Need answers? Ask a nurse!

Need answers? Ask a nurse!

If you had a nurse who would answer any question you had, what would you ask?

Phill Tsingos

Nurse Phill Tsingos

Registered Nurse Phill Tsingos will answer your medical questions.

Asking is easy – just post them in the forums. Phill will be answering all of the questions in the forum and we’ll be creating a short video with the highlights.

Phill’s made it his goal to give all home carers the practical skills to care for someone in need, so they may live a fulfilling life.

You can learn more about Phill on Twitter or check out his podcast at iNightingale.

Meet Lisa

Meet Lisa

Tell us about yourself

I’m a 46 year old female who worked as a former secretary. I moved from Florida back to South Carolina as my parents started aging, eventually, I had to move in with them. I did have the opportunity to take an online medical transcription course and work briefly. I have a brother who lives in Orlando and is supportive and helps as he is able to.

Besides “caregiver,” what other identities do you have? (ex. Parent, gardener, manager, dog-lover)

I’m a avid antique doll collector, cross stitch, read and enjoy baking. I also have a very sweet cat who is 15 years old.

Who had the biggest impact on shaping who you are today?

My mother, aunt, and a good friend. They were and are positive influences and understanding.

Lisa and her dadWhat’s a personality trait you have that you really value?

Compassion is an admirable trait also in others as some people are not so understanding in some situations.

What’s your mantra?

Not sure, maybe be grateful for the friends and family that actually care and things in your life that make it worthwhile.

Who are you caring for? What is your caregiving story?

When our caregiving journey first began, it was pleasant and pretty cool. Started commuting from my apartment visiting both of my folks helping with bringing dinner and doing laundry, etc. One day at work, I got a phone call saying my mom needed emergency surgery and eventually ended up having to leave work permanently. Her health condition declined off and on from then on for several years. I ended up moving back in with them to help more. My dad and mom did okay for a while but he had also had heart attack, etc. So, it took both of us as she eventually ended up in a wheelchair and bedridden. We could not have done it without home health, their doctors, and staff. Even nursing facilities and hospitals were helpful for advice on taking care of both of them. It was also encouraging as was taking a medical transcription course. Think the hardest thing was when we had to get hospice for Mom and things kind of went downhill from there. Just thought she was going to be around for a little longer. As good to her as they were, it was uncomfortable but better for her to be home. I am grateful to still have my dad, although, he is aging, a little Alzheimer’s and has a walker now. For 88 years old, is not bad. Have a brother who is a long distance caregiver, but at least have some moral support. Although, it is a little stressful, I am hoping others can hang in there as there is a lot more online resources available for those in rural areas. Sometimes we can even find friends or neighbors that have the same in common.

What was your greatest caregiving lesson?

Learning to not be so selfish as our loved ones are not around forever.

What do you wish you were told before you became a caregiver?

It is a commitment that you need to make sure you are prepared to stick with for however long it takes.

What advice would you give to other caregivers?

It is emotional and there are situations that you will not prepared to deal with, but have to hang in there.

What’s your best piece of advice for life in general?

Try to make the best of it, especially if you still have your health, family, and a few friends.

What’s been the hardest part of caregiving for you?

It kind of stressful and not easy seeing parents age, kind of losing touch with and not seeing friends.

What’s the most rewarding part of caregiving?

Being able to do something that actually matters and helps other people.

What’s the first thing you do in the morning?

Take a few minutes to wake up and adjust my mood for the day.

What’s the last thing you do at night?

Unwind by taking some time to relax.

What keeps you up at night?

Stress over health concerns among other things.

What motivates you?

Nice and friendly people that actually care as you can learn from them.

What’s the best tool or strategy you’ve found to help you with caregiving?

Respect their feelings.

In ten words or less, what has caregiving taught you?

Patience, responsibility,and how to deal difficult situations with respect for the feelings of the ones you are caring for.

What’s your best habit?

Do the best you can do.

What do you do when you have 15 minutes of free time?

Read, cross-stitch, keep in touch with friends or family or watch TV.

What do you think makes a life well lived?

Try to make the best out of whatever situation life hands you.

What question do you hope an interviewer would ask?

If you had something you would change in your caregiving experience what would it be?

It would probably be not having so many health issues that are somewhat preventing me from providing better care for my dad. It just doesn’t seem fair, he deserves to receive care just as good as my mother received but at least he is nice enough not to complain.

If you had something you would change in your caregiving experience what would it be?

Maybe not having the physical challenges that developed in the process of this journey as it effects the quality of care you are able to give.

 

CGS Honors Black History Month

CGS Honors Black History Month

The fight for one minority is a fight for every minority

As we close the February chapter of 2015, we would like to take a moment to remember all of those who fought for the equality of all people in this nation. In celebration of Black History Month, we honor all of the men and women who fought, and those who continue to fight, against prejudice, discrimination, and inequality. While we observe the celebration of Black History in February, we celebrate what this month stands for every day. As we fight for the minority group of caregivers, we remember, we cherish, and we respect every other minority group that had (and still has) to fight for their equality.

Something-to-Love-Today-26

Meet Bevel

Meet Bevel

I have just turned 79 but not in mind–that’s around 39–healthy, pretty strong, maybe a little on the stubborn side, I have a pretty good sense of humor (much needed). I live in Cape Town, South Africa in a retirement village, which bugs me a bit because I can’t have anymore dogs.

Besides “caregiver,” what other identities do you have?

I do a bit of painting when I get the chance, love gardening, and an avid animal and nature lover.  Trying to get over having to put my little Maltese down in August she was very special.

Who had the biggest impact on shaping who you are today?

I really don’t think that anyone did.

What’s a personality trait you have that you really value?

I have a great deal of compassion.

What’s your mantra?

Be Positive.

Who are you caring for? What is your caregiving story?

My partner of 42 years….far too long to put down here!

What was your greatest caregiving lesson?

It becomes more and more difficult with time.

What do you wish you were told before you became a caregiver?

I don’t think it would have made any difference.

What advice would you give to other caregivers?

Make quality time for yourself.

What’s your best piece of advice for life in general?

Make sure you have a sense of humor.

What’s been the hardest part of caregiving for you?

Not being able to get away for a break.

What’s the most rewarding part of caregiving?

Knowing that I am being of help.

What’s the first thing you do in the morning?

I kiss my dog good morning, used to be two dogs.

What’s the last thing you do at night?

I say a prayer of thanks for getting thru the day.

What keeps you up at night?

A mind like an F1 race track.

What motivates you?

A lovely day rain or shine.

What’s the best tool or strategy you’ve found to help you with caregiving?

Having good music always playing (usually classical).

In ten words or less, what has caregiving taught you?

Appreciate life.

What’s your best habit?

I’m never grumpy in the mornings.

What do you do when you have 15 minutes of free time?

Sit outside in the garden under a tree.

What do you think makes a life well lived?

Thinking of others and not always about yourself.

What question do you hope an interviewer would ask?

“Would you like to have a Fairy Godmother!?”

Meet Jeanie: Caring for a son with TBI

Meet Jeanie: Caring for a son with TBI

Screen shot 2015-01-13 at 1.33.00 PMI’ve been a single parent since 1993 at which time I went back to school to get my Bachelor’s degree in Education. I taught math for about 8 years and then went into full time ministry. I founded Dove’s Fire Ministries and was bound for Africa before my son’s accident. Since his accident, I have obtained my Master’s in Health Education. I’m a lot of things besides a caregiver. I built a freelance writing business and I also teach ESL on an international level – all from home. I’m also a runner and train all year long. I have two beautiful grandchildren to which I am Gigi.

Many people have influenced my journey and helped me become who I am today. I think the most impact came from my daddy. He adopted me when he married my mom; I was 4 at the time. They had 3 children together and he never made any distinction between us – I’m his oldest child. His love, acceptance and life lessons has helped shape me into a responsible adult.

I’m stubborn. That’s what keeps me going and prevents me from giving up! I have two mantras: 1) Progress is progress no matter how small it seems and 2) Tears will get you sympathy but sweat will get you success.

I’m caring for my adult son who was injured in an automobile accident when he was 24 years old. He suffered many injuries including a TBI. He was a wonderful musician and had only one semester of college left when his friend pulled out in front of a large pickup that T-boned on my son’s side. I flew from Chicago to Louisiana and have stayed by his side continuously. We have moved back to Oklahoma where our family is located – mostly for support.

On caregiving: It’s day to day for me. I’ve battled depression and my own health issues over the last couple of years. My advice would be to take care of yourself – but not just so you can take care of your loved one—do it for yourself. We have to learn to take time for ourselves and give ourselves a break. The most difficult part of caregiving is that there is no end in sight… this is what my life looks like till I die. The most rewarding part of caregiving has been what I have learned about myself on the journey.

The first thing I do in the morning is start the coffee pot – then I bolus and change my son while it makes! The last thing I do at night is try to read a little bit before I doze off. As for strategies to cope with caregiving I’d have to say the most effective tool for me is giving myself a break. I am so stubborn I won’t stop – but I’m learning to make myself take a break every day – it’s okay to have a cup of coffee, a moment when I’m not doing anything for anybody, and it’s okay to take a nap! It’s okay to live….

Caregiving has taught me –life may not be pretty – but it goes on.

My best habit (besides coffee?) is that I am structured and disciplined. I like a routine.

We asked Jeanie a few questions: “What do you do when you have 15 minutes of free time?”

Who has 15 minutes of “free time”? lol   I might read a book, organize a drawer or catch a quick workout.

What do you think makes a life well lived?

A life well lived is one that is simply lived – walked out one step at a time with your focus on others and not yourself.

What question do you hope an interviewer would ask?

I would hope an interviewer would ask how I’ve kept the faith through this trial – and I’d reply, “I haven’t – it has kept me.”

If you are looking to connect with Jeanie or learn more about her story, she blogs at Daily Devotions for Caregivers & From the Furnace.

The mistakes of today, a fresh start tomorrow

The mistakes of today, a fresh start tomorrow

Finally laying down to sleep, we are beyond exhausted.

Today, we didn’t eat much, and when we did, it was whatever we could get our hands on fastest. We meant to spend an hour at the gym but there wasn’t enough time.

Even when that hour finally came, that window of time just for ourselves, where we had planned a variety of activities, we sat in front of the T.V. and didn’t move until we’re dragged back to reality.

As our head sinks into the pillow we fear that tomorrow will be the exact same. Negative thoughts concerning failure, fear, and anxiety creep into our head. But then we make a firm resolve: we will not wake up tomorrow with this harmful record playing in our heads. We will open our eyes to a new day and a fresh start.

We will have recognized and accepted the mistakes of yesterday; we will attempt to take better actions, to make better choices for ourselves and our loved ones; but we will remember that we are only human, that we might trip up. We will likely make mistakes. And when we do we will forgive ourselves.

We will forgive ourselves by finding the courage to make tomorrow a new day and allow for the possibilities of new outcomes.

Wise-to-accept-todays-blunders (2)

Dip and friendship

Dip and friendship

Being a caregiver makes it hard to relate. I admit I don’t get out very often, but right now everyone I met is chatting about the super bowl. How am I supposed to relate to some woman blathering about how important it is to get the dip and chips right when what I’m faced with is literally life and death. Does anyone actually care if she makes salmon dip instead of cheese dip or spinach dip? Will anyone care about her dip three years from now? The decisions I’m faced with are made by consulting surgeons, not women’s magazines.

Sometimes I don’t blame the friends who stopped calling. I stopped being interested in the drama of the woman they sit across from at work, their bad first dates, what they watch on television. If I can’t imagine living their lives, can I really blame them for not understanding mine? I still do. But I’m not angry about losing my friends so much as I’m angry at losing the life I had, the naivety that let me enjoy gossip and fret over silly things.

I miss thinking about sports and celebrities and the lives of other people. All those conversations about trivial details of other people’s lives. I can’t muster up the energy to discuss what some celebrity is wearing when I don’t even know what I’m wearing. Does it match? Is it clean? Did I shower today? I don’t worry about my old friends gossiping about me. I wish they did. I imagine they don’t say mean things because I’m an object of pity. That poor thing. Bless her heart. They feel guilty not reaching out. They pray for me. But they’re not here for me, just like I’m not here for them. We avoid each other when we see each other at the grocery store.

The author has requested to remain anonymous.

Meet Freedom Rider

Meet Freedom Rider

head shotI am a 60 year old single woman. I have one brother who lives in another country, and am the sole caregiver for, first both my parents, and now, since mom passed in 2010, my dad. I have been a caregiver for almost 7 years, beginning in 2008.

Besides “caregiver,” what other identities do you have?

Business owner, horse owner, lesbian, daughter, artist wannabe.

Who had the biggest impact on shaping who you are today?

Myself. My parents, truly, but they taught me to examine who I am and decide who I want to be.

What’s a personality trait you have that you really value?

I am emotionally strong and I persevere.

What’s your mantra?

Look up and go. This requires some explaining. For a while I was riding a very skittish horse, and I spent a lot of my saddle time on him looking at the ground (probably thinking about how hard a landing it would be). My trainer kept saying, “Look up and go,” in other words, look at where you want to go and ask the horse to go there. Quit thinking about what is under foot, just focus on the destination and getting there.

Who are you caring for? What is your caregiving story?

I am now caring for my 90 year old dad. My first couple of years I was caring for both mom and dad. Mom had Alzheimer’s, and for several years before I became a caregiver I knew that I would be doing that at some point. I spent that time arranging my business and my life so I could move to Florida to care for them. I made my business portable, I found people to take over the volunteer work I had been doing and trained them to do what I had done. I made practice “runs” back and forth from New Hampshire to Florida, first for short trips, and then increasingly longer, bringing my cat with me (both parents adore cats, and had one of their own, part of this practice was to introduce the cats). Then, dad ended up with some small problem in the hospital, and mom couldn’t function without him, and I made the trip almost non-stop, and stayed. He was fine, but I just stayed on to help. After she passed away, I realized that he needed my help. Dad had polio as a child, and was less and less steady on his feet, along with other issues. He still has all of his mental acuity.

What was your greatest caregiving lesson?

With mom, and Alzheimer’s we learned to “agree, don’t argue.” No matter what outlandish thing she would say it really didn’t do any good to tell her she was wrong, it just upset her and confused her. So, as much as we could, we would agree and chuckle about it later.

What do you wish you were told before you became a caregiver?

There is no end date.

What advice would you give to other caregivers?

Have patience and try to look at everything with humor. Being able to laugh at yourself goes a long way.

What’s your best piece of advice for life in general?

I love the expression “Life is what happens while you are making other plans.” Make your plans, but go with the flow, and if something happens to upset those plans, make new plans.

What’s been the hardest part of caregiving for you?

I have felt like I have given up my personal life. At 60 it is hard to imagine that I will have a long-term relationship, and that makes me sad.

What’s the most rewarding part of caregiving?

Caring for my parents has given me a sense of love and family that I would not have had otherwise.

What’s the first thing you do in the morning?

Listen to NPR, which is on the clock-radio, and catch up on world news. Check Facebook on my iPhone. Do 50 sit-ups, 30 leg-lifts, then get out of bed and do 20 squats. That’s my “me” time. I may not get any more “me” time until the end of the day.

What’s the last thing you do at night?

Get dad off to bed, and then sit at the computer, either checking Facebook, playing with genealogy, or playing computer games. That’s my other “me” time. Sometimes I have a 1/2 glass of wine, but not too often.

What keeps you up at night?

I used to wake up thinking I had heard my name being called. I would dash out of my room and into my parent’s bedroom to find them (or now him) fast asleep. Then I got the least expensive baby monitor available, and now I sleep SO much better.

What motivates you?

I love to make plans. Plans for my garden, plans to fix up something around the house, plans for travel, plans for retirement. All motivating.

What’s the best tool or strategy you’ve found to help you with caregiving?

I try to engage dad in his own care, and encourage him to do as much for himself as possible.

In ten words or less, what has caregiving taught you?

Patience, love, and not to fear growing old.

What’s your best habit?

Cleaning up after myself as I go along.

What do you do when you have 15 minutes of free time?

Actually, it takes anywhere from 45 minutes to 2 hours. I go and ride my horse.

What do you think makes a life well lived?

Having made a difference in someone else’s life.

What question do you hope an interviewer would ask?

I guess something about how other family members don’t want to get involved, just want to be in the will (hmmm, sense a little bitterness there?). I believe this may have driven a wedge between my brother (who lives in Australia) and me.

Freedom Rider can be found online at FreedomRider.com and on Facebook, where she offers all you would need for horseback riding with disabilities, physical challenges and for any situation where safety is an extra concern.

Caregiver Profiles: Lisa’s Story

Caregiver Profiles: Lisa’s Story

Dad & LisaLisa is a 46 year old woman who formerly worked as a secretary. She moved from Florida back to South Carolina as her parents started aging, eventually moving in with them. She had the opportunity to take an online medical transcription course and worked briefly. She has a supportive brother who lives in Orlando and helps as he is able to.

Besides “caregiver,” what other identities do you have?

I am an avid antique doll collector, I cross-stitch, read and enjoy baking. I also have a very sweet cat who is 15 years old.

Who had the biggest impact on shaping who you are today?

My mother, aunt and a good friend. They were and are positive influences and are very understanding.

What’s a personality trait you have that you really value?

Compassion is an admirable trait in one’s self and in others, as some people are not so understanding in some situations.

What’s your mantra?

Not sure, maybe be grateful for the friends and family that actually care and things in your life that make it worthwhile.

Who are you caring for? What is your caregiving story?

When our caregiving journey first began, it was pleasant and pretty cool; I started commuting from my apartment, visiting both of my folks, helping with bringing dinner, doing laundry, etc. One day at work, I got a phone call saying my mom needed emergency surgery and eventually I ended up having to leave work permanently [to care for her]. Her health condition declined from then on for several years and I ended up moving back in with them to help more. She and Dad did ok for a while, but he had also had heart attack, etc. So, it took both of us as she eventually ended up in a wheelchair and bedridden. We could not have done it without home health, their doctors and staff. Even nursing facilities and hospitals were helpful for advice on taking care of both of them.

It was also encouraging taking a medical transcription course. I think the hardest thing was when we had to get hospice for Mom and things kind of went downhill from there. I just thought she was going to be around for a little longer. As good to her as they were, it was uncomfortable but better for her to be home. I’m grateful to still have my dad although he is aging, a little Alzheimer’s and has a walker now. For 88 years old, it’s not bad. I have a brother who is a long distance caregiver, but at least he provides some moral support. Although it is a little stressful, I am hoping others can hang in there. There are now a lot more online resources available for those in rural areas and sometimes we can even find friends or neighbors that have the same in common.

What was your greatest caregiving lesson?

Learning to not be so selfish as our loved ones are not around forever.

What do you wish you were told before you became a caregiver?

It is a commitment that you need to make sure you are prepared to stick with for however long it takes.

What advice would you give to other caregivers?

It is emotional and there are situations that you will not prepared to deal with, but have to hang in there.

What’s your best piece of advice for life in general?

Try to make the best of it, especially if you still have your health, family and a few friends.

What’s been the hardest part of caregiving for you?

It’s kind of stressful and not easy seeing parents age, kind of losing touch with and not seeing friends.

What’s the most rewarding part of caregiving?

Being able to do something that actually matters and helps other people.

What’s the first thing you do in the morning?

Take a few minutes to wake up and adjust my mood for the day.

What’s the last thing you do at night?

Unwind by taking some time to relax.

What keeps you up at night?

Stress over health concerns among other things.

What motivates you?

Nice, friendly people that actually care, as you can learn from them.

What’s the best tool or strategy you’ve found to help you with caregiving?

Respect their feelings.

In ten words or less, what has caregiving taught you?

Patience, responsibility and how to deal with difficult situations with respect for the feelings of the ones you are caring for.

What’s your best habit?

Do the best you can do.

What do you do when you have 15 minutes of free time?

Read, cross-stitch, keep in touch with friends or family or watch TV.

What do you think makes a life well lived?

Try to make the best out of whatever situation life hands you.

What question do you hope an interviewer would ask?

If you had something you would change in your caregiving experience what would it be?

Maybe not having the physical challenges that developed in the process of this journey as it effects the quality of care you are able to give.

Meet Judith H: Caregiver, Memoirist

Meet Judith H: Caregiver, Memoirist

20140524-DSC_4880I’m 61 years old and will soon be publishing my first book about caring for aging parents. It’s entitled, The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.  I’m a writer, a teacher, a friend, a sister, an ex-wife, a pet parent, and always a daughter, even though both my parents are now deceased.

Who had the biggest impact on shaping who you are today?

My parents. I got my love of reading and learning from my father. From my mother, I realized the importance of expressing your creativity in whatever form you choose.

What’s a personality trait you have that you really value?

My sense of humor. It has saved my sanity on so many occasions, when nothing else could.

What’s your mantra?

I actually have two. “It is what it is.” and “What is the lesson here?”

Who are you caring for? What is your caregiving story?

I became a long-distance caregiver for my parents in 2007, after my mom was diagnosed with breast cancer and my dad had a bad fall. He passed away a year later, and I helped care for my mom until her death in 2013.

What is your greatest caregiving lesson?

That we can’t always make everything better for a parent, despite our love and efforts.

What do you wish you were told before you became a caregiver?

How every aspect of your life, past present and future comes into play when caring for aging parents. It taps into childhood behaviors, sibling rivalry, messages you received from your family as you grew up, and your own insecurities. Since that also holds true for others involved in your parents’ care, it can make for quite a stew.

What advice would you give to other caregivers?

The short answer has to do with a throw pillow I gave my mother several years ago. It has a picture of a cow lying on its back with all four legs up in the air. Written underneath, it said “I’m fine.” My key advice is: Don’t be the cow.

What’s your best piece of advice for life in general?

Practice gratitude every day. If we can just take a few moments every day to be present in our lives, we can always find something to be thankful for.

What’s been the hardest part of caregiving for you?

Accepting that no matter how prepared I tried to be, there remained so much that was out of my control.

What’s the most rewarding part of caregiving?

For me, it’s those moments of grace when the roles of caregiver and receiver disappear and you are simply two human beings sitting together sharing your story. About who you love; why you love them; what you’re grateful for; what keeps you going during tough times; what you’ve learned over the years; who or what brings you joy. It’s like a gift you give each other.

What’s the first thing you do in the morning?

Give my cat, Addie Jacob a quick belly rub. Only because she stretches out in front of the bathroom door as soon as she hears me wake up.

What’s the last thing you do at night?

I say “Thank you.”

What keeps you up at night?

Imaginary conversations with certain people

What motivates you?

Being of service.

ddg-book-email-sigWhat the best tool or strategy you’ve found to help you with caregiving?

Writing. For me, it has always been the best way to process major life events. In terms of my caregiving experience, it gave me a safe outlet for venting when I was stressed or angry; it helped me gain a clearer perspective on some of the deeper issues that arose from caring for both my parents, and it also allowed me to process the grief that I was feeling well before they died. I facilitate a writer’s group for caregivers at our local library and at every meeting I see what a difference writing makes. The work that comes out of these sessions is very powerful, and sharing with each other creates such a sense of community and connection, which are the very things that caregivers are often missing.

In ten words or less, what has caregiving taught you?

To accept my own limitations.

What’s your best habit?

Making To Do lists, primarily on sticky notes. Unbeknownst to me, they sometimes hitch a ride on the back of my slacks. I’ve actually walked through the grocery store like that and no one has ever said a word…

What do you do when you have 15 minutes of free time?

I write. There are pens and paper in my car, my purse and all over my house.

What do you think makes a life well lived?

The practice of Tikkun Olam. In Hebrew, that means “save the world.” To me, it means making a difference in people’s lives, both locally and globally.

What question do you hope an interviewer would ask?

Has anyone ever said you look just like Barbara Streisand?

If you would like to connect with Judith or learn more about her writing projects, you can connect with her here at The Caregiver Space or at JudithDHenry.com and Facebook.

Meet Mitzi

Meet Mitzi

I’m a wife of 19.5 years to my husband, Ron. Full time caregiver, student, wife, and homemaker. I quit working 1.5 years ago to be home with Ron full time. I volunteer part time at church doing pre-marital counseling and serving as the care coordinator and leader of our marriage mentor group. I just finished my BS in Psych (with a minor in Christian Counseling) and I’m starting MA professional counseling in Spring 2015 through Liberty University’s online program.

Besides “caregiver,” I’m a mom to three adult children and nana to 7 grandchildren.

My dad, who died Jan 2014, has had the biggest impact in making me who I am today. He was a former pastor who encouraged me to pursue counseling.

What’s your mantra? God, please get me to tomorrow without giving up so I can try again.

Who are you caring for? My husband, Ron, was diagnosed with Alzheimer’s disease last spring. Though I knew something was probably amiss a year or two earlier, I was in denial. He had prostate cancer in Dec 2011, and was successfully treated with hormone deprivation and radiation, over 2 year period (successful is a relative term, isn’t it?). He is cancer free, but he lives with effects of no testosterone and radiation, which have resulted in some minor incontinence issues. (Usually minor, anyway).

What was your greatest caregiving lesson? My husbands moods are often queued from my emotions, energy level and frustrations. He perceives that any feelings I am experiencing are caused by him.

What do you wish you were told before you became a caregiver? How to handle the negativity, anger, accusations and frustrations. How to keep someone safe who does not want to be helped and is in denial of impairment (though he knows he needs help at times, his machismo won’t allow him to accept help most of the time).

What advice would you give to other caregivers? Have a support system, like family nearby who can step in to give you a break.

What’s your best piece of advice for life in general? Seek God.

What’s been the hardest part of caregiving for you? Emotionally navigating life caring for someone who appears to hate me most of the time. He has even threatened to shoot me.

What’s the most rewarding part of caregiving? The rare moments when he tells me he loves me (though that inspires caution in me most of the time now).

What’s the first thing you do in the morning? Devotional readings, coffee, walk before he gets out of bed.

What’s the last thing you do at night? Pray, take a sleep aid. I’ve never been one to have trouble sleeping, but now I worry about what he will do, so I have trouble falling asleep and staying asleep.

What keeps you up at night? Worrying that he will get into trouble at night. He goes to bed very late some nights and often goes outside after dark. Sometimes he does inappropriate things like drive, getting on ladders or yard work at night. I can’t stop him and I have to sleep so I take a sleep aid.

What motivates you? Hope, faith, must be love, because without love I would have given up by now.

What’s the best tool or strategy you’ve found to help you with caregiving? Friends and prayer.

In ten words or less, what has caregiving taught you? I have a lot to learn.

What’s your best habit? Walking, devotions, reading inspirational hope filled materials.

What do you do when you have 15 minutes of free time? I read, crochet, and play tablet games.

What do you think makes a life well lived? Heart connections and quality time.

Meet Donna G.

Meet Donna G.

Donna and B

Donna and B

My name is Donna, I am 55 years old and live in Ontario, Canada. I have 2 daughters from a previous marriage who are grown, in their mid-twenties. We have 4 small dogs, 2 of whom are rescues and we love spending summers by the lake.

So besides caregiver, I am Company Controller, wife, mother, horse lover and member of several service clubs.

My great-aunt Kit probably had the biggest impact on who I am today. She was profoundly religious. When I think of her I think “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.” (Matthew 25 31-46)  Caring for others was a way of life for her, and I think some of those values were passed on to me.

My sense of humour is my greatest asset right now.

My Mantra is “ This is my most important job, caring for ‘B’ , but it is not my forever.

My caregiving story

4 years ago, my ex-husband, ‘B’ was diagnosed with advanced prostate cancer.

His mother is 98 and his sister is in her 70s and lives far away. We had remained good friends after our divorce, so I willingly became his companion on this journey. I work full-time as an accountant and am blessed to have a boss that is sympathetic to the situation and allows me to rearrange my schedule at short notice.  My husband is retired and was a carpenter, so he’s happy to do renovations to ‘B’s house when needed and to source vehicles like scooters and vans. He also cooks extra portions to freeze and take to him.

The greatest lesson caregiving has taught me is that I’m stronger than I think.

During a hospital visit the oncologist asked ‘B’ to take off his pants.

I had not seen him naked for decades, but I knew that the lymphedema had grossly distorted his genitals and his groin area.

I told him I was OK with it, which was a lie, but I found that it really didn’t bother me. This was not ‘B’, it was the disease which had reshaped his body.

What do you wish I was told before you became a caregiver? There is no timeline.

I am a person that works with deadlines constantly in my job, and plans a timeline for each project. In fact, ‘B’ is also an accountant. We both wanted to know, how many years? How quickly will the disease progress? In what directions?

It doesn’t work that way. The disease does not conform to a timeline. you conform to the disease’s timeline.

And it can change in a heartbeat!

My advice to other caregivers is to always accept genuine offers of help.

Think of simple things that someone could do and be ready when you are asked “what can I do?” Little things like picking up groceries when asked, sitting and watching a movie and quietly sharing your company, tidying the kitchen…

My best advice for life in general is to cherish the good times and take mental ‘snapshots’ of them so you can recall them when times are not as good.

A perfect sunset, the geese landing on the lake in spring

Trailriding with my family of horse-fanatics

Something funny that someone said

I will often smile on a Sunday evening and say OK, hysterical line of  the weekend. “Margaret!, don’t call me Marg, my mother named me Margaret!”

Anytime something strikes me as funny I put it into my mental archives for later use!

For me, the hardest part of caregiving is the helplessness. I hate watching someone I love in unspeakable pain, knowing there is nothing I can do to take it away. I can’t even offer hope. We both know he is going to die, that’s the reality. We can’t tell what form this death will take and when it will be.

The most rewarding part of caregiving has been the milestones. Each concert that we actually make it to and enjoy together, each church service we are able to go to.

When I think “this will be the last time we do this” and it isn’t!

What’s the first thing you do in the morning?

My daughter lives with ‘B’ now, so I don’t worry much during the night, but I always check my phone for texts from him and text ‘good morning, how was your night?”

What keeps you up at night?

Worrying about what ‘the end’ will look like. Will he be in pain? Will it be long and drawn out, or blessedly brief?

Mostly, will be be able to stay in his home until the very end?

What motivates you?

B and I never stopped being friends. He has always been good to me and our daughters. He has been a wonderful father to them and a wonderful friend to me.

I want to share this last part of his journey with him.

What’s the best tool or strategy you’ve found to help you with caregiving?

Remembering that right now, today, this is my most important job. Yes, I have to keep the job that earns our income, and I have to be a good wife and mother, but the most important thing is to make sure that B receives the best care possible and is kept comfortable. I don’t ‘juggle’ caregiving with other things. I provide support to ‘B’ and juggle the other things.

In ten words or less, what has caregiving taught you?

Don’t be afraid to advocate for your patient – your voice counts!

What’s your best habit?

I keep an updated medications list in my purse and scanned onto my computer with the schedule for taking the meds as well.  2 other family members have a copy. Not only are we prepared at the hospital, but any of us could prepare the weekly meds if we needed to.

What do you do when you have 15 minutes of free time?

I love to read, so I curl up with my Kobo. This generally leads quickly to a nap- but there’s nothing wrong with that!

What do you think makes a life well lived?

I think a life is well lived if you inspire others to lead a caring life. I am so proud of my children, not only for the way they care for their dad and stay involved in his life, but for the way they get involved in other causes that they believe in. They seem to have a very real sense of fairness. I hope that some of that came from me.

What question do you hope an interviewer would ask?

When times are tough, where do you draw strength from?

I had always imagined that when B’s health became worse, I would seek support from the clergy and members at our church.

Because of the unusual situation – caring for my EX-husband, albeit with the full support of my current husband – many seem uncomfortable, so I keep my ‘secret life’ as a caregiver to myself.

I belong to an old order, with Masonic roots, called the Order of the Eastern Star.

I have never been judged by my fellow members and have felt comfortable attending functions with both ‘B’ and my husband with me.

I never attend a meeting without several members approaching me and asking how ‘B’ is and letting me know that they are only a phone call away.

This was an unexpected, and very welcome surprise!

Caregiver profile: Bianca M.

Caregiver profile: Bianca M.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Bianca

Tell us about yourself.

What can I say? I am 22 years old, fixing to be 23 years old in December. I am currently studying online for my bachelor’s degree in criminal justice with a minor in sociology. I am big sister to two boys and sibling to two others I have never met.

Besides “caregiver,” what other identities do you have?

I am a book-lover and a cat-lover, big sister to two boys, four if you count the siblings I have never met. I am also the girlfriend of a 911 dispatcher and an online student attending Eastern New Mexico University. I currently hold Jr status, got two more years of college and I cannot wait to graduate!

Who are you caring for? What is your caregiving story?

556547_4252822444312_151259010_nI was caring for my boyfriend’s grandmother. When I met her for the first time, her usual caregiver was fixing to move out of town. When that happened, she kept going through caregivers and none of them seemed to survive nor get along with her. I was recently out of a job– the daycare I worked for became strapped for cash and I was let go for reasons that were not known to me. After not having a job for months my boyfriend pitched to me the job of helping out his grandmother, someone who he also considered his mother. She was very close to him and she practically raised him off and on; they had a very close bond that I wished for.

About one to two weeks later, after going through training, I started my first day as her caregiver. I can admit it was hard, she yelled at me for so many simple mistakes that I kept making, but I told myself I needed this job. I could not lose this job. I was 20 at the time and losing my calm, I could understand she was in a lot of pain and she was sick. She needed my help. I could not let her down, especially since her “son” was my boyfriend and I wanted to make him proud too–so I stuck it out.

The company that I worked for wanted me to see other clients, but his grandmother insisted that I stay with her because I was unfamiliar with the town she lived in and knew no-one.  As time went by, I made less mistakes and got my job done and our relationship improved. When I was done with everything, I sat with her and talked with her and she shared stories of her grandkids (my boyfriend and his brothers). I shared stories of my life and what I’ve been through and I began to think of her as the grandmother I never had. She often told me hints about my boyfriend and wanted to teach me so many tricks that he liked. Recipes that she made, she wanted me to have, but she never got the chance to.

Her health declined about a half a year into me working for her and she soon lost the use of her legs due to an ongoing illness. I am a “small large person” you could say, as I am plus-size but I am small and so I could not lift her to help her at all. I soon was transitioned out of the job, which was given to another person who could be there more than I could be.

I often stopped by with my boyfriend and talked with her, and she often asked if I could stay the night with her. I declined almost every time, which is one of the things I feel the most guilt about. Don’t get me wrong; she had family that loved her and stopped by on occasion, but it was seldom she wanted company and that’s all she wanted. She was a homebound person most of the time, due to her blindness and the illness with her legs. She lived alone, my boyfriend had moved out and gotten a place with me, so when he was gone, she lived alone. That is the one thing that keeps going through my mind now.

Once her health declined we did not know that would be the last few months we would have with her. She was transferred to an out-of-state hospital and soon after that she passed away. I had plans to surprise her that weekend by traveling up with my mother to see her. About five days before I was supposed to leave we all got that dreaded phone call early on Saturday morning, and she was gone…she gave up the fight that none of us thought she would give up. Coming back to it I feel a lot of guilt for not staying over and keeping her company. That’s all she wanted was someone there to pass the time.

The funeral came and went, I showed my true spirit. I couldn’t stop crying about it; I kept thinking about everything she taught me, everything she told me that still rings true today. The one lesson she always told me was no matter what is going on in your life always keep your head up and smile because nothing is bad forever.

What do you wish you were told before you became a caregiver?

This one seems easier: you are going to need a lot of patience and a lot of self-control not to get angry and fight.

What advice would you give to other caregivers?

Don’t over think everything, don’t take things literally because sometimes things are said out of anger and sometimes pain. I remember her getting very angry at me because I touched something that hurt, I cried because it broke me, but about five minutes later she said sorry and gave me a tissue.

What’s been the hardest part of caregiving for you?

When she passed away, it was getting used to the fact that she wouldn’t be around anymore. She wouldn’t call me to ask me the “gossip” of the day, or blow up my cell phone asking me how my day was going on my day off. It hurt to know this.

What’s the most rewarding part of caregiving?

Having the person you are caring for happy, and in a good mood because they are cared for.

What’s the best tool or strategy you’ve found to help you with caregiving?

Being patient; enough said.

In ten words or less, what has caregiving taught you?

It has taught me patience and understanding of someone’s life and health.

 

You can learn more about Bianca on her blog.

Caregiver Profile: Sandy J.

Caregiver Profile: Sandy J.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Sandy

SandyI’m a parent, grandmother, dog lover, antique fan, music lover, and a person who genuinely cares for people and would love to be able to take away all of life’s suffering. I care for a retired female veteran. Before becoming a caregiver I didn’t realize how consuming it would be…both of my time and myself.

Sandy and her son

Sandy and her son

My advice for other caregivers would be to take life one day at a time, one opportunity at a time. Don’t take anything personal. It’s easier said than done, but possible. The hardest part of caregiving has been not having time for myself and my family. The most rewarding part is knowing I’m helping someone have a better life. The things that matter most to me are other’s happiness, my family, health and well being.

Caregiving has taught me understanding, appreciation, acceptance, thoughtfulness, and selflessness. It’s an honorable thing to be a caregiver. I’m making a different in people’s lives.

Caregiver Profile: Andra H.

Caregiver Profile: Andra H.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Andra

I’m 44 and engaged to the love of my life! Mom to one daughter. I love life in the slow lane, watching the snow fall, the river flow past, and lightning storms. An animal lover since birth, I am astounded by the amount of cruelty people can show; to both animals,Andra H and humans. I love to curl up with a great book, and could read all day. Not a coffee drinker, I’m a certified Pepsi-holic, and chocolate lover, I love home made buttery popcorn! I battle with depression almost always.

Besides being a caregiver, I’m a crazy cat lady, dog lover, hunter, fisherman, Mom, artist, cook, reader, doctor, nurse, patient.

I work at an assisted living center for the mentally ill. Our residents are the worst of the worst. The ones that would otherwise be in jail, or in a state hospital. They have burned their bridges. I started working there after ending an unhappy, abusive marriage. I moved close to home, to be near my family; And I found another. So far, I have been there for 12 years. It’s had some really rough moments, and some I would not trade for the world. Every day is different. Bi-polar, borderline personality disorder, TBI, Dissociative Identity Disorder, paranoid schizophrenic, fetal alcohol syndrome, Hunningtons, Downs, Williams Syndrome, Klinefelters, dementia, Autism, sex offenders,  and so many more that I cannot recall off of the top of my head.

I wish someone had told me to never take it personal. These people get frustrated, and angry, and they come up with some really creative profanities to call us. But, it’s not personal. It’s them, getting rid of anger, and frustration, They have no positive ways to do it, not in their heads. I wish I had been told how much of this you are going to carry around with you. Every day. No matter if you are at work, or at home. You don’t get away from it, just because you go home.

Andra H catching a very large fish in a netCaregiving is going to hurt. You will get close to the people you care for. And when they go… wether it be to a different place, or death claims them. It’s going to rip your heart out.  The residents we care for will treat you like you are their best friend and stab you in the back.  It’s not personal. Also, find a hobby. Wether it be reading, crocheting, making flies, crosswords, you need something that’s basically mindless… to let your mind slow down.

What’s the hardest part of caregiving for? Physically? The stress. The rest? Oh geezze.. I would have to say the worst part? Its a tie. A tie between holding a man’s hand while he is dying. When he doesn’t let go of you, even though they are loading him in an ambulance. Knowing that is the last moment you have with someone you have spent so much of their life with. A tie between that and having to have a resident removed from the facility, to go to jail, or a state hospital. Knowing that we weren’t helping that person. Knowing that they will end up in a place where no one will know them. A place that isn’t home to them.

The most rewarding part? Having someone with no family, or the family has written them off, come to you, and tell you how much they appreciate something you did. How much it meant to them. It’s a humbling experience. On days when I just don’t think I can do it for one more minute… those are the moments that keep me there. Knowing you are making a difference in someones life.

One of the strategies that makes caregiving easier is to never yell. If two people are yelling, no one is listening. Speak quietly, and listen to what that resident is saying. Really hear it.  Sometimes its okay to walk away. If you feel like you need a moment, take it. Never take anything personal.

Caregiving has taught me to cherish each day. Patience. Empathy. Love.

Caregiver Profiles: Sue G.

Caregiver Profiles: Sue G.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Meet Sue

I have never been one to overtly show my emotions; but as I travel my newest emotional roller coaster, I have learned that emotions are just a part of each of us, they need not be justified and it helps when I share. I still have difficulty with the word ‘caregiver.’ It seems cold and impersonal. I am a wife standing with and giving support to my loved one.

I am a wife, mother, grandmother, poet, photographer, friend, neighbor, golfer, tennis player.

As a senior, and primary caregiver to my husband who is recovering from a stroke he suffered in 2012, ‘precious moments’ seem so all important to capture. Writing poetry captures my emotions and releases my every thought and the tensions within. I share so others can relate and not feel so alone. My latest book, From My Heart in Pictures and Poetry has brought comfort and some degree of understanding to many other caregivers and friends.

I have recently begun speaking engagements to organized groups on the emotional impact of caregiving.

I am a contributor on the All Poetry website. My poems have been published in ‘Caregiver Magazine’ as well as several poetry volumes.

As a photographer, I try to capture nature, time, space, interaction. I look to nature for harmony, composition and design.

We all have certain things we wish we could have known ahead of time. I wish I knew more about stroke, how to prevent it, and the emotional impact it places on family and friends for the rest of their lives. I would have understood and reached out to others more.

Caregiving re-arranges your life and forces you to set new priorities. It changes relationships and overwhelms you with ‘to do lists’ and responsibilities. Obstacles challenge us to find new routes.

We tend to reach out to friends and family in an emergency, then things calm down, and we go on with our lives, never giving thought or understanding to the long term impact of the ongoing traumas. Nobody plans to be a caregiver. Yet, everyone is, will be, was, or knows a caregiver at some point in his/her life.

My advice for other caregivers is…

  • The more you know about the individual and his diagnosis and his disease, the better prepared you will be to provide care.
  • Be responsive to change.
  • Know your limitations and strengths.
  • It’s not only okay, but imperative that you reach out for help.
  • To adequately give care, you must take care of yourself.
  • You have the right to feel what you feel and to express those feelings.
  • You maintain the right to your own life outside of caregiving.
  • You have the right of choice, to decide what you will or will not do. This includes the right not to be manipulated by anger, fear, or guilt.
  • The weight of responsibility for another weighs heavy on my shoulders.
  • Being on call 24/7 with no easy respite.
  • Control issues with my loved one.
  • Reaching out to others for help.
  • Knowing I’m helping the person I love.
  • I am a positive force.
  • Proper sleep habits are essential.
  • Learning about the individual and his disability.
  • Taking ‘one day at a time.’
  • Staying in step with and learning to be responsive to my husband’s changing needs.’

Paying for Senior Care

Paying for Elder CarePaying for Senior Care and the Eldercare Financial Resource Locator Tool were created and are maintained by the American Elder Care Research Organization. The organization’s mission is to assist individuals in the planning and implementing of long-term senior care. The website is designed to help families and caregivers locate information about long-term care resources for their loved ones, and to find the public and private programs available to assist in covering the cost of such care. Through browsing and search, users are able to discover what programs and options are relevant to them.

Caregiver Profile: Jennifer C.

Caregiver Profile: Jennifer C.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


 Meet Jennifer

I am the caregiver of my fiancé (would be husband, if finances allowed it). We have been together for 5 years, and I have been his caregiver for 4. I just wanted to express that this is the most rewarding job/relationship I have ever been involved during my life. Not only have I seen a huge change, determination, and motivation in him, but also in myself. I have truly been lost in this world without finding this incredibly strong man! He truly his my savior, as much as he would fight you in telling you I’m his. We always stick together, but that doesn’t always make things any easier. There are always hard trials and tribulations, that always make us stronger on the other side! It is always so nice to see that we aren’t alone in this, sometimes very cold and cruel, world. We have seen some incredibly wrong injustices, especially in the medical field. We just want all the caregivers and their loved ones alike to know you are not alone!

Caregiver Profile: Sally S.

Caregiver Profile: Sally S.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


 

I am a mature and independent Caregiver with 5+ years of experience.  As I near year four of widowhood, I have reconstructed my life towards knowledge and familiarity of caregiving, steering me toward my newfound passion and career as a caregiver.

Besides “caregiver,” I am a grandmother of 9, love to read, and currently just finished my studies as a Certified Senior Care Auditor, which is a new and upcoming service in the caregiving field.

My caregiving story began with the care of my beloved husband of 33-years, early in 2009. Without the insight of knowing what was involved in his care, I quickly educated myself to the astuteness of caregiving. After my husband’s passing in 2011, I came to accept life as a balance of holding on and letting go, thus to appreciate what was and what will be. And not long afterwards, I was privileged to care for my 85-year old father until he succumbed to a stroke in 2013. I am proud to say that without these personal experiences, I would have never thought about a caregiving path as a career. I have since worked independently for clients, where I find making a difference in their everyday lives rewards me in so many ways.

Before I became a caregiver, I wished I was made aware of all the resources and education that is available; whereas I had to learn myself about the detail-oriented tasks involved and make the time to research how to give the proper care.

My advice for other caregivers is to continue to educate yourself and sign-up for online newsletters and/or join a caregiver organization.

The hardest part of caregiving for me was disallowing myself to NOT get too close to a client, as I have a tendency to be very compassionate towards them, which then becomes very hard on me when I no longer care for them.

The most rewarding part of caregiver is knowing that I make a difference in my clients everyday life by offering life-enhancing quality care services…to help my clients live their life to the fullest in the comfort of their own home.

The best and most wonderful tool that I use for caregiving is a Client’s Binder! The daily documentation, medication list, health issues, doctor’s info, etc. is a lifesaver tool. While caring for my husband I learned that I needed to be more organized in order to perform my care needs easier; that is why I put together the Client’s Binder. I always keep the binder in the client’s home, as I want the client and or family members to have access to read whenever it’s convenient for them.

I am gratified to say that caregiving has taught me patience, perseverance and purpose.

When the invisible family reappears

When the invisible family reappears

Many families rally together after a diagnosis or an accident, but a few weeks later they’re nowhere to be found. Caregivers can face months or years of little to no family support, only to have those same absentee family members reappear when the end is near. Suddenly, everyone has their opinion on the medical decisions you’re making, the care you’re providing, and want to be there every moment. The caregiving routine and rapport you’ve established goes out the window. How can you manage the situation without a battle?

Deborah C. H. W. captured how a lot of caregivers feel:

I too have been the sole caregiver for my husband. [His family] didn’t come and help for the last seven years, so they are not there for him and you, they are there for themselves. They are taking up your space and time with him. If they really loved him and cared about him, where have they been for the past seven years?

Is your home being invaded by controlling relatives? Here’s how other caregivers have coped with the situation and regained control of their lives:

Figure out what you want

Don’t allow their guilt to become your problem. – Gilda S.

You are under stress and need peace around you…If you want their help take it, if not, tell them kindly. This stressful time in your life and especially your partner’s is not about them and they should respect that. I’m sure they are hurting as well but they need to support your decisions. – Cheryl M.J.

Know your rights

[If you’re not legally married] make sure you get something in writing from him and a witness that gives you some right! – Clara D.R.

If your partner agrees, get power of attorney asap. You are the one that should be able to make decisions; you’ve been doing it all along while being his caregiver. – Carolyn Z.M.

Check the laws in your state for significant other. Unfortunately, you may be in for a fight with his family if they have the power to move in on you. Hopefully, you have your names on items you shared as a couple. – Christine D.R.

Do you have yourself covered legally? Durable POA.? Is the house in his name or yours? You should talk to your attorney and make sure your bases are covered so you don’t find yourself suddenly with nothing. Put away your valuables where they cannot be stolen. – Toni E.I.

Figure out what your patient wants

Ask your partner what HE wants, discuss your fears with him and Hospice, then ask Hospice to support whatever decision is best. – Linney E.

You may have to remind them, or have someone else do it, that this isn’t about them. It’s about your partner and making his life comfortable…If they kick up a stink gently remind them that tensions are not going to do your partner any good. – Madonna N.

Figure out what the family wants

Everyone just wants to spend time with their loved one and the OP needs to either set the boundaries clearly or have someone set them on their behalf. This is a tough time for everyone. – Rashida H.

They need to grieve and say goodbye too even if they missed out on time they could have had for whatever reasons. Set your boundaries but remember that many need to say good bye & it might not be in ways that you like or tolerate. People take illness the way they take life and sometimes it’s too little too late and only to make themselves feel better and sometimes it “mends fences” that give a person peace to let go and pass in peace. – Minne B.R.

I suggest you make one person the liaison person so as things develop you tell that one person who then can keep others informed. This takes the stress away from you at repeating yourself over and over again. – Lucy Rea

Have empathy for them, too

Very often family members, when they are not involved with the day to day don’t realize the toll it takes on the primary caregiver and sometimes how downright unreasonable their demands or requests are. – Betty M.

I think your in-laws are just trying to help, they also want to be near their child. You need to try to open your heart to them, see their suffering and their need to help you at this time…Be tactful; no one gets hurt and everyone wins. – Missy B. K.

Since he is private maybe he did not want anyone to know; I can say I know someone like that. It might not be that they did not care, just situations kept them from being there. There is so many scenarios but I feel everyone should think about the situation and respect each other. Everyone loves and shows how they care differently. – CherylAnn N.

Try to embrace this time and accept the help (I have just been there so I know what you feel), try to remember that before there was you, there were his parents, he is their baby, no matter what age and this will be their last months with him also and so they need to have memories and feel the comfort of knowing they shared in his last months here…look at this as a time to let you get some much needed respite and rest and time for yourself to a certain extent….love wins out, love them, embrace them, it will make all the difference. – Dianne B.

Find a compromise

There is most likely some guilt and resentment going on. They feel guilty that they haven’t been there and resentment that you have been (he chose you not them). That being said, maybe you can work it out to benefit all. Talk about caregiver burnout and a way to give him the best possible care is to take care of yourselves too. Work in shifts, so everyone gets equal time and rest/self care. For his sake, smiling faces are best and less stressful for him. 12 on 12 off or 8 hour rotating shifts or 4 on 4 off. – Tonia M. J.

Set boundaries

Thank everyone for the thoughts and concerns, but politely inform them that you husband needs the peace to remain stress free and you or someone else will inform them of any changes. – Jennifer L.S-M.

You don’t have to tolerate this behavior and you have a right to keep your home serene. – Denise A. T.

Post the visiting hours outside the front door and say it’s overwhelming to both of you to have your lives disrupted. – Cheryl W.

Give them time but do set boundaries. – Minnie B.R.

Get support

I am a hospice nurse and it is our job to advocate for the family…I have no problem standing up for my patients, especially in delicate situations. – Chelsea M-M.

I would recommend social worker and pastoral services to help navigate this difficult situations. They can advocate for you both in a non threatening way what is best for your partner. – Kimberly E.

Absolutely talk to social worker or case manager. Have a close friend to be your main point to communicate with outsiders this is what many hospice volunteers do. The families appreciated this as they have a difficult time to say NO. What we want people to understand that close loved ones need their quality time with their loved ones. – Anita B.

My mom went through this with the passing of her boyfriend in her home. HIs family had nothing to do with her before this time. It was hard but at the same time, that was his family. You have to do right by allowing them their time but they need to also respect YOUR time and his. Hospice really helped her…they stepped in without her having to stress and when it was all said and done and his family left…..they stayed to help her out. HER. Not them. I really recommend them. – Leslie A.

Express what you need

They should also be prepared to help physically with things like cooking and cleaning. – Patricia D.M.

Put it in perspective

It can be very hurtful, but keep reminding yourself not to take any of it personally – its not really about you, its other people’s fears that are causing their behaviors. – Linney E.

Caregiver Profiles: Marge S.

Caregiver Profiles: Marge S.

My husband, Orville, and I have been married 48 years. He was a widower with 4 sons, ages 5, 7, 10, and 12 when I married him. A year after our wedding we went to Misawa Air Base Japan for 5 years. Upon Orville’s retirement, we settled in Cedar Rapids, Iowa. In 1980 and ’83 we went to Bible School in Oklahoma and pastored a church in Spencer, Iowa, for 5 years and then went back to Cedar Rapids. In 1995, I went back to college and got my BA in Graphic Design/Art. In 2000, we sold everything and moved into a 36′ Fifth Wheel RV and traveled the country. We still live in our RV but we don’t travel anymore.

Besides being a “caregiver,” I’m a parent, cook, graphic designer, photographer, grandmother, great-grandmother, and minister.

I’m caring for my husband, Orville. I’ve been caring for him on and off for at least the past 30 years, but more so since his first back surgery in 2008. In December 2012 we stopped traveling because of Orv’s health and settled down on our leased lot in an RV co-op in Lakewood, NM. Traveling in 2012 had been filled with many health issues for him and a hospitalization in Anderson, IN for 10 days with staph in the blood. In 2013, Orv had another back surgery and other hospitalizations for dehydration.

Finally, in June of 2014, a physical therapist noticed parkinson-like symptoms and told Orv he should see a neurologist. That diagnosis was confirmed and we decided to apply to become a resident at Escapees RV Club CARE (assisted living in our RV) in Livingston, TX. We were accepted and arrived here on September 10, 2014.  This move was as much for my benefit as for Orv’s. I was totally exhausted. Now we eat our meals in the CARE Center, they pick up our laundry and do it once a week, and we are surrounded by caring people who help us as much as we want. I don’t feel alone anymore because we are in a community of people who all need assistance.

Coming to CARE-Assisted Living in our RV is the best thing that helps me. I still do just as much caregiving but not having to cook or do laundry and knowing I have a nurse to call makes life so much easier. Before coming here Orv has “home care” where a nurse and physical therapist come every week and that, too, was helpful because we always had someone we could ask questions of.

The best advice for caregivers? Be sure to find a way to take time for yourself. Turn to God. If I didn’t have Jesus Christ in my life giving me strength, I could not make it. I often say “The joy of the Lord is my strength.”

One of the hardest parts of being a caregiver is that most people ask “How’s Orv?” and they don’t ask about me. They don’t realize how exhausting it is to be a caregiver. It leaves you feeling very alone.

The most rewarding part of caregiving is the gratitude of my husband.  I know all caregivers can’t say that. I’m so grateful that he appreciates what I do for him. It makes it bearable.

The greatest lesson of caregiving: Love and patience are essential.

Getting ready to transition to nursing home care? Here are our top tips

Getting ready to transition to nursing home care? Here are our top tips

Here are suggestions from other caregivers for the elderly who have been there and done that in how you can make your loved one comfortable as they transition to a residential care facility:

 

Know when it’s time

If I was dealing with memory loss I would want my loved one to at least become familiar with their new surroundings before [their health is deteriorated]. I have had senior parents have their daughter put in a residents home in case they died before her. They wanted the staff to hear her stories and the life she once had. – Dani H.

I was there every day for hours but she couldn’t remember, even if I just left. – Jane C. A.

Fostering friendships

Ask about activities provided and try to get her involved. – Betty S. H.

[My mom] was in a facility run by nuns and priests and at least once a day she would go to the chapel for services. – Eluisa I. L.

Staff will speak with residents more often if you let them know how sad she is…as well as inviting patients to activities more frequently. – Diana M.

Celebrating memories

Always make sure they have pictures of their own mom and dad in their sight and fill their room with family pictures and their own things that make them feel comfortable. I also left family albums so she and her private PSW could look through them, when I couldn’t be there. – Jane C. A.

Music!!! Get her an ipod or Walkman with old cds that she loved as a younger girl. Its made a WORLD of difference in my mom. – Cindy L.

Make videos of family gatherings and let her watch it as often as she wants. – Tonia B.

Sing old songs; most likely, she will remember every word. – Cindy L. L.

Arranging visitors

Have a family meeting if you can and schedule your days. Share how the visiting went and share wants and needs of your person. – Debra K.

I have a sign in book in my mom’s room. – John-Roz S.

When I worked in programs I had an email set up called eldersonemail for recreational purposes only. Every Wednesday family had until 8:00pm to send emails on Sunday the recreation staff would print them off seal it in an evenlope with their name and a volunteer would deliver it to them. Writing letters is difficult for many families. I learned this from families feedback. Setting up an email system worked great. – Dani H.

Advocating for excellent care

I helped family members make an album about their parent or spouse with pictures of who was in their life and names. I also had them write their likes and dislikes, key words to use or not use, how they liked to be bathed, etc. It would stay by their bedside table. Senior helpers would pick it up and get to know the person as an individual. – Dani H.

Meet Todd M.

Meet Todd M.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Todd M.

Who are you caring for? What is their condition?

I care for my wife, Marie. She has Secondary Progressive Multiple Sclerosis. I, too, have relapsing remitting MS, fibromyalgia, and deal with my PTSD.

Besides “caregiver,” what other identities do you have? (ex. Parent, gardener, manager, dog-lover)

Step dad, but her kids are all in their early 20’s and live in the North East, while we’re out West. I only talk with two of my step kids, as the others just don’t care what shape there mother is in anymore. I was a caterer, restaurant consultant, and chef before my wife got bad. I also own a small business where we sell her crochet products and knitting projects to make a little more cash – but I also pay sales tax to the state.

What do you wish you were told before you became a caregiver?

Nothing, really. I knew this was coming, I just didn’t think it would be this soon. I took care of others professionally in my early 20’s.

What’s been the hardest part of caregiving for you? What’s the most rewarding part of caregiving?

The hardest part was having to take the frame off of the bed so I could get her into bed easier. It’s harder for me to get out of bed, as I’m 6ft 2in, but she is only 5ft 1in. We can’t afford a PAL or Hoyer yet or an adjustable bed that can lower to the floor.

We have more of a personal connection now than before. We have gone thru hell and back a few times with me having heart failure in 2013, but we kept her out of a nursing home.

What’s the best tool or strategy you’ve found to help you with caregiving?

We have strong Bible friends and prayer we pray a few times a day. Our pastors drop by to pray with us and help me with items I can’t do by myself. Also the internet and Facebook groups that I run now. My wife can’t handle the day in and outs of the groups she started back in 2009.

In ten words or less, what has caregiving taught you?

To be patient with my wife knowing one day I will be in same boat


Want to connect with Todd?

Reach out on our community message boards.

Meet Portia A.

Meet Portia A.

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Portia A.

Who am I? I am 42 years old. I’m a single parent of one adult son. I take care of my elderly Mom full time. I live in Maryland. I am an animal lover and crafter, I suppose.

I care for my elderly Mom and have for the last 6 years. Of all my living siblings, I was chosen for this. It’s not an easy job, to say the least, but I get up every day and take on everything that I need to do to see to my Mom and my family’s care, safety and well being.

Every day is different and I never know what will happen, so all I can do is get up and start the day positive and just take on whatever comes my way. I don’t always have all that’s needed to get this job done but somehow I manage and I’ll never give up. The stress, the physical toll it takes on my body, mind and heart, the frustration, the fun times and the not so fun times are all part of care giving. This job didn’t come with a handbook and I have had no professional training so every day is a learning experience for me and my Mom because for her, becoming elderly didn’t come with a handbook either.

I love my Mom and will do whatever is in my power to make her happy, comfortable and pain free until she takes her last breath. I do little things to maintain my sanity, as every care giver needs, but it seems it’s never enough. I try hard not to complain but on rare occasions like when I’m just too exhausted to smile through it, I vent. My son helps with certain things when I need him so I do get some help. I listen to music as a coping tool to get through just the simple task of cooking a meal or cleaning up or just to redirect my mind and regain some energy. I won’t lie and say I enjoy it but I honestly don’t see anyone else in my family doing it and I commend all those who do this professionally and do enjoy it. I do this because I’m a Chosen One and it is my responsibility and duty to repay my Mom for the task she had of raising me and my four siblings by herself since I was 8 years old. It’s what family is supposed to do and I wouldn’t change a thing even if I could.

I wish I was told how to have more patience and understanding about how the elderly mind works.

The advice I would give other care givers is be patient, put yourself in the shoes of the person you are caring for so you can have a better understanding. Do your research in all aspects of caring for a loved one and for yourself. Most importantly, NEVER GIVE UP!

The hardest part of care giving is …hard to answer. It’s many things that make it hard like the worrying about my Mom and if I’m doing or not doing something right or wrong, it’s the lack of sleep to do the job, the lack of resources and the lack of the help that is needed. Caregiving is not a “one man job” and I’m still not sure how I’m doing it!

I would have to say that the most rewarding part of care giving is knowing that I’m here for my Mom and I don’t have to worry about some of the horrors that people go through having their loved one not being properly cared for or abused while living in a professional facility.

The best tool or strategy I’ve found that helps me is my Faith and my determination to figure things out to care for my Mom in the best way I can.

Caregiving has taught me that I’m stronger then I realize and how important it is to take care of the elderly when they no longer can do it themselves.

Want to connect with Portia?

Reach out on our caregiver forums.

Q&A: Palliative Care

Q&A: Palliative Care

Question:

I’m requesting help or ideas. Unfortunately It’s time for my mother (who has Alzheimer’s) to go to a care facility. She is currently at home. She has refused to get into a vehicle for almost a year now. For her safety and others, what should i do?

Answer:

If you are taking care of a loved one at home, you might consider palliative care through a home hospice. Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

In my experience with home hospice, they provide 3 CNA visits per week, a skilled nurse once a week, an MD visit once a month, and a social worker once a month. They also have respite volunteers to help the caregiver take some time off, various counselors and chaplains, podiatrists, and even hairdressers. They prescribe all the necessary meds, and supplies like ointments, diapers, AP mattresses, wheelchairs, etc. All of it was covered by Medicaid. They will assist you in caring for her at home, a familiar environment, which is much better than being in a facility. However, this is a decision that should be made according to the condition of the patient, and abilities of the caregiver.

Before resorting to palliative care, a regular home health care agency might be a better option. They offer physical, occupational, and speech therapy visits in addition to CNA and skilled nursing. When a patient is past the point where therapy is effective, that agency can refer you to palliative hospice care at home, or in a facility. If you opt for a facility, do very exhaustive research, so that you can find the best one, one that you will have confidence in.

There are many excellent professional caregivers in facilities, and you shouldn’t feel guilty about making that choice. I have been down all these roads, and personally, I considered a facility as a last resort. Not because their caregivers are “bad”, or they don’t give quality care. It’s just that too many of them are under staffed, with one or two CNAs being responsible for 25 patients.

My mom refused to eat, or participate in group physical therapy in the facility, which was an unforeseen consequence. I found myself spending the entire day there, from 8:30 AM to 9:00 PM, every day, accompanying her to therapy sessions, feeding her, and even changing her when she was incontinent. She would only eat for me, and wouldn’t allow anyone else to feed her, so I brought her home, and got home assistance, first from home health care, and then from hospice. That’s working out much better.

Every situation is different. Whatever you do, don’t feel guilty about your choices. Do your homework, get all the information you can, and make a decision that works for your particular situation, knowing that you are acting out of love, putting the patient’s needs first, and doing the best you can.

It’s not an easy situation to be in for anybody, and can be overwhelming, but over time, experience and training will make it less overwhelming, and more manageable. Especially when you have professional assistance, so seek help. There are a lot of good people in the field who will help you, you don’t have to go it alone.

WebMD has additional information on palliative care.

The community member who wrote this helpful post wishes to remain anonymous.

 

Caregiver Profiles: Lori R

Caregiver Profiles: Lori R

Who is a caregiver?

Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.


Lori R with her husbandLori R

I was once an executive at one of the largest banks in the country and an executive assistant prior to that. Being a caregiver is nothing like my work experience!

I’m the last of 4 girls.  Home is the edge of the world: coastal North Carolina. I’ve lived in Chicago and Cleveland. I prefer North Carolina hurricanes to anything the Midwest states call winter.

At 35 years of age I became a caregiver to my husband after 6 months of marriage. Its been 8 years and though it’s not easier, it is more predictable. I’ve begun to care for my 83 year old mother recently.  I’m also a mother and recent grandmother.

What do I wish I’d known before becoming a caregiver? I wish I had known about the evolution of isolation caregiving creates. This being the hardest part of caregiving, I’ve learned to rely on myself and exercise great resourcefulness in relationship building. Part of those resources include building a social network with other caregivers. They provide such compassion and insight into familiar territories.

Lessons are a daily blessing and burden of caregiving.  Patience, above all, is the greatest lesson. Dividing my time between responsibilities while carving a pinch out for myself is still a lesson I have to master even after 8 years at it.  Researching everything I can about the medical condition as well as experimental therapies and treatments has been crucial to not only my husband’s health but to my sense of control.

Want to connect with Lori?

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