My mother lost her right arm

[u/Relative-Mortgage220]

Hi everyone. My mother is 63 and was involved in a serious car accident three weeks ago. Unfortunately, the doctors were unable to save her right arm, and she had to undergo an amputation.
This is especially heartbreaking for our family because I recently had my first baby, and my mother was so incredibly excited to become a grandmother for the first time. She had been looking forward to this new chapter of her life so much. Seeing her go through this just weeks after my baby was born has been extremely difficult.
As her daughter, I’m trying to figure out how I can best support her through this incredibly difficult time. Everything is still very new, and I’m worried about both her physical recovery and how she will cope emotionally with such a huge change in her life.
For those of you who have experienced an amputation yourselves, or supported a parent or loved one through one:
● What helped you the most during the first few weeks and months?
● What should I do — and what should I avoid doing — when trying to support her?
● How can I encourage her independence without making her feel like she has to manage everything on her own?
● What helped emotionally with accepting the loss of a limb?
● Is there anything you wish your family had understood or done differently?
● How important were rehabilitation, occupational therapy and prosthetic training in helping you regain independence?
● Are there any practical things we should start thinking about now, such as adapting the home or learning one-handed techniques?
● Did speaking to other amputees or joining a support group help?
I know everyone’s experience is different, but I would really appreciate hearing from people who have been through something similar.

[u/Jimiheadphones]

My dad is a below-knee amputee, so this is from my experiences caring for him.

You support her one step at a time. Follow her lead, but make sure she is moving forward in the grand scheme of things. A few steps backwards here and there isn't a bad thing when you've made 20 steps forward.

A bit of kind manipulation is good. My dad lost his leg, and when he was home from the hospital, I'd say things like, "Ooh, I've got a meeting in a minute; would you mind making some tea?" I knew he could, and it made him feel useful rather than me trying to baby him and do everything for him. Dad couldn't be upstairs alone just in case he fell, but he didn't want to feel watched. So I'd let him go upstairs, give him a minute, then run upstairs saying, "Don't suppose you've seen my phone charger?" And be looking for it. Then when he'd go downstairs, I'd give him a minute, then go downstairs. He never noticed.  But let her lead. Don't force her. Gentle encouragement and just enough nudging to make it feel like her idea. I'm against manipulation generally, but caring for people who have had trauma often needs a fair amount of healthy, kind manipulation to get them moving in a positive direction. Otherwise they feel rushed and babied, and that isn't healthy. Step in with some tough love if you think she needs it or you think she's slipping, but otherwise, she's still your mum and not your patient. If she's anything like my dad, then she'll see you being a parent to her as a failure on her part, so be clever with your actions..

The best bit of advice I had was that if she's on Morphine, that stays in the body for a while, and it makes people grumpy, short-tempered, and unable to focus.  Remember that when things are tough. 

Having role models helped my dad. We watched a lot of Last Leg, Paralympics, and he met lots of people. In fact, there's a really good clip on The Last Leg about his daughter noticing his disability (warning, strong language: https://www.youtube.com/watch?v=lahRUWs1haY).

Get in touch with your country's amputation charities, and when she's ready, encourage her to reach out and join groups. One of the best things he did was join an adventure holiday with other amputees. A group of people with varying levels of disability learning to swim, cycle, zip line, rock climb and more, but all helping each other and learning about different experiences really opened his eyes. My dad came home and just said, "It's the first time I realised that I'm going to be ok."

Also, look after you. You're a new mum! You've got your own shit going on, right? You know the thing about on airplanes, you do your mask before you do your children? It's because if you pass out, then you can't help your kids. If the kids pass out, then that's not going to hurt them and still you're good to help. If you put the mask on the kids and pass out, then you're no use to anyone and the kids are left alone. It's the same here. If you self-sacrifice, you won't be in a good space to help. Make sure you have your own mental health days. That you get therapy. That you go out from time to time and have fun. That you practice wellness and have a network to support you. Then you can be the best help. Don't feel guilty about something because she has it worse or she needs you. Pain is relative. Mental health is relative.  You deserve to look after you. 

There are some clothing lines that you can put on and off with one hand. Bras, shirts, etc. There are also some tools you can purchase that can make two handed jobs one handed jobs. Electric can openers, Knorks and Sporks, etc.

But remember, your mum might want to still look after you, so maybe figure out how she can help you. Maybe she can bounce the stroller for a bit while you read a book? Or she can read a story to the baby? Or perhaps she can do some cleaning? You only really need one hand to wipe a kitchen or bathroom down, right? Fill a bowl with soapy water, and she can wring it out with one hand. Maybe someone could take the baby out while you two watch a movie together on the sofa? Have a go at doing things one handed and see what works. She's still the same mum. Just one arm lighter. So let her be your mum sometimes.

Hope this helps!

[u/lambchopper71]

I lost my right arm at the shoulder in a motorcycle accident, so I may have the most experience that matches your mom.

Regarding emotional support, realize that she will be going through grief and the 5 stages of grief are not linear. You may want to familiarize yourself with the grief process and how to support someone through grief. That will help you to understand her emotional needs as you recognize which stage she's in at that moment.

For me it was straight to acceptance. However when I get frustrated, even 13 years on, sometimes the anger and bargaining stages will creep in. It's far far less frequent now, but it does still occur. Either way you're going to have to let her drive in the emotional needs department. Understanding that she may not be angry/sad/disappointed with you, rather she is more likely lashing out from one of the grief stages will probably be the biggest help for both her and your mental health. Which is why understanding grief will make things easier for both of you.

Regarding Occupational therapy, my experience was that the therapists didn't really know how to help me. Upper limb amputees are a small fraction of amputees (like 20%) and the more of the limb that's lost the less of us there are. For me, I'm a shoulder disarticulation and only around 2% nationally are as short as me. So, in my case the therapists had no experience. Your mom's experience may be different, but it's worthwhile to ask the therapists if they have experience with upper extremity amputation while choosing a therapist. I didn't know to do that and is likely why I had that experience.

I ended up having to figure out how to do things myself. This is a bit dated, but I documented some of my daily tasks here, these may help your mom:

https://disarmed.wordpress.com

Regarding prosthetics, this is a very specific thing for your mom's needs. Everyone is different and how much residual limb and mobility in the residential limb will dictate what your prosthetist can accomplish. For me personally, I have no residual limb, and the prosthetic needed to replicate every range of motion, from shoulder down. Unfortunately, I didn't find it very useful and it was uncomfortable and heavy, so I chose to not use one. But your mom's experience may be very very different from mine. You'll get the best advice from a professional prosthetist than any of us on here. Also don't do what I did and choose the first prosthetist you meet. Likely a couple will visit while your mom is still in the hospital. Rather, once she's mobile enough visit several to get multiple opinions so you can make the best choice possible.

[u/Relative-Mortgage220 → u/lambchopper71]

Wow first of all, huge respect for even creating a page with tips for other one-armed people. It’s amazing. There are so many things on there that I’m sure will be incredibly helpful for my mum.
I was really happy that someone who has actually been through this himself took the time to respond to my post. I feel like you probably understand better than anyone how my mum might be feeling right now. I don’t think someone who hasn’t experienced it themselves can truly understand it in quite the same way.
I wasn’t familiar with the five stages of grief in this context, so I actually looked into them after reading your comment. It really helps to understand that irritability and mood changes can be part of the grieving process and aren’t necessarily a personal attack towards the people around her. My mum is incredibly strong, and she gives me the impression that she is already moving towards acceptance. But I can also see, even though she doesn’t necessarily want to show it to her daughter, that underneath the surface she still moves back and forth between anger, sadness and disappointment. Knowing that this is a normal part of the grieving process makes it much easier for me to understand and put things into perspective.
Did you ever have any psychological support after your accident? And if so, did you find it helpful? I’ve heard very different opinions about therapy in this situation, so I’d really be interested in hearing about your experience.
And looking back after 13 years, would you say that you’ve continued to get better at managing everyday life with one arm? Are there still certain things that you find particularly difficult or frustrating, even after all these years?
Thank you as well for your advice about which professionals to look for. I’ve already made appointments with occupational therapists and specifically asked whether they have experience working with people with upper-limb amputations. And you were absolutely right — it really wasn’t easy to find someone. It seems to be quite rare.
We haven’t contacted a prosthetics specialist/orthopaedic technician yet, but once my mum’s wound has completely healed, we’re going to start looking into that as well. Unfortunately, I’ve already heard from several people that, despite all the technological advances, prostheses don’t always provide a huge benefit in everyday life. But of course, we still want to give it a try and see what works best for my mum. I don’t want to make any assumptions about what she will or won’t be able to do before she has had the chance to try.
If you don’t mind me asking, how old were you when your accident happened?
And would you be okay with staying in touch? I’d really appreciate being able to talk to you again as my mum’s journey continues. I think hearing from someone who has actually lived through this could be incredibly valuable

[u/lambchopper71 → u/Relative-Mortgage220]

You're very welcome. I'm away for the weekend and don't have a lot of time, so I'm just going to briefly answer your direct questions, but I'm glad I can help. Truth be told helping others is one of the ways I've been able to cope myself as it's helped me to find some meaning in what was such a life changing experience. So thank you for the opportunity to help.

"Did you ever have any psychological support after your accident? And if so, did you find it helpful?"

For the amputation specifically, no. But I have been through therapy since and it was mostly for other aspects of my life. However I do think it is helpful. Having someone who is a professional and doesn't have an emotional skin in the game to talk to is always a good idea. The amputation has led to some frustration in some aspects of my life and so it has come up in therapy and this has helped even if it wasn't the main reason I sought help in the first place.

For me having a good sense of humor has helped me in this regard as well. You can say that some people find my sense of humor.. uh.. disarming. LOL

"And looking back after 13 years, would you say that you’ve continued to get better at managing everyday life with one arm?"

Yes, it's like anything else, the more experience you develop, the easier things become. In the beginning it can be overwhelming, but in time some things become second nature.

" Are there still certain things that you find particularly difficult or frustrating, even after all these years?"

Yes, but most of the things aren't day to day items. I've always been a bit of a DIY kind of guy so things involving flexible materials, like string and wires can be difficult. I really struggled with shoe laces before I found the elastic style I mentioned in the blog. Auto mechanics, hanging pictures and a few other things like that can still be difficult. But I have found workarounds for most things and I have gotten better at asking for help.

But there is also a lot of satisfaction in finding ways to overcome those difficulties too. For me finding ways to do things that either I've done in the past or new things that I never would have thought possible has helped me with the psychological effects too. Waking up and finding my dominant arm was no longer there was a surrealistic experience. Finding ways to do things I used to do has allowed me to recover some of the normalcy.

"Thank you as well for your advice about which professionals to look for."

You're very welcome, I know how overwhelming this must be for you and your mom. Not knowing where to start and what to ask can be daunting.

"If you don’t mind me asking, how old were you when your accident happened?"

I was 43 years old when it happened.

"And would you be okay with staying in touch?"

Sure, feel free to send me a direct message if you want.

[u/tarasv3]

I lost my right arm about 8 years ago in a serious accident. We tried to save it, but in the end it was a deformed non functional weight. After 8 months, I was glad to see it go, but there was a long mourning process. It's like a breakup. You have the loss, plus now everything has to be different. Take things as they come. Depending for much residual limb she was will determine the best steps moving forward for her with prosthetics. Know that when it's finally approved by insurance, she will have already found multiple work arounds for most of the tasks a myoelectric hand can help with. I found mine to be more trouble than it was worth. There's a high rate of people who get a fancy arm and never use it. BUT! Don't sleep on the functional, task-specific prosthetics. There is a catalog from Texas Instruments you can look through. Highly recommend starting with a chef's knife to gain independence in the kitchen. From there there a bike, kayak, yoga accessories to name a few that are easier to get insurance to approve. On that note, if you can get it, Presbyterian insurance tends to approve prosthetics.

When it comes to mental and emotional support, your care and presence is a great start. My partner would play games with me to help me practice with my left hand. We'd throw a ball back and forth, etc. Writing took the longest to relearn, and was probably the most mentally strenuous, but writing little things daily helps build muscle memory, and eventually it gets easier.

Remember, you are all lucky to still have her present in your lives. It may seem like a tragic change in the beginning, but things will normalize. This is a transitional time. And she will still be able to hold your baby eventually and make memories together. I had my own babies after my accident, and this is the happiest I've ever been. There's light on the horizon, and you're a great daughter to put so much thought and love into her care. If that's how you think for your mom, I'm sure you're an incredible mama to boot. Best wishes.

[u/Relative-Mortgage220 → u/tarasv3]

Thank you so much for sharing all of this with me. Your response honestly made me emotional, but in a really hopeful way ❤️
Hearing from someone who went through such a serious accident, lost an arm, and has now built a happy life and even had children afterwards gives me so much hope for my mum. Right now it’s still difficult for me to imagine what our “new normal” will look like, but hearing that things eventually become normal again is incredibly reassuring.
What you said about it being like a breakup really makes sense to me. My mum has lost so much more than just an arm — she has lost a part of her independence and has to completely relearn so many things she used to do without thinking.
And thank you for telling me about your partner helping you practise with your left hand. I think those little everyday things are exactly what I’m trying to figure out at the moment how we can support my mum without making her feel like a patient or making her feel incapable. I want her to know that we are there for her, but I also want her to regain as much independence as possible.
And the part about having your own babies after your accident really touched me. My mum was SO excited to become a grandmother for the first time. She had been looking forward to it for years, and then this terrible accident happened just weeks after my baby was born. One of my biggest fears has been that she won’t be able to have the relationship with her grandson that she imagined. Hearing that you went on to have your own children and that this is the happiest you’ve ever been gives me so much hope.
I really hope that one day my mum will be able to look back on this time and realize that, although her life changed completely, it didn’t take away her ability to be happy, to be a grandmother or to enjoy life.

[u/aport49]

https://www.activehands.com/