Activities of Daily Living (ADL)…. It sounds simple. You wake up, you get out of bed, you shower, toilet, shave. Then you get dressed and get your breakfast. You do all those things you do before you head out the door and take your car, bus, train, bicycle, or walk to work. Or perhaps you are the one helping your partner get ready for work, and get your kids ready for school.
We do these things without really thinking about them. We take them for granted. They are just some of the Activities a “normal” person does in life.
Other activities include the ability to eat, drink, smell, feel, walk, even breath normally.
When you are sick, these abilities become diminished. If you have a stomach bug, you can’t stand for a long period so it makes showering harder, you need to visit the bathroom more frequently, you can’t eat much, or even hold down what you do eat. You certainly can’t get up and cook for yourself.
When you have a disability this can be your normal. The strength of that disability is judged by how well you manage ADL.
We recently received all Derek’s documents from his admission to hospital last year. The term ADL was regularly used to judge how ill he was. Still a year later, he is questioned about how he manages ADL. We have realised that there is more to daily living than you we thought. Another of the ADL that Derek has to deal with is going to work. He can’t catch a train, drive a car, or catch a bus so he is driven by “Driving Miss Daisy”.
One of the big things are that Derek can not do now is drive safely. He is allowed to drive for approximately 10 minutes at a time, but he doesn’t feel safe. If he gets a fright or has to react immediately we don’t know what is going to happen. The other day we were walking across the road, not on a pedestrian crossing (bad us). As we stepped into the road I noticed a car come around the corner a little faster than it probably should have, and was accelerating out of the corner.
I jumped, sped up, and made it across the road. I had shouted “watch it” to Derek. After jumping out of the way, I turned to check what Derek had done. He was standing in the road, his brain was telling him there was danger, but he stopped to analyse what he should do. Thankfully the car slowed down, and he turned to walk back to where he started. It all seemed to happen slowly, but it appeared he knew there was danger, but didn’t have the ability to react quickly.
He also feels unsafe going out further than the local supermarket (5 minutes’ walk from home) on his own in case he has one of his “episodes” while out and he would not be able to get home. This includes taking public transport as he has no control over what happens and sudden breaking of a train or bus could cause the problem.
Being independent enough to drive, or take public transport is an ADL. It’s one many of us take for granted.
When he has an “episode” his ability to carry out ADL is diminished. Depending on how bad he is, depends on what he can or can’t do. It could be that he can’t stand up to have a shower, it could be that he can’t go shopping (even with company). One day, it meant he couldn’t multiply 4 x 5. He didn’t recognise the colour RED. He may also need to ask me advise on the basics of life, including if he should take extra medication, etc.
One of the hidden activities he finds extremely diminished is his ability to drink. Since his CAPS last year he has found he can’t drink more than a sip of fluid at a time. He used to be able to down a glass of water in several large mouth full’s (gulping). Now he if he takes a mouth full of water, he needs to swallow in small portions. If he tries to drink it too quickly, he starts coughing, as it “goes down the wrong way”. This is a problem because if done regularly it can cause pneumonia. It’s something we all take for granted until we can’t do it.
Fatigue is another major issue that affects daily living. If you suffer brain fatigue (which Derek suffers regularly) then it translates to physical fatigue. Once the brain is tired, it slows down, and other activities get harder to do. It’s a slippery slide. Once you become fatigued, if you try to continue the fatigue gets worse, so it gets harder to do things, you try to use more brain power, and it gets harder. This continues until you can’t get out of bed and all ADL begin to fail.
There are a multitude of activities that he would never have needed help with 18 months ago. His Dr is now talking about him being disabled. The only question is, does he have a minor or moderate disability?
People look at him when he is having a good day (and leading up to Christmas he has had several good weeks) you would never consider him disabled. That’s because we only go out when he is feeling well.
The problem with hidden disabilities is that “they are hidden”. If Derek says he has Addison’s Disease, or Adrenal Insufficiency people say “Oh, so you just take tablets and you are fine?”. Even some medical professionals say, “replace the cortisol and you can live a normal life”. They are wrong. He takes medication and he stays alive. ADL is something completely different.
Problems with ADL can be a serious issue. One that should be talked about more.
If you know someone who has a Chronic Illness you can’t see, try asking them how they get on with ADL. You might be surprised.
Perhaps in 2014 make it a goal to find out more about how that person copes, and if there is anything you could do to make their life just that little bit easier.
Don’t ask them what you can do to help, ask them how they cope with ADL, and work it out for yourself. People don’t always like to ask for help, but if you stop and listen, you will pick up what they really need assistance with. This could be as simple as taking the person with the condition out shopping, to give their career a break.
One of the things we had to consider this Christmas was who was taking Derek out to do his Christmas shopping for me, as obviously I couldn’t, because he couldn’t go alone. We were lucky enough to have someone who realised the problem, and organised to take him out.
Sometimes, it really is the little things that help. You don’t have to cut off your arm to give them. Time, a lift somewhere, even just making the cup of tea for them when you visit is sometimes the greatest gift that can be given.