I really don't know where to start..so many things go through my head all the time...
My husband had a stroke 10 months ago...although I know that he is so much better off than a lot of others who have had strokes, it is still hard to realize that this, once very active man, is no longer the man that he used to be..
He is able to speak really well, and his memory is quite good..he does have trouble with his vision at times, and particularly when it comes to telling time...that is still a mystery to him..
He is also very anxious, and very insecure...he has to call me by his side at least 20 times a day, to let me know how sorry he is, how much he loves me and how much he thanks me...I know that is very, very wonderful for him to do that, but it does work my nerves, as it gives me little time to do my other chores around the house..he has become very needy...I just take a deep breath, and go to him..
He has come a long way since his stroke, but he is still incontinent at night..for the most part, during the day he can let me know when he has to go to the bathroom, and a lot of times those are false alarms, but they can't be ingored, so we go to the bathroom sometimes, as much as 20 times a day...but it is still better than having wet pants..in the mornings, he still wakes up wet, but I think that is mostly because he can't stay up past 8:30 or 9:00pm, so that's a long time to expect anyone to stay dry...
He goes to therapy 1 day a week, which isn't enough, but luckily we have a wonderful caregiver, who does a lot exercising with him, and she walks him every day for about 30 minutes..she is a god send to us! I'm sure he will always need help walking, but I might be wrong, so I'm trying to keep the faith...
He has a little movement in his arm, but not much, so that means he will never be able to use a walker...as of now, he is using a cane, but struggles to walk...I'm hoping that improves..
As it stands now, we are pretty much "house bound", as he tires too easily, and doesn't seem to stay focused long enough to take him anywhere, for very long...he does have friends who come for visits, and he always enjoys that, but after about an hour, he needs to rest...
I have been told that sleeping a lot is normal, as that is how the brain heals, and I am hoping that is true, as he sleeps an awful lot on most days..and at night he goes to bed around 9:00pm, and doesn't wake up until 7:00am, and is ready for another nap at 9:30am...
I guess the reason I am writing is to put down on paper some of my thoughts...this is a long, lonely road that is in front of us..even though we have family and friend support, we are really in this journey alone...we are the ones who live it 24/7....no one can really understand, except someone else who is going through, or has gone through this bumpy road..
Would love to hear from others out there who are experiencing some of the same struggles, and let me know how you are handling them...maybe I can learn how to be a better caregiver to my husband....
Thank you for letting me blow off some steam...it does help..
The following 2 users give hugs of support to: nonnie122 iansdaughter (06-15-2011), JJ (05-26-2011)
"Blowing off steam" can really help when you're speaking to people who understand.
I can say that the sleeping is normal. It seems the worse the brain injury the more sleep is required.
Often being the caretaker is harder than being the patient, since there's nothing you can do to make it all better. It's frustrating, heartbreaking and exhausting going frombeing a parter to being a nurse. Many people also feel guilt about being impatient or "fed up". You just want everything to be the way it was. That might come, but the road to getting there is rough and you're so right - it IS very lonely.
Can you get someone to stay with your husband from time to time so you can do things for yourself - things you enjoy and that make you feel better, like seeing friends, going to a movie, shopping etc. Your husband must learn to be just a little more independant of you.
I'm sure you're right that therapy one day a week is not enough. Maybe if you look around and make inquiries there might be a way to get it more often.
You might even want to consider a support group for caregivers, but until then feel free to hang out here and blow off that steam!
The Following User Says Thank You to Chloe1252 For This Useful Post: nonnie122 (05-26-2011)
Wow, how nice to talk to someone who "gets it"....although our friends are definitely here for us, they really don't "get it"....you have to live it, to get it....
Sometimes I get angry at my husband because he isn't who he used to be, and then I feel so damn guilty about it..luckily, he is able to communicate with me, so I "think" he understands, but not sure...I just wish he were "here" with me, and not in his head so much...even with him in the room with me, I still like I am alone most of the time..
I have a caregiver that comes in Monday thru Friday for 90 minutes every morning, from 8:00am to 9:30am...that's when I can get my shower, and run to the store, if I need to..it's amazing how just a little time out of the house helps so much..I also get 4 hours every Tuesday, which is great, but it's still an 8:00am start, until noon...usually stores are not open that early...I have been known to go to the nearest McDonald's, for their coffee, and a good book...it does seem to help..of course, I could have her a whole lot more, but, as I'm sure you know, that can get quite expensive...$20.00 per hour, but I do plan on getting out a bit more during the summer months..I feel that I need to do that for me, even if it is going to be pretty costly...
Tonight I am going to watch our grandson graduate from high school, and it will definitely be a bittersweet moment...his "papa" has been the only male in his life, and now he hasn't been able to share in this exciting Senior year..he is missing so damn much, and I can catch myself getting pretty resentful, if I don't reel those emotions in...
I have contacted 3 support groups, but so far, have only heard back from one...that is something that I know would do me a world of good...
We live in a Del Webb community, and you would think that they would have a support group here, but no such luck...
Well, again, thank you for letting me ramble on and on..it does help...
although our friends are definitely here for us, they really don't "get it"....you have to live it, to get it....
Oh for sure. I never needed care after my stroke (I was lucky) but I was a caretaker/nurse/doctor to my husband. Not only is this a 24/7 job, but you must remain upbeat and cheerful even when your heart is breaking and you're so angry you just want to throw yourself on the floor and have a tantrum and scream "It's not fair!" You can feel you want to walk out the door and not come back until everything is back to "normal". On top of all this, you're faced with the fact that you may lose the most important person in your life.
Friends and family might visit and not see anything so terrible, not knowing the pressure and fear you feel all the time.
People who have not dealt with this type of situation tell you, "Oh, you're strong!" when you're not, but what alternatives do you have?
nonnie...First of all welcome. You will find many nice folks here who are more then willing to listen, even if we aren't in your shoes.
My hubby had a slight heart attack last Nov....luckily it was mostly a blocked artery so no damage to the heart, but I do understand how you feel. He had to have Angioplasty with 2 stents. When he came home he told me NOT to baby him which of course I didn't, nor do I do now, but he does get tired very easily. Along with the heart problem he has a breathing problem as well, so yes, I do make sure he has help doing many things. Seeing there is just the 2 of us, as all kids are out of state, I also get to do things he used to do.
Many times he gets totally frustrated with himself and although I try to tell him.."hey, I can't do all the things I use to either"..he gets angry at himself as he feels he is pushing too much on me. Even though I try to reassure him he is doing fine and I kid about my "extra" chores being my exercise, I know he feels like he is being a burden at times.
As Chole said, give yourself a break whenever possible..it really does do wonders for you. Of course we have days when we feel like we need a break so your feelings are VERY normal. Hopefully in time things will continue to get better. Anytime you feel over whelmed, we are here for you. Hope you enjoyed the graduation.
All my best...JJ....
When you come to the end of your rope..tie a knot and hang on!
The Following User Says Thank You to JJ For This Useful Post: nonnie122 (05-26-2011)
hello Donna, and welcome to our family of stroke survivors. so sorry you've the need to find us I think I'm the most senior survivor who frequents this forum? I'm just over 18 1/2 years post stroke.. 10 months is still rather early in stroke recovery terms, though it seems like years to you I'm sure! you don't mention your husband's impairments after his stroke? but, I can tell you that fatigue and anxiety are both very normal for quite a while, even years post stroke in cases. you don't mention your husband's age, I was 42 years old at the time of my stroke, about to turn 61 in August. I know it's frustrating for you that he always wants you by his side, I was the same way with my wife for a while. he will get better walking with less struggle with his cane in time, but it goes slow. he must build up his courage and endurance. it took me about 5 years to feel comfortable walking with my quad cane. I agree he needs more than 1 day a week of therapy, much more! I had a full 3 years f therapy in the hospital and rehab, plus another 2 years in self sought therapy straight and still seek more intermittently as I feel I'll benefit from it. remember you must take care of yourself as well in order to care for him. you might check with your local social services dept. they may be able to set you up with a community reintegration service? that will come in every day for 4-6 hours to give you some sort of respite. they came to me every day or 5 days a week for two years while my wife worked. cause I wasn't allowed to stay alone, it was paid for by my state PA. they took me anywhere I needed to go. doctors, therapy, to the store, or even to visit my friends. my doctors ordered a Y membership, they took me there for exercises, I gained most of my balance by going in the pool about waist deep and walking just back and forth across the pool. it was fun, healthy, beneficial, and got me out of the house. plus my wife didn't have to worry about me. as frustrated as you are, try to imagine how frustrating it is for him! he lost his identity in this stroke? we men like to place our value on what we do for a living and what we can do! all at once he lost all of that?
another thing I'd like to point out to you, as I was told us men who suffer a massive stroke, do for some reason? have the need to urinate more frequently than before stroke. I remember after I left the hospital for good, my wife took FMLA leave and we went to Florida for a vacation. one night in a motel, I had a habit of having a smoke every time I got up from bed to urinate, on this particular night I smoked a pack and a half of cigarettes. that's 30 times I got up to urinate! it settled back to normal after some time. but this was just over 3 years after my stroke. I too told my wife how sorry I was/am all this had to fall on her shoulders, how much I love her, still tell her at least 15 times a day or more so it's been a good thing?
he is probably depressed as well as anxious? probably can't sleep well and is scared! his doctors can give him meds. for the depression and anxiety, I'd stay away from trazadone for anxiety though I was on it for years for anxiety and sleep. I can't say it didn't help who knows? what I can tell you is one morning I woke up with the most painful erection you could ever imagine! it's a side effect of the drug I swear I had to go out on the porch and urinate over the railing. there was no way of aiming it into the toilet. the doctor warned me of the side effect but I just kind of laughed it off, (it couldn't be that painful) boy was I wrong! I swear you could've hung a weeks worth of wash on it to dry? no it wasn't that long but it was that stiff. I advise everyone who had a stroke to be tested for PTSD once my doctor prescribed me a med. for that my life, sleep and everything in between has been much better. your husband will improve just be patient it takes time.
also try to follow my 4 A system Asses Accept Analise and Adapt he/you can do much more than you think, if you think it through?
good luck and god bless
beauty is not only in the eyes of the beholder but also in the hearts of the afflicted
happiness is a way of life, not a goal in life, success comes in cans not can'ts
Thanks for giving me some guidelines to understand...my husband is 76 years old, and the stroke has affected his left side...has very little movement in his left arm, and moderate movement in his left leg...he can walk a little with a large quad cane, but only for a short period of time..I'm hoping he gets stronger and stronger...as it stands now, he is pretty much house bound...
When the weather warms up, my goal is to learn how to get him into, and out of the car, and then, at least, I could get us out of the house periodically for a nice drive, and enjoy some sunshine..
Oh, believe me, I know that this is very hard on him...he was always a very active man..hunting, fishing, camping, etc..now his world has just stopped, so I know he has to be very frustrated..I truly feel for him, much more than I feel for myself...I still can get out and do things, but he is very limited...it breaks my heart to see him like this, and I know that is what makes him so anxious all the time..
Again, thank you for your response...all of the emails that I have received have been very encouraging..
Well, it's not something I like thinking about or ever talk about, but after my stroke I would get up in the morning and not quite make it to bathroom on time. I was horrified, until I realized the paralysis no doubt included the bladder. I still don't have 100% control the way I used to.
Yes, do try and get your husband outside in the sun as Coupe mentions. For a variety of reasons (stroke fatigue, hip injury from falling, increased intolerance of heat and cold, flu, back injury) I didn't get out much last year. The result is a vitamin D deficiency I now have. Getting out is very important for that and many other reasons.
The Following User Says Thank You to Chloe1252 For This Useful Post: nonnie122 (05-27-2011)
Hello my friend. What you wrote is so perfect, I could not have wrote it myself. Everything you wrote is normal believe it or not from a stroke. You wrote so much, so I can only tell you one thing at a time. I would like to say about him being clinging. That is a good thing. You know he really loves you. There are only two emotions after a stroke, and that is love or hate. So he is a good one. All of his emotions are normal. I went through about 4 months on crying every day after my stroke. My wife was worried, but I told her, don't worry i just can't help it I need to cry. and she let me cry and cry and cry and one day, it was gone. I have no reason for it, but she let me be who I was at that time and that is what I needed at that time.
There is no medical thing to help the emotional side from a stroke and that is just a important.
I am sorry, but there is no easy answer to his stroke problem. You have to be patient with him. He obviously loves you. If you can just affirm that and let him go.... he is not crazy. He is just confused. His brain and manhood where just taken away from him. Men are very arrogant and can do everything. And in an instant your manhood was taken away. so don't worry about him being clingy. give him some space and let him cry and sleep when he needs to. It is very normal believe it or not. Just let him be his own and he will come around. Just don't worry about it. He has to be his new person and is hard, but you two can do it togeter. Just like me and my lovely wife did. but it takes alot of time
The following user gives a hug of support to Positive Cynic: nonnie122 (05-27-2011)
Boy, your email couldn't have come at a better time for me...I have kinda down today..but your email really lifted my spirits...
Thank you for giving me your side of a stroke..I try to understand what my husband must be feeling, but it is so hard sometimes...I REALLY try to give him his space, and let him be, but I guess, deep down, I am hoping for him to be like he used to be, and I have to get over that..
He is who he is now, and he is still just as loveable to me as ever, so, in my down moments, I will try to remember what you told me...it really helped...
Thank you again..
Hello. and thank you. But yes, you have to understand that he is a different person now. He doesn't like it either, believe me. But you can do it together. If he is able to write, maybe he could talk to us here. There are so many people that understand what he is going through. This silly little forum was 99% of my continuing recovery. It made me be able to write again. and make sentences and thoughts that were all jumbled after my stroke. Let him try it. I know it is scary at first. But when you get over that. this place has nothing but love and help. what ever he writes we understand. he doesnt have to be perfect. I call it "stroke speech" and everyone knows what I mean. So I wish you and hubby the best. and if you need something you can write it here.
Last edited by Positive Cynic; 05-28-2011 at 06:43 AM.
The following user gives a hug of support to Positive Cynic: nonnie122 (05-28-2011)