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cinder

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Since I've started coming in here I've made it known that dad is hospitalized right now due to treatment for his first pressure ulcer. His doctor called me a little while ago and told me that dad has had 2 new ulcers come up seemingly out of no where. It verified what I told him about the first, which sadly made me feel better that they saw it for themselves. At first I was interigated about his home care, reported to social services, and dad was "flagged". I got through that ok, because of his doctor's assurance that I take good care of him and records I kept of his care. But the hospital staff treated me pretty bad.. Anyway, they now see that the ulcers just appear. He had started healing from where they had to remove the first, finally, now 2 more. I asked his doc if they were bad enough to need surgery..he said he thinks so. I'm completely grief stricken with how much more he will have to endure. I can't understand why, after all this time, he's started to ulcerate, and I hope were both strong enough to get through this. I hate stroke, I hate diabeties, I hate infection that gets so far into a man that parts of him need to be removed.

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Hi Cinder,

 

I haven't answered your post before because after reading it a couple of times, I thought, "Oh, god is this my future?!" My husband is diabetic, too, and although he isn't bedridden from his stroke, it is always a possibility given it would only take the flu to make his transfers impossible. Terry's post made me realize that all you really need in the way of support, at this point in time, is a good hug and a little understand..... so here are mine.

 

Jean

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I went to see dad today. My brother had called me earlier, he was very upset, crying. He said dad wouldn't look at him, talk to him, nothing. I told him that he does that right now. But it was hard on him. He wants the dad he knew back. When I went to see dad, he looked at me as soon as I came into his room. He said, I had a dream you died. I was so happy he spoke to me that I wouldn't have cared if he dreamt I danced naked at walmart. But I said, I'm fine dad. He nodded and went to sleep. A while later he woke up and I asked if he remembered my brother's visit, he said no. So I used my phone and we made a recording to my brother. Dad said, Hi..I love you and I'll talk to you later. When I got home I called my brother and played it for him. My dad is very hard to understand so I had to interpret, but my brother felt alot better.

 

ps.I've been changed to assocciate member!! How exciting!!

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It's been a little while since I've posted on dad's recovery. He's still in the hospital. His 2 new wounds responded to treatment and surgery was not needed for those. His original wound is still draining but they plan to close it soon. It's about the size of a half dollar, it ended up being a lot smaller than they originally led me to believe. I think they were trying to make me feel bad.. wink.gif However, I was asked to authorize a blood transfusion today, it's the second in as many weeks. It's a scary thing to me..someone's blood in my dad. I know it's not like it used to be but still...I've given blood but it takes a while to be processed etc. And it was still found to not be compatible. Where is the blood going? Is his body producing anymore? I don't know. They don't know. From all I've read it could very possibly be a bone disease. I'm scared to death for him. Thanks for letting me vent.

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Dad's white count is off. He's been put back on antibiotics. They're doing blood work to find where the infection is. Anyone want to bet it's in his bones? I hate everything. They won't close the wound now, which means he won't come home. He's also complained of stomach pain so they gave him morphine today. They don'y see anything wrong there though. So I told them sometimes he replaces some parts of his body with others. I don't know. I want him back here with me. I want to...go back I guess. Just go back. All I've thought of today is that Christopher Reeve died from complications of a pressure ulcer. It hit our family close to home.

Of course tomorrow is another day. This up down stress thing is killing me. He's fine, he's not, he is..not. I'm having the dreams again. The ones I have when dad's in the hospital. I go floor to floor trying to find him. I can't. I just keep running and yelling for him. No one knows who he is. I hate those dreams. He's supposed to be here and I'm supposed to take care of him, what else is there? Now I'm rambling, lol. Sorry

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Hi Cinder,

 

Wow, you've had a couple of bad weeks, haven't you! It's so stressful to be on that roller coaster ride when the medical community can't track down the source of a problem. And to have your dad's hospitalization coincide with Christopher Reeve's passing has got to be extra tough! Hopefully, you won't have to wait much longer to get a prognosis. In the meantime, remember that you've had the strength to get this far and you can get through this, too!

 

Cyber hugs coming your way.... pash.gif

 

Jean

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Thank you, thoughts and hugs always welcomed in Indiana (it's a rule). Dad is a survivor. My father has beat more life and death situations than any 10 people I know personally. He will beat this too. Thank you for the reminder.

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Update: Dad's wound was closed on tuesday. So far so good. The other ulcers that came up recently are still there, they aren't sure if they need surgery though. As of right now if all goes well Dad should come home in a few days. I don't know how to say this without sounding..I don't know, like a goober. He's been in there for several weeks now, and honestly I'm scared to death to bring him home again. It's not for selfish reasons. I love him and like caring for him. It's the relearning him, training over the ulcer, the new cath, the new bed, everything. I always go through this scared stiff feeling when he's been away and I know he's coming back soon. I don't know why. I know we've been through everything there is, I know I can handle it, but it doesn't seem to matter. It's the constant stress while he's gone, the insomnia, the worry. I go through all this while he recoups from whatever then he's home and I'm exhausted and dealing with in home medical visits again, oxygen people, bi-paps, nebulizors...And all I want is for things to be quiet while dad and I re-adjust to each other again. Is it normal for me to be feeling this stressed over a happy thing? Sheesh I sound like such a winer..lol I'm really not, at least not around here. No one understands how I should feel like other caregivers. My father's health is not a constant stress to other family members, even though they are affected. Does anyone understand where I'm coming from?

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Hi Cinder,

 

Your post brought back a flashback from the days when I cared for my dad. The home nursing visits, commission on aging and oxygen people all coming and going...always on their schedule, rarely on ours. Change in cargiver schedules can be stressful, even the changes that bring good things into your life. Just the fact that you are sleep deprived can stress you out over something as simple as a hangnail. Hang in there, Cinder. Things will iron out for you soon after your dad comes home.

 

Jean

 

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Hello Cinder,

 

I know how you feel. I get scared about my mom coming home everytime we have to take her to the hospital. I almost feel like saying what's the point, something else will go wrong once she gets home. Then after we get her home, things calm down and start working the right way again and the scared feeling goes away. I am the same way with my mom. I love you and I like taking care of her. I always thought I was the only one who felt scared about her coming her. I know things will get better for you once you have him home. Sometimes it feels like you are starting all over again, and most of the time you are. Hospital staffs job is to treat the family bad, I think. They make you feel like you aren't doing the right thing, when you are. Most hospitals are understaffed and that makes it hard for our family members to get the care that they get at home. Ok I am rambling now.......Keep your head up......It will be fine....... pash.gif

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hiya.gif

My husband had the stroke July 03.

My experience with the hospital staff was mixed.. There were good nurses that fussed more than I did and then there were the ones that felt they could not handle my husband alone because of his size.. Thank goodness for male nurses.. I tip my hat to all of you.. You are nursing Angels.. They never comlained if my husband was soiled or needed something.. I also had to learn to be patient and wait when they were free.. The ARE understaffed. On my husband's ward night shift consisted of 2 RN and 2 Aides for 50 patients.. yikes.gif

 

They even brought me clean linnens for my bedding..

When they were occupied I took matter in my own hands and started to clean him up myself.. I was even allowed in the kitchen to get anything I wanted for me at any time. I spent two weeks by his bedside only to go out to the cafeteria or to a dinner with family after countles urgings..

 

I have found some even to the point of being careless but what can you do.. If at all possible be with the loved one as much as you can or at least someone in the family.

 

Yes, once they get home what a difference.. It is like he was reborn.. To be in the familiar sourroundings is even healing.. No more manipulating..

The first thing we did that evening is give him a real shower..of course I had a bathchair all prepaired.. As a reward I got a big sigh and a smile from my husband and a thumbs up..

 

Have no fear if you don't know what to do ask,, if he needs transfers ask how to do them properly, that is very important to know.. otherwise both of you could be hurt..

Our therapists were more than happy to answer all my questions, had me do a home diagram and made sure everything was in the right place..

 

Take care

Angie

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Thanks eveyone, I thought it was just me that was scared. I thought it made me a bad person, and inept. I guess the thing is that it's normal to feel that way, the difference is that you do it anyway and act like your ok. I sometimes want to tell those people to get out of my house, he's mine! Cyndip, that was a good, I also always feel like how long til something else happens. I swear if it could go wrong it happens to my dad. I try so hard to watch and care and contact the doc if necessary but even this last time it didn't stop him from getting that stupid ulcer. When things happen to him am I the only one that thinks it's my fault. Even if I know it's not? Last spring my father had another stroke. In my care. I know it's illogical but I feel like I let him down. Everytime it happens I research to find if there was a way around it. Sheesh I'm rambling now..sorry I'm kind of tired. Thanks guys for caring enough to post here.

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Hi Cinder,

 

You know, the human body is an amazing thing. A person can abuse it for years--- eating too much of the wrong things, drinking too much, not sleeping or exericising enough, living too hard. And we can get away with doing those things for decades before everything starts to unravel. Then there are the poeple who do everything right---those who didn't have the high blood pressure, the extra body fat, the stressed out or living-on-the-edge life styles and they still have strokes and heart attacks, just like the before mentioned group. So, why on earth would you think it was your fault that your dad had another stroke? Your dad had a stroke because he's getting older and his body isn't brand-spanking new anymore. It's illogical to believe otherwise. Stop second guessing yourself, okay? You're not letting him down. You're not God. You're a daughter doing the best you can and, guess what, that's good enough.

 

Jean

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hiya.gif

I second guessed myself and carried the guilt with me also. Wondering if this and if that. Had I noticed the slight headache he had prior to the stroke, his slow gait, his tired look.. But as Jean said,, we are not God we do not have a Crystal ball that can tell us what will hapen not only tomorow but even the next milisecond..

 

We leave it in God's hands and do the best we can with the time we have left with them..

 

nono.gif No blaming any more.. You are doing the best you can and that is more than enough.. spoton.gif

 

pash.gif Take Care

Angie smile.gif

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Thank you, you're both right and I know that. I'll work on the self-esteem thing, I think that's my major problem. I just never really feel like I do anything right, lol. Thanks alot.. biggrin.gif

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Hi Cinder,

 

"Never feeling like you do anything right" is definitely a hold-over from your youth that you need to loss. (I read your other post in relationships.) You are a grown woman now who doesn't have to listen to that child within who is constantly trying to live up to someone else's standards. As an adult you are capable of making decisions, setting goals, and learning new things. As long as you do your best, then quit demanding more of yourself. Perfection is unachievable. You do not have to super-daughter strieving to make up for some preceived shortcomings from the past. You just have to love your dad now, while at the same time acknowledging that you a separate individual with the right to make mistakes, just like he did.

 

There isn't a person on this message board who hasn't played the what-if game--- survivors and caregivers alike---regarding that time frame in which a stroke occurred. But we cannot judge our actions with a hindsight view because we all know that had we also had a forward view we would have done things differently. We did not have that power. We are human, not gods.

 

Jean

 

 

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Jean, I've just read your post sevaral times and you're right. I know that. I play second guess constantly. I know it's a left over from childhood, I'm actually much better than I used to be. A few years ago I fell completely apart, and I lost a big piece of myself that I've never been able to find again. I've never survived a stroke, but I've survived depression, and therapists, and medication. I became someone else after that. I've always found it humorous that my father who played a part in my insecurities, was the one who helped me through that time. At my darkest moment is when he came to live with me. I pulled myself out because he needed me to. And I like to think that even though I lost that one part of myself, he helped me find a better part to take it's place. I'm forever grateful to him, because he gave me life...twice.

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Dad is still in the hospital. I could leave it at that because my whole life is based around that fact, lol. He had skin graft surgery 2 weeks ago. They removed a piece of his buttock and put it on his lower back. So now besides the 2 little ulcers, he has 2 wounds... I guess I don't need to tell anyone what this has done to him, and me. I can't really complain about his attitude and eating habits right now, he's doing well there. But if I'm honest I have to say that I haven't been able to see him for a week. I'm getting over a near bout with pneumonia. It started as sinusitis and took off from there. In Indiana we call me sick as a dog. Or was, I'm much better. I've been logging in and reading but haven't posted much. Anyway, I wasn't allowed to see him for obvious reasons. It's been very hard. The thing is last year he was in the hospital at this same time. Guess what..I got sick then too. Is it a mind thing..He's gone, quick get it out of your system fast? My friend said it's because 90% of the time I'm "cocooned" here in the house and when he's gone I get out more and my body hasn't built up a defense like "normal" people.. Then she said that I'm going daily to a place where they keep the sick people, of course I'll get sick. What ever the reason is, I'm almost well and hope to see him in the next couple of days. PS. His doc is "strongly suggesting" I place dad somewhere for SEVERAL weeks until he's sure no infection is forthcoming..What does anyone think about that?

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Hi Cinder,

 

What a bummer to be sick while you're dad is gone! Your friend has some pretty good logic going there. I've also heard the theory that caregivers (and moms) tend to 'hang on' as long as they are needed, and when they aren't, they 'allow themselves' to give into an illness that they've been fighting off. It's really not all that unusual, you know, the timing of your illness in relationship to your dad's hospitalization.

 

As to your question about putting your dad somewhere for a couple weeks, my opinion is that if his doctor is strongly advising this, then I'd strongly go along with it. Most of the time they release people from the hospital way too soon. Let him gather his strenght and you do the same with yours. Hang in there, lady!

 

Jean pash.gif

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Thank you Jean, your reply as usual is dead on. I know what he needs..it's just rough. I never expected him to be gone this long. I've taken this time to redo his room from ceiling to floor. Put in a new utility sink in what used to be a bathroom that I designed for him. He no longer needs it so I had to come up with something that fits his needs now. Doing all of that I guess wore me down. I was rushing it hoping he'd be home soon, and afraid he would..lol Now he's going to be gone longer. I think I may see if someone needs volunteer work somewhere in the area. I am after all a caregiver, and therefore not a sissy.. biggrin.gif

 

PS Does no one in this place sleep?

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Update..My brother was told last night that dad would be released wednesday. So today I was going to verify when..yada yada. But when I got up this morning there was a message saying he was getting out today instead. I called the hospital and was told that the nursing facility dad usually goes to had denied him with no reason given. So I called the home and asked to speak to the administrator, who told me that it was on record that I had withdrew dad the last time and took him to another facility. I denied this and asked him to check into it. He called back and said it had been a mistake (duh) but that there were other issues. Like dad not eating and refusing meds the last time he was there. I explained that it had been a rough time for dad, that he had just had another stroke and was still recovering, I told him that he was now on a med that really seemed to improve his attitude.. So he said he would call back. He did later and said that it was on record that dad's family weren't satisfied with the facility (sister) I told him that the person in question would be no problem and that I would make sure of it. He then called the hospital and verified thru nurse notes that dad was in good spirits and responding to all treatment and eating. He called me back and said looks like your dad would be a good cadidate for here after all. He then called again and said that dad had an outstanding account balance of several hundred dollars and they couldn't take him because of that, I asked to speak with billing because I didn't agree. Then he got back on the phone and told me that it was there mistake, they had never billed dad's insurance company after all (another DUH inserted here) He then said that he would contact the staff doctor and see if he would agree to treat dad while he's there. The doc agreed and as of right now I'm waiting to here what time dad is being transported. He will now be 5 minutes from home, which is why I wanted him there. It has been a stressful and frustrating day so far. I hope that dad keeps doing well and I can keep my sister's mouth shut for the next few weeks. I care about him too, and his integrity, but I also know they have a job to do and they do it. If there is anyway he's actually being hurt I will take care of it, like I do at home. She ticks me off sometimes, dad was almost blackballed at the only decent facility...lol

 

PS There was an incident when dad was at another home recovering where I saw something I didn't like at all, so I made arrangements and put dad in his chair and wheeled him across the street to another facility ( the one he currently uses) Somehow in the documenting of that, it got reversed.. flowers.gif

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Well after all the junk I went thru yesterday to get that place to take him, today dad (in his own way) told them to leave his tv off, his drapes shut..he refused meds and 2 meals. He wouldn't let them bathe or shave him. (sighs) Man I love that guy..if I didn't laugh at this I would cry. Like dad did this evening. I know he's very insecure right now, he knows where he is, he's not dumb. So I sat down and said, dad I know you're controlling anything you can right now, but you're choosing the wrong stuff. I don't care if you want the tv off, and the drapes closed. But you tell that brain in there that meds and eating are not a choice, they are a fact. I told him that he is not living there, it's just a pit stop. Someplace to get a breather before coming home. The thing is that I don't think he'll remember this 5 minutes after I leave. And he'll be alone.. I know I should have seen it before now, but tonight I looked at his lower back for the first time since surgery. I didn't want the visual memory of it with me..It's hard to explain. Anyway, I can't express enough how horrific the scar is, I can't believe as small as the ulcer was that he ended up with a wound that big..I'm going to have to do alot more research on this. I just can't get it out of my mind that he had to deal with the pain of this thing for the last few months..ramble ramble

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Cinder -

 

You and your Dad are in my thoughts and prayers today. I hope this day is better than the last and may they continue to vastly improve. I pray that you keep your spirit up your Dad needs you. smile.gif

 

Richard

 

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Hi Cinder,

I was reading your posts, sounds like you have really been through the ringer. Your dad is blessed to have you as his advocate and daughter. I can explain the scar thing-pressure sores are usually much deeper and wider than the ulcer you see once it finally reaches the surface of the skin. When surgery is done it has to be cleaned out totally of dead tissue or it will continue to get deeper and wider-that is why his scar is so big. Pressure sores are really hard to control, when my mom first had her stroke last summer I was flipping her around her bed constantly trying to avoid her getting one. Sometimes there is just no way to avoid them and all you can do is try to clean it out and get it to close. I hope your dad heals completely from this problem.

Suzy

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How do you know that decisions are for the best at the time you make them? So many of you seem to have it all together, I've been doing this for years and can't seem to get it right.. Dad's not talking to me. I can see in his eyes that I've hurt him by placing him in that place. His doc says he needs to stay.. He's needs to still be observed in a medical setting..yada yada.. We've been through so much together and I know we'll get through this too..But man it upsets me when he does the cold shoulder thing. He's basically pouting and it's working..lol I wish that each time I made the right choice a little bell would go off..Ding!! I could then relax. And I wish dad could hear the bell too... And since this is my fantasy and I'm rambling anyway, I wish dad was perfect physically and mentally, and enjoying his retirement out on some un-named lake pulling in a prize bass. There, now I feel better.

 

Ps..thanks to all that read these depressing posts and have warm thoughts for me and dad, and those that take the time in your own hectic lives to post and let me know that you understand. Thank you. Ronda

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