13 Jan 2017
in Dementia, family issues
Tags: Alzheimer's disease, Caregiver Support, sandwich generation
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.
08 Jan 2017
in care giving, Dementia, home health care
Tags: Alzheimer's disease, caregiver advice, Caregiver Support, elder care, Lewy Body Dementia, Parkinson's Disease, Senior Health
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.
12 Dec 2016
in care giving, Dementia, family issues, women's issues
Tags: Alzheimer's disease, Caregiver Support, Lewy Body Dementia, Parkinson's Disease, precious moments, Senior Health
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.
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.
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.
12 Oct 2016
in care giving, Dementia, family issues
Tags: Caregiver Support, help for caregivers, Prepare to Care
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.
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 email@example.com.
18 Apr 2016
in care giving, Dementia, family issues, sandwich generation, women's issues
Tags: Alzheimer's disease, caregiver advice, Caregiver Support, elder care, Senior Health, sundowning
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.
13 Apr 2016
in Dementia, family issues, home health care
Tags: Alzheimer's disease, Caregiver Support, elder care, help for caregivers, Lewy Body Dementia, Open Books Press, Parkinson's Disease, sundowning
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 ()
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, firstname.lastname@example.org
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.
03 Nov 2015
in care giving, Dementia, family issues
Tags: Alzheimer's disease, caregiver, Caregiver Support, family stories, Lewy Body Dementia, Parkinson's Disease, Senior Health
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.
26 Aug 2015
in Alzheimer's, care giving, caregiver, Caregiving, Dementia, Dementia, family issues, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia, women's issues
Tags: Caregifted, Dr. Phil Challenge, Heather McHugh, respite care
Heather McHugh creates beauty beyond words.
In 2009, Seattle poet Heather McHugh was awarded a MacArthur Foundation fellowship that came with a $500,000 prize. She had no idea what to do with the prize money:
“Nobody deserves that kind of money, and I think something in me was chastened by being awarded such a big amount of money,” she said.Then, her godson and his wife had a baby with severe disabilities, and McHugh says she kept thinking about how stressful that would be for them raising a daughter who would never walk, talk or be able to feed herself.
“It was obvious to me when that baby was born that in 10 years, they were going to need a break,” she said.
And with the realization that people who are full-time caregivers truly need a break (up to 70% suffer from depression caused by their round-the-clock duties), she created Caregifted:
CAREGIFTED grants respite to long-term family caregivers, and works to greaten public recognition of their gifts to society, as well as of their historically unprecedented numbers.Full-time caregivers of the most severely disabled have sacrificed their own leisure, resources and ambitions to serve those unable to serve themselves. Such acts of love go largely unnoticed because these caregivers are generally confined to their homes, mired in unpaid labors.
CAREGIFTED offers weeks away in inspiring locations—scenic vacation spots where caregivers can refresh their perspectives and record their views in words and images, returning home better rested and represented.
A wonderful idea and big heart are all it took to get the idea off the ground. Recipients say it’s the little things during their getaways that mean the most. From caregiver Trisha Elson, a single mom who takes care of two disabled sons:
She did some whale watching and kayaking, had a massage and made herself a smoothie every morning to enjoy on her deck overlooking the harbor. In the evening, she watched the Food Network to her heart’s content.“It was the first time in many, many years that I only had to worry about myself,” she said. “I didn’t have to worry about getting anybody their meds, if anybody was going to tantrum and set anybody off. It was just unbelievable.
Dear Followers of The Imperfect Caregiver: I was amazed to learn of this generous gift for caregivers and of course I had to share it with you. I hope one or more of you can benefit from this gift that is nothing short of a miracle. Please let me know if you are able to finally get the rest you deserve.
Dr. Phil – This is an amazing gift for caregivers but it isn’t anywhere near enough to help all those who need it. Please use your resources and that of the Dr. Phil Foundation to help the caregivers crying out for help.
12 Aug 2015
in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, looping, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia
Tags: Alzheimer's, Bobbi Carducci, caregiver advice, Caregiver Support, Confessions of an Imperfect Caregiver, Dr. Phil, Dr. Phil Challenge, Lewy Body Dementia, Parkinson's Disease, sandwich generation, sundowning
Free to Followers of The Imperfect Caregiver
(US Residents Only)
Caregivers need all the support they can get. One way to increase awareness is to show the world how many of us there are, including caregivers, those who have been caregivers, and those who may become caregivers. Our numbers grow every day and will continue to increase until cures for Alzheimer’s, all the other forms of dementia, and traumatic brain disease are found. One way to do that is to display our support for all to see.
To receive a free Caregivers Are Heroes bracelet: Follow The Imperfect Caregiver blog and send a request in the comment section below. Include your name and complete mailing address. Address will not be published on this site. Requests may also be sent to me directly via email at email@example.com No mailing costs or hidden fees apply. This is my gift to individual caregivers. Current followers are eligible for this free gift.
Dr. Phil, we need your help! Please use your resources and that of the Dr. Phil Foundation to create a grant to help caregivers most in need receive the help and support they so desperately need.
To add your voice to mine contact Dr. Phil at www.DrPhil.com
26 Jul 2015
in Alzheimer's, care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, Dementia, family issues, home health care, Lewy Body Dementia, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, stroke, Uncategorized, understanding dementia, women's issues
Tags: Alzheimer's disease, Bobbi Carducci, Caregiver Support, Confessions of an Imperfect Caregiver, dementia, Dysphagia, family stories, paranoid schizophrenia, Parkinson's Disease, sandwich generation, sundowning
July 26, 1926 – July 26, 2009
A year ago today I celebrated with family friends the release of Confessions of an Imperfect Caregiver. The day was one of joy mixed with sadness as were so many of the days I spent writing it. We chose to release the book on Rodger’s birthday to honor him and his life. I knew when I decided to share our story I would experience again all the emotions of living it. I told Mike to be prepared for an emotional rollercoaster. He knew all too well what that meant. He lived it too and would have his own moments of joy and regret. However, we agreed it was important to speak the truth about what it’s really like to be a caregiver.
I was determined to be brutally honest. I included the good days, the days of precious moment of clarity and remembrance he chose to share with us. However, I also share the many moments of anger and doubt. I cry and pray and vent the frustration that comes with doing the best you can in an impossible situation for someone who sometimes loves you but far more often resents you for trying to save them from themselves.
Caregivers often asked, “Why doesn’t someone write a book that shows what it’s really like?” Confessions of an Imperfect Caregiver does that. Caregivers, you know what it’s like. You live it every day. It is now my wish is to get into the hands of your friends and family members in the hope that, in reading our story, they will better understand your situation and offer to help in any way they can.
Confessions of an Imperfect Caregiver is for caregivers, those who may become caregivers, those who have been caregivers and those who may one day need care. I hope our story helps everyone understand that you don’t have to get it right every time in order to succeed and sometimes being a little bit crazy is exactly what is needed. Available via Amazon and Barnes&Noble. To purchase a signed copy you are invited to contact Second Chapter Books in Middleburg, VA (540-687-7016) or via email: firstname.lastname@example.org