Wednesday, 29 March 2017

Dealing with Paralysis: How to help someone dealing with a health crisis or a difficult time

I remember very early on after coming home from the rehabiliation center and needing to adjust to life now, having a conversation with a friend. She said she was nervous visiting me in the hospital and the centre because she was never sure what to say or do. She didn't want to say something to upset me, but also wanted to help in some way. Today, I want to share what I found useful and some insight into what I did and would have appreciated from friends and family during the recovery process. 

Now, that I have broken my leg and find my mobility again compromised, I am also trying to be very clear with loved ones about what is and is not helpful. Honestly though, even that is stressful and I wish I didn't need to. Hopefully, if you do find yourself in a position to help someone, these tips can help you to help someone else! 

First and foremost, I want to put a disclaimer out there that everyone is different and what works for one person will not necessarily work for someone else. Just because if you were the one ill one that particular form of help would help you, does not mean that that particular form of help would work for me. Also with the tips I am sharing today, keep in mind, everyone is just different. 
Dealing with paralysis: How to help someone dealing with a health crisis #paralysis, #healthproblems

What can you do to help

1. Ask 

Always be sure to ask. Ask what they need, what they want before assuming. Not everyone deals with these situations similarly and just because you would appreciate one thing, doesn't mean everyone else will. 

For me, I really loathe when other people push my wheelchair. It may seem extreme but it makes me feel incapable and demoralizes me. Unless I specifically ask for help, even if I am inching along very, very slowly, rest assured I am fine. It makes feel strong and accomplished when I achieve my goals and this is very important for my emotional well being and my self confidence. For other people, this may be different, but for me, it is very important that other people do not push me unless I specifically ask for assistance. 

Do not assume that someone in a wheelchair wants to be pushed - ask first! Some people even see a wheelchair as an extension of their own body. Look at it like this, image you are walking up a hill and someone comes up to you and says, 'Let me help you, it is too difficult for you to walk up the hill', picks you up and carries you. Weird right? Well, it's kind of like that for me with my wheelchair. Just because I'm slower than you, doesn't make me less capable. I need to do it myself. If I need help, I'll ask. 

Oh and on practical things with wheelchairs. If someone in a wheelchair is holding a door, ask them if they want you to take over, but don't just swing it open. I use doors for balance as I go through a doorway. If you swing it open for me, I'll likely loose my balance and can fall of out my wheelchair. So just ask!  

In general, ask what they need for you to do for them. What needs to be done? In these situations, we had so much that I had previously taken care of that was suddenly all on my husband's shoulders. He needed help while I was out of commission. 

Dealing with paralysis: How to help someone dealing with a health crisis #paralysis, #healthproblems

2. Don't just come over. Accept that the best thing may be to send a card or text message and just stay away for a bit.

Another example is from the beginning of my recovery when  I first came home. I really needed to be left alone. Okay that seems weird, but I did not want company. It wasn't out of depression or sadness but because my husband, son, and I needed to figure out how to function again as a family in this new situation and it was difficult. We needed that time alone, and unfortunately, we didn't really get that because our house was still under construction and we were living with my in laws when I first came 'home'. 

This situation really led to a lot of struggle between all of these relationships, and personally, I felt a very large heaviness from being around other people. It limited my ability to really be honest with myself about where I was at with my recovery because I wanted to put on a strong and capable face for my in laws. I wasn't in the comfort of my own home to truly express how I felt and how I wanted to be treated. It was all very complicated. 

Similarly, for visits with friends and family, I know they want to visit out of compassion and love, but there were few people I truly wanted to spend time with during the beginning of my recovery because I did not feel truly up for it. The people I needed to see, I called myself and I will always be grateful to a dear friend who cooked for my husband while I was in the hospital, who came to me when I called her crying, and whose husband helped mine work on our home. Which brings me back to the ask. 

Ask whether a visit is something they want or need, but be okay to hear no. Don't push, and whatever you do, don't just drop by unannounced! 

3. Offer to be a listening ear but don't emotionalize for them. And accept if they don't want to talk about it. 

If others want to talk about my injury, I am usually very open. However, I find it difficult when people acknowledge how difficult my situation is. I know that it is difficult. I know that I have days when I struggle. What I need more than anything is to feel normal. I don't want YOU to tell ME how bad MY life is. Does that make sense? I don't feel like my life is so terrible with a wheelchair. I feel pretty normal most days, but when people get pushy that I acknowledge my struggles, they end up making me feel like I should be depressed.

Here's an unhelpful conversation: 

Person: how are you doing? 
Me: pretty good, you adjust to these situations. So, all in all, now that I've figured out so much, I'm happy to be able to be independent and take care of my family. 
Person: surely it's not always easy.
Me: I'm really doing good. (I'm already very uncomfortable at this point)
Person: but you surely have bad days. 
Me: I guess, yea... 
Person: it's such a sad and difficult situation. It's so hard for you. 
Me: um... I'm fine. 
Person: but ... 

I never know what I'm supposed to say then??? Do people want me to break down? Do they want me to say it's impossible. Is it hard to believe I could be happy from a wheelchair? I mean, the latter would be quite sad. 

Here's an example that could be helpful: 

Person: How are you doing? 
Me: pretty good, you adjust to these situations. So, all in all now that I've figured out so much, I'm happy to be able to be independent and take care of my family. 
Person: it doesn't seem easy. Do you want to talk about it? 

At this point, what is very nice is that a) you will have acknowledged the struggle, but you leave room for the ill/unwell person to be able to discuss their own feelings. 

But seriously, don't tell me how I should feel in such a situation. That's just not cool. Don't push someone to open up and admit that they are struggling. Maybe they aren't and this pushing just makes everyone uncomfortable. Maybe they are struggling, but don't want to talk about it.

For me, I find that there are just few people that believe me when I say I am doing good. As if I need to be depressed because I cannot walk. If I am having a bad day, then I certainly don't want to talk to those particular people about it because then I feel like I am proving their point that I cannot be okay.

In general, offer to listen if someone wants to share, but be willing to accept no. 

Even if you are close to this person, and you may be desperate for an update, just accept that you will be told whatever the family feels comfortable sharing when they feel comfortable doing it. 

4. Ask how someone is doing today 

It's sometimes a strange feeling when someone asks us how we are doing in general. I guess in general, I still prefer to walk so that sucks. I broke my leg now and need surgery. I guess I'm doing okay, but I'm confronted again with these things that are so horrifying for me (separation from family, being away from Yvann, being in hospital, being operated upon). It's scary, hectic, unsettling and horrible. And a simple question of 'How are you' suddenly becomes overwhelming. 

You know what makes it much more manageable? Ask how someone is doing today. Not every day is the same, so maybe it's easier to answer how I am on a specific day rather than in general. I really appreciate that small subtlety in wording and so does my husband. It's just as hard on him, and he has a harder time with being asked the general 'how are you' than me, especially when I was first injured. 

Person: how are you? 
Husband: my wife will never walk again. So great! 

Okay, that was a bit sarcastic and maybe he didn't say it quite like that. My husband did tell me that at work, people kept asking him how he was and he really wanted to say something very sarcastic, but had to be polite because he's a nice guy. When people asked that question, he would just say something to get them to leave him alone. When people did ask him how he was doing that day, he said he really felt a big relief that he could actually answer that question without feeling overwhelmed and angry. 

5. Bring food 

When I was first home, and now again with upcoming surgery, it's more difficult to cook. It is such a relief when someone offers to bring us a meal. Whether it's a freezer meal for later, or a warm cooked meal for now, or healthy snacks for our son, we appreciate that so, so much! 

If you want bonus points, bring some groceries! Going to the store can also get complicated when the healthy spouse has to take on all of the household duties and caring for the ill spouse and the kids and work and this and that and then some other stuff. Cutting out a trip to the grocery store can be a saving grace to add a little bit of time to that family's day! 

Dealing with paralysis: How to help someone dealing with a health crisis #paralysis, #healthproblems

6. Bring something fun for older kids to do (but quiet)

It's easy for older kids to be pushed aside as a result of the craziness. It's heart warming for me when someone is thoughtful enough to bring something small for Y that he can feel special again. It breaks my heart to one million shattered pieces to be away from him or to be out of commission for him. If he gets a small extra bit of attention to make him feel like you care about how he's doing, it makes the heartache a little manageable and means so much to know that you care about my kids. 

Just giving the older kids some attention is also nice. Simply playing with them for a bit can be very nice! 

Dealing with paralysis: How to help someone dealing with a health crisis #paralysis, #healthproblems

7. Generally it helps, if...

In general, when dealing with difficult health situations, I think the best thing you can do is make sure the family knows that you are available to help, but don't be pushy about it. 

Recognize that this situation isn't about you. It may sound harsh, but when people are struggling to get a grasp around how to move forward through their crisis, it's hard to think about friends and other people's feelings. So if you don't get an update when you want, or if they don't want to visit with you, just try to give them a little bit of slack and understanding. 

When you do make an offer to help, it's important that it be something you can realistically fulfill. Don't offer any empty promise that you cannot fulfill just to be nice. It's much better then not to offer anything. If you offer freezer meals, make sure you can deliver on that promise! 

Sometimes, just sending a positive text message can do wonders. Positivity and encouragement is just so nice when I am particularly down. 

Not everyone is the same so again, the first and most important thing to do is ask! Please, don't just assume what will be helpful, how someone feels, or that you know what they are going through. Everyone is different. Just ask, I promise, it will make it easier for everyone!  

What not to do 

1. Don't take over 

In these situations, the Montessori saying 'Help me to do it myself' can be very appropriate. When someone is dealing with a health crisis, your entire world is upside down. There is a lot to process, and lot of grief, loss, struggle, and pain emotionally and physically and not just for the ill person but for their family, too. 

Don't just come in and say 'I will do this and this and this', it's so overwhelming! 

In these circumstances, I find it critical to be able to have small things I do for myself. Even if that means serving a guest coffee or tea. 

To be honest, I absolutely loathe if I have company and they go to the kitchen to serve themselves as they casually say 'it's easier for me than for you'. Ohh, goodness, thinking about it just makes upsets me! This really goes back to the part about assuming. 

But my point is, that I don't like it when people take over for me, especially if they make the assumption about what I can or cannot do. I can certainly decide that for myself. If I need help, I will most definitely ask. However, I find it very rude if people grab things from me, or do things for me when I am perfectly capable of doing them myself. 

Remember, another quote: 'Never help a child with a task at which he feels he can succeed'. The same thing applies here - unless someone asks you clearly for help, do not take over. It's very demoralizing to be honest. Even from well intentioned people, it makes me feel very upset and the message it portrays is that I am incapable of taking care of myself, my home, and my family. 

2. Do not clean someone's house without their consent 

There are somethings in my home that are very, very specific. I have a specific pillow that I use to nurse Natasha that looks like it should go on the couch. I can't always get to the couch because of toys. So if I am in the hospital, and someone comes home and rearranges things for me, I have to really spend a lot of time when I return figuring out where things are in my previously perfect oasis.

Story time - a few days ago, I came home from the hospital after breaking my leg and staying there nearly one week. My entire bathroom was rearranged, my daughter's closet was rearranged, and many things were placed in spaces I could no longer reach them, like my favourite pot. While it may seem, like a favour to 'tidy up', most things have a very specific spot in my home to enable me to be independent. 

If someone comes here, rearranges things, I become a prisoner in my home and need help to do basic tasks I should be able to do had my things never been moved. This means instead of the best intentions of helping, my recovery has become more difficult and unpleasant. Instead of relaxing then after a hospital stay, my husband and I need to go through our house and put everything back. Good intentions have then led to extra work for us. 

Aside from those practical reasons, not everyone is comfortable with having someone else invade their private space by cleaning it. Again, the best thing to do is just ask. Some people will find it amazing, but in our case, this is not a way to help my family. 

The most important advice

All in all, I feel like no matter what I say here, the most important thing I can say is please ask, don't assume! No matter what difficulties someone faces, everyone deals with struggles in their own way. You can really make someone feel valued and help them so much more if you just ask: 

How are you today? 
Is there someway I could help you? 

Those two questions can do wonders for loved ones going through a health crisis.

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