Hi everyone, first post here. My Dad recently became paralyzed from the T4 down (recent, as in last week) from a tumor that ended up growing through his spine. I've been doing a lot of research and wanted to reach out to the community here to ask for some advice or maybe find someone who might relate to my Dad and be willing to talk to him.
To sum it up, my dad is very much the cliche dad, or some might say "man's man." He's always been able to fix things, build things around the house, go out on his boat (even waterski in his slightly younger years), grill burgers or steaks for dinner, cut down trails in the woods with the chainsaw, you get the point... He's still quite young, only 57, and up until this issue he was quite healthy and active. He really hates the idea of people helping him as he's always been the one to be the helper, and now the roles are reversed.
Does anyone have any advice on how to regain a sense of that masculinity? Any tips, tools or gadgets you might recommend? And if anyone here feels like they can relate a lot to my Dad and have already been through the recovery process, I'd love to chat more in depth with you and maybe put you in touch with him. He's a bit down in the dumps and needs some motivation.
Hi samrp. Glad you found us. I'm an older female. Until a car hit me three years ago, I would have climbed a tree and cut off a limb with my chainsaw. It's been frustrating and expensive to not be able to do this myself since my accident. I encourage your Dad to come on our forum and make friends here. Sam, I'm so grateful for the use of my hands, arms, eyesight, and hearing that what I "don't have" has become more bearable to me. Now, the frustration of trying to get other people to do the things that I need to have done is the worst thing about being disabled. It will probably take a while for him to remember his "other strengths and abilities" that make him useful. We just have to develop 'those'. I'm also glad that this didn't happen to me in my youth. I got to square dance, do cartwheels, drive anywhere I wanted to go,...etc....experience life as an AB (able bodied) person. And my life almost ended March 15, 2014. So, whatever I get to do now is a special gift. Your Dad is grieving his loss. It will come and go. And I don't think it will ever completely be over...until God makes us whole again someday.
I would like to welcome you to the forum, and thank you for being the loving son that you are. I think vintage said more and better than I could have. Just continue to be there for your dad and let him know that he will never be a burden. Let him know that this is just another one of life's adventures. And that he has always succeeded all of life's other adventures.
I know that feeling he has very well and the frustration it brings about. Still the role must now change. its good to focus on what you can do not what you cannot. he still has much to offer. he still can be a good organiser, manager and yes delegate work to others, advise them, show them how its done and quality assess to. this can be done from building a house to organising a family BBQ. i am a T11 amd completely chair bound yet i work full time teaching plumbing and electrical installations to post 16 students. i am also a building contractor currently involved in two personal build projects. yes i admit it is frustrating asking for help and paying for work you yourself teach to others. For over 20 years i had my own business as an electrical plumbing contractor. tools workshop all is still there. While local people protest against these African refugees coming here looking for work i see them as a blessing. built and completed a 6 story building with their help..
You've found a good place to come for advice, samrp, Most of us here have been through the grieving process your dad is now experiencing, and it's a depressing and frustrating time (for everyone, not just the person who was recently disabled). I was 38 when I was paralyzed, with 11 and 13 year old daughters, and there was an awful lot I was suddenly unable to do for them and with them. It took me quite a while to stop focusing on what I couldn't do anymore, and focus on what I still could. That realization propelled me forward, as it will your dad when it comes. 21 years later and I'm now 59 and I still get frustrated. But I've been married to the same man for 37 years now, have two lovely grandchildren, work full time as college professor, and just bought an off road wheelchair! This weekend I'm hoping to be on the beach for the first time in 21 years in that chair. My best advice to your dad would be don't waste too much time looking back. Enjoy what you can while it's here.
(and by the way, it's great that you're there to support him. That's more important than anything else).
Post by kilg0retr0ut on Jun 29, 2017 5:14:27 GMT -8
Samrp, I'm still in the process of accepting my limitations, and still testing them. I think its early to worry about much other than his physical recovery. Many here can relate, please ask him to join, when he's ready.
May I gently suggest you begin by redefining what you want for your dad. Masculinity cannot be taken from him. While that may be a meaningful label for many, the very vagueness of it can lead to trouble accomplishing goals. that is what your dad has loved and fostered in you- an ability to accomplish goals. He enjoys having the physical power to order his environment.
AT T4 he may not end up with a lot of physical power if the injury is "complete" but he may also get some capability below that level. At this stage you all must "wait and see". So 'physical power' becomes, more than ever, the ability to work smart rather than working hard.
I am a quad with weak hands. good arms, some torso and leg control but pretty weak. I used to restore old houses. I'm very female but the power to do things with my hands mattered a lot to me. About a year after my injury I was home and trying, with a helper, to get our home accessible and fix up a lot of things that had been unfinished. I remember when I was able to get out the miter saw and at least cut trim pieces to fit. That felt good. Then when I finally managed to hold the electric drill in my right hand- whoa! What a rush of good feeling- that was "me"!
The first thing your dad needs to get back on track is to learn to take care of himself. Basic independence should be attainable. Focus on learning to do things in a new way. Forget about how he used to do things. Those thoughts are just a bad day in the making. Life as a T4 can be another fascinating challenge for a can-do guy but it may take some time for him to find that attitude.
The first things he needs are the right tools for the job. Don't let hospital PTs or social workers have the last word on what wheelchair he should buy. Don't let insurance have the last word. he needs an expert seating evaluation then a good ultralite manual wheelchair. There are many on the market and run at least $2000. Second he needs an excellent quality cushion. The seating specialist will advise you on that. People who sit all the time are in danger of skin breakdown- what you know in hospitals as 'bedsores'. There are high tech cushions that will usually prevent problems. Few of us get the right thing first off but if he suffers any pain or problems , get him to an expert fast. His first job as SCId is staying healthy and feeling good in his chair so he can get back to living. He needs the right tools for the job.
Insurance will rarely pay for expensive cushions until there is a history of skin breakdown. How smart is that ???!? Once there is a sore they tend to recur so if at all possible crape together the $ for a decent cushion. I'm talking $350 to $500. Or he may be like me ad feel pretty good in a foam and gel cushion for $250. Once you have a good idea what he needs, if insurance will not buy it get it off the internet, just make sure your measurements are correct. If his back is very weak (likely) a good backrest with lumbar support will help.
i will stop there. There is a lot I can suggest but unless I know you want my thoughts I won't waste our time. if you think I can help, send me a private message.
Stay strong. You might need to be the strong one for awhile but he should bounce back as long as you focus on his regaining his ability to shape his world- his personal power.
Definitely getting a good cushion is important. I have a Roho High profile cushion, and I like it. I'd had sores on my bottom twice in nursing homes,...sores so bad that they sent a wound care nurse to put an awful three-day-bandage stuck to my bottom. Yet,...wait for it,...that first nursing home didn't even loan me a Rojo cushion. They just left me in bed for a couple of weeks. Come to think of it, they didn't loan me any kind of cushion. The hospital had given me a huge, thick piece of uncovered foam rubber, unwieldy, that I had no way to keep on the chair underneath me. Yes, looking back, they probably gave me that to cover a check mark on a form somewhere...Does patient have suitable padding? Yes! Oh, yes. She has a lovely piece of fluffy foam rubber that looks like it came off of a moving van. Check that box "yes". Then another nursing home, due to sores, loaned me a Roho cushion and a matress with a circulating air pump. As soon as the sores healed over they took away the special matress...took it bed and all, rolled it down the hall, and put it in an empty room, and gave me some other bed. When I left for another nursing home, they kept the Roho cushion. I suffered excruciating pain in my next nursing home for the next year, due to having no cushion at all, and later an inadequate gel cushion. Now, although I have a Roho cushion, I also have scar tissue on my poor little mistreated bottom. It hurts all the time because I have to sit on it all day. The medical system is very cruel in that, as Tetra mentioned, government insurance won't give you a good cushion until you have skin breakdown. But after the sores, your skin will never really be the same, even if it "looks okay".