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Old 06-01-2012, 03:26 AM   #1
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Melio HB User
Worried about Mum

Hello,
My mother is 66, and last week, on Wednesday morning, she had a stroke on the train to work. She was lucky that some people helped her, and got an ambulance to meet them at the next station. She is in a hospital that is about an hour drive away, and they are not sure when she will be able to be moved closer to home. She had an Ischaemic Thrombotic Stroke on the left side of her brain. The Clinical Nurse Consultant showed me the CT scan they took the day it happened and explained that quite a large wedge shaped portion of the left side of her brain has died.

She cannot move most of the right side of her body, cannot swallow or speak. They also think the vision in her right eye is blurred. On Tuesday she managed to sit on the edge of her bed and balance for a few minutes. She has also begun to make some sounds over the last few days, and she seems to understand what people say to her. They have gotten her to swallow some liquids a couple of times, but said after a few mouthfuls it seems like she forgets what to do and can't swallow again. I am trying to stay positive, and visiting her on any days when my other family members can't make it. I am also writing her positive messages so she can look at them when I'm not around. The social worker has been saying to me over the last few days that they are very worried about her, that she may end up needing more care than I can offer her, and she may end up having to go to a nursing home. This was always her worst nightmare; not being able to look after herself. She always used to say that she'd rather be dead than end up like that, so I imagine she must be feeling very depressed right now. But I think maybe she never imagined that she would end up like this at this stage in her life and maybe that it would be when she was a bit older.

The CNC has said she is going to go for a Modified Barium Swallow Study on Monday or Tuesday, and the outcome of that will determine how they will be able to feed her in the future. But he also said that depending on the results of that, my family will need to have a meeting to discuss her future care, and what she would want, etc..

Next month will be 20 years since my father passed away. She brought up me and my 3 older brothers and older sister on her own. My son, who is 6, and I have been living with her in her house since he was a month old, so he is very close to her. It is heart breaking to see her like this, she was always such an independent person and I feel like she must feel almost trapped inside her own body at the moment. I love her so much. I just wish that she could get better, but the CNC says that it is looking like the best scenario would be that she may regain some movement, but never regain full mobility. I am feeling very scared and worried about her at the moment.

Thank you for reading this, I think I just needed to get it all out.

 
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Old 06-02-2012, 08:06 PM   #2
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salgal57 HB User
Re: Worried about Mum

Quote:
Originally Posted by Melio View Post
Hello,
My mother is 66, and last week, on Wednesday morning, she had a stroke on the train to work. She was lucky that some people helped her, and got an ambulance to meet them at the next station. She is in a hospital that is about an hour drive away, and they are not sure when she will be able to be moved closer to home. She had an Ischaemic Thrombotic Stroke on the left side of her brain. The Clinical Nurse Consultant showed me the CT scan they took the day it happened and explained that quite a large wedge shaped portion of the left side of her brain has died.

She cannot move most of the right side of her body, cannot swallow or speak. They also think the vision in her right eye is blurred. On Tuesday she managed to sit on the edge of her bed and balance for a few minutes. She has also begun to make some sounds over the last few days, and she seems to understand what people say to her. They have gotten her to swallow some liquids a couple of times, but said after a few mouthfuls it seems like she forgets what to do and can't swallow again. I am trying to stay positive, and visiting her on any days when my other family members can't make it. I am also writing her positive messages so she can look at them when I'm not around. The social worker has been saying to me over the last few days that they are very worried about her, that she may end up needing more care than I can offer her, and she may end up having to go to a nursing home. This was always her worst nightmare; not being able to look after herself. She always used to say that she'd rather be dead than end up like that, so I imagine she must be feeling very depressed right now. But I think maybe she never imagined that she would end up like this at this stage in her life and maybe that it would be when she was a bit older.

The CNC has said she is going to go for a Modified Barium Swallow Study on Monday or Tuesday, and the outcome of that will determine how they will be able to feed her in the future. But he also said that depending on the results of that, my family will need to have a meeting to discuss her future care, and what she would want, etc..

Next month will be 20 years since my father passed away. She brought up me and my 3 older brothers and older sister on her own. My son, who is 6, and I have been living with her in her house since he was a month old, so he is very close to her. It is heart breaking to see her like this, she was always such an independent person and I feel like she must feel almost trapped inside her own body at the moment. I love her so much. I just wish that she could get better, but the CNC says that it is looking like the best scenario would be that she may regain some movement, but never regain full mobility. I am feeling very scared and worried about her at the moment.

Thank you for reading this, I think I just needed to get it all out.
Thank you for sharing this. It is always difficult to see a parent who was independent become totally dependent on others for care. I think we, as the child, look to the parent to be able to take care of, comfort and advise us, as they did when we were young. So when the roles reverse, it takes awhile to accept that we are now the ones that must provide the care, comfort, and direction they are in so desperate need of. My mom passed away in a nursing home in 2000 and I witnessed a scene there that was very telling. A man in a wheel chair was being visited by his daughter and she was standing in front of him, speaking to him as if he could respond to what she wanted him to do. Later I saw another family member kneeling by his wheelchair, stroking his hand, and speaking words of comfort to him. She had accepted her father's disability and was willing to come down to his level, whereas the other daughter seemed not to have accepted his limitations. I'm not judging, it was just something I saw and remembered very clearly. My father was at my home for a little over 2 years, bedridden and on hospice. The hospice nurse told me she had the most difficulty with family members who have trouble accepting their loved ones medical issues. So I would just encourage you to come to a place of acceptance of what has happened to your mother and focus on what 'is' instead of what was or what you wish it to be. Find ways to express your love for your mom in her present condition. Be her advocate if she is in a nursing home. And when she leaves this earth you will be satisfied that you did everything you could to let her know her life was valuable.

 
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Melio (06-09-2012)
Old 06-03-2012, 01:29 PM   #3
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Re: Worried about Mum

Hello Mello, and welcome to our family of stroke survivors and those who love them. We are very happy you have found this wonderful place of support and understanding.

The act of getting these very deep and difficult feelings out is a very important, as you seem to express the feeling of relief from it. We are always here to listen, to respond and mostly to understand what you are going through.

The feelings you perceive your mother to be having are very real, she is likely very scared and mostly confused as to what has happened to her. The presence of your family around her is very comforting, and she is likely going to be very sleepy. This time of rest is very normal part of recovery.

The things you describe about her before her stroke, is exactly what will help her recovery. Her determination and sense of independence will be her strength now too. It will take time, stroke recovery is slow, but please read some of the inspirational stories of other moms and dads who have surpassed all the doctors guesses, came home and began to walk and drive and get back to life. Yes, there are frustration, and it is very difficult. I recovered myself from 4 strokes 9 years ago, and had very limited function for a few years, Now I am back! I came here to learn to think again, to write again, and to re-build myself, in the face of everyone else here. They helped me, they understood me, and they loved me.

I offer those same things to you. You are welcome here, to write, to cry, to rant to rave, what ever we can do to help you we will do. We will stick by you as you stick by your mom. So happy you found this wonderful place at the time you need us most.

Janet

 
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Melio (06-09-2012)
Old 06-04-2012, 08:32 AM   #4
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me192 HB User
Re: Worried about Mum

Melio,

Hang in there! My Mom 82 had the exact same stroke Feb 21st. She still to this day have no movement on her complete right side and cannot speak. There are days that we feel she understands everything we say and maybe a couple of minutes later she somehow goes into a different state. She had a feeding tube and then I insisted on the swallow test and she graduated to pureed foods. I then insisted again for another test 6 weeks later and now she eats most foods but still cannot have water or thin liquids. It was very difficult to send her to the nursing home to say the least. She went first to rehab but then when they said she was not progressing at all, rehab and speech therapy stopped. We have not given up hope. My dad who is 84 goes back and forth 3 times a day to feed her and take her out of her room for wheelchair walks around the facility. Me and my brother go on alternate nights. I do my own speech with her and I try to get her to imitate me, but still nothing...but I will not give up. It is important that you try to communicate with her as if she understands because she might. I am reading the book Stroke of Insight, and I have learned a great deal of what stroke victims go through. It is not 6 months for my Mom yet, most say that her brain can continue to heal everyday. It is very hard to see her like this, boy she loved to talk and tell us stories....I used to talk to her on the phone 3 to 4 times a day. I would give anything to have her speech back! Reading these boards helps a great deal as well. I will pray for you and your family!

 
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Old 06-06-2012, 02:44 PM   #5
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Re: Worried about Mum

Me, That is wonderful advice, and how inspirational your story is about your whole family pitching in to keep your mother going. It is very true about six months being very early in stroke recovery, and the constant and unwavering support you are showing her is beautiful.

When I was early in my recovery, and as many stroke survivors will tell you, we can often understand very easily, but the ability to respond can vary tremendously.

You might find alternate ways of communication other than pure speech. Just as we can often communicate through non verbal cues, with those from other countries, the same can be true for stroke survivors.

As you have mentioned, she will be able to express many thoughts non verbally, and you have to seize those times she is most able to communicate. I would trust in your own instincts as far as when she is most receptive, and when she is not. There will be times when her brain is just not with it, as it is likely performing other vital functions. During those times it is ok and preferable to let her rest. Both ends of the therapy are necessary to recover, in my opinion, as in letting her rest and pushing her along.

Wishing you the best, and keep posting.

Janet

 
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Old 06-09-2012, 05:44 AM   #6
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Melio HB User
Re: Worried about Mum

Thank you all for your adviice and words of support. We've had a hard week because of a meeting with some clinicians about her future. It has been decided that rehab is not an option at the moment because she is not able to move her limbs on her right side at all. I am still gently moving her affected limbs so that the joints don't stiffen up, and giving her massages whenever I go in. The good news is, she is able to feed herself now, with someone holding the plate still. And she has been given the opportunity to practice with a wheel chair that can be operated by just one arm.

The people working with her were worried that while she is able to understand verbal communicatioin, they were doubtful that she is able to read. I told her about this the other day, and asked her if she is still able to read, which she responded with giving me a look as though I was stupid. Haha. But I said that I need her to show me, handed her the alphabet sheet of paper she has, and asked her if she could find the letters to spell Mum. Which she did, so that is another thing she can do. I think sometimes her brain might get confused, so she holds something upside down until she realises she has got it up the wrong way, so the OT thinks that she isn't able to read anything. But I could be wrong, I'm not a neurosurgeon, or a stroke survivor, so I don't feel as though I know that much! I also think that maybe she isn't ready to admit that she might need those types of aides at the moment. For now it is just an elaborate game of 20 questions combined with charades. I don't bombard her with questions, it is just if she seems to want something, and I'm not sure what she is trying to say, it can take a while for me to figure it out, if I am able to at all. I know it must be so frustrating for her.

She has been told by the Social Worker that she will need to go to an Aged Care Facility. She seemed pretty upset by it, which is completely understandable. We are all upset, but know that it is for the best for now.

me192, I will have to try to find that book, it sounds very interesting and it will give me something to do on the train trips back and forth most days.

I have also booked her in to get her hair cut by some ladies who do hairdressing on the wards on Wednesday. She seemed interested in that idea, and I hope it makes her feel a little better, as well as give her something different to look forward to.

 
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