Although definitive statistics about limb loss are hard to come by, there is considerable evidence that: *
- There are one and a half million amputees in the United States and 3,000 amputations are performed each week in this country,
- Amputations are relatively equally distributed between men and women,
- There are nine or ten leg amputations for every arm amputation,
- About 55,000 amputations are performed in this country each year for circulatory disease alone, and
- Six in every 1000 people in this country has lost a limb.
Though these statistics are scary, the reason for mentioning this, other than to help satisfy whatever curiosity you might have about how you fit in, is to illustrate that there are many like us out there. Despite the fact that you may not remember seeing any amputees, the chances are you have seen many and simply haven't noticed either because you weren't looking for them or they used prostheses and just weren't noticeable. You really are a member of a rather large group. The important thing to remember is that thousands of people who are also members of the group lead happy, productive lives and you can too.
Going home - Going home may be the most stressful experience you'll face after the amputation. You've been in a hospital, a protected environment for some time. You've had physicians, nurses, therapies around to assist you, give you pointers and overall, aide you in the transition you're about to face. There you've had the protection of them in the event you had to go the bathroom, were in pain, in the event you fell, you knew they were there to help you out. There was always activity and you probably didn't have too much time to think about your situation while you were in the hospital. You had people to take care of you. Your day was highly planned. Your meals were brought to you.
Now you are home and it suddenly becomes painfully clear that you are now on your own. I can remember sitting in the car in the front of our house, dreading the thought of having to hop on one foot with my walker through the garage, through the laundry room, down a hall to the living room and knowing once I got through those obstacles, I had to face the rest of day. I had hounded my doctor to let me go home, promising I was ready and able to face anything. But sitting there in the driveway, I was ready to go back to the hospital where I felt safe.
Going home may feel like a step backward, but in reality it's a step toward healing. Not to say you don't have doubts, because you will! You may feel there is no one to take care of you. Your days are not planned. You now have a lot of time to think about your situation. What will you do? Who will take care of you? How will you do the things you have to do? How will you cope? You may suddenly feel quite disabled.
If you have family or friends that can assist you, don't hesitate to call on them. They will probably be delighted to be able to help. If you are reluctant to ask for help, ask for it anyway. Just tell yourself that it's only for a short time and you'll learn how to take care of yourself soon.
If you don't have family or friends to take care of you in these early days, make sure before you leave the hospital that you find out from the hospital social worker what community resources are available to help you. If a social worker doesn't come to you while you're in the hospital, demand to see one. If the one who comes doesn't seem to know the answers to your questions, demand to see another one. This time in your life is too important to be retiring and compliant. This is your life and you have a right to competent advice!
What do you do when you don't have any help? You've no family close by, your insurance company is getting the hives from the costs they have to cover. You aren't eligible for any assistance through your state's agencies and the only thing you do have is an agency that allows a Nursing Aide to come to your home twice a month to help you bathe. Twice a month? I think at the end of the two weeks I wouldn't even want to be around myself!!!
Know what? It's real! These things do happen....
So what do we do about it? There isn't much we can do but offer support, and keep searching for some way to get by. It's those LadyAmp's that need us the most! What about a Amputee Support Group in your area? They may know of someone who can volunteer some time in between the agency Aide visits? What about Meals on Wheels? They can bring you at least one hot meal a day. Make phone calls, to anyone and everyone you can think of to find the help you need!
Learning To Do Things - Even if you have people at home to help you, you might still feel 'helpless' if there are lots of things you can't do for yourself. After all, you were independent most of your life, you got used to it, and you don't want to stop now.
The best advice that can be offered is to have patience-a lot of it! That will be very hard for you to do. You will become frustrated. You will become angry. You'll cry mountains of tears. But you have to remember that learning to do things for yourself may take some time and struggle, but you will learn. Everyone else has done it and you will too. If you lost an arm, you may have trouble getting your teeth as clean when you brush them as you used to, but brush them anyway. If you lost a leg, you may find it not as easy to get around the kitchen and make your dinner as it used to be, but make your dinner anyway and understand that with every dinner you make it will become easier and faster. You may be stuck in a wheelchair for a while, but learn to do the things you need to do while in it.
If you lost an arm, probably no significant home modifications will be needed. You will learn eventually through talking to other arm amputees, by looking at arm amputee sites on the Internet, by subscribing to the arm amputee list server, and by being creative in your own problem solving that there are ways to do almost everything with one hand if only one is creative and clever. There are many simple things that are available commercially that will make your task easier.
If you have lost both arms, you should hurry to a prosthetist and then, with your hooks, you can learn to do almost everything you did with your hands. There are three things that will enable you to accomplish this. They are patience, patience, and patience.
If you lost a leg you will most likely have problems getting around the house, and you can expect this. You may have problems going upstairs to your bedroom, in which case you should sleep on the downstairs couch until you become more comfortable with going up and down stairs. Ask your doctor if you can use your fanny to get up and down stairs. I did. Not that I went up or down too many stairs at one time, I didn't. But to go up 2-4 stairs it works well. To get yourself back on your feet, use your walker by laying the back end of it on the floor, and using it as a leverage to get you onto your feel again. Check with your doctor to make sure this is safe for you to do!
You may have problems getting on and off the toilet seat, in which case you should get a commode with a higher seat or a toilet seat extension until you learn to do without them-as you certainly will. You will become tired more quickly. So stop and rest.
If you use a wheelchair, put ramps in, although you may think they may only be needed temporarily. If you start out with a wheelchair you may graduate to crutches, a walker or a prosthesis, in which case you can remove the ramps. If you decide to use a wheelchair permanently, keep the ramps, widen doors if you have to, and do anything else you need to do to make your house accessible and comfortable for you.
What happens if you end up on the floor from a fall? Wow, that's a loaded question, because there will come a time as an amputee that you will fall. My prosthetist told me early on it's not 'if' you fall, it's 'when' you fall. And in my case, I personally think it held me back in a lot of ways. My fear of falling was always on my mind and the only fear I had other than having to go through more revision surgery.
If you've read my Journal, you know I fell the first night home from the hospital. I held onto a record of two and half years before I fell again, a major obstacle to overcome for an amputee. But, getting up off the floor doesn't always have to mean you got to the floor by a fall. What if you want to just sit on the floor?? For some reason I wanted to sit on the floor, but getting back up into my wheelchair or back onto the couch kept me from venturing that far down.
It wasn't until one night I got down onto the floor to play with our dogs and when it came time to get back up onto the couch, I panicked. I didn't have a prosthesis so I couldn't use that to get me back up but I suddenly remembered, I did have the couch. I scooted over to it, sit with my back against the couch, and lifted myself up onto the seat cushion. Not difficult at all. But.....
What if you don't have the strength in your arms to get your butt off the floor??? lol...lol....there was a time when I wouldn't have been able to do that, believe me!! But, if you use a walker, you have a handy 'hand' to help you back up.
I never know how to explain to someone, without showing them, what I mean by this explanation. I had a LadyAmp sister ask for an easier to understand description, and that's all I needed to try and explain this better! So here goes:
I then show you in Fig. 1 where the Support Bars are on your walker. I've never seen a walker that didn't have the Support Bars, so I'm guessing (and hoping!) you have them on your walker.
By placing your walker on the floor, with the Support Bars touching the
floor, you can use the walker to lift yourself up. The legs of the walker are made to withstand your weight, so don't worry, you
can use it safely. If you're a BK amputee, you shouldn't have any trouble using your knee as a brace to stand, but I'm not sure about an AK. To be on the safe side, try it with someone with you as a safety net and precaution. Of course, whenever you attempt
something new, ask your doctor if he feels you'll be safe trying to do this!!
Hopefully the image to the left makes sense to you. If not, just let me know and I'll try and explain it better!
Family and Friends-Getting and Giving Support
Support from family and friends is invaluable. But don't be surprised if a family member or a friend is unable to cope with your amputation. It happens. For some, the thought of a loss limb is 'gross' or unbearable and seeing it may be hard for them. Don't be upset. Adjusting to your amputation may be the hardest thing they've had to deal with. So give them time and patience.
Your family and friends can help you do things you haven't yet learned to do for yourself but they should not do everything for you. It may be difficult for them always to find a happy medium between being over protective and seeming to be insensitive. You can help them by making it clear that if you need help you'll ask for it, and by telling them it's okay for them to ask if you need help, as long as you have the right to say 'no thanks'.
I've come across something that may happen to you. Around family members and friends, the words amputation, amputee, stump and others, may be diffcult for them to hear and say. Have a sense of humor when it comes to these words and let your family and friends know those words are fine to say, especially since they are true. Banning the words from conversation will only make the sitation more difficult for those who love you to accept it if you don't allow them to be spoken aloud.
In general, patience and time is on your side. Especially time. As the weeks pass, you'll adjust to your new way of life and the new way you have to conduct your life. As the months pass you'll get a prosthesis to enable you to walk. And as even more months pass you'll find with the prosthesis you'll be able to do more and more which will give you more confidence in yourself and your ability to accept this new way of life.
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