[Grinner]

Hi everyone My husband had his accident in August last year he is C4/C5 incomplete he has some use in his left arm but no movement anywhere else although he can feel everywhere!

We are 26 yrs old and have a 1 yr old son. Up to now he has been really positive about the whole thing but in the past week he has hit rock bottom he keeps saying he can't be a proper Dad and husband. I keep saying he is still the same guy inside and he doesn't need two arms and legs to be a parent, there are many people out there who are fully fuctional and fit to have a child.

He can move his right arm if the weight is taken off but not of his own accord if he is in his chair. He desperately doesn't want to have an electric one but at the moment that seems to be the only option.

I love the guy to bits but it kills me to see someone you love in so much pain and know that there is nothing you can do to make this better.

They are looking at sending him home in May so we are in the process of moving house and looking into carers etc. He said he would prefer a woman carer but im not so keen.

Can anyone please share their experiences, is there any one out there with the same level of injury who is myuch further down the line and has adapted to this new lifestyle.

Thanking you all in advance.

xxxx

[YYZ]

Unless you plan on taking care of him, get used to the idea of having caregivers. If you have a problem with females, looks like you are in for a tough road. You will find that a lot of men want females because it is more natural. It probably goes back to infancy and being nurtured by a mother. Even a lot of women prefer women.

YYZ

This post has been edited by YYZ: 26 February 2008 - 05:45 PM

[qbounce]

Please understand your husband is in the infancy of his injury, and as time goes on he will get stronger and become more capable of doing things on his own.
Even the most positive people have set-backs. . . expect them, but know he's still realizing and familiarising himself with his new situation. Just keep your attitude positive as well and you'll both progress through a little easier.

For the record, I've had male and female garegivers. Both have worked out, but the females are really more attentive, tend to do more around the house (basic house work, cooking, laundry), and from my experience they have more over all common sense. Granted, I've had 3 males and approx. 10 females, so the ratio is a bit unbalanced.
For what it's worth, go through an agency and try them out. If you don't feel one is doing the job you expect them to, it's your obligation to get another one.

Good luck to you

[kewlcatkez]

Grinner, on Feb 26 2008, 11:06 AM, said:

Hi everyone My husband had his accident in August last year he is C4/C5 incomplete he has some use in his left arm but no movement anywhere else although he can feel everywhere!

We are 26 yrs old and have a 1 yr old son. Up to now he has been really positive about the whole thing but in the past week he has hit rock bottom he keeps saying he can't be a proper Dad and husband. I keep saying he is still the same guy inside and he doesn't need two arms and legs to be a parent, there are many people out there who are fully fuctional and fit to have a child.

He can move his right arm if the weight is taken off but not of his own accord if he is in his chair. He desperately doesn't want to have an electric one but at the moment that seems to be the only option.

I love the guy to bits but it kills me to see someone you love in so much pain and know that there is nothing you can do to make this better.

They are looking at sending him home in May so we are in the process of moving house and looking into carers etc. He said he would prefer a woman carer but im not so keen.

Can anyone please share their experiences, is there any one out there with the same level of injury who is myuch further down the line and has adapted to this new lifestyle.

Thanking you all in advance.

xxxx

Hi Grinner,

Welcome and so sorry that we had to meet you due to these circumstances. The other posters have given some great advice. I just want to pick up on a few things really,

I am in a different situation to your husband, in that although I am paralysed, its at a lower level. However, I have severe dislocating EDS - multiple every joint daily dislocations, which although were present before, were not every day..now they are as a result of hormonal influence, an accident and the fact that it usually progresses due to the trauma of the proceeding dislocations etc etc.


When my paralysis hit, and my joints were worsening, my children were much younger, my daughter a baby and her brother 18 m older. I worried constantly that they would be "taken" from me. It didn't help that my husband was working long hours and I was alone with the children for vast amounts of time.. It all came to a head really, when I needed to have an assessment with an OT so that we could get access to funding for a Ramp and Stair lift, I had to be shoved on the Caseload of a Social Worker. She turned out to be pleasant enough yet condescending and patronising...

I became extremely paranoid that she was assuming, thinking, believing that I was an incapable mother. I am sure you can see where this is going. To cut the long story a little shorter, I think that is when I built a metaphorical wall around me, and plastered on a smile and pretended that I was alright. Sure I was disabled, but I was superwoman, SuperMUM!

If the truth is said, I had to find ways around things ( I couldn't lift the baby etc) ..and I DID. You know what the other fantastic thing is that kids take you as you are and will your husband. I have worried that my son will be ashamed of me at school ( he is 5) etc due to the chair..yet he is the opposite and all his friends want to sit on my lap etc! It may all change, but kids tend to take things in their stride a lot more than adults.

I know I am a lower level, and even with my dmulti dislocations I can;t relate, but I have also known Tetras ( quads) who have been fabulous parents and have made their own adaptions and way in parenthood. If you search here at Apparelyzed there is a fab thread on adaptive baby stuff ( strollers, cots, etc).

With regards to his feeling down and being at rock bottom. I like to think that at rock bottom there is always room for going Up not down..but thats simplistic I know. What I would say is that he and you , is grieving and mourning a loss. This is normal and he has to do it really to be able to move forwards really. It isn't fair nor is it right. I know the thoughts of not being able to play football or climb trees together or show them the dances I used to do saddens me, yet at the same time we have such a fab relationship now - we do quality things together , I DO get on the floor and play and even though I look like a stuck worm, its fun for the kids and they see me as their mum playing with them, not a disabled person on the floor looking silly.. well maybe they see the silly bit! LOL

In rehab the best parts and worst parts can be getting to know other people there. Its so early on like others have said, but sometimes you can find strength for yourself by helping others access theirs. I wonder if he has any support groups at the rehab facility. He may wish to take them up after he has gone back home as in the beginnings often, you just want to ignore anything 'disabled' relate it, be it sports, support/peer groups or getting into a wheelchair for the first time.

Which brings me onto the chair subject. Perhaps with time and an opportunity to build up strength, he will be able to push his own chair himself - perhaps a power assist chair ( search by putting power assist in serach facility) or something similar will be of help? There are also One armed drive chairs if he builds up strength and function in one arm more that the other, I have details of those and will post later.

At this early stage there is chance and hope that Spinal shock (where the gates to the nerves below injury get flooded and reflexes are lost etc, which returns when inflammation subsides -) brings a little more function ( varying degrees dependent on incomplete or complete status and injury type) Being incomplete it is reassuring that he may regain more function in the next few months, even up to 2 years or more afterwards. This may help with the manual chair. For now though, it may be that he needs to use a power chair. Have they gone through all the chairs available and the like? If you go to http://www.usatechguide.org/ and look in the chair section, itt has reviews on nearly all power and manual chairs, it may be that he finds a power chair which he is less upset about using until he ( hopefully) builds more strength and hopefully return..

Ultimately, I hope that this helps. This is a trying and distressing time to say the least. Your hubby sounds like he is a strong and positive guy who is dealing very well with the hand dealt. I hope that he ( and you, I know its hard) allows himself to have down and off days. The frustrations and down times are part of grief and its always better to express grief than bottle it up.
It must e difficult to see your husband so frustrated and limited, Iknow my husband feels helpless with my situation and the dislocations..I know I would feel tghhe same re him. As an RN I saw many couples who pushed themselves away from each other, usually the one injured or ill, as they felt that the person was staying out of pity. I have to admit that I was a little like that with my husband - pushing him away..we have been together 12 years and this was a few years ago..

I am sure that others of similar levels and situations will have better advice and experiences, but 'til then, I hope this helps,


Take care,

K

[melash]

My husband was only 26 when he got into a car accident also!I am having the same issues as you when it comes to our son!He feels as though he can't do everything he would llike to with him!But I am grateful that he is here period.My children could be growing up without a dad!His love is the same as it was when he could walk!We find putting them in alot of sports keeps them busy!As for his pain I have no opinion
I am still trying to find a cure for that myself!You have a long journey ahead of you both!I wish you happiness and love!!!Good Luck!

[Photo_Angel]

Grinner, on Feb 26 2008, 11:06 AM, said:

Hi everyone My husband had his accident in August last year he is C4/C5 incomplete he has some use in his left arm but no movement anywhere else although he can feel everywhere!

We are 26 yrs old and have a 1 yr old son. Up to now he has been really positive about the whole thing but in the past week he has hit rock bottom he keeps saying he can't be a proper Dad and husband. I keep saying he is still the same guy inside and he doesn't need two arms and legs to be a parent, there are many people out there who are fully fuctional and fit to have a child.

He can move his right arm if the weight is taken off but not of his own accord if he is in his chair. He desperately doesn't want to have an electric one but at the moment that seems to be the only option.

I love the guy to bits but it kills me to see someone you love in so much pain and know that there is nothing you can do to make this better.

They are looking at sending him home in May so we are in the process of moving house and looking into carers etc. He said he would prefer a woman carer but im not so keen.

Can anyone please share their experiences, is there any one out there with the same level of injury who is myuch further down the line and has adapted to this new lifestyle.

Thanking you all in advance.

xxxx

Hey there Grinner, I am new to all this to and would like to have someone to talk to also. I am the care provider for my wonderful boyfriend and i will let you know it is very hard and very stressful. Some days are better than others but overall it's very difficult. It would be hard for me to have a women come in and take care of him also. But i wish we would of started with someone coming into the home. I would advise you to get someone to come in the home it will help out alot. my situation is different i beleive. My boyfriend is a T11. Take care

Photo_Angel

[linda]

Grinner, on Feb 26 2008, 03:06 AM, said:

Hi everyone My husband had his accident in August last year he is C4/C5 incomplete he has some use in his left arm but no movement anywhere else although he can feel everywhere!

We are 26 yrs old and have a 1 yr old son. Up to now he has been really positive about the whole thing but in the past week he has hit rock bottom he keeps saying he can't be a proper Dad and husband. I keep saying he is still the same guy inside and he doesn't need two arms and legs to be a parent, there are many people out there who are fully fuctional and fit to have a child.

He can move his right arm if the weight is taken off but not of his own accord if he is in his chair. He desperately doesn't want to have an electric one but at the moment that seems to be the only option.

I love the guy to bits but it kills me to see someone you love in so much pain and know that there is nothing you can do to make this better.

They are looking at sending him home in May so we are in the process of moving house and looking into carers etc. He said he would prefer a woman carer but im not so keen.

Can anyone please share their experiences, is there any one out there with the same level of injury who is myuch further down the line and has adapted to this new lifestyle.

Thanking you all in advance.

xxxx

My reply does not have to do with carers, but may I say? that my daughter is a C5 incomplete also having full sensation in all of her limbs. With physical therapy and occupational therapy I have watched my daughters physical abilities increase. If your husband can gain access to these therapy's he may find that in time he will regain some abilities that have been lost.

I truly hope all goes well for you and your husband.

[Stacia]

linda, on Mar 24 2008, 03:09 AM, said:

Grinner, on Feb 26 2008, 03:06 AM, said:

Hi everyone My husband had his accident in August last year he is C4/C5 incomplete he has some use in his left arm but no movement anywhere else although he can feel everywhere!

We are 26 yrs old and have a 1 yr old son. Up to now he has been really positive about the whole thing but in the past week he has hit rock bottom he keeps saying he can't be a proper Dad and husband. I keep saying he is still the same guy inside and he doesn't need two arms and legs to be a parent, there are many people out there who are fully fuctional and fit to have a child.

He can move his right arm if the weight is taken off but not of his own accord if he is in his chair. He desperately doesn't want to have an electric one but at the moment that seems to be the only option.

I love the guy to bits but it kills me to see someone you love in so much pain and know that there is nothing you can do to make this better.

They are looking at sending him home in May so we are in the process of moving house and looking into carers etc. He said he would prefer a woman carer but im not so keen.

Can anyone please share their experiences, is there any one out there with the same level of injury who is myuch further down the line and has adapted to this new lifestyle.

Thanking you all in advance.

xxxx

My reply does not have to do with carers, but may I say? that my daughter is a C5 incomplete also having full sensation in all of her limbs. With physical therapy and occupational therapy I have watched my daughters physical abilities increase. If your husband can gain access to these therapy's he may find that in time he will regain some abilities that have been lost.

I truly hope all goes well for you and your husband.

Hi Grinner,

I am so sorry about your husbands accident, and what you are both going through. My husband has a SCI at the C-2 level. I didnt meet him until a year after his injury, so I have no idea what life would have been like with him before. When I met him there was no idea of romance at least on my part, but we got to be friends and things just took off from there. We were together for five years until I convinced him what I knew after a year. I just love him and dont want to live without him. He had to revamp his thinking that he was still attractive and desireable, because he lost a lot of self image with his injury. I think being so dependent on others can really do a number on men's phyche. We have been married for 2 years, and the only problems we have had are due to medical issues. We are closer than ever, we have a wonderful sex life, and we are now trying to have a baby. It has taken him a long time to come to believe in himself and admit he wants a child, but he has lots of fears about that too. I know he has lots of reservations, but he is doing this for me. I know maybe I am being selfish in this, but I just want a part of him so badly. I know after this last year that his health has lots of things that can go wrong and when we were really worried that he was not going to get better this time I got so scared.

One thing that he has insisted on from the very beginning was that I do not do any of his personal care. I can do suction on the vent, help turn him, and I could step in and do anything if I had to , but he has a really good crew that have been with him for years so we are in good shape that way. Most of his staff are women, but he has 2 men, and they have worked out very well.

My husband does use a power chair with sip and puff, but there isnt really any choice in that. He does not spend much time in his chair now since he has had such a problem with pressure sores. He has a good job that he does on the internet, he has an amazing computer program that lets him type and communicate and run an environmental control system with his eyes. We live a quiet life with good friends and neighbors who are good to us and he is comfortable with. His father was widowed last year and he is living with us and it is such a boon for all of us.

I wish I had some words that could make things easier for you, but if you ever just need a shoulder, or if your husband would like to talk with my husband we are here for you. I will be thinking of you and your family and holding good thoughts.

Love, Staci