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.

 

Giveaway for Caregivers

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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 Address will not be published on this site.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

 

 

 

Holding Tight When They Are At Their Worst

when at your worst

Caregivers, you are home to the ones in your care. The place where they are loved regardless of their behavior.  For most of them you are the only one keeping them safe from themselves. You are the gatekeeper fighting valiantly against the bitter, ugly diseases that attack them every day.

Being a warrior against a foe so powerful is brutal in its demands. You probably didn’t know how hard it would be when you took in the role. Now it’s draining you. Keeping you awake at night. Taking a toll on your health because you can’t leave the house to see your own doctor. Yet you continue for it is your arms holding them tight. You are their home.

Blessed be.

I invite you to share some of the worst things you have to cope with as a caregiver. Perhaps your story will help someone else get through the day. If you prefer to be anonymous you may contact me directly via email bcarducci@comcast.net  and I will post your comment for you.

It may even help to get Dr. Phil’s attention and get him to respond to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to provide grant money to assist caregivers most in need of help.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

The Agony of Relief

For seven years I was his constant companion. The one he railed against and accused of trying to poison him. The one he insisted was his best friend on the good days when he was lucid.

“Without her I’d be a gonner,” he would say.

In the beginning I was his chauffer taking him to his many doctor appointments. At first we took the 40 minute drive over the mountain to the VA hospital every three months.  As his various ailments, including dementia and Parkinson’s disease, progressed the appointments came more often.  Dysphagia came next. He could no longer swallow properly. His diet was limited to pureed food and thickened liquids. He had trouble swallowing his saliva. Aspiration pneumonia resulted in several long hospital stays weakening him further and requiring doctor visits once a month.  Then he had a heart attack and a pacemaker was inserted. Blood clots developed in his arm as a result. Frequent blood tests to monitor his clotting ability meant more trips to the hospital. Eventually we were going every week.

He continued to fail and eventually he entered home hospice care and we no longer made the drive.

He was hearing voices again and becoming more delusional as the dementia progressed and the medication he had been taking since his early twenties for schizophrenia began to lose effect.  Still, we prayed for a miracle comeback. He’d done it before. We’d think we were losing him, prepare for the worst and just when we began to lose hope he would gather the inner resources and strength that had defined him all of his life.

He’d gone from farm boy to defiant resister of the Gestapo who had taken over his country. He moved to America as young man to start a new life. He enlisted in the Army to serve his new homeland. It was while in the service he had his first psychotic break.

This brilliant man who spoke seven languages and held advanced degrees in literature and mathematics would never be the same. Electric shock treatments, ice baths, experimental treatments and increasingly strong antipsychotic drugs robbed him of memory and kept him sedated at all times. After thirteen years he was released. He married and raised two sons. He was a hero in so many ways.

As he began to fail I did too. Sleepless nights, constant stress, the guilt that came with knowing I couldn’t save him took its toll. The two of us were barely functioning.

I fed him. Changed his soiled Depends. Wiped his bottom. Bathed him. Dressed him. Sat up all night listening to him breathe.  The night he died Mike and I sat with him, holding his hand, doing everything we could to keep him comfortable.

In the early hours of his 83rd birthday he took his last breath.  This amazing man who had challenged me in so many ways and taught me so much about what real strength of character looks like was gone.

It took a while for the tears to come.

“What’s wrong with me?” I asked my husband.

And then it started. A slow trickle at first, followed by the first stabs of grief. I cried so long I wondered if it would ever stop. When it finally did, I wiped my eyes, blew my nose and started over again and again and again. It was only after I had exhausted my tears and my body that I could face the awful truth. It was not only grief that brought me to my knees. It was the agony of relief. His suffering was over and that meant I was finally free.

Intellectually I know my feelings were normal under the circumstances but there is still a little voice inside that continues to ask, What’s wrong with me?”

I continue to ask for your support and comments in response to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to offer real help to caregivers most in need.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/  http://www.drphil.com/   @DrPhil

https://www.facebook.com/drphilshow?fref=ts

When I Told You I Was Normal …

normal exaggerated

I love this thought. For people with Alzheimer’s and other forms of dementia their perception is reality. Their normal is different from ours. One moment Rodger would be living with his son and his pesky daughter-in-law who insisted he use his walker and made him eat pureed food when what he really wanted was pita bread and a big juicy orange. “Pita bread is delicious you know.”  The next minute he had gone back in time. He was young and strong living on a farm in Italy. He had no idea who I was or how I got in his house.

Sometimes he’d look up from the TV he watched hour after hour looking lost and confused. I always wondered where he was and what he was seeing when that occurred.

He liked to watch reruns of old television shows. Bonanza was one of his favorites. He said it reminded him of Italy. When Mike asked him why, he looked puzzled for a moment before replying, “The way they cook all the time.” I believe he was thinking of his mother and how she would make polenta before going to church each morning then coming home to prepare meals for the rest of the day.

He liked to look at the Blueridge Mountains from the deck or out the family room windows. “Those are hills,” he insisted. “In Italy we have mountains.”

The days when the voices came were hard for both of us. “They make me confused and suspicious,” he told me. He would never tell anyone what they said to him.  “Nothing good,” his doctors told me.  When I began to recognize the signs that he was hearing them I’d know “the others” were among us. I have to admit they me suspicious too.

All this was part of his normal. It became a new normal for me as well. Normal was never knowing what would happen on any given day. Normal was accepting that things were not as they appeared to be most of the time.  Saying that either one of us was normal was often more than a slight exaggeration.

Dr. Phil, caregivers need help.  Here are more comments from those who hope you will accept the Dr. Phil Challenge and use your influence and the Dr. Phil Foundation to provide grant funds to help caregivers.

Vicki Kleutghen – Comment: As caregiver to my husband of 38 years while he battles primary Plamsa Cell Leukemia ( an extremely rare – 100 US cases per year- and very very rare variant of Myeloma), I don’t want to hear the mantra “eat right, exercise, take time for yourself.” it’s meaningless unless someone else is there to provide support for the caregiver.

Take the advice one at a time:

Eat right.  Would love to, but when spending hours/days/weeks  sitting in waiting rooms, clinics, hospitals, you’re limited to what the vending machines offer. You can’t run out and get something healthier as who knows when your patient will be examined or called in for mess, etc. we all know how timely physician appointments run. At home, You’re often cooking anything and everything that might appeal to your patient. As my husband is receiving chemo, tastes change daily. As caregiver, I’m more concerned with making sure he gets enough nutrition and calories. As he is immune suppressed, fresh fruits and vegetables are off the table unless they carefully, individually washed in a bleach/vinegar solution. So if the smell of baked chicken and green beans makes him sick, it’s on to something else, often ending with protein shakes, soups or whatever else palatable. After trying all that, my meal often ended up as a dish of ice cream! Let alone shopping for food. my husband could not be left alone as a result of orthostatic hypertension so grocery trips consisted of him sitting in the car while I ran in and grabbed whatever was handy.

Exercise – see above! orthostatic hypertension means he would pass out suddenly. After he had two stem cell transplants (yes 2! within 2 1/2 months) he could not be left alone as he could spike a temperature suddenly. Exercise inside would have to squeezed in between routine care giving, routine household chores and, if there was anytime left, dealing with the piles of medical bills, insurance papers, etc.

Take time for yourself – hahaha! The stress and worry of caregiving, finances, etc makes it extremely hard to concentrate on anything other than your loved one. I read several books when I couldn’t fall asleep after a night in the ER , or  a rough day of chemo side effects but today I can’t tell you a thing about them. I did knit while sitting in the back breaking chairs for caregivers – but couldn’t follow a pattern. I ended up with dozens of dishcloths, straight scarves… Totally boring items. Clinics often suggest caregivers run out while their patient is there – but the length of clinic visits vary… Some days 30 minutes, some days 8-10 hours with the possibility of leaving every hour or until the next set of labs come back.

The stress of caregiving takes a serious, unseen toll. Everyone’s concern (including the caregiver’s) is for the patient. As a caregiver, I couldn’t forgive myself if something happened to my husband while I wasn’t there. No one knows what might happen when. What if he went into convulsions while I was getting my haircut? (Which I didn’t do for over 6 months)  what if we accepted one of the many meals offered by friends and neighbors and they hadn’t washed or cooked everything thoroughly and he came down with one of the many food born bacterium that can kill an immunosuppressed person?

Relying on friends and family is often suggested. Unfortunately we live over 1000 miles from any family – which in discussions with other caregivers is more the norm these days. My husband’s treatment required us to move 200 miles from home to a strange city where we knew no one. so much for the help of friends. As for emotional support, I found the most helpful to be other caregivers, in person or over the Internet, who truly understood what you were going through.

Dr. Phil, the platitudes of what a caregiver “should” do for themselves  would be much more effective if practical, common sense solutions could be devised.  Finances are often stretched beyond breaking with the costs of medical care, so indulgences like having food delivered or hiring home health aids are out of reach. Counseling is also a luxury that caregivers forgo in order to be sure that their loved one has everything that THEY need.

A program of Caregiver Assistance Grants would make an incredible difference in the lives of families struggling with the demands of caregivers.  Please don’t make the blithe suggestions again that you did in your show. They are meaningless to anyone actively involved in caregiving and only serve to salve the guilt of others.

Kristina Hopkins  – Comment: as a full time caregiver to my disabled husband, Mom to 2 daughters and help with my father in law, who lives with us, I appreciate advice from people, but please tell me when in my day am I suppose to take time for myself? It’s easy for people to give advice when they do not spend a day in my shoes or the shoes of wives like me.

Amy ganos  – Comment: I would like to see this happen. Caregiving is very time consuming

Chris MacGregor – Comment: I am. 62-yo woman caring for my blind, hard of hearing & now in the end stages of dementia with Alzheimer’s. I’ve been living with her for almost 10 years now, and am sole FT caregiver with limited support from my siblings who mostly live out of state. As the disease has progressed, my mom has become severely anxious, afraid, and depressed. For the last year or so she is terrified to be alone. I can’t leave the house without her, and there are few people she trusts to stay with her. I have little time for myself, and often get an argument from my siblings when I try to take a couple of weeks twice a year. I’d love to take better care of myself, but my mom ALWAYS comes first. What solutions do you have for those of us in my position? I had breast cancer and radiation last summer, suffer from depression & anxiety (for many years), and have lived on Social Security Disability for way too many years.mwhere is the money & support supposed to come from to take care of myself first?

Lucinda Rieschick – Comment: Please get help to us caregivers. Not just u should do this and that. We need help. Not just we but me too.

Joan Holt – Comment: I also challenge Dr. Phil to offer his resources to help caregivers everywhere!  This is so important especially if you’re your family members only support. Then it’s crucial that that person gets some ‘down’ time because if not, then if something happens to that person who will step up to do it?

To Contact Dr. Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/   http://www.drphil.com/ @DrPhil

https://www.facebook.com/drphilshow?fref=ts

Good Morning Caregivers – For Your Inner Peace

 

inner peace

But if it does, if someone is driving you crazy with advice on how to do this and telling you things you already know and have heard so often you want to scream. If a family member is more concerned about where the money for care is going than how much you are giving up to be there for the one who needs you. If your loved one is failing fast and your heart is broken, know that I understand and I am here for you.

Sometimes there is no peace for us. Only the next moment and worry about what it will bring. For those minutes, hours, days, years, I send you my prayers every night.

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Good Morning Caregivers – Just for Today

Maxine - Throw in the towel

Caregivers, just for today leave the towel where it landed. I know you are doing everything you can to maintain your home, your family, the person in your care. You do much more for others than you do for yourself. Just for today let go of every little thing that doesn’t have to be done right now.

Maybe you were taught to make your bed every day. Just for today leave it unmade. 
Instead of cooking dinner order a pizza.

Let the dust settle on the coffee table. It will be there tomorrow.
Stay in your pajamas.
Let someone else take out the trash.

Consider the things you do automatically because you have always done them … pick at least one … and just for today let it go. Use those few moments to have a cup of coffee with Maxine and absorb a bit of her attitude. Do it just for today. Do it for you.

 

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A Hug For You and Your Loved Ones

 

hug 3

This is the final day of National Blog Post Month and I met my goal of posting a blog a day. It’s been difficult at times to find something meaningful to share with you. Not that I don’t have anything to say, there is so much more to our story I am confident I can write about caregiving for many years to come. The sometimes difficult part is to be inspired on any given day to the degree that will honor all that you do.

This weekend two of my youngest granddaughters were here over night. They ran me ragged and I loved every minute of it. They just left with their Mom. I knew it would be exhausting but I want to spend as much time with them as possible while they are little and I am still able to hold them on my lap and tell them stories. One of the things I treasure most about these visits  is the hugs. Tiny arms wrapped around me always bring me a sense of peace and an outpouring of love.  It doesn’ matter how young or old we are, a hug is one of the greatest gifts we have to offer.

Hug your loved one today. You will both be enriched by it.

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Keeping It Together

focus on what holds you togetherAt the end of the day I spent so much time going over what  I might have done better and trying to figure out how to fix an unfixable problem I lost sight of the truth. Together we were doing our best and that was all anyone could ask of us. 
 
Caregiver, be kind to yourself you are doing something wonderful every day.
 
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NaBloPoMo November 2014

Please Make It Stop

melting clock “What time is it?”

“11:00 in the morning.”

Thirty seconds later – “What time is it?”

Thinking he didn’t hear me I told him again. “11:00 in the morning.”

Thirty seconds later – “What time is it?”

I sighed and turned down the sound on the TV and repeated the time once more.

Thirty seconds later – “What time is it.”

Then I knew. He’s mind was stuck in a loop. Before I understood what was happening I would get frustrated and angry with him. He would go on like that for hours. Why the hell did he do it? Didn’t he know it was annoying as hell? I was convinced he did it on purpose in order to get attention or to get back at me for controlling him as he often accused me of doing.

Then I learned more about dementia and how the brain works. He wasn’t doing it on purpose. He could no more stop repeating himself than a scratched old record album could stop from skipping when the needle reached a flawed groove. (If you’re too young to understand that reference, ask a baby boomer, he or she will explain it to you.)

Once I understood what was happening I was able to figure out what to do. I had to move his thoughts past the flaw in the groove so they could move on to the next section.

“What time is it?”

“It’s almost time for lunch. Are you hungry?”

“No. What time is it?”

“It’s time to wash your face. Here is a warm cloth.”

The distraction helped for few minutes and then he asked again, “What time is it?”

“It’s time to fold these towels. Will you help me?”

“Yes. I have to do something sometime. It’s not good to sit and loaf all day.”

A few minutes pass in blessed silence as he folds the towels and I take them an unfold them to keep him occupied.

And then it happened. He looked up from his work and said, “My mother, she washed clothes on Monday. Monday was wash day.”

As he folded all the towels one more time he began to relate another memory of his youth. The needle had moved on and the result was truly music to my ears.

Note: It may take a few moments and some creative answers to move your loved one out of the loop but if you keep trying it will work and cut the time you both have to deal with to minutes instead of hours.

Does your loved one get stuck in a loop asking the same question or saying the same thing over and over? How do you handle it? I’d love to hear from you. Post your response in the comment block below.

 

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NaBloPoMo November 2014