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13 Comments
Posted by
spacie1 
The most difficult part of Gary's stroke recovery for me as a caregiver is the short-term memory loss. Aside from dealing with the physical disabilities, the emotional loss of a partner to stroke survival, and the fatigue from caring for that partner, the frustration mounts daily with the short-term memory loss. What becomes even more frustrating is that so many people don’t really understand it.
After six years of constant reminders while trying to help Gary re-learn how to eat, swallow, transfer safely, etc., it is still a constant reminder and there is nothing I would like more than to be able to sit back and watch as he does it on his own – but as many times as I’ve tried and failed, it doesn’t happen. We can go out one day and do a few things, and the next day he won’t remember any of it – it’s gone from his memory, sometimes even with little reminders I throw out to him – Gone!!
I thought I had explained these things well enough to family members so that they understood that I’m not just speaking on his behalf because I’m a controlling wife who won’t allow him to talk, but because he really can’t remember! When someone asks him a question about a recent event, and then says to him “you don’t have to look to Sarah for the answer, you can answer it yourself!” it only frustrates him, makes him feel stupid, and makes me look like a control freak. The truth of the matter is he looks to me because he doesn’t remember – the same as any alzheimer’s patient who forgets things!!! Why is that so difficult for people to understand??
Not only is short-term memory affected by the stroke, but decisionmaking abilities have been gone for six years. So when a friend or relative asks Gary a question about something he would like to do, he doesn’t know – he can’t make a decision. If you ask him what he wants for lunch or dinner or even if he’s hungry, he doesn’t know – and he can’t decide. If I left it up to him to wait for his brain to make a decision on when to eat or what to eat, he would have starved to death long ago. It’s not there – it’s GONE, and I don’t see it coming back …….why don’t people understand this? Is it easier to believe that I, as his caregiver, enjoy controlling him? Do they really think that I somehow take pleasure in all of this because I haven’t freaked out or totally lost it by now? I’m tired of trying to educate others about the affects of a brainstem stroke – obviously some prefer to believe that if it weren’t for me, he would have been their version of “normal” by now. I feel sad for them, but our lives go on, with or without their approval.
Sarah
After six years of constant reminders while trying to help Gary re-learn how to eat, swallow, transfer safely, etc., it is still a constant reminder and there is nothing I would like more than to be able to sit back and watch as he does it on his own – but as many times as I’ve tried and failed, it doesn’t happen. We can go out one day and do a few things, and the next day he won’t remember any of it – it’s gone from his memory, sometimes even with little reminders I throw out to him – Gone!!
I thought I had explained these things well enough to family members so that they understood that I’m not just speaking on his behalf because I’m a controlling wife who won’t allow him to talk, but because he really can’t remember! When someone asks him a question about a recent event, and then says to him “you don’t have to look to Sarah for the answer, you can answer it yourself!” it only frustrates him, makes him feel stupid, and makes me look like a control freak. The truth of the matter is he looks to me because he doesn’t remember – the same as any alzheimer’s patient who forgets things!!! Why is that so difficult for people to understand??
Not only is short-term memory affected by the stroke, but decisionmaking abilities have been gone for six years. So when a friend or relative asks Gary a question about something he would like to do, he doesn’t know – he can’t make a decision. If you ask him what he wants for lunch or dinner or even if he’s hungry, he doesn’t know – and he can’t decide. If I left it up to him to wait for his brain to make a decision on when to eat or what to eat, he would have starved to death long ago. It’s not there – it’s GONE, and I don’t see it coming back …….why don’t people understand this? Is it easier to believe that I, as his caregiver, enjoy controlling him? Do they really think that I somehow take pleasure in all of this because I haven’t freaked out or totally lost it by now? I’m tired of trying to educate others about the affects of a brainstem stroke – obviously some prefer to believe that if it weren’t for me, he would have been their version of “normal” by now. I feel sad for them, but our lives go on, with or without their approval.
Sarah
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achandra
25 July 2010 - 12:52 PM
Sarah:
I feel for you. none of us can make everybody happy all the time. we all have to do what is right and good for our family. people who likes to believe negative things about you and Gary are not friends anyways so why get bothered by these people.
Asha
I feel for you. none of us can make everybody happy all the time. we all have to do what is right and good for our family. people who likes to believe negative things about you and Gary are not friends anyways so why get bothered by these people.
Asha
Ethyl17
25 July 2010 - 07:21 PM
Sarah: those people who are close to Bruce and love him dearly, I leave alone with him or just give him the phone. Doesn't take too long to figure out what is going on, if they care about him. Try leaving the room when they are visiting, they hopefully will catch on. I worry more that Bruce feels I am controlling. Sometimes it just seems he does or tries stuff just because he is sick of me taking care of everything and then again, he does what Gary does-refers to me when things get too overwhelming or confusing. I know that feeling of people suggesting (and I use that word loosely) I am holding him back. We, as caregivers, want nothing more than forward motion but we want safe progress and positive reinforcement. Try doing this 24/7 and then give me your suggestions! A close friend said to me just last week "nobody should be criticizing you" and that's why I love her. Onward and accept a big hug-Debbie
hostkaren
26 July 2010 - 01:36 AM
Sarah I am printing this and giving a copy to Bill and the family and a few close friends Bill is forever telling me I told you that I cant remember what he tells me I have heard that so many times now Its lodged in my one brain cell left. Karen Karen Yes two Karens I am not Karen anymore I am Karen Karen I told you at that point fill in the blanks as I dont know what.... the worst is I get so ashamed What I remember is Karen Karen I am so grateful Bill can remember for me So Sarah you hold that head of yours up high and you keep gently reminding him one day he will thank you Till then Thanks Sarah if it were not for you and all those like you who strive on doin the best you can for us We really love you and our own care givers for being there and managing to somehow not go batty reminding us of all that we cannot seem to remember from breakfast to lunch that alone Dinner Special Hugs Karen
stessie
26 July 2010 - 01:43 AM
Sarah, this would be such a great article for the magazine, Stroke Connection. I would like, with your permission, to print it and share with our Stroke Survivor/Caregiver Group. You have said it so succinctly.
You have such a gift for expressing yourself as a caregiver so that others may learn. I know your daily life is not easy but I thank you for being a part of my life here at Stroke Net. I have learned so very much from you.
You have such a gift for expressing yourself as a caregiver so that others may learn. I know your daily life is not easy but I thank you for being a part of my life here at Stroke Net. I have learned so very much from you.
hostsue
26 July 2010 - 02:11 AM
Sarah, I tell people, you can see the tape recorder but there is NO tape left in there. Ray does the same. People ask him a question and his head swings towards me. I answer the question. I try to phrase it: "Ray and I were discussing..." as we usually have had a "conversation" me talking him going "huh" and then I make the decisions. I know people think I am a control freak in action although I prefer decision making consultant...lol.
If you have a car accident people understand you have a Traumatic Brain Injury (TBI) they don't seem to understand that a stroke, or strokes, can cause similar areas of cell death and resulting cognitive impairment (often known here as dementia).
Sue.
If you have a car accident people understand you have a Traumatic Brain Injury (TBI) they don't seem to understand that a stroke, or strokes, can cause similar areas of cell death and resulting cognitive impairment (often known here as dementia).
Sue.
amie_1
26 July 2010 - 06:10 AM
Oh Sarah,
I think we wear the same hat.... you have put into words exactly what is going on in Dave and my life!!!
People think that I too control Dave, what he says and does and that if I didn't do this or did that he would be "normal"... haha, makes me so angry. They don't get it and nor are they willing to get it!!
I don't have the energy to try and educate them anymore, they don't want to listen, let them think what they want. My energy is going into Dave and our life.
Hugs Anne
I think we wear the same hat.... you have put into words exactly what is going on in Dave and my life!!!
People think that I too control Dave, what he says and does and that if I didn't do this or did that he would be "normal"... haha, makes me so angry. They don't get it and nor are they willing to get it!!
I don't have the energy to try and educate them anymore, they don't want to listen, let them think what they want. My energy is going into Dave and our life.
Hugs Anne
williamharris
26 July 2010 - 06:14 AM
Sarah,
This is truly an article that should be shared. Too many people do not understand. William is the same way. He cannot decide, sometimes, if he is hungry or what he wants to eat. He can sometimes. But, he often needs the reminding. Yes, he looks to me for the correct answers.
People do not understand. Theraptists are especially bad.
You and we, know what is happening. You are doing great. It is hard. I applaude you on a job well done.
Ruth
This is truly an article that should be shared. Too many people do not understand. William is the same way. He cannot decide, sometimes, if he is hungry or what he wants to eat. He can sometimes. But, he often needs the reminding. Yes, he looks to me for the correct answers.
People do not understand. Theraptists are especially bad.
You and we, know what is happening. You are doing great. It is hard. I applaude you on a job well done.
Ruth
merichsen
26 July 2010 - 07:18 AM
Sarah,
Sorry you feel frustrated and upset by other people ignorance.
You stated it best by concluding...you feel sad for them, but life goes on with or without their approval.
It always looks easy and is easy to pass judgment from the cheap seats. If any one traded places with you for a day, it would be clear to see what you do is extremely difficult, takes much love and dedication, and is nothing short of angelic.
You're doing a great job, which friends here who do understand admire and appreciate for Gary.
Maria
Sorry you feel frustrated and upset by other people ignorance.
You stated it best by concluding...you feel sad for them, but life goes on with or without their approval.
It always looks easy and is easy to pass judgment from the cheap seats. If any one traded places with you for a day, it would be clear to see what you do is extremely difficult, takes much love and dedication, and is nothing short of angelic.
You're doing a great job, which friends here who do understand admire and appreciate for Gary.
Maria
fking
26 July 2010 - 08:58 PM
Gary is far from being alone or the only one with short term memory loss. I got it too! I'm in a two story house, remember to get things so I make only one trip downstairs...Never happens! I forget things to do, to get, to put in my pocket or what ever, I can't remember, period.
And numbers, forget it, if they are not in my phone, I'm lost! So we know for sure that it's stroke related. Some worse than others but it is still short term memory loss! The solution, I don't have one, so I just don't think about it, but I get plenty exercise on the stairs for sure!
Sarah, I just wanted to add that the brain is attacked with each stroke, more strokes, more attacks, but even with just one stroke it can be devastating on the brain and if people don't understand that fact we'll never get through to them!
I'm proud of your strength and courage along with the other caregivers who work relentless to keep the loved ones operating when other people can't understand the care and sacrifice you put in to a marriage!
You, Gary, Sue, Ray and many others here are in my daily prayers along with my wife too! I wouldn't be where I am had she not stuck by my side as you all are doing! You got my praises always! Fred
And numbers, forget it, if they are not in my phone, I'm lost! So we know for sure that it's stroke related. Some worse than others but it is still short term memory loss! The solution, I don't have one, so I just don't think about it, but I get plenty exercise on the stairs for sure!
Sarah, I just wanted to add that the brain is attacked with each stroke, more strokes, more attacks, but even with just one stroke it can be devastating on the brain and if people don't understand that fact we'll never get through to them!
I'm proud of your strength and courage along with the other caregivers who work relentless to keep the loved ones operating when other people can't understand the care and sacrifice you put in to a marriage!
You, Gary, Sue, Ray and many others here are in my daily prayers along with my wife too! I wouldn't be where I am had she not stuck by my side as you all are doing! You got my praises always! Fred
Ernestine
26 July 2010 - 10:25 PM
Hello,
This was my first time reading the message board. As a caregiver there is so much I can identify with. I work full time and care for my sweet 82 yr. old mom. She had a stroke 2-5-10. We are learning how to live our lives doing the things we enjoyed doing together before the stroke in different ways. We so grateful to be home together after 3 months at a rehab.
Thank-you for this awesome site. It has already been helpful.
Ernestine
This was my first time reading the message board. As a caregiver there is so much I can identify with. I work full time and care for my sweet 82 yr. old mom. She had a stroke 2-5-10. We are learning how to live our lives doing the things we enjoyed doing together before the stroke in different ways. We so grateful to be home together after 3 months at a rehab.
Thank-you for this awesome site. It has already been helpful.
Ernestine
alpinejunkie
28 July 2010 - 11:28 AM
Sarah,
My experience is similar, but less severe. I had a large clot in my brain stem. But it broke up and only left a small stroke in the stem but small clots traveled to and caused strokes in almost all the other lobes of my brain. I was left partial blindness, cognitive deficiencies, damage executive functions, attention concentration disorder, central pain syndrome and most troublesome for me… short term memory loss. My cognitive therapists and neuropsychologist helped me with a hole system of compensatory stuff like continually writing notes, alarms, signs, digital recorder etc. My wife even photographs almost everything we do. I am lucky because with lots of prompts my wife can usually pull memories out. I am always looking to my wife as my “backup memory”, almost every time I get asked a question. It is almost impossible for me to have a conversation with more than one person because the train of though moves much faster than my brain can go.
I tell you this so that you can see that what I say comes from a person who experiences something similar, but I without a doubt not as severe, to what you husband experiences. But I can tell you what I feel when my wife steps in and makes decisions it appears to others as if she is “taking control”. I spend my whole life so overloaded with information the world provides, mostly because my brain can’t move fast enough or retrieve information to process it. When I look to my wife for an answer it is out of desperation, sometimes embarrassment. I know it is burdensome for her to constantly answer questions for me, to remind me to take Rx, to remind me to eat or I will not eat all day, the list goes on. I also know it frustrates her that we go for a nice outing or anniversary dinner and then I don’t remember it without pictures and intense promping on her part.
I may not have been thoughtful enough to ask her if having to help me in front of others bothers her, I’ll have to do that. What I do know is that the love, friendship, companionship and intimacy that I feel for Michele as I see what she has done and continues to do for me, lifts me above even the darkest times of my strokes. The true human to human love that she shows me has been a life changing thing for me and I’m sure it has for your husband also. We try to focus on the gifts we give of each other more than the noise around us. Right now Sarah, just like Michele, you are heroically giving more than you are getting. God bless you.
Dave
My experience is similar, but less severe. I had a large clot in my brain stem. But it broke up and only left a small stroke in the stem but small clots traveled to and caused strokes in almost all the other lobes of my brain. I was left partial blindness, cognitive deficiencies, damage executive functions, attention concentration disorder, central pain syndrome and most troublesome for me… short term memory loss. My cognitive therapists and neuropsychologist helped me with a hole system of compensatory stuff like continually writing notes, alarms, signs, digital recorder etc. My wife even photographs almost everything we do. I am lucky because with lots of prompts my wife can usually pull memories out. I am always looking to my wife as my “backup memory”, almost every time I get asked a question. It is almost impossible for me to have a conversation with more than one person because the train of though moves much faster than my brain can go.
I tell you this so that you can see that what I say comes from a person who experiences something similar, but I without a doubt not as severe, to what you husband experiences. But I can tell you what I feel when my wife steps in and makes decisions it appears to others as if she is “taking control”. I spend my whole life so overloaded with information the world provides, mostly because my brain can’t move fast enough or retrieve information to process it. When I look to my wife for an answer it is out of desperation, sometimes embarrassment. I know it is burdensome for her to constantly answer questions for me, to remind me to take Rx, to remind me to eat or I will not eat all day, the list goes on. I also know it frustrates her that we go for a nice outing or anniversary dinner and then I don’t remember it without pictures and intense promping on her part.
I may not have been thoughtful enough to ask her if having to help me in front of others bothers her, I’ll have to do that. What I do know is that the love, friendship, companionship and intimacy that I feel for Michele as I see what she has done and continues to do for me, lifts me above even the darkest times of my strokes. The true human to human love that she shows me has been a life changing thing for me and I’m sure it has for your husband also. We try to focus on the gifts we give of each other more than the noise around us. Right now Sarah, just like Michele, you are heroically giving more than you are getting. God bless you.
Dave
RLT
29 July 2010 - 08:35 AM
Well said Sarah! I understand your frustration. How many therapist have asked me to leave because I don't let Dick express himself only to have Dick refuse to return because he was lost without me there. And these are "professionals". I wish we could have a copy of your blog to hand out!!
Ruth
Ruth
Gwendoline
01 August 2010 - 11:05 PM
Hi Sarah
This is my first comment since joining the group. I understand totally what you are saying as that is exactly how it is for me. I have been carer for my husband Eric full time for the last 2½ years and at first I used to get really frustrated with the fact that he did not talk to me and always looked to me to answer questions people asked of him. I have learnt a lot like you over the last few years.
Gwendoline
This is my first comment since joining the group. I understand totally what you are saying as that is exactly how it is for me. I have been carer for my husband Eric full time for the last 2½ years and at first I used to get really frustrated with the fact that he did not talk to me and always looked to me to answer questions people asked of him. I have learnt a lot like you over the last few years.
Gwendoline
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