Panic attacks and dreams of wheelchairs..

Discussion in 'The Watercooler' started by Marcie Mac, Aug 26, 2007.

  1. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    SO's visit to the doctor last week wasn't very good - he wants him in the wheelchair - now - his spine has collapsed a little more, he is in a lot more pain. But.. He is still walking around - last night at auto racing, his passion, he almost didn't make it back to the truck and was in agony most of the night.

    And me, a nightly thing, I find myself defraging the computer at 2:45 in the morning, or just staring into space, trying to formulate the "game plan"

    I have never had a darn game plan in my life - my difficult child attitude to life in general "just winging it and see what happens" is failing and I am absolutely miserable and lost without it - its been my survival skill all these years. Thinking too much seems to be hazaradous to my health - the more I think the more of a panic I get into. If this is a "you get older and get wiser" kinda thing, let me tell you it absolutely :censored2: eggs to ones who live on impulse. Its not natural

    I am up at 3:00 this morning now thinking about how am I gonna get him in the shower when he can't walk anymore. Should I rearrange the bedroom now so he is closer to the bathroom. Where can I find directions on the internet to build a ramp for the front door. Should I go in the spare room where that darn electric wheelchair is and practice disassembling it and practice using the truck ramps to get it in the truck.

    I know when the quality of life for him gets too bad what he is going to do. More stuff that weighs on my mind. I know the doctor visit is in order for a Paxil rx - I just even hate having to think about being drugged to get thru each day. I can go months without it, till I start thinking too much..


  2. Ephchap

    Ephchap Active Member


    From one who "wings it" to another, I do understand the scare of trying to formulate a plan. I've been dealing with an aging mother who is now seeing people that aren't there. Try telling your mom that she can go to bed and not to worry as the kids she thinks are in her bed taking up all the room won't mind if she sleeps in there. Ughhh.

    Sending many hugs and good thoughts your way. I can't imagine seeing your SO in so much pain, and the fear of what is coming next.

    Hang in there, my friend. We're here to bounce ideas off of. As for building a ramp, I'm sure there are many instructions online, or there must be places that do that, that could offer any suggestions.

  3. totoro

    totoro Mom? What's a GFG?

    I know the wing it feeling... husband has severe Ankylosing Spondylisis and Spondylosis, I just feel like we are waiting for the day his spine is completely useless...
    So I don't think about it...

    Anyway we had to build my husband Grandma a wheelchair ramp... not to bad.

    Sometimes day by day is all we can do.
  4. Marcie Mac,

    My thoughts and prayers are with you and your SO. Sometimes, though, moving to using a wheelchair makes life a little easier. My difficult child periodically uses one and he is in much less pain when he does. We've made some simple changes around our house. When he needs to use the wheelchair, his bedroom moves downstairs and everything moves nearby to him. (That being said, our next house is going to be a one level house)

    Occupational therapists and physical therapists are great at working with this sort of thing - and it's well worth the cost of a one time home visit by one. (They literally have thousands of tricks up their sleeves!) Your doctor may be able to prescribe this and your insurance usually will cover. Workarounds can be expensive and/or creative. For example, for the shower - the cadillac solution is the roll in shower with no threshold - but you can also use a shower chair as long as SO can make transfers.

    Due to the Americans with Disabilities Act, public places have been forced to become accessible. Things are certainly not perfect for a wheelchair user, but they are much better here in the States than they have ever been before. You can purchase lifts to get the wheelchair into the truck - the Occupational Therapist (OT) or PT can tell you about them. Additionally, there are usually community groups who may actually build your ramp for you (here there is one called "Ramps for Champs") ; and some Habitat for Humanity groups do this as well. Again, a good Occupational Therapist (OT) can help you make these contacts.
    I remember how disheartening it was for us when we bought difficult child his wheelchair, but after we reached out for help things got much easier. There are some pretty smart folks out there who know how to make using a wheelchair much, much easier.

    Keep up the faith!
  5. Nancy

    Nancy Well-Known Member Staff Member


    We had to deal with this with both my mom and dad and husband's mom. Mom was bedridden for seven years so we had a lot of figuring out to do. She had cerebellum degeneration which is very similar to Lou Gehrig's disease so she lost all ability to get around herself and even breath on her own.

    I would take this in small steps but although it's painful you probably should start to make a plan so it doesn't hit tyou at once. If he has an electric wheelchair figure out where that will get him. Can it get him to the shower and then just help him to a stool inside the shower where he can shower with a hand held shower head? Are there modifications you can make in your home to allow the wheelchair in places he needss to go.

    We had to move mom into the dining room and set that room up as her bedroom because we coulsd no longer get her up the stairs. We also got a lift that helped us lift her from the bed to the wheelchair. You can also get one of those lift chairs that lifts to a standing position and insurance will often cover it.

    There are a lot of things on the marketplace that helps now that weren't there years ago. Get some ideas fromt he Internet.

    I know you don't want to think about this but I know from our situation that it helped to have time to prepare somewhat.

  6. busywend

    busywend Well-Known Member Staff Member

    Marcie, I am so sorry to hear this. I know the anxiety and panic well - just this year it got unbearable for me. I wish I could just turn off my brain sometimes.

    Looking for a local agency to help with the ramp sounds like a great place to start.
    I hope SO starts using the chair so he does not have so much pain.
  7. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh Marcie...

    Im so sorry for all your worry but I know it well. We wait here for the day when I am no longer able to get around. We know it will come one day. I already have a walker I use sometimes. I feel so stupid and old when I have to Im gonna get me a jazzier one so I dont feel so weird!

    Can you get a shower chair? Or even better yet...have you seen those new European bathtubs that you walk into or get put into and then the door shuts and they fill up? OMG...they look wonderful! They can even come as a whirlpool.
  8. flutterbee

    flutterbee Guest

    Not a planner here, either. I wing it, too. I'm sorry for all you're going through. My best advice is to tackle only one thing at a time...whatever is most pressing...and put the other stuff on the back burner. Easier said than done, I know, when you can't shut your mind off.

    I really like the PT idea from One Day At a Time. Someone that can tell you - and put in writing - what it is that you're going to need and when and how. It will take a lot of the guesswork out.
  9. Suz

    Suz (the future) MRS. GERE

    I'm so sorry to read this, Marcie :sad:.

    Big hugs,
  10. slsh

    slsh member since 1999


    My heart aches for you.

    Absolutely, I would rearrange the bedroom now, and I would definitely start playing with- the wheelchair and truck now. Much harder to learn how to do when it's occupied. :wink:

    It's a fine balance, I think. I've never been a planner either. We just kind of have taken things as they've come. Fortunately, husband is a disgustingly optimistic fellow who's motto is "everything will work out". Used to really tick me off because I'd be working myself into one royal tizzy over whatever the latest disaster was, while he was just being so totally calm about the inevitable positive outcome. And he's usually right (relatively speaking).

    I haven't given a great deal of thought about the more practical issues of caring for Boo as he has gotten bigger and I've gotten older. I'm facing some of the same issues now and not doing well with them. Did hire a PCA last week to come in and help me get him into bed while husband was out of town, but I have to tell you, it was *so* hard to do (pride, denial? I don't know). Reality is, I simply cannot continue to safely lift a 120-pound man with my back. But... really bites.

    Boo hasn't had a real bath in a couple of years now. We bathe him in his bed. No-Rinse shampoo has been a real blessing - does a great job. But, again, I remember many years ago saying I would *never* use that because I would always be able to get him in and out of the tub; was actually offended when we first were trying to work out the bathing issues and someone suggested it.

    I think an Occupational Therapist (OT)/PT evaluation is essential. If there's a rehab hospital near you, I think they might be the best resource. Bath chairs are good for people who can sit up independently or with minimal help. I would absolutely invest in a lot of very sturdy hand rails in the bathroom - tub area but also toilet and sink areas.

    Things change, Marcie. I think it's good to explore the options and have several very loose plans laid out. But I also think it's important to have that ability to fly by the seat of your pants. At least in our family, any firm "plan" we've tried to figure out has always been blown completely out of the water by a twist of fate.

    A gentle hug to you.

    Wheelchair ramps - if it's a power chair, it needs to be an extra sturdy ramp. We've had 3 ramps - one built by a neighbor who was a carpenter, he did a great job. One husband "built" for the home we lived in when Boo got his first chair - looked like the leaning tower of Pisa but the one really great thing husband did was put astroturf the entire length of the ramp which kept the tire tracks to a minimum in the house. The one we have now is hidden in our garage and is functional but *hideous* and probably completely out of code. Can you guess who built that one? LOL. :wink:
  11. Star*

    Star* call 911

    Dear Winger,

    Sorry to hear about the pain SO is in. My DF fell through a ceiling 6 years ago on a construction site and in one day our life was changed forever and he is now perm. disabled. I would have to include myself in your wing it program because neither of us were prepared for all the changes that go with back surgery and the ongoing recovery. HOWEVER;

    We managed, we're making it and somehow I belive Love will find a way. (For me? It was love, therapy and an occasional 'fit' into a pillow, or a good cry on the back steps with the dog) Thank goodness it didnt make me a bottle baby- I'd have to be saying HI, my name is TLR and I'm a whine/wine-aholic.

    Just wanted to let you know you're in my thoughts and prayers.
  12. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Thanks for the kind thoughts - I will ask at the next Dr. appointment about the PT and Occupational Therapist (OT)- thankfully my house is only a one story - no steps in the front - only about a three inch riser from the walkway to the porch and another three inch riser to get in the door - my bathrooms are realllly small - I don't know - I think people must have been really thin and short in the 60's cause the tub wasn't made for anyone to sit in that currently lives here - shower is one person size and its a step in.

    I have had absolutely no success today with suggestions about moving the bed so he can be closer to the bathroom - nor have I had any with the suggestion that he charge the wheelchair and start using it. Dan got upset, said I was nagging - says SO will do this stuff when HE is ready and its obviously not NOW - let him do his thing while he still can. I understand - but am sure you all know its pretty much a GUARANTEE Dan will not be in the vicinity when this 6'3 225 pound man starts to go down and I am the only one standing there - its how my life works..

    I have checked out the tubs Janet, thanks for that link - how I would be able to pay for one is the next hurdle - I know Ca may spring for the truck hoist for the wheelchair - that thing weighs a ton, even taken apart. I will check to see if they have any programs available for making a house disability accessable.

    I know him well enough that putting anything into action is for him a sign of defeat - I am sure I would not be handling it as well as he does - foot surgery in April for a fybroid tumor at the bottom of my foot had me on crutches for a few weeks and I was definately not a pleasant person to be around. Its growing its little twin on my other foot but I have had it with the crutches thing for a little while and right now its the least of my worries.

    I went out and bought myself a bottle of Kalua today- I am not a drinker by any stretch, but maybe it, along with some warm milk, will help with my 2:30 A.M. woe is me can someone please turn of my head now so I can sleep pity parties.

    Thanks again for the hints, pointers, links. I never thought of any of his - just too brain dead with the stress I guess.


  13. tiredmommy

    tiredmommy Site Moderator

    {{{Hugs}}} Sorry about all this, it's very disconcerting to watch someone you love go through this sort of thing. You may not be a planner but you are a doer. Call the equivalent of your local disability advocate office and ask for a meeting to discuss the changes your lives are going through. Call SO's doctor and ask for leads on organizations that can assist in making home modifications. Let others help you with the planning and I think you'll do fine.
  14. nvts

    nvts Active Member

    Hi! Sorry to hear of all your SO's troubles. You may also want to Social Security, as well as the Americans With Disabilities. Quite often there is funding to help you make the changes to your home. Also if he's receiving disability payments, there can be coverage there too.

    You can also check with United Cerebral Palsy and find out if they can point you in some direction. They will also know if there are organizations that help.

    Is your SO a veteran? If so, call the VA, VFW (Veterans of Foreign Wars), or the American Legion. Does he belong to any clubs (Elks, Moose or any other antlered animal) lol? If so, they may have programs as well.

    Don't know if any of this helps - hope it does!

  15. Hound dog

    Hound dog Nana's are Beautiful


    It can be very hard admit you need help. I was so darn frustrated with Travis over the whole Lets walk out in traffic and see if they can not hit me thing I thought I'd strangle the kid. FINALLY got into contact with visually impaired services in our area. Got him the white cane that hopefully will prevent someone from running him over while he's out walking..... And the boy wouldn't use it!!!! And it wasn't just the cane, he wouldn't use the hundreds of dollars worth of equipment they gave him either. (they gave it to us free by the way)

    Called the Occupational Therapist (OT) that had come to train him with the cane and asked if he had any ideas. He told me Travis would have to come to accept it on his own. And he would eventually, because he'd be forced to.

    This past year he's been taking his cane wherever he goes. I haven't said a word. Scared to jinx it. (now I just pray the people in this town are smart enough to know what a white can means)

    I'm so sorry you guys are having to go thru this.

    Sending many warm ((((hugs))))
  16. timer lady

    timer lady Queen of Hearts


    Keeping fingers crossed that you find some answers soon. You cannot plan if you don't have the answers.

    This has got to be so very emotional for you & SO. What a hit.

    Take care of yourself. Find in home help so you can get your surgery done.