Caregiving resources for every stage of the disease.
RSS Feed Print
Caregiver Stress(2)
Veronica1948
Posted: Wednesday, February 7, 2018 5:25 AM
Joined: 6/29/2016
Posts: 8


My family tells me that my stress is NO different from their stress.  I have been taking care of our mother who will be 100 in May for 16 yrs.  With little to no help.  Whatever I say to my sisters they always come back to me belittling my situation to theirs.  I can hardly talk to them and then I feel so guilty and cut off from everyone.  Is our stress just stress like everyone else or is it different?
ruthmendez
Posted: Wednesday, February 7, 2018 5:56 AM
Joined: 9/8/2017
Posts: 757


caregiving stress not only affects you mentally but physically as well.

are your sisters' level of stress likely to cause them to hurt their backs? Probably not. That's just ONE example of the difference. I know this will be my last time caregiving. In ten years from now I won't be able to do what I can do now. Someday your sisters will realize the difference. In time, you'll see.


MPSunshine
Posted: Wednesday, February 7, 2018 5:58 AM
Joined: 5/21/2016
Posts: 1697


Your stress is different because there is very little support in our society for taking care of elders. It is not taken for granted as it is in many other cultures. Your sisters have no right to belittle you and it is very mean and selfish of them to do so, since your mom is their mom too. You must be a really awesome caregiver to be taking care of your mom so well that she will be 100.  Your stress is absolutely different. This is a good place to post because you will find others like you who are caring for their loved ones. 
feudman
Posted: Wednesday, February 7, 2018 6:53 AM
Joined: 6/5/2014
Posts: 1063


Caregiver stress is a reality and the statistics are sobering. Google it. My support group facilitator just told the group it can take an average of 7 years off our lives. 

Your sisters sound like narcissistic personality types. Dont let them add to your stress.


rosepoint
Posted: Wednesday, February 7, 2018 8:01 AM
Joined: 1/22/2014
Posts: 574


Caregiver stress is a very real thing! Sorry your family is so insensitive to what you are going through caring for your mom.  I have been officially diagnosed with caregiver stress by my doctor. Being a caregiver is also very isolating so please don't think you are doing anything to contribute to that dynamic in your family.  Our family hasn't helped and stayed far away until we announced hospice is on board and now they want to visit and offer to help.  For 5 years prior no help, no offers, no visits nothing and now when there is nothing to do but offer some comfort to our LO they show back up after the heavy lifting is done. 

 One family member is actually now showing remorse and guilt over dumping everything on us for the last 5 years.  In my opinion words are cheap and most likely the guilt is related to giving up on our LO years ago and now that time is lost to have any kind of relationship with our LO and they are realizing it too late.  Not my issue and I'm not going to entertain any more 'whoa is me' discussions with them when we've needed support for years.   So please no guilt.  You are doing the heavy lifting for your family.  Karma will catch up to them some day.


MissHer
Posted: Wednesday, February 7, 2018 8:08 AM
Joined: 11/13/2014
Posts: 1067


This job is very stressful and isolating. My siblings visited a few times in the last, almost 4 years,but that's it. So I don't even bother letting them know how mom is or myself. I don't need their phony support. Thankful I have my family and this board for support. So come here more often, we understand. hugs

Deb


kellly
Posted: Wednesday, February 7, 2018 8:26 AM
Joined: 6/12/2015
Posts: 1134


There is no Olympics of Suffering, except that your sisters seem bent on creating one. This is ridiculous. How can you compare one person's stress with another's? Everyone reacts to situations differently and experiences stress differently. What could send someone round the bend hardly fazes someone else. On most days, things might not bother a person but on a day when they're tired and crabby, look out. I don't know why your sisters are inclined to make a contest out of this except that they are looking for a way to not help you out and are trying to self-justify it.

If you're responsible for someone else's well-being and handling things poorly can cause life-threatening consequences, I'd say the stress level that goes along with all that responsibility is probably pretty high, particularly when dealing with emergency situations. If your sisters are a couple of powder puffs who stress out when their manicure gets damaged, then you have your answer. You don't have to appease them on top of everything else you are doing. If you cut them off, so be it. You don't need them belittling you and refusing to cooperate and step up and help out. If they want to stay in contact with you, the ball is in their park, and don't feel guilty or like you have to extend some kind of olive branch to them. If they want to maintain a cordial relationship with you, there's nothing stopping them from doing that but you certainly don't need to go around trying to appease them over something you're not responsible for in the first place. They don't want to help you and are looking for some way to opt out without admitting that they are being self-centered and unempathetic towards you and THEIR mom.


Twoevas
Posted: Wednesday, February 7, 2018 8:31 AM
Joined: 10/8/2017
Posts: 155


  I have had lots of different kinds of stress in my life, parenting, jobs, family issues etc 

None of those compare to the sadness and stress of caring for my mom with Alzheimer's. Caregiving is lonely, unpredictable, all encompassing, draining, and sad. There is no happy ending. No matter what we do for our loved one, they still get worse and eventually we lose them. This job is uniquely stressful bc it's tied up with so much grief and so much unpredictability. Yes it can be  rewarding and good memories can be made but it also very hard. As caregivers we put our life aside to care for another human being. No one really understands that unless they have done it. 

I have learned to only talk about it and get validation and support from the handful of people that understand and from this group which has been a lifeline. 

What you are doing is a very difficult labor of love for your mom. Don't let you family take away the value of it with their words. Most likely they are just rationalizing that it's not so bad so they can feel better about their choices


Little fish
Posted: Wednesday, February 7, 2018 8:33 AM
Joined: 2/7/2018
Posts: 1


No, it is absolutely different. When my dad passed, and l was alone in the house with my mom, l literally had a stress meltdown. I needed to go into the mental hospital. One time l even pushed her a little and once l shook her head until she said ouch!!
Veronica1948
Posted: Wednesday, February 7, 2018 8:36 AM
Joined: 6/29/2016
Posts: 8


Yes I have done the HEAVY lifting and now that mom turns 100 in 2 months and they know time is near they show up with smiles and smooches and bearing gifts.  They are like the absentee father who always shows up as santa clause and the mother is the bad guy.  Mom shows no concern for my health and treats me like I'm invisible but the moment they walk in she tells them they need to take care of themselves and she talks so different to them.  My heart breaks.  My sister has gotten on facebook and made it sound like I won't let her see mom now.  Mom was very sick and did not feel like company so my sister gets on facebook and makes the statement that she tried to come visit but I wouldn't let her.  YES I did tell her not to come.  Mom didn't feel up to company.  Why do it on facebook?  To take the guilt off her.  I can not hardly stand to talk to my family any more.  I do feel lonely but I have kept a lot of drama out of my life.  But who gets the blame that I am not treating my siblings right ME....forget that they don't call or come visit but every once in a blue moon and that they can call for 5 minutes and they have mom back in their corner and I am always pushed back in the corner.  I pray that I can finish.  At what cost I don't know.  I have decided to call a friend who is a counselor and also took care of his mom but I think he was an only child so not sure he will relate to my delimma.  Thank you all for listening.
eaglemom
Posted: Wednesday, February 7, 2018 8:49 AM
Joined: 3/7/2012
Posts: 2077


Your sisters are working under the premise that stress is stress period. That is very easy to do when you are not the one caregiving. No matter how you try to explain it to them, they won't get it. That is unless you step away from the role and one of them has to fill your caregiving role.

Obviously you try to explain it and they don't get it. In sixteen years if they've not gotten it by now they won't. You probably should just quite trying to talk to them about it. It's only affecting you at this point.

What would happen if you gave them a two weeks notice that on this certain date one of them will need to 'be with mom.' Do not call it caregiving, just that someone needs to 'be with mom' for 4 hours on a certain date. Do not explain yourself. During that time leave the house - get a massage, have your hair cut, get a mani - pedi, go to the library & read, meet friends for coffee or lunch etc. I know of several whom are in similar situations and when she finally reaches her breaking point so goes to a friends house and simply sleeps!! Of course the options are endless. And NO answering your cell phone during this "off" time, turn it off completely. That time is yours to do wish as you please.

After several days let them know again in a week another day, date & time you will not be available to care for mom. This time be gone longer. I'm certain this technique will not please your sisters. It will be difficult on you but after sixteen years I don't know how you've done it.

Your original question was about stress - everyone has stress. Its more how you personally and individually handle stress than the definition of stress itself that your asking about. Everyone handles it differently - but mentally and physically stress is a huge concern for caregivers, no matter their individual circumstances.

eagle


kellly
Posted: Wednesday, February 7, 2018 8:51 AM
Joined: 6/12/2015
Posts: 1134


Veronica, I think contacting your counselor friend was wise. Your sisters sound very self-centered and self-serving to me. Your mom has dementia, so don't take her fawning over them seriously. I know it's hurtful when you're doing everything for someone and yet they treat people who are practically strangers as if they are so special. Just remember, she is working with a damaged brain and is taking you for granted. If you walked out of the house and stayed away for a couple weeks, I'm sure she'd be super-glad to see you when you returned. 

There is a 24 x 7 free helpline you can call for advice, ideas, and support (800) 272-3900. It really doesn't sound to me like your sisters are doing you any favors, and posting about it on Facebook is just another way to self-justify their lack of day-to-day interest or involvement. You got it right when you said they are like the absentee father who buys extravagant gifts for his kids to "make up" for the fact that he only bothers to see them every few months. Next time they start trying to guilt you over something you might point out them that this is THEIR mother, too, but you are probably too nice a person to actually do that. A while ago, Dovdov posted something about uninvolved family members who barely lift a finger to help, but then offer all their "advice" to the person who's the real caregiver, and had a comment: "Shut up forever". It pretty much sums up the problems lots of families experience and the sentiment a lot of us share about having to deal with these absentee experts. Try not to feel guilty, hold to your course, and any time you want to vent, there are many people on these forums who understand and can relate. Your family might not be very understanding, but this community definitely understands.

{{{{hugs}}}}

P.S. I really like eagle's ideas, too. You totally deserve a break and it's a great suggestion to tell your sisters that they have to come stay with your mom. Good luck!


Sather56
Posted: Wednesday, February 7, 2018 9:27 AM
Joined: 5/30/2016
Posts: 487


Caregiver stress is very different. Even more so when the person you are caring for is a LO. Emotionally, it always plays in your mind that you hurt for them and what they are going through. It also hurts when family  "check out"of the situation, either because they deny what is happening or cannot face what you face daily. Physically, it affects your sleep, how you eat, if you eat, anxiety of what will happen next and what is happening now. Do not isolate yourself, but stay away from people who cannot support you.  Seek out if you can a support group who can allow you a chance to share how you are feeling. Maybe if, financially possible, get someone to stay with your LO for a few hours so you can get respite care for yourself.  Thinking of you and wishing you better days.
Unforgiven
Posted: Wednesday, February 7, 2018 10:06 AM
Joined: 1/28/2013
Posts: 2497


Golly Moses, of course our stress is different!  Because we are never off duty, no matter where we are and what we're doing.  Fast asleep, in the bathroom, trying to get the taxes done, responding to another domestic emergency like a toulet overflowing or a grandchild having a meltdown, or even meditating to control stress levels -- we always have to respond immediately.  It can't be put off to a more convenient time.  You never know what kind of challenge you might have to deal with, from "Honey, I just set my room on fire," to "Honey I just wanted to hear your voice."

It's like the stress a soldier experiences on a battle field.  War has bedn described as long periods of grinding boredom punctuated by short periods of pure, hellish chaos.  Soldiers get PTSD.  I think some caregivers do too.  

You can tell your sisters THAT.


Griffith1031
Posted: Wednesday, February 7, 2018 10:42 AM
Joined: 8/7/2017
Posts: 15


 I recently had a “friend” tell me that her life was so much harder than mine. And I am thinking IT’S NOT A COMPETITION!! You have no idea what I am going through every single day to make sure my mom is safe and happy. We should be offering each other support not belittling the others’ experience. Life is hard. Period. Until you have spent a day in my shoes shut up forever!

 


kellly
Posted: Wednesday, February 7, 2018 10:53 AM
Joined: 6/12/2015
Posts: 1134


Griffith1031, PERFECT!!!
Here again
Posted: Wednesday, February 7, 2018 10:54 AM
Joined: 1/22/2018
Posts: 115


I really don't have anything to add that the others haven't already said.  Care giving is very hard, and the stress is much different from the stress your sisters have.  Chances are you have the same stress they do and then the additional stress of being a care giver.

I like what Griffith posted.  "Until you have spent a day in my shoes shut up forever!"  I have said the very same thing.  Until a person has walked in the shoes of a care giver they really have no business voicing their opinion.


caregiving daughter
Posted: Wednesday, February 7, 2018 12:49 PM
Joined: 11/27/2012
Posts: 1845


Yep--the stress is huge and my mom is in mc. I would say though you have enough stress being a caregiver. You don't need to feel even more from family. They are adults. They have made their own decisions. Move on. Be open to a sibling that comes around and is willing to talk about the situation. For others, try to not to let them bother you and realize you cannot influence what they do. Can you find other ways to find respite. Talking to your friend is a great idea. If you hit a low point and that friend isn't available, jump on the board here or call the 1-800 number. I have done a number of times and the folks who have listened have helped me and my mom in so many ways.
Kenny Ray
Posted: Wednesday, February 7, 2018 10:29 PM
Joined: 11/5/2017
Posts: 126


Veronica1948 wrote:
 I pray that I can finish.  At what cost I don't know.  I have decided to call a friend who is a counselor and also took care of his mom but I think he was an only child so not sure he will relate to my delimma.  Thank you all for listening.


Veronica,

Caregiver stress in family members caring for PWD in later stages is on par with soldiers in war experiencing PTSD. We are literally in a battle for our lives while doing our best to care for our loved ones. You are amazing to persevere for 16 years with little support, and with your family working against you. Your sister's actions, posting on Facebook, are selfish and childish. 

Do your best to protect yourself from this type of abuse. If you can't stand talking to your siblings ... don't. If you are getting bullied on Facebook ... disengage from it. 

I've been doing some research on caregiver stress or caregiver syndrome this past weekend. It's very real and impacts caregiver's health, immune system, phycological well-being, and even their very lives. Research "caregiver stress" and "caregiver syndrome" for more information, and do what it takes to get relief for your own well-being. There is information on respite from Alz Assn, and you can call them 24hrs a day for support as well.

Keep praying, and I will pray for you also.

Ken


His Daughter
Posted: Wednesday, February 7, 2018 11:47 PM
Joined: 6/25/2014
Posts: 1990


While I honestly admit I didn't read every response, I already know what they said!  And I'm still chuckling with the words, "SHUT UP FOREVER"   (It's too perfect)  

So Veronica, the answer to your question, NO, our stress is very different from other stressors in life.  And all I can offer on your sisters words is "spoken like a true idiot."   She seriously has no idea what she's talking about.  And she truly doesn't want to understand your situation. 

Oh and that FaceBook thing?  Many of us have been through it.  My guess is that it's their way to gain sympathy, from people who really don't know what's actually going on.  (Our sisters really can't complain to us, now can they?)   But yes, it's was frustrating to see my sister's post, about how you need should spend time with your parent.  (Funny, when he was alive, she never spent any time with him.)   But I'll grant her this, her hypocrisy was simply astounding. 

Just know you are not crazy, off base, OR alone.  In fact, you're tracking beautifully.  And siblings often add to our stressors.   

 

Ok, went back and read them all just for fun.  Boy this group is SMART!

And Kelly, you gave me another favorite saying: "powder puffs who stress out when their manicure gets damaged."     That's fabulous!!!   I'm still LOL


JanisO
Posted: Thursday, February 8, 2018 8:46 PM
Joined: 3/5/2017
Posts: 70


Caregiver stress is different, it's worse. I'm 63 and have a great life and family, my mom has moderate dementia but I've never experienced this kind of stress and depression, ever. I retired from a real stressful job, I've had horrible bosses who belittled me, I actually demoted and took a pay cut to get away from them.but I would rather go back to that than deal with caregiving.

I told God today: I'm just NOT a caregiver. I'm too wimpy, I'm a crybaby about this. It's horrible. So, yes, it's different. It's not for the weak that's for sure. 


His Daughter
Posted: Saturday, February 10, 2018 12:44 PM
Joined: 6/25/2014
Posts: 1990


Janis, I had to laugh a little when I read your response.  Like all people I've had the typical stressful things in life, bad bosses, money issues, children problems, and a few big griefs, losing my mom to cancer, a divorce after 25 years of marriage.  But I'll tell you what, THIS ALZHEIMER'S THING TAKES THE CAKE.   Its the hardest thing I've ever done in my life.

So I'll add our new favorite saying, if you've never been a caregiver for this disease, (LOL)         SHUT UP FOREVER!  


 
× Close Menu