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.

 

Get Enough Rest, Really People?

caregiver-stress

Tips on how to recognize and cope with caregiver stress appear on almost every caregiver website, blog, and column. Too bad none of the advice works.

Click on the link below to learn why.

Why Caregivers Ignore All That Good Advice About Dealing with Stress and What You Can REALLY do to help.

 

 

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.

 

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.

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?

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.

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