tara1 Posted February 21, 2007 Share Posted February 21, 2007 I am posting on this site for the first time. My fiancee', 52 yrs old had a left sided cva in July '06. He has been left with right sided hemiparisis and global aphasia. The stroke was caused by complete blockages in both of his internal carotid arteries. We have been through two surgeries already to try to restore some more blood flow to the brain. Neither of them has worked. There is nothing left to do. He is a time bomb just waiting to go off. I had finally gotten up the guts to leave my alcoholic husband and moved in with Jack. He has been the father that my three children never had. I have never been more loved or taken care of in my life. We had almost two wonderful years together and then he had the stroke. Being as we are not married, all the legal things that had to be done were very difficult. I do have power of attorney. This has made his children, ages 22 and 24 extremely angry. They have been to see their father less than 5 times. They live within 3 hours. They do not call, and I have stopped calling them to give them updates. Jack has a sister and brother nearby who do help out sometimes when I go to work. But I feel as if I am asking them for a favor. So most of the time my 68 yr old mother comes to stay with Jack and the kids. The temporary state disability stopped in November and Social Security will finally start at the end of this month. The hoops that I had to jump through to get that were unbelievable. They do not like to appoint somebody other than a family member to be the payee. As of right now I have paid every one of Jack's bills, including his cobra insurance each month, all co-pays for doctors, surgeons, hospitals, and meds. His medication in over 250.00 a month. Our mortgage each month is $1600.00, car insurance, and all other bills, and daily living expenses. I know it sounds trite to complain about money, but I am literally financially devastated. I am a bartender who is now working 2 jobs, 6 days a week. Plus taking care of Jack and three children. I have to take him to all his dr's appts. on my one day off. There are days that I go to work at 9:00 am (yes, people drink at 9:00 am) and work until last call at 2:00 am. Between 6&7 pm I go from one job to the other after stopping at home to check and make sure everybody is okay. I am 37 yrs old and feel like I am 87. I really am at the end of my rope. I am so depressed all the time that life just doesn't seem worth it anymore. Jack has been in and out of rehab, inpatient and outpatient nothing has helped. Insurance is exhausted on all rehab now. I feel guilty because I know there is more I could do at home for him as far as exercises and speech therapy go, but there are no more hours left in the day. Jack is decompensating because he is not one to push himself. He seems content to just watch tv all day. I know this is not good but I don't have the time or money to do anything else for him. There are times that I pray that I won't wake up in the morning. I just don't see any light at the end of this tunnel. Please somebody tell me that things will get better. I know that Jack is the one who had the stroke and I couldn't possibly understand what that must be like for him, but I seem to be the only one who has to deal with it. Thank you all for letting my rant. I think I just needed to get this off of my chest. Tara Link to comment Share on other sites More sharing options...
fking Posted February 21, 2007 Share Posted February 21, 2007 Tara, I welcome you to the site. Thanks for joining and communicating with us about yourself and Jack. I understand your position in this relationship and the concern of your kids having a father figure in the house. I've been there a couple times myself. You certainly have a plate full being the provider in the household. You can't afford to not work with the bills you have. I can tell you that things will get better, but that depends on so many factors in Jack's stroke condition and what he is able to do at this time. You stated all his rehab has been exausted and you didn't say if he's wheelchair bound or can walk with help. I feel you got to think of getting his arteries open and blood flowing again first. It's little baby steps, first things first, then in time things will began to come together for you. Right now, it's tough on you and him. You came to the right place for support and talk with other survivors and caregivers. Check back often and read comments from others. You are not alone, we have all been there, just farther along in some cases. Stay strong and stay here for support. Link to comment Share on other sites More sharing options...
lisas Posted February 21, 2007 Share Posted February 21, 2007 :welcome: TARA, I'M SORRY THAT YOU'RE HAVING A DIFFICULT TIME, BUT THE TRUTH IS THAT HAVING A STROKE IS A DIFFICULT TIME FOR EVERYONE, THE CARETAKERS AND THE STROKE SURVIVOR. I HOPE THINGS WILL GET BETTER FOR YOU. IT HAS FOR US IN CERTAIN WAYS. IT'S A LONG PROCESS OF HARD WORK, LONG DAYS AND NIGHTS, AND PATIENCE. EVERYONE RECOVERS AT A DIFFERENT PACE. EVERYONES DEFICITS ARE DIFFERENT. I KNOW WHAT IT FEELS LIKE TO HAVE YOUR ENTIRE WORLD TURNED UPSIDE DOWN IN THE BLINK OF AN EYE. OUR DAUGHTER HAD HER STROKE 1 YEAR AGO. SHE WAS ONLY 22. IT STILL BREAKS MY HEART, BUT WE MUST GO ON. :hug: HANG IN THERE. MY PRAYERS ARE WITH YOU. :hug: Link to comment Share on other sites More sharing options...
jriva Posted February 21, 2007 Share Posted February 21, 2007 . I don't think it sounds "trite" at all to be worried about money. It is/was a major stress point for most of us on this site and it's a huge factor in your present and future security not to mention all the worrying that you, as a caregiver, have to go through to juggle bills and lack of income. So never, ever apologize again for bringing this issue to the table! If you want to read in detail what my husband---who wasn't my husband at the time of his stroke---and I went through money-wise, etc., in our first years out from his stroke, click here: http://www.associatedcontent.com/article/1...ed_my_life.html It might get worst for you two before it gets better, but you have to have faith that it WILL get better. I'd bet that in three months time a lot of this stuff will start to fall together and you'll be in better shape, less stressed over it. Feeling like you are the only one worried about all this stuff, I believe, is also very common. Jack may not be able to grasp all the legal/money/insurance issues going on right now. I know my husband couldn't for several years after his stroke. Now, almost seven years out, if any of these things that happened right after his stroke come up he can understand and shows me the sympathy/support he wasn't capable of showing back then. I liken it to being shell-shocked after a stroke for the survivor. They've had their feet knocked out from under them and it takes time to regroup and think beyond what they've been through to see what others around them have suffered too, but in a different way. Good luck and come back to vent anytime. It really helps. Jean Link to comment Share on other sites More sharing options...
dstraugh Posted February 21, 2007 Share Posted February 21, 2007 Tara, Welcome to the site. My thoughts and wishes go out to you, Jack, and your children. I hope that things start falling into place for all of you. The love that you have for Jack as well as determination will prevail. What is Jack able to do? Can he transfer himself and care for himself? I empathize with what you're experiencing regarding insurance vs. therapy. Mine too maxed out....(insurance)I do what I can on my own. My daughter (who's 14) says she'll help me; however, I have a tough enough time getting chores done with all her school commitments. Jack may not be able to express his appreciation for all you do - but I'm sure he does appreciate you greatly. Link to comment Share on other sites More sharing options...
kristina38 Posted February 21, 2007 Share Posted February 21, 2007 Hi Tara, welcome to the board and sorry you are having so many problems. I am also a bartender so I know how stressful the job is by itself without all the extra stress on top. Don't have much time to post write now but I'll get back to you when I get off tonight. Try to stay positive, I now it's hard, I took care of my Mom for two years after her stroke so been there done that... Kristina Link to comment Share on other sites More sharing options...
bstockman Posted February 21, 2007 Share Posted February 21, 2007 Hi Tara and Welcome. Was your fiance ever in the military? If so VA benefits may be avaliable to help with medication, therapy and home help. If so call your local VFW office. They will even help with transportation to Dr and other visits. You may want to see a Dr about an anti depressant for yourself. You have so much going on right now trying to work 2 jobs and do everything else. Would it be possible to get his family together.. kids and siblings and lay it all out on the line... maybe if the understand what you and Jack are going through and understand the situation someone could stay with him a few days a week or on weekends. Wishing you all the very best Link to comment Share on other sites More sharing options...
al belfield Posted February 21, 2007 Share Posted February 21, 2007 Tara, Hold on baby girl it's gonna be a bumpy ride!!!! My wife had a stroke after surgery a little over a year ago at 43 years old,She to has aphasia and limited use of right side,This is a very exhausting process for us both,I feel like i am always on duty ,always on edge and very damn tired,when the SC comes thru it will help some ,I was told after 2 years we could get medicare for her which will also help.But the truth is nothing will ever be the same again,not mentally,physically or any other way.I am very proud of you for hanging in there and fighting as hard as you are doing,Not everyone will.I know he would say the same thing.Yes in ways things get easier ,but in my case no where near the way it used to be.If you love the guy keep plucking along and pray for miracles,and maybe just maybe one will come true. you know what I miss the most is having a conversation with a adult when i get home,oh yeah we talk but its a game of charades and I never try to show how much it hurts on my end,I just do it!! Tara if you want to talk sometime I know how you feel ,and hell it would be nice to communicate with someone else in my shoes,even if it is thru this machine!!haha Hang in there girl, Al Link to comment Share on other sites More sharing options...
kanderson Posted February 22, 2007 Share Posted February 22, 2007 hi tara, you sure have alot on your plate. i am sorry you are having to deal with all of this. the stroke demon is vicious at times, but it does get better. this is a long and bumpy road. but i know more peaceful days are on the horizon for you and jack. i'm sure jack wishes he could do more to help out and he is thankful you are there for him. god bless you for who you are and what you do for jack. kimmie Link to comment Share on other sites More sharing options...
Dickons Posted February 22, 2007 Share Posted February 22, 2007 Hi Tara, I'm a survivor so I can assure you that your fiancee is so grateful to have you there. Things will get better but it will not be the same. I agree with Bonnie to try a family pow wow siblings and children. Lay it out for them by creating a journal which only really needs your daily schedule showing everything you do. ASK them to HELP! Perhaps they feel that you have cut them out of your lives and are unsure what to do. Perhaps they are just not willing but if you do not ASK then you will not know if they will come through for you and your fiancee. Keep your head high and know it will get better. Kind regards, Dickons Link to comment Share on other sites More sharing options...
slmstrokeangel Posted February 22, 2007 Share Posted February 22, 2007 It does get better . I'm living proof that the power of loving family does count. My husband never stuck me in a home. Link to comment Share on other sites More sharing options...
tara1 Posted February 22, 2007 Author Share Posted February 22, 2007 Dear Jean, I have just finished reading your story "How my husband's stroke changed my life" and I am sitting here in tears. Both because your story is a tragic one and a truly wonderful one. I can't imagine ever being as "at peace" as you are. I certainly hope that day will come. You are truly a remarkable woman. I guess most of us caregivers don't give ourselves enough credit. I'm sure I am not the only one who has thought that this was a role I could never handle. It's amazing what we can do when we have to. I am starting to accept my new life, although, I still haven't reached the point where I stop hoping for a miracle. And sometimes when I wake up in the middle of the night and see Jack laying next to me I forget for just a split second. Those are the best and the worst times. Your story has given me much inspiration. Thank you, Tara Link to comment Share on other sites More sharing options...
jriva Posted February 22, 2007 Share Posted February 22, 2007 I guess most of us caregivers don't give ourselves enough credit. I'm sure I am not the only one who has thought that this was a role I could never handle. It's amazing what we can do when we have to. Tara, Someday you'll be looking back, like I did in the article, and you'll know beyond a doubt that your words up above are true. I'm glad the article gave you some hope and inspiration. Have you ever read my mantra in my signature? Caregiving is not for Sissies. I'll bet I said that to myself a dozen times a day in the first year out from Don's stroke. I truly I think we all need a personal mantra to use to shore ourselves up when we are feeling over whelmed. You'll find one in time that works for you. Until then, feel free to borrow mine when you need the self-talk. Jean Link to comment Share on other sites More sharing options...
Guest hostmel Posted February 23, 2007 Share Posted February 23, 2007 Tara - Hold on tigh - it will get better, but it will probably getworse before it gets better....time will take care of many things..... I am almost a year out - 3/23/06 and the finances are just now starting to even out with disability and insurance finally catching up. Your love is strong and will serve you well in the days to come. I don't know if I can even speak to this area but if he has presence of mind that will be legally recognized, I would recommend that you all do the deed - it will simplify many things - and - with minor children in the house - it may also up his SSDI payments, mostly though it will give you peace of mind and if you call a family gathering as recommended above ( and seconded here) then that will also give you more street cred in laying down the law..... I hope for the best for you - hang tough lady, you'll get there - it will just take time. Link to comment Share on other sites More sharing options...
caringfor5 Posted February 24, 2007 Share Posted February 24, 2007 Hi Tara, my name is Tina and my fiance stroked on Sept. 10, 2005. Our lives have a lot of similarities and if you ever want to PM me please do so. You can read my posts as well, I have been through a lot of what you're going through and I'm still up to my eyeballs in it all, still waiting to get to that better place too. I have faith that its going to get better, that faith comes from people here, if I didn't know them I wouldn't think it was possible anymore. But hang in there, we have proof here that it can get better and that's what I hold on to. Like I said above, feel free to send a message, reading your posts was almost like reading my own. Tina Link to comment Share on other sites More sharing options...
jwatrous Posted February 24, 2007 Share Posted February 24, 2007 :Clap-Hands: Good luck being with the dad of your kids June Link to comment Share on other sites More sharing options...
Deenie Posted February 25, 2007 Share Posted February 25, 2007 My motto has been [when the tough gets tough, the tough get going] I know that at times things can get very rough and it's like having a child at times.. I would like to write a book about the different problems we encountered along the way.. I think it would help others to cope as I was not versed on the whole stroke issue and did not get any therapy as how to cope..I think that it would be wise to persue the va assistance and also to try and find out how to unblock the arteries if possible and if it is safe to do so. it will allow more blood to get to the brain. .I cried many a tear and still do to this day.. It is very hard to live with someone who cannot communicate properly and may say one thing and mean the opposite so you have to decode what the real meaning is.. I constantly have to check on things he has done and make sure they will not create a problem by being left in that state...example lites on the vehicle, water left running,and on and on.. must run bed time .. lots of luck deenie Link to comment Share on other sites More sharing options...
Al2006 Posted February 25, 2007 Share Posted February 25, 2007 Hello Tara, Thank God that Jack and your children have a woman like you. Now days you are few and far between. I'm also lucky to have a woman in your class. My wife took on everything while I could not get around. My strokes were caused by a type of Aneurism called an Ectasia. My left Carotid Artery was affected. There was no attempt to "fix" it. I have a great Vasular surgeon that replaced it with a vein from my leg. This is a risky surgery, but it was my only chance. Have Jack's Doctors considered this? Maybe you need to find a good Vasular doctor. Also, honesty IS the best policy. Sit down with those involved and air your concerns. Believe me, my wife is very good at this. People might get offended or not like what you say, but they will come around if they really care. I would check to see what kind of services your community offers. A simple offer to take him to an appointment could save a day for you. Are you members of a Church? They might help with a ride. His children might step it up and help if they truely understand things. Maybe they can't drive 3 hrs every week to help, but they could help with phone calls for him. Maybe they would help more if they felt more involved. Maybe they would drive in to take him to an appointment, have you ask them? They need to know that they have some input into what happens. That power of attorney has stepped on their pride. You need to realize this, and make the update calls. You and I know that they might not be mature enough at their ages to be given total control, but they dont. Get them and Jack to realize that you and your children could use a day off. His kids could come in for a day and let you go out to the Mall for a break. You can't forget about yourself and your kids. Stress can do a lot damage to relationships, your's and Jack's, and your's and your childrens. Keep your head up, help will come if you let it. You just have to find it and not be to proud to ask for it. Al Al2006 Link to comment Share on other sites More sharing options...
jwatrous Posted February 25, 2007 Share Posted February 25, 2007 First, a stroke is an awful thing, I know because mine was in 1985 at age 39 :Tantrum: leaving a once very active left-handed person, paralyzed on that side, go figure? & a stroke will rob you of many abilities - As your husband suffers from a disease, please be sure you have made a wise choice, leaving him- June Link to comment Share on other sites More sharing options...
HostAsha Posted May 10, 2007 Share Posted May 10, 2007 Hi Tara: welcome to the best stroke support site on the internet, what you are going through is quite immense, I stroked at 34 and for first few months when I was stil at inpatient and outpatient rehab, I was still busy in selfpity and quite self centered, though after coming home I realized what my hubby was going through trying to tie all loose-ends , getting SSDI, and taking me to all therapys, slowly & steadily I started doing lot more for myself, and helping out in house anything which I could do with 1 hand, just doing those small chores at home increased my selfesteem which was down in drains after my stroke. I believe surviving and caregiving both are not for sisses. BTW for me blogging on these site helped immensely.I felt less alone in my journey. Asha Link to comment Share on other sites More sharing options...
myhome Posted May 10, 2007 Share Posted May 10, 2007 Tara, You and my wife must be cut from the same cloth, because she stood by me when I had my stroke. While I lay in a hospital bed she and our combined families cleaned, fixed, packed up, sold the house,moved us into an apartment, and then brought me home. She did this all while working full time, and coming to the hospital everynight to see me. And all through the whole thing we lived on her wage. Then there was the money problems as well, but six months later things fell into place, and we are now in good shape financially. We have all been there- done that. Don't you give up, we're here for you. Stu Link to comment Share on other sites More sharing options...
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