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TNstroke61306

Getting ready for him to Come Home

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:tshirt: :dribble: Hi everyone. I have been reading this site off and on for a month or so and Hopefully my husband will be coming home soon (2-3 wks). I don't really know how it will be and I will probably be writing often. He stroked in June 2006 and is finally in Rehab now. His progress has been slow but steady. He has aphasia and he will be in a wheelchair most likely for awhile. The rehab staff has told me I will need to get help. Luckily I work at home so I can be here with him but I know I will need help. I'd like to know how it has been for others when you bring your Survivor home. I have missed him like crazy and have been to see him most everyday since he had his stroke. Except today I can't go see him, I have a cold and I don't want to give it to him or anyone else at the hospital. I know I am in for a "ride" but I love him so much and look forward to having him here again. He also has had heart problems, bypass surgery about 4 years ago and is diabetic. I am gonna have to learn how to give him his insulin shots and take his blood pressure and all that stuff too. He always gave himself shots before he stroked and has been under the care of the hospitals and the SNF since June. I've also gone through a period of grief for the loss of our life, the loss of the way it used to be, the way my husband used to be but I am getting used to this life now. How does the caregiver juggle the caregiving and also having some time for herself? I have only cooked about 3 times since June except for a sandwich or two. I usually grab and go. I have missed going to jazzercise but with my working hours 12 - 8 I haven't found the time to schedule it in my days. But, I really miss it and want to get back to it. My husband has always been supportive of me exercising and doing things like that. He is just a wonderful person. I've had ramps built in the house and some doors enlarged for his wheelchair to get through too. I am sure it will be an adjustment for him to come back home but I know he will be happier here in his own surroundings. Well, anyways I would love to hear from anyone who has gone through the survivor coming home, any tips or making the transition easier etc.

Wendie

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hi wendie, and welcome, you have definitely come to the right place,.sounds like you already have a good start on getting ready for him to come home. therewill be alot of info for you here. i am a survivor, i am so happy your husband will be coming home, therewill be alot of trials and error, but you will get through them. good luckand i wish you the best. kimmie

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Guest veggie.vampire

I'm in a wheelchair, only stand with 2 helpers so in the evening my husband hoists (looks like a car engine hoist, very dignified!). During the day luckily the authority pays two carers to pop in so my husband can go out to work; I can look after myself making drinks etc but need people to get me to the toilet! Twice a week my husband can do a martial art class by toiletting me before he goes. Can your husband be left alone watching tv for a few hours? A cold drink could be left for him. Alternatively, are there any friends or relatives could help out for a few hours, or is paid help an option? It does ease the burden if the ill person does all they can, often they surprise you. If left to my mum or mum in law I'd do nothing, have a large coating of cotton wool and 24 hour surveillance lol.

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Dear Wendie,

 

Welcome to our community. I'm glad you've been exploring the site, and are getting a feel for some of what lies ahead for you and your husband. There is so much good information here, and so much reassurance too. I've been my husband's primary caregiver for a little over two years now. It doesn't seem possible that we've been at this for two years, but as the days roll by a week is added, then a month and then a year.

 

I was extremely anxious for Bill to come home. I knew I could do a better job of taking care of him than those people at rehab simply because of my love for him - and the fact that he wanted to be home for me to care for him. I didn't stop to think that those who cared for him worked 8 - 12 hours a day, 36-40 hours a week and had an occasional vacation thrown in for good measure. A caregivers job is 24 hours a day, 7 days a week, 365 days a year. I love my husband, and I love having him here with me - but that is the reality of caregiving.

 

My first emotion when Bill came home was fear. He came home in a wheelchair, although he was strong enough to transfer from bed to wheelchair, to commode, to chair, to shower chair, etc. independently. His strength increased to walker and then to a quad cane and now inside he walks without a cane and outside with a quad cane. For long jaunts though we use his wheelchair.

 

Bill also is a diabetic and I had to learn about the injections. That's really not so hard once you get past the fact that you don't want to "hurt" your husband. Bill actually had me learn before the stroke how to do it for him. In case of an emergency he didin't want me to freeze.

 

If you do not continue with your jazzercise routine, or going out to lunch routine, or whatever your normal social routine was before the stroke, you will have an extremely difficult time returning to it at a later date. That's where the importance of a caregiver to assist you from the very beginning comes into play. The home health aid or rehab people aren't the people who will be providing that type of assistance to you, either. I learned that the hard way. I had thought I'd be able to run out and do a few errands while these folks were here, but I learned that's not the way they want it to work.

 

Unfortunately, unless yours is a very unusual family and friend group, you won't be able to count on these folks to spot you. I don't know what it is, but these folks never seem to have any time at all when it comes to this type of thing. You'll find it is common that those who faithfully visited in the hospital, and promised their assistance when you get home just aren't there. That's the reason why, if you can put in your budget someone to come in for a couple of hours a week to help you, it would be worthwhile for your mental health to do so from the very get go.

 

Before your husband comes home, do sit down with the doctor and discuss all the issues that may be out there. Knowledge is power, and we need all of that we can get. This last time Bill was in the hospital in August we thought this was the time he'd have to go to SNF permanently. However, the right medications, administered at the right times in the right dosages have given us some wonderful time together here at home. There are many wonderful folks here who have survived and thrived post stroke. There are others whose spouse is here because their outcome wasn't so positive. For all of us though, it's a new life.

 

In other posts you'll find some great practical advice about keeping schedules, etc. For instance, I put all our appointments in my cell phone and put them in at the doctor's office. I have two med trays and do meds once a week. I have a med list on the computer and just print it out for doctor's visits. I also use it to fill the med tray and go down the list so I don't miss anything. You may want to get a little notebook to keep track of blood sugars since the doctor will want to know how that's been going.

 

Good luck to you, keep coming back!!!

 

 

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Guest NoriB

Hi Wendie,

 

You seem like a very positive minded person, who is up for the challenge. Especially in the first few weeks or longer, when my husband came home, there were adjustments to be made every day. I learned fast that what I thought would work best for him always didn't work out best for him. I think you'll find many solutions in this forum, but you will also come up with adaptive solutions on your own.

 

For the first 6 months, I felt I HAD to rush home after work, make dinner, help him wash, and do any number of things he might need. I didn't see my friends after work, I wasn't exercising and I ended up really stressed out after awhile. Try to take short cuts once in awhile: if you can pick up takeout dinners instead of cooking dinners, or have a pizza delivered once in awhile. It can really take the pressure off from someone who works full time. And, I found this to be very important

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Hi my names Tina and I am the only caregiver to my fiance Mike who stroked in Sept. 05. He had bilateral strokes and he needs help with everything and has to have 24 hour supervision. Even so, I was relieved to have him home after months of traveling to hospital, then to long term acute care facility and then to acute rehab......it was a blessing to finally have him home and to be able to see him everyday without traveling to do it. I won't lie to you and say its easy.....its definitely not that but for me it is less stressful to have him home and care for him myself than to manage his care in the facilities, always having to make sure he was well cared for which to me didn't seem to be the case while he was in the facilities.

 

For me I have been lucky to have my sister who lives with me and this allows me to run errands and to get out for occasional gettogethers with friends, although i don't do that often but at least I have the option. Mike can not transfer to a chair on his own so we have to have someone here that can help him should there ever be an emergency that he would need to get out of the house. He also cannot dial a phone so we also need someone to be here in case something were to happen with him that would need emergency medical care. Fortunately nothing of that nature has ever happened since he's been home but he has never been left alone for these reasons, so I am very thankful that I have my sister here.

 

As far as adaptions, I was one of those people that thought he would be in rehab for a while and I would have time to make adaptions to the home....this was not the case, but you have done alot of things that you would need to do so your at least ahead of the game. For me it was a learning process similar to what it was like to bring home my first child. I have learned alot as I go along, and I continue to learn even now almost a year after he came home.

 

I wish you luck.......

 

Tina

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Wendie -

my heart breaks for you as this month makes 21 years that I am a survivor -

when I came home. we had someone here to clean/homebound physical therapy, with 3 members of family stopping in on certain days -

my husband has been the reason why i am a survivor

June :cheer:

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I thank all of you for your replies and advice. I think it will be two weeks until he comes home. He does not transfer well at all yet and they have ordered me a lift to bring home. I am contemplating getting a van with a wheelchair lift. any thoughts on that? I again thank you for your replies and I wll continue to read and talk thru this website to you. God Bless!!

 

Wendie (George's wife)

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Hi Wendie,

 

I would strongly suggest that is you have the resources to get a van with a lift you do so if you are planning to be able to take your husband out to doctor's visits and rehab, etc. My husband is beyond the need for constant use of a wheelchair now, but putting it in and out of the trunk of the car is not so easy. Although I've never expected it, I can count on one hand the number of times I've been offered help to put it away. JeanR suggested there is a lift available for cars, too, but I didn't look into it. I'm sure she will pop in though!!

 

Good luck, and don't forget to get some help for yourself when your hubby comes home! Keep us all posted.

 

Warmly,

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Ann,

 

It's a Bruno lift that can fit in car trunks and vehicles like Blazers for lifting wheelchairs. Works great if your guy can transfer and you don't need to leave him in the chair while he is riding. If you are buying a brand new vehicle, Chevy has a program where they'll pay for the first $1,000 to install a lift (or a ramp) and they cost around $1.500 for the lift that picks up manual chairs. You can get a model that will pick up power chairs too but I don't know their cost. I love ours, it's real back saver and two other women from our group speech class got them after seeing ours. Look up 'wheel chair lifts and ramps' in the phone book to locate a dealership to find out if they have a model that will fit the type of car you already drive or are planning to buy. Chevy will pay this $1,000 for mobility equipment up to a year after you have purchased a brand new vehicle but you have to ask about the program, the salesman won't volunteer this information, at least ours didn't. Our conversion place who installs the ramps and lifts also sells some used vans with ramps all set up.

 

Jean

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George came home Thursday nite about 6:30 from Rehab. He really needed the extra two weeks rebab the doctor suggested but Insurance said no so we had to bring him home. I frantically for 3 days did training in transferring, using the lift, bathing etc Monday, Tuesday and Wednesday then Thursday he came home. He was supposed to leave via ambulance at 2:30 and after waiting all day for the nurse to go over his meds with me at 2:10 she started to go over the meds!!! Then she said "You DO have all of these prescriptions don't you?!!!!!" And I said No, I don't, I thought they would be coming home with George and then she said to me "Haven't you ever been discharged from a hospital before?" I got furious, in 15 minutes he was to leave and now she said I needed to get all of the MEDS filled at the pharmacy!!! I immediately went to the Case Manager and explained what the nurse said and that I had NO way of knowing that I would be responsible for getting his meds ready, especially 15 minutes BEFORE he was to come home. Well, she took charge and faxed over the 5 page list of meds and cancelled the ambulance for later so I could go ahead and get to the pharmacy to get the meds etc. SO, by the time he got home it was 6:30 instead of 2:30 or 3:00!! He was so anxious to come home and was ready at 11:00 am to leave so it was stressful on him and me both. Plus the nurse was a smart aleck!! Well, we are home and Thursday nite wasn't too bad. I had made his dinner in the crock pot and had it ready and then he was tired and slept most of the night.

The NEXT morning was a disaster!! I had a heck of a time manuevering the Lift. I apparently had "forgotten" all I learned in my 3 days of training and it took an hour to get him into the lift and into the chair after I gave him his breakfast, insulin shot and meds. He did pretty well in the chair all day and was ready to get back in about 4 pm so we used the sliding board for that. Today was okay but since he is totally incontinent.......well, you know how that is. He got angry with me this morning and yesterday when I was cleaning him and changing him for toiileting. He weighs 231 pounds and is 6 ft tall. I am only 5'5 and weigh 165 so it has been really hard for me to move him back and forth in the bed for changing. whew......

The home health nurse was by for her evaluation and I had two agencies stop by the house to talk about additional caregiving. I work at home and I will have to get help. I am exhausted today and my back really hurts so I know I cannot do it on my own. I didn't realize how hard it was going to be. There is no family here to help just George and me. I know it will get better, but I now know I will need help George is 63 and I am 56 and still work full time but have my office at home. Well, I have rambled on too long. :yadayada:

 

Enough for tonite. Wish us luck.

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Wendie,

 

I'm glad your husband was able to come home. When are daughter came home 2 months post - stroke, it took some getting used to. We had to try and get a routine going. We were all apprehensive and anxious. There were so many things to worry about: all the medication and when to give it, setting up doctor appts., going to therapy three times weekly, bathing, dressing, meals, bedtime...etc. :juggle:

 

We finally did get a routine going and little by little life became easier. Unless of course something unexpected came up. :hahaha:

 

The first thing we bought was a pill organizer-life saver for meds given several times daily. :wink: We tried to arrange furniture as to make clear paths, not easy in a smaller home. We picked up all the throw rugs, as to prevent falls. :yikes:

 

My husband and I get out at least once a week to clear our heads and relax. :cloud9: Rachel's sister stays with her during this time. What a godsend this is. You need to try and take time for yourself. :happydance:

 

Hang in there, and when you can get help, take it. I will be praying for you. :hug:

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Today was a little easier. AFter getting George changed and took his sugar and BP then he got up in the wheelchair via transfer board. Then he at breakfast at the table, watched a movie, ate lunch in the chair, slept and then backin bed after 4 pm. Right now he is eating dinner. He doesn't really say much just nods h is head a lot. I would like for him to talk a little more. It's going to take a little time getting a routine going. I am working just parttime this coming week 6-8 pm and then the following week start back full time 12-8 pm. But I do work at home so that will be better. I can see now that I will need some help, plus I will need to be able to leave the house some. I have been in the house since Thursday evening and I am used to coming and going as I want to. I am going to get a pill organizer, I actually have one somewhere but can't find it......of course....

Wendie

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Wendie,

 

You posted that your husband has aphasia, so don't expect too much in the way of communication while he is settling into a new routine. It takes a lot of energy for people with aphasia to try to carry on a conversation, assuming it's a mild case of aphasia and it is even possible. Are you going to arrange for speech therapy? How much has he had?

 

Jean

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Wendie,

I am reletively new to this site and just read your postings about George coming home and all you went thru to get him home the first day. I am so happy to read the second day went bettter for both of you. I am sure each day will get easier (with occasional set-backs).

 

I can't wait for the day my boyfriend Bill can come home. I know it will be difficult but I miss him so much and I hate having to go to the rehab center each day to see him and having to share him with the thepapists who dont love him like I do. Your story give me hope and advice on what to be prepared for. Thanks!

 

Basically I just wanted to write to you and tell you YOU ARE MY HERO!!!! You are doing a great job and George is a lucky man to have you by his side. Keep up all the good work Wendie and know that you have helped me too.

Much love to you George,

Tina M

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Thanks for your kind replies....Today is Thanksgiving and my sister, her husband, her daughter and son-in-law (plus 2 kids) came in last night and prepared the Thanksgiving dinner for us. We didn't have to do a thing, plus a guy I work with and his wife brought us lunch over today. My neighbor behind me who has been mowing my yard ran to the grocery store and picked up some essentials and also made a big pot of Chicken soup, salads and dessert the other day. I am overwhelmed by the kindness of people.

I decided I needed to get some help and hired one of the agencies that has men that help with the tub showers and stuff like that so I will have tomorrow to go out and run errands and do some things I need to, plus get away from the house for a little while.

 

Tina, I really appreciate your remarks, :cloud9: but it is not easy taking care of George at home. He is a big man and I have really worked hard this last week. He seems glad to be home though and that makes it worthwhile, but it is not a task that you can do yourself. You will need to have someone to help you. We didn't have anyone over the past weekend and that is how I decided that I will NEED help. The agencies charge somewhere between 14.75 and 15.50 an hour here but it will be worth it. I have found that the "insurance provided home health care" is ok, but the aides don't do shower baths and the therapists have only been here for their evaluations so I don't know what kind of therapy we will be getting. Insurance ONLY allowed for 4 nurse visits total!!!!! and they only certify week by week, so that is stressfull because you don't know if you will get insurance paid care next week????? :juggle: I have only worked parttime the past two weeks but I have to go back full time on Monday, need the paycheck! I have my office at home so I can be here but I am on the phone most of the day since I am in Customer Service so I can't just come and go at a moments notice.

 

I hope you all had a Happy Thanksgiving. I am thankful for so much!! George sleeps a lot but that is okay hopefully it will help his brain heal. He had a really bad stroke. He can talk some but not a whole lot and I deal with "incontinence" so he really requires 24/7 care. I know that is hard for him since he was completely independant before the stroke. STrokes really are devastating arent' they?

My prayers for you and your loved ones.

 

Wendie

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