I’ve moved this blog to it’s own server.  This blog hosted at WordPress will no longer be updated.  All of the posts have been moved to the new site.  Visit it here: ALSCaregiver.com.

I knew it would happen eventually but I wasn’t as prepared as I thought I’d be.

Mom, our friend Margie and my brother Shawn went to Branson a few weeks ago.  While they were picking up tickets, Mom felt that she needed a breathing treatment.  By the time they got to the hotel they had to call an ambulance because she could barely breathe at all.  She didn’t go to the hospital that night, but Margie quickly ran and bought an adapter so the BiPap could be plugged into the cigarette lighter of the van (finally, it has a use).  When mom continued to have trouble, Margie decided that since we had an appointment with the ALS doctor in Little Rock on the 8th anyway, they might as well head on down, so she rocketed down the highway and checked mom in to UAMS.

I drove down to be there because the doctor decided to go ahead and put in a feeding tube before the option was off the table.  I got a hotel room for my brother and I to stay in and we started to get to know the parking lot staff.  The surgery was successful but mom didn’t feel right the next day.  Neither did we, so we talked the doctor into letting her stay another night.

That turned out to be a great idea because that night, all hell broke loose.  Mom started throwing up blood and the doctor asked me to come in and sign the Do Not Resucitate order.

If you’ve never had to handle something like that for a parent, I hope you never do.  It’s a right hand slap to the side of the head by reality.  Mom was moved to ICU and given blood while the doctors tried to figure out what we going on.  I had a friend drive down and take my brother home where his staff could keep an eye on him.

I was given the choice of allowing a scope that would go down mom’s throat and into the stomach.  I was told that when this happens after a feeding tube, 90% of the time the bleeding stops on its own.  If I agreed to the procedure, given mom’s breathing capacity they might have to put her on a ventilator.  That would be fine except ALS patients sometimes can’t come off a ventilator once they’re on and mom refuses to be put on one.  So I said no and thankfully, I was right.  The bleeding did eventually stop and we were moved back to a regular room a few days after going into ICU.

A couple days later we made it to Russellville and spent the night at the Hampton Inn, which was when my plantar fascitis came back with a vengeance.  I’ve learned now that just because your brain can turn off pain out of sheer force of will, it will eventually come back hard.  Luckily the flare up only lasted a couple days and I was back to my “waiting to fully heal” phase.

Mom was sore for several days after we got home but is doing better now.  She’s reached the point of being in more pain due to her immobility so we’re trying to keep her moving by our power as much as possible.

After this experience I’ve gotten over any denial I might have had.  After seeing her in so much pain, I now feel like I’d be doing her a huge favor when the time comes to let her go.  We’ve gotten signed up with Circle of Life Hospice, so when that time comes they’ll make sure she has no idea.  That makes her feel better.

You might not know what you’ll do when this kind of experience comes along, but you might be surprised at what you can accomplish.  Having this follow 12 weeks of being in a wheelchair myself has really made me understand more fully what my mom is going through.

As an update, I’ll just say that mom has decided she can’t be without the BiPap.  While she does not want oxygen, she has realized that the BiPap helps her breathe without forcing in oxygen.  She hates it, but she’s working with it.  The truth is, we can’t risk being without it at all now, so we’re in a new adjustment period of figuring out ways to still do things and yet have power handy and nearby.  Since I can’t afford it, it’s up to her if she thinks it’s worth it to spend $500 on a portable battery for the BiPap.  I’m all for it but it’s not my decision.

A while back I wrote about the BiPAP machine that mom got to help her breathe at night.  We finally found a mask that worked ok because the nose pieces weren’t working at all, but today she told me she isn’t going to use it.

My mother’s greatest fear is suffocation.  Apparently, if you don’t get enough oxygen, carbon dioxide builds up in your brain, diminishing certain sensations and fears.  If she uses the BiPAP, she’ll have oxygen pushed in and carbon dioxide pushed out.  If there came a time when oxygen had to be turned off, she would know exactly what was happening.

She doesn’t want to.

So she isn’t going to use the BiPAP.  When her breathing gets so bad that she stops, she’ll just stop.  If they’re right about the carbon dioxide, she won’t have the same terrifying experience of suffocating.  She doesn’t want to live on a respirator.  I can understand.  I wouldn’t want to either.

I’m accepting this as best I can.  It reminds me more strongly that at some point, ALS is going to win.  Even if a cure was magically found now, the damage that’s been done couldn’t be fixed.  As much as I’d rather her stay around for several years or more, I’d rather she didn’t have to live in fear of how the end might come.  If she’s convinced that letting carbon dioxide build up is going to not only help her when she dies, but give her peace of mind before then, I can’t argue with that.  I just want her to be happy.

I guess that’s one of the things we all have to learn eventually.  The selfish part of me wants her around as long as I am, but I know my mother.  She has a definition of what life is.  And when I think deeply enough I realize it’s the same definition that I have.  I don’t think I’d want to be completely immobile, unable to breathe, talk or eat on my own, and live in constant fear of suffocation.

So there won’t be any more updates on how to use the BiPAP.  If anyone wants to use one and wants some advice, feel free to contact me and I’ll tell you how we used our for several weeks.  I don’t know how helpful I’d be.

It’s hard to describe the processes, thoughts and problems that can go on when someone finds herself in a motorized wheelchair.  It’s hard because we don’t go through it – the patient does.  While I can’t tell anyone that “things happen for a reason,” I do know that those happenings can be useful in the end when they happen to a caregiver.

A couple weeks ago, I got nailed with plantar fascitis in both of my feet, with some Achilles tendonitis thrown in on the right leg.  Mom had left her motorized wheelchair at the house while she went on a cruise, using one that was rented at her vacation spot instead.  So I got to spend a week using it and let me tell you, it was an experience.

For one thing, it was hard for me to be able to transfer myself to the shower chair, and I had full use of my arms.  My mother doesn’t.  It tired me, so I have a much better idea of how much it must exhaust her.  It’s hard to turn around in the hall, and sometimes not possible at all.  I’ve had to back up through the house a time or two, beeping the horn and hoping the cats had the sense to get out of the way.  Things I was used to getting for myself were out of reach and I had no clue how to get them.

When mom came back, I started using her manual wheelchair.  Turning around in the hall just doesn’t work at all in that thing.  Sometimes it gets stuck on a pebble.  Unless it’s small, I can’t hold anything and get around on my own.

All of this has given me a much larger perspective on what mom has to go through.  I found myself understanding a lot of things a lot better, which I think will make me an even better caregiver in the end.

It wasn’t all annoyance and heartache though.  I did manage to take the trash out by myself with the motorized wheelchair, and I’ve pretty much mastered everything I can do with the manual.  My arms are looking good and my neck is actually benefiting from the extra exercise.  There’s very little I can’t do now, even if it takes a lot of effort.  By trying to do as much for myself as possible, I’ve noticed that mom doesn’t have to worry about me as much, and she’s seen some changes in my general attitude.  It’s obvious I’ve learned a lot about her life, which makes this injury very worthwhile indeed.

I’d recommend any caregiver try to spend a week or two in a manual wheelchair, acting like your legs are totally useless.  The amount of things you’ll discover will be a lot more intense and useful than anything I could write in a blog.  At the very least I hope these words will make caregivers think about it a little more than they might.  Here I thought I understood it myself until I realized how much I just didn’t know.

One of the most nefarious things about ALS is that it never stops progressing.  You can have periods of “same-time” but inevitably things begin to move again.  It’s very easy to let yourself get lulled into a sense of security in those times because, while the disease is still progressing, it is doing so slow enough that you don’t notice it much.

Then you realize one day in one fashion or another that it’s gone farther than you thought.

Monday we found out that mom’s breathing capacity is now under 60%.  The doctors told her to use her BiPAP machine all night, every night – in case she stops breathing or isn’t breathing enough, the device will help out.  She also has to completely change her diet to small bites, no pepper, nothing really dry, no bread, and lots of moisture, like really juicy meats.  Plus, she’d lost five pounds, which means that, if she loses much more, she may have to have a feeding tube to make sure she’s getting everything she needs.

I had just settled myself in with her giving up her walker in favor of using the motorized wheelchair all the time.  Now, once again, I have to practice what I preach, and that always annoys me.

The absolute worst thing about caregiving for your parent is not living in your mom’s house again, not no longer having a place of your own, not delaying something or even giving up part of a dream or two for later dates.  The worst thing, far and above any others, is watching your parent decline.

I remember my mom playing tennis.  She loved to hike and raft and drive.  She still “hikes,” albeit on wheels, but obviously that isn’t the same.  There’s just something particularly upsetting about losing your breathing ability and a lot of your favorite foods.

You never can tell how fast ALS will progress or in what order.  You just have to live with it and live your best.  The problem comes when I want mom to be able to live MY best, do all the things I can.  In those times I just have to relax, adjust and figure out how to run with new situations.  It’s part of the process, unfortunately, and it won’t be the last time we’ll have to do it.

We now have a new machine in the house – the BiPAP.  What in the heck is a BiPAP?  “BiPAP stands for Bi-level Positive Airway Pressure. It is a breathing apparatus that helps people get more air into their lungs.” (Wisegeek)  Essentially it helps mom out when she’s feeling short of breath.

It’s an interesting little gadget.  It tells you how much you’re breathing, it will shriek like a banshee if it has to do more work than it’s supposed to (ie. if you aren’t breathing on your own) and it adds a lovely “strangled robot” sound to the room.  No worries though – it’s not distracting and you get used to it.  It even has a water tank so you can humidify the air you’re breathing if you feel so inclined.  That can help ward off dry mouth and dry throat.

The only problem we’ve had with it is the nose pieces.  Bird and Bear had to bring several different kinds but we finally found one mom is comfortable with.  For the person having to use one, it does take some getting used to, but mom was down with it after the first couple of tries.

A while back we put longer door knobs on our interior doors so mom could open them easier.  Lately she’s had a problem getting them to close because of problems getting the wheelchair to move well in our small hallway.  I bought a small clip and tied it to the door handle but the stress caused the door handle to pretty much fall apart.  To solve the problem (and not shell out a whole lot) we used the same setup but got a $1.50 hook to screw into the door.  Problem solved.  And it doesn’t look too bad.  With more time I’d tie it a little better for looks but that it works is what mattered.

Total handle

Caregivers deal with a lot of grief. There’s the grief of knowing your loved one has a terrible illness, the grief of being unable to fix it and, eventually, the grief of loss. This article is about how grief affects the bereaved and how it affects those close to but not directly involved in the situation, whether they are friends, coworkers or neighbors.

Experiencing Grief

Grief affects different people in different ways. Some are able to work through it fairly quickly while for others it takes a great deal of time.

Dr. Elisabeth Kubler-Ross, one of the premier researchers on death and dying, identified five primary stages of grief:

1. Denial (“This isn’t happening to me”)
2. Anger (“Why is this happening to me?”)
3. Bargaining (“I swear I’ll be a better person if…”)
4. Depression (“I don’t care anymore”)
5. Acceptance (“I’m ready for whatever comes”)

It is important for those going through this process and for those who know them to understand that you can not get to number five without going through at least parts of 1-4. The human mind needs those stages to fully cope with what is happening. If you miss every stage, you’ll end up going back to it later and slowing down your progress. Depending on who you are, you may go through more than one at once, but you can not come to acceptance automatically.

For those dealing with grief

Some of us have a hard time expressing ourselves. Some think they will be considered weak if they show pain and others don’t want to be a bother. The simple fact is that every person on this planet that lives for a reasonable amount of time is going to experience the loss of a loved one, whether it’s a parent, friend or pet. The very small percentage of people who do not understand someday will. So don’t feel afraid to feel. It’s natural.

Dealing with someone with an illness can be especially hard because you actually go through the stages of grief twice. First you have to come to accept the disease in the first place and later you have to come to accept death. Even if you feel prepared however, you can’t predict how you will react when death finally comes to someone you love.

There is one part of the grieving process not immediately acknowledged in Kubler-Ross’s five part list: guilt. Especially during the Anger stage, guilt can play a big role. You may feel guilty because you feel you could have been more helpful, said more kind words, been around more, or just for feeling angry at all. Guilt has no positive impact that I can think of in this situation. The reason these stages are so acknowledged is because they are human nature. You should not feel guilty about feeling something that is entirely natural.

Once you accept that you will go through many or all these stages, you can start to work through them. It is possible no matter how difficult it may seem, as long as you don’t try to stop yourself. Coming to accept the situation is the only way to move on. The pain will always remain to an extent but the first order of business after losing someone is to figure out how to keep living. That may take time but it’s a necessary journey.

Here’s an example of how not going through these stages will hurt you in the end: A friend of mine died tragically before her time, but I was so busy for the first several months after her death that I didn’t allow myself to grieve in any capacity. A year later it all came crashing back and even though the breakdown was hard, it was also a breakthrough. I was finally able to start getting past it. Once you lose someone you love, it’s my opinion that the best thing you can do in their honor is to live the best life you can. To do that you have to allow yourself the time to truly grieve.

For friends, acquaintances, neighbors, coworkers and others

Losing someone is one of the most painful things you can go through but it can be made better by others. If you know someone who has just experienced this, here are some helpful tips:

• Their moods may change dramatically. One minute, they might laugh hysterically and the next they may break down in tears. This isn’t your fault, and they just need some silent support. If the mood changes make you angry, just remember that they can’t help it. They are working through something that may take time to overcome.
• Anger is common. If they suddenly snap at you, don’t feel bad or get angry yourself. You are most likely not what they are mad at, but they needed the release. If you’re hurt by it and they don’t seem to notice, let them know kindly. They will most likely apologize but understand it isn’t personal.
• A lot of times, just being there is enough. Don’t worry if you don’t know what to say. A hug can say it all.

“Stealing” Grief

Because one must go through all five stages of grief, “stealing” it can be a problem, if not at all intended. When I say “stealing grief,” I’m referring to some sometimes well-intentioned habits that stop a person from going through the stages for a period of time. Here are a few ways you can steal grief, even if you have the best of intentions:

• Telling a bereaved person not to cry. Letting out the pain is a necessary function of progression. A person needs to expend that energy because if it isn’t let out, it doesn’t fade – it builds. “Bottling up” feelings leads to future break downs and bouts of depression. One of the best stories my Death and Dying teacher told us to illustrate this is about a woman who had just lost her husband. An acquaintance was there when she got the news. The women broke into hysterical sobs, screaming and railing against the world. The man simply sat there and stayed quiet, keeping his hand nearby for touch if it was needed. When the woman exhausted her tears, she hugged him and thanked him for his support. His presence was the strength she needed to allow herself to let go. She could free herself and know that someone was there to help her when she was ready. If the man had instead told her not to cry, the same pain would have come out later when she may have been alone and especially vulnerable. Sometimes just being there is the best thing you can do.
• Countering someone’s pain with your own. Everyone has either done this or experienced it. You just lost your mother and your friend tells the worst possible story about how hard it was for him to lose his father. This is a tough one because some people do want to hear those stories, while for others it only causes more pain. In my experience dealing with people who are grieving, I’ve decided that not telling those stories does far more good. Instead you can be there for them and when they’re ready to hear about how you got through it, they can ask. Most of the people I’ve dealt with only feel an increase in their pain as well as a renewed worry for their friend’s situation, no matter how far in that past that situation is. And some feel like you are telling them that their pain isn’t bad enough to worry over, which can lead to very bruised feelings.
• Telling someone it will be all right. This is a very well-intentioned idea. You want your distraught friend to know life will go on, but in my experience that person may not be ready to hear that. I can’t tell you how many times a bereaved person has exclaimed to me, “I wish they’d just stop telling me it will be all right! It’s not all right! How would they know?” Someone who just lost a loved one isn’t going to feel like the world is spinning properly until they decide that it will. Some also take this phrase as an admonishment that they shouldn’t be upset because things will get better. Someone experiencing loss can not be told that they are not allowed to be upset, because there is no way to stop those feelings. I know that when people told me things would be all right after my mother’s ALS diagnosis, all I could think in my mind was, “Yeah right. Your mom doesn’t have an incurable disease, what do you know?” Even though I knew those people were only trying to help, it was natural to buck off their advice.

Children, death and honesty

There are a lot of opinions about whether or not children should be told when a parent, friend or other loved one is seriously ill but the medical community by and large agrees that honesty is the best policy. Children are extremely aware and can tell when something is wrong. If you lie to them, they will come up with a reason for mommy’s tiredness on their own and it will most likely be worse than the truth. If children aren’t told what is going on, they may feel extremely betrayed later on, or at least resentful because they know something is being hidden from them.

Kids will have a lot of questions. The answers will help them deal with the situation. They need to know that mom or dad’s illness is not their fault – they are very likely to believe something they did caused it and they need reassurance. They are also moment-by-moment sort of people so they may ask the same questions more than once.

There’s a very succinct article on talking to kids about illness at Growing Kids.

In Conclusion

Grief can be exceedingly difficult for the bereaved and the people they know. It can be dealt with and you will survive. After all, what happens to us doesn’t define us – how we deal with it does. Make the most out of your life and you will do a great honor to those you miss.

One of the hardest things for me to do, besides coming to terms with mom’s ALS in general, was to learn what I needed to do for myself.  Being a caregiver can be a wrenching experience but there are a few things you can think about that may help.

1.  You’re allowed to be ticked off and frustrated.
It was hard for me to accept the anger that came several months after mom’s diagnosis.  I was angry at ALS itself, angry at the doctors for not being able to fix it, angry that my life had been altered and angry at myself for being angry that my life had been altered.  I had to talk to several professionals before I would come to terms with those last two in particular.  It’s not only natural to be angry at the illness and the doctors for not being able to cure it, it’s also natural to feel anger about what’s changed for you.  You are human after all.

In my own personal experience, I’d save several thousand dollars so I could move to California where my friends lived, and was really looking forward to it.  Suddenly, I realized I needed to stay home to help mom, and I spent all that money and more converting the garage so I could have a nice big personal space to myself.   Now I couldn’t afford to move even if I wanted to.  I had major anger issues over this – not so much at mom, because I knew she couldn’t help it, and not even as much at the situation.  I was angry the most about the fact that this angered me at all.  Why couldn’t I just accept that I was needed and make the most of the situation?

Because I’m normal.  We humans tend to want things to go the way we’d planned and it’s jarring when roadblocks come up.  It was especially hard because we had a roommate at the time who made living in the house close to unbearable.

So how did I fix the anger problem?  First, I took a stand and got rid of our lazy and aggravating roommate.  That helped a LOT.  But mostly I discovered some very important things:

• I shouldn’t be angry at myself for naturally being angry at what was happening.
• Anger I felt toward my mom wasn’t actually directed at her – I was mad at what was happening to her, not at her.  But the brain sometimes tries to find a human face for it because it’s hard to focus anger at something you can’t even see.
• Even though I’m 29 now and most people would consider this the time I should be out doing other things, I can’t.  That’s something I had to come to terms with.  I changed my thinking to say, “I’m ONLY 29.  I have time.”  The here and now is not about me, it’s about the person who made me who I am and gave me just about everything I have.  I would rather have given back to her way farther down the road but that’s not the way things worked out.
• It’s important to live now.  Don’t look at your life as something that will start later – because the only way it can start later that was is if your loved one is gone.  That’s a painful thought to contemplate, and thinking “I can do this after that” just makes you angry with yourself again.  Instead, live now, for yourself, while you’re helping somebody else.  I don’t think about it as missing out on being in California.  I look at it now as having a life and having fun here.  My life will be different eventually, but since I want mom around as long as possible and she’ll need me for that entire time, I can’t get bogged down waiting to live.  If I don’t live, how can I help her?

2.  You’re allowed to be sad sometimes.
ALS is a terrible disease that causes a person to physically decline.  It’s not only sad for them, it’s sad for those caring for them too.  You might think you have to “stay strong.”  That’s all well and good but if you don’t let it out sometimes, it will kill you.  Every now and then I just have to break down and cry, and it’s usually triggered by something tiny, like my cat sneezing or something.  I’ll just go in my room and let it out for a while.  It’s very refreshing and lets you get past that bit and go on with what you need to do next.

3.  You deserve some fun too.
It’s very important to make sure your loved one has fun things to do within their capabilities.  My mom and I love to have our Saturday “Friends-a-thon,” where we go through a disc or two from the Friends series (and there’s a LOT of them).  But it’s also important to have some fun yourself.  This is one way that building a caregiver network will be a big help.  Find caring people who are more than happy to step in for you sometimes and arrange for YOU moments.  Go to a movie, go see some friends, take a short trip, whatever.  Don’t lock yourself in the house and think your life can’t move forward because that isn’t healthy.  And if you aren’t healthy in the head, it will seep out and hurt your patient too.

4.  Take care of your body.
I’ve learned that a great way to clear the head is to clear me, period.  Personally, I like karate.  I don’t take classes, I just go through the motions in my room, but it works up a sweat and lets me focus on something else.  Being caring of your body also can inspire your patient to not give up on whatever they are doing to help their bodies.  Do some yoga, get a Gazelle, sit in a far infrared sauna, do some karate, go running, whatever.  Keep the blood flowing.  Body weight exercises (using your own body weight instead of actual weights) and parts of combat conditioning not only get your heart going but also make your stronger and more agile, which will help with body mechanics.  I have a great book on body weight/combat conditioning.  There’s one for men (Pushing Yourself To Power) and women (Every Woman’s Guide To Personal Power).  I also have Best Karate to help me out.

That’s all for this blog.  Check out my other blogs and upcoming ones for what pops into my mind next.