Aa
Worried Wife
Hi and thanks for reading..a short medical history.
My husband suffered a middle cerebral artery stroke on 11/2/06 at 51yrs old. He suffers with Hypertrophic cardiomyopathy, mild diffuse CAD in LAD and CCX, cath 8-05, Mild Mitral regurgitation, Paroxysmal atrial fib, failed Norpace, cardioversion 3 times in 12 months-all failed. A few days after his last cardioversion he had a massive stroke.His right carotid artery was completely blocked. He has gone into heart failure several times but the Lasix they gave him last time seems to keep it under control. Due to his irregular heartbeat his blood pressure is hard to get most days. But it has been running very very low. It makes him tired and he sleeps a lot. His needs are overwhelming for me most days, but I keep at in hopes he will improve. My wish is he can at least get to the point he can go to the bathroom by himself so I can leave him alone to run errands for an hour or two. My biggest question : is it his heart that is interferring with his stroke recovery? Prior to his stroke he was tired all the time, slept a lot during the day an at least 10 hrs at night. That is why he was so keen on getting his heart in regular beating because when it is not he suffers greatly from fatugue.(sp) Due to his condtion no one wants to address his A-fib and so he just sleeps and sleeps or is disoriented and confused. On some days he goes back into Sinus rythm and I can see the diff in him. He is alert and I can take him out in his wheelchair. I dont know what to think anymore. It has been almost 8 months now since his stroke and he has many more bad days then good days. I dont want to put him in a home, but I dont know how much more I can do. Every day I just keep thinking today will be the day he starts getting better. sigh..The nurse states that with his heart and all he has maybe 10 yrs but could be less. His long term memory is still there. It is heartbreaking. If he really only has a couple of years left, then I feel I need to suck it up and do my job..but 10 years is a long time to do this. It is a full time job plus another one. I feel so selfish..but I am so sad all the time...I have no help to speak of...2 days a week the VA pays for a woman to come in to shower him...thats it...I just wish I knew what to do.
thanks all for reading.
Cheryl
My husband suffered a middle cerebral artery stroke on 11/2/06 at 51yrs old. He suffers with Hypertrophic cardiomyopathy, mild diffuse CAD in LAD and CCX, cath 8-05, Mild Mitral regurgitation, Paroxysmal atrial fib, failed Norpace, cardioversion 3 times in 12 months-all failed. A few days after his last cardioversion he had a massive stroke.His right carotid artery was completely blocked. He has gone into heart failure several times but the Lasix they gave him last time seems to keep it under control. Due to his irregular heartbeat his blood pressure is hard to get most days. But it has been running very very low. It makes him tired and he sleeps a lot. His needs are overwhelming for me most days, but I keep at in hopes he will improve. My wish is he can at least get to the point he can go to the bathroom by himself so I can leave him alone to run errands for an hour or two. My biggest question : is it his heart that is interferring with his stroke recovery? Prior to his stroke he was tired all the time, slept a lot during the day an at least 10 hrs at night. That is why he was so keen on getting his heart in regular beating because when it is not he suffers greatly from fatugue.(sp) Due to his condtion no one wants to address his A-fib and so he just sleeps and sleeps or is disoriented and confused. On some days he goes back into Sinus rythm and I can see the diff in him. He is alert and I can take him out in his wheelchair. I dont know what to think anymore. It has been almost 8 months now since his stroke and he has many more bad days then good days. I dont want to put him in a home, but I dont know how much more I can do. Every day I just keep thinking today will be the day he starts getting better. sigh..The nurse states that with his heart and all he has maybe 10 yrs but could be less. His long term memory is still there. It is heartbreaking. If he really only has a couple of years left, then I feel I need to suck it up and do my job..but 10 years is a long time to do this. It is a full time job plus another one. I feel so selfish..but I am so sad all the time...I have no help to speak of...2 days a week the VA pays for a woman to come in to shower him...thats it...I just wish I knew what to do.
thanks all for reading.
Cheryl
Yes, you are right Silly about the family units. My husbands daughter lives in the next state and visits every other month or so but she does not help at all. She has said she feels it inappropriate for her to do bathroom duty with her dad. She is 24. I really dont think thats it at all because a few months ago she asked what she could do to help and I gave her some cream to massage into her Dad's hand and the look on her face that one time said it all. She never did that again. She came up Father's day, but it is really just more work for me..I have to cook more, clean more and take care of him. She will pick up her own dishes..thats it...wont even clean up after a meal. I dont want her not to come back so I dont say anything. she is not my daughter. My son is in CA...so he cant help at all. On the bright side, I took him to the VA clinic yesterday and finally convinced them to get a consult for Cardiology for him. When he spent a week in respite at the VA about a month ago he went into Sinus and he was alert, walking better, talking better, not as confused ect. Then about a week after being home he went back into A-fib and back to hard to even transfer..sigh.....I feel like as soon as I get this hope thing going..I go and get a crash and burn...I just start thinking that maybe things will be ok...then it just goes to pot...I want to discuss with a doctor the sugery they can use to try and correct A-fib....I know it does not always work,,,and sometimes they need a pacemaker after...but it has to be better than this....Also.....his body temp has been running cold for well over a week now....the doctors office did not check his temp yesterday,,,but the nurse who comes in 2 X week said today that he is concerned about him running so cold...today he was 93.6....has been running around 95 lately...not sure if that is a sign of something I should know about...anyhow..thanks for listening...I just need to vent sometimes...and no one to talk to ..
Cheryl
Cheryl
You sound so overwhelmed. Several decades ago, family units used to live together or very near each other and when somebody became ill or elderly, a whole support network was available to help care for them. My mother has often told me about her aunt who had Alzheimers and moved in with them. There were many people around to help with her care. Even caring for newborns was probably easier with such a readily available support system.
Now we all tend to live so far from parents, children, and extended family, that the burden of care for a very ill individual falls almost entirely on one or two people - as you have found. It sounds like it's been very difficult for you - and it's something you wouldn't have been expected to do alone a generation or two ago, or in many other parts of the world.
But here you are, so you're trying to make the best decisions you can. Your question is whether his heart condition is affecting his recovery. It's hard to say, because massive strokes are difficult to recover from, even without heart issues. So it's quite possible that he'd be no better off even with the a-fib resolved. But given that you seem to notice a change when he's in sinus, it would seem reasonable to talk to his doctors about whether there's anything else they'd be willing to try to get him back there permanently. What do they say when you tell them about his improvement when he converts?
Otherwise, it may be that he's not going to improve a whole lot. I wish you peace in deciding how to proceed with his care and in trying to find the time to care for yourself as well...
Now we all tend to live so far from parents, children, and extended family, that the burden of care for a very ill individual falls almost entirely on one or two people - as you have found. It sounds like it's been very difficult for you - and it's something you wouldn't have been expected to do alone a generation or two ago, or in many other parts of the world.
But here you are, so you're trying to make the best decisions you can. Your question is whether his heart condition is affecting his recovery. It's hard to say, because massive strokes are difficult to recover from, even without heart issues. So it's quite possible that he'd be no better off even with the a-fib resolved. But given that you seem to notice a change when he's in sinus, it would seem reasonable to talk to his doctors about whether there's anything else they'd be willing to try to get him back there permanently. What do they say when you tell them about his improvement when he converts?
Otherwise, it may be that he's not going to improve a whole lot. I wish you peace in deciding how to proceed with his care and in trying to find the time to care for yourself as well...
Ah, I'm so sorry you're having to go through all this. It IS tough. My Dad is in the final stages of congestive heart failure after 4 heart attacks and multiple arrhythmia problems. The difference is that he qualifies for hospice care. They come over once a week to give my Mom a 4 hour break. My husband and I go over one day a week to run errands and help around the house. I'm an only child so there's no other family nearby. The rest is up to my Mom. It's exhausting; I can see it in her.
I understand there's a group that provides respite care too. That's a little different but would free you up for several hours to go out and get things done or just have some quiet time of your own. Any friends that could stop in and visit with him while you go out? That might give you a breather.
It's not selfish to want a break. Your body can only take so much stress and fatigue. It's a big change for you emotionally too since he's so different from just a year ago. Give it time, don't be shy about asking for help. And don't feel bad about wanting - no, needing - some rest. Staying strong and healthy is a way of showing love for him, that you want to be there for him. Take care.
I understand there's a group that provides respite care too. That's a little different but would free you up for several hours to go out and get things done or just have some quiet time of your own. Any friends that could stop in and visit with him while you go out? That might give you a breather.
It's not selfish to want a break. Your body can only take so much stress and fatigue. It's a big change for you emotionally too since he's so different from just a year ago. Give it time, don't be shy about asking for help. And don't feel bad about wanting - no, needing - some rest. Staying strong and healthy is a way of showing love for him, that you want to be there for him. Take care.
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