Emergency Plans are Crucial for Caregivers


Something happened recently that really has worn on me. My wife was deathly sick. She has suffered with a disease since she was 17 years old and experiences flare-ups from time to time.

We have dealt with them for years now, but last weekend she was worse than usual. That is what it seemed to me at least. When someone you love is sick or injured, you feel helpless. You try to do everything you can for them.

I also found out something that my own disease causes; I literally felt useless. What could I do? I told her Friday evening that if she didn’t improve, we were headed to the emergency room first thing Saturday morning.

She wasn't any better on Saturday. In fact, she was probably worse. But she assured me she would be alright and just needed to stay in bed and sleep. We did what we always do when this happens: make sure she gets additional medications she needs and let this run its course.

But last weekend was very scary for me. As a dementia patient, I felt firsthand how helpless I was. I think I may have slept two hours all weekend. I checked on her constantly, and spent a great deal of time sitting in our front room just wondering what to do.

Normally, I understand what this is, and I realize that this has happened many times over the years, but this time, for whatever reason, was very difficult for me.

I wanted to share this experience to point out that, in some cases, when the spouse or family member of a dementia patient becomes ill, try to pay special attention to the one they care for as well.

I thought very long and hard before writing about this. I have thought about it, and many times thought this sounds very inconsiderate of me to be worried about what I was going through when she was as sick as she was.

But it is indeed a very, very scary thing for the dementia patient when their primary caregiver is incapacitated. Phyllis June was much better Sunday night, but I was just as scared then as I was on Friday night.

I knew we were close to having her hospitalized, which has happened in the past as well. But the very thought of this scenario had me scared to death. We seldom think of what to do in situations like this, when a spouse or whoever becomes sick, is injured in a car accident, or somehow incapacitated to where they are unable to do what they normally do for the patient.

I am pretty self-supportive so far. I don't need someone looking after me around the clock, but the mere fact that she wasn't able to tell me what day it is, what time it is, what I was supposed to be doing, etc., was horrible.

As a patient, I can tell you that we depend on someone, even if we don't communicate that. I talk all the time about routines and how important it is that patients stick to their daily schedule, even if you don't realize they have one.

My main routine is the most important thing to me—more important than each breath I take. My wife is my routine, and I cannot fathom life without her. We all feel this way about our spouse, parents, kids, etc.

But once again, what we just went through with Phyllis June being so sick was a real eye opener for me for some reason. I found myself sitting around worrying about what I was going to do. I have never put myself before my wife before. This disease did that. It had me so concerned about what I was to do for her, and anxious over whether she needed to be hospitalized. I thought I was being self-centered, which is something I never have been.

Phyllis June is back to normal as of last night. This will no doubt happen again. In addition to our normal care plan, we will need to have some sort of emergency plan in place regarding actions I need to take when this does occur again.

And then, of course, we’ll probably need to have another plan at the ready. There is always a considerable likelihood that your Plan A will not work in these scenarios. This is something I hope each of you think and talk about before something like this happens in your immediate family.

No doubt, when this happens again, I will not remember the fear I went through the last time, nor will I realize that things will be alright. Dementia does this. I will not recall that things always get better when she has these flare-ups. I will only know that I cannot do anything to help and have that same helpless feeling again.

Be sure you have a plan in case, for whatever reason, you are not able to care for your loved one, be it for just a day, a week, or however long. Life happens. But as I have said many times, we are not capable of living in your world anymore. Family members and caregivers must live in ours. As selfish as this may sound, we need to have things kept as normal as possible, even when things are indeed chaotic.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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Thank you for this eye opening article. Thank you for being honest and candid. I am caring from my mom in a completely different state then all my family. I need to ask if someone would be willing to come care for her or if she would need to go to a facility.
Yea, I've thought about this, also. I'm the caregiver. Hubby needs the routine. Right down to bathroom issues that happen about 2 or 3 times a week. He's never had anyone dress or give him his meds. His Daughter, who lives with us, (we're a blended family) sort of knows but is in denial. And she "freaks out" easily. We have a caregiver; and she comes in two mornings a week. If I got sick, don't know if she could come in quickly. Question for her next Wednesday. Hubby's DIL would be the best one as she's a head on her shoulders and lives locally.

Like I say, I've thought of this.
What a challenge for you both. I have to say, I don't think it was selfish of you at all. Because she needs you to be there for her, just as you need her. So taking good care of yourself is a gift to her AND her taking good care of herself is a gift to you. I know if my senior mom and I were dealing with that and it was me that was so ill, she would be beyond terrified. I'm blessed to have one child nearby that could help along with others at a distance. But it is good food for thought for us as well. Thank you for sharing this. Praying for y'all!