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Old 06-29-2012, 06:44 PM   #1
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My Husband had stroke 5 weeks after we married aged 29

Hi I'm new here and thought I'd share my / our story.

I'm 31 and married to my childhood sweetheart. 3 days before we were due to get married in Oct 2010 my husband got a phonecall from his doctor to say a recent chest scan had shown some bad news. they asked us to cancel the wedding and get him to the local hospital that evening. However we were over 5hrs away by car and our guests had already arrived so we couldn't do it, though it was a very hard decision. We got married, cancelled our planned honeymoon and raced back to our home city where they admitted him. We spent our honeymoon week at the hospital having scans and tests, he came home supposedly out of danger after 8days but needing follow up tests, 5 weeks later he had a major stroke and was left left side paralysed. 18 months on he's made some progress but our lives are in tatters.

He spent 4 months in hospital, we had to rearrange all our living situation to make room for a wheelchair and lots of lifting equipment.

Unfortunately my health is fragile and indeed he was my carer before though less personal care more practical help. We had a lot of help to start but after budget cuts have to go it alone. He can't wash, dress or clean himself properly after toileting though he can now get in and out of bed mostly unaided and can eat if food soft or cut small.

Our families have done a lot but they live 5hrs away so day to day it's just us and the few friends we have left.

We're very isolated, I'm struggling to cope. My husband was also left badly brain damaged so has no short term memory and his whole personality has changed. He can swing between being so sweet and lovely to rude, aggressive, argumentative, sullen etc. He's being treated for depression and I know a lot of it is frustration but I do often feel more like a maid or nurse than his wife.

It's just so hard. I've become better at taking some time for myself and have had 2 short breaks since he got sick but am always just so exhausted and struggling to cope especially with my health needs on top.

Are there any other younger wives out there who want to connect? I'm finding it hard with my marriage as we had no time to create depth and have no fun times to fall back on. We obviously have our premarried life memories but nothing to bind our marriage together when things get tougher.

anyone with any advice? It Would be much appreciated!

I'm really struggling to see any hope for the future and to keep going as I feel so weighed down by all that's expected of me

Thanks x

 
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Old 06-29-2012, 07:09 PM   #2
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Re: My Husband had stroke 5 weeks after we married aged 29

SoggyFish,
Hello and welcome to the board. This is a very sad story. I feel very sorry for you and your husband. Just so you know, I had a major stroke in Jan. 2010. I relate to both of you quite well. I was the bread winner in our family and really doted on my wife for 12 years and then in an instant our roles where reversed and it was not easy whatsoever. But there is hope, I promise. The start is finding us. You will find a loving and caring family here on this board and talk to others that know exactly what you are feeling like right now. You are not alone at all. You have just met many friends for all over the world.

I will try and write more later. I am tired right now, but had to respond to let you know that there is hope. I know that you will get more responds here soon. The first thing I would suggest before I close, is to call your husband as "Stroke Survivor" - he is not a stroke VICTIM!!! That one word makes a big difference believe it or not as a start for recovery. Recovery does happen, you both just need a little guidance and lots of love and prayers from us. Please write and vent as much as you need. You have friends here that care.

God Bless you and your husband,
Tim

 
Old 06-29-2012, 09:22 PM   #3
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Re: My Husband had stroke 5 weeks after we married aged 29

Oh, my, that was a hard thing to have to go thru, so early on in your marriage. I am not young, my husband of 41 years had a massive stroke and is much in the same boat as your husband, except he can't raise out of or lay down into the bed for himself. Pretty much all he can do is:
1. eat the food I cut & place before him
2. brush teeth with brush I load & hand him
3. wash face with cloth I hand him
4. brush hair, often only doing one side
5. watch tv
6. he has gotten to where he can do what I call 'practice walking' up and down the driveway. But, no, he cannot just get up and walk across the room. He needs his gait belt and a spotter.
7. he still takes his citalopram and maintains a good attitude, but don't know how that would change if he wasn't taking it.

I really don't have anyone to help me either. I have fibromyalgia and wonder how long I'll be able to do this, and just hope he gets better so he will not be so dependant on me. He always carried my frail butt on a pillow, and now I'M the strong one? Oh, my. I will do it until I can't. But.... I'm 41 years into this marriage, I don't know how I'd feel if I were young. You are in a good place. There is also a caregivers board here.

Last edited by Sandy Caregiver; 06-29-2012 at 09:23 PM.

 
Old 06-29-2012, 10:19 PM   #4
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Re: My Husband had stroke 5 weeks after we married aged 29

Oh, I meant to ask. What was it that the chest scan, showed, that pointed to a problem?

 
Old 06-30-2012, 01:47 AM   #5
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Re: My Husband had stroke 5 weeks after we married aged 29

Thanks to you all for replying, it's encouraging.

Tim I apologise if my wording upset you, though I can't see the word 'victim' in what I wrote and I do indeed see him as a survivor as I nearly lost him twice over.

My husband had been suffering from lack of breath, usually he just got out of puff for no reason, even when sitting but would sometimes stop breathing completely at night and need thumping to wake him up to start again he had been seeing a respiratory consultant about 3 month before our wedding who decided to do a chest scan. By the grace of god the technicians read the brief wrong and added some nuclear dye which showed up a condition called takayasu's arteritis - it's an ultra rare form of vasculitis that causes the arteries to narrow due to inflammatory build up. 3 of Tom's 4 main arteries carrying blood from heart to brain were totally blocked and the 4th very narrowed-I don't know how he was walking around. He also had 2 blockages going from heart to right arm. Without the dye they wouldn't have seen it.

After 18 months we're no closer to discovering the breathing problems but other stuff became more important!

Sandycaregiver-even though our marriages are different ages your story resonates with me, all those things you listed I was doing for Tom and some still do, thankfully he has improved and can now do some of it himself, I used to take him to the loo at least 3 times a night meaning helping him sit, transfer into wchair, use twisty machines to transfer from wchair to toilet and clean him up, do the reverse, back to bed and it was horrendous, I often sobbed as I was just so exhausted and in so much pain (I Too have fibromyalgia and also chronic fatigue syndrome) and I honestly don't know how we got through it but by the grace of god. He does sometimes get stuck in bed or loses his arm off the side of the bed which needs rescuing or simply panics as doesn't know where it is and he loses the duvet 10 times a night so I don't sleep though I think it's panic mode for me as am terrified he'll stop breathing, have another stroke (both his 2 happened at night) or he'll get up and wander off due to confusion and the weird things he now seems to do!

Do you have any input from occupational therapists or physios? I know Tom would not have made his first load of improvements without his physio? He has a rubbish one now but even that's better than nothing? Our occupational therapist worked with Tom to get him more independent and although it's still early days he can now load and hold a tooth brush, put trousers on some of the time and have a semi independent shower with lots of adaptations. He was Adament that he'd never have or use an adaptation but after a lot of nagging and begging he agreed and hasn't looked back, he's got a stick and can shuffle very short distances, bath board and handles and although he can't wash himself he can freshen up and do part of the work, special toilet seat and more bars means he's mostly toilet independent etc - if you don't have input it's worth fighting for help as stroke victims (especially in the UK, I don't know about other places) are largely left to their own devices after discharge from hospital? We've had to really fight for the little help we have had.

X

 
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Old 06-30-2012, 07:01 AM   #6
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Re: My Husband had stroke 5 weeks after we married aged 29

Soggy, I used to have flexeril to take for my fibro. It would keep my muscles from tightening up when I laid down and shut my brain up. but since my husband's stroke, I dared not take it, not once, because it gives me a hangover. I no longer have the luxury of sleeping late or not being able to get up, because I have to. Also, my brain would be wired and not let me sleep, it's like an adrenaline burst your brain gets, instead of the sleep mode, at night. BUT, I noticed that my husband takes 3 baclofin a day, for muscle tightness and is not drunk on them, so I asked my family doctor if I could try it, because I can't take the flexeril anymore. Just 1 about 8pm gets me ready by about 10pm. Oh my ****!! I feel human afterall!

Could he have sleep apnea? Does he ever make a loud snort at night?

My hubby wears Depends 24/7. I am fortunate that early on after release from rehab, he understood he needed to work on the bowels. I can't say he CONTROLS his bowels, but he is able to tell that it's coming, and our bathroom is right off our small TV room, so I can get him in there quick. I have the toilet riser and handles, also. We have only just started working on urine. He is mostly unaware of when he does it, but I bought 2 male urinals (1 bedroom & 1 by toilet) so that he could start practicing trying to go in it. He asked why, and I told him, one day he would be able to walk into the bathroom and stand in front of the toilet and go himself, and this was practice. It's not easy for him to get it out, he bears down as if he is constipated, and actually pushes from both ends - which resulted in 1 accident. Fortunately, I have a bedside commode and was able to get him on it when he realized the other was coming out!

Is it possible that he could be located on the other side of the bed, so that his stroke arm is not on the edge? I was fortunate that there was only one side he could fit on (my side) with his commode & whl chair, and so never had the 'lost arm' problem. I got a Carex bed rail for the side of the bed, that goes up all the way toward the top of the bed, to help him stand steady while I'm pulling his clothes up. I even got one for my side, as I'm in pain when I first stand, so figured I would. If you are interested, measure the distance from the floor to the crack between your mattresses, and I'll tell you the bottom setting on these, as they are often too tall to fit right between the mattresses. His stroke leg is also on the inside of the bed, and he puts his good foot under it, like crossed ankle sitting. Then I swing them off the bed, as I raise him from behind his shoulders. The momentum of his legs coming down helps to raise him. He also pulls on the bedrail with his good hand that is right beside it, WHEN HE CAN GET THE CUE, but sometimes it goes right over his head. If he is just urinating, he don't need to get up, get the hand held urinal for him. I pour it in the toilet and put a drop of dish soap in it and cold water (not touching the faucet with it), swish it and down the toilet. Fresh for next time.

I also wonder if my life will actually get harder when and if my husband does become mobile, because he might do anything. He has problems with sequencing things and can only take one line commands, sometimes he doesn't understand those.

I was finally happy, after 41 years, to hear my husband snore, because I didn't have to get up and shine a flashlight on him to see if he was still alive. He did have a horrible breathing problem that for the first month, everyday, I wondered if I would lose him. He had forgotten how to breathe deeply. I would continually be saying look at my belly - see how the bottom of my belly expands when I breathe in deep? I'd try to get him to do it, because he was breathing soooo shallow, but he couldn't. He was having terrible breathing problems with lots of squeaking in his neck and I was terrified he was either going to smother or have a heart attack from the stress of trying to breathe like that. At one point I took him to the emergency room. When we got home, I remembered that when he was young, he used to have a terrible time with his asthma and allergies and hack & spit non-stop. But it got better, and now it seems to have reverted, at at time when he doesn't even know how to clear his throat! I would try to get him to clear it by showing him the uh hmmmm, move, with fist in front of mouth. He would make a humming noise back at me, while wheezing. Anyway, I finally got it. I watched him taking his advair (which works wonders on his asthma AND allergies) and saw he was just gasping it in to about throat level and expelling it right out his nose! None of it was getting to his lungs, no wonder his symptoms came back! I told him that's why he couldn't breathe and his throat was all squeaky. He finally got it, and knew what to do, he used his inhaler correctly and finally had sleep! I honestly don't know if he'd still be alive under that stress if he had not been able to breathe the advair in correctly. I mean, the stress of trying to sit up while you miserably suffocate, is not in anyway real sleep. I watched him like a hawk, fearing each day was the last. He has become 'healthy' since taking his advair correctly!

What our insurance wouldn't pay for 100%, I didn't take. I was able to find everything else (mosty bath room type stuff), free at the local senior citizens. Many people donate med equipment after a senior dies and so it is there for those that needs it. I found the bedside commode, hemi-walker, tub handle that latches on the side of tub for secure getting out, and a slide over bathseat. He can sit on it on the room side, and I put his legs over, then he slides over into the tub.... although, I have to confess that all the crying and praying he does at shower time is hardly worth it. I usually just use those thick 'bath' cloths from Walmart.

We were very fotunate to have spent a month in an accute rehab place where the therapists were all a happy, friendly, and encouraging bunch. They taught us to be happy. If not for them, we'd probably have fallen into being down about our problems all the time. But they taught us by their example and it is still with us. Today we were eating banana muffins and coffee on the screened in porch and hubby was dropping crumbs all over. I told him, 'don't worry about it, I can vac out here later. It's more important that we enjoy our breakfast and are happy".

I know our ages (60 & 61) sound old to a young person. I was young once, and I know how the numbers sound. But, believe me, unless you are obese and have a multitude of health problems already, it doesn't FEEL old. My husband was an athlete and ran in marathons, week long bike rides where he biked 60 or more miles a day, zip lines, climbed bridges, whatever! I was a vegetarian, and fed him only the highest quality of foods and whole grains - except for his lunch and his many business trips - where he ate his own choices. Still, he ate better than most people these days, from the 2 meals a day I had him, when he was not traveling for work. His blood pressure, heart rate, and cholesterol were always perfect numbers. When he took the stress test they finally told him to just get off because they couldn't make his heart rate go up, because of his fitness. If I had a multiple choice of what happened to my husband like this:
1. cut his own head off while mowing the lawn
2. attacked & killed by wild wolves while running the INSIDE track at Athletic Center
3. stroke
--I would have marked off stroke first. As the others would have seemed more possible to have happened to him than stroke. He had ran at the center before going to work the day he had the stroke, which happened right after he got home from work that day.

He's had a lot of in-home therapy, and is down to just a few left in physical therapy, that are working with his walking with more balance and control issues.

I let the OC go because she was trying to teach him things that he just couldn't do yet, and actually hurt himself trying to do them. Also, she was one of the pity people who kept reminding him of all his problems. The last time she was here, she said, "you must be soo frustrated and SOOOO angry, because you used to travel all the world and do all the marathons and NOW you need help just going to the bathroom" (with her best pity face on). We told her we didn't think we needed any more OC that night!

The other speech therapist was terrible. We started with a good one, and then they hired a new one that did no drilling or cuing. She would ask him what year it was and he'd say 1997 and she'd say ok and make a check mark. She'd ask him which picture was a razor and he'd point to a dog and she'd say ok and make a check mark. She was only showing up 3 times a week to keep statistics, so I gave her the boot. I now work with his speech therapy by cutting out all good pics of food/clothing/tools/whatever from the weekly ads and going over them with him. I have flash cards that I bought in the childrens section (in toys) and also a book on finding hidden objects (good for his training to look at things hard as he has right side blindness) and a book on comparisons (which is larger/smaller/same). I had noticed when I asked him to hand me something that he didn't know which one was larger, so I thought the book a great idea when I saw it. But the big thing I have for him is an English Immersion software in 3 levels. It drills him on words and has games and he can record his voice. I didn't know if the voice part was going to have value, since he is not a foreigner trying to get the accent right. But, he has to repeat after them, which is great, because he gets stuck on words, so it pushes him to try to get the word THEY said. Then he can hear how he did. He did lose all his many computer skills, so I need to sit with him and prompt him when he gets the touch pad/click button reversed and can't the program work!

We actually do well, because we learned to be happy, and I am stronger than I ever imagined I could be. The worst part of this, (beside the obvious) is that we were moving and the other house is just sitting there, waiting to be cleaned out, cleaned up and put on the market. I'm the only one left to clean it out and paint, clean carpets, everything, and I can't really get much time to go there. I have taken him with me 2 times, but it is soo boring for him. I have went twice when I put him down to nap, and he understands that I'm going there, and he doesn't get up, so I know he won't hurt himself. I put a clock in there so he can keep track of when I left, as he might imagine it is longer - he had a time problem for awhile where he thought 1 day was 6 months and such. I put what time I left and where I went on a big envelope at the top of the clock, so if he wakes up he can compare when I left with the time and see how long I've been gone. He knows I'll only stay an hour or so. So, in all, I've only been there 4 times since he got out April 6. 2 mortgages, 2 utility bills, 2 real estate tax bills, 2 houses to work on - ack! I had told him that we were both around 60 and needed to get into a flat house before something happened to us, and I guess I was right about that... but I always thought it would be me who went down!

 
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Old 07-01-2012, 09:23 AM   #7
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Re: My Husband had stroke 5 weeks after we married aged 29

Dear Soggyfish
Welcome to our family of survivors and caregivers. I am so glad you have found us. I have been following your posts and my heart goes out to you. I am so sorry for what has happened to you and your husband. It is not fair at all and I have struggled to find words of encouragement for you. I am so thankful Sandy is responding to your posts. She too is going through so much with her husband and sometimes we gather great comfort from someone dealing with the same difficulties. She is such a great wealth of information as travels this path of caregiving. And thats what this board is all about. We have all either had a stroke or we are caring for someone who had a stroke. There is so much information here and many loving people ready to do what they can.
I had my stroke 2 years ago and been very fortunate to have gone from wheel chair, walker to cane. My recover is still going on it has never stopped. Oh there have been some times when I felt recovery had stopped for short periods of time but not for long. I never gave up and make sure your husband never gives up. Tell him every day its going to get better. I am so sorry for the depression and confusion. That makes it so hard on you. After reading your posts I really admire your dedication and determination to make it work and the love you have for your darlin husband. God Bless you both and keeping you in my prayers. God Bless Mulchie

 
Old 07-02-2012, 09:28 AM   #8
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Re: My Husband had stroke 5 weeks after we married aged 29

I'm sorry, I wish I could say I understand what your goimg through but I don't. However if yo want to vent or need to talk I would be happy to listen.

 
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