Mother's Stroke - No Progress Yet

[newcarer]

My mother (75) had major stroke 4 weeks ago, right side paralysed, can't swallow, can only say a few slurred words, usually unintelligible. She does nod to questions and has strong grip in her left hand but is either sleepy or agitated and kicking off her sheets. Stomach feeding tube was fitted last week. The doctors seem to have given up on her already as there has been no real progress yet.  Is lack of progress a sign that there will be no recovery at all? If they say she needs to go to a nursing home, can I be sure she will still be assessed regularly in the same way that a hospital does (or is supposed to?)

[Ben Zeenees]

Your story is almost the same as mine. My mother is 85 and had her stroke 6 weeks ago. She also developed painful seizures affecting her left side and her awareness. The doctors originally said she wouldn't live 48hrs. After 5 weeks she developed pneumonia due to aspirating her food and we were advised to withdraw treatment and keep her comfortable while waiting for the end. But she recovered from the pneumonia. We are now trying to get an assessment of the seizures and a treatment program. Its likely to be a long road. But we have heard many good stories of partial recovery.
Make sure you look after yourself as well. I'm lucky, I have 4 brothers and sisters to share the load.

[ebyokuri]

Almost 3 years ago, my mum had a major stroke as a result of surgery to clip an aneurism. The stroke was so massive that doctors had to remove the damaged part of her brain (on the left) for her to survive. she was in a coma in the icu for about a week, then she was moved to a sub acute unit in a different hospital.

It has been like i said, almost 3 years now (she defied the doctors 3-5 day survival), and her recovery has been minimal. She has paralyis on her right side, she is on a vent and a feeding tube (g-tube). She talks very rarely and struggles at that. Lately, for the past month, she has been breathing on cpap for up to 8 hours a day but for some unknown reason, the doctor will not try her on t-mist so she can get off the vent.

I can see my mums personality and that she wants to talk to us (her children) but she can't. I've noticed her spirits going down lately and a family member is there daily to make sure things are going okay. I'm beginning to wonder whether she is going to recover more?

[tommynyc]

newcareer,

just like your mom, my dad (66) had a stroke in may of 2004 leaving him completely paralyzed on his right side with trouble swallowing (dysphaGia) and slurred speech (dysphaSia). 1 year and 1 month later he is able to walk independently with the aid of a cane and talk at 90% of what he used to. and he is STILL making progress. its going to be slow. this is something you're going to have to get used to. and this is something he was able to accomplish through the help of an entire staff of medical professionals specializing in strokes including: neurologists, physical therapists, occupational therapists, and speech therapists. as cariliz mentioned there is nothing more important at this stage than getting your mom proper professional care. her chance at progress is at its peak within the first year so its critical you find her proper help as soon as possible.

as for nursing homes, i would think this would be premature given the short time that has passed. nursing homes normally provide limited support in terms of rehabilitation. they are usually 'sub-acute' facilities meaning they will probably provide less than 1 hour of therapy a day. my dad was placed in a sub acute/nursing facility only AFTER a 2-3 month period of being in an acute rehab center which provided 4 hours of therapy a day. i dont know what kind of physical condition your mom was in prior to the stroke nor am i a doctor so i cant tell you whats right for her but normally if the doctor feels the patient is healthy enough and has the potential to make progress the patient is admitted to an acute rehab center first for more intensive rehabilitation. once the doctors feel the patient has achieved a certain level of progress they are then sent to a nursing home/ sub-acute facility to continue less intensive therapy or rest. when and if you do reach this point i would strongly suggest you visit several locations beforehand. i have my fair share of horror stories and you really should know what rehab facilities they have to offer, the amount of staff available per floor, the activities, overall atmosphere, cleanliness, etc. before deciding on one.

i understand you want to do everything in your power to help in any way that you can and your desire to help your mom is commendable. unfortunately, it's a tiny fraction of what these medical professionals have learned to do through many years of school, research and first hand experience. its THAT important that you find your mom the right people to provide the right care. its not going to be an easy process and its not going to be quick but this does not mean she's not going to make progress. dont ever lose hope. God bless.

-tommy kim

PS When my dad wasnt busy in therapy sessions I read books and newspapers to him, brought a radio for him to listen to, did easy exercises and light massaging on BOTH his good and bad side, fresh cut flowers to freshen up the place. I think all of these are good to keep the mind going. She may be depressed and agitated but this is typical of a stroke and probably not because of what you're reading or saying to her.

[newcarer]

I am now managing to get some communication going, with my mother giving me hand gestures but it's VERY slow.  I know she can hear me but when she is sleepy I just sit there and talk.  Trouble is, I'm not sure what to talk about.  If I talk about the garden, would that just depress her because she can't be there to see it.  If I talk about what I've done that day, would that depress her because she's stuck in that hospital bed and can't do the things I can do?  Should I try giving her music to listen to?  Surely just lying in a bed for weeks with little stimulation must be intolerable if your brain is still active but you can't communicate?

[mejoje]

My Dad had a stroke 1/06/04 on the same side as your mom's but he was able to swallow and my not have been "that bad". He was in ICU for 8 days then rehab for about 6 weeks, he is now able to walk, does get tired and weak, but we are thankful he has come so far. You need to never give up hope for recovery and yes you will get frustrated (she will flip out when she is not able to get what she wants out and be very frustrated herself) and sad for the mom you have lost. Sometimes it gets very hard when my Dad said "I Love You" for the first time with me (or my Mom) not prompting him I cried, when they called me on my Birthday and I heard him sing to me I still cry thinking of it, and this is the man that is my hero my superman, and now I get excited when he calls my name. Just remember you guys are going through this together and you are going through it too do not be hard on yourself. With Dad the stopped going to Speech Therapy cause he said it wasn't doing anything but we kept it uo at home and would have him repeat words and got those learning books from the grocery stores and had him say what was in the pictures, no matter what anyone says do not give up. If you have to put her somewhere (I am no expert on this by any means) but check out the places go and visit them try to do unplanned visits see how they treat that residents try to talk with anyone that lives there ( if they are able to talk and are not confussed) or their families. Also, go with questions what kind of rehab do they provide what are the schedules there does and MD come to visit and how often anything like that you can think of and don't let them try to side step any question. Also, if the hospital says you need to go to a specific place (insurance wise) I know here in PA that is not the case though they try to use it, and refuse for her to go there and find somewhere else. I am so sorry to hear of your families misfortune and you all will be in my prayers.

[newcarer]

Thank you for your thoughts.  She is already on a ward where they deal with stroke patients, and the physiotherapists have got her into a chair for a couple of hours most days. I am slightly encouraged by getting some audible answers from her yesterday, she said she was tired and asked for a drink.  But then she got frustrated that I couldn't understand her next sentence and I think she told me to Shut Up.  I've been reading lots of encouraging stories on the internet, but it's hard to not be disappointed each day.  Is your mom in a nursing home that treats stroke patients?  How long did she stay in the hospital?

[cariliz]

I cannot stress enough how important it is to get with professional medical people who are familiar with stroke, and with rehab, etc. This is so very early on after your mom's stroke. WAY too early to give up on her. She has many, many months ahead of her now where she can and will make improvements. They come very, very slowly. No one who is at all familiar with this type of stroke would be giving up on her yet. Get with someone who is ready to fight with you for your mom!

Also important is to be sure you have a lot of support for you, as well. You are going through hell right now, and all the help and support you can get the better. Take care of yourself, too. It is very important. Accept help when people offer. If they say to let them know what they can do, take them up on it!

God bless you,  Carrie

[cariliz]

My heart goes out to you! My Mom stroked 7 months ago--severe left sided brain damage, along with some right and frontal. Paralyzed right side, cannot speak, cannot swallow. She has a peg feeding tube as well. Her doctors were amazed she came through it, but she has defied all of them.

Our mom is in a rural part of Montana. I had an awful time finding anyone who was familiar with and experienced with someone in her severe condition. The first thing I would say to you is, if you are in an area with limited resources, MOVE her to an area where there are! Your mom can make many improvements for up to eight months, and even after that. It's so important to get her evaluated for speech, physical, and swallowing therapy ASAP! She desperately will need them, and very important to have a swallowing evaluation by a qualified swallow person (NOT bedside!). A GOOD speech therapist should evaluate her to see if there is any way to establish a way to communicate with her. Even when they nod to questions, they don't always know if they are answering yes or no. Their communication center is all messed up. Make her a communication board with pictures of every day items/needs, that she can point to. I have one that I could send to you to modify for your needs and print out. Physical therapy is also important. The sooner they can get her moving, working the affected limbs, the better.

I wish there was a way I could tell you how to contact me because I have so much I could share with you. I had to fight doctors, nurses, etc to get care for Mom. It is against the rules of this forum to post personal information.

Go to strokenet.org. Read the posts in the stroke caregivers and also the stroke survivors forum. If you can think of a way I could contact you, I would be happy to tell you as much as I can about what happened with our mom.  

Hope I've helped. God bless...your mom and you are in my prayers.

Carrie