Dad

[jriva]

 

Hi Cinder,

 

Self doubt is hard! Lack of self-confidence is hard! But you know what? All any of us can do is our best, so stop being so hard on yourself. Okay? We listen to the doctors, and do a little research on our own, then filter it all through our own sense of logic and hope we've made the right choices. I'll bet you know in your head that your dad belongs where he is right now. But your heart wants to please your dad, which means doing something against his long term best interest. Thus the internal fight. It's in situations like this that you need to borrow my mantra and tell yourself: "Caregiving is not for sissies!"

 

Hang in there! As soon as you're able to bring your dad home, he'll quit pouting. Just keep telling him you love him and that as soon as the doctor says he can come home, you'll be there with bells on.

 

Jean

[cinder]

Thank you Jean. Caregiving is not for sissies, caregiving is not for sissies... You know it just occurred to me that not once in my life has anyone ever called me a sissy. Umm..except maybe when there's a spider around, you know how that can be.. Anyway, I can deal easily with things outside my comfort zone with dad, like daily cleanup, dressing changes etc. But man you're right, as soon as he starts messing with my heart it's a killer. I can disassociate myself alot better when I'm dealing with the physical. I don't know if anyone realizes how difficult it can be having to take care of your father's personal needs. Especially when you're a daughter. But then again as I think, you do know don't you Jean. I don't know where I'm going with this..lol So I'll just say yes, I know he needs this time, no I'm not pulling him out because he's pouting. I made the right call here, and will continue to do so in his best long term interest. If I'm ever going to feel that I have mastered this role, it will take all of me to do it. Heart and head together.

[jriva]

 

Hi Cinder,

 

You're Sooo right about the daughter/father role getting in the way when caregiver chores are involved. I share-cared my father for five years and I remember all to well the first time I had to help him with a diaper. I didn't think I'd ever be able to look him in the eye again, we were both so embarassed.

 

But I can tell you one thing. There will come a day when you will be Sooo proud of yourself for the sacrifices you are making now, for the amount of heart you are putting into your caregiver role, and for the special relationship that is growing out of this role reversal.

 

Jean

[cinder]

In case anyone was wondering, Dad decided he was talking to me today. Of course he only said two things. One comment was" feed this"..lol Which meant he couldn't handle eating the soup alone, so I helped. He ate all of his dinner. It was great! The second comment was to tell me he loved me when I was leaving..

[cinder]

The "facility" ran blood work on dad, called and told me today that his blood count was down again..Sooo tomorrow he will be going to the local hospital for the day while he receives 2!!! units of blood. I tell you I'm at a loss here. Every test known to man and no one knows why he's not producing blood. Everything I've read still points to bone disease. Maybe an antibiotic he was on complicated production, I don't know. It's just frightening, this is a serious one. Any ideas? Also does anyone know if blood transfusions can be done in the home?

I asked my mom about something my grandmother went thru a year before she passed, apparently she also stopped producing blood and needed transfusions weekly. So this isn't really unheard of. Unfortunately they didn't know why she did this either.

[suzy]

 

Hi Cinder:

Sorry to hear your dad is having another struggle. I am a nurse and can not tell you why this is happening. Sounds like they are trying to figure it out. Just keep asking his doctors. It would help to know what you mean when you say his count is low. Is it his platelet count? I can tell you that they will not do blood transfusions at home that is a definate. That is something that must be done under medical supervision. I hope the transfusions went well and that he is feeling better soon. I will keep praying for him...

Suzy

[cinder]

Update: The local hospital where dad's blood has been monitored for the last two days called this morning and said dad's count was going down again. After conferring with his doctor we decided to transfer him back to the hospital out of town where he had spent the last several weeks. The local hospital wouldn't help with this because for some reason they don't like patients leaving and going somewhere else.. Sooo we made the arrangements for transport ourselves. After the admittance process (again) Dad was put on the only floor with an open bed (maternity) We then waited for hours for his surgeon who had done the flap surgery weeks ago to show up. After he did he checked dad out and said that the flap was full of blood. He said it needed to be drained..and I swear the next thing I witnessed actually occurred. He got a pad of gauze ready and rolled dad over, then (in dad's room) takes a small pair of scissors and sticks them into the seam of dad's healing scar, then he pressed on the area and this gelled blood comes out. He says this blood is over a week old. He then went a few inches down and stuck him again. I guess I was in shock or something, but after the second poke I went around the bed to look at dad's reaction to this. He looked at me and I could tell he could feel it all, so I said dad, how are you? He said, it hurts. I looked at the doc and he said Ron, can you feel what I'm doing? Dad said ,Yes.. So the doc then put his stuff away and said I'll put him under to finish (DUH!!) The doc later told me that because the area he jabbed was scar tissue dad should not have felt it..But you have to wonder..ya know? Anyway, at the time chat was going on tonight I was sitting in a waiting room...waiting. The doc ended up having to open dad's entire scar. It was packed with old blood. Apparently a blood vessel had broken inside and dad was slowly bleeding to death. Hence all the transfusions. The surgeon said that this is the first time so long into healing he has seen this, it's so rare it never occurred to anyone that this was the problem. After it was all done dad came out of recovery wide eyed and seemingly ok. The thing is this, if this was a busted vessel that had closed about a week ago, where is the blood dad got 2 days ago? He said there was no new blood in there. I saw it, it was yucky and clotted. They are going to keep him to heal again, and run tests to determine counts etc... I just got home a little while ago. Shoot I forgot to call the "facility" to tell them dad won't be coming back for a while, I think they hold a room for 30 days. Anyway, dad needs hopes and prayers that they fixed the blood loss problem, and for strength because I think he's about had it emotionally. Which I would too. We both need strength. I'm so sorry about chat, I had a good time last week and was looking forward to it. Next week barring emergency surgery and mysterious blood loss I'll be there for sure

[jriva]

Hi Cinder,

 

Except for the part about being on the maternity floor---there's humor to be found in every situation---it sounds like your dad is in the right place to get to the bottom of what is going on. At least they are on the hunt and that is a good thing to take comfort in! I can sure see why you and your dad are emotionally drainaged, but things could turn around, once they get to the bottom of your mystery. You'll know more in a few days and knowing is always easier to deal with than the unknown. Hang in there.

 

Jean

 

 

[cinder]

Jean when they said maternity I looked at dad and said, ok it's now official you've been on every floor of this hospital. PS I just realized that I had my nights confused (again) Last night was not chat, it's tonight..lol So I'll be there if I'm back from seeing dad..

 

I edited this because it's not fair to dad to use something he says without asking him if I can do it. (Even if I found it amusing)

[cinder]

In case anyone still reads this thread: Dad is still in the hospital. His wound is still draining. His kidney's are malfunctioning. Well, let me rephrase that, a test involving his kidneys came back abnormal. They put him on something to help deal with it and are doing further tests. I hate tests. I hate ulcers. I hate skin graphs. I hate nurses that make me feel like a family member and not a caregiver. But man I sure do love dad..

[jriva]

 

Cinder,

 

Maybe you could get a tee shirt made up with 'caregiver' splashed across your chest then go into the hospital and knock a few nurses' heads together. Seriously, it sounds like they are one step closer to figuring out your dad's problems. The waiting is the worst, isn't it?! Hang in there.

 

Jean

[pprovost]

Hi Cinder,

Your posts about your dad have touched me in that I would have loved to be the daughter to my own father as you are for your Dad. My Dad died of heart failure two years before my stroke and I still regret that I was not available to be closer to him other than a few hospital visits and phone calls. Relish this time with him no matter how awful it gets sometimes. Your loving devotion is very apparent in your writing. I envy you

 

be well for both of you,

 

Pat

[cinder]

Thank you all so much. It's been such a stressful day. It's great to come in here and see that people who don't even know us care about how we are. I do cherish this time, and I know it will always stand out in my mind as an enriching and wonderful period of my life..thanks again

[cinder]

I had a terrible dream about Dad and his situation last night. I awoke feeling shaky and unsure. Then out of no where first thing this morning I am told he is being released back to the "facility" today. He will continued to be monitored for blood count and kidney function. I am going to try to get him home within the week if all goes well.. Yesterday when I walked in to see him he had his left hand in the air and was trying with all his might to get his right one up there too. I said, What are you doing dad? He said, Fishing. (lol) I said, did you catch any? He said not yet. I said well if you do let me know, I would love to see it... If dad's mind can create a little pleasure for him once in a while who am I to argue.

 

Has anyone ever had their survivor leave for so long that they feel themself slipping out of caregiver mode? I would like to be back into the zone before he comes home..lol It's kinda hard to do without him here. I guess I'm just worried now that we're finally so close and I actually think all the major problems have been taken care of. We still have the catheter dilemma though. He can't have one long term, and we can't go without because of skin breakdown. So the only other option is basically called in-out cathing. Where he is cathed manually several times a day. Guess who gets to do that? And here I thought I had done it all. He had a supra pubic cath last year that we tried, but he pulled it out twice. The first time I replaced it with a new one myself (it had to be replaced immediately or the hole would close) after the second time the doc and I decided he was going to hurt himself if he continued to do it. I'm not looking forward to doing this cath thing, but I will do what i takes to keep him healthy and home, and dry. Anyone have experience with this?

[gatorlynn]

Cinder

 

In and out caths are a piece of cake. Much easier on a male where it is obvious where the tube goes of course.

 

I have worked with children with paralysis who learn to do it themselves. In fact you will find it easier than changing depends.

 

Glad things are looking up.

[cinder]

Dad's been back at the "facility" since Friday. He seems to have adapted well mentally and emotionally. Physically we have another problem. Actually several. His skin on the wound has become red, they fear the staples are getting infected so they replaced the catheter. His kidneys are still showing abnormalities but I guess a kidney infection is the lesser of the two evils. And he's not eating enough. Which, as we all know, good nutrition goes hand in hand with healthy skin. His blood pressure today was 90/42.. No one knows why though. I was going to type that I'm sick and tired of all this, but that would be wrong. My dad is the one who's sick and tired, he's the one who has to endure these things. I guess it finally hit me tonight that Dad won't be here for Christmas. I had thought we would make it before the last emergency, but I don't think so anymore... How do I tell him? Do I? Or do I hope he doesn't notice and have it when he comes home? Sheesh.. I repeat I hate diabetes, ulcers, catheters..Basically I hate everything associated with stroke..But I'm not alone here.

[jriva]

 

Hi Cinder,

 

My dad died on Christmas day and several weeks before that we had to put him in a hospice home because I had fallen, broke my elbow and had to have it screwed back together. Then it was put in a cast. So, I could not care for him anymore---by then I had been living with him for several months. Anyway, I truly understand your pain at not having your dad at home for the holidays. And I understand your dilemma. However, I don't think you can avoid telling your dad that Christmas is coming and that he probably won't make it home. It will be all around him at the facility and to not talk about would be like living with an elephant in the room. Besides that, it will give you each an opportunity to console the other and to do whatever you can to make it the best Christmas you can, under the cirumstances. If it were me, I wouldn't postpone your holiday celebration until he comes home. None of us knows the future. None of us knows how many days we each have; make the most of each one you have with your dad. And maybe next year, you two can really kick up your heels.

 

Jean

[cinder]

My dad's first stroke was on Dec.23. I had gone to his house to give him a present and he was packing to go to Mississippi. He said he saw no reason to hang around just for Christmas. He as usual had no gift for me so I wished him a good trip. When I got home I called my sis and told her to go see him, that he'd seemed kinda down to me, more than usual. She said she was mad at him for leaving at Christmas and she wasn't going. I said, you never know what's going to happen, I'd hate for you to be mad at him.. I've never had a more prophetic moment in my life. Dad stroked that evening apparently on his drive. How he made it to Biloxi, Mississippi is a mysterious miracle. He sat in a parking lot for several hours before he could remember his brother's phone number. They came and got him and took him to a hospital.

Dad's never really been into Christmas with the family kind of thing. But since he's been with me I've always tried to make it special for him. You're right Jean, I can't act like it's not there. I think I will get a small live tree at the farm and take it to his room. That way if he doesn't remember he had Christmas, I can keep it up here at home for him. But then again do you think he will see it every time he opens his eyes and get depressed all over again? Maybe it will be a symbol though that someone cares.

Too many freaking dilemmas!!! I'm just a caregiver for crying out loud!! (but I'm not whining, honest) I just am having a hard time knowing how to handle everything for dad's mental wellbeing..Physically he's out of my hands right now, but emotionally I'm still caring for him. Man, even I didn't understand that one and I wrote it.

[cinder]

Someday I'm going to come in here and type, Guess what! Dad's home..Someday I'll type, No problems with Dad today..Someday I'll take my laptop into him and help him type a greeting. Someday. But not today. I went to see him this morning, his blood work had come back showing an infection somewhere. His chest xrays were clear. I had been told he was put on an antibiotic and seemed to be doing better. But when I went in to see him I knew they were wrong. I could hear the congestion in his chest and he wasn't looking very good. I said, Dad I'm taking you to the hospital today, you don't sound that great and we don't want it to turn into something bad. I knew dad was in bad shape when he didn't argue, he just nodded. So I went out to the nurse and made arrangements to have him taken to the ER at his favorite hospital. I then called my siblings and his own doctor. I just got home about half an hour ago, from another long stressful and frightening day. I've never had a doctor pull me out of dad's room before and ask me if I expected him to live long term. I haven't been asked about life support either. But both happened today. Dad's lungs were saturating at 55% when he got there. There wasn't enough room in them for more air than that. After suctioning he came up a little and a breathing tube wasn't needed. Oddly enough another xray showed clear. His doctor said he doesn't care what it shows, he thinks dad has a respiratory infection. And a kidney infection. It took 5 hours of dad in the ER before a bed was ready. I had already made them get him off of the hard ER bed and onto a softer bed because I knew his wound must be hurting.

So much happens in such a small amount of time, that it's hard to keep my thoughts together. Believe it or not I've ran out of words right now. I feel very empty and there's a stone sitting on my chest. That doctor scared the crap out of me. I really must work on my reaction skills. After all this time and all we've been through, you'd think I would be more prepared for the unforeseen.

I asked myself today, when does it stop? But I guess it doesn't, does it? There is no road anymore. No path to follow. I can't control anything going on and I don't feel like a caregiver anymore. I feel like..heck I don't know what I feel like. I'm so upset for him that I could very easily cry, in fact I think I will. I was worried about Dad not being home at Christmas, it really brings into perspective the things that are really important. Like Dad not being here at all on Christmas.

[jriva]

 

Hi Cinder,

 

I wish I could reach through your computer screen and give you a hug.Your dad's got so many things working against him medically right now, but he's still got one very important, postive going in his life: you. Make the most of it. You don't have to be his caregiver right now. You don't have to be strong every waking minute. You just have to be the daughter who has come to love him. The daughter who should cry when you feel the need, and the daughter who can and WILL do whatever it takes to see that he gets what he needs, when he needs it in the hospital.

 

It's really HARD to watch a parent's health fail. I've done it twice, so I know the pain you are in. The day I signed the DNR order on my dad was one of the most difficult days of my life. If DNR orders and talk of life support didn't make us feel empty and twisted inside and like an elephant is sitting on our chests, we wouldn't be human. No one is prepared for that. All you can do at this point in time is hope for the best, but prepare yourself emotionally for the worst. And know that whatever happens you've got friends here that really care about you!

 

Jean

[virgilwilliamson]

Cinder,

I am new here but I feel your pain. My dad had his stroke 7 days before my daughter was born 5 days before his 56th birthday. Tomorrow he will turn 66 in the hospital again. My dad is a diabetic, a severe dibetic, since his stroke he has had many amputations, his first was two of his toes 1 year after his stroke, then he lost his right leg below the knee again around his birthday but his birthday was celebrated just before the amputation(surgeon allowed him to wait a few days before the surgery. The next birthday started dads longest stay in the hospital 100 days in icu, due to a infection due to a infection after he had the lower lobe of his right lung removed due to a bleed that started because of the blood thinners a med that was given to save his life, after icu he spent another month in the hospital just trying to get him strong enough to go home no nursing home for our dad, we took him home. The next few birthday's were spent at home. My sister and her family took care of him in their home until he was able to get into his own apartment with the family doing the cleaning, he did everything else himself. Then dad decided to go to the bathroom and somehow ended up falling down breaking his back and splitting his head open, he laid there overnight talk about guilt, no one went to his apartment till about 11a.m now dad was totaly confined to a wheel chair. Of course he refused to lay down till late so we started the amputations again, he lost three in a year then my sister who was dads caregiver moved to wisconsin, now I came to be his care giver driving a 40 miles 80 round trip twice a day I would drop the kids off at school take care of dad till I went to get the kids then drive back up and put dad in bed take my kids home tuck them in bed, till the next day I did this for 2 years then my older sister found out she could get paid for helping dad, I would not take a dime, I felt it was just not right, she did well until my sister moved back and then she became abusive to dad for a reason we do not know, she had done well for 4 or 5 months now my other sister took back over the job moving dad into her home, but then a well meaning therapist came in and told my sister she could face neglect charges if the wrong person found out dad was being left alone four hours a day. So they told her he had to go into the nursing home or else she would make sure charges were filed. In the nursing home dad got his first bed sore, then one day I noticed they had a tennis shoe on his foot I took it off to find a sore on his heal and the top of his foot, I told them no tennis shoes he had not worn shoes in years. I then started noticing more and more bandages on his legs, just scratches they told me but would not let me remove the bandages, but I did ulcers were forming not scratches. I knew I would not make it up much when school started, but again now the guilt even though I called every other day they always said he was getting better. I mid october my mom got a call even though they have not been married in years and they knew both my sisters and my numbers and told her they were sending him to the hospital, his ulcers were infected. I know now you all want to know how did this happen because my sister and I thought they were telling the truth and between all three of the kids sports I never seemed to have time to get up to see him. He was in the hospital for 10 days and we found what we thought was a better nursing home, but this one refused to give him the basic needs to live a simple antibotic and fluids because he told the surgeon of their choice he would die with his remaining leg. My sister and I abounded our families and went every day to see dad we watched as he went from a strong willed man to someone who acted afraid of his own shadow. The finale straw was last tuesday when the therapist was trying to force dad to stand while he was throwing up I said I had seen enough he was going to the hospital. The nursing home doctor said I would be arrested if I took him out needless to say I went to my sisters work place(she is his power of health) and we went in as a united front and 2 hours later dad in tears we finaly made it to the hospital, on wednesday our family surgeon was allowed to see him and he allowed him to remove the leg friday. Now we are waiting dad started swelling saturday and they have not told us why, so tomorrow my dads 66th birthday he will again spend his birthday in a hospital. So Cinder you know your dad the best remember whatever decisions you have made or will make never let anyone make yourself doubt yourself and your feelings are never wrong no matter how horriable they may seem to even yourself, last tuesday my sister and I begged that god would end dads suffering and he has for now.

[cinder]

Virgil, thank you for your post. I can see easily from reading it that dad could be in much worse shape. I feel thankful at this moment that he has had no amputations Even though he too is diabetic, other than a weak immune system he's only had a few sores on his legs. And these were treated and healed. I guess as the saying goes, if you think you have it rough, take a look around. Please don't feel guilty. You stepped up several times, for years to do what needed to be done, and this last time you did it in time to save his life.

[cinder]

I could have placed it anywhere, and I almost did without realizing it. But I'm putting my 150th post here, where it belongs. Dad is after all the reason I came here in the first place. A small tribute to him and all he's taught me. This one's for you Dad, I love you.

Thank you, to all of you that have taken time to bring a stranger in off of a cold doorstep. I was there so long by myself. I can't tell you how much I appreciate the listening and the advice, the knowledge and the warm hugs.

I specifically want to thank Jean (mom) for spending so much time talking to me, and reminding me to laugh. Ronda

[jriva]

 

 

Hi Cinder,

 

Congratulations on reaching your 150th post and getting your mentor status. You've become a valueable voice on this message board---you give back as much as you get here.

 

Jean

 

P.S. I hope you don't mind that I still calling you Cinder instead of Ronda. Every time I see the word 'Cinder' I'm reminded of that mythic bird you wrote about in your poem (that is posted in the Inspirational Thoughts forum) and how a woman with a beautiful mind and spirit grew from a cinder of her past.

[cinder]

Yesterday I was told that dad was to be released today. I went to see him and he told me he had just gotten back from fishing. He had only caught a small one though. I told him the next time he goes I wanted him to dress warmer because he sounded congested. I then went and found the nurse and told her the same thing. I asked her to have his doctor re-evaluate dad for release because he sounded so bad. Today first thing this morning the doc called and told me all of dad's xrays were clear..there were guidlines and dad couldn't stay just because he was on an antibiotic. So they were releasing him to go back to the facility in a short while. Half an hour later I missed a call from a doctor I didn't know. When I called back I was told that when the nurse went in to get dad ready to go, she found him non-responsive, and barely breathing. His blood pressure was too low to register, his kidneys had stopped and blood started coming out his catheter. The doctor who had called me was a lung specialist who happened to be on the floor at the time. Dad went to ICU where he was put on life support. His lungs were functioning at 20%. When I got there he was still out, and they did all of their ICU stuff to him. They did cat scans on everything, ALL negative. Absolutely nothing was found except the original infection he was being treated for. Dad stayed unconscious for 5 hours until he decided to open his eyes and look at us. My sister said, Dad are you ok? And dad nodded. Right now his lungs are at 40% and he can nod to questions (because of the breathing tube) His condition is guarded but hopeful (whatever that means) I thought all day long that this was it, then he woke up. I don't know what the night will bring, or tomorrow. All I know is I got to talk to him today, when I thought I couldn't anymore. I told him everthing I needed to. He wanted to tell me something too, but he couldn't. Tomorrow I'm taking an erase board and see how he does with that. It's been another long emotional day.