Announcing the Imperfect Caregiver Facebook Page

The Imperfect Caregiver is pleased to announce the launch of the new Imperfect Caregiver Facebook Page. I hope you will become a Facebook friend and encourage family members to like the page as well.  Check it out at https://www.facebook.com/theimperfectcaregiver/

A sample of the important information you will find there is an announcement from Seniorlink Inc. about its “Thank You Caregiver Nation” contest  which celebrates the vital role of family caregivers who provide comfort to those in need of care.

The contest, which will feature one winner for each month of 2017, will reward caregivers with a credit to PeachDish, a meal delivery company, to reduce the stress of planning meals for the whole family. Those wishing to nominate a caregiver can register at www.tycaregivers.com from now until December 31, 2016. Winners will be chosen at random and notified by email.

 

 

Thanksgiving with Dysphagia (Difficulty Swallowing)

Thanksgiving is the holiday most focused on gathering around the table with family and friends to share a sumptuous feast. My father-in-law, Rodger, was never one to miss a meal. He ate breakfast, lunch, and supper at precisely the same time every day. He grew up on a farm in Italy. Like most Italians he had a very healthy appetite.

When advancing Parkinson’s disease and dementia triggered severe swallowing problems I knew I had to be creative. Everything he ate had to be pureed and any liquids had to be thickened to the consistency of honey. I bought a food processor and experimented with ways prepare tasty versions of the things he loved to eat. I showed him that the mushy stuff he insisted wasn’t food was the same thing he used to eat. I had him watch me mash the potatoes, prepare the vegetables, and put them in the food processor.

“This is real food,” he finally admitted. “But it’s not as good. I need the real, real food.”

I wanted to serve him roast chicken, a baked potato and fresh green beans with a slice of apple pie with ice cream for dessert. He should have been able to eat anything he wanted. But the danger was too great.

I made a lot of thick soups and stews full of vegetables and beans. Flavor and nutrition were my main focus and when the peas turned the pureed chicken stew green I told him it was one of my Irish specialties. He ate it all.

When Thanksgiving came and the house filled with wonderful of aroma of roasting turkey and baking pies I made sure he was able to enjoy as many of his favorite dishes as possible.

Here is my recipe for A Dysphagia Thanksgiving:

Turkey – I tried pureeing both dark and white meat turkey and found it too grainy so I used a well-known brand of junior baby food and pureed it further to remove all lumps.

1 cup homemade stuffing – Place in food processor with 2 tablespoons of homemade gravy. Puree until smooth, making sure all lumps are removed. (Add gravy one teaspoon at time as needed.)

½ cup mashed potatoes – mash or puree to remove all lumps. Add gravy to the potatoes for flavor.

½ cup creamed spinach – puree until very smooth

For desert – remove crust from one slice of pumpkin pie, top with whipped cream.

At the end of the meal he said, “This is just like my wife used to make.” I knew it wasn’t true but as long as he enjoyed it there was reason to be truly thankful.

An estimated 15 million people in the United States have the current diagnosis of     Dysphagia. Patients with Dysphagia are at high risk for aspiration pneumonia which weakens them and can lead to death.  Nearly 60,000 people die each year from complications associated with swallowing disorders.  For more information on Dysphagia go to: http://dysphagia514.tripod.com/vitalstimtherapy/id1.html

National Family Caregivers Month – Tell Them You Need Help

Spread the word. Let everyone you know how many of us there are and how much we need their help. Don’t be shy. When someone says, “Let me know if you need anything.” Give them something to do.

Here are some suggestions:

Visit once or twice a month for thirty minutes so I can shower and rest for a few minutes.

Call when you are going to the grocery store and ask if we need anything.

Cut the grass or rake the leaves in my yard.

Once a month provide a meal so I don’t nave to cook.

Take my car to be inspected or pick up prescriptions at the pharmacy.

Be my friend when I need to vent and please don’t judge me when I am at my most vulnerable. This is harder than I ever imagined and I am doing the best I can.

What would you add  to the list above? What will you say when well meaning people say, “Let me know if you need anything?”

Please Don’t Do This

I read a recent post on another social media site from a woman who said her mother was repeatedly asking why her parents never came to see her. The woman in care is elderly and her parents have been gone for many years. The advice she received from a paid caregiver made me cringe and shout out NO!!!!!!! despite the fact that I was alone in my home and no one would hear me.

I am writing today to let my voice be heard loud and clear. Don’t Do It! 

So, here’s what the caregiver told her to do.

“Take your mother to cemetery to see their graves.”

Please DO NOT DO IT.  Imagine you have dementia and in your mind you are somewhere back in time, longing to see your parents, and someone puts you in a car and takes you to a cemetery to show you their headstones. Imagine the shock and pain you would feel. The grief would be as overwhelming as it was the day they passed and even if she accepts it in the moment she will forget and start asking again.

I suggest telling her something like this, “They are away right now and will visit when they can.”

What do you think of the caregivers advice and what would you say in that situation?

DROWNING

drowning

The Imperfect Caregiver is here to be a lifeline for you. I know how hard it is every day, how alone you feel, and how you wish that someone would truly understand.

You are amazing even on the days you feel as if you failed. When things change moment by moment you can’t be expected to know all the answers or to get it right every time. Sometimes anger is the only way to get through to a muddled brain. Cry when you must, laugh when you can, and know you are not alone.

 

 

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.

 

I Don’t Want to Adult Today

i-dont-want-to-adult-i-want-to-dog

dog smiling

Dog vs Caregiver? I pick dog. How about you?

Caregiver Support Group Meeting Aug. 25th

The 4th Thursday Caregiver Support Group meets on Aug. 25th, from 3:00-4:00 PM at the Carver Center in Purcellville.  No fee. Trained facilitator. All caregivers welcome.

200 E. Willie Palmer Drive, Purcellville, VA 20132

Contact Information:  Bobbi Carducci @bcarducci@Comcast.net

Take a Moment

go quiet when things are hardI know every hour of your day is focused on caring for others. This is why I encourage you to merely take a moment. Go quiet and go inside.  Take a deep breath and know you are not alone.

Mesothelioma Caregiver: You Are Bold, Strong, And Not Alone

Welcome Guest Blogger, Nicole Godfrey, writer and community outreach associate for Mesothelioma Guide.

In the words of Brett H. Lewis, “Health is by chance – Caregiving is by choice.” Caregiving is a huge responsibility, but you must remember that you are only human. You must also remember that the person that you’re caring for is still the same person. Don’t let a diagnosis change your point of view about them.

Mesothelioma Guide is dedicated to helping mesothelioma patients thrive, which includes providing information and support to their caregivers.

What to Expect

There are several factors to take into consideration when it comes to assuming the role of caregiver. As a caregiver to a mesothelioma patient, your role is going to change as the patient’s disease develops. The patient’s state of health may improve or it may decline.

Here are a few responsibilities you may have

  •  Feeding, dressing, bathing
  • Managing medication
  •   Providing transportation

Your duties as a caregiver are to assist in the day-to-day activities of the patient. You will not only monitor their health and provide them companionship, but you will find yourself being a part of a big decision making process. You will help them make decisions about their treatments, their financial and legal issues, their insurance, and their end-of-life treatment.

Don’t Forget About Yourself

As a caregiver you are going to find yourself being a huge part of someone else’s life, but you must remember that you are an important factor to making your role successful.

It is completely ok to take a timeout and to assess the new responsibilities that you are having to adapt to.

Here are a few tips to any caregiver

  • Rest
  • Take care of yourself physically
  • Accept help from others
  • Seek the aid of respite help

Read Mesothelioma Guide’s blog for more information on how to take care of yourself as a mesothelioma caretaker.

Talk About It

You are going to find yourself being a whirlwind of emotions. You are going to be scared. You are going to be angry. And that is ok. However, don’t bottle up your emotions. Talking about the circumstances can be your best dose of medicine.

You can always talk directly to the person who you are caring for. By doing this, you can address any questions you may have. Also, this allows you and the patient to express how you are both feeling. However, if the person you are caring for doesn’t want to talk, or you find it difficult to talk to them, you can always explore the option of support groups.

Support groups aren’t just for the patient. Some of these groups are designed specifically to help caregivers. Support groups help a person to stay both positive and hopeful. A person can attend a support group meeting in person, by a phone conference, or online.

It has also been proven that support groups can

  • Reduce stress
  • Provide inspiration
  • Offer comfort

You must remember that you are not alone. Support groups are designed to create a community where people can talk about their disease or it gives caregivers a chance to express their concerns about caring for someone with a disease.

Sources:

Quote: https://www.goodreads.com/author/quotes/6546527.Brett_H_Lewis

https://www.mesotheliomaguide.com/community/caregivers/

https://www.mesotheliomaguide.com/community/the-nurses-corner-9-ways-mesothelioma-caregivers-can-care-for-themselves-too/

https://www.mesotheliomaguide.com/community/support/

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