Dealing with a patient longterm after a stroke
Its going on a year since my dad had his stroke, March 3 of last year. Without a doubt it has been the most stressful and trying year of my life. I cherrish everyday that I have been able to have with my dad, but it has not been an easy ride. There have been times when it was just so hard that you feel like running off to hide from the world, or sitting down in the middle of the floor and quitting.
My dad had a particularly large stroke on the left hemisphere of his brain due to a condition causes atrial fibrilation which we did not know he dad. He had a heart catheterization test done on the 2nd and came home that night, got sick at his stomach and became weak. We did not realize at the time that he was having a TIA, but God not a day goes by that I wish I had not used my good judgement and demanded that he go back to the hospital. He didn't want to go back, and my mother is a scatter brain so what can you do? I kick myself in the pants everyday for allowing them to overrule me.
Anyway within a few minutes he started to feel better, and we let him go to bed. I found him the next morning in the floor in his bedroom.
The stroke he suffered was large, and left him with hemiparesis of the right side of his body, and with pretty serious aphasia and Apraxia, and some visual field cuts.
He has made pretty good recovery, his aphasia has approved to the point where it is possible for him to communicate with small words, but he has lost the ability to recognise written word and still has some apraxia though that has approved. His visual field cut has improved but not totally, and he has some use of his right leg, mainly in hip and kneee flexion, nut much in the way of ankle movement. He still requires alot of help with ADL, and still has his days where he has tendencies to want to just hang his head and sleep but overall things are still coming back slowly. Too slowly for our liking at times, but what can you do?
The biggest advice I would have to someone who is dealing with this is to have patience. This is not an easy task, there will be days when you want to pull your hair out, pull out the hair of the stroke victim and pull any and everyones hair out that is around you, but patience is a must. Remember you are dealing with someone who has brain damage, there is no sure fire way that someone like this will behave or cooperate. There will be days when everything goes as planned and days when not a damn thing works right. There will be days when it seems that the survivor seems to hate your guts, and days that you truly have a meeting of the minds.
Also do not have overly lofty expectations. If the stroke is serious enough and signifigant brain damage occurs, chances are that your loved one will never be totally the same again. Strive for as much recovery as you can get, but be happy with small victories and dont get discourages with setbacks. You cant hold that against them, they can't help it. If they have a bad day and don't want to do their therapy or will not cooperate, don't get angry or try to motivate them by being tough, it just wont work. Stroke patients have good days and bad days for no apparent reason, and adding additional stress on them only makes the day that much worse for you and for them. In situations like this its best just to back off. If they want to sit hanging their head all day, just let them. I don't care if your occupational therapist says that you need to keep on them to stretch their neck muscles, or not hang their head. Remember your occupational therapist does not live with that person everyday, they don't ever get a full picture. Is it really worth the added stress of trying to force your loved one into doing something they clearly don't want to do? There is also the risk that added aggravation and stress will throw a stroke patient into a seizure.
Its also very important what facilities and therapists that work with your loved one after a stroke. Use your eyes, does the facility seem to have a well structured environment, is it staffed appropriately, or do they seem to be overworked with too many patients? Can the staff answer your questions effectively, can they outline for you a cohesive plan for recovery or does it seem like no one really knows what the hell is going on half the time? Is the staff courteous, do they generally seem interested in your loved one as a patient, or do they mearly treat them as another piece of meat that walks through the doors. Is your loved one being treated properly according to their needs, do they work within safe parameters or are they pushing your loved ones too hard or not hard enough? Above all else don't be afraid to speak up and ask questions, if you want to know why they are doing something, or why they are not doing something ASK!! The more you are involved in the process the better your care will be in any facility. This holds true for the worst and the best, both of which I have experienced.
Its also very important to treat your loved one with the same respect that you afforded them befor their stroke, do not baby them or do too much for them (which is hard to do sometimes) and do not expect too much or you are setting yourself up for disappointment.
I hope that this in someway can help someone who has to go through this process, because it can be overwhelming and a nightmare trying to deal with it alone. Godbless and hang in there.