I’ve gotten several emails recently from visitors who are dealing with a brand new ALS diagnosis, so I thought I would write a little about what I went through at first. I hope it’s helpful.
You should also see my previous blogs, especially Caring For The Caregiver.
If your loved one was just diagnosed with ALS, you’ve probably known something was wrong for some time. ALS causes the body to lose function, so some loss is noticeable ahead of time. You’re probably a little lost or in some amount of denial. You might be angry. All of these are natural human emotions.
If you’ve decided to become a caregiver, you may feel mixed emotions as well, including anger and distress about “lost opportunities” for yourself. That is entirely normal too. The important thing to remember is that there are no lost opportunities. While it does take a great deal of sacrifice to become a caregiver, and you should be appreciated for doing so, you will still have the chance to do everything you want to do at a later date. The only reason you wouldn’t is if you stopped yourself from going after it when you are able. Continue to look forward to things you want, and continue to work for yourself as you work for your loved one. Always make sure you live your life – we’ll get into that more later.
Things to get used to
One of the hardest things about working with ALS is the changes you’ll see take place. The change that bothered me most was when my mother’s arm strength detereorated. One day she was still lifting some items. The next she had to use her right hand to lift her left. I had a lot of trouble with that. There will be many moments when you notice suddenly that something has been lost, and it will be tough to deal with. It’s important to remember that, as hard as it may be, you will adjust to these things.
As an example: when mom had her feeding tube put in, I freaked a bit. I was scared to death of it. I didn’t want anything to do with it. I’m not sure what I was so afraid of, but after only a couple of feedings I became Miss Feeding Tube USA. There’s nothing to it. When mom had a port in her chest for a while it scared the tar out of me too. That was worse because I was pushing a needle through her skin and I’m phobic of needles to begin with. I managed that too. You never know how you’re going to react to any particular change, so don’t feel bad if something stresses you out. It’s normal, and you may end up far stronger than you thought you’d be.
Me, I never thought I’d be able to make health decisions for mom if she was incapacitated. I had her name her pastor as her health proxy with me as a backup because I couldn’t handle the thought. When we were stuck in Little Rock and big decisions had to be made though, I surprised myself by how quick and effortlessly I stepped up. Margie was quite proud of me. So even if you think you won’t be able to handle something, you probably will when it comes down to it.
If you’re a fairly young person, suddenly switching roles may be a big shock to your system. Even if you aren’t young it may come as a surprise. You will eventually adjust to that too.
Why is my mom/dad/grandparent/patient mad at me?
He or she probably isn’t mad at you at all. A debilitating disease is extremely frustrating. Imagine how you’d feel if you’d alwaysn been independent and suddenly needed someone to pick things up for you, or feed you, or turn you over in bed? Anger and frustration at a disease is very easy to let out at other people without even knowing it. You need a release and whoever is nearby is often an unintended target.
Don’t take it personally. Your patient may just need to vent, and that’s entirely natural too. Sometimes you will need to vent. In that case try not to vent at your patient, because they can’t help you. Vent at a friend or relative, and let them know you need to vent. Your true friends will not mind at all. If you snap at them, just take a breath and tell them what’s going on with you and that your anger is not directed at them. If you feel like these emotions are coming out at inappropriate times or at people you don’t even know, don’t feel bad about talking to a support group member or a counselor. People vent to them all the time and they never judge you for it. Whatever you do, don’t hold it in. It will build up, so an occassional release is necessary.
How bad is this going to get?
ALS isn’t a nice disease, and it’s made worse by the fact that every patient is different. You can’t predict the order in which events will take place. You’re going to see your loved one decline in function, and that’s hard. Depending on the progression, you’ll be helping her as she (or he) gets walkers, wheelchairs and living aides, and potentially breathing machines, feeding tubes and IV ports. There is no cure for ALS and diagnosis carries with it automatic disability status by the government.
I won’t lie and say it will be easy, it won’t. You’ll handle some things better than others. My mother’s greatest fear was suffocation. She doesn’t worry about that anymore though, because now that she is in her last stages (which can last anywhere from months to a few years), she’s under hospice care. Medicare helps pay for hospice, and you can start off at home. Right now we have a dedicated nurse that comes over a couple times a week and an aide that comes and helps with baths and light housework and stuff. They monitor her medications and keep up with her progress.
Once a quarter she goes in for five days of respite care, which is essentially a caregiver break time. Our hospice, Circle of Life, is great and they take great care of her. If there comes a time when they want to keep a closer eye on her, she can move into the hospice center.
Our nurse has put mom’s mind at ease. When she is closer to death, she will be made comfortable and will not know or fear what’s coming. That information helped me as well.
How can I handle death? This is my loved one we’re talking about?
I asked that question a thousand times. As ALS progresses this question will decline in importance. There will most likely come a moment when you realize your loved one is ready. I had that moment in Little Rock when mom was in so much pain after surgery complications and wanted to die. It finally occured to me that she had come to terms with it and the only reason I wasn’t with the program yet was that I wanted her around for me. When someone is ready to go though and don’t have a real quality of life anymore, you’ll probably come to the same conclusions I did. Now, I just want her to be happy and comfortable. While she is still enjoying her time, I want to enjoy it with her. When that’s no longer possible, I want her to have peace.
I know that I will go through all of the stages of grief when mom’s journey finally is over. I do think I will be helped by knowing that she won’t have to suffer anymore.
If you’re a caregiver, you’re doing something wonderful. Your patient may not know how to thank you but you are helping. It will be a tough road and you may need to seek outside help sometimes. You shouldn’t feel guilty about that, or about any conflicting emotions that come your way. They’re normal. Humans don’t naturally want to deal with these things but when the moment comes, they usually find they’re far more capable than they thought they were.
Remember – support groups aren’t just for patients. Use them. And have faith in yourself.
