can someone please help me my husband suffered a stroke on 3rd May, he was really ill as it was a large bleed in the brain. After 7 weeks he came home. his left leg and are are affected his swallowing is very poor and food has to be cut up. All this I can cope with but my problem is his time awareness and waking constantly in the night saying he must have his tea or its time for his tablets. We tried giving him a sedative at night but he would wake and then fall over and be totally disorientated.
Is this normal and do others here on the forum suffer this and how do you deal with it. I am just so tired and I get irritable with him and I dont want to do that
please help all this is new to me
My family had similar problems during my stroke recovery. Hopefully you can try some of the tricks my family tried to keep me on daytime schedule.
The most important thing to remember is that he has had a major brain trauma, and the brain shuts down for repair, leaving us VERY sleepy and the sleep is a very important part of his healing process.
As far as keeping his days and nights on track, here are a few tricks my caretaker used for me.
In the morning make the house as bright as possible, opening drapes and windows weather permitting. Feed him at your normal meal hours, which may mean waking him up at mealtimes. Follow a routine everyday, that includes dressing (of some sort) in the morning, and pjs at night. At bedtime have a ritual for him to do (bathing, teeth brushing), and put him to bed. As close to a schedule, any schedule that works for you, that you can keep him the better.
To this day, I can easily slip into a mixed up mess, especially in summer when I have no schedule to follow.
Please be very patient with yourself and your husband, and take good care of yourself. Hopefully you have some support and can schedule in time just for you. Taking care of someones every need is exhausting, and you need some down time too.
I also encourage you to remember that he is the same person he always was, but with a brain injury. Never assume he doesn't know exactly what is being said, done and felt inside, but cannot express himself like he used to.
I have come up with a new language that my family and friends understand, but to stranger sounds like gibberish.
Please always remember that you can come here anytime for support, questions or even to get it all out. We understand here, and welcome you to count on us to help you out anyway we can.
HI Chloe how nice of you to e mail me it seems so much better when you know someone else bothers about you. I have a son who comes and sits with my husband but he works long hours so his time is limited. We are gradually sorting out a routine and have been to the docs today about his tablets but they are a bit worried as his blood pressure is fairly high and they wont give him any tablets as they say the hospital havent ok'd it yet.
Last night was terrible thats why i posted the thread he was up constantly making some noise he sleeps in the guest bedroom so as I can get some sleep.
anyway thanks so much for talking to me will talk again
My father had a stoke last year. He also has affected by time awearness as well as unable to reason with numbers, leaving him unable to deal with money or finances.
1 Year on his time awearness has come on leaps and bounds. we all thought that things wouldnt get better as it was a very slow process but he has come on a long way.
Here are a few things that we tried which helped him:
We created a white board seperated into the days of the week and then morning, afternoon and evening. we then wrote down everything that was planned, like a diary.
To start with he didnt understand morning afternoon and evening but as time went one we used the same language to relate to daily activities ie - lunch time (get him to look at the time on a clock, eventutally they do relate even though it seems they never will. He still doesnt understand the time but he can look at 12pm and see that that is the time to eat)
Eventually the language and the activities along with subject related vocabulary all matched up to help him find his own time awearness.
He still doesnt understand tomorrow or next week or on saturday but when we relate back to the board it makes more sense as he can see the passing of time in a visual way.
The other things we tried were writing the days of the week, times of the day (morning, afternoon and evening) and asking him to order them.
We made sure there were lots of clocks, speaking digital and analogue so we could access which ever one he needed. We also encoraged him to keep trying and to use the light outside and the meal times as focus points.
It may seem like a million years away but it does get better.
The tablets was a difficult one as he swore blind he had/hadnt taken them already. we bought a pill box and that helped visually this was accompanied by a 24 hour timer to remind him to take them. We gave him this responsibility and he welcomed it. we just checked it when he wasnt looking.
Sleeping is another one. they now sleep in seperate rooms and if he gets up in the night then so be it. Stroke patients sleep SO much so he will catch up on it during the day. If you are worried about him being alone during the night encourage him to listen to music in bed using a CD player and headphones, this really helped my dad, often drifting back off quickly. We encouraged him not to get out of bed until it was light to help with time sequencing so his bed was near a window so he could check.
I know it is very hard and i really hope this helps you. While my father is affected in one way another family friend was affected in a totally different so what helped my dad may not help your husband, but anything is worth a try in my mind!
Hope this helps. If you have any questions do let me know.
hi there thanks so much for taking the time to answer my questions and give me hope it is really hard right now my husband is so out of it and we often argue about taking tablets he swears he hasnt had them and other things. I try to keep calm but tiredness takes over as you well know. We now sleep in separate beds its easier and I have taken note of all your little tricks and methods of getting through this dreadful time.
you are all such lovely people I dont know how I would of got through if it werent for the help of friends family and of course you good people who pass on your harrowing experiences in order to help some other sole
god bless you
[I] had a major brain bleed and had similar problems. I was also medicated and found myself trying to figure out days and times by the light outside the hospital window. This caused me to call home at weird times waking people up. When they told me the time or day and I saw how wrong I had been I was so embarrassed that soon I would not want to communicate at all.
I was so tired I wanted to sleep all the time which I needed for brain repair but sleeping a lot also increased the disorientation.
What helped me is what the other folks here are saying, a lot of external stimuli to help me keep it straight. A white board with the date on it changed every day at 7am. A large calender the kind where when the day is over you pull that date off the calender and throw it away and the new date is now right on top.
a big clock i could read half asleep and drugged and a routine I knew in the hospital. e.g. the clock says 9:00 it must be pm cause if it was am they would make me get up and be at breakfast.
it took time but about 6 months to get it all back but in retrospect i see little improvements were made every day. Your husband stroke is very very new I would bet he is still re absorbing the clot and trying to build new neural pathways. I know its hard on you I know its hard on him...patience reminders and routine will help alot........and he will get better
Hi thanks so much for your kind reply I am noticing minute changes for the good now he seems better in small ways and I am implementing subtle changes ie the board telling the time and a calander with date change on. We are adapting to our new roles more now I am carer he is the dependant but I dont think he always will be I pray I will get my old husband back..Thanks so much for your help this site has been invaluable to me i read it ever day for new messages I hope you continue to be well god bless you
So many of us stroke survivors and our caretakers do find such relief when we support each other. The doctors have their place, but there is so much more! Stroke in particular, is something that cannot be explained or understood without first hand experience, and while each of our strokes have such different causes, the recoveries are often quite similar.
I know, as a survivor, having a caretaker is a very new thing to accept, while for the caretakers, it is just as shocking. The more we can share between us, the better both parties can thrive in their new roles.
The constant effort to communicate when you can't ever get the words together is very frustrating, and the more you offer as tools to use together, is comforting. My family and I have developed a whole new language, that works for both of us.
Whatever you do, I encourage you to always keep your reserves up, in rest, and outside interests, if you have the support. If not, it would be a good thing to put together for yourself...a few times a week where you can just get away for a few hours, knowing your husband is in good hands.
I love all the ideas about the white board, and the big clocks, calenders, etc...
Jude, we are always here for you, anytime, and welcome your questions and concerns...It is a long process, but there is such possibility for recovery, given the time. The one thing that my man did for me that I really appreciate, to this day, is to allow me to do whatever I feel like, for as long as I can, and then to rest for as long as I needed to. As simple as that sounds, that was such a gift...just knowing I had all the time in the world to get better.
Sorry to hear about husband and his recent stroke. The effects of stroke are devastating not only for the patient but for the family as well. It truly is early in his recovery and everyone progresses at their own pace. Since he is having difficulty with time, one way to start to help him retrian his brain and overcome this barrier is to develope some time of schedule for him. This worked best for me when my oldest son was younger. He has a birth injury that left him with brain damage. As he was growing and even to this day, he needs to have some type of schedule for his activities to stay focused. We try not to deviate too much from his daily routine.
Just remember these are difficult times for you as well. You will need the help of others to get through this period, even if it only means having someone come to sit with your husband so you can get out for a few hours.