Is it better to bring him home or force him to stay in rehab?
Hello, I know you all get many questions every day, but I have no where else to turn and I desperately need advice. My father (77) had a stroke, a piece of plaque had moved and lodged lower in his brain stem. He, at the time of the stroke was walking 3 miles a day with high blood pressure being controlled with medications. He laid in the floor for 24 hours after the stroke until he was found. He was treated for 9 days ICU in a certified stroke center. His BP climbed post stroke to 190/200 and his heart rate was at its lowest 24. The Doctors could not find out why. He was moved to a skilled rehab on Oct. 30 and here is where my questions start. He is severely depressed, in horrific pain and making small progress. He after 6 weeks cannot move his hand or arm (left) nor can he move his leg but can wiggle his toes. The have to discharge him because he is not improving and he wants to go home. The hospital wants him to go to another center, but I know that it would kill him.
He is desperate to get home and we are training with the rehab to care for him and take him to therapy 3 times a week. The rehab does not support this decision and said that we are hurting his progress by bringing him home. Is this true? He feels that if he gets home he can get better and I think that if he is put in another center he will die. It is me and my older sister who are there the most and will be caring for him most. Can it be done? Does it sound like he will recover at all? Please, any response will be cherished. Thank You, Teresa
Dear DadandMe: It sounds as if you are under pressure to make a serious decision about continuing rehab at home instead of in the rehab center. I'm sorry you must struggle with this question, for which there is no simple answer.
Here are some of the pros and cons to consider: First, as he is now very dependent and will need a lot of both physical and emotional care, you and your siblings must be prepared for the heavy job of 24/7 care, which takes a physical toll as well as being stressful for both of you. It is certainly possible to do it, but it is not going to be easy for anyone. The skills involved in doing a good job and keeping him safe go further than what the rehab center may be able to teach you. However, visiting nurses can continue the lessons for a short time after he is home, and Medicare may cover the needed teaching by skilled nurses for a limited time, if the doctor orders this. Ask. Your dad's emotional health is a very big part of his healing. If your family, in your best judgement, wants to take dad home to give him the love and attention that no facility can match, it may be worth a try. However, you need to consider that his needs can overwhelm all of you, despite your best intentions, and you have to consider what to do if he can't make it at home. Another very important factor is that his Medicare coverage takes care of rehab in the rehab center after hospitalization, as long as he has "rehab potential", as it's called. Once a facility determines that he's not improving or not improving enough, Medicare will no longer cover his stay in a facility. The financial aspects of this are a part of the decision-making. If you bring him home, and he's there for a time and then needs to go to a facility from home, coverage for rehab can be lost. If you feel very sure that dad isn't going to make it in a facility, that he's not going to get much better in such a facility, and that you want to take care of him at home, you have every legal right to bring him home. Neither you, nor your dad can tell if he is going to get better at home or not. No one can accurately tell you, 100% of the time, someone's progress will or will not be hurt by going home, as the love and attention of family have a great deal to do with how well someone progresses after a stroke.
Finally, I think it is very important to honor the wishes of the elder concerned here. It's his life. If he wants to go home, and isn't getting better where he is, he may be much happier in his own home. People usually are. I urge you to discuss this with all family concerned, and with dad, as well as the doctor who is treating him. No one can force your dad to go to a facility unless there is no one at home to attend safely to his needs. I wish you courage in your decision making. I think if everyone can focus on what makes dad happiest, that may be the best guide you can find.
Maybe start with a goal for your father to be able to start to walk or have more movement in his leg before he can move back home. Stress is huge for care givers, its twice as worse then what you think it will be. Your dad will be angry with himself and may get more and more demanding. If the goal is he has to accept and demand of himself three months of therapy at a facility (the right facility watch the staff and get his schedual and make sure he is getting the amount of therapy he should be. you will be visiting. Either way you and your siblings will have to create a schedual to include him. It takes a toll on your life either way but the patients with the biggest improvement are the ones that routinly have family members active in there lives. You will need to accept that he will never do as much as he used to and get counciling. My dad had a serious accident that lead to brain loss with stroke like conditions. He is different gets angry easily, confused and doesn't always make sense of his world. He had an extended stay for therapy only after my sister petitioned she didn't feel qualified to take care of him (she lived with him for the time prior to that)they were going to release him to us without him walking etc. The extended stay 3 weeks made an enormus difference. we brought him in regular food and he had a goal. He refused to eat at one point. but after he could stand and walk with a cane or walker he came home and did additional therapy thru a service. oh he hemed and hawed at money and it was a waste but it is crucial. I am just saying that he will get thru it if he goes to a facility first. If you take him home first it will be worse mentally then if you had required him in to go in the first place. care giver burnout doesn't happen in the first couple months.. it happens when he still isn't better in a year and you realize all the opportunities in your life that have been missed because of dad. not everything can be put on hold.
As a Physical Therapist Assistant who has worked with many elderly stroke patients, I can tell you that brain stem strokes can be the most difficult to rehab. This is the reality. Also, from what you have written, your dad seems to be in a very crucial phase right now. As you said he is very depressed, and so his judgement is not clear on what really would benefit him the most. He still has not accepted that his life will not be the same anymore, and he is probably desperately trying to make things like they were before. He does not realize that in a center with therapists working with him every day he will have a much better chance at recovering at least some function. Of course as someone has stated already, it will be important for you and your sister to be there every day if you can. This will reassure him that you have not abandoned him and that you still love him, and yes, he will get more attention and better care from the staff if you are there. Another thing to consider is that if you and your sister can be there for him during the day but can go home at night, this will keep you both stronger emotionally in order for you to keep being positive for him. He needs continual positive feedback from you both. Any little sign of progress you see, even a little toe wiggle as you mentioned-praise it to high heaven as if he had just run a marathon! And yes, set goals for him, realistic goals that you and the therapists have agreed that he can reach, so that you and the therapy staff are a team cheering him on. Of course, the decision is yours, but if you decide to have him go to a rehab center, do not feel guilty for doing what is best for your dad--he can still get all your love and attention while getting daily therapy, and he will have nurses there around the clock in case of an emergency. Wishing you and your dad all the best- Debbie Jarnagin-Stearns, LPTA
i think patients get better faster at home with family and familar surrounding.rehabs and nursing homes sometime adds to more confusion and depression.
Debbie Jarnagin! Thumbs up girl! Your answer rocks and is right on time.
Thank you all for your answers. We did bring Dad home on Dec. 8th. It has been a little over a month and we have done well. After Dad got home he regained movement in his leg, he can kick it out bring it back and stand assisted for about 3 minutes. He shoulder, hip and knee have sever sublaxation that makes rehab hard. We are getting braces and seeing more Dr.s to treat this. His had has gained movement, he can move it 4" either way and can move some fingers. He still can't tell which fingers are moving, just that they are. He likes to sit in front of the big window that looks over the farm. He looks for deer and other animals every morning while we make breakfast. Showers are hard and despite a good apitite he is loosing weight. His wife of 8 years has almost dropped out of his life and we are dealing with that emotional challenge right now. The therpist say is doing fantastic! We are happy but are aware that this may be all we get, but his is happy at home and that is the most important thing. Thank you all for everything. Teresa
I think that if you know your dad will not do good, then go with that. We did and yes, it was hard and did take a toll on us (we have 3 sisters in town and my mom). I have to add that we did keep him in rehab for a bit but we stayed with him 24/7. someone was always with him pretty much, if we didn't then yes, he would have died, not only mindset but I can guarantee alot of the facilities if not all can't keep up with their patients. Even if they do have enough people working, they are always not of good quality and most are not very professional. I can tell you this because we went through several. All were opposed to us being there, but we behaved went by rules, but fought to be with him day and night, we ended up most of the time caring for his needs because they just couldn't get to him...too many patients and nights were awful, at night some place had the caregivers playing around, sleeping or worse nowhere in sight to answer people's calls for help. That's the hard reality, so if you can bring him home and work out a schedule and get alot of help, even someone to just come and sit with him, when you can't or if you can commit to being with him all the time at the facility and sacrifice that for him then by all means do it. My father is testament to us sacrificing so he could get to where he is today...he couldn't move at all! not even talk after his stroke! also had a feeding tube he went home with. Seek out all resources, there are many out there. Good luck to you...by the way my dad is in a wheelchair mostly but can fully function except for walking, he walks with a hemiwalker sometimes mostly for exercise as long as someone is watching him and he has had medicare okay months on and off of home therapy as well as outside therapy. Hope this helps you! and God bless you for caring for you dad! Yes, it's so much easier for so many people to just place them away in a home...
If you know he'll get worse at a different facility, he feels he'll get batter at home and you can care for him at home, bring him home.
Detailed answer: My 70 year old father had a stroke February 9th, was transferred from the hospital to the rehab place March 26th and hated being in the rehab facility - even though it was for only 20 days and the facility was the best in the county. Though he was physically improving, the rehab facility environment was not helping. We knew if he remained there, he would go crazy with frustration of their rules and lack of things to do. We brought him home April 14th using a wheel chair, though the facility thought he'd get better if he stayed longer under their care. I am able to care for him whenever he needs or wants. The Visiting Nurse Service came to work with him on occupational and physical therapy each 2 - 3 times per week compliments of Medicare. After about a week of being home, he progressed to using a Rollator. After the Visiting Nurse Service time of therapy had concluded (approximately 7 weeks I think), he was walking with no assistive devices. He is now going to acute physical therapy 3 times a week and is continuing to make progress. Being at home gave him the freedom to try to do things for himself, intelligently evaluate his own progress and abilities, and not get scolded by the rehab staff who were always overly cautious of his possibly falling. He is in his own space, which psychologically makes a huge difference and gives him the independence, comfort and motivation to keep on progressing to be stronger. The physiological element of being home and your ability to care for him may make all the difference in your father's improvement. Best of luck, strength and patience to you all.
I have had a brain stem stroke. I am not as old as your dad, and it did not do as much damage as your father has. I can tell you that the urge to go home is great, because you feel every thing will get better there. I know that I hated the lose of being able to use my own bathroom, to sleep in my bed were great. If you feel that you will feel guilty by bringing him home, then leave him there. It is really the best place, for a lot of reasons, but there is the real factor he is goiing to die sometime down the road. If you can give him what he needs or at least what he thinks he needs then bring him home. Remember it is the quality of life not quanity of life that matters. I wish you the best. I always thought I should have done more for my mom, but in reality I did what she wanted even though it was hard to do it, so do what your dad wants if you can.
Being at a home with family is better than being stuck in a nursing or rehab anytime. MIL had a stroke on Mother's Day night at age 76 1/2. She spent 6 weeks in a community Hospital in N.Y. after they tied off 2 aneurysms in area interferes w/shortterm memory. During the 6 weeks they never got her to get to any therapy/rehab because she screamed at them for touching her. Her son was there the whole 6 weeks every day 12 hrs a day. They wanted to remove her gall bladder. Bob said lets get her to Colorado where we live. I had a doctor out here write orders to the doctors there to fly her here and we put her in a transitionary floor where we got her up and walking within 3 days, using the toilet, and eating on her own. Had her evaluated for depression, used their facility to get things set right for her, then went to a rehab facility to help her improve in walking, talking, dressing, etc. After about 7 weeks there she came home with us for a weekend to see how we and she could do. Then she came home permanently, and has been with us for 13 years. By the way, she is also double incontinent. We have to keep her on a schedule to stay dry and clean. To get 500-600 feet of exercise I make her walk up and down the hall 10 times to keep her mobility in good shape. She would rather sit and not bother but that's not good for a lot of reasons. We usually go shopping at least once a week, combining appointments with those days. Walking with a shopping cart is always good exercise too. She has good appetite, always asks after bathroom if she should put her teeth in, even though it's only an hour after the last meal. She watches TV, flips pages in magazines, folds towels and small stuff, sorts things I give her to sort for me. And basically has a comfortable life. Like anyone she hates to take a shower, but still does it if I say we have to do it. She lives in the now time. Does not recall what she did a few minutes ago. We ask neighbors to help us if we have to go out together for some reason. They have been very helpful here as we live in a rural area and understand how it is. We are at 9000 ft elevation, she is also on oxygen. We give her furosimide, potassium, Bupropion, coumadin, oxybutynin, and various supp vitamins, herbs, etc. Those help to keep her healthy and functioning at the best. They thought she was also CHF 13 years ago. But with all I have her using she hardly has any swelling at all. And her BP has always been good/bones strong/lungs clear and she still knows who is who on the tv. Back in '97, One time when she was in the rehab place she fell out of bed to get to the bathroom. The room mate had to call for help for her to get her off of the floor. The roommate said it took them a while to get to her. Thank goodness she had a roommate. I do not think she would have still been living these many years if we had used a nursing home.
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