caringfor5 Posted January 25, 2006 Share Posted January 25, 2006 Hi to Everyone, I don't even know where to begin with all the questions I have. Mike just got admitted to RIC and he already has a discharge date of February 11th. I must admitt I was very, very shocked. I guess he didn't make enough progress during his first week, but the care manager said that this is typical for RIC that patients are only there for about 4 weeks. Mike is total assist. He doesn't sit up on his own. He doesn't help with transfer. Doesn't feed himself. He doesn't do any of the things I was hoping he might be able to do when he came home and I'm scared out of my mind. I thought they might work on at least getting him to sit up, they haven't even started that, although she did say that the OT would be working on that next week. I guess I thought that this was a blessing that he was finally in such a world renowned place but basically at this point they have only gotten two things accomplished that I was hoping for, and I know, I know I should be thankful for that and I am. Those are that he doesn't have a feeding tube anymore because he can eat and take his medicine by mouth but he doesn't feed himself at all and he got the catheter out but they haven't even tried to put him on a toilet. Is this normal? I mean is it normal to be sent packing this quick. I mean it doesn't seem like they even gave him a chance. I know he's not been very cooperative because all he wants to do is come home, but I at least thought they would give it a shot for a while. I'm thankful that he can talk and he can follow commands but I guess I always thought that once he started doing that, that his body would follow. Plus he can move everything, why are they not trying to do more. Why is it that there are people in places like RIC that have been there for months but they aren't even as far along as Mike is now. I mean now that I'm off the phone with her all these questions are popping into my head. It just doesn't make any since to me. Where do we go from here. He has spasticity in both of his arms. What about care for that. Don't get me wrong, I'm thankful that he's coming home I guess its just sooner than I expected and with none of the goals that I thought might be accomplished. Thanks for listening to me, Tina Link to comment Share on other sites More sharing options...
jwatrous Posted January 25, 2006 Share Posted January 25, 2006 sounds like you both have been thru alot, but from my experience, they don't discharge until the pt. can do much more than you mentioned - I would talk with his doctor and his discharge team - they must help you out, here Link to comment Share on other sites More sharing options...
jriva Posted January 25, 2006 Share Posted January 25, 2006 Tina, I was told by a nurse who used to work at one of the best known rehab hospitals in the country---where my husband was for a short time---that they always get rid of the patients who they don't deem can make a fast and almost full recovery. That's how they keep their high rate success that keeps their grant money coming in. From their point of view, the fact that your husband isn't very co-operative is probably enough in itself to cut him from the program. I know this is a royal disappointment to you but don't give up! Fight to get him into a program somewhere else if at all possible. At the very least, get some in-home therapies. My husband went from a huge rehab to sub-acute to a small hospital with a rehab program. The small hospital had the most heart. Jean Link to comment Share on other sites More sharing options...
door60 Posted January 25, 2006 Share Posted January 25, 2006 My mother was in an accute rehab immediately post stroke. She was there for the allotted 20 days, and simply didn't make any progressl there, becuase she just wanted to SLEEP. I think a lot of doctors, and hospitals just think starting therapy right away is right for all stroke patients, but it wasn't right for my mother, and she could not do anything upon dismisal -- not even transfer or sit up. I then had to admit her into a nursing home where they gave her therapy (I even got her Insurance company to pay for it after alot of fighting). In 6 weeks there, she made wonderful progress. She started to transfer by herself, and started walking with a hemi walker. Then I got her into another sub-accute place where she learned to stand without holding onto anything. So, my point is that you need to get your loved one more therapy. I have been working very diligently with lobbyists, and lawmakers to try to make this law. It just seems that Stroke Recovery is absolutely possible, just slow. Stroke patients needs lots of therapy, not just 3 weeks, or 3 months. That's my take. You just need to make lots of noise, and hopefully you'll get more therapy for your husband. Good luck! Dorrie Link to comment Share on other sites More sharing options...
caringfor5 Posted January 26, 2006 Author Share Posted January 26, 2006 Thank everyone for your replies. This is the thing. Mike begs, and I mean begs to come home. They are talking like he needs to come home or go to a Skilled Nursing Facility. I don't know if he will be able to be admitted to one close to home and I think we will have the same problem of uncooperativeness even if it is close to home. He's currently four and a half hours away from me. They are recommending in home therapy or outpatient therapy. I don't know if I will be able to get him back and forth for outpatient. Do you think I'm wrong to try to bring him home and work on therapies from there? Should I admit him to a SNF? There is a brain injury waiver program in Illinois that I will be applying for that will enable me to continue to work and my sister is moving in with me to enable me to run errands and things like that but she will still have to work as well. I'm hoping that his mom will also come to the house for at least an hour or two a day because the brain waiver program only alots for a maximum of 40 hours a week and that won't cover my drive time. Still the main question I'm wondering now, after staying awake and thinking about this, is it a bad idea to bring him home? Keeping in mind that he constantly talks about coming home. Also, he was already in a long term care facility to be weaned of a ventilator and the rehab didn't seem to be working out there either, but he was four and a half hours away there too. It seems like we can never get him in a place close to home because he is on Illinois public aid for medical. Also we are going on 5 months post stroke so I don't know if they feel like this is it for him or what. Any advice would be so appreciated. Tina Link to comment Share on other sites More sharing options...
tom71 Posted January 26, 2006 Share Posted January 26, 2006 Tina, The main thing for you to remember is that there is no right or wrong answers here, I say isten to your heart, if you think you can do his home therapy's with him that may be the best thing, if not go the snf route, as far as your question about being 5 months post stroke, they are taught that a person will regain most of what they are going to in the first 6 months, but as all of us srvivors know that is bull crap!, I am 3 years post stroke now and I am still making good gains, I really hope the best for you and Mike, God Bless you both, Tom Link to comment Share on other sites More sharing options...
kristina38 Posted January 26, 2006 Share Posted January 26, 2006 GRRR Tina, I just wrote a very long detailed post which my keyboard ate lol...Here's the abbreviated version...My Mom stroked just shy of a year ago and was given very little hope for recovery. She was in ICu for 31 days, step down for 6 weeks, acute care rehab for 5 weeks, and rehab for five more weeks after that. She was very uncooperative with therapy and like your husband they gave her the boot quickly. When she came home she was incontinent (with acute diarhea), paralyzed on her right side and max assist on everything. We did get Home Health care including PT, OT, Speech, Health Aide and Nurse. Mom's house was like a zoo and I almost lost my mind those first two months. Some days she would have to be cleaned up and given new bedding 10-12 times. I would also have to redress her decubitus wound on her bottom every time as well. I couldn't believe they would just send her home like that but they did. It's all about the bottom line for them. Personally I feel Mom has recovered so well because she is here with ME. I was told her wounds had little chance of healing and we should probably amputate her foot because of the wounds on her heal which was so bad her achilles tendon was exposed. Well, ALL her wounds are healed now, she feeds herself helps to shower and bathe herself etc. She was just TOO sick to participate in therapy at the time they wanted her too, she has recently begun therapy again at home and is doing GREAT! Her right leg is getting more mobile every day and a couple of weeks ago she started getting some movement back in her right arm. This is almost a year post stroke and she is just now beginning to make gains with her speech and mobility issues. Her body needed time to heal before the brain could start to heal. Today she walked the entire length of our futon four times with minimum assist! Your husband will know when he's ready to do more. That six month plateau stuff is assanine, Mom didn't even begin to get her right leg back til after that so don't lose hope and good luck! Kristina Link to comment Share on other sites More sharing options...
Keepongoing Posted January 27, 2006 Share Posted January 27, 2006 Tina, I found the same thing. My husband was very unhappy and sick after the stroke. I followed my gut and I believe he would have just given up if I had not brought him home. They sent him home unable to transfer, walk, talk, they said he had reached the end of any improvement. That was 2.5 years ago. It was the hardest thing I have every done in my life but, I would do it again. Today he walks with a cane, does all his own personal care, helps by doing laundry and dishes, and is still improving. It's still a decision you have to make, what you can deal with, and what help you can expect from others. My heart goes out to you. Lynn Link to comment Share on other sites More sharing options...
caringfor5 Posted January 27, 2006 Author Share Posted January 27, 2006 Hi everybody, thanks for the added replies. I'm being outnumbered though. I think Mike is going to give up and just wither away if he doesn't come home, but his family (who ultimatley make the decisions because we were not married yet) and the doctors feel that Mike needs a transitional period at a facility before coming home because on top of the stroke he also has a heart condition. I talked with his Mom just a few moments ago and basically I told her that if we continue to worry, worry, worry about what might happen if he were to be at home instead of a facility then we are just basically keeping him alive to have him suffer. He's not able to live a life where he feels he's a part of our's if he's in a home for the rest of it. I admitt I don't have everything in place in the home and I didn't have all the answers to who was going to be with him and when, and I think there is the main problem. I don't think his Mom wants to have to help with any of his care and because I would need her for maybe a couple hours a day during the week I think that is where this he needs a transitional phase is coming from. Don't get me wrong I think she is concerned about his heart condition but I don't think that that is all there is to it. I told his Mom that I agree that it might be a good thing for him to have a little more time in a setting where there is medical care but I DO NOT want him in a facility for the rest of his life. I'm scared that by agreeing to this now it is going to make it even harder to get this accomplished later. I also told her that I don't think that he is going to be any more cooperative if he is in a facility then he is now, but that my feelings were that if he is at home it would give him a renewed spirit to keep going. I don't like not being able to make these decisions on my own and I don't like that I would have to rely on someone to help me. I wish so badly that I didn't have to work, then I wouldn't have all these problems of who would take care of him when I'm not there. I just want to be able to take care of him and I'm not going to give up on bringing him home. thanks for listening, Tina Link to comment Share on other sites More sharing options...
Guest lwisman Posted January 27, 2006 Share Posted January 27, 2006 Tina, I do not have personal experience of being in a home before coming home. But, I know there are people in this network who have used a nursing facility as a step toward moving into their home. I hope some of those folk are able to reply to you. Having him in a location with skilled nursing could be a plus. If you have not dealt with such a facility before be aware that the squeaky wheel gets more attention. My mother was in a home after she had Alzheimer's and was no longer safe in a situation where there was not someone around 24/7. We went at different times, made comments when there were problems, etc. In other words, the situation is best if monitored by family members. I also observed that when family members were involved, the patient got better attention. Placing him in a nursing facility does not mean that he had to be there forever. It maybe just the correct place for him as the next step. See if he can't have therapy while there. This can help his recovery. Explain it to him as the next step, not the final one, in his recovery. This would also give you some time to prepare. You can make any changes necessary to your home, line up help, etc. It might be better for him if you have the time to prep. Link to comment Share on other sites More sharing options...
caringfor5 Posted January 27, 2006 Author Share Posted January 27, 2006 Hi Lin and everyone, I'm starting to come around to this idea as being the next logical step. The doctors at RIC have said that he would need two people with him, which I don't think is neccasarily true, I actualy think that I could lift him and position him in bed and chair by myself. I've seen the PCTs do it all the time while he's been there so I don't know where the two people recommendation came from, but besides that I do think that it will allow me the time to get things in place in the home and I'm hoping that with me there alot more than I can be while he's in Chicago, that maybe he will do a little better. His Mom is wanting to check in to paying for extra therapy out of her own pocket. I think she is going to find that that is very expensive but I plan on trying to attend as many therapies as I can to learn what they do and try to copy that as much as possible and as much as the facility will allow while I'm with him. I know I don't plan on this being the last step and I hope he understands because its breaking my heart to have to send him there but right now I have to admitt I don't have anything in place. I don't have a ramp, my doors are too narrow, the bathroom is a awful set up for someone in a wheelchair. Our house is not set up to accomodate someone who uses a wheel chair to get around and I would like him to be able to move around the house easily. So I do have a lot of work to do. I've thought it might be easier to sell the house I'm in and buy a more accomodating home for him but I don't think financially I could do that right now. The hardest part of all this is that it has taken so much away from him and the second hardest part is all the uncertainties, I just never seem to be able to do what I want to do, it just never works out that way. Maybe its Gods way of guiding me to the right decisions by forcing me in a way. The place I have in mind is a minute from our home, literally, and 20 minutes from his Mom. My Mom works there in the office and my Aunt is a CNA. I also know the Director of Nursing. So of all the places for him to go I would hope that it works out that he can go there. Please everyone pray that I make the right decisions and that things work out for us. I'm willing to accept that its going to take a long time for him to recover what he's going to recover, but I'm not willing to accept that the person I love more than anything isn't going to eventually be able to come home to me. Thanks for all the replies and for listening, everyone has been a great help. Tina Link to comment Share on other sites More sharing options...
MrFritz Posted January 30, 2006 Share Posted January 30, 2006 Hi Tina, I am also in the Chicago area (southwest suburbs) and I have been in your boat. When my partner Sam was released from the rehab hospital, he still had a feeding tube, was recovering from aspiration pneumonia and could hardly sit up by himself. He will continue to improve, however, in my opinion, ( and this is only my opinion), a nursing home is NOT the answer. I used the Brain waiver program. They will do an evaluation and provide you with a certain amount of hours with a CNA/Homemaker daily that will assist your husband. I work full time and in the beginning (after his first stroke) I only received 5 hours per day. After his last stroke, I get 10 hours/day. Please check into this program and set up an appointment. You will see more improvement at home than at a facility. The hospital will be able to provide you with in home nurses, physical and occupation therapists and not having to commute to see him will actually become alot less stressful. Hope this helps. Steve aka Fritzie Link to comment Share on other sites More sharing options...
caringfor5 Posted January 31, 2006 Author Share Posted January 31, 2006 Hi Everybody, Ok, so after touring a facility that was close to my home I actually thought I might have an anxiety attack!!!! I can not imagine him there at all, but yet I don't have time to get anything ready at home. I haven't toured any other facilities yet but I'm suppose to tour a place called Extended Care Services tomorrow. It is a place that is in a small hospital that is affiliated with an Acute Rehab in our area. He would get therapy each day and it is close to home it is only an 18 bed facility and is not a nursing home. I'm hoping that if he goes anywhere it will be there and then I have got to start getting things together. I don't want him to live in a nursing home but I don't know how to make the changes I need either. My bathroom door is unusually narrow, basically the whole bathroom is very small but I want to do something to it so that I can at least shower him instead of bed baths. Its basically your typical 1950's bathroom size. If any one could give me advice on having it redone and if anybody has had a regular bathroom remodeled to accomodate a wheelchair and can tell me what kind of price to expect please let me know. Who should I contact to get an estimate. I don't even know where to get started or how to pay for it. I need a ramp built because we have three stairs that lead up to our front porch and I would like to be able to trade in both of our vehicles and get one minivan because it would be so much easier not to have to rely on public transportation to get him back and forth to doctors appointments. He doesn't transfer on his own so it would be easier to just keep him in the chair rather than lift him out of the chair and try to put him in the car. I also will have to apply for the brain injury waiver program from here and I'm hoping that this other facility will have a social worker that can help me with that. If not I'm going to be going it alone and I don't have a clue when it comes to getting this started. By the way Thanks "Steve aka Fritzie", you were actually the one that I learned about that from even before you posted to this topic. I had read another one of your posts when you had talked about getting your partner on the program. I would not have ever known such a thing was out there if I hadn't read your post on this site. How exactly does it work though? Did you have to hire the person and then the state reimburse you or does the state take care of that and pay them directly. How long were you without help before the program kicked in? Maybe you could PM me and let me know all the details. I need all the help I can get!!! Something else that is causing this to be even more stressful is the fact that I found out a week ago that he would be discharged on the 11th and I was suppose to be going up there to learn to transfer and bathe him, learn his meds. I don't know how I'm going to facilitate finding something if I'm going to be up there. I'm sorry I always sound like a spaz. I don't know how you all have done it but I commend each and everyone of you, survivors and caregivers alike. At the very least at least he will finally be close to me and at the very most I hope to get him into this program and get him home as soon as possible if not now. Thank you all for listening, Tina Link to comment Share on other sites More sharing options...
Campana828 Posted January 31, 2006 Share Posted January 31, 2006 Hi Tina, My husband has a stroke on 10/10/05 he is considered 100% max assist although he can feed himself. When I was told that they had given him a release date from the rehab facility I was was stunned being that he can not even sit up by himself. I felt overwhelmed and completely stressed out about how I was going to be able to care for him. The social worker said it was possible for him to return to the local hospital but the therapy he would receive in acute care would be very minimal. She was able to locate a SNF that was less that a mile from our door step and across the street from our daughters school. At the SNF he was to be getting 1.5 hours of combined therapy three days during the week which was better than the acute care would offer. He had been told that they were transferring him to Fremont which is where we live and assumed that he was going home which was what he had been asking for constantly it was very depressing for him when he realized he was not in front of our house when they took him out of the transfer vehicle. He had been at the SNF only 6 days when I was given a 72 hour notice that our HMO would no longer cover the cost. Once again I was shocked how soon it was determined that he was not progressing. He arrived on a Friday afternoon and did not have his first therapy session until Monday and again on Wednesday Thursday was thanksgiving and the therapist was only with him for 10 minutes on friday. How much progress could they have expected? We have no shower or bath on the first floor of our home and I am not able to lift him nor can he assist with transfers so at a cost of $194 per day he stayed at the SNF. I am not employed outside of the home and although we are getting disability pay it did not cover the expense. He was getting even more depressed and I wasn't too cheerful myself. So we brought him home. The moment he came inside the door I felt calm for the first time in 3 1/2 months. He has been here nine days and I have amazed myself with how well I've adapted to this. A goof friend of ours moved back from Florida and has been staying with us so that has been a big help if it were not for his help I would have thrown my back out by now. I am by myself during the days while he is at work but so far so it's been ok. Sure the laundry is falling behind but that started weeks ago and the girls are in danger of being lost each time they enter their bedroom but I'm hoping that will change :head_hurts: What is important is that were all home. Good luck and when you do bring him home don't worry just tackle the problems as they occur. Jodi Link to comment Share on other sites More sharing options...
HostAsha Posted January 31, 2006 Share Posted January 31, 2006 hi Tina: its outrageous, I was in rehab for 3 weeks, though i was in icu for 4 weeks and my SIL who is therapist started me on therapy right away in ICU, she made sure I don't fall into crack of big hospital, but it was total disappointment for me in rehab where they would not even touch my affected hand, only work on my leg, which was in a way pretty good, but they soon started telling me discharge date, and our family told them they don't have anybody to take care of me at home, so that forced me to keep me longer which is 1 more week then I started in day rehab (out patient) for few months though in my mind they did not work on anything extra, but tell them he does not have anybody to take care of, and maybe make goals for PT and OT Asha Link to comment Share on other sites More sharing options...
jriva Posted January 31, 2006 Share Posted January 31, 2006 Tina, See if your town has an Advocates for the Disabled office. (Some areas have different names for them.) Try calling your 2-1-1 phone system to access community information and referral services. The advocacy offices can often hook you up with organizations who will build ramps at a very low cost and enlarge doorways in your home. Even if your husband goes to a place where he'll get more therapies, you're still likely to need to make changes in your home or location, because they aren't going to keep him until he's 100%. When my husband came home, neither of our two houses were good candidates to remodel for a wheelchair. We ended up renting an apartment to give us time to see how much he'd get back. It was just a way to buy us some time before making decisions about major life style changes and choices. Jean Link to comment Share on other sites More sharing options...
Guest joy Posted February 1, 2006 Share Posted February 1, 2006 Hi, Tina, We had to have a bathroom redone in our old 50's home. We widened the door to the maximum that it could be which is exactly what I needed to get a shower chair through. Then the regular bathtub was cut in half and taken out. The place where it was was tiled in to basically make the whole bathroom a shower. It can still be used as a regular shower with the use of the shower curtain. I bought a regular size shower chair that has rollers on the legs. I can transfer Hans to the shower chair and roll him into the bathroom and shower him and shampoo his hair. It is wonderful. This cost approximately $3,000.00. We also sold two vehicles and bought a handicap equipped van. That was a biggie cost wise but it is well worth it. I had been transferring Hans, who is a big man, into and out of a Blazer. Now I just let the ramp down and he rolls himself into place. It has tie downs to secure the chair to the floor and an extra long seat belt to fasten him in. We bought a Chrysler Town and Country - used, not new - and paid $29,000 for it. It was in good condition and has not given us any trouble. I hope this helps some. Depending on where you are, there may be some programs available from your State to help with the cost of the bathroom redo and the ramp. In Texas there is. If I can be of any further help, please don't hesitate to contact me either by PM or e-mail through my PM button. Good luck, Joy -------------------------- Your post giving out your email address and/or providing your personal contact information has been edited. This was done for privacy and security reasons. Our organization purposely masks this information about members in order to prevent spam and other abuses of personal information. Hope you understand. Please exchange contact information privately through your Personal Messanger. MBA: JR Link to comment Share on other sites More sharing options...
Keepongoing Posted February 1, 2006 Share Posted February 1, 2006 Tina, When Rod came home he could do anything but feed himself. We had a raised ranch. Some of the things I did were: Asked a bunch of his friends and co-worker to build a ramp in the front of the house. It only cost me for the wood. Ask his mother to pitch in for that. Inside stairs -I found a company that rented stair climbers. Didn't want to buy one until we were sure we needed too. Renting is cheap Wheel chair was too heavy to take up and down stairs- Got his brother to buy another one (cheap on Ebay) Took doors off the hinges- all the doors were too small with the doors on, taking them off added a few inches. If you have rugs the wheel chair will not roll well, I got the hard plastic sheet you put under desks for your chair. I had to do the whole house. Just a couple of tips as I think of more I will PM you. You are at a point we have all been at. You'll be fine-accept all the help you can get, ask friends and family to help you get things settled. Good Luck Lynn Link to comment Share on other sites More sharing options...
caringfor5 Posted February 2, 2006 Author Share Posted February 2, 2006 Thanks everyone for the great ideas, I did end up looking at the Extended Care facility, it is very nice and it is a short term place not a nursing home so since its next to impossible to get everything done in the short time they have given us he could go there until I can get a few more things lined out. I feel like I'm trying to accomplish the impossible. I guess not the impossible, but its like every one else thinks its impossible. Not anyone here of course, I mean the people at the rehab he's at now, even his parents don't sound too confident. The only thing that keeps me going is the love I have for him, because if I didn't have that I would give up. It is so hard to get everything together and I have so many things stacked against me but I'm going to keep trying. I am confident I can make this happen but everytime I think I'm making a step forward something happens for instance I went to look at a used wheel chair accesable mini van but the payments on it would have been more than the two payments I have now by alot and It kind of made me scared to go ahead and get it with the way that everyone is so forceful that he should not be coming home. I'm afraid they are going to convince his parents of this and then he will never be coming home because they make the final decisions for him and I would be stuck with a higher payment and no Mike at home to take anywhere in it. So I held off and didn't get it. With me not having the final say on anything, its really scary to make alot of big purchase type changes when I could end up being told he's not coming home. I think one of the main things that I have a big problem with is that he will be coming to my home but I have no final say on when that will happen or if it will happen, but I'm the one to have to look into all the things to make my house better for him, look for doctors, look into programs but when I come up with someone it always has to be ran by his parents. Its driving me up a wall. For instance we were suppose to have in place a primary care physician, neurologist and cardiologist, all of which Mike did not have before his strokes. I found and made appointments with all because if we don't find a place that is acceptable for him to be in while I finish getting things ready then I just would rather bring him home and make the changes as we go along. Well.....his Mom said she wanted to check their credentials. We are dealing with Public Aid here, very few doctors take it and most of the ones that do either aren't taking new patients or they only take it for established patients. I feel like I would be so much better off to be able to make these decisions on my own without having to run through the "supervisory board", but I don't know how to approach it that I should maybe be Mike's POA for medical since I am the one that he will be living with and the one that will be taking him to doctors appts. I just want to bring him home because he wants to be home, why does this have to be so difficult. I'll talk to everyone soon and fill you all in on whats going on. At this point it seems like everythings up in the air. Tina Link to comment Share on other sites More sharing options...
door60 Posted February 2, 2006 Share Posted February 2, 2006 I have read all the posts, and I understand everyone's frustration. I had the same thing with my mother. Just to let you know, Tina, there are usually funds available to build ramps for outside the home -- call your State's Disability Services. As far as being discharged too early, I am in complete agreement with all of you. When I was going thru that ordeal with my mother, I was devastated. They said my mother had plateaued (how I learned to hate that word !!) after only 3 weeks post stroke (in addition to recovering from a massive stroke, my mother was also recovering from hip replacement surgery). I was on the phone constantly, insisting she get more therapy, that 3 weeks was too early to dismiss her. I was thankfully able to persuade her insurance compay to allow for more. So, this is my response to all of you.... PLEASE, PLEASE call your federal representatives about your situation with dismissing your loved one too early from therapy. We've got to change the law on this one!! For those interested, I am in contact with a therapy lobbyist group to get the law changed about mandating more therapy for stroke patients. I know if you're in the middle of a crises, the last person you want to call is your congressman, but if you're a little past the crises stage, please do so. Together, I think we can really change things. Dorrie Link to comment Share on other sites More sharing options...
MrFritz Posted February 12, 2006 Share Posted February 12, 2006 Hi Tina First let me apologize for my not responding earlier. I haven't logged on for a few weeks. The Brain Waiver program is available to disabled individuals with low incomes. You do not have to pay for it, it is paid for by the State. It worked out well for me because I work full time. Sam was moderate assist when he had his first stroke and was able to transfer himself from the couch to his wheelchair and then transfer himself onto the toilet and back. However, there were times I would come home and he would be laying on the floor. The Brain Waiver Program provided me with in home help for a certain amount of hours a day. They do an evaluation and determine the hours needed. In our case, they provided 5 hours daily although I was gone for 10 hours at work daily (between commute and all). ( I know now that had I pushed for more hours I probably would have received them) In addition, they provided us with "meals on wheels:, (Sam wouldn't even eat the food, so I cancelled it, rather have it go to someone who would than us throwing it away). The Brain Waiver program is run through the State of Illinois. If your partner does not have any income presently, he should qualify. I live in Bolingbrook, about 25 miles southwest of Chicago and it is handled by the county in which one lives. It is also important to apply for public aid. I don't know what his insurance situation is, however, public aid will usually pay for all meds, wheelchairs, etc. to bring him home. Check with the hospital administrator about this. If I can be of any help, please let me know. Take care, Steve aka Fritzie Link to comment Share on other sites More sharing options...
PElizabeth Posted February 14, 2006 Share Posted February 14, 2006 Dear Tina-- We hope that some of your issues are being resolved. We are impressed with your love and dedication to Mike. Billy and I were in similar circumstances. His stroke was two weeks before we were to have been married, and we did get a power of attorney for me, although family getting involved was not an issue. Regarding Mike's lack of cooperation in rehab, please know that the strokes can cause a lot of psychological and emotional problems that really can't be helped. When faced with this, we are usually able to say, "it's the stroke." Unfortunately, lack of cooperation can lead to some loss of recovery. Not knowing how much damage a stroke has done, you have to work under the assumption that recovery can take place. If, for example, Mike had a left-brain ischemic stroke, then it takes a long time for the right side of the brain or some undamaged areas of the left side to take over. And as others have said, don't believe what a lot of the medical community says regarding 6-month recovery or about plateaus. A good/positive attitude and sense of humor are the first steps to recovery. As overwhelmed as you are feeling, your attitude seems wonderful. If you are interested in some of the specific steps that we have taken at home, please let us know. When you don't know what to do, do the next thing! Paula & Billy Link to comment Share on other sites More sharing options...
Guest emerald Posted February 14, 2006 Share Posted February 14, 2006 Hi Tina, I had brain surgery and a stroke all in the same week. My tumor was benign and I had physical and occupational therapy in the hospital, but I was'nt progressing fast enough according to the insurance company. The doctor and the occupationost and physical therapist decided I needed 24 hour care and I was placed in a nursing rehab place. While I was in the hospital I begged to go home and cried. I had been in the hospital for 2 months. Instead they (my family) decided it would be best to go to a rehab place. They were wrong. Everytime they came to visit, I cried and begged for them to take me home. The nursing home rehab sucked big time. They would tell you you would have therapy the next day, but you never knew what time or who you were having therapy. Finslly, the nursing home sent in a psyciatrist to see me cause I cried a lot. When he came to see me he asked me if I was depressed and my response to him was "No, I'm not depressed I want to go home. I hsd already been away from my house and dog for 3 or 4 months now. I reiterated again in a very stern voice that I want to go gome now. He did'nt do anything and did not give me pills cause if he would have I would have refused them. My brother took me to the eye doctor cause I had trouble reading out of my glasses. When he brought me back to the nursing home, they told me and my brother I had to leave now cause my insurance woul'nt pay anymore. I left and went and stayed with mr boyfriend. I had in-home therapy which I excelled at. My boyfriend taught me how to walk to the bathroom and up and down stairs. He has a lot of stairs. I stayed with him for about one month and decided to go home. Best move I ever made. I still go to therapy and do therapy in my home twice a day. I take care of my dog, change my bed and make it with one hand, do my laundry and make things for myself. I live alone and although I still need help with some things, I am proud to say that I do 98% of things on my own. I walk with a cain, can shower and dress myself. The nursing home did absolutely nothing except get the insurance money. I love living in my own house with my beautiful dog. She just does'nt understand why I can't take her for a walk, but I'm trying to get where I can take her for a walk in the spring. My heart goes out to you, but I think Mike might be more co-operative if he comes home and he'll have to start doing things on his own. While I stayed at my boyfriens, he did everything for me because he could do it faster, By me being home I do more things for myself. When he comes over he still trie to do things for me and I tell him he's not helping me, he's hurting me, so now he lets me do my thing unless I ask him. Mike mighy just surprize you and start co-operating with the in-home therapy more. Tell him not to give up and to keep doing his therapy. Don't always do things for him, let do it by himsel. It will be a year in March and I still have a long ways to go, but I won't give up because I believe in my heart thT i WILL RECOVER FULLY, BUT IT'S GOING TO TAKE TIME AND PATIENCE AND A LOT OF DETERMINATION. Soirry this is so long, but let him go home. He probably will blossm better at home. lET HIM COME HOME. gOD BLESS YOU EMERALD Link to comment Share on other sites More sharing options...
caringfor5 Posted February 14, 2006 Author Share Posted February 14, 2006 To everyone who has replied, those are my feelings exactly. I have said over and over again to his family and the hospital he is in now that he will do so much better if he could come home. I feel that he is so focused on getting out of the hospital that he can't focus on getting better. I know he has a lot more potential to get better but his heart is not in it right now because all he can think about is getting out of the hospital. We got a day pass today and he got to go out and be in the "real" world for a change and he was so happy. He is just so sad being here. It is so frustrating to have to go through another person to make these decisions. I think the hospital here is starting to see just how not involved his family is but at the same time they want to voice there opinions and make the decisions. What I mean by that is his Mom keeps telling the hospital that she is looking into facilities because she doesn't feel he is ready to go home and that we're not prepared for it, but she doesn't do anything to prepare for it and hasn't toured any facilities either at the same time by being that way she's holding me up from getting the things in place to bring him home. What I mean by that is everytime I tell the hospital that I want to bring him home and talk to them about what has to be done to do that, they jump on the phone with his Mom (who because we weren't married was appointed POA) then she acts unsure of what she wants to do and then I'm back at square one. I think if they would spend any amount of time with their son they would realize how much he doesn't want to be in another facility and how much its breaking his heart that we are still unsure where he is going from here. I just want to bring him home. I will make the needed changes, I will figure out how I can continue to work and have him at home, I will get his doctors in place and get him there. I just need his Mom to quit butting in. The hospital here won't let me make any decisions, but at the same time his Mom isn't making any either. As we stand now, he has a discharge date of the 18th and I'm saying we're taking him home and his Mom is saying we don't know. It's driving me nuts. I feel like no matter how much work it would take to care for him and make the needed changes to my home, nothing can compare to the nightmare Mike and I are living right now. I have talked to the care manager here about the fact that Mike did not appoint his Mom or Dad as his POA, but I don't think they feel he's compitent enough to appoint someone else now so they just keep jumping around the subject. I know that if I was his POA this whole process would be going alot smoother because there wouldn't have ever been any doubt to were he would be going from here. The only time I ever questioned it was when the doctors said that he needed a transitional fase. I have since found out that that is not what the doctors said at all his Mom actually brought it up to them and they said that that may be a good idea for us to get some things in place but they did not tell her that we needed to do that. I hope that the next time that I post I will be posting that he is at home. At this point it is still up in the air but I'm still telling them that I want him home. Talk to you all soon, Thank you all for the good advice. Like I've said before I don't think I could make it through this as well if I didn't have all of you helping me out with all the support. Tina Link to comment Share on other sites More sharing options...
HostAsha Posted February 14, 2006 Share Posted February 14, 2006 hey Tina: don't underestimate amount of caregiving you might need to give, if you say he is not progressing far enough at hospital what makes you think it will be easy to handle him alone where your apartment might not even be handicapped accessible, if he is walking around & stuff then it will be easier for you, otherwise you are in for rough ride. I m telling you as I see it, lot of marriages fall apart after stroke& lots of marriages become very strong. when I came home after stroke I was quite independant meaning I can do all my ADL without any assistance from anyone, but it took me 2 years to get control of my household, not that I wasn't capable, but emotionally I wasn't interested in. I got involve in my daily grind after a year& having blast, though I can surely say caregiving is not easy, on this board itself I have seen guys divorcing& also sticking by. point I m trying to convey to you that you are still very young, make decision with your head, not with your heart, get his mom involved, and ask her concerns. tell mike the amount of therapy&attention he will get when he is at hospital will be quite different than when yo come as out patient where getting him to hospital& out from hospital is asl big challenge they r all eqipped with stuff, and how well you are equipped with. just going home does not solve problem, it amplifies& shows all problems. these r my real concerns cause I also shortned my stay at rehab hospital to only 3 weeks, but later on suffered with transportation issues. to survive v ateast need 1 job Asha Link to comment Share on other sites More sharing options...
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