17 replies to this topic

[mjc]

Hello there.. I have been searching for a support group and until now haven't been successful. My husband is a quadraplegic but from a stroke this year- but there is no-one out there in a similar situation who i can talk to so i feel very alone. I don't know if i can qualify to be part of this forum. He is 48 and is just learning to use a power chair. He has some use of one hand but needs full cares/ hoisting etc. He can't speak but is cognitively intact. He isn't home yet as we haven't had the house modified. it is all very scary and i am not sure how we/ i will cope. I wish i could chat with someone around my age who is in a vaguely similar situation. We have a 13 yr old daughter.
Cheers

[just the mom bj]

Hi, Im just the mom, my son is the quad, Im looking at 7 years this month and Im also alone.

[Simba]

Hi mjc;

Welcome to the forum, there are a lot of carers/spouses on here so you have found the right place to find someone who can relate to what you're going through.

A lot of spouses also feel quite alone & isolated as we tend to be mainly busy looking after our other halves at home and it becomes frustrating trying to talk to other AB's sometimes who just have no idea what it's like. You are doing the hard yards now, hopefully your husband will be able to come home shortly to a modified home and you two can work on getting back on track together.

I'm a post SCI wife so don't have a lot of experience with the actual injury side but I can tell you that SCI isn't the be all and end all, life will go on for you both, it won't be easy but it will get better. Also it may be helpful to put his level (if you know it) on your profile at some stage as this gives people an indication of his function. He is quite recently injured so you may not have that info yet...the one positive to newly injured cases is that there is some possibility of regaining function and rehabilitated. Don't let SCI scare you too much if you need support you will find it on here, if there are any specific questions you have then post them and someone will come along with some insight and answers for you.

Wish the best for you & your husband with all that is ahead

[Tetracyclone]

you will find what you need. All of us are overwhelmed for the first few years., but more people will pop in here.

[mjc]

wow...thanks for the replies- SO appreciate it. I have felt like the only person around with a youngish spouse newly in a wheelchair. i know that wasn't/isn't the case but the only people i was connected with had partners who had recovered partially from strokes and were walking. My husband's damage is actually a step higher than the cervical spine- in the brainstem. Not a great place to have a blow out.
i don't know if others get this, but people tell me i am amazing and a Saint etc. Its so not true and i feel anything but amazing. We really just have to go with what has happened- nothing heroic about it is there?! And some people say, i couldn't do what you are doing- well what else can you do?
I sit in our lounge or dining room and can't imagine how a wheelchair will navigate around the tight spaces..

[just the mom bj]

 mjc, on 08 August 2011 - 04:18 AM, said:

Hello there.. I have been searching for a support group and until now haven't been successful. My husband is a quadraplegic but from a stroke this year- but there is no-one out there in a similar situation who i can talk to so i feel very alone. I don't know if i can qualify to be part of this forum. He is 48 and is just learning to use a power chair. He has some use of one hand but needs full cares/ hoisting etc. He can't speak but is cognitively intact. He isn't home yet as we haven't had the house modified. it is all very scary and i am not sure how we/ i will cope. I wish i could chat with someone around my age who is in a vaguely similar situation. We have a 13 yr old daughter.
Cheers

Hi mjc, this is just the mom bj,
I am 54, my son had his accident at age 26, 7 years ago. I also have a teenager, 17 starting her senior year of high school. I had alot of support from the Spinal Chord Commission of Arkansas & the neuroligist in Little Rock who assisted him in rehab for 30 days after his initial accident. When you love someone you do everything you can for that person, and there isnt alot of time for you !
Ive babied my son and learned the hard way that they have to learn to do what they can for themselves, praise him for any little thing he can do by himself. If you do everything for him he will come to expect you to do it always. TOUGH LOVE is a hard thing to do, but better in the long run. My daughter has felt ignored over the years, at times, when so many hours a day are spent with my son, try to have that alone time with your daughter.
I pray for you and your husband and family, for future caregivers to be strong and caring. Always accept help, prayer helps me !! bj

[Spinner]

My husband is 47 and is C5 complete quadriplegic. Between us we have seven kids, three at home ages 9, 11, and 12 (13 in a couple of months). While someone else helps out three days a week, I am his main care provider. Our home is accessible but when he first moved here he couldn't get into any of the bathrooms and couldn't use the shower. It has been slow but sure process to get it where it is and there is still some work to be done. We are fortunate because he has no brain damage, can push, and drives. Because his injury is so high he does need help with dressing and transfers (he doesn't transfer himself except for into bed and he drives from his chair). I can't speak for you, but I don't feel at all like a saint. I feel like a woman whose spouse just happens to be living with an SCI, the fact that the love of my life can't walk is really just one of those things you know? Just keep swimming, access all available resources (try the Paralyzed Veterans of America, your state's Department of Health and Human Services, the social security administration, and ask everyone you know for any and all information they might be able to provide). Remember there are federal and sometimes local programs that provide funds to help make your home accessible. Keep coming back here, it is a great community with lots of caring and thoughtful participants. You are not alone.

[wheeliebear75]

The ULTIMATE decision as to who's "appropriate" to be a member lies with Simon the site's creator/founder. You may want to specify on your profile in the spot you put "carer" you may want to replace it with something like "wife of stroke victim" or "husband had a stroke", this way everyone has a better idea of how to help you & doesn't bother giving you advice that is geared for spinal cord injuries.....a stroke & Spinal Cord Injury can both cause paralysis just in slightly different ways/mechanisms. The GOOD news about it being a stroke vs. SCI is that in general the spinal cord has a 2yr window for improvement whereas the brain has more like 5yrs, also although neither the brain nor spinal cord can "regenerate" so to speak....the brain CAN "reroute itself" to a point. The average person uses 10% of the brain's capacity so that leaves a slightly higher probability for improvement.

There are a few of us who ended up with a TBI (Traumatic Brain Injury) on here. I wasn't unable to speak but I did have trouble just putting thoughts into words & in being able to fully explain how I felt....& I know this kinda helped make my frustrations worse than if I didn't have the CNS combo package. The inability to speak & communicate, AND to BE HEARD may be more of a frustration for him than the paralysis is.

I think the reason why so many ARE surprised is that sadly too many people say "I do" without taking the previously said vows to heart....most weddings they have vows of "In SICKNESS and in health", "for better or for WORSE". Many a marriage & significant relationship became victims of circumstances surrounding major illness/injury.....they're more than happy to be captain or 1st mate when our ships are cruising along a calm ocean, as soon as that ship hits some rough seas they abandon ship like the rats they truly were/are.

With the kids....make sure to find out how THEY feel during all this turmoil. I was 14 when I got hurt & Children's Hospital provided (insurance paid for it of course) psychology sessions not just for ME the one who actually had the accident but also for my younger sister (she started having behavior problems), for my aunt (she had some MAJOR issues with a form of "survivor's guilt" because the reason we were where we were was because she picked dinner at "Sizzler" for HER birthday),and for my mom cuz she was having some issues with all the added stress (both emotionally & financially).

Make sure you take care of YOURSELF!!! Since it sounds like you're sort of like the glue holding everything together...taking care of YOU helps ensure things don't fall apart.

Welcome to the forum.

Edited by wheeliebear75, 10 August 2011 - 08:15 AM.

[pinkcloud]

hi mjc

yeah that 'you must be a saint to do this' realllly pees me off - why is it only saints who would love a person with illness/disability......says not much of our society hey.

personally i'd say to them 'i know who not to come to then, if i get ill'....

it a kindhearted gesture to say...i get it too sometimes 'ooo do people only phone you because they feel sorry for ya being alone....urmmm well seeing as the same people phoned/spoke to me before.....i doubt it. I never have a one sided conversation about me illness...i like to escape from it actually.

your a person many may wish to be like....thats the compliment i reckon is more fitting

[August]

 wheeliebear75, on 10 August 2011 - 08:06 AM, said:

The ULTIMATE decision as to who's "appropriate" to be a member lies with Simon the site's creator/founder. You may want to specify on your profile in the spot you put "carer" you may want to replace it with something like "wife of stroke victim" or "husband had a stroke", this way everyone has a better idea of how to help you & doesn't bother giving you advice that is geared for spinal cord injuries.....a stroke & Spinal Cord Injury can both cause paralysis just in slightly different ways/mechanisms. The GOOD news about it being a stroke vs. SCI is that in general the spinal cord has a 2yr window for improvement whereas the brain has more like 5yrs, also although neither the brain nor spinal cord can "regenerate" so to speak....the brain CAN "reroute itself" to a point. The average person uses 10% of the brain's capacity so that leaves a slightly higher probability for improvement.

I'd just like to clarify here that a stroke and SCI can be the same thing. A stroke can occur both within the brain and within the spinal cord. The latter is rare, but not rare enough, unfortunately.

August

[mjc]

Thanks everyone for the really helpful replies and support.
How did other partners help when their injured person came home? I can't even position him in his chair by myself as i am not strong enough..i don't know what will happen when he comes home and there are no staff to go and ask help from.
I am terrified i will be constantly doing as he has minimal function for everyday things. He can use his keyboard and mouse thankGod but even using a spoon is a struggle- though he tries!
I feel overwhelmed already and its only been 7 months and he's not even home. He hates where he is and lives for when he can come home. I feel like i have the weight of the universe on me.

[Simba]

mjc I know it's hard but you'll have to tackle the difficulties one at a time. you mention your house is quite cramped for example, one thing you could be thinking about is how to re-arrange furniture to ensure there is enough room for passage of the wheelchair on his return, keeping yourself busy & occupied on constructive planning like this will help you from stressing out too much as it will make you feel you are doing something about it.

What is your husbands actual function? Is he fully paralysed for example? Perhaps it might be informative for people to know as they could possibly suggest things like equipment or disability products which would make your lives run more smoothly when he does come home. Has there been any mention of care provision for when he returns home to assist you, you may want to start looking into whether there is any funded hours for home help which will help you cope too. I would statr asking questions it's easier to plan ahead if you know what the process will be on his release and maybe you could start organising a few things before he gets back home so when he is home again you'll only have to concentrate more on his care and not a million things at once.

You could also try and start a new topic on here and see what other wifes/carers have done who have had their loved ones returning home, may be very insightful.
Hope things will improve for you over time, if you have more specific questions just start a new thread and I am sure others will try to provide some answers for you.

[TwirlGirl]

 mjc, on 20 August 2011 - 05:57 AM, said:

Thanks everyone for the really helpful replies and support.
How did other partners help when their injured person came home? I can't even position him in his chair by myself as i am not strong enough..i don't know what will happen when he comes home and there are no staff to go and ask help from.
I am terrified i will be constantly doing as he has minimal function for everyday things. He can use his keyboard and mouse thankGod but even using a spoon is a struggle- though he tries!
I feel overwhelmed already and its only been 7 months and he's not even home. He hates where he is and lives for when he can come home. I feel like i have the weight of the universe on me.

Mjc, You are not alone!
I just joined this forum about an hour ago and I am amazed at the amount of imformation and compassion here. I am the caregiver for my husband, a C-4 complete quad., I am fortunate to have help come in the mornings 5 days a week, but I did not start out that way. I remember how scared and overwhelmed I was when he was released from the hospital. We were leaving the safe haven, a place where everyone was in the same boat (we were at Shepherd Center) and coming home alone in our own boat. It was quite an adjustment, but we managed and you will too. Take it one day at a time and put your trust in God, he will give you the strength to get through. Don't be afraid to ask for help. You will find that there are wonderful people in this world and you will learn who your TRUE friends are.This WILL get easier. Good Luck and God Bless You.

[mjc]

 TwirlGirl, on 22 August 2011 - 03:34 AM, said:

 mjc, on 20 August 2011 - 05:57 AM, said:

Thanks everyone for the really helpful replies and support.
How did other partners help when their injured person came home? I can't even position him in his chair by myself as i am not strong enough..i don't know what will happen when he comes home and there are no staff to go and ask help from.
I am terrified i will be constantly doing as he has minimal function for everyday things. He can use his keyboard and mouse thankGod but even using a spoon is a struggle- though he tries!
I feel overwhelmed already and its only been 7 months and he's not even home. He hates where he is and lives for when he can come home. I feel like i have the weight of the universe on me.

Mjc, You are not alone!
I just joined this forum about an hour ago and I am amazed at the amount of imformation and compassion here. I am the caregiver for my husband, a C-4 complete quad., I am fortunate to have help come in the mornings 5 days a week, but I did not start out that way. I remember how scared and overwhelmed I was when he was released from the hospital. We were leaving the safe haven, a place where everyone was in the same boat (we were at Shepherd Center) and coming home alone in our own boat. It was quite an adjustment, but we managed and you will too. Take it one day at a time and put your trust in God, he will give you the strength to get through. Don't be afraid to ask for help. You will find that there are wonderful people in this world and you will learn who your TRUE friends are.This WILL get easier. Good Luck and God Bless You.

Hi there...so nice to hear from you:)
How do you manage with night times? Does your husband need help to reposition then? We had a team meeting today and a person from the funding agency was there. She said in front of him that he may be too dependent to come home- what a cruel thing to say- he started crying and then didn't hear any of the positive things said..like that he might be able to come home once things were setup.

[Tetracyclone]

mjc-

People can be amazingly stupid but your husband will learn to handle stupid professionals. It is part of the skills all crips learn. He can get energy just proving them wrong.

[mcwriter]

I hope things are starting to work out for you in getting things ready for him to come home. I am sure time is moving so slowly for him as he waits for it and that it is such an added frustration for him to have all of these things going on around him for which he cannot take part.

Part of this journey is working with what you've got and finding out that though you are learning about the new limitations, what you do not realize is that there is still much that can be done within them.

His brain is obviously working, so you can help him occupy it. Get him involved with the plans for coming home, have him be a part of your decision making process. It is hard enough to learn to deal with a body that won't cooperate, but the sense of not having any control over your own life is even worse, especially for a man.

Up to now he has been the warrior, the conqueror, the hunter, the lover and taken to himself the responsibility of protector. Part of this journey his feeling that all of these things have been taken away, and he feels that he has lost himself completely because up to now he has defined himself with these things.

Your job is to convince him that he is not lost, that he is still himself and all of these things to you and it will take time. How he sees himself is not the way you see him, but he thinks you see him through HIS eyes.

Making him a part of the decision-making process will give him some sense of control over his life and a vital part of your marriage. Ask his opinions, seek his advice, put his brain to work for both of you. You can get him to take his mind off himself when you express your need for him. Part of his own identity is what he can do for you, so make him know that he can still do this!

Men do not realize that what we need from them is not what they think we need from them.

We are meant to complement each other. That is why we wives are called, "helpmeet's"---we help and we meet up, sort of like making up the difference, in filling the needs of your marriage. We each have things we bring to the marriage, where one lacks something the other has it and that is what I mean by complementing each other, because because the qualities of each of you go together to make a stronger ONE together!

I hope you might keep this in mind while you transition to bringing him home and onward. You are each dealing with new things and when you are on your own and separate from each other you can only go so far. Realize that your spouse is your other half and look to each other.

You feel you have the weight of the universe on your shoulders? Believe me, he knows what this feels like. Find your peace and rest your mind with him. Climb up on the bed and wrap yourself around him. Lay your head on his chest and just listen to his heart that is beating for you. Everything will work out when you work together.

My Best Wishes to you both.

[Carolyn Kane]

 mjc, on 08 August 2011 - 04:18 AM, said:

Hello there.. I have been searching for a support group and until now haven't been successful. My husband is a quadraplegic but from a stroke this year- but there is no-one out there in a similar situation who i can talk to so i feel very alone. I don't know if i can qualify to be part of this forum. He is 48 and is just learning to use a power chair. He has some use of one hand but needs full cares/ hoisting etc. He can't speak but is cognitively intact. He isn't home yet as we haven't had the house modified. it is all very scary and i am not sure how we/ i will cope. I wish i could chat with someone around my age who is in a vaguely similar situation. We have a 13 yr old daughter.
Cheers

Hi,
I just joined tonight. My husband is 44 and has been a quadriplegic for three years. My husband (Martin) can't move from the neck down can't speak and is on a ventilator so I guess we are roughly in the same boat. We have a 19yr old boy and a sixteen yr old daughter and I hope I can help - It won't be tonight though as It has taken me all night to register and now It's after midnight but I will look forward having a chat in the next few days - cheers Carolyn

[aedmon8793]

 mjc, on 20 August 2011 - 05:57 AM, said:

Thanks everyone for the really helpful replies and support.
How did other partners help when their injured person came home? I can't even position him in his chair by myself as i am not strong enough..i don't know what will happen when he comes home and there are no staff to go and ask help from.
I am terrified i will be constantly doing as he has minimal function for everyday things. He can use his keyboard and mouse thankGod but even using a spoon is a struggle- though he tries!
I feel overwhelmed already and its only been 7 months and he's not even home. He hates where he is and lives for when he can come home. I feel like i have the weight of the universe on me.

I remember after our accident that I thought car transfers were going to be the worst most horrible things in the world. I couldnt hardly do them without help, and then the thought occured to me that thay may mean that I'd never get to go anywhere alone with my fiance. That devastated me and I was sure it was just "how it was going to be."

It's been almost two years and in retrospect, I can say car transfers are no big deal at all. You will learn, the more you practice, what works for you and how to make things work for him. You guys will find a rhythm. You just have to keep trying and practicing. That goes for everything. Keep looking on the site for good ideas and functional ways to for him to do things around the house. Take one day at a time. Things get better as you continue to adjust to your new situation.