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

The Face of a Caregiver

I usually avoid cameras. I prefer the illusion that I look better than whatever shows up after the click or whirr that indicates my image has been recorded digitally or on film. Today I am shedding my vanity to show you what the face of a caregiver came to look like.

caregiving pic Bobbi

Bobbi in 2005 – three years as a caregiver. Four more to go.

When my father-in-law came to live with us I had a full time job. I went to the gym every day. I slept well and I ate right. All the things a caregiver is advised to do. Little by little it all fell away.

First the job went. My boss was understanding. I was even offered the chance to work from home most of the time and go into the office only as needed. We tried it for a while. It didn’t work. I was failing there and at home unable to give either the attention they needed.

Next to go was working out at the gym.  A half hour drive there and back plus an hour workout was too much time away. It wasn’t safe long before he needed constant supervision. He’d forget things on the stove and, for some reason, he liked to dry wet tissues on the light bulb of the lamp in his room. The risk of a fire scared me so much I bought a baby monitor to keep an eye on him.

Eating right was next to go. My diet became much like that of an exhausted mother of a newborn or a temperamental toddler. Feed him and grab what you can. The remains of sandwich here, a few chips there. Every now and then a yogurt cup to convince myself nutrition hadn’t fallen by the wayside entirely.

Getting enough rest became a hope for the future. A future I didn’t dare admit I thought about for it meant he would be gone and to wish for this dreadful disease to be over was wrong, wasn’t it?

For seven years I did the best I could. He did the same. It took a huge toll on me. It took his life away. I miss him. I would do it again if needed.

It’s important that people understand how hard it is. Perhaps by sharing what the face of a caregiver becomes someone, maybe even Dr. Phil, will get it. Caregivers need help. Caregivers need you.

Bobbi now

Bobbi on July 26, 2014 as we honored him on his birthday and shared his story with the public for the first time.   I look years younger and feel it as well. I hope he was smiling along with me.

More voices urging Dr. Phil to help caregivers.

Diane Waterman – Comment: I didn’t see Doctor Phil’s show, but I can tell you from experience, being a caretaker to someone sick or elderly could never pay enough for what these people do. I cared for my sister with help from my children, for the last months of her life. She had Lung Cancer! I have Fibromyalgia myself and was dealing with daily pain. I did everything I could to take care of myself, if it wasn’t for my own adult children, I would not have survived. They gave me breaks night time. The whole year was cruel in many ways, I had to deal with a very dysfunctional family as well! I was relieved when she finally passed on July 10th 2013, not only for her , but for myself!!  RIP Mona, I love you and miss you! Xoxo

Pamela Lynne Kemp  – Comment: Thank you to everyone for sharing your story.  You speak for so many of us.

Beth Anderson – Comment: I am full-time caregiver for my Mom who turns 85 in a couple of weeks. My mom has Alzheimer’s and Dementia as well as numerous other ailments. I have been Mom’s full-time caregiver since 2006 and after a recent fall, I am with Mom 24/7. I split my time at her home and bring her home with me for what she calls ” a mini vacation.” I am not a saint or looking for recognition, I just realize that it take a special person to take on the role of caregiver. I make most of her meals, take her to all of her appointments, set up her medications, bathe her, clean her after messy bathroom visits, take her for walks, take her to the nature center, the pumpkin patch, graduation parties, weddings and if my husband and I take a vacation, Mom goes along. I get occasional breaks, thanks to two of my sisters, but their work schedules are a usually a conflict. My husband has been so supportive through this chapter in Mom’s life as difficult and exhausting it may be. People do not know my story, as I do not know other people’s stories. With that being said, be kind to everyone. Offer assistance whenever you can. Smile, even though you don’t feel you have much to smile about, it could make all the difference in the world. Stay positive! Thank you to all caregivers, I am walking in your shoes! Love you Mom!

Sherri D – Comment: I’ve been caring for my severely disabled son for almost 15 years, with many more to go. Some say it’s my duty as his mother and they may be right, but it’s BC I LOVE HIM I have up my life for him. I’m coming out of a second marriage 😦  I don’t go anywhere with friends or much else. I used to be a dance teacher and dancing was my life. Now I’m a stay at home mom… Lonely and tired. With no relief in sight.

Linnea Hedborn – Comment: I am primary caregiver to my 95 year old mother. Every single day is a battle to be heard by her doctors and my family. I can’t let down for one second…not one. I have to keep so many different balls spinning in the air, no matter what my own financial situation (dire) or mental and physical health is. The latter is going fast. To be told to “take care of myself” is patronizing and unhelpful.

Stacey Belt – Comment: I have quit jobs to care for three family members who have now died.  I now need help and find myself unemployed, homeless and about to fight melanoma for the second time.  Guess what? I have no one to care for me, no one, zip, zilch, zero!  I gave up everything three times to care for family and now the best thing that can happen is I die quickly since I am homeless, jobless, penniless and have no support!! That’s the thanks I get! But hey, God has a special place in heaven for me or so I’m told! What a great thing to look forward to right?!

To contact Dr. Phil directly and ask him to accept my challenge to offer real help to caregivers go to the following links.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

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

I Prefer to Take Life One Panic Attack at a Time

panic attackPanic attacks, migraine headaches, clumps of my hair clogging the shower drain. These are all things I experienced as a caregiver.  Stress was sapping my mental and physical reserves as his conditions worsened. I needed help.  People said, “Take care of yourself. Eat right. Exercise. Get enough rest.”

Sure, I thought.  I’ll get right on that.

Are you kidding me?  If I were to be true to my instincts right now this page would be filled with some very strong, unbecoming language describing how useless advice is when it isn’t followed up with the resources to make a difference.

I’ve issued a challenge to Dr. Phil but it is also for family and friends of caregivers everywhere. The people caring for others now will be the ones needing care next. How dire their health issues will be are being greatly influenced by the degree of stress they are experiencing during the weeks, months, and years they are giving so much of themselves. You can make a difference.

If you can give much help, give much. If you can give only a little, give a little. A warm meal, short nap, a visit now and then will be appreciated more than you know. A full night’s rest is a blessing. Time to go to the grocery store and take in the aroma of fresh fruit could be like a vacation for someone who hadn’t been able to do it in months.

Please help!

More Comments for Dr. Phil in response to the Dr. Phil challenge:

Ann  – Comment: I agree. I am a cancer patient and my energy level is very low.

My husband is the caregiver for me and his mom who has dementia. I would love to see some real programs that would help caregivers cope. My husband is a loving caring person but I know at times it seems very overbearing to him.

Tammie Marett – Comment: I take care of my bedridden husband. He has no other family and we live over. 8 hours from mine who couldn’t help much anyway.  I would love to take your advice bit its all the same mumbo jumbo. There is no money for caregivers. My husband is a vet.  They offer me 2 respite days a month of only 6 hours each time.  You offered no solutions just the same tired advice.  This problem is going to get larger as the baby boomer generation ages.

Kristi Simmons – Comment: I am living the Oreo life. My husband and I are caregivers for my mother for the last 5 years.  I also have a 21 year old a 10 year old and a 6 year old.  My husband and I both work 40 hours a week. I have 3 siblings. My oldest brother takes care of my mom’s finances, which creates its own tension sometimes.  My other two siblings do nothing to help and often feel like it’s our responsibility to care for mom since we live with her rent free.  They don’t understand the mental and physical drain this can be.  We’re lucky, my mom is good natured and fairly easy to care for the majority of the time, but it’s hard to be caregiver, mother, teacher and wife 24/7 365.   We’ve been lucky enough to have friends that mom is comfortable enough with to stay with her so we caN take short trips with our kids occasionally.  Unless you’ve done this you have no clue how exhausting it is

Kathleen Tingler – Comment: I agree with your take on offering advice and not an alternative.  I am a full time care taker and have no one that wants to step up and help me find a way to catch a break even for an hour or so a week.

Rhonda Partin-Sharp – Comment: Oh, I agree with this article – gives us caregivers a way to take care of ourselves – when you are going on two hours of sleep a night because that is the ONLY way to get just the priorities done because you are taking care of two elderly parents – don’t tell me to get sufficient sleep.  That’s insane.  We need to stop telling the caregivers what to do better and need to start telling the lazy family members (every caregiver support group will tell you that it usually ends up being one person doing it all with not only no help from the family but judgment and pressure from the family) what they need to to do help.

Shannon Watstler – Comment: Yes please, caregivers do not always need unsolicited advise, just real quality help ! Many friends & family abandoned, compare their normal every day situations & give excuses “why they can’t help” or “they just want to know how the patient is & then have to go”. It’s a exhausting & never ending job, non-paying & sometimes you truly feel hopeless. If I ever have to go thru this again, I will def do things a little different & ask for more help. many people don’t handle situations of thinking about their own mortality-that’s sad ! How would they like to be in the same situation & hear excuses of why someone can’t help or just abandonment. It’s a lonely journey that no one understands except those that go thru it & are forced to deal with it head on every day even when they’d enjoy a few minutes of time for themselves.

Dawn D. Ames – Comment: This comment was right on.  My husband needs 24/7 care.  Getting out to get my owe scripts and groceries is extremely  difficult.  My children and a few friends try to help, but with his needs, the it is not always possible.  It has been three years.  It would be nice to have a couple of hours for church or to go out with friends in those times when I feel safe enough to leave him. Thanks Bobbi.

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

I Didn’t Know I’d Become Infected By His Illness Too

lost touch with people I used to be

Before Rodger came to live with us I thought I knew who I was. Up until that time I had a great track record of weathering life’s challenges. When faced with hardship I did what I had to do to solve the problem or adapt to the changes.  I cried and prayed often but never did I feel as if I’d lost myself.

I didn’t know I’d become infected by his illness too.

When he wandered I followed in his footsteps.  When he lashed out at me I lost my temper and shouted back only to be overwhelmed with guilt once the storm had passed. When he refused to bathe for days I’d find myself staring at my disheveled reflection in the mirror. Exhausted from lack of sleep and afraid of what he might do if I left him alone long enough to take a shower I looked, and probably smelled, as bad as he did.  Time after time we were admitted to the hospital together. Him to a bed me to an uncomfortable chair beside him. We spent days and weeks together in that place.

As he continued to fail it felt as if pieces of me were falling away too. I had to face the truth. We would lose this battle.

When Rodger died he took the person I used to be with him and left behind a part of himself and this changed and hopefully smarter me. The one writes our story. The one who would do it again for a family member if needed. The one who would not expect more from either of us than we are capable of giving.

Blessed be the caregivers, both who you are now and who you are becoming.

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Show Me the Path …

Holy Spirit Welcome

When I am lost and uncertain what to do next I go quiet and pray.

“Show me the path you want me to take.”

I’ll be the first to admit the road is often bumpy and much longer than I had hoped but,

I always end up exactly where I need to be.

Caregivers, I know how hard this is and even this, my favorite prayer, will not change that. However,  I have learned that sometimes a prayer often repeated results in help arriving in the most opportune time from some very surprising sources.  Try it. It can’t hurt and it may help.

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Trust Yourself

When caring takes courage

Trust Yourself

How could I do that when no matter what I did he continued to worsen?

Things accomplished one day were no longer possible the next. Memories came and went within moments. Laughter turned to tears and acceptance to anger so quickly it was impossible to know why.

Who am I describing in that passage? Him or me?

It could be either.  In truth, it’s both.

I came to finally trust myself because I finally realized I was the best person to do this, flawed as I was.  I made it up as I went along and so do you. That’s how this is done when you are juggling the love and the loss. “All at once, all the time.”

 

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Good Morning Caregivers – Sometimes I Question My Sanity

 I hope this little bit of levity brings a smile your way.

I question my sanity

how do you feel today

I am thinking of you today.

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Good Morning Caregivers – Get Off My Mountain

Many paths to success

Just as there are many paths up the mountain there are the many paths of caregiving.  How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?

Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.

Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.

 The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”

Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”

GET THE HELL OFF THE MOUNTAIN

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Good Morning Caregivers – I May Not Be Perfect

I may not be perfect

If I am able to help you understand anything by way of this blog or my book I hope it is this:

I AM NOT PERFECT AND THAT’S OKAY

We are human.  We become angry sometimes. We feel resentful when others go off on vacation or simply out to dinner and we can’t. We get sick and tired of hearing the same question over and over. We need sleep and get cranky when we don’t get enough. Our heart breaks when the one we are trying so hard to help accuses us of mistreating them or stealing from them. Or worse yet, don’t remember who we are.

Some days we want to give in, give up, and let go so badly we nearly fall apart. And then we feel terrible. We doubt ourselves and become convinced we are bad people.

We are not. We are the caregivers. We are not perfect. We are human. We give all we have and then give some more. Y

You, like me, are not perfect but no one is.  You are a caregiver and because of you the one in your care will have many more good days than he or should would have had otherwise.

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Where Have My Friends Gone?

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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NaBloPoMo November 2014

 

 

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