Dragonfly Publications

Blog: Caregiver’s Guide for Getting Through the Holidays

The holidays can be a stressful time for many people. Holidays can be especially stressful for people with Alzheimer’s disease. It can also be a difficult time for their caregivers. Dementia patients have a routine, need a routine to cope with day to day living. Any interruption in that routine can cause major set backs. During the holidays, there will be interruptions. With family and friends coming by, excited children running around, Christmas music playing everywhere, flashing lights, different smells and different faces, these things are bound to cause some anxiety for the person with AD and in turn will cause stress for the caregiver. The first and most important lesson a caregiver needs to learn is to take care of yourself first. I know I have said this before and now you are saying to yourself, yes, right, I hear you but in reality how do I do that when everyone around me needs me? The answer is you have make the time, find the time, treat it like it is just as important as giving your loved one his or her medication. If you don’t make time to take care of yourself, your body will take the time for you, with or with out you having any input in the decision.

On Christmas Day 2007, Rose and I had just finished hosting our family’s Christmas day brunch. Since Mom was unable to host the holiday events any longer, as the oldest sibling I felt it was my duty to take on the tradition and host my family. That morning, I woke up with a splitting headache and despite taking two Advil a couple of times during the day, the headache seemed to get worse as the day went on. I brushed it off, thinking it was probably a result of lack of sleep and the extra hustle and bustle of the holiday season. In the back of my mind though there was a little voice in side of my head telling me that this may be a sign of something more serious.

The last of the relatives left at 7:00 p.m. After a vigorous round of “Where’s my lighter-where’s my purse?”, I took Mom home and got her settled in for the night.

When I got back home, I was helping Rose clean up the kitchen. But my head hurt so much now that my vision was blurred and I felt sick to my stomach. I sat down at the kitchen table and rested my head in my hands and told Rose I wasn’t feeling well. Then I burst into tears.

“What’s wrong?” Rose asked.

My body trembled and my head pounded.“My head…I’ve never had a headache this bad. I think I need to go to the emergency room.”

Rose, knowing that I never complained about much, especially not feeling well, figured that when a nurse says something like that, it’s serious. So without hesitation, she put me in the car and took me to the hospital. When we got to the emergency room, the first thing they did was take my blood pressure—it was 160/100! My normal blood pressure ran about 90/60, so this was abnormally high. Now I was convinced that something serious, a stroke or an aneurysm, was the cause of my elevated blood pressure. I was terrified that something terrible was happening and I was also angry that I had no control over it. Why is this happening now? My mother needs me! My family needs me! Those were the thoughts running through my mind a mile a minute as they wheeled me toward radiology for a CAT scan of my head. When the tests was finished, a radiology tech wheeled me into a curtained cubicle to await the results. As we waited for the results, I went over in my head everything that needed done that was in danger of not getting done: Mom had an appointment with the rheumatologist on Monday and the podiatrist on Thursday. I needed to get a refill on her Aricept and Seroquel before she ran out a the end of the week. Rose’s mom had an appointment with her oncologist on Tuesday. But we needed to get her lab work first so we would know if she would need yet another blood transfusion before she received more chemo. She also needed groceries and bag lunches put together for the week. Because neither Rose or I could leave work to make her lunch during the day. It was also year end and I needed to close out the books for our business and get things in place for the new year. The more I thought about all the things that needed done and the chance that I would be incapacitated and not able to do them, the sicker I felt.

Twenty minutes after my CAT scan, the emergency room doctor stepped inside my cubicle.

“Your CAT scan and lab work are perfectly normal,” the ER doctor assured me after all tests had been completed.

Instead of feeling relief, I looked up, bewildered, my head still throbbing and asked. “So what’s going on? Why is my pressure up and why do I feel so lousy?”

“Have you been under a lot of stress lately?” he asked.

“Nothing I can’t handle,” I answered.

The ER doctor looked at me over the metal chart in his hands. Suddenly a light bulb went off in my head. Maybe I couldn’t handle the stress of caring for everyone as well as I had thought.

Stress takes its toll on our bodies and our minds. Unfortunately, the holidays, which should be fun and exciting, can add extra stress to our already stressful lives. I never realized until that moment how much stress managing Mom’s care, helping Rose take care of her mother, and trying to hold down a full-time job had caused. There was no time to contemplate how I was feeling, I had others that depended on me, seriously ill people who could not care for themselves any longer. So I did what many caregivers do: I put my head down and plowed through the doctor’s appointments, medication changes, explosive diarrhea brought on by those medication changes, urinary tract infections, looking for lost eyeglasses glasses, lost shoes and lost keys for the hundredth time. Dealing with behavior issues and temper tantrums requiring the same skill set as a hostage negotiator as well as middle of the night emergency room visits for fever so high it brings on hallucinations or bronchitis on the brink of turning into pneumonia. Some of these things all happening in the same day.

I surely didn’t think I would be the one to land in the emergency room- but here I am. How was it that I had always been able to manage things like this before, but couldn’t I do it now? This is ridiculous, I thought as I laid on the gurney in my hospital cubicle. I must not be trying hard enough. What a slacker!

The doctor gave me medication to lower my blood pressure and a prescription for Xanax. Within an hour my blood pressure was coming down, the headache felt more like a hang over now, and in spite of the embarrassment I felt coming here for what I now felt like was nothing, I was feeling better. I took the prescription for Xanax home but didn’t get it filled. I was sure I didn’t need drugs in order to cope with my life. I’d figured it out on my own like I always had. I thought having to take medication was a sign of weakness, and I was tougher than that. -Two weeks later, I found myself curled up in the fetal position on an exam table in my doctor’s office experiencing the worst panic attack of my life.

Don’t be stubborn like me. Pay attention to the signs that you need a break:

1. You can’t remember the last time you felt happy.

2. You are exhausted, but can’t sleep.

3. If you do sleep, you dread waking up in the morning.

4. Feel only anger towards your loved one or lose your temper frequently.

5. Experiencing physical symptoms like headache, heart palpitations, shortness of breath, choking sensation or shakiness.

Any of these symptoms may be a sign that you need a break. Depression is a real threat to caregivers. Caregivers are high on the list for developing depression. It’s important to remember that depression is a medical disorder that can be successfully treated. Depression is not a personal weakness, nor a sign that you are unable to care for your loved one. It can be a sign that you are running out of gas and need a break or need to find a different way to do things. Taking care of yourself is the foundation that will give you the strength to care for your loved ones.

During the holiday season, take advantage of others being around. Ask family that are visiting if you can step out for a while to run errands or anything else you want to tell them in order for you to get away for a while. Not only will it give you a chance to take a breather, it will give them direct insight into what you down twenty-four hours a day- seven days a week. This may prompt them to become more actively involved in their loved one’s care or it may scare them off all together. Either way, its worth a try and you will know who you can truly count on and who you can’t. No chance at leaving the house? Find a safe room. I can’t you how many times I have locked myself in the bathroom or have gone into the garage and sat in my car just to get away for a while. Sometimes you gotta do what you’ve gotta do.

The holiday season will be here and gone before we know it. That maybe good news to most caregivers. Try not to let the added stress ruin any chance for joy and the opportunity to make new and pleasant memories with your loved one. Any one who is caring for someone with Alzheimer’s dementia knows how progressive this awful disease is. Next year, things may be a lot different that this year. We are losing our loved ones with every passing day. There is not a holiday or birthday that goes by that I don’t wish I had one more with mom. It’s important to cherish the time we have left with them. Take time away from the crowd for you and your loved one. You may be the only familiar thing for them in the holiday chaos and not the only one who needs a break from the crowd. It will be a comfort to them and may turn into a treasured moment for you as well.

Happy Holidays