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MaryJo

Coming Home - Doctor Question

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Dan had a stroke 5/24/09. Left side paralyzed, speech is slurred but good, typical right brain stroke symptoms. Cranky, angry, impulsive, won't eat, total assist getting in and out of bed, wheelchair bound.

 

We had our second care conference at the SNF yesterday. There was a lot of talk around coming home, but no date mentioned. I'm meeting with the nurse practitioner this morning to discuss meds and am going to ask more specific questions related to coming home.

 

I've seen several posts referring to a "stroke doctor". What is a stroke doctor? A neurologist, or a doctor that specializes in stroke? How do I find a stroke doctor?

 

Suddenly "coming home" is becoming real and it scares the heck out of me. I woke up at 4am thinking about it and worrying that I can't do what's needed. I still work, but am thinking it might be cheaper if I quit work to take care of Dan.

 

Now I'm rambling...I tend to do that here. :)

 

Thanks! MaryJo

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Mary Jo,

 

"In my opinion" that is going to be a very hard job physically for you with all the assisting that has to be done. Loading and unloading the wheel chair then pushing it is a job all by itself. Now his attitude is going to be something else for you to deal with. I'm not sure you could hold a job and care for him full time. My wife could not and my attitude was not a problem. My wife quit for two years but she could have gone back in one year as I learned to walk and fix me food. I also learned to drive again with my medications.

 

Can't answer your stroke doctor question!

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Hi MaryJo,

 

Be sure you have everything lined up for what your hubby will need once released from the SNF. You will be the one totally responsible for his care if he cannot be independent.

 

As to your stroke doctor question, there are neurologists who specialize in stroke. There are also physiatrists - rehab doctors - who work to coordinate physical and occupational therapy for the survivor.

 

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May-Jo,

I'm in agreement with fking.

 

I DON'T want to discourage you in ANYWAY

but there is SOOO very much to consider in careing for a survivor.

 

It is not just the physical care like helping with wheel chairs, getting in and out of bed,car

and the bath tub, fixing food assisting with getting dressed/un dressed

making sure his meds are taken properly.

Then there is making sure he gets to all of his doctors appts as scheduled

 

In many ways it can be WORSE than taking care of a child.

 

My wife often tells people she has 7 children

that is our 6 + me :o

 

She doesn't say it as frequently any more because I'm

pretty well able to care for myself now and do what needs doing

still there are times I have the mentality of a child

at least according to her I do LOL.

 

Now,

I'm NOT saying you couldn't do all of the necessary things

to care for Dan I just think it important you are aware it is not going to be

and easy task by any means.

To care for a survivor can be a full time job in and of itself

add to that,

trying to work a job and you're going to run the risk of burning yourself out quite

quickly

and you'll run the risk of hypertension

from all of the stress.

The 1st couple of years will be the most difficult

for him and for you.

It is commendable that you are willing to care for Dan

but you SHOULD be prepared for the challenges that are ahead.

Best wishes to you both,

Outsider

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Mary Jo,

I am a little confused. I read your old posts. At one time you said that Dan was pretty good at bed transfers. Now you state that he needs total assist. What happened?

Coming home is very difficult. My husband, William, had his stroke on 12-13-08. It has been along 9 months. We left the hospital 2-17-09. Let me tell you I was ready. I was so tired of that hospital. I didn't care if we weren't ready. I just wanted to be at home.

But, yes. You really need to consider that it will be difficult. We had a weekend pass to test the waters. It was not easy. I only did that for one day of the weekend. You will need to learn how to do car transfers. Make sure that you ask PT and OT for practice sessions. I don't think that I know if you have medicare or regular insurance. You need to check into home health services or hire a caretaker.

I work full time and hire caretakers to stay with my husband while I am at work. I also have help from friends at church. I have 2 days of the week when friends will take William out for lunch and visit for a couple of hours. I use that time as me time. I usually go the gym or shop.

I have written some blogs on the first days home.

When we first came home...we had lots of doctors visits and PT and OT and Speech. IT seemed that I was always taking William someplace. Oh, yes , I tried accupuncture too. But, I have eliminated that. It did not help WIlliam much. Recently we have cut down on OT and PT. So now, I do the therapy myself. I take William to the pool every day. and of course do stretches at home.

PM me if you have any questions that I might answer for you.

Good luck.

It has gotten better with time. I have cut the caregivers down by 1/3 to 1/2 of when we started.

William still gets confused sometimes. But, he is braver and willing to be by himself some now.

Why today he even wanted to practice walking with me. That is a first. Usually it is me nagging him to take 3 steps. I have to assist.

 

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Thanks for the replies. Wow, now I think I'm more frightened than I was. I know it's not going to be easy. I've started talking with the discharge planner about home health care. I need to find out what's available and how much it will cost. I also want to look into adult day care. I think the cost of all of these will determine whether or not I quit work. I've also started talking to PT about having one day a week of his sessions with me doing bed transfers, car transfers, helping him dress, bathing, etc.

 

I am concerned about burn-out. We have no family in the same state so it will be 100% me, which is another reason I think I'm going to have to quit work. Private pay snf will eat up our savings pretty fast. I just have so many concerns and questions. I like the idea of a "practice" day or weekend. I'm anxious to get him home and I know he wants to come home.

 

MJ

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Mary Jo,

Check with you insurance. You might have some coverage for at home help with showering. That was the hardest thing. I would suggest getting help with that for the 1st few times. That is really the scarest. Unless you do the sponge bath thing. I did the sponge bath thing in the SNF unit. FInally one of the CNA's told me about the shower. They helped me in the shower and finally I was able to do the shower by myself. They were around because they had to be. But, I could manage...but just barely. It wasn't until a month after he was home that I could manage by myself. I found a great shower at the YMCA. It is a wheelchair accessable one. I have one at home. But, it has a little lip that his foot would have to go over. I had grab rails installed and a shower chair. But, I still did not feel very comfortable.

It is possible. It is scary ...but once you get home...it will take a few months before you feel really comfortable. Just remember to take a little me time. Maybe friends or church can help you out. Just a couple of hours a week is good.

Yes, I did not have them practice the transfers enough with me. Before I went home. That was a mistake.

 

Good luck,

Ruth

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Hi MaryJo,

 

Few insurances, unless you have one designed for long-term care will cover in home care for your husband. Been there, done that!! However, I believe he will be eligible for some PT/OT at home and when that is in place a home health aid will be able to come in to help with his personal needs - at least this is what I found with Bill. These aren't all day care providers though. I found the in-home aids cost about $17/hr. I guess you'll have to do the math.

 

The thing to remember is that you'll be taking over the caregiving when you get home from work. I know leaving a job is a difficult decision. Do you have any family leave time availale to test the waters for a month or two?

 

I think fear is a pretty common emotion to feel right now. I think "panick" kicked in for me when I was told it was time for Bill to be discharged. It soon dissipated though when I took a deep breath and remembered my resolve. The physical issues you are dealing with are extensive but the emotional issues would be more serious for me. Be sure to meet with a neurologist (preferrably one who specializes in stroke) before he is discharged home. There may be some meds available. Beyond that you may want a psychiatric referral so he can be evaluated for some therapy.

 

If he isn't able to transfer safely, demand that he get addtional PT/OT in order to gain strength in order to do so. That being said, if they think he has plateaued in his abilities, you MUST get training so you can help him move safely.

 

Burn out is a very real possibility so be sure to get help so you can get out to clear your mind. Even grocery shopping becomes a pleasure when you aren't worrying about his safety.

 

Good luck and do keep us posted!

 

Warmly,

 

Ann

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Hi Again,

 

By the way, have you checked on his VA benefits? That would be the absolute best option - especially if you have a VA hospital close to you.

 

Ann

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I talked to PT yesterday and they're making a home visit next week to evaluate our house. Dan will come with them and they'll look around and make suggestions. I'm a little anxious. Insurance hasn't cut us yet, but he's been in rehab for 71 days and my insurance covers up to 90 days. So, he'll be home in a few weeks. I'll have to go private pay for a while if the house isn't ready. I decided to take the whole day off work and I can make several phone calls that need to be made: insurance coverage, can he pre-qualify for medicare because of the disability, SSDI, VA benefits, trying to find a "stroke" doctor. I'm still not sure what a stroke doctor is. Is it a neurologist?

 

I've started looking into home health care, someone to stay with Dan during the day, skilled nursing to come in weekly, and PT, OT, and ST. I've decided that when he comes home I'm taking a minimum of a week off work, then maybe I can gauge whether or not I think I can continue working. I've used all of my sick and vacation time, so any time off work will be without pay. That's ok...Dan has always been my priority. All of our family is out of state so I asked my brother in law if he'd help out that first week and he said he would. Both of our families keep asking what they can do to help and I've told them since the beginning that I'll be asking for help when it's closer to Dan coming home.

 

I talked to PT yesterday and was told that he will probably never walk or use his left arm. I will not give up or give in and I will continue to do everything in my power to help him walk again. From what I've read on this board I know that it's possible. My concern is that Dan will give up. Right now he is so very, very tired. He's been in rehab for 71 days non stop.

 

Mary Jo

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Hi MaryJo,

 

A "stroke doctor" is a Neurologist who specializes in strokes. In our area when someone is admitted to the hospital with a stroke they are put under the care of a strok specialist. Our Neurolgist practice has one doctor who does this specialty....he is run ragged! He has a physician's assistant who follows his survivors after one year, unless there is some emergency. In case of any emergency he steps in.

 

From past experience, Dan is set for all the normal in-home assistance Medicare will pay for. That will help you a lot, but since someone needs to be there when all those folks come in, either you or another caregiver will need to be with him. I was told the intent of the in home rehab is to teach the caregiver to carry on, not to serve as a caregiver.

 

Soooo you're on your way. Make those calls. I still say, if he qualifies for VA and it would be possible, they have great rehab - even if it's in-house, it's worth it for him!

 

Warmly,

 

Ann

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I talked to PT yesterday and they're making a home visit next week to evaluate our house. Dan will come with them and they'll look around and make suggestions. I'm a little anxious. Insurance hasn't cut us yet, but he's been in rehab for 71 days and my insurance covers up to 90 days. So, he'll be home in a few weeks. I'll have to go private pay for a while if the house isn't ready. I decided to take the whole day off work and I can make several phone calls that need to be made: insurance coverage, can he pre-qualify for medicare because of the disability, SSDI, VA benefits, trying to find a "stroke" doctor. I'm still not sure what a stroke doctor is. Is it a neurologist?

"Stroke doctor" is usually a neuro that is a specialist in stroke recovery.

At least that is what I was told by my wife AKA caretaker

 

 

 

I talked to PT yesterday and was told that he will probably never walk or use his left arm. I will not give up or give in and I will continue to do everything in my power to help him walk again. From what I've read on this board I know that it's possible. My concern is that Dan will give up. Right now he is so very, very tired. He's been in rehab for 71 days non stop.

 

Mary Jo

Their saying that he will "probably never walk or use his left arm"

tells me there is a good chance that he will.

Now I NEVER preach or offer false hope to anyone

because every stroke and every survivor are different scenarios.

What was in my case my not be in someone elses.

Dan just may give up even if only for a moment it happens more often than not

but you should be preppared for how to deal with it when the time comes

so that you are not blind sided and over whelmed

Question:

Does Dan have ANY movement at all in his left arm and leg?

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Dan just may give up even if only for a moment it happens more often than not

but you should be preppared for how to deal with it when the time comes

so that you are not blind sided and over whelmed

 

Question:

Does Dan have ANY movement at all in his left arm and leg?

 

 

Outsider, He has no movement at all in his left arm or leg. He can't stand on his own, his left knee buckles. In PT they have him stand between the parallel bars using his right arm and leg, with the therapist supporting him on his left side with his left knee supported by the therapist. Then they get him to rock back and forth putting pressure onto the left arm and leg. He can do this for maybe 10 seconds at a time.

 

I'm concerned that he's already starting to give up. He's so tired. He's out of bed in the wheelchair for 5 minutes and already saying he wants to go back to bed. I'm very concerned about this when he comes home and I'm not quite sure how to handle it. It's very hard to ignore. At the snf I can leave and let someones deal with it; at home I can't do that.

 

MJ

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it is very time consuming for instance is he able to bath himself ? or dress himself?because depending on how well he is doing will depend on how munch your husband car will needif he is on medication you will be responsible for insuring that he gets and takes his medication you will probably be driving alot, it is a fair bit of work to be a caregiverand

 

Lenny, He needs help bathing and dressing himself. OT is working on both of these with him. I know it will be time consuming, it is also very scary that he'll be 100% dependent upon me. I'll have home health care come in to help out. Not only has he lost his independence, it feels as if I'll be losing mine. I won't be able to jump in the car and run down to the store because I forgot to buy milk.

 

I've discovered the hard way that stroke is an incredibly awful thing for everyone involved. Not just the survivor, but also the entire family.

 

MJ

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Mary Jo,

 

I'm glad to see you''re getting such good advice from people who have been there. :chat: My daughter Rachel had her stroke 31/2 years ago. She can't move her right arm or right foot. She wears an afo brace so she can walk with a quad cane. She is mostly in her wheelchair.

 

When we left the hospital after 2 months, Rachel was evaluated with OT and PT. They tell you what is needed at home. Rachel needed a wheelchair, quad cane, afo brace, shower chair, and a bathtub transfer chair. She still needs all of the above.

 

I took lots of notes and carried a notebook as to not forget anything. I wrote doctors names, addresses, medications, appointments...you name it. :juggle:

 

Rachel sees a physiatrist, nuerologist, OT and PT, cardiologist, and her primary care physician. The cardiologist of course is for her heart condition.

 

My husband and I are Rachels caretakers. I work a full time job and John stays with Rachel during that time. I am home by 3:00pm. I would need to hire someone if John weren't here. He's getting older too(61). It's getting hard on him and I may need to get someone for a few hours a week. Our daughter Nikki gives us a break sonetimes, but she is a full time college student working a part time job.

 

:cheer: I think the idea of a trial run is a great idea. Also, the therapists coming to your house is good. :cheer:

 

I wish you all the best. :hug:

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Outsider, He has no movement at all in his left arm or leg. He can't stand on his own, his left knee buckles. In PT they have him stand between the parallel bars using his right arm and leg, with the therapist supporting him on his left side with his left knee supported by the therapist. Then they get him to rock back and forth putting pressure onto the left arm and leg. He can do this for maybe 10 seconds at a time.

 

I'm concerned that he's already starting to give up. He's so tired. He's out of bed in the wheelchair for 5 minutes and already saying he wants to go back to bed. I'm very concerned about this when he comes home and I'm not quite sure how to handle it. It's very hard to ignore. At the snf I can leave and let someones deal with it; at home I can't do that.

 

MJ

Oh dear,

He got hit harder than I did.

I was at least able to stand on my own at 1st

so I really don't have anything to advise you on.

 

Other than if his therapist can get movement back

in his arm and get that leg strong enough to stand on he CAN continue to get better

but they need to get him to that point BEFORE sending him home.

There is NO doubt you're BOTH going to face challenges once he comes home

and you need to face them TOGETHER.

 

As for his sitting in the wheel chair?

I was allowed to leave the rehab center on a day pass so that I could go see

our churches youth pastor 1 last time before he left to move to Virginia

The only condition was I HAD to remain in my chair while away from the hospital.

Those things are NOT as comfortable as they might appear.

Everyday since then I've thanked God that I was not sentenced to a life in a wheelchair!

 

Life post stroke is a roller coaster with seemingly constant ups and downs.

When he is released to go home they will probably or at least SHOULD give you materials showing you how to continue exercising his muscles at home.

It is VITAL that you keep up with these exersises

otherwise his muscles can atrophe and trust me that is

something you DO NOT want to happen

so if he gives you grief about it and he probably will

you'll need to be able to stand firm and make him comply.

 

Resist the urge to belittle him or treat him like a child

but be firm.

He needs you now more than even he will understand

and in the end he WILL thank you for standing by his side

through the Hell he now walks through.

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Mary Jo,

Great your are ready to come home.!! I know that you are sick of the SNF unit. I was so sick of the hospital. Yes, make all the arrangements. Make all of your calls.

Look into the VA. They actualy do have alot of help for you from what I have heard. But, phone calls are time consuming.

You will still be able to run to the store. Believe it or not.!! He will probably need alot of sleep. I slip out when William is sleeping. It works. I tell him that I am leaving and he says OK. He doesn't really want to come with me. I leave a cell phone with him and I take the cell phone with me.

William came home and could not stand by himself. He has gained alot of strength since he came home. I tell him that if he needs to sleep. Take a rest..take a nap. He is napping as we speak. I took him to the pool this AM for our 30 min. Walk. He comes home and has breakfast then goes to his recliner and takes a nap. I could go off and swim myself. But, I feel like talking to you. I fortunately have the day off today.

William's left leg kept buckling when he tried to stand and walk. But, it has gotten better. I thought that we would need a brace to keep the knee straight, but it came about by itself.

I hate to hear that the MD gave you that prognosis. From this site and talking with other survivors I know that with time. Strength and neurons come back. My hope is that William will be able to walk with a cane in time. The PT said that he has the capability to walk. It is up to us to keep working on that until he can. I have him walk 4-5 steps in the house. I support his left side and he uses the hemi walker or quad can.

It seems that you are not every ready to go home. BUt, home is the best place to be.

Yes ,, it is scary. But, so much better.

RUth

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Guest faithycan

MaryJo,

 

My husband Tom had the same kind of stroke as yours. It is three years later and he has been in long term care since March. He will never walk again, or use his left arm. Tom is 59. I took care of him (as many here know) until March when he had pneumonia. He has gotten worse. I worked full time and he was able to stay at home, but I worried about him all day. He slept in a chair (electric recliner) and couldn't sleep in bed. He also had many mini strokes and seizures. I am hoping some day to buy a bigger house and take him home, but that is if and when the lawsuit comes through. He had a massive stroke because of a kidney stone. He got septic and that cause ultimately the stroke. He was so healthy and worked out. And the nursing home takes all of his income and leaves me with mine. When he was home we had both incomes. So maybe you should look into that. If I had it to do over again, I would quit my job and stay home with him. He actually makes more than me. Only drawback, insurance and medicaid will only cover an aide if there is a nurse involved. Believe me when I tell you, you will be taking a huge task on. Good Luck and let me know.

 

Faith

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MaryJo,

This won't answer your doctor question, but will help answer some questions and help prep for when he does come home.

Stroke Caregivers Handbook

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Hi Mary Jo,

 

All the advice people have given you is great! I'm so gald your husband is comming home soon. Make sure you give your self time to enjoy your day too. Youi have a lot on your plate but I wish you well. I know that comming here has changed your life a lot. I'm gald you found us. I wish you well and that you'll keep us posted on your husbands progress!

 

 

Bruce Schwentker

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