When a Caregiver's Biggest Pain Isn't the Care Receiver

Last updated: September 05, 2011
2 : :rage:

"I Don't Know How She Does It" is the title of a new movie out later this month. It's about a working mom, but the line is an even better descriptor of caregivers, don't you think? Most caregivers (the "she's and "he's alike) juggle just as much, or more. And of all that a caregiver puts up with, sometimes the biggest stressor is an unexpected one: relationships with relatives.

I've been hearing frustrations galore lately about how it's not the care receiver, but another family member, who's driving caregivers nuts. Recognize any of these types in your life?

  • The long-distance second-guesser

A new report on long-distance caregivers says they're often more anxious, guilt-ridden, and disconnected than local caregivers, who can see what's happening with loved ones gradually. As a result, say researchers in the May, 2011 Oncology Nursing Forum, long-distance caregivers tend to swoop in periodically to try to deal with many issues at once, often second-guessing or undoing what local relatives have already addressed.

The point of the report was that long-distance caregivers (known as "seagulls" or "pigeons" for the way they fly in) have their own unique stress points. True enough. But they can spread chaos (or should I say, in some cases, "droppings"?) for the hands-on local caregiver.

  • The tightwad.

A friend's mother has cash on hand that she's been saving for a rainy day. "My dad is dying of congestive heart failure and keeps us up all night. So it's not raining, it's pouring," he says. "But Mother doesn't want to pay for extra nursing care because she hates to spend the money!"

Financial disagreements are high on anybody's stress list, but those concerning a loved one's care seem especially fraught -- especially if you're sharing in the care but don't hold the purse strings.

  • The conspiracy theorist / wild-hare theorist.

It's hard enough having to deal with a loved one whose dementia comes in the form of delusions and hallucinations. But it's twice as maddening when another relative is also spinning crazy theories that eat up your time and your patience: "The doctors don't want him to get better or they'll lose a client!" "She wouldn't prescribe a generic because she's in cahoots with the drug company!" Get Mom to eat this sprout-maple-syrup-alphabet soup; I heard it will cure her dementia!"

  • The drug addict.

Any hospice nurse will tell you about relatives who try to score the morphine or tranquilizers prescribed for a dying relative. Talk about an extra unnecessary stress!

  • The know-it-all do-nothing.

Then there's everybody's (least) favorite relative, the one whose idea of "helping" is to drop by for tea and criticism -- without actually lifting a finger.

How to deal:

  • Don't let it get personal, even when it sounds personal. Steer conversations back to what's best for the person in your care. Make like a duck and let criticisms roll off your back.
  • Try the communication offense: The researchers on long-distance caregivers, for example, said that keeping relatives in the loop with more information rather than less helps ease their stress.
  • Fight back with facts. Don't get emotional; just keep reciting what you know is in the care receiver's best interests. Enlist a neutral third party's authority: "Dr. So and So says"¦."
  • See if you can re-channel that negative energy into efforts that actually help you. For example, let a long-distance caregiver know about a specific financial contribution that would help, or give him or her a project to research, such as information about a new therapy. Sometimes people meddle because it makes them feel like they're contributing.
  • Keep your vents open. Sometimes you can't really do anything about these stressmakers. But you can -- and must -- protect your own sanity by off-loading frustrations to others. Share your exasperation with friends, online forum buddies, a therapist -- anyone but the care receiver.
  • Poke fun. At least behind their backs. Because it's a biological fact that laughter eases stress, and you need all the de-stressors you can find.
  • Repeat after me: "I don't know how I do it!" But you do. Thank goodness.

Who's on your exasperation list -- and have you found a successful way to cope?

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21 Comments So Far. Add Your Wisdom.

over 1 year ago

Here's some input many may not agree with; Last month when my mom was reaching the end and I had lost all patience with my less-than-helpful brother, I called him and let go! I gave him such a chewing out that he said if I had been a man, he would punch me! I laid on every guilt trip I could think of, I called him names, I cussed and vented every bit of frustration over the past 7 years of taking care of our mom without any help from him. She had been hospitalized for 8 months and he had not come to see her one time and he only lives 30 miles away. The result? He came, madder than a wet hen, spent an hour with her by himself and she passed away the next morning. He made his peace, just in time. So I don't feel the least bit guilty for blasting him.

Anonymous said over 1 year ago

For those who have made the commitment to a parent or loved one to care for them and be with them at home or assisted living at end of life, please consider your local hospice. My experience with hospice was wonderful. You have available to you : Nursing, social work and religious guidence ( if you wish). I have 5 other siblings who were unavailable for support and guidance. The hospice team taught me many things, including how to "let go" of what my perceptions of "family" should be and guided me to the ultimate goal of my loved ones wishes, to be comfortable , not hospitalized or institutionalized at death. I am so thankful for hospice professional care and professional guidance.

almost 2 years ago

My 78 yr old sister is in early stages dementia, she has lived with us for 4 yrs, I had to move her in with us 2 years after her husband died. Her and her husband raised me since I was 14, they had no children and both retired from the military. I am having so much trouble with my 76 year old sister and 55 year old brother, I now refuse to let them come into my home,they both live out of town and make it a point to now drive 10 hours at least once a month to pick her up and take her out, which is fine, but when she comes back home I am accused of everything. I know that she is giving them money and has set up an account for him and a savings for his grandchildren, who my sister has never met. I am not suppose to know about any of this but I do. She once gave a woman that worked at the bank, that she met after her husband died, she gave her a lot of money and when I had to go and get my sister, she told me what she had done 2 yrs earlier and I had to approach this lady to get my sisters money back. None of my family ever went to visit her until she came to live with me and it became convenient then. I am worn out emotionally, had to go for counseling, have asked my sister to go and live with one of them and she ignores me, I am about ready to pack her things and move her out, I love her but these siblings are making my life miserable. I had to quit work at the hospital to stay home with her, I had to leave a career that I love and financially it has been very difficult for my husband and myself and I had just signed up to complete my BS degree when I had to go an get my sister. She refuses to see the neurologist that the Dr wanted her to see and told me that she would get a lawyer if I tried to make her go see the neurologist. I am getting desperate now, my husband has been so patient with this situation, we have actually put our house for sale so we can move further away from them..any suggestions..I always told my brother in law that I would take care of him or my sister if the need ever did arise,,my sister can be mean and she lies to me so much..I am at my wits end,,we use to be so very close, she was like a mother to me, she is 15 yrs older than I am...and there were 11 children in our family, she was the oldest girl and I was the youngest girl..don't know what to do...

about 2 years ago

I cannot believe how my husbands family is reacting..he is pallative with pancreatic cancer....I have been married to their father for twenty five years.they are my step children and are ignoring the fact their Dad is ill..no calls in re: do you need anything..any help....do they bring anything over..nope..so finally I have accepted this and am doing the care giving on my own..I have hired someone to help w/ housework..but this is eating at me...At the end..I do not want to act out if you know what I mean..Does anyone have a suggestion..thank you Romany

over 2 years ago

My siblings are not very involved. My brother and his wife do no accept calls from my parent's number. My sister manipulates for money and does as little as possible. I feel like they left me for dead. My brother has sick inlaws living in his house( my parent's own this home) They have strong feelings of entitlement. If my parents had to move in a nursing home, they would have to sell everything and have much of nothing to live on. My siblings would be out of doors and they do not want to do any chores. Siblings can be very selfish. I say in times of trouble people do not change. They act like themselves and maybe you never noticed. It is bad to think that your siblings side with their wives who say do not get involved. You are not an only child. They may think"let her do it". They feel like they are owed a lifestyle or living. They do not have enough character to see about a parent. I take online classes. I am going to get someone to clean my house and take my son on outings in the summer. We will get a life. You may need some type of alternate. Maybe the local area on aging can help you. You do need a change of scenery to keep going. You need a lift and an outlet. I am getting henna for my eyebrows, I hennaed my hair(no more grey), I think that you are the only one there. Bless you. It will get better

Anonymous said over 2 years ago

My brothers do not come by (2 live near by and 1 lives out of state, so I won't count him), but the ones near by do not come by nor do they call. I used to be angry and I think a part of me still is, but i know there is nothing i can do or say that will make them change. No one calls to ask if my mom is ok. No one asks if I am ok. No one asks if we need help with bills or if we need food, etc. i quit working to take care of my mom, and do not have income except for what my gets from her social security, but that directly to bills and we are swamped with bills (she has been in and out of the hospital 5 times since october)...no one came to see her either. I am not understanding because they have time for their lives and they go here and there and do this and that. I go absolutely nowhere except to doctor's appts for my mom. i was going to school part time in the evenings and could not get out of it, or i would have to pay money back to the school, so i changed them to online. It has been extremely overwhelming, but i am managing. i could go on and on...bottom line...i don't get it. are my brothers afraid? do they just not care? they care enough about their in laws...why not their mother? i guess they figure that i am here, so i will take care of things( and i do, but that's not the point). I thought families were supposed to be there for each other. maybe just not mine. Thanks for letting me vent. Like i said,...this is just one thing...i could go on and on. I am afraid one day i am going to have meltdown or heart attack...this is now my new communication with the outside world. thank you for listening. may God take care of each and everyone who takes care of a loved one. And just in case no one has told you...YOU ARE AWESOME AND IMPORTANT. YOU ARE GOD'S GIFT TO NOT ONLY THE LOVED ONE YOU TAKE CARE OF, BUT TO EVERYONE YOU COME IN CONTACT WITH. THANK YOU!!!

almost 3 years ago

Wow, so much company...I feel better already. I have all of these in my life. Except I think in all honesty that I used to be the Seagull and got swooped into the caregiving! But that's ok, I love my mother, but between the siblings and Mami's sisters.....I thought I had the weirdest of families....and my sister is so bad about this that she's has cut me off from her children...she knew I loved them, and they were my weak point. Ah, they will not lift a finger, but will visit the nursing home, full of complaints and upsetting the staff that I get to work with the rest of the time. The upside???The staff now feels so sorry for me that they will do anything to help me. I in turn help them as much as possible. AND I PRAY....all the time. That part of the Lord's Prayer....Thy Will be done. The lady who can't get help from her brother...there are people in the community who will help you. She really needs to stop spinning her wheels in that direction. It is obviously destroying her. She needs to realize that her brother is not the same person she thinks he is or that she grew up with. It's okay to love your brother, but the love part is too one sided. He has an attitude like my brother. If I call and he answers he will first tell me that if it's bad news he doesn''t want to hear it. Well now he hears no news. That phone rings both ways. When I realized that I could not depend on my siblings, I grew up. Yes, Mami is in a nursing home, but I go every day, plus sometimes twice a day. They are not the best alternative, but they are not all bad. You can remain deeply committed to your loved one and still has professional assistance. If she does not take care of herself, we all know what her brother will do which is place Momma in a nursing home. Wouldn't it be better to place her there herself and monitor the situation? You can always take her out. I feel so bad for Home Caregiver. Been there done that. Best wishes.

about 3 years ago

Hi Anonymous - I would consider your family members to be the seagulls, or a combination seagull/ostrich.... Continue to do what you do, as you know what's best for your parents. Get used to saying something like - 'Thank you for your input, I will share it with the Dr.' or 'Could you come to the next appointment with me it is on Wednesday, month day at time, the Dr. would appreciate your input'. You'll see them pull out of the driveway so fast mouthing excuses your head will spin.

Anonymous said about 3 years ago

this article at least gave me a laugh.. Thank you I have to deal with all of these except maybe the drug addict. My big problem for the drug related is "some" think I am drugging my parents too much! I follow the Dr's orders, but I have been told "if I did not lie to the Dr. then he would not prescribe all of them!" I have to remember these complaints are coming from relatives with their "drive by diagnosis". That is similar to the "The long-distance second-guesser" only they live very near.

about 3 years ago

Dear Paula, I read you advice but I need specific advice and I hope you can help. My brother will sometimes give me advice but it is usually in response to my trying to make him understand that I need his help. He has refused to help in any constructive way. The unrealistic comments I can ignore but the bottom line is that if he would take over caregiving for even a couple of weeks a year it would make all of this so much more doable. Mom has lived with me now for more than eleven years. She is in late stage Alz. During these years as you know things have been getting harder and harder but he has never even taken our mother for a day. He is a teacher so he has many weeks a year vacation. His wife is an RN. It is true that my mother and I were not happy that he married her because she came from a very different background where family was not an important thing, but they have been married for over thirty five years and after the marriage we tried very hard to keep the family intact. They almost immediately moved two hours away and when their only child was born they really hardly ever let my mother and I have the pleasure of enjoying my mothers only grandchild and my only niece. My niece is married now and we have a loving but distant relationship with her. Over the years when I have asked him for help the answer is always no. He never gave a reason until lately when he has said more than once " because I do not have to" These insensitive remarks are really not surprising considering early on he once told me "what else do you have to do" I too have been a teacher and loved my job but had to take early retirement a few years ago because the caregiving needs required it. Early on I blamed my sister-inlaw for the situation but my friends helped me understand that my bother was mostly responsible. My bother rarely calls my mother and when he does He expects me to not talk about anything that will upset him. When I try to explain the difficulties and how mom is failing he says I never have anything good to say. It always ends in a fight and as I've said he does not feel any responsibility. The last few times we've argued he has told me to put her in a nursing home. Now you may say this is reasonable, I have heard it from my friends and even my internist (not in a direct way) but my brother and everyone knows that I want to take care of my mother until she dies. She still has some but diminished quality of life and it is an ethically decision. I feel that we should take care of our elderly and with his help everything would be easier not only physically but emotionally. I've tried the reverse trick that you mentioned many times but it has never worked. I do send Mom to daycare 2or3 times a week but although it helps its not enough. My Mother is a WWII Purple Heart widow, so she gets my fathers pension and that puts her $55 over the income amount that would entitle her to Medicaid. Therefore she doesn"t qualify for all the help that would bring. My parent never owned a house they rented so there are no other assets to tap. When I take a vacation for 2 or 3 weeks a year I private pay for the respite. The cost for a good nursing home costs me between $325-350 a day. I know I am going on and on but the bottom line is how do I stop the anger and hurt I feel towards my brother. I try to just not think of it and it works for a while but it is right there under the surface. I have tried to have him meet me alone to talk somewhere equidistant from our homes but he always says no or just blows up and refuses to talk with me because I "always have a problem" Any professional advise or thoughts you can give me Paula I would appreciate. Please help. Thank you.

Anonymous said about 3 years ago

My brothers fit all categories. They can come up with more things for me to deal with than my mother. It amazes me the absurd things they can come up with or say. It's like they are needy children and I don't have time for that.

about 3 years ago

Forgot to mention - the movie 'Hanging Up' is a great movie for caregivers to watch - deals with all of the types in this article, and the ostrich as well.

about 3 years ago

I just love this article. Can't wait to see the movie mentioned in the title, looked at the website - great actors, and sounds like a great movie. The descriptions are great in this article - very helpful. I have one seagull - complete with swooping and 'droppings'. Another seagull that flies overhead so far that they can't see and the 'droppings' don't hit, if they even drop... I have an ostrich as well, which the article doesn't mention. Hard to deal the all of them and keep myself sane and clean.

Anonymous said about 3 years ago

I have a family member in each category. Thanks for the tips!

Anonymous said about 3 years ago

I have a family member in each of those categories! Thanks for the tips !

Anonymous said about 3 years ago

Am going through all this now, as well as trying to raise my own family!!! The siblings have had little to do with hands-on caregiving for three years, but then swoop in with all kinds of unsolicited advice and information to cause frequent chaos and frustration. They even second-guess doctors' advice. I am tired of trying to do so much for their parents, only to have siblings make a phone call to confuse, undermine and reverse any decisions that have finally been made. I am ready to step aside, but am afraid that if I do things will not get done as they should. The decision of assisted living vs. home health care is one of these issues that everyone seems to have advice about and cannot agree. Thank goodness for my wonderful husband who is my soundingboard and strong shoulder to cry on!!

about 3 years ago

Yes I do agree that us "seagulls" do tend to have a big guilt complex at times, but when you have been and are still nursing a husband who exhibits many aspects of dementia - and has done for many years, and have coped alone as I have, then when a parent goes into decline and siblings run around like headless chickens trying and failing to do their best, my best coping stategies offered are looked down upon by the main carer. I find that all the siblings including the main carer all decide to take off on holiday together, I am left to cope not only with my husband but travel many miles leaving him alone to look after a mother. I then have a double dose of guilt, what to do? Who needs the greatest care?

about 3 years ago

For the 'know-it-all do-nothing', turn it around on them. Play dumb, like their 'wisdom' is an offer to volunteer. "Oh, wow, thanks so much for your help! Those are some great suggestions! You know what?... I'll take you up on that! You can stay with Mom a couple hours this Friday so I can go to a doctor appointment! That will give me some much-needed help - thanks SO much! It will also be the perfect opportunity for you to put some of those ideas into action! You're a lifesaver! Boy, I didn't know what I was going to do about Mom during that appointment until you volunteered! Thanks a million!" Then hope they either put up or shut up :) (Fortunately, my family and friends don't fall into the stress-givers categories. They are wonderful and help so much.) Worth a try???

about 3 years ago

Important insights and info with a wonderful sense of humor, Thanks Shahina Lakhani

about 3 years ago

THANK you for the ideas: I have a seagull in my life and your intro is SPOT ON! all she brings is stress and confusion and emotional disruption for my parent and me. i have seen the "let it roll off your back" advice before. Anyone got any self-psych tricks on how to actually DO that? My back is about to break under the pressure!

about 3 years ago

Tips on how to deal

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