Last post Fri, May 16 2008 1:47 AM by Becky. 12 replies.
Hi everyone,
I myself am not an amputee. My dad however has had both of his legs amputated above the knee whithin the last 5 months. In Dec he was having severe leg pain inhis left leg. They noticed that his circulation was terrible and at that point there was nothing they could do to save it. They did the amputation on dec 3rd and at that time notied that his right leg was also having a low level of bloode flow. They decided to try and fix the right leg and hope for the best. Everything looked great after they tried to fix it and after a few infections in his amputated leg he was sent home, i beleive it was Feb. Only 5 weeks after being home the same pain started in his right leg. We knew right away what was happening. His right leg was also taken 4 days later.
He is not coping as well with BOTH legs being gone. He did so great the after the first surgery. He thought he would still walk and was fine. After, the ins ran out and they sent him home less then 14 days after his surgery. Gotta love insurance complanies right?
Now he is home and its just him and my mom. She has had several back surgerys and is having a tough time helping him with the things he needs help with. Their home is now really equiped for wheelchair access. (doors and things) Its just a mess. His amputations were rather high and hes having some balancing problems. Hes scared to death of falling or being dropped and this is keeping him from wanting to shower or use the restroom. We dont have a car thats equiped for a scooter and we are so afraid of dropping him while putting him in the car. (hes very afraid of this too) Hes using a hospital toilet that he keeps next to the bed. He doesnt have a scooter yet because his INS is giving us a hassel.
He is going through some very obvious deppression and isnt eating well. Hes lost about 80 lbs. Hes frustrated he cant do things easily and very sad. He does make jokes but I know they are just to make us feel better. He used to help coach his grandsons football games and never missed a baseball game. Im just at a loss. I dont know how to help him. I dont know what to say. hes always been so active and invloved. Its so hard for me to see him this way.
I need advice. Anything I can get. Maybe some tips on helping him do everyday activities. Help on what to say, or how to get him out of the house. I know the depression is normal after something so aggressive, but what can we do? HOw can I help him? I didnt know a better way to get these answers then to ask others in the same possition.
Thanks in advance for anything you can tell me. Im so sad and lost. I cant imagine how he is feeling. I would love comments to this post.
I would also LOVE any info on other message boards for amputees or loved ones of amputees. Informational websites, basically enything you have. Im not coming up with much in my searches
Sheila, I am so sorry to hear about your Dad. I do feel you have come to right place for advice and support. We have such a wonderful community of members and I know someone will comment on your story and lift your spirits.
Stay strong!
Sheila: I am a bilat TMA (no toes either foot) so I can't really comment on specific aspects of being a bilat AK. However, much of the amputee experience is common among all amputees - depression being one of those things. The other thing I can do is identify some sources of information and other forums specifically devoted to amputees, their families and/or caregivers. For this post, I will focus on the info sites and other forums.
First thing I would do is to contact the Amputee Coalition of America (ACA). They have a number of on-line resources and can help you locate others. Here is their website address: http://www.amputee-coalition.org/index.html and their phone number: 1-888-267-5669. One of the programs I would definitely check out is their peer visitor program. This is a program that will match an experienced amputee with a new amputee and/or their family or caregiver. Either you or your father may request a peer visitor and you may request for your father, just get his permission. The ACA will identify an amputee with a similar amputation, in this case probably a bilat AK, who is about the same age as your father. Depending on your location and the location of the peer visitor, the visit can be in person, by telephone, or by email - your choice. The visitor may visit only with your father, with both of you or all of you depending on your father's choice (if he is the requester). You and/or your family may also request a peer visitor which may be separate from or addition to your father's visit. Your father may opt not to have a visitor but you still can request one. I would strongly recommend the visits; talking with someone who has gone through it can really help to not only answer questions but also to help allay concerns and worries. ACA trains and certifies their peer visitors so each has a certain basic level of knowledge. They will not do stuff for your father, you, or your family but they will help you identify resources, get answers to questions, and just be there as support. I am a certified peer visitor with ACA so I am familiar with the program and what it can do.
ACA had an on-line support program which they have discontinued and replaced with an on-line forum. To participate, you must be a member of the ACA. Non-members are supposed to be able to read the discussions but cannot post or respond to posts. It is new, has very little in terms of discussion at the present time but it could be an excellent resource in the future.
I participate in 3 or 4 on-line forums that are specifically directed toward and limited to amputees, families or caregivers, and prosthetists. As a general rule, these sites/forums have a broad spectrum of people with a range of amputations and a great deal of experience. Because they are limited to amputees or those who work with or help amps, the discussions are very focused and specific to all things related to amputation and living with it. These are in no specific order but are sites that I personally have found to be very supportive, have very knowledgeable people, and provide good information.
http://www.amputeeresource.info/index.php - a relatively new site regenerated from an older site. Small number of members but good diversity with really good support. Site is owned by a prosthetist who works for the VA in Minneapolis. Members are primarily in the US but some from Canada and overseas.
http://cybermessageboard.bizland.com/amputee/ - really good site with wide diversity of members from all over the world with a wide range of amputations. Lots of very good information and knowledgeable people here. Guy that runs the site is out of Vancouver BC. Some very interesting people are on this site.
http://amputee-center.com/forum/ - site is owned and run by a prosthetist. Membership is larger than the first site but smaller than the second. Many members on this site are also members on the second site. Again, members from across the world. Also very good information and knowledgeable people. Also has a number of interesting participants.
http://www.heathermills.org/forum/ - this is the Heather Mills amp forum site.Unfortunately, I have been unable to register for this site; I repeatedly get a message that the administrator is not accepting new members but when I periodically visit the site, I notice new members have recently registered. Like the other sites above, it has a number of different discussion areas. Members of this site are also members of one or more of the other sites. From the reading I have done on this site, the information appears to be of high quality and members seem to have a wide range of knowledge and amputations. Members are world-wide.
There is another site, the Amputee Information Network, which issues a periodic email that contains a variety of questions and topics submitted by members. Again, you need to apply. Here is the address: http://mailman1.u.washington.edu/mailman/listinfo/amp-l/ You can get additional information at: http://www.amp-info.net/amp-l.htm Again, a number of people who use this one are also participants on one or more of the sites listed above.
There are a great number of sites out there, many with fancy bells and whistles. Some are easier to use than others. The ones I have listed are ones that have well organized discussions, control their memberships (which effectively limits or eliminates spam and other garbage), and are totally focused on amputees. That is not to say that Disaboom or other sites are worse or that these are the best. These are sites that I have found to be of value to me, are easy to use, and provide good, credible information and support.
Time to quit. I will try and add some more in the couple of days.
Hello...I got your message in my mail and read your post. My husband did not have any depression at all....He was just happy to be alive...however, I am sure that not everyone is like that. Hang in there, it took us forever to get the ball rolling on help. He is a disabled vet and it still took 4 years for help to come. Our house is not chair accessable at all...we did have a guy from church to build a ramp so Mike could get into the house. Mike also uses a sliding board to get from chair to bed, chair to car, etc....Manual chairs are better because they keep up arm strength. I have heard of a lot of people getting weak when they use electric chairs....I suggest a seat bealt in your dads chair if he is have problems with balance...oh, and get a roho cushion no matter what chair he uses...it took 5 years, but, my husband finally got those pressure sores....he had to have surgeries on them. Mike never really did have balance problems or depression with his amputations....he had one done and one month later the other....too much radiation in the military. Anyway, sometimes tough love is the best love. If falling is a scare than you can get mats to put around his chair. We are going to build a house, hopefully soon...it has been 5 long years of not having this place set up for a chair. I would start with social services and the aging programs...community health, things like that if I were you....they tend to help...get in touch with your church and see if they can help....there are special showers for people in chairs and everything. I would need to know more about the situation I guess....like how old is he etc....is he on ssd? I think they would help. We finally took the plunge and purchased an equipped van...new. Real expensive and hard to afford, however, independence is the greatest thing. Now, Mike is drivng everywhere...I don't think he will ever let me drive again....they have a push, pull hand control and ramp, etc....as far as your mom, it just takes learning and the same with your dad. Mike and I did not have any help and did not know about this community. Soon, it all becomes second hat and is "normal" life for us. It is hard...real hard at first...I am sure it it much more hard because of your dad's depression. I had to stop working and it was just a mess...we had to file bankrupsy and all....now it is getting better, slowly but surely. I am willing to help as much as I can...I h;pe that I have helped some...oh, btw...I am a Mental Health Counselor and have delt with depression and such with my clients~...I will help in any way that I can...
Your friend from KY...
leiah
Hey Sheila. I'm sorry to hear about your dad and his troubles. I'm a 48-year-old right below the knee ampute of three years, having lost my leg indirectly to cancer. Wow, what a shock for you and your family. I went through a bad situation myself and, when you are going through such a time, you feel so lost at times. I think time will be the best thing for you and your family. It gets easier as time goes on. He will find his own way. Can you talk to a prosthetist, or even his doctor. It sounds like he may be depressed, and rightly so. I needed to go on an anti-depressant then and I'm still on it.
I get a magazine called "InMotion." It's published by the Amputee Coalition of America. It's free and comes bimonthly. They have a lot of good articles in there. Here's a link to their web site: http://www.amputee-coalition.org/index.html
Good luck to you and your dad. Feel free to send me a private message any time.
Becky
I'm new to the amputee world myself, and I feel for your Dad. I am fortunate in that I've only lost my right leg BTK, but I did have the same fear of falling or being dropped. Especially while the incisions were still fresh, and I was afraid of breaking them open or pulling out stitches and such. Every time I tried to do so much as a transfer, I was terrified that I would slip out of the chair, or fall off the toilet while moving to the chair. Before I was able to transfer by myself, I was afraid that the nurses were not strong enough to lift me, and would drop me.
Curiously enough, the way I overcame my fear of being dropped was when two nurses actually DID drop me, and the fear of falling went away after I took a fall in the bathroom. Once I realized that I had not broken anything and that I was OK, it became much easier for me to stretch out and try to do other things, to see what I was capable of. I'm not suggesting that you purposely drop your Dad or encourage him to fall. But, DO encourage him to try to get from one place to another and transfer himself to the toilet, the bed, etc. Try to hide your own fear of dropping him or of him falling, because if he has no confidence in you, he will have even less in himself.
Is your Dad doing any kind of therapy to improve his upper body strength? I highly recommend this, because he will need it to be able to transfer by himself. If insurance won't cover it, perhaps you could make some hand weights yourself for him to use (fill drink bottles of different sizes with water for different amounts of weight). Maybe you have a friend that could install some kind of bar for him to attempt pull-ups or chin-ups to regain strength. The important part is for him to try to keep everything moving and not let it atrophy, or he will be in a real pickle.
Maybe it would even help to get him on the Web and direct him to this forum. He may be uncomfortable discussing his fears and concerns with you because he IS your Dad and doesn't want to appear "weak" to you or your Mom. I had this problem with a few members of my own family - they are so used to my being independent and strong that they were completely at a loss when I became an amputee. It was easier for me to tell my concerns to the therapists and nurses than my own friends and family, because they were "neutral." ears to talk to.
But, above all, keep encouraging him to try things on his own, and try to entice him to get out and about as much as you can. Like I've said, I was fortunate in that I have been adapting quickly, but I know it is going to be more difficult for some folks than others. I'll keep you in my prayers.
hugs from ducky
Thank you all so much for your kind and helpfull words. We really are having alot of issues. I do beleive that my dad NEEDS to have a peer councilor like one of you suggested. (sorry I dont remember exactly who..) I also think my mother would also benifit from that as well. She has so many questions and nobody to turn to. Unfortunatly they do not have a computer, kinda stuck in the 80's. LOL. But I have written all the numbers down and I AM GOING to gove them to my mom. I know she will use them. I also plan on visiting all the websites you shared and getting info myself. I feel like im no help to him. He is sad, I see it, and I HATE it.
I wanted to answer a few of the questions that were asked in your replies...
My dad id 54 and has always been very independant and active. The reason for the amputations was poor circulation. NOT caused by diabetes. In 04 he has a 4x heart bipass and things just went down hill from there.
He is now receiving SSI and disability, that has barely gone through. He just got a letter from SSI saying that he will no longer be eligible for it since he will be making so much money in disablity. (crappy) So with losing his SSI he will also lose his INS as of the 1st. I dont know how they can amputate a mans legs and then leave him with no Ins a month later with no meds.
Now, here are more spacific questions. We are having problems and would love some advice.
Sleeping
He cant get comfy. hes always slept on his tummy and cant now. I thought maybe a body pillow might help him? Any tips?
Because hes losing his INS we are worried about the expence of a power wheelchair. Are their places that we can call for help with this?
pants
Obviously he has no legs, from pretty high up. We are kinda at a loss as far as pants for him. Hes been wearing sweats that are cut off but in the avent that he will actually leave the house, he will need some clothes, What have you dont to modify your clothes?
transfer boards.
OK, I have no clue. I guess I can figure out what this is by the description but do you buy it? make it? no clue
Ive read just about every post here and ive heard about the "sock" in many. Ive read alot of you say that its more comfy. What is this and how do we get one? At what point do you begin wearing it? He does still have staples.
Bleeding
His surgery was April 20th and the more recent leg is still bleeding. Is this normal?
Prosthetics
because his amputations are so high are they even possible for us? One leg is a little lower then the other but they are both pretty high.
Balance
ANY tips here will be GREAT. He has been spending most of his time in bed watching TV. Even this is giving him balancing problems.
OK, I think im done. Thanks again, SO much. Hopefully will alot of help things will be back to normal again.
Sheila777: Sleeping He cant get comfy. hes always slept on his tummy and cant now. I thought maybe a body pillow might help him? Any tips? Because hes losing his INS we are worried about the expence of a power wheelchair. Are their places that we can call for help with this? pants Obviously he has no legs, from pretty high up. We are kinda at a loss as far as pants for him. Hes been wearing sweats that are cut off but in the avent that he will actually leave the house, he will need some clothes, What have you dont to modify your clothes? transfer boards. OK, I have no clue. I guess I can figure out what this is by the description but do you buy it? make it? no clue Ive read just about every post here and ive heard about the "sock" in many. Ive read alot of you say that its more comfy. What is this and how do we get one? At what point do you begin wearing it? He does still have staples. Bleeding His surgery was April 20th and the more recent leg is still bleeding. Is this normal? Prosthetics because his amputations are so high are they even possible for us? One leg is a little lower then the other but they are both pretty high. Balance ANY tips here will be GREAT. He has been spending most of his time in bed watching TV. Even this is giving him balancing problems. OK, I think im done. Thanks again, SO much. Hopefully will alot of help things will be back to normal again.
Sheila, I had the same problem, I can't sleep on my stomach now. It feels like my stump is sticking up in the air when I'm on my stomach and I hate that. A body pillow or several pillows would probably help. I like to wrap my stump in a throw that is doubled-up. I have circulation problems too and it gets cold.
I think it's disgusting that his insurance is dropping him. Geesh, that's terrible. Sorry, I can't help with the power wheelchair info. You might contact the hospital where he had his surgery. The hospital social worker might help with that matter and could help with other questions you have. She might be able to take some of the load off your shoulders and do some research for you.
As far as his pants go, maybe if you bought him shorts and sewed up the ends of the legs, depending on his stump length. Otherwise, cut off the pants at the right height and sew them shut. Better yet, take them to a seamstress to sew them up, unless you or your mom have a sewing machine.
Transfer board. Again, the social worker could help with this. Otherwise, check your local telephone book for a medical supply company and see what they have.
Socks. He should probably see a prosthetist, even if he isn't getting prostheses. The prosthetist will give him stump socks, heavy duty stretchy fabric socks that are tapered down to the closed end. These are worn when you don't have your prosthesis on. They can be very tight and painful to put on at first. Once the incisions heal up and the swelling goes down, they aren't painful to put on. However, once they are on, they make your stump feel so much better and less painful.
Bleeding. If it's not heavy and it's not purulent (pus) drainage, it's normal to have a bit of bleeding. Once he gets the staples out, he will heal up and this will not be an issue.
Prostheses. He needs to see a prosthetist. Perhaps at the hospital where his surgery was or even at a clinic. You may have to do some research here to find the right person you like. Don't be afraid to get a second opinion and certainly don't take one person's word as gospel. Someone else may have a different idea about prostheses for him.
Balance. Unfortunately, he may have problems with that, but again he might not. I have balance problems, some people do not.
There is so much new information here for you. I'm sorry you have to go through all of this. One thing I do know is your father is very lucky to have such a concerned and caring daughter, You will become an expert in this, it may not be for a while, but you will get there. And so will your dad. I wish you and your family all the best. My e-mail is: bbtcolds@aol.com, if you want to send me an e-mail.
Godspeed and hang in there.
If you want....maybe we could talk over the phone? And, Maybe your dad will talk with my husband over the phone? Just a thought....
Mike stays in shorts. We never sew up the ends. We just buy a lot of shorts when they are out. We get them in all colors and such. Mike even has a really nice pair that he will wear with his suit and tie.
Slidding board or transfer board....you can get these in wood or plasitic....you get them from a medical supply store and the cost anywhere from 40 dollars to 200. I just got one for Mike that is supper cool...it is plastic and actually has a seat on it. The seat slides, not the person. That way, there is no friction. You can look up transfer boards on the internet and see them there. The one that we just got Mike..off the internet...is called the BeasyTrans Transfer Systems.....He really likes this one!
He will be independent again...trust me! Eventhough Mike did not have depression with his amputations, it took a while for him to feel comfortable in doing things himself...it did for me as well. You dad is just a little older than Mike is right now. Mike now drives and all kinds of neat things! Your dad will as well, he just has to learn how. It is really hard.
As far as balance. On thing that Mike did was sit in the middle of the bed. He had me to push him just a little...I was able to push him harder as time went on. Now, there is absolutely no balance problems at all. When we were doing this exercise, he would have his hands above his head. At first, I called him a weeble wobble LOL now, there is no problem at all!!
I pray for your dad. It is not easy to lose any part of your body...then, like my husband, he loses both of legs above the knee....it is a hard thing...it really is.
Hang in there...really, it will get better and he will learn to adjust. He will be active again. It just takes time.
You are a wonderful daughter to help him out like you are. You hang in there as well! Now, your mom is the one who is going to have the biggest adjustment. I know that it was harder on me than it was Mike. I am the one that had to learn all this new stuff....Be there for her as well....Prayers for your whole family.
Thanks for all your comments, again. I really so appreciate them.
Unfortunatly my dad is going back into the hosp on Sat due to an infection in his latest amputated leg. (still having trouble calling it a "stump") Its already pretty high so they may have to go to the hip. Hes not taking it well at all. Neither is my mom.
Ill keep you posted. Thanks so much!
gee, sorry to hear that. don't forget to tell him we are thinking of him here ok? good luck.
Sheila777: Hi everyone, Thanks for all your comments, again. I really so appreciate them. Unfortunatly my dad is going back into the hosp on Sat due to an infection in his latest amputated leg. (still having trouble calling it a "stump") Its already pretty high so they may have to go to the hip. Hes not taking it well at all. Neither is my mom. Ill keep you posted. Thanks so much!
Sorry to hear about that. Yes, let us know what's happening. Call it a "residual limb." Stump is hard to say.
Thoughts and prayers. Hang in there.
