Dementia isn’t a disease that hits all at once. It is progressive and often goes undetected in the very early stages. People adapt to small changes in memory or believe it is simply another sign of aging. Often, someone is embarrassed to tell friends and family they have a problem until it is impossible to ignore, leading to the need for difficult choices to be made on behalf of all involved. Julie knew she would be there should one of her parent’s need help. She didn’t know how soon it would be her reality or how deeply it would affect her.
As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of PTSD (Post Traumatic Stress Disorder). Even someone who never went to war can be deeply affected by these annual displays. The flashing lights and changing colors in the sky can trigger fear leading to aggressive behavior that can be dangerous for the caregiver and their family member. Between the community events and backyard enthusiasts, the noise and confusion can often go on for hours. While some are calling for the ban of fireworks all together others are reluctant to do away with the long held tradition that they grew up with. It’s not an issue that will likely be resolved soon. However there is some good news. Many communities are becoming more aware of the impact fireworks have on those with dementia and are taking steps to minimize the impact by using quiet fireworks that focus on colors and effects rather than sound. It may not be a complete fix but it’s a step in the right direction for many.
If that is not the case in your area, here are a few suggestions that may help make things less stressful for you and your family.
Talk to the person in your care about the holiday and what it means to him or her. Listen to their stories of picnics past and how they showed their pride in their country.
Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
If you live near a place where you see and hear fireworks from your home, you should prepare them for what will happen. They may not remember later but you never know what will help on day like this and it’s worth a try.
Early in the day may be a good time to show them a video of fireworks. There are a number links of the displays available for viewing on social media. Turn the sound off before showing it to the person in your care. Explain that they may see these lights in the sky later that night and you will sit with them until it’s over.
If even the silent display is upsetting, close the blinds and drapes in their room before sunset to block out the flashing lights. Play music he or she likes using earbuds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music anyway and sing or dance along with it to distract them, they may even join you.
Behavior is communication and their actions always include clues as to where they are and how they feel. It is when we enter their world rather than insisting they live in our reality that true understanding comes to us, the caregivers.
Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, and national speaker on caregiver issues. www.bobbicarducci.comwww.theimperfectcaregiver.com Twitter:@BobbiCarducci2 Facebook: https://bit.ly/2FXw3JP
So often as a caregiver I felt overwhelmed. What did I miss? What could I have done different? Where did I fail him? I’m quite sure you are not much different. I’m not going to tell you not to feel that way. It won’t change anything. It seems that second guessing ourselves is part of living with these terrible diseases. What I hope to do is help you through it. One the hard days, and there are many, try to remember this, “more action is not needed to create order and peace.”
Go quiet, even if it’s just for a moment, and know you are doing the right thing,
We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.
“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.
As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast. I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.
I had to learn that he was often secretive and hid his symptoms when ill or in pain. Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening? What happens when mental illness and dementia combine? Would he harm himself? How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?
I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which. The fact is he tried hard to fool them and often succeeded.
“She’s crazy,” he would tell them. Often it was close to the truth.
I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration. When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.
Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.
Caregivers, often do you hear those words from family members trying to justify avoiding your loved one. For refusing to help even long enough to give you a few hours or days of respite? They may feel that upon hearing those reasons we will understand that they would like to help but they simply can’t.
Unfortunately, what they are really saying is:
“It’s too hard and it doesn’t matter how it affects anyone else. It’s not about Mom or Dad. It’s not about our brother or sister. It’s about me and how I feel.”
Some common comments and my responses follow. As the Imperfect Caregiver I speak for you so you know you are not alone.
“Mom doesn’t know me anymore so why bother visiting? When I do come by all she does is repeat the same stories over and over. It’s boring and irritating. I can’t take it.
“I feel that way sometimes too. That’s why I need your help. Why can’t you understand that?”
“She was up all night for the past two weeks and you desperately need sleep? Take a nap during the day when she does. What’s your problem?”
“It’s not safe. If she wakes before I do she could leave the house and wander away or decide to cook something and forget it on the stove causing a fire. Could you nap under those conditions?”
“He’s combative and accuses you of stealing from him? What did you do to set him off? What do expect me to do about it?”
“I didn’t set him off. The disease did. I don’t expect you to fix it. I need you to understand what this terrible disease is doing to him.”
She seemed fine to me the last time I visited.”
“If that’s true and she is fine,why don’t you come more often? Why are you too busy to give me a break?
“My father would never use language like that! Why would you say such things about him? I think you’re the one who has a problem.”
“Yes, I have a problem. It’s trying to deal with all this and you too.Would you like me to tape record him for you?
“A nursing home? Never! I promised Mom we would never do that to her.”
“We also promised to take care of her. When did “we” become only me?”
“If things are so bad put her in a nursing home. What do you mean you need help to pay for it? What about her social security and Medicare?”
“The facilities that would take her for what little she receives are full with long waiting lists and you clearly haven’t seen what goes on in those places. Someone would have to be there every day to make sure she got the care she needs and we know who that would be.”
***
Feel free to share some of the comments you hear from family members in the comment section below. It helps us all to know we are not alone.
Sometimes prayer was the only thing that got me through the long days and nights of caregiving. Too much stress, too little sleep, very little help, all piled up and sapped my strength and I turned to prayer. In one form another my cry was always the same, “I need help. Please send help.”
And He did. In His time and in a way that may have been unexpected, help arrived.
For all the caregivers close to the end of their stamina, I send out this prayer.
“Hear my cry, O God; attend unto my prayer.
2 From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.”
It is also a time to support the men and women who are currently caring for a loved one at home. You may have offered to help many times only to be thanked politely for the thought and never taken up on your offer. Some of you may have started to wonder if she really wants help. Maybe she prefers to play the martyr and do it all herself and whine about how hard it is in order to make you feel guilty.
“Why should I keep offering if that’s the way it’s going to be?” you may have asked yourself.
The answer is, “Because she needs help. She wants help. If she doesn’t get help she is going to break under the pressure.” Often she doesn’t know what to ask for.
When my husband and I first announced we were bringing his ill father to live with us, many well meaning people assured us they would be there to help when needed, and they meant it. I remember saying, “We are going to need some time off once in a while so we can go on vacation or out to dinner. It will be great if I can call on you then.”
“Of course,” was the answer, and they meant it.
I didn’t know then that going out to dinner or taking a vacation would not be what I would come to need most. As my father-in-law’s illnesses progressed what I longed for was an hour to take a long hot shower or to soak in tub of water up to my chin until my fingers and toes turned pruney. I’d have done just about anything to stop listening for signs he was in distress or that he somehow knew I wasn’t paying attention and had decided to go down the stairs unattended, risking a fall. Even an uninterrupted ten minutes on the toilet would have been a gift on some days.
I remember one morning in particular. He’d had his breakfast and I had helped him wash and dress. I’d seen to it he had his medications and the TV was tuned to his favorite show. He should have been good for at least thirty minutes. I was about to start a load of laundry when my I felt the sudden urge to pee. I had just settled on the toilet when I heard him calling.
“Bobbi! Bobbi! Come quick, I need you!”
He sounded so frantic I was afraid of what I would discover when I got to him. I jumped up in mid stream, pulled my pants up, and ran up the stairs.
“What’s wrong?” I asked, ignoring the warmth running down my leg.
“The TV’s gone berserk. I can’t get any channels.”
I bit my tongue, fixed the TV, and went to my room for a quick wash up and change of clothes. Clearly it was going to be one of those days.
If anyone had asked what I needed that day the answer would have been quick and easy.
“I need a bath.”
November is National Caregivers Month. The gift of time is precious for those for whom every moment counts. When wondering what you can do to help, consider stopping by a caregiver’s home someday. Maybe she’s wishing for a bath too.
The Imperfect Caregiver 
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