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mekelly

question about care

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Hello,

 

I am a brand new member. My mom (aged 65) had a stroke during surgery on April 6, 2007. She was completely paralyzed on her left side and had some difficulty with reading, math and breath volume (speaking loud enough to be heard). The complicating factor is that she is a lung cancer survivor and as a result of her cancer had almost no use of her right arm-- leaving her with no usable arms or hands. After three weeks in Rehab they discharged her saying she was medically stable and was not making enough progress to stay in acute care. She still needed 24 hour care because she could not sit up or feed herself or really do anything without assistance. Because of a lack of beds at the nursing home/rehab facility she wanted she went to a nursing home that is okay but not great.

 

It has been another two weeks. Her reading and math skills are better, and she has regained some voice colume but is still pretty quiet. She has regained grip strength and some use of her left forearm. She has also moved her leg a few times but is having real problems with tone. She is getting 2-3 hours of therapy 5 times a week and my sisters and I are doing exercises with her on the weekends. We keep telling her how good she is doing.

 

However, this place is pretty negative about her chances of recovery. They keep saying that we are being unrealistic at the idea that she might not need 24 hour permanent care. We have been trying to get her into another rehab facility/nursing home but today we found out that they will not take her because based on her progress so far they think that she will never be able to go home- even with help from us.

 

So- how do we tell her this? Also, are we being unrealistic in thinking that she could go home with some assistance / that she might not need permanent full time care?

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Hi there and welcome to the site. Sorry to meet you under such circumstances but so glad you found us. It is very early in your Mom's recovery. I bet her negativity stems from the frustration she is feeling - this is normal. Remember, all strokes are different and therefore recovery is also different. There is no set timeline for a person's recovery. What your Mom does need is you and your sisters' support and encouragement as she faces the difficult road ahead of her.

 

Please keep us posted on how she is doing. We're here for support and encouragement.

 

God Bless

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Hi Welcome to the site. Sorry your family is getting negative reports.

 

As far as I know, noone can really tell how much you will get back or when. It does take great effort and patience. Repeating the movements over and over. I learned to walk with a walker, then a cane. then un aided.. My walking improved a great deal in the 2nd and 3 rd year. I just hit my 4 yrs. I only had about 2 months or a little more of PT, them my Insurance ran out. so i practiced at home.

 

It does sound like your mom will need help for quite awhile.. until she gets the use of her arm to feed or take care of herself.

 

Keep checking around for a different place and keep up the exercises and cheerleading.

 

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welcome :welcome: to our cyberworld, I'm sorry you are having to put up with their negativity, what does her neuro say and what does the physio say. since it has only been a little over a month since the stroke I would think it is just to early to yell, as much as you would like to get her settled in a more positive environment for now I would keep on with what you doing and since she has been making progress keep encouraging her to work hard, she has a lot to overcome but she has fought cancer so I would say she is a fighter and will end up gaining a lot more than some of them think, she needs time not only to work at therapy but for the brain to remap, so repetition is her friend for retraining the muscles, keep her joints and muscles moving as much as possible. don't give up, some people plateau for a while then suddenly start making progress. you might find out what kind of progress these places want to see before they will take her that way you can set dome goals. come back often at keep us informed one of us will probably have had something similar and can help or just provide moral support.

IPB Image

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hi there, sorry to hear about your mom. don't let these people discourage you about her progress. she can get better, it takes time. never give up hope. if medicare is paying for the rehab.nursing facilities they have strict guidelines that have to be met. if she is not able to do her adl's(activities of daily living), she needs more therapy and she can improve with encouragement from her family and hard work. they should not send her home if she isn't able to do her adl's for which she might need assistance. alot depends on what she is able to get back. she probably would qualify for home health with medicare. so please keep encouraging her and i hope she does improve. this is a long journey to recovery.

god bless and good luck,

kanderson

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:bouncing_off_wall: :hiya: :welcome: Welcome! Sorry to hear about you Mother. Recovery is a long process and can be so frustrating at times. You and your sisters' need to be her strength. Don't let the negativity keep you guys down. Do all you can to support and encourage your Mom. Only time will tell and there is hard work ahead for your Mom. It is still early in her recovery and and further down the road there will be a better assessment on her progress and more of an idea if she will need permanent assistance. Try to stay strong for your Mom and keep encouraging her so she can keep her will, determination and spirits up. Everybody had great advice and I would suggest reading blogs by caregivers, it might give you some insight. I wish the best for your Mom and family. Please let us know how things are going. Take Care!

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Guest veggie.vampire

I agree its early days. Not unrealistic to hope; first few weeks doctors said I'd either die or never move more than eyes, wrong! Then rehab really practically stopped saying I'd never stand; 2 years after my stroke I can't walk but CAN stand with an aide so pray for the miracle that might come. Ignore them if they try the "6 months and recovery stops" thing, its rot, I'm still improving. Sometimes professionals give a bleak view or are simply wrong, go with your instincts. I also strongly agree with the post that mentions positivity. Good luck on this hard journey.

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Hi - and Welcome!

 

I agree with the others who have posted - six weeks is WAY to early to form a concrete prognosis about your mom's recovery.

 

A couple of things are true:

 

1. Right now she isn't able to care for herself.

 

2. She has a long road of recovery ahead.

 

3. There will be good days, bad days and everything in between.

 

It is great that she is getting five days of rehab where she is now. It is also wonderful that you are working with her on the week-ends. You are to be commended and this hard work will pay off. You all need to try to remember that if she has a bad day the next will be better. If she is exhausted that is normal.

 

I do know that attitude is just as important, and maybe more so, than the medical tests and the results all of the tests may show. Your mom may not be able to be alone again, but that doesn't mean she can't recover more than what she has now. It also doesn't mean she can't have a rewarding life. The important thing to remember is that she is and will be valued more by her determination than by her disabilities in the future. Recovery can't be measured in days or weeks. We now measure my husband's recovery in months and years.

 

Good luck to you all - and keep coming back. You will learn so much here and we will all celebrate with you in the months to come. Believe me, you will have many, many questions!!

 

Warmly,

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:welcome: to the Stroke Network,

 

Let me start by saying how sorry I am to hear about your mother. Stroke for anyone is never very easy.

 

My husband and I are caretakers to our daughter Rachel, who had a stroke last year at 22. It was massive and we were told she wouldn't make it through the night. Well here we are 1 year and 3 months later. I won't say it's been easy. It's been a long road, but like you we never gave up on the fact that people can recover, maybe not 100%, but to some degree.

 

:hug: Every person is oh so different. There is no time limit on any aspect of the stroke survivor. I pray that your mother can move forward and that you and your sister will be there for her. Good Luck. Ask lots of questions and keep a notebook. That helped us so much. :hug:

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Thanks for all of the advice. Over the weekend we got copies of all of the nursing and treatment notes and early this morning we appealed the decision at the nursing facility that we wanted. Based on everything we said they agreed to take her - not as short term rehab but as a longer term patient. :Clap-Hands: Not perfect but so much better than where she is now. They said that we were able to show that she was progressing and that while she doesn't fit the criteria for short term rehab- we convinced them that there is at least a possibility that she will be able to go home with assistance.

 

I guess it is what everyone on the site keeps saying- sometimes you need to do your homewoek and push the "professionals".

 

We are trying to keep positive. I don't know if she will ever be able to live completely independantly again- but we hope that she can go home with home care and help from us.

 

Thanks again.

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Welcome Mekelly,

 

It's that hope that we all look forward to day by day without giving up even some of the doctors give up. There is always hope and success by the grace of God.

 

After all I have been faced with as a survivor I am totally inspired by hope that one day God wants me to walk again on my own.

 

I'll be 66 in July and recovering for 3 years now. It takes time and the desire to be independent. You are not being unrealistic at all, I came home in a wheel chair thinking that was it for me.

 

I learned to walk, drive again, use a scooter and earn a living. I can finally do some things for my self that I couldn't 3 years ago.

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Guest fiduk

I am so sorry you had to hear all that negativity. I also had to hear alot of negativity from many of the doctors and professionals. I think they do this to toughen us up and make us strong because it is most certainly a long road of healing to travel. It was a wonderful feeling for us as she would do the things they said she would never do and surpass their original expectations. Three years later and she is doing wonderful.

 

I hope things continue to go if the right direction. Hand in there.

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