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MaryJo

Coming Home 10/26

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Dan had his stroke 5/24. He's been in rehab since 7/2, first hospital inpatient and then snf. He's left hemiplegic and he's got left neglect. He's gotten so strong and I'm so very proud of him! He's doing great at stand & pivot. He really stands on his own now. I just pivot his hips, point his rear end and tell him when to sit. I've started helping him in the bathroom and changing him when I'm at the snf. I found out yesterday that insurance dropped him the previous day...so much for good customer service!! :wacko: I'm definitely appealing the decision.

 

He's coming home in 11 days! I'm excited, scared, anxious, nervous, scared, excited, and scared. We've got a two story house so I'm turning the living room into a bedroom. I've moved furniture around all over the house to make room. I'm getting a chair height toilet and a grab bar installed in the half bathroom on Monday. The ramp is going in the following Saturday. I've purchased briefs, wipes, body wash, two sets of sheets, extra wash cloths, and a baby monitor. I've been working with a very helpful lady from a local medical supply company. They'll be ordering his wheelchair and hospital bed a couple of days prior to his discharge. I'm also getting a bedside commode, bedpan, urinal, table thingy on wheels for meals etc. I'm so concerned that I'm going to forget something. I know it won't be the end of the world but I want Dan to feel as comfortable as I can when he comes home. Our families are all out of state but I've asked his brother to help out the first week; if nothing else, for moral support and for someone to be here if I have to run out because I forgot something.

 

I know he's anxious too. The therapists have told me that he's talked about it during his PT and ST sessions. He says he knows I'm worried. Guess I haven't done as good a job as I thought at hiding my anxiety! His mood had been so much better but this last week he's been really crabby. I'm chalking it up to anxiety about coming home.

 

I still work and had originally thought I'd take a week or two off. I've decided now that I'm taking a minimum of a month. I can't get him home and then turn him over to home health aides. We need to get into a routine before I'll be comfortable leaving like that. I'm not sure I'll even go back to work. Home health aides will cost about what I make an hour. So, I'll just have to see how it goes.

 

Well, I've certainly been chatty. Any suggestions from you survivors and caretakers on things I should get or do before he comes home? How about after he comes home? I pray daily for patience and courage to do whatever I need to do to help Dan.

 

MJ

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Just sent you a pm. My wife and I went through all this over 5 years ago. It's not going to be easy but it can be done. You may have to be off work longer than a month. The rest of my experience is in the message to you!

 

Take care, we are here for you!

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MJ,

It sounds good. He is getting stronger. Yes! It sounds like you have pretty much everythng. Let me list what I had.

1. Wheelchair that is driven by one arm. ( can't remember the name of the special wheel chair) But, ask your supplier.

2. Get the brake extenders for the wheelchair. They really aid in setting the brakes. Again the supplier will give them with the wheelchair. You may have to ask them for the extentions.

3. Plastic gloves for the caretakers to use and for you to use.

4. Hand sanitizer.

5. Swivel chair thing to place on the car seat. It helps the patient to swivel into the car. I use it alot.

6. Givmohr sling for the arm. So that you don't get alot of pain and subluxation. Givemohr is a good brand.

7. Make sure that the doorways are wide enough for the wheelchair.

8. A friend gave me big bibs (adult) easy to make .

9. A belt. Like the kind the PT use in the hospital. I decorated ours with ribbon.

10. I use water shoes in the shower to prevent slipage.

11. Shower chair.

12. potty chair

13. Remember to get prescriptions for all meds. Even those used as needed (prn) eg. vomiting, sleeping, pain, dizziness. They seem to remember the regular ones.

Ruth

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MaryJo,

 

Our Caregiver handbook was written by some of our most experienced caregivers and is filled with a wealth of information I'm sure you will find invaluable. By clicking the link you will be able to download it.

 

Please keep us posted on how you and Dan are doing.

 

Maria :friends:

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Hi Mary-Jo, I have nothing to add to your list. It looks pretty complete to me, down to the wipes. I wanted to wish you both the best. At the very least it will be better that you dont need to run to SNF every day. I am sure that everything will be great. You are so well prepared. Again all the best and good luck. Dont forget to make Mary-Jo time once in a while. If you get tired or sick you wont be any good to Dan. Take care,

 

mc

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MJ that's terrific news that Dan is coming home. The list that Ruth posted looks great. Just remember to take it one day at a time. Once you two have a routine established that will help immensely. Cargiving is not easy' I hope you take care of yourself as well as Dan. Caregivers do experience burn out.

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All the best to the both of you. "There's no place like home"..... That is the best medicine for the both of you. Please keep us posted on how things are going. Keeping you both in my thoughts and prayers. Congrats....

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MJ,

 

It's very normal to feel nervous and excited all at the same time. When we brought our daughter home after her stroke 3 1/2 years ago, I felt the same way. I did keep a notebook with phone numbers of doctors, therapists, pharmacists, appointents, medications, etc... It helped a lot. The therapists worked with us to get set up at home. I asked a ton of questions.

 

You will feel overwhelmed in the beginning. It takes a while to get in a good routine. I'm praying for your strength and sanity during this time. Take it slow. You will probably both need lots of rest.

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Thanks to all of you for your comments, suggesitons, and good thoughts.

 

Fred, I just sent you a pm...thank you!!

 

Ruth, You listed a lot of good things. I had no idea you could get brake extenders. I'll definitely ask about them. I had seen the Givmohr sling and wondered if it worked. Dan already has subluxation and has a sling the PT ordered for him but he doesn't like it because it's too tight across his chest. Another thing, where can I get water shoes? I've searched for them and not had any luck.

 

Everyone keeps telling me to take care of myself. I'm trying but I know I'm not always successful. I am getting better about it and it will be much easier when he's at home because I'm not running back and forth to the snf. It seems I do laundry every night. That may not change but at least I won't have to pack it into the car and worry that I've forgotten something. I am concerned about not having much interaction with other people. There is a caregiver support group in our town that meets every month. I've never been able to go because of work, but I hope to be able to go after Dan gets home.

 

Hugs and God bless.

 

MJ

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MJ,

 

I got those shoes I used when I was in pool PT. They are sorta mesh like and you don't slip, good for the shower too instead of bare feet. We got them at walmart in 2005.

 

 

i had a sling for the shoulder that went under my arm and across to the other side. I never had one for my arm, I always wanted to keep it sorta straighten out for better recovery. In fact when I first got home sleeping in the hospital bed I kept it straight all the time. Now days I hold it like I got a sling on it. I have to keep thinking point my finger at my foot.

 

Even at night I wake up, my arm is across my chest but I went to sleep with it straight down by my side. It's trying to draw up for sure but I fight it every day. Some of your interaction with other people may have to be limited and you sound like that would be hard to do but your husband will require a good part of your free time as well. Take care!

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Fred,

 

Dan's left arm is starting to draw up. It really bothers me that it's happening. The occupational therapist stretches it and has shown me how to do it. It hurts him when I stretch it and he's constantly saying ow, ow, ow. Unfortunately, I've cut his his therapy back to 30 minutes a day because insurance has stopped. $30 for 15 minutes is really steep. I decided that PT was more important than OT and ST. I hope I'm right!. The sling that he has now goes around his left bicep and sort of wraps around his shoulder cap with 2" wide elastic that goes around his back, under his right arm across his chest thru a D ring and back under the right arm and velcro's to the back. It sounds really confusing but it's not really. Here's a link to it if you're interested: http://www.sammonspreston.com/app.aspx?cmd...ct&id=97427.

 

MJ

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MJ, First :congrats: :congrats: one for Dan and one for you. Sounds like

you are a well prepared person. Now before Dan comes home take so ME time : go get a massage, soak in a hot bubble bath.

remembertolaugh,

 

jeanniebean

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Mary Jo,

 

That's exactly why I said the wrong sling could be a bad thing and not let the arm stretch out as it should. Even when he's lying down for the night or a nap, check to see that he keeps that affected arm as straight as possible and use that hand to feel, catch, grab as much as he can.

 

For instance, if he wants the sheet or cover pulled up a bit, have him see if he can catch it with his affected hand even if he gotta have his other hand to help out. In the mornings when he wakes up have him use those stretch bands in different colors and strengths.

 

The therapist should have sneaked you a couple or three. If not, any hospital got them for sale along with the gait belts too. I still got all that stuff. I sent my extra ones to Gary (Le Hermite) a couple months ago.

 

Take care!

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Mary Jo,

Good luck! Ruth provided an excellent list.

 

I know it's easier said than done in taking care of yourself, too. If you are able, please try to attend the face to face caregiver support group. The support should help you immensely plus you will make new friends and continue to interact with others.

 

If you would, please do keep us posted.

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MJ: I know the big day for coming home is just around the corner. I know Dan must be so excited. Know I am keeping you both in my thoughts and prayers. "There's no place like home", that is for sure. All the best to the both of you. Keep us posted when you can. You know everyone here is cheering you both on and you have us 24/7. We are here for you. Never forget that. :friends:

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Mary Jo, I remember how scared I was when Ray came home after being in hospital 4 1/2 months and I knew I would be responsible for so much of what would shape his future. But here we are now, ten years down the track still together.

 

Just take it one day at a time, accepting any help offered to you. I know you will do your best and that is all any of us can do.

 

(((Hugs))) from Sue.

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MONDAY is the homecoming for you, I pray things will be alright, I'm in your corner with support.

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It's getting closer and I'm getting excited. The ramp is going in as we speak, probably 75% completed. Grab bar and chair height toilet are in. Hospital bed got here yesterday. It has flannel sheets just waiting for him! Every time I go see him now he asks me if we're going home. I remember in June when he thought he wasn't going to live. Then in August when I was afraid he'd be in a nursing facility for the rest of his life. Now we're 43 hours away from coming home!!

 

Thanks to all of you for the good thoughts! Hugs to all. MJ

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MJ: Your update sounds fantastic..... I am so excited for the both of you. I remember when I finally got to go home..... It is a moment in time I will NEVER forget. Pulling into our driveway, how I had longed for that moment. The tears just rolled down my cheeks. I pray everything goes as planned and know you have so many friends here ..... We are all cheering for the both of you. ENJOY

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MaryJO:

 

I know you & Dan must be so excited for Dan's homecoming. you sound to me very organized & thourogh person. I know you both will do well on your first day. for me real living began when I came home and started living at home. I remember first week my hubby would wake up every time I need to go to bathroom even when I didn't need any help. now he just sleep through it. trust me things will get easier at home.

 

Asha

 

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MaryJo,

 

I am so excited for both of you! It will be great to have him home. We are all supporting you! :forgive_me?: :hug: :hug:

 

 

cuzlin

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Just wanted to pop on in for a quick sec to see how it is all going for you. I am praying everything is going as planned. Just know we are all rooting for you. Let us know when you get a few spare moments to post an update. :friends:

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Mary Jo,

Dan should be home. Congrats!!

 

I know that you won't have much time for the computer now. But, I am praying and thinking about you and Dan.

 

water shoes. ...yes at Walmart.

 

Ruth

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Hello Mary Jo,

 

I want to leave a note for you, in hopes you'll find it some time when you have a moment to breath while Dan is resting.

 

I know how very busy you are, and as time goes on you'll find the "me time" you expected to find after he got home has somehow not become reality. Carving that time out for yourself is so important, but as a caregiver nearly impossible. I don't think any of us resent that, it's just the way it is. Like most caregivers, I am reminded so often that I will have that "me time" sooner than I want so I cherish the days I have with my husband and don't really worry about getting that time.

 

After five years, I have come to the place where I have gained way too much weight, become entirely too homebound - and honestly way too comfortable with the way it is. In retrospect I've got to honestly tell you that had I taken matters in my own hands as was recommended I would have found a way to get out from the very beginning. And so, Mary Jo - do find a way to get out for a few hours every week and take that time to go to the gym or go walking with friends. It will be so good for you in the long run.

 

Take care now!

 

Ann

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He's home! I'm sitting in my living room, feet up on the end of the hospital bed in the middle of the living room, surrounded by incontinence supplies and tubs of stuff I haven't had a chance to find a place to stash. It's a mess, but my sweetie is home with me!

 

He was really excited Monday about coming home. He even said he was hungry for the first time in 5 months. He didn't eat but a bit of what I made, but he said he was hungry...that's a start. Yesterday I was absolutely exhausted. I was up every 2 hours after Dan went to bed Monday pm. His colitis is really bad. Last night was much better, only up twice and I actually got about 6 hours sleep. It's been a very busy two days for both of us. Home health came in to talk to us, Dan got his wheel chair, nutrient delivered, assessed for PT, social worker came and he had his first PT session today. I think the therapist was very good. She's showing me some exercises to do with him. Insurance has only approved 12 visits thru the end of November.

 

Dan's brother is here this week to help me out and he's been a really great help. Next week I think I'll have a home health aide come in while I'm home just to get comfortable with them, then maybe venture out to the store for an hour or so. My plan is to have someone come in a couple of times a week so I can do groceries and have a little time to myself.

 

Thanks to all of you for your support. I know it's going to tough and there's probably going to be times when I'd like to put a pillow over his head...lol...but, I love him and he's home. We've come a long way in the last 5 months. I pray that I have the patience, courage, and strength to do what I need to do.

 

I must go now, the king has called. Hugs to all.

 

Mary Jo

 

 

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