feelings and to get honest opinions and support. I don't think you know how your thread has helped people. My marriage almost ended due to the stress of being a caregiver and when I started posting here I finally realized I was not CRAZY, my mother-in-law who stroked was not CRAZY, and most of all my husband was not CRAZY. By you posting every day and being so honest about your feelings, your fathers good and bad days, problems with the Dr.s, Jean and Kathy's amazing support and guidance, etc, I would have given up..... but I didn't... all because of this site and "Dad". Thank you so much.

 

Shana

[cinder]

There have been no new real changes in Dad

[Guest greyhe]

I'm glad to hear your dad will be so close. If he can't live with you, at least it's just a short hop to see him.

 

Michael

[cinder]

Dad's had a rough few days. They went ahead and did the outer cannula change at the acute care 4 days ago. Two days ago Dad decided to pull off the outer cannula of his trach and throw it, along with his trach cap and oxygen cup. Luckily he did no damage during this.

 

Yesterday his blood pressure spiked out of no where and several vessels broke in his eyes. No one knows exactly what happened, and I've asked that an MRI be performed. I honestly don't know what's going on, but feel an MRI can't hurt. His blood pressure regulated almost immediate, and the vessels are the only sign that anything happened.

 

Today Dad was moved to the vent wing of the facility. To recap: Dad is not on a vent, but needs a vent treatment via a trach bipap at night.

 

This afternoon Dad pulled his G-tube out, leaving the balloon in his stomach. We made a trip to the ER, and Dad is now in the hospital for overnight observation. They said that 9 out of 10 times the balloon is passed the old fashioned way with no problems. They replaced the G-tube and we'll see by tomorrow if more will come from this.

 

Like I said, he's had a rough week. He is extremely agitated and I am at a loss right now on what to do for him, other than assure him that everything is OK, and that he will be leaving there soon. I've also asked that his medication be re-evaluated and something added, if needed, to reaffirm his feelings of security and calm the agitation.