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Hi, my names Angela and I'm 25 years old. I happened upon this site while sitting on my laptop in the hospital and thought I would join as I enjoy forums and thought this may help me wade through the tough times I have ahead.

 

Almost 2 weeks ago my Dad had his first stroke, and was taken from work to the hospital. He was given TPA, and stayed in the hospital for almost 5 days. They released him to my care with a diagnosis of a left MCA stroke. His only real problems were some expressive aphasia and right hand weakness. We started his speech therapy, occupational therapy, and physical therapy and everything seemed to be starting off good.

 

Then thursday we went to his speech appointment and when he stood up he started to fall to his right side, was speaking gibberish, not following commands and was generally confused and disoriented. We rushed him to the hospital and after some tests he was admitted to a general room. The issue we had was he was in a different hospital for his first stroke because he was at work at the time and they rushed him from the local "bandage" hospital to the nearest hospital with a stroke unit which happened to be 45 minutes away from home and the hospital and doctors he normally see's. We got the information from the other hospital for a comparison and he was moved up to the progressive intensive care now after a nurse thought she had appreciated another deficit in the strength of his right hand.

 

He's been here for 3 days now and I think the wait and see game is starting to take it's toll. I haven't seen any of his doctors since his first day here and I'm uneasy about trying to get one of them to come down and talk to me for whatever reason. I know his nurse's have all said that so far the neurologist has said the damage from this stroke is extensive, but I have no idea what that details.

 

When I see him I know he recognizes me, and he can answer yes or no questions and does properly react to physical commands. He's done nothing but sleep for the past 3 days which I understand is what occurs after a stroke, but I'm wondering when I will have a realistic idea of how bad the damage is and what his recovery process looks like.

 

Doing it essentially alone doesn't help either. My fiance and I lived with my Dad to help him with his bills and now since Dad is out of work my fiance is working 7 days a week to try and keep us afloat. We know my Dad is going to need months of inpatient rehabilitation which is more then likely going to mean we need to look for a new smaller place to rent as we can't afford where we are now by ourselves.

 

I also have a brother who is mentally handicapped that I have to get squared away as well, but he has to do most of that on his own as he has been deemed able to make his own decisions reguarding legal matters and such (not even my Dad could get SSI or anything for him).

 

Outside of support from my fiance its all I really have. My brother doesn't listen to me. I call my extended family to keep them updated but they all live out of state and have decided that now is another prime time to lecture me on going back to work, what to do with my brother, keep Dad in a home, etc etc. They know neither myself or my dad are religious people, but have decided that all they are willing to tell me to do is pray, rather then drive the 15 minutes it would take for the few that live close to come sit at the hospital with me for a little bit.

 

Don't get me wrong, I know I need to care for myself to better help my Dad. I know I need to find work sometime soon so that my fiance and I can survive. But RIGHT NOW is not the time to lecture me. I can barely sleep at night right now, how am I going to find a job and work if I have to fight with myself right now to keep from crying or screaming. All they seem willing to do right now is try to add more to what is already a full plate.

 

This is long and I have rambled, if you read this all thank you. I'm just so overwhelemed right now I'm not even sure where to start.

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Hi Angela and welcome to the site. Yes, you have a definite plateful you are dealing with right now. Your Dad suffered a brain injury (atroke) and the brain tissue is swollen right now. His sleeping is indicative of the brain starting the healing process. As scared as you are, you can only imagine how he feels as he trys to grasp what happened to him.

 

You have a right to receive answers from Dad's medical team. Right now, you are his #1 advocate. As every stroke is different, as well as the recovery process, none of us can give you a specific timetable for progress. Have they started any therapy for him?

 

As to your family, sorry they only want to lecture. My suggestion would be, when you call to update them, tell them (not ask) what you need them to do. If they do not want to hear what they can do to help or don't want to help, then I'd reduce the calls I make to them. I know it sounds harsh but you are trying to do a lot on your own and need to be commended for what you are doing.

 

Please keep us posted on your Dad's progress and (((hugs))) to all of you.

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Hi Angela, First go to the Hospital offices and ask for a lisaon or social person. You can ask for the Dr's to meet with you and explain your Dad's current condition, etc. You can also ask about getting him signed up for SSDI.. social security disability benefits, contact his work ... human resources and see if he has short and or long term disability benefits.. get that started ASAP so there will be some money coming in to help.

 

Does hi family/regular Dr know he is in the hospital? you could ask him to visit and check on your dad .. and update you as well.

 

Get a notebook and write down everything you can. Dr's names, phone numbers, medications, etc. Try to set a routine as when you go to visit, so you can take some time away to contact doctors, look into another apartment if you have to, etc.

 

Call the relatives that live the closest and say I NEED you to sit with Dad on Tuesday from 3 to 4 or 7 to 8 or? whatever time you know they could, then use this time. to do things that need to be done, get away ... and make plans or whatever. sitting with him 8 or 10 hrs a day right now, is prbably not beneficial to either of you. YOU will need to be PROACTIVE in his care and finding out answers for him, and getting benefits or what ever needs done.

 

Make a list.. sort it into priorities.. talk with the social worker or hospital liason. you need a plan ... and where to start. Once you can see what needs to be done, you can be active in putting it in motion instead of sitting and feeling overwhelmed.

 

You are young at 25 to have to do this... but YOU CAN DO IT>>>

 

 

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Than you guys for the kind responses. A large part of his medical problems is that this is partly self induced from not taking care of himself at all since my Mom died 12 years ago. So he didn't have a regular doctor, etc. However, the hospital has been awesome by contacting his old doctors office and getting him a new primary physician and everything, who has come down to see him, etc.

 

I went back a while ago and spoke to his nurses some more and what not and she said that his doctors will be contacting me today or tomorrow about putting in a feeding tube, etc. For the time being since he is in ICU I mainly sit in the waiting room on the laptop and I walk back every hour or so for 15 to 20 minutes to check on him, talk to his nurses, talk to him, etc. I know my dad and he would kill me if I actually sat in his room for hours. It's just lonely sitting in the waiting room by myself, lets my mind wander and gets myself overwhelmed.

 

When I talk to my family I would tell them what I needed if I knew. I talked to the social worker here today and got the papers I need to fill out for medical power of attorney, and she even gave me paperwork for financial power of attorney that I can turn in somewhere else.

 

I started his short-term disability 2 weeks ago after the first stroke, but after it came the other day we now definitely know that it is nowhere near enough to continue as we were. I'm not however sure what his long-term disability benefits will be, I do know he has them however. I planned to call Monday about the long-term disability but I first need to find out how much his medical benefits will be and if we can afford to pay them because I was told by a couple family members that when you go onto long-term disability to keep your benefits you have to pay out of pocket for them.

 

I think right now alot of the outside aspects of what we can do will have to wait until business hours on Monday since most places aren't even open today.

 

It's just the whole wait and see thing is driving me bonkers. Which I understand as well, with my families history I know way more about strokes and heart attacks then someone my age probably should. I just wish there were some concrete answers outside of he's had another stroke.

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Welcome to Strokenet Angela,

 

Well for someone so young you've got a full plate don't you? Your father has had a huge shock to his body, so alot of sleeping is normal. You are his caregiver so you have a right to hear what's going on from the doctors, don't let anyone tell you it's not. I'm surprised that nurses are telling you more than the doctors, demand to speak to the doctors, and if you're not happy with what you hear, get a second opinion. Last thing, please get some rest, you're no good to yourself or your Dad if you are exhausted..

 

Take it easy and keep us updated on your dad's condition.

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Hi Angela,

Boy you do have a lot to worry about and do. I think if you go to the Social Security website you might be able to find out how much his SSDI will be. I got mine on the first try, but I was out of it and my family did it for me. Keeping a notebook is a very good idea. As soon as I was able I wrote down almost everything.

Good luck, and you and your Dad will be in my prayers.

Doug

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Dear Angela,

 

You have done a lot more than many people would in your situation. You are doing a super job of caring for your dad's practical needs. These things you are doing can be done only during normal business hours, so the week-end can be your time to breath easier as far as these matters are concerned. All of your questions can't be answered in a day, either. You'll be working with the governent and they go at only one speed - theirs. Your emergency is their routine. I know, I've been where you are.

 

This is also the time you need to take a few hours for yourself - and your fiance. It is important for you to do this so that you don't get sick from exhaustion and stress.

 

Now, for my lecture part - just as irritating as your relatives. The one thing that has saved my sanity over the past three years, caring form my triple stroke survivor husband is a deep and abiding faith. I don't know why we have the struggles we have in this world, but for me I have been blessed in so many ways through little miracles along this rocky road. I know there are thousands of folks who suffer stroke without the gift of a faith in a Higher Power. I'm sorry to say the suggestions you view as a lecture may be words that are meant to encourage you to seek a Power greater than yourself to help you, not hinder you as you travel this new road you are on. You see, even though you are resisting their suggestion, they may just have an important piece to this puzzle you find yourself immersed in.

 

I'm sorry they aren't stepping forward to come to the hospital, but maybe you need to ask them to come sit with you. It's got to be a two way street, dear. But, be prepared. Those same folks who won't come sit with you are the same ones who have promised to pray for you!

 

I can't come sit with you or I would....but I can pray for your dad, your brother, you and your fiance The road back is very slow and arduous.

 

Warmly,

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:welcome: ANGELA,

 

I'M GLAD YOU FOUND THIS SIGHT. IT HAS HELPED ME OUT TREMENDOUSLY. THERE ARE LOTS OF WARM, FRIENDLY PEOPLE HERE, SOME DEALING WITH EXACTLY WHAT YOU'RE GOING THROUGH. THERE'S TONS OF INFORMATION FOR YOU TO LEARN ABOUT.

 

SO FAR YOU'VE RECEIVED GREAT ADVICE FROM EVERYONE. I REMEMBER WHEN MY DAUGHTER RACHEL WAS IN THE HOSPITAL AFTER HER STROKE. IT WAS VERY OVERWHELMING. I PRAYED A LOT FOR STRENGTH, COURAGE, AND PEACE. RACHEL NEEDED ME AS YOUR DAD NEEDS YOU RIGHT NOW. YOU DO NEED TO SLEEP AND GET OUT EVERY NOW AND THEN.

 

I WOULD DEFINITELY TAKE THE ADVICE OF OTHERS AND REACH OUT TO FAMILY MEMBERS. THEY MIGHT BE ABLE TO HELP IF ONLY FOR A FEW HOURS HERE AND THERE.

 

IT SOUNDS LIKE YOUR DAD IS IN GOOD HANDS AT THE HOSPITAL. I KNOW HE IS GREATFUL THAT YOU ARE THERE FOR HIM. YOU'RE ARE DOING A GREAT JOB. KEEP US POSTED. :friends:

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I definitely don't view it as being a lecture from you here, you don't know me personally, etc. And I am completely understanding for them using prayer as a way for them to guide themselves through this time as well. In fact, I think it's great that they, like me, have there ways to center themselves and to help them cope through hard times. I do listen to them, and appreciate what they are saying, but when I try to get them to stop they just don't and it only furthers to upset and anger me because I'm not interested. I have my own path in life, that they just won't accept while I accept them and there beliefs. I think mostly with the family member in question, its mainly how they go about it as I have absolutely no problem with most other friends and family that say I am in there prayers, etc. I appreciate that from them, I just don't get the same thing from the family member in question and I think that is where my anger about the situation comes from.

 

But I also understand everyone is sick of hospitals, but the frustration is there because I'm sick of them too. To make a long story short, my Aunt died about 3 weeks ago after a massive stroke plus complications and was in CCU for about 2 weeks before we had to make the decision to remove her from life support. I spent most days up there with her then because we knew she was dying and we all wanted to spend our last time with her. So I know no one wants to be here, I just hate that they are also willing to just leave me alone. They tell me if I need anything to call, but the only thing I need is to see some family for a couple minutes and they're too busy/tired/whatever to come here or for me to come over.

 

I'm at the point now though that I have accepted that though, and I figure once they realize what is exactly going on then maybe they will come down here or let me come over for a bit, even if its just a couple minutes.

 

And I am taking care of myself, I only spent the past 3-4 days up here for 8-10 hours everyday because we weren't exactly sure what was going on and I wanted to be here to sign papers for treatments, fill out medical histories etc. I definitely know that I am no help to my dad if I get sick or stop taking care of myself, my fiance and my brother. I plan to set up some type of schedeule as far as days, times, etc that I am up here so I'm not just constantly sitting up here.

 

Thank you guys for the ideas and advice too. I talked to one of his doctors and he said right now we're just in wait and see mode. We know he has had an extensive left sided stroke this time and he's been sleeping it off. He and his nurses said come Monday the GI doc will be down to talk to me about a feeding tube for now, and his nuerologist is just going over his MRI's, etc.

 

I'm going to go out tonight and get a new notepad just for this as well as a date book, etc to keep better track of everything. Monday I'm going to start the calling and checking up on applications I have filled out online and stuff. It's amazing how much of this stuff can actually be done online. I also found a calculator for his SSDI and its looking like financially we should be okay once it goes through, the hospital also said they can help me with that and getting it through, etc.

 

I'll definitely keep you all updated, and I'm sure you will be seeing plenty of me over the coming months, as online is my hideaway instead of TV.

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Hi Angela, I know HOW hard it is to NOT be there, I have gone through caregiving and family illness before. I am glad to hear you are taking care of yourself. There are always a relative or 2 that get "under" your skin.. and can always manage to lecture or "harp". Maybe it is their own fear, or way of coping, but I know the feeling of wanting to stick a sock in their mouth.. and then duct tape it for good measure.

 

Maybe one of the relatives could help with your brother.. check on him, or ?? some things that you did for him, they could take over for now.

 

I'm glad someone from the Hospital is helping you, there is always so much paper work and forms....

 

Yes ... unfortunately stroke is kind of a wait and see.. the brain is amazing, so very unpredictable for Dr's to say for sure what will come back or not.

 

So about all I can say.. is we are here for you, and thinking warm thoughts for you all ((((((((((((((hugs))))))))))) Bonnie

 

 

 

 

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hi angela. bless your heart for all you are dealing with now. i know your dad would be so proud of you for all you are doing for him. he will be recovering for quite awhile now. everyone has given you great suggestions and you are acting on them which is a great start in the right direction. i hope things start to settle down for you very soon. i will keep you and your family in my prayers. good luck and god bless you all. i'm sorry your family has to act like this in your time of need, hopefully they will come around for you real soon. keep us posted on how your dad is doing. there are some great books out there and here on our website explaining about stroke for caregivers. also you can receive free magazines frome the nsa(national stroke assoc) and the ama(american stroke assoc) which provide alot of good info. you can also go online to subscribe to them.

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Hi Angela,

 

Overwhelming stuff you're going through... I know. I sat with my son through several weeks in the hospital. I'd get SO tired but if I went home I couldn't sleep anyway. He's home now and doing much better. I still do it one day at a time. His recovery will take a very long time.

 

I understand your frustration as well. I was a worried mother but I'm also an RN which sometimes made things easier but at times it was harder because I'd wonder, "Is this what they tell people when they think they don't know any better?"

 

A few things that helped me cope:

 

Ask a physician to write a disability statement and a hospital social worker can initiate his Social Security claim. A disability

representative interviewed me at the hospital and made that process much easier.

 

I made a list of issues I wanted to address starting at Joey's head and going right down to his toes. Things like, "He's losing his

hair from just laying on his back. Should he be repositioned more frequently?" "He's complaining of pain in his shoulder, have you

ruled out an injury there?" "You think he's asking for too much pain medication. Maybe he's using it for anxiety and depression.

Could we get a psych consult?" You know your dad. Trust your intuition and get your questions answered.

 

A hospital liaison is a very good idea. I asked just once to talk to a "patient's rights advocate" and the issues I had for her were

resolved just because the staff was more aware that I intended to insure that he would recieve the best possible care.

 

Joey did have excellent care and is making a miraculous recovery. I got tired of people saying, "It's just a miracle he's still alive." I belive that with all my heart but since he is going to live...let's get busy making sure he has the best life possible.

 

I did take time for myself. I made sure I called someone outside the family every day. I took time to pray and meditate. I belong to a support group for my own issues and made sure I got to a meeting every day.

 

You're a remarkable young woman. My prayers are with you, your fiance, your father...and your family. I'm glad you found this site. I visit here as often as I can.

 

I'll follow your family's progress with sincere interest.

 

Lorri

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hi angela,

everyone has given you such thoughtful and also practical replies and i just want to add that you and your dad will be in my thoughts.you have been given an overflowing plate. do the best you can and take care of yourself in the process. please keep us posted as to your dad's recovery. kathy

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Thank you guys for all of the kind words, they really mean alot to me :).

 

I finally got my new modem at home so hopefully I can post more :).

 

My Dads doing well. He passed his second swallowing test with minimal difficulty, but the doctors and I were still worried about how well he could eat so I agreed for him to have a feeding tube placed for now. After his surgery for that they moved him out of the PICU for a day and then transfered him to a nursing rehabilitation center just the day before. Hopefully he will keep improving at the rate he has been. He's no longer sleeping as much and he's much more alert so things are definitely looking up :D!

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Thank you so much for the update. Glad to hear your Dad is progressing. Continued prayers and (((hugs))) coming out to you.

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Hi Angela, Thanks so Much for the update... and GOOD news. Wishing continued improvement for your dad.

 

Sincerely hoping things are coming together for you all.

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aloha angela,

 

i've been following the posts concerning the situation with your dad. it's great news that your dad is improving since your initial post! i'm sure things will continue to improve and i hope you've been able to focus on your own personal matters. hang in there, stay strong and stand firm. remember that there are are many of us here who are in your corner! take time to enjoy the holiday! :ChristmasTree: :santasmiley:

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Was just going to give another update. I'm still at a loss really. Physically he is doing great, but honestly that isn't where my concerns lie. I have no doubts he will walk again, etc as he is a strong guy. My worries are with him cognitively. Everytime I go to see him, I'm just hoping he will be slightly better, and every now and then there is a glimpse of it. I'd say out of the past month I have had one day for about an hour where it seemed like he actually knew who I was and what I was saying to him. The rest of the time he is like a space cadet. I can tell, knowing my Dad that he isn't "there". I'm sure some of you here know what I am talking about. I've tried explaining it to his nurses and doctor but I don't think they understand me. I've tried to explain to them just how intelligent and well spoken my Dad was, and how he is absolutely nothing like he was in any way shape or form, but it feels like they think I'm saying this because he's my Dad. Not because it's how he is.

 

Then the day before new years I got a call that he was being sent back to the hospital from the rehab facility because he had ripped his feeding tube out. Now, don't get me wrong, my Dad is your typical guy in that he hates doctors, hospitals, etc. However if he was in his "right mind" he wouldn't do something like that, because before this second stroke he was determined to do whatever the doctors told him to do to get better. Then while at the hospital he ripped out his IV and broke it up into pieces. So when I could finally get up there they had both his good arm and his paralyzed arm restrained.

 

He's still incontinent. He constantly fidgets and tries to turn this way and that in his bed, so much so they had to put bumpers on the sides of his bed because at one point he got his leg stuck and cut his leg on the rails of his bed. He doesn't talk really, and the few things you can get him to gruffly say you have to ask him 5 to 6 times and even then you most likely won't get an answer.

 

They called me tonight at 2am to tell me they are sending him back to the hospital because he has blood around his peg tube and he just got back there today. I know its for his safety, but every time he is moved around like that he gets lost and seems to regress further every time. I just haven't seen any cognitive improvement from him outside of an hour when I really do think he knew I was there and could understand me.

 

None of my family is helping me. My fiance and I are the only ones who go and see him and I can only go every other day for about an hour as my fiance is working 12+ hours a day to try to pay some of our house bills now. I'm also looking for work which will make it even harder for me to see him. The doctors are asking me at what level do I think I can care for him, and while I would love to say any, I know that mentally I cannot handle bathing him or changing depends. I also know I am not physically strong enough to do it. I can't even move or adjust how he is sitting n his bed at the hospital without help.

 

I hate to say it, but it feels like he has given up. I hate it, but I know it is true. My Dad gave up on his own life 12 years ago when my Mom died, and the only reason he kept on living was for my brother and I he told me. But now I just feel like he has totally given up. I look into his face and all I see is sadness and desperation. And I know giving up is the last thing that will help him, but I really don't know what to do :(.

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Hi Angela,

 

I think you are absolutely right when you honestly consider what you can do as far a physical caregiving for your dad. You aren't determined you can do something that in your heart you know you can't.

 

As others have said these first weeks and months post stroke are really, really tumultuous. I remember those months after my husband's strokes and we were in the hospital so often the nurses and doctors acknowledged me! We live in a fairly large city and he was in a six story hospital! Anyway, this past year he was hospitalized only once.

 

I have been amazed, over the years that the medical community really does understand the impact stroke has on patients cognitively. Depending on the damage so much can be done to restore amazing portions of the cognitive abilities, but most stroke survivors who have these issues and recover a large portion of their cognitive abilities can identify their weaknesses. As wiith my husband, not all are fortunate enough to regain skills we take for granted.

 

One of the things Bill did was to routinely remove his IVs. The last time he was hospitalized he didn't remove it though until he removed the line they left in. That was an improvement. Since he has such limited short-term memory it's difficult to make him understand he must leave well enough alone. He has his own agenda!

 

Another lady posted yesterday about some practical issues we deal with when our survivor suffers the cognitive assault. It's so hard for people to look at these grown men and understand they don't know how to make a phone call, use a remote control, prepare anything to eat, or even know the sequence necessary to dress themselves - let alone know their phone number or address. I don't know whether your dad will face these challenges long term or not. You probably aren't imagining he isn't himself right now though. As with others, I'd encourage all the rehab possible! Time is the bes healer, as you will see during the next weeks and months.

 

Warmly,

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Guest bessy

hi angelia so glad you foundus even though itwasnotunder the best of timesno matterwhat you found stroke net where weal getteogther inaafter noon :chat: ora evening :chat: justto chitchatwith1another the jostsherearejust greatat what they do and the membersare careing peopleaswell so pop into a :chat: some time soon

 

 

BESSY :big_grin:

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