WELCOME, CAREGIVERS
“There are four kinds of people in the world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.”
~Former First Lady, Rosalynn Carter
THE CYCLE OF LIFE
There was a time when families lived together; if not in the same house, then in the same town or village. If a family member got sick or injured, they usually died at home surrounded by family and friends, and their body stayed in the house until their funeral.Familial caregiving was a given: grandma and grandpa helped to care for the children and run the household, and lived in the family home until they breathed their last breath – the whole family was involved in their care and children grew up witnessing the entire cycle of life.
These days family members often scatter to wherever jobs, school, weather, cost of living, or whims take them. That, combined with modern medicine, longer life spans, and retirement living options, have made caring for our loved ones, and their inevitable death, something we rarely think about until someone becomes very ill or can no longer do everything for themselves. It can be quite a shock to suddenly find that someone you always thought of as invincible is now depending on you for their very survival.
THE INEVITABILITY OF CAREGIVING
When we’re young we think we’ll never get sick or old. But it happens – sometimes suddenly, and sometimes so slowly we don’t even notice, until we realize that more and more of our conversations are about aches, pains, injuries, eyesight, indigestion, and illness. All around us the people in our lives are aging noticeably, getting sick, and even dying. Our parents are getting frail or have passed on, and we all know at least one person in our life who’s been diagnosed with some kind of cancer or other serious disease. Male or female; spouse; partner; sibling; son or daughter, if you aren’t a caregiver now, chances are you’ll be one before long. And that’s why we’re here: to support you and encourage you with our own experiences, and to share lessons we learned along the way.
If this is your first time caring for a loved one, it can be daunting and scary. But you can do this. All that’s needed to be a good caregiver is the desire to help and give comfort. The rest you’ll learn, one day at a time. Unfortunately, “Caregiving 101″ isn’t taught in schools, even though it’s a natural and long-practiced part of life. If your loved one’s condition becomes too much for you to handle on your own, we’ll be here to support you while you’re finding a care facility and during the difficult adjustments that may follow.
This blog is for caregivers:
- Past caregivers who are trying to recover from their ordeal and/or loss
- Present caregivers who are currently caring for an ailing loved one
- Future caregivers, who are seeing the signs and realizing that soon they will have to do some serious decision-making.
THE EMOTIONAL AND PHYSICAL TOLLS OF CAREGIVING
Caregiving is both scary and rewarding. Scary, because you never know from day to day what will be required of you. Caring for another person is a big responsibility. You want to do everything right; your worst fear is that you’ll make a mistake and add to their pain. Rewarding, because there’s nothing like the feeling you get when you’ve been able to ease a loved one’s pain. Having them smile at you and say “I feel so much better!” is an incredibly joyful experience.
The stress of caregiving can take a terrible emotional and physical toll on the caregiver. Depression, heart disease, hypertension, and Type II Diabetes are just a few of the many conditions common among primary caregivers. These conditions can be life threatening if left unchecked. At Don’t Lose Heart we want to make sure you’re aware of the hazards, the precautions, and the options open to you. We hope you’ll take the time to read some of the information and caregiver stories here.
WE’RE HERE FOR YOU
Sometimes just knowing that others have experienced the same nightmares, doubts, fears, and “selfish” thoughts and resentments can lighten the load a bit. Use the comment boxes at the bottom of each page to let us know what you’re going through. Before long you’ll have an answering comment from compassionate people who want only to encourage and comfort you, and when appropriate, to offer the wisdom of their own experience. We hope you’ll feel at home and learn from our mistakes, and that you’ll realize you aren’t alone in what you’re experiencing. And we hope you’ll come away feeling lighter and more sure of yourself in your role as a caregiver.
Be well, and don’t lose heart.
Guidelines: Everyone is welcome and encouraged to write here. All we ask is that comments be relevant to caregiving or the current thread topic, to keep the exchanges focused and helpful. Because of the high volume of spam comments we receive, your comments will not show up immediately, but usually within an hour. We implemented these guidelines to keep you, dear readers, safe and comfortable. Thank you for your understanding.
November is National Family Caregivers Month. Here’s to every one of you who love enough to be a caregiver; you are all heroes. ~ Jean
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Rite back @ ya Jean!
“I shall not pass this way again: Then let me now relieve some pain, Remove some barrier from the road, Or brighten some one’s heavy load.”
- Eva Rose Park
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Beautiful quote… Glad to learn that November has been dedicated to caregivers and that there is recognition for those who are dedicated and provide support each and everyday to a family member or dear friend.
Joyce
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Had NO idea they have designated a month! Thanks for raising the awareness:)
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I’m one, thanks, you are too…
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Hey all!
I know were very used to showing up here and hearing the struggles of our companions here on DLH. I don’t know if I’ve shared this yet, but mom was at the local gym last month looking for work. The owner also owns the coffee shop I used to play at all the time, he asked how I as doing and what I was doing for excersise. After teling him, he shook his head and told mom that I have a complmentary membership at the gym. that was a month ago last thursday. I’m now 168lbs, and HAPPY to take my shirt off at the pool for laps and the hot tub. I’m not buff man or anything but for the first time in my entire life, Im toned and healthy. God is good people! Keep your head up my fellow warriors!
nat
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Hi Nat,
Good to know there are other types of “caregivers” out there. The gym/coffee shop owner certainly is one of them. So thoughtful of him to think of you, and grant such a wonderful gift, it’s the gift that keeps on giving!
Stay strong Nat, and my best to your mom, Vida.
~Char
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Thank Char,
I’ll be sure to tell him tommorow when I go to work out….it’s still funny useing those two words in that fashion….I’m getting addicted for sure, the week before last I went 5 days in a row. If not for the hospital stay last week, would’ve done it again too. I’m feeling amazing and I’m actually getting work in with my music.
Thanks to EVERYONE here for the support you’ve given mom and I. We wouldn’t be where we are without YOUR words of encouragement and comfort. Thanks again DLH
GOD BLESS YOU ALL!!!!!
NFL
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See Nat run. Go, Nat, go!
~ Jean
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I think it would be great to see a memorial page for your father, and twice as nice to read your full story. There are caregivers that can learn from your story, and will find your sense of humor refreshing.
As for posting links, relevancy is key. Give the story idea a go, or think about it, we’ll wait!
~Char
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Nat, my dear, in our guidelines above, you’ll see that we ask that comments be relevant to caregiving or the page topic. Especially on the Welcome page, where new people come for the first time: what they read will affect how they view our goals and intentions here. We are here to offer support for people in caregiver crisis, so the first comments on this page should always relate to caregiving. That’s why comment threads about other things are left up for a few days and then taken down or moved.
Now, if you want to create an In Memoriam page for your father, which I think would be nice, you can post any links to your tattoo you like, because that would be relevant to that page. Or if you and your mother Vida want to create a page with your story, same thing – it will be about you and so anything you choose to post will be relevant to that page.
“Those are my principles, and if you don’t like them… well, I have others.” ~ Groucho Marx
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Was honestly trying to make light of it…..I apologize.
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NFL!!!! I LOVE it!! Nat, people who tolerate dialysis as well as you seem to are DEFINITELY fierce! You got it going Bro!
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Lynn and Char,thank you both so v ery much!!! I got some news…..I got my cardio clearance yesteday, the transplant center saud they got the clearance and as of today I’M BACK ON THE TRANSPLANT LIST!!!!! YAY COOL STUFF!!!
thanks for being such a positive force in mine and mom’s lives!!!
be fierce dlh!!
nat
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Nat, that is fantastic, I’m so glad to hear it! Please keep us informed as things progress…
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NFL,
That is the best news, and very cool stuff indeed. The positive fierce force field bounces back to you and Vida.
~Char
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Great news Nat!!!! Keep us posted!
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Way good stuff is right NFL, great news!
Karen
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Fierce Nat, that is so incredibly awesome that you are back on the transplant list. It is a more than comforting thought to be on that list as we well know-my boyfriend Dan is on the liver transplant waiting list. Your fierce determination and attitude makes all of the difference in the world. Keep on staying strong. You are a shining example of how we all can and should be. With love, Melisa.
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Well “NFL” the shoe seems to fit. Sounds like you are feeling and doing well, and that my DLH FF..”Fierce Friend”..is what it is all about
~Char
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Sorry I’ve been a ghost DLH. Bouncing back pretty good. I actually went to the gym yesterday and today, I plan to go tommorow and Sunday and then take a day off. I’m down to 159 lbs. Im plenty sore tonight…but it’s a good sore. DLH I won’t be gone so long anymore. I hope everyone is making it work.
Be strong
nat
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Hey Nat,
We are pretty casual round here, so no need to apologize for not posting. We are like the mail delivery service, rain, shine, good times and bad. Come by and visit and post when time allows,sounds like you have a busy schedule going on. Good for you.. Thanks for the inspiration gotta go jump/walk on the treadmill… Be strong rite back @ ya and all the best to Vida too!
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Vida!! How is Nat doing?!! I will admit I was an ESRD/diaylsis educator and renal social worker in my ‘previous life’ so he has been on my mind:)
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Hi, Vida. Since I first read your story, I have held you and Nat in thought and prayer. I lived in the Flagstaff and Winslow area for a short time, while attending NAU. I hope all is well and please know that good wishes are with you. Suzanne
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No word, Vida. Hoping all is well.
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Hi Vida, I know, I have too. Waiting to hear as well. Say hi to Nat for me.
Karen
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“My wish isn’t to mean everything to everyone but something to someone.”
Unknown Author
Going out to those in need, and wishing them well
~Char
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Hi Angelina, I will pray for little Muhammed and his parents. I am with you also in your sentiments on miracles and the power of prayer. Let us know if you could when his next surgery is scheduled for too. Karen
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Dear Angelina,
I just read your comment today, but rest assured that precious child and his parents will definitely be prayed for here, and I hope you will all receive good news soon. God bless you all.
Love,
Vida
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Hi Vida!!
Have wondered how you and Nat have been doing?! Hope you are well and he is up, out, and about. I am keeping my fingers crossed for him to be placed on the transplant list again.
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Dear Angelina,
I know how frighten and scared you all must be, the feeling that no matter what anyone says, nothing will take that lump in your throat or pit in your stomach away. But…although their conditions are not the same, my amazing thirty four old nephew Brett, endured two neurosurgerys before he was 2 weeks old. Please know my thoughts and prayers will be with you all today and in the days and weeks to come.
“What wings are to a bird, and sails to a ship, so is prayer to the soul. ”
— Corrie Ten Boom
~Char
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Thank you Char, your prayers mean so much to me. I will keep you posted as to how this next surgery turns out. The quote by Corrie Ten Boom is awesome.
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Char, I love this quote you posted, have shared it with others all ready.
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Hello from Winslow,
Nat was in the hospital in Flagstaff again from Sunday night until Tuesday afternoon. Drs. say he will be OK, and we were grateful as Dan sang us all the way home.
Jean, you are such a strong woman and I know Dan must be so proud of you. Thank you for sharing and caring about us all. We have come to love and appreciate you through this site, and I hope you realize how many people you have helped, touched, and encouraged. You are amazing, and I’m so glad Dan found his soul mate in you.
With Love from Nat and Vida
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Vida, I had noticed you and Nat had not posted for a while. I am so sorry about Nat:(
This did not sound like a routine renal surgery; hope he is feeling better. Strength to you and best wishes to him!
Please let us know!!
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Vida, Nat, I won’t even ask, because any nighttime trip to the hospital is scary. I know you’re both glad to be home and still recovering from the emotional and physical stress. Be well, rest up. Then come back and let us know if Nat is on the transplant list yet. Vida, thanks for the sweet words – I’ve had a lot on my plate in the last two weeks so they are appreciated. I always find that when I’m feeling my weakest, some friend comes along and tells me how strong I am. And it helps, every time. I don’t know why it works, but it does. It’s like when someone tells you how pretty you look, when you’re feeling anything but. That little part of you that wants to believe them gives the insecure part of you a shove and says, “Step aside! I’m coming through!” I love that scene in Annie Hall, when she’s bemoaning how terrible she was, singing in the nightclub. It takes about 2 minutes of Alvy telling her how great she was, and then she’s saying, “Yeah? And you know, I never even took voice lessons!” It’s so important to have a flexible ego. I wonder if there are any “Yoga For Egos” classes out there? :-}
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Dear Nat and Vida, so glad to hear the doctors reported good news by the time Nat was able to come home. My thoughts and prayers are with you guys. You both have such bright spirits and your positive outlooks will see you through this and Nat will be healthy all the way someday soon. Big hugs to you both, Karen
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Karen,
How are you doing? I used to enjoy your postings, but haven’t read anything recently. Hope your mom and family are doing well these holidays.
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Wow what a good idea you have (this website). My life’s been turned upside down…I know that’s a cliche but it that’s what I feel like. I’m moving across the states to be with someone I love, who asked me to help her. And asking for help doesn’t come easy for her. I’m driving a big ‘ole klunker car with all my stuff, and my beloved cat, from WI to TX right down through the middle of Illinois. Doing the mapquest thing I saw that Peoria would be a very easy side tri’ so I am going to visit Dan’s memorial. In taking care of my friend, Dan’s memorial will take care of me, as your site has helped ‘take care’ of me & others. I really believe life is a web. Wherever you are Dan, thank you for coming to this earth and sharing your soul through your music and art. And thank you Jean!!!
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Safe travels, Beth. You are a kind soul to just pick up and go to help a friend in need. That’s what love is all about. WI to TX is quite a drive. Hope your car and kitty are up for the challenge.
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Beth, thinking about you tonight, hoping your trip was a good one and that you and kitty are all settled in.
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My dad left us in Febuary and 8/10/11 was his birthday. I’m doing OK with that and thank you all for being here.
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Hope you did something special for yourself on the 10th Mike.
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Thoughts and prayers to Jean on Dan’s birthday.
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Thanks for the good thoughts and messages everyone, I made it through another of those milestones. Birthdays are as bad as Christmas, it seems. Miss the little celebrations, but so grateful he was born and that I was lucky enough to be a part of his life.
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Definitely Jean and we his fans are so grateful he had you, his perfect complement.
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Jean, I remember my first Christmas without my kids. They went to Michigan with their dad and I went to Texas to visit my Mom and brothers’ families. My husband (now ex) and I were separated at that time. I must have cried for two hours before I fell asleep. I missed them so much. I believe Dan would want nothing more than for you to be happy – not sad. He, I am sure is so grateful that you were born and that he was lucky enough to be a part of your life. His face on your Christmas 2003 photo has got to be the face of the happiest man I’ve ever seen, hands down. Sorry to hear how hard those milestones have been for you. You both were blessed to have each other and I hope and pray future birthdays and holidays will be happy for you. Just one of his fans saying “thank You” for all the joy you brought to his life.
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Dear sweet Jean, on my birthday I had a candle for Dan as we both we born on Aug. 13th. While I was enjoying my birthday, I thought of you, and then I said, “Dan, You sure were lucky to have Jean. Happy Birthday my Friend.” Needless to say, some tears were shed.
Love you my friend.
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Thank you, Jean, and all who participate in the DLH website conversations, blogs and posts. Over the past year and a half, I have provided the website information to many friends in need of caregiver guidance and help. You have done so much research and provided information and links to other, more detailed information about an incredible number of topics. Jean, your efforts in honor and memory of your husband, and to help others, are so appreciated. I am happy to hear you say that your pain now goes less deep before hitting gratitude and hope that each day, week, month and year will get easier for you. There is no doubt that Dan’s spirit lives among us. May all of you be blessed with mundane (everyday and material) and supreme (spiritual) riches. Namaste
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Thanks, Suzanne, for your nice comments and for referring us to your caregiver friends in need of a community such as ours.
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Jean, your strength of character, hard work, openness in sharing your life and circumstances, and oh my gosh, your beautiful and tender poetry–about Dan and your mother–are just some of what is an inspiration to me (and no doubt others). I am not currently in a caregiving role, although I have been in the past. I have learned so much by reading the DLH website and various linked websites and information. When my time for being a caregiver once again comes, knowing I can turn to this resource will be a comfort and support. The knowledge I have gained will help me to do a better job of giving care to others as well as taking good care of myself in the process. Just as blessed as you were to have shared life with Dan, so was he blessed to have found his soul mate and spend the last years of his life on Earth with you. You are loved and held in prayer, with thankfulness, every day.
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I wanted to let you know that I stumbled across this website and have passed it on to all my email contacts. I am not a caregiver or grieving the loss of a loved one. I can and will be keeping up with the postings and be praying for all who post here. Know that you have one more person who cares for you guys and will be talking to the Lord about your needs. Glad that a place like this exists to bring hope and consolation to any and all who are hurting.
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Angelina, thank you for your prayers, for passing our link along, and for writing to us here. I wish you many many many many years of healthy loved ones.
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Thank you, Jean. Seems like I don’t have much to offer anyone except love and prayers. I have bipolar-schizoaffective disorder and can relate a bit to health issues and the needs of caregivers as I used to be a social worker. My empathy is off the charts. Not bragging, just that I care deeply for people. God’s abundant blessings to all who post here.
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Angelina,
Right back at you, many blessings coming your way, we all need hugs and encouragement, don’t we! Thank you for posting.
~Char
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I’m listening to sometimes a song and realize why dan loved this woman so much; such a compassionate, caring and empathatic soul. love you, jean.
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Thank you, Mike, I hope you’re feeling a little better than you were a few weeks ago and that all the words of encouragement here helped. Grieving is a long slow process: two steps forward, one step back – a slow way to move forward for sure, and sometimes it feels like we’ll never get there. The important thing is that we’re still on our feet.
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Well, turns out I’m still on “hold” on the transplant list. My cardio clearance wasn’t sent to the trasplant center like we thought. I hopefully handled everything I needed to today. So we’re ALMOST back on the list. THANKS YA’LL FOR THE NICE WORDS!!!
NAT
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Hi Nat, sounds like you got things back in order but keep us posted. In the meantime, hope you and mom Vida are enjoying your summer and doing some fun things. Positive thoughts and prayers continue to head your way! Big hugs, Karen
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Nat,
This just reinforces my thoughts on always having to double check with the medical community, as we all can make mistakes. Thank God you and your mom are on top of things. We will be here on the sidelines cheering for you as “Team Nat” moves toward
the goal line, home plate, etc.
~Char
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Nat, you are a courageous, exceptional human being as is your Mom. Sign me up on “Team Nat”. Your team is right there beside you and we are going to win this game.
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Stay on top of it, Nat, and we’ll keep our fingers crossed…
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Ya’ll are just too darn cool!
Nat
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