Let's Talk

Last updated: September 26, 2011
Nose to nose

It was a classic case of miscommunication. My sister-in-law -- a.k.a. the mother of all caregivers, with six school-age kids and, at one time, three live-in elders -- was under strict orders to call me at any hour she felt the need, for any reason. Her mother was on home hospice when the text arrived: "Can you talk?"

Eager to help, I texted back, for speed's sake, a simple "Y."

And then...she didn't call!

I waited awhile before texting back again, "Are you okay?"

Actually she was all right, had just been wanting to update me, until she got my message -- and that had made her a little miffed and hurt. She'd mis-read my "Y" as the word "Why?" As in, I was asking her why she needed to talk to me right then, as if I were screening her level of need. (No, no, I quickly clarified. My "Y" meant "Yes!")

Fortunately, our communication is normally much smoother. (For one thing, I'm much better at spoken or written words than texted ones!)

Every caregiver needs a talking buddy. Talking allows you to offload stresses, large or small. Research shows that the simple act of giving voice to a concern, peeve, or issue takes its impact on your mind and body down a few notches. When you talk to someone else, you feel less alone. Sharing thoughts and feelings leaves you better equipped to manage them. Talk may be cheap, but it's also invaluable.

Do you talk to anyone?

  • A therapist? Talk therapy is a specific, therapeutic kind of communication, a lifesaving option for overwhelmed, isolated, and depressed caregivers. It can be difficult in some care situations to get out to weekly appointments, making newish online consultations an encouraging trend for caregivers.

  • Members of a support group? Fellow caregivers, especially those who are dealing with the same disease as you, know better than anyone what you're going through. Can't leave home easily? Have only odd hours free? Consider online support groups, such as Caring's Stage Groups for Alzheimer's caregivers or those for stroke victims.

  • Your spouse? Reading the comments on last week's Self Caring post, "Is Pat Robertson Right?"-- in which many caregivers wrote movingly of their devotion to their mates while discussing the meaning of "in sickness and in health" -- I was reminded of how especially painful it is when a spouse has Alzheimer's and you not only watch his or her physical decline but, as mental faculties are lost, you're also robbed of the confidante aspect of your relationship.

  • A friend? Caregivers sometimes try to spare their friends the truth of their stresses so as not to bore them or generate pity. Or they make the opposite mistake of depending too heavily on a single person who can't relate and then, overwhelmed, slips away. One solution is to maintain multiple social contacts as best you can -- your best friend, a relative, a digital penpal from your social networks.

Ultimately, it's not about whether you talk in person or by phone, use e-mail or a forum, pay for a professional's time, or let a buddy buy you a cup of tea. It's about having another human being with whom you can connect and give voice to the complicated emotions that can rise inside you. But -- equally important -- it's about having a healthy compassion for yourself and an instinct for self-preservation that emboldens you to truly take others up on it when they say, "I'm here when you need me,"

People are out there. Y indeed.

Who do you talk to?

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9 Comments So Far. Add Your Wisdom.

almost 2 years ago

Now I realize the importance of self caring because if we care better to ourselves then we can care others.

Anonymous said about 3 years ago

please pray for me. i amdoingfine, sometimes i don.t understrand, but i try to. sometimes i will hear we wil go for a walk then i will hear mu mother say later, when it os cool.i say ok. i ask what do you want to do. lets pray for oneanother. what d o you do when when you have people who you know that only comes by every four months, only becase rthey have to get something they need, and just brush you by. they know you are taking car of their love one. they say theuy are always busy. ..they know yoy are limted. and when you ask them to do someyhing for you they never do it for you, well tis is the caregiver speakibng. thanks forllisting.

about 3 years ago

Thank you for the caring support we have here by sharing what is on our hearts and minds. We are not alone. We have love for what we do for others. Love is a decision we make.

Anonymous said about 3 years ago

I have a sibling to talk to - long distance - there are two others. Our mom passed away February of this year, and we immediately had to assume care of our father who has Alzheimer's. We moved dad "back home" so he could be near the majority of family and be near me as I have become his caregiver and guardian - he is in assisted living. Dad is doing well, but there is still a great deal to manage with and for him on a daily basis. I have wonderful siblings, but I still feel angry and depressed. My brother has been traveling the country since June- a dream come true - and won't be back for another month or two. He lives locally, when he is home, and helps out if I ask him. My youngest sister who is single (20 years younger than me), has trained for and run a half-marathon in Chicago recently, continues to work out regularly, and lives 3 hrs away. She works full-time. My other sister lives in KS and works full-time. She is the one I usually "talk" to the most about how I'm feeling. I work full-time and have to work because I carry the insurance and my husband is self-employed and our income has been significantly affected by the current economy. A note my mother wrote years ago that we found in our ongoing effort to get the house in IN cleaned and ready to sell, left this sister feeling very hurt regarding the disposition of mom's rings. I already knew of this - though I did not know this note existed - because mom shared this particular information with me, my dad, and my youngest sister in the days prior to her death. I feel her hurt has come between us and I don't feel I can burden her with my feelings when she is dealing with her own - it broke my heart to see her pain when she learned of this. I struggle so much with my own grief and as the oldest sibling I am constantly stressed as I try to gently lead us all through the many tasks that have to be done and decided. I'm still settling my mother's estate - my dad can't do it - and getting dad to the place and current happy disposition he now enjoys was nothing less than brutal. My siblings have helped in many ways, and we have been in complete agreement every step of the way where dad's care has been concerned. We are truly blessed. Having said all this - I simply resent that everyone else's lives are going on normally, albeit we are all still grieving. The reality is that no one else has or wants the responsibility for dad that I have undertaken, though they are more than willing to support me - I'm just not sure what they think that means. I had been sending weekly updates about all I was doing with and for dad, making suggestions that would help him or would brighten his days. I've specifically asked that they write, email, call or visit him (even though I have to read and help him respond to written communication). I know how often this happens, because dad tells me everything and these things mean so much to him. I feel bad even writing this, but other than my sister in KS who truly makes every effort even from a distance, I feel abandoned. I feel acknowledged, but unappreciated as if I shouldn't expect anything because someone has to care for dad and it happens to be me, that I just have to accept my lot and not complain. I think because we are all settling into whatever new normal has become, and they feel I'm doing a great job, and dad's doing ok - they don't question how I'm doing. My husband knows how much I do, and knows what kind of help I get from my siblings, yet he has no idea how to deal with how I feel and avoids talking about the whole situation. I feel lonely, and alone. I feel depressed and angry. And I feel like a schmuk for complaining because I know they believe they are doing all they can do. They rarely ask me how I'm doing - I think because they don't want to hear what they already know. I typically get little to no response when I send email updates on how things are going. I know I can't make them help and that they have lives and limitations, I can only ask. But I also feel I shouldn't have to all the time. My youngest sibling, very early on, said "I didn't get the mommy gene." None of us, including me, is expected to be mother or wife to our father. I willingly and knowingly took on responsibility for his care, and because I'm the oldest and a nurse it was somewhat expected. In spite of all we HAVE done together, with the passage of time - dad and I are are blending into the background. So I guess I'm blowing off steam here because I really don't feel I have anyone to talk to honestly. I do have a life, but I can't do whatever I want, whenever I want, and they can. I don't have the time or desire to add another appointment or meeting to my schedule. Having a little bit of time to myself, or to enjoy with my husband or grandchildren is too precious to give up for that. So I guess this is my vent - I can do this as my time allows. I've found this website to be very helpful and I don't have to worry about making my siblings feel bad this way - which is the last thing I want. We need each other. Mom is gone, and we're losing dad to Alzheimer's.

about 3 years ago

Youngestsib, nothing you said offended or hurt my feelings. You put to words some of my thoughts and feelings. Why cant I take a few days off? Why cant I do something for myself? Yes I have at least once They dont understand I dont have a choice in most of my decissions. I have frusterated a few counselors. I am no Super Mom. I have responsibility for others, and am commited to the 24/7 care of my Mom and helping my husband adjust his new dxd. I really dont have any to talk to either. My sibs are either in different stages of denial or live too far away to be of much help. Not to mention a terminal Granddaughter. The house was transfered to my sibs, I didnt want anything to do with it. The sib's have said they wont sell for a year, I hope so. When my mom passes we will be homeless again but I would understand if they changed thier minds. We could all use the money that would come but hopefully it will be awhile. The brain is loseing the ability to get her legs moving, she is in a chair all the time now. She is like watching a 2yr old eat but she still has an appitite. She still isnt able to sit up to well these days. I have a really good book that has helped me, if you want I find the title? She is just shrinking away in front of me. One sister lives localy and tries to come out twice a week. Hopefully she will come tomorrow. I totaly agree about the pets. Mom had one, a chug. We have two chauauha's and a blue healer. They are deffinately entertaining. Here is my e-mail. and yes there is a little story about it....if you need to vent I will listen and maybe we will have already gone through some thing helpful to the other. Hope relating helps to see there are alot of us out there and have similar stories. karen

about 3 years ago

Hi to sexygmaa and stu, Sexygmaa/Karen, I'm going to try, with hopefully a lot of understanding and respect, give you a couple of comments! BTW, I'm Cathy, and live in north GA (although my temperament is Yankee from the Northeast). I don't think the nurse who flung that comment at me meant the same thing--it came across to me as if I was a failure all my life, just plodding along...but, she doesn't know me, but she will. I HAVEN'T done a lot in my life because of that lack of support as a kid--I didn't learn how to succeed in life, but for my who life, I tried to find the answers to WHY--and for me, when I know that, I can let it go and keep on going. My last post was when I WAS overwhelmed/and miserable/and that, for me turns into anger! I was dx'd as bipolar a few years ago--and there are occasions the mood goes into the trash--feeling better now, although the concerns don't go away! I have the feeling though, you've lived a life that's been damned hard, but with 3 sibs, 3 children, 5 grandkids, and a best friend hubby, I'm thinking if you started a "gratitude journal" (where each night, you JUST write 5 things you feel grateful for), and you look at all the connections you have to others, you might find some things to put in there! My Dad died 11 years ago, from complications from diabetes he had developed late in life, He was depressed, he had dementia but I couldn't , now, describe how bad it was--that was from a lifetime of drinking as what I call a hobby. That's where my brother's heading. My sister was chronically ill but had a marriage and two children and 6 grandchildren..she died about three years ago, her husband shortly after. What ANGERS ME, is that with all those relatives (and my brother has two kids and four g'kids)--none of THEM care to contact their grandmother/greatgrandmother! Stu, I have no idea how to make people care--that know--and don't care! I've tried! Nothing has worked. Our family, when I was growing up, passed on the old-fashioned values that are heritage-centered. Unfortunately, my brother didn't choose to pick them up--and none (of any values/morality) were passed on to the next generations! Try to find out the relationships between your Uncle and the others in the family, it may be easier to cope with. Hope that helps... Karen, being with your Mom must be devastating! How DO you handle that kind of devastating level of loss-- my mom is losing current memory, and gets confused, and is unstable on her feet, and I feel the loss every time I see one of those--with Dad, it was saying goodbye slowly, Mom was giving the most support. Now I'm seeing my LAST support leaving me. I've always had the love of my "puppies" (dogs) to keep me going through life--that has always been enough, caring what happens to them, to keep me from giving up! I have pretty strong views about what supportiveness pets can be! I guess it's going to be understanding the feelings step-by-step, and like you both probably do, take one thing at a time. But can I say, letting these feelings out with you does help! Hope I haven't said anything that hurts you-- Hey sexygmaa--who must have some positives there with a name like that!...what are you thinking lies in the future for you? I'm sitting here thinking sometimes it's wise to separate out a little, future after present. And not forget the past... Thanks for listening!

about 3 years ago

It made me realize that my need to talk about my stresses is normal. I just moved my Uncle in to skilled nursing and nobody in the family has helped, called or responded to my letter telling of his move. I am amazed that even his two sisters do not seem to care. They were mad when I "put him in assistive living" but no one cares to be there for him!!!

about 3 years ago

I am a "plodder". Sometimes plodding is what gets me through the day. No, when I am in that mode, I dont get things done but I just keep going. Plodding and a Prayer. I guess looking back over my life I have always been a caregiver. I am the oldest of 4 kids. Carried at least 2 on my hip and baby sitting at a young age. Became a CNA in 1971, married young and had 3 kids, now 38,36 and 23. 5 grandkids, three with disabilities so for the last 16 yrs I have been helping my daughter with the various problems she is dealing with as well as her health. In the past 7 years My granddaughter had a right Hemispherectomy (removal of the right side of her brain). I spent 6 weeks in the hospital, out of town, with her. When I came home I moved in with my parents because my dad was dying of brain cancer. My husband had a head injury that is now comming back to haunt him. And boy could I go on. Right now we are caregiving for my mom. Late Moderate AD. This has been the most stress I have ever had in my life. No I dont get the help from my siblings I would like but they do what they can. I've learned not to expect anything but be grateful when it comes. My husband and I are technicaly homeless and he has just been diagnosed bi-polar. Just keep plodding. I'm not happy with the job I do with her, wish I could do a better job, but it is all I can do. If we werent here she would be in a home. She deserves better than that. I just keep plodding. The nurses have told me to take time but I dont know how either. Never had the money or the time and I wouldnt know what a spa is. I love my mom but man she can be a stinker and there are days that......I dont have too many people to talk to either. My Husband is my best friend and my sounding board. He is here and is very helpful. I dont know where you are. I am in Nor Cal. My name is Karen and will listen to you vent if need be. Hang in there and keep plodding, it doesnt have to be a bad thing.

about 3 years ago

I am sitting here--it's before 11 a.m.-- I'm overwhelmed with frustration and anger. My brother doesn't care. Mom feels more helpless and at times realizes she's losing memory and health and clarity, and I have such a hard time being constantly supportive with her. Our history has been one where neither Mom nor Dad really showed support or love. I'm not going to abandon her. I am very afraid I will lose the house and everything else when she's gone, and I'm also afraid I am trying to keep her here when she might not want me to try so hard. I tried writing a few times on your suport forums, and no one answered. Yes,, it is very hard when you've never been taught self care--and you truly are alone with your feelings. A woman with a social work/nursing background who does medication management recently ended an appointment saying "so year after year you still keep on plodding along, plodding along". NOT TRUE! but it still hurts.

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