My Dads Stoke, 5 months later, not sure where were headed..........

[bren1993]

Hi,

 

I feel the need for support, My Dad's Stroke is was so bad, I read some of the postings and only wish my Dad had some of the problems others discuss. My Dad is in a nursing home, he has really come a long way, but we have so much farther to go. Dad has no movement below the waist, ( unexplainable ). My Mom spends 5 to 6 hours a day with him. He has said a word or two, ( but still has trach) We are trying so hard to get doctors to remove trach, but in the nursing home, you can beg and plead and it takes a decade for anything to happen. They have one excuse after another, Lung Doctor, only makes once a month visit. He has never spoke for me, I have pleaded with him to talk but, he hasn't. I have no idea if he knows who we even are. His brain may connect from time to time, but he does not show a whole lot of communication skills. He can play catch with a ball, he can shake your hand, he is more alert by the day. He stays awake for longer periods of time, he watches everyone. He can move his own wheel chair in therapy. Therapy has him standing with assistance for short periods of time. Therapy works with him an couple hours a day. Will he ever come back, My Mom is strong and hopeful. Has anyone ever been this bad and came back? I feel the need for hope! Somedays I feel weak and this is one of them.

[dstraugh]

He can play catch with a ball, he can shake your hand, he is more alert by the day. He stays awake for longer periods of time, he watches everyone. He can move his own wheel chair in therapy. Therapy has him standing with assistance for short periods of time. Therapy works with him an couple hours a day.

 

 

My thoughts and prayers go out to all of you. It has only been 5 months. I quoted what you said your Dad can definitely do. That is a step in the right direction. Recovery is not instantaneous or generally miraculous from a stroke. It's a long long climb up the mountain. Your Dad is working on that climb and the support from you and your Mom is helping him get there.

 

Remember to take care of yourself as well during this journey. You will be of no good to your parents if you are not rested and healthy (mentally as well as physically) yourself.

 

Take care

[kanderson]

hi bren, glad you found this great website. as others have said it is only 5months since your dads stroke. please have patience, this is a long journey to recovery. the brain is amazing in what it can do and re-learn. persistance and hard work is necessary, anything your dad can do post stroke is a step forward, his family is very important to him now. so be strong and encouraging for him. i am sorry you are having to deal with this, but the stroke demon hits alot of people every year. come here often to vent or ask questions, recovery can be a challenging thing but it does happen, so hang in there and be positive. i hope things go well for your family and let us know how he is doing.

k.anderson

[rdittman]

I think you have posted some encouraging things about your dad. Is he better today than 5 months ago when the insult occurred? You bet he is.

 

I am one year in now, and though I still can't move my right side, I keep working toward it. Time will tell with your father, but it is still early in the recovery process for him. Continue to be his advocate, as you have been, and don't get discouraged. As you say, he is more alert now and doing more things. This is encouraging.

 

Bob

[TNstroke61306]

Hi Bren,

 

My husband, George, stroked June 13th and he was in the hospital, nursing home & rehab center until November 16th. He is still in the wheelchair but he is coming along one day at a time. It is a long slow process. Have faith it will get better. Like everyone else says please take care of yourself, your Mom too needs to take care of herself. George fatigues real easily, especially after he has rehab. He still takes daily naps sometimes more than one. He has aphasia and can communicate some and that is also getting better. He still is maximum assist but he is working on it and I can see progress. But again, it does take a long time. You are in my thoughts and prayers as is your Mom and Dad. Take care of yourself. If you want to talk please PM me and I will be glad to talk to you.

 

Wendie, Caregiver to George. :laughbounce:

[bren1993]

Thank you for your posts

 

Anyone have any ideas of what to do about the Trach

 

Dad still has Trach, (5 months) we have been unable to get Lung Dr to even come to see my dad. Its been two months, We have called Dr numerous times the girl in the office is great at telling you what you want to hear, but it never happens. Spoke 100's of times to Nurses, Social Workers, ect. They make promises, but nothing ever happens. I'm almost positive Dad hasn't needed the Trach for a long time, We want it removed, we want a swallow test. How or What should we do, when nothing seems to get done???

 

My Mom has been patient and didn't want to upset anyone, however she is almost ready to whatever it takes to get the lung Doctor in.

 

Are there other roads to take, The social worker at our Nursing home has not come thru for us.

 

Thanks for any advice,

 

Deb

[ddaul]

hi deb

 

ihad probloem you had so my speech tharepist got things going. really depends uf that person wants to help. i would bother my elected affcials or do what i had done call health dept. this will stir things up quick.

 

a more suttle approach is keep bugging until you see action. we tend to depend on words. truth is there people are very busy and will promise you the world and then forget you but your going to be that thorn that will not go away. the cure for that thorn is curing your dad

[Dickons]

Hi Deb,

 

I have always found that the best method for getting something done is as follows:

 

1. Document everything, date/time of call/who you spoke to etc.

 

2. Send a letter to the administrator of the nursing home asking for assistance, being polite, yet strong in words requesting assistance.

 

Remember you are looking for assistance from these people. You could consider adding a list of people who will receive copies of the letter beneath your signature. People you could consider sending copies to are your family doctor, the lung doctor, the person in charge of his therapy, and the social worker - whoever you feel could help.

 

Remember to keep copy of letter and date sent. If you can afford it - send the letter to the adminstrator certified. (you could send the letter to the lung doctor instead of the administrator - only you would know who it should be directed too).

 

3. Allow time for letters to be received/read and then go to the office of the person you chose to write to ask to speak with the person. Someone will talk to you or set up a meeting. It is easier to put someone off who is on the phone versus standing in front of them.

 

4. If you do not see results or at least a satisfactory answer you could consider one or both:

 

a) send a letter/drop by your state representative, include a copy of the letter sent in #2,

 

b) send a letter to the local media, most have someone assigned to a consumer concerns area. (if you do this you need to have allowed time for response/action and tread very carefully).

 

Again, be polite, outline your concerns, do not blame anyone, just that you and your family need help.

 

Above all, you need to ensure that the staff at the nursing home do not feel blamed because they are the ones that take care of your Dad. You can even praise their efforts on behalf of your Dad in the letter.

 

Kind regards,

Dickons

 

 

 

[lady k]

I understand your wanting your dad to be able to communicate with you I agree with all the previous answers , in the meantime try to gather information your dad would like to know and when tyou go in speak to him about those things maybe set up blinks or sticking oput his tongue if he doesn;t like sometging, work within what he can do to communicate with you, so when the day comes he has the oractice of paying attention and responding. sometimes the napping is giving the body the time and strength to heal so be glad for it. you are doing a awesome job of hanging in thrtr and not giving up. I am sure your dad is thankful for that. sometimes you just have to keep on plugging away at things until something happens. our prayers are with you.

[kkholt]

Hi,

 

You have received some good suggestions on how to get the nursing home or doctor to communicate with you on your Dad's trach. I would add that another resort is your State Department of Health and Social Services who licenses the facility. They certainly would be interested in the care your Dad is receiving at the facility.

 

Also, I would pass on how amazed I am at progress stroke survivors can make. My husband was right side paralyzed (totally) a year and a half ago, today he walks with a limp and has some use of his arm/hand. Remember any improvement is an improvement to build on.

 

Take care -

 

Karen

[jwatrous]

sorry you are feeling bad, but it is understandable -

A stroke is exhausting and will drain any left over energy your Dad has, and of course, being older, is not a plus -

To recover, your dad will never work as hard as he will now, and check with his doctor to see just how much you can expect. If he has had damage that will prevent him from walking, then you will know what to focus on

GOOD LUCK

June

[arogers]

Dear Deb,

 

I've read this thread and you have received some excellent advice. The thing I always caution is that our desire for our previous survivor is really strong. We must accept the changes in our loved one in order to help them get better. There should be a social worker at your dad's facility. I didn't notice when you last had a conference with her/him, but that person should be your advocate. It seems to me the "professional" has more clout than we do as family. I would also talk with your dad's primary caregiver at the facility. Again, professional to professional communication works best and I found it relatively easy to get to the primary caregiver by going through the nursing staff. Besides that, there should be no reason why you can't talk with the primary physician by making an appointment.

 

It's important to not be emotional about the situation - and that is difficult because this is such an emotional time. Clarity and documented information is mandatory when dealing with any of this. "Many times", "alot", "sometimes", "almost always", "almost never" - none of those terms will have any impact. "Daily", Month and date, even specific times - the more specific the information the better. As has been suggested, go up the chain of command. Realize you may not always be the friend to the employees at the faciity, but you will be the advocate your dad needs. You don't have to be nasty, but you do need to be persistent, and that isn't always comfortable. (This is for your Mom - being "nice" doesn't always bring about the results necessary to help your husband improve. These people aren't your "friends" they are your employees and are being paid for by your insurance.)

 

I'm not sure what kind of conferences you have had with the medical and rehab team concerning your dad's current condition, what was affected by the stroke, rehab plan. It's important to have that conference and to have periodic conferences - and to document it all. We can't adovcate for our loved one without having the facts as the medical community sees it. We don't get the answers unless we ask the questions.

 

As far as your dad's condition - he doesn't seem so "bad" to me. You see, it's all in where we are in this thing. He can use both arms, he is able to push himself around in rehab - that's great! The important thing for you to remember is that there is always somebody who has more limitations and more challenges than you and your family. Be grateful for the progress your dad makes. Gratitude will soon put you in a place you can't imagine today.

 

Warm wishes,

[kanderson]

hi deb, you also might try contacting the ombudsman in your city. we have one that would always get involved with situations like this with residents in nursing homes. thats what they are for, you could probably locate them, through the dept of health services. good luck and keep fighting for your dad.

k. anderson

[marlen]

DEB,

 

GOOD ADVICE OUT THERE. BUT LET'S LOOK AT IT REALISTICALLY. YOUR FATHER IS JUST 5 MONTHS OUT.

IT TAKES A FEW MONTHS JUST TO ABSORB WHAT HAPPENENED BEFORE A SURVIVOR CAN EVEN BEGIN TO REALIZE HIS/HER NEW FOCUS IS AIMED AT GETTING BETTER. SLOWLY THINGS WILL IMPROVE. IF YOU SEE HIM EVERYDAY, YOU MAY NOT SEE THAT ANY IMPROVEMENT IS BEING MADE. TRUST ME, IF YOUR DAD HAS THE LOVE, DESIRE, AND ENCOURAGEMENT OF EVERYONE CLOSE, HE WILL BE BETTER. DON'T WEAR YOURSELF OUT WITH WORRY. ANYBODY ON THIS NETWORK WILL TELL YOU I'M ONE OF THE MOST POSITIVE SURVIVORS OUT THERE. THREE YEARS POST STROKE, AND I'M STILL TRYING TO GET BETTER. I'LL PROBABLY NEVER GET TO 100%. I'M TOO STUPID TO QUIT TRYING.

 

HANG IN THERE. NEVER GIVE UP, AND GIVE HIM AN EXTRA HUG THE NEXT TIME YOU SEE HIM.

 

REGARDS,

 

MARTY :big_grin:

 

[LaurieS]

Hi Bren - I'm afraid I can't offer you any advice but I can let you know that you aren't alone. My father went in for an outpatient procedure on Feb 7 and some placque broke free and went into his brain causing a stroke in his brainstem and left side of his brain. He was perfectly fine on Feb 6 and on Feb 7 it was a totally different story. Since then, it has extended further into his brainstem, he has had another stroke in his vision center and has had a small bleed. He has been in Palliative Care - then discharged. He has had pnuemonia twice. We have been in and out of the hospital 3 times since February and are on our 3rd nursing home. My dad can only move his right side. He can't talk and cannot respond to any commands or questions.

 

I can sympathize with feeling down and like things are never going to get better. I feel that way frequently. Even though I see my Dad every day, I am beginning to miss him terribly. Not being able to communicate with someone is pure torture.

 

That being said, at the end of every day I have to tell myself that it's my job to support my dad no matter what and help him get to whatever point of recovery he can. He is my Dad and I love him and as long as he is still with us, I will do everything in my power to help him.

 

I know that this is probably the hardest thing you've ever been through but please hang in there and don't give up. You aren't alone!!!! Take each day at a time and celebrate the little wins that happen.