I Don’t Like You!

I don't like youWhen it’s one of those many very bad days and you the person you are caring for is pushing every button and grating on every nerve it’s natural to feel resentful and truly dislike her or him.

It’s okay to feel that way. Most of do more quite often thorough this life changing time. However, anger and resentment take a toll on us mentally and physically.  It’s exhausting to deal with all that emotion on top of everything else you do.

What is a caregiver to do on days like that?

  1. Walk away from the person in your care.
  2. Go to a quiet place. Go to the bathroom if that’s the only place you can be alone.
  3. Take a deep breath, let it out slowly. Repeat, Repeat. Repeat. Keep repeating until you feel calm.
  4. Think of one of the very best days you ever had with your caree. Picture it in your mind. When you are ready, perhaps when you being to smile, or cry, or simply wish for that day back, go get a cup of coffee or a glass of water.
  5. When you are ready – share that memory with your love one. Hold his or her hand if they are open to it. If they are not in a mood to share just then, it’s okay. You took a bit of time to take care of you. And maybe you have planted a seed in your caree’s memory that will take root later and give them a precious moment as well.

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Fireworks and Sundowning – Not a Happy Fourth of July

fear of light

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.

  1. 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.
  2. Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
  3. 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.
  4. 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.
  5. 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.com www.theimperfectcaregiver.com Twitter:@BobbiCarducci2 Facebook: https://bit.ly/2FXw3JP

 

 

What’s Love Got To Do With It?

broken heart

When it comes to care giving, sometimes love doesn’t enter the picture at all. People with dementia behave in ways that try us to our very limits. Waking each morning wondering what new hell this day will bring causes anxiety, resentment, grief, and anger.

You may have loved your parent, your spouse, your sibling, or your grandparent for many years, but when dementia takes over and the person you knew is gone, replaced by a stranger trying to escape from you, refusing to bathe, and accusing you of all kinds of terrible things, love can be forgotten. Sometimes it’s gone for only a moment or a day or two. Sometimes it dies leaving duty in its place and we grieve while they still live. Sometimes we pray for the end to come and are overwhelmed with guilt for even thinking such a thing.

However, it’s not death we wish for, we don’t really want that.  We wish for the pain to end.  Theirs and ours.

It is because we care that we started this journey.  It is because we care we carry on when we think it’s no longer possible, even when we wake up each morning wondering what new hell this day will bring.  For deep inside they remain who they once were and so do we. We rise and enter their world ready to keep them safe another day.  And that’s what love’s got to do with it.

Please share your thoughts in the form provided

A Teen Encourages Others to Help

The following is a guest post by  Minaal Khan, an 11th grade student at John Champe High School in Aldie, VA.

As teenagers in the age of technology, we need to be less materialistic and spend time with people as well as our favorite devices. People are who make the world a better place and who provide beneficial social interactions. We need to stop ignoring people and start using devices less often. Helping people can make you a better, worldlier person. This will make you truly appreciate the world. Hearing about someone else’s life can inspire you and may even change you for the better.

Teenagers need to start giving back to the community and helping others. We are at the age that will define us as adults. If we do not start giving back now, we will never do it as adults. We need to be thankful that we are healthy and appreciate what the generation before us has done to ensure that we are raised properly. They left us a great world that we can make even better by spreading kindness and selflessness. Everyone deserves to have someone help them when they are in need, so we should be kind and care for people who may have neurocognitive disease.

Caring for people with Alzheimer’s helps you feel accomplished as you do something good in the world. It also reassures the person you were caring for that there is hope and kindness left in our world when so often all we see on the news is violence.

Caregiving is an act of kindness that the other person will remember and builds self-esteem. It does not require you to sacrifice several hours, you can also spend time with your friends or family.

Helping someone who has Alzheimer’s will also help the family of the person who has Alzheimer’s because they will know that someone is taking care of their loved one. They will not have to worry about finding a reliable caretaker which increases the cost of care.

Caregiving is extremely rewarding and can change the lives of many people, the caregiver, the person with Alzheimer’s, and the family of the person with Alzheimer’s. It also gives you a sense of accomplishment because you have made a change in someone’s life. We need to help others as much as we can.

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

Welcome the Ghost of Christmas Past

Christmas is often a time of sorrow for families of those with any of the many forms of dementia. Often family and friends have stopped calling or visiting. Family relationships break down as one person provides daily care.

You may decide it’s just not worth it and spend the day trying to block out memories of happier times. I get it. But consider what may happen if you embrace the past for a few moments. You may be surprised by what your loved one remembers.

Welcome the Ghost of Christmas Past. Forget about putting up a tree if you don’t feel up to it. Don’t bother with a special meal unless someone delivers it to your door hot and ready to serve. Instead open the old albums and put out the oldest, most treasured ornaments. Play all the old Christmas carols. Cry for what is lost. Cry until the tears no longer come. Then, if you can, welcome the ghost of Christmas Past. Allow him to illuminate the memories you most treasure and share them with those in your care.

The image below is from Disney’s, A Christmas Carol, where the Ghost of Christmas Past appears as a candle illuminating events that formed the person Scrooge became.

ghost_of_christmas_past

Push aside the present and feel the love you shared on all the happy times you shared if not for the entire day, at least for a moment. The love and laughter you shared may be the most precious gift you receive this season.

One of my favorite treasured Christmas decorations from childhood is also a candle.

single-choir-boy-candle

This little guy, once part of a set of five, appeared in our home a few days before Christmas when I was eight years old. Upon our mothers passing in 2002 my sister, three brothers, and I each took one. Mine is now lopsided. His face is grimy from years of being packed away in newspaper, and his robe has a chip in it from being dropped a time or two. Despite the abuse he has endured over the years, he is far more precious than the thirty-five cents stamped on the sticker that still clings precariously to his underside tells us Mother paid for him.

If you have a favorite memory of Christmas past shared with the one in your care, feel free to post it in the comment section. I’d love to hear from you.

What Adult Children Need to Know About Alzheimer’s/Dementia

Prepare to Care -What Adult Children Need to Know About Alzheimer’s/Dementia Before and After It Strikes Home

What a great group I had for the debut presentation on October 8th. Right from the start these caring young adults indicated how interested they are in learning more about these dreadful diseases and how to prepare for what may be coming to their families.  The questions and comments kept coming throughout the presentation.

When I became a caregiver I knew it would be hard. But, I had no idea of how difficult it would become, how long I would be doing it, or how much it would change me.  Because of those seven years I have become a caregiver advocate. For those who are caregivers now, I facilitate a caregiver support group and I write this blog. I wrote a book about my experience caring for my father-in-law, a book that has been called brutally honest and portrays me as flawed as I truly am. I wrote it to show people what it’s really like to be a caregiver.   As meaningful as these things are to me, I want to do more to make life better for caregivers and those in their care.

 It is now part of my mission to help adult children Prepare to Care. Although we touched on some very frightening and emotional possibilities you can see from the photo below that the result was a positive one as each participant left more informed and better prepared to face the tough decisions they will be called upon to make in the future.

prepare-to-care-2

The Imperfect Caregiver is second from the left in the second row. Her daughter, who is now learning all she can to Prepare to Care, is second from the right in the second row.

While many families now provide home care for relatives and loved ones, the number is expected to significantly increase in the coming years with the aging of the Baby Boomers. According to the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months (National Alliance for Caregiving and the AARP)
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

Employers  and civic group leaders interested in arranging a presentation to their employees can reach Bobbi Carducci at bcarducci@comcast.net.

 

Four of the Saddest Words Ever Spoken

She doesn’t remember me.

I hope my children never have a reason to say them. But it could happen. If it does I hope they understand that even in my confused mind they are still a part of me.

By the time I reach that point I will have lost much already.

My short term memory.

My rich vocabulary.

My love of long, hot showers.

My ability to cook.

My driver’s license or even how to find my way home if I did still have that privilege.

 

I pray I’ll still have the ability to read and understand the words my favorite authors have so painstakingly crafted. A world without books would be barren indeed for someone who loves to read as much as I do.

Alzheimer’s or some other form of dementia will have taken me somewhere back in time.

Perhaps I am reliving my days as a busy young mother and you, my darling daughter or son, are still in elementary school. You have not yet grown into the wonderful adult you will become.  I see you pink cheeked and out of breath after running up the steps, opening the screen door, and calling out, “Mom, I’m home. Guess what I got on my spelling test today!”

It may not seem like it in the moment but the memory of you is deeply implanted in my heart. The heart that beat so close to yours during the time I carried you. The heart that cried with you when you were hurt and rejoiced with you when you achieved a goal.

If the day comes when I look at you and ask, “Who are you?” I hope you will smile, give me your name, and tell me about your mother.

I love you. I pray you never forget that.

Dr. Phil: Please help support caregivers via the Dr. Phil Foundation. Caregivers are in desperate need of respite and you can help make it happen.

Caregiver Support Coming to Purcellville, VA

I’ve been away from the blog far longer than I planned. However, being a caregiver and all that entails is never far from my heart and mind.  One of the most important and meaningful things I’ve been doing while away from the keyboard is training to be a Caregiver Support Group Facilitator through Alz.org.

Here are the details of where and when this group will meet.

Caregiver Support Group, Purcellville, VA, 20132

When: Thu, April 28, 3pm – 4pm
Where: The Carver Center, 200 Willie Palmer Drive, Purcellville, VA, 20132 (map)
Description: Alzheimer’s Association Support Groups Alzheimer’s Association support groups provide a place for people with Alzheimer’s, their caregivers, family members, and/or friends to share valuable information, caregiving tips and concerns throughout the Alzheimer’s journey. Groups are facilitated by trained leaders and are ongoing, free and open to the community. Please call our 24/7 Helpline (800-272-3900) or contact the facilitator directly for more information and to confirm date and time. The Carver Center | 200 Willie Palmer Drive, Purcellville, VA, 20132 | Bobbi Carducci, bcarducci@comcast.net

For information on where to fond a support group near you go to: http://www.alz.org/nca/in_my_community_support.asp

If you are a support group facilitator I’d like to hear from you. Perhaps you’d be willing to share resources or tips on what your group finds useful. If you attend a support group I’d love to hear about how your group has helped you.

A Call for Help For Caregivers

Below is a link to an article in the November/December Issue of Virginia Woman Magazine (Loudoun) titled A Caregiver Near You Needs Help.

Feel free to share the link as you see fit. Who knows, it may make a difference for someone.

http://issuu.com/virginiawomanmagazine/docs/loudounnovdec2015highresnobleeds/17?e=17049404/31065692

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