A Fearsome Intimacy

Caregiving Fearsome Intimacy

When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

 

What We Have is a Failure to Communicate

failure-to-communicate

You spend hours, days, weeks, months, years, becoming more and more isolated as caregiving takes over your life. Well intentioned friends and family who offered to help in the beginning drop out of your life as they tend to their own families and jobs.  When they do come to visit they see Mom or Dad on their best behavior. Somehow he or she is able to connect with reality long enough to convince visitors they are so much better than they really are.  They may even accuse you of abusing them or robbing them causing distrust and confusion within the family.

If only your visitors could see your parent beg to go home for hours or cower in fear because they no longer know who you are.

Fortunately there are now ways to make that happen and I encourage you to use them especially if your family members are too far away to visit often. They may not be able to come in and relieve you but they might be able to help in other ways once they see how much you are doing every day.

Don’t let distance keep family in the dark. The more they know the better chance you have that someone will step up to help.

Communication is key, no matter how you make it happen. Use any and all resources available to you including one or more of the ones listed below.

I urge you to take full advantage of video chatting to share your experiences and make it far more difficult for others to say, “I wish I had known how hard it was. I would have been there for you.”

Listed below are a number of resources to keep communication open.

Nucleus

Skype,

FaceTime,

Glide,

Tango, etc.

Email

Phone

Facebook

If you are using, or have used, any of the resources listed above to reach out to family and friends please share your thoughts on how well it works or worked for you. I look forward to hearing from you.

 

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.

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?”

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

Giveaway for Caregivers

Caregiver Bracelet

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 bcarducci@comcast.net  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

 

 

 

Caregivers Are Beautiful

beautiful woman

Caregivers are unique in every way. It is the caring we do that brings us together and links us in a way that cannot be broken. Know that the Imperfect Caregiver understands how special you are, even when you believe you are failing. Blessed be.

Dr. Phil, Help the Caregivers who need it most. http://www.drphil.com

Previous Older Entries