How do I explain stress from caregiving to friends?

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How do I explain stress from caregiving to friends?

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It it's any consolation, I have exactly the same problem with my redneck\trailer-trash family. I've completely put my life on hold in order to care for my parents because the system in this state is so skewed that it's immoral. And everyone we know treats me like I'm a total deadbeat for "sponging" off of my parents. And now, it has gotten so bad that we can't attend any function with our extended family without my getting raked over the coals by at least one or more family members.

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Sounds like your between a rock and a hard place. You're the one who decided to invest all of your time to go and take care of your parents, which means you can't hold a job too...and your siblings just think you are "sponging!" A "worker" which believe me YOU ARE, is "worthy" of his "hire." If you have given everything up, and caring for them daily, then obviously eating, keeping warm, and possibly gas money and other blessings (clothing if needed) may be something that your parents wouldn't mind doing, for all your help to them. Families get creative, when daily care, for parents is necessary, and there isn't enough money for assisted living/nursing home care, or no one wants to "go there" for other various reasons. Possibly, it's easier for your siblings to accuse YOU of "sponging" than to look into the mirror and admit how selfless you actually have been, and how self focused they themselves, are! Hard call, not knowing you or your family, but those are some of my first thoughts. Candylee57

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It’s so hard! If you can find a caregivers support group, it could be so good for you. Those are the ones who understand the tiredness and the emotional stress. It’s also a process of grieving of the loss of your loved one as you knew them before. Other caregivers know how it is. Best wishes to you.

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I would tell her that you don't want anything you're about to say to ruin your friendship, but if she thinks it will then she's not a friend.
If she says that she will always be your friend and nothing you say will change that, then go for it.

Yes, both my Mum (love that) and Dad are ill, not in the normal physical way, but mentally. They have _____ and until you have walked in my shoes you will never know the stress that this causes watching your parents leave you behind mentally and very soon physically. May I please have a Kleenex now?

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Sotrue. I feel like I’m in mourning now because dads not there as he used to be. I know that I will have to mourn again when he passes away.

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Hi, Elsie (easier to call you that, hope you don't mind). You say your friend asks if your parents are ill, and you tell us that your mom has Alzheimer's and youd dad suffers from vascular dementia. So it seems that an appropriate answer might be, "yes, they are very ill!"

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I am an only child with dad in a memory care home with advanced dementia, and mom at her own home alone (nearby), and doing "so so". They have become my hobby and/or my second job. I am 51 - most of my friends parents' are still independent and living several states away, or, are being cared for by another family member or members. I get some sympathy but most of my friends are off enjoying weekends and holidays, and advancing their careers, while I am becoming mostly stagnant. I am the "logistics" person now, my days are consumed with my to-do list and waiting for the phone to ring with a calamity of one sort or another. NOT where I thought I would be at this point in my life, and seeing no end to this level of responsibility (in fact, knowing it will only get WORSE).

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People are often egocentric and can't really understand unless they have been there. And even if they have with one, not all experience two parents declining at the same time....one plus one is five:) This kind of reminds me of when I had just given birth to my first child and a co-worker/friend asked me what I did all day at home. Haha! Your friend needs to try to understand that Alzheimer's and Vascular Dementia ARE very difficult illnesses. What is more important is for you to find ways to diffuse the stress you are experiencing. I found physical activity helped a lot. As tired as I felt, burning off steam through a little exercise was good for me. Perhaps you should find a support group comprised of people who do understand that you can meet with on a regular basis.

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Had mom for 10 years. At first when I asked, I would say it's very stressful. But through the years, I said nothing. If a person hasn't ever been a caregiver to the aged, they just don't understand. I had a friend who once said to me, she had put her mom in a home as she wouldn't ever go through what I did. She said the things she liked took up a lot of her time. So without ever saying it, I thought too bad your mom isn't something you like. But really, if she knew her limits who am I to say how that would of went. Praying for you. Hope you have some help.

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I hope you have more than one friend...because this person is clearly clueless...maybe someone without much of an investment in any relationship? She may not be a friend if she can't get it. Being in a nursing home does not relieve our caring about others, and while some stresses may be relieved, others replace them, maybe even more so because people can't be there and watch 24/7. Not to mention that both dementia and Alzheimer's ARE illnesses. I am the least likely to endorse support groups, but I have benefited from one sponsored by the Alzheimer's Assn....find one and you will be among friends:-)

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So if it is a friend...I would say sit & talk about it with them. Communication on these topics are are a Must. You will feel good having to chance to speak & a well deserved chance to unload a bit, and they'll be Enlightened. Isn't that what friends are for?

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You cant explain stress to them when they're not going through the same things as you are. My own family watched me do everything myself and would criticize if Mom had a stain on her clothing or if her hair didnt look good. And people that are not going through what you are will never understand it..sorry to say. I would challenge you to find someone that is understanding and caring and talk to them about it. Sometimes you have to let it all out to someone!

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yes it is stressful to be advocates for ailing parents looking after their welfare. seeing that they are well taking care of..I know I been their.. The best thing you can do is to vent on this web sight( thank goodness for aging care.. most of us have been in your shoes and understand. Friends might mean well others not..I have some that say to me you need to take a break how do you not visit your loved one who is in a home and looks forward to your visits..Someday it might be me their how would I feel if no one comes to visit...Take Care God Bless

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I think give your friend a pass. I too, had no idea what care giving meant. I may not have voiced that thought but I certainly didn't understand. Maybe her parents are doing great or maybe they passed quickly.

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I now know I honestly didn't comprehend how stressful it is to care for a parent with dementia before it happened to Mother.
If that statement is made to you again here's a quick explanation I've used that may help, especially if the friend is a parent. This comes from a Support Group I attend.

"Babies don't have any concepts of the world or life skills, they learn and pick up everything as time goes on. People with dementia are in the process of unlearning, as time goes on they have less life skills and ability to think. Mother is currently functioning with the abilities of 3-8 year old. This causes her to have 'accidents', mishaps and confusion in understanding what seems so simple to us. Even though she is in a facility there are times I get a call because of this and also a lot of thinking and planning I have to do for her. It's like have a 3-8 year old son or daughter in a facility, which would be super stressful to the parents-right? "

I've used this sort of answer several times and the response from the other person does seem to indicate they 'get it' better. I also found I have more patience with friends and relatives since finding a Support group. You should see if there are any in your area.

Good luck and great job taking care of your parents. You've got double the stress I have. Take care of yourself!

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I love that analogy. It’s straight forward and should really help people to comprehend the situation.

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Els1eL, no one knows what we deal with 24/7 - and they never will until and unless it is thrust upon them.

Don't try to explain. Karma is a witch and when it happens to that friend, you can say the same thing she did.

Or you can say, "oh! are you beginning to understand now?!"

I was stressed just from having to drive 3 miles to my father every day. That's when I moved him into a mobile home in my front yard!

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My parents both have dementia and are in memory care and I understand how you could be stressed... I can't imagine anything more stressful and the "Why on earth would you be stressed". is something I have gotten from friends/relatives as well. Its so infuriating, disappointing and frustrating to have such little compassion and understanding.

I am astounded by the lack of empathy of this situation by others. Sometimes I wonder if I were not in this situation.. how much empathy and understanding would I have for a friend or relative going through caring for a loved one with dementia? I would hope I would never ask someone in that situation why would you be stressed?

There is not a day that goes by that I dont worry about them.. wonder when the next call will come that will turn my life upside down, grieve the loss of both my parents at the same time.. grieving continuously the loss of who they once were.

I have relatives who constantly ask me how they are doing. (my parents).. only really caring if they are ill.. well.. my parents will never be "fine".. they are losing their minds and abilities every single day, there lives have become so small ..it is heartbreaking. People think if they dont have some physical sickness.. other then dementia..that all is well..no..far from it.

Just wanted to say I understand the disappointment and frustration of not being understood. All I can say is find others who do understand, try to avoid trying to get these people to understand as you may be fighting a losing battle and just stressing yourself even more.

Take care of yourself through this.

(((hugs)))

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Katie, they'd be SO much better off with a 'physical sickness'.........those can be cured, they can be treated, addressed, fixed to some extent. Dementia is hopeless; no fix, no cure, no real treatment, just a continuous degeneration which the loved ones have to endure & grieve. So sad, isn't it? :(

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ls1el
Nobody understands unless it's happened to them. I have a couple of close friends who have cared for parents and they fully understand. The others don't so not worth trying to explain.
I thought when my Father went to residential care my stress would be less . I now know he is safe,fed and clean but still have stress as he's not happy in there.
I have realised you have to look after yourself too and find some coping strategies. This is a good forum for support. I just visit now. I don't get into any deep discussions. When he talks rubbish I just say you are possibly right. If he mentions going home I make an excuse nd leave. It's not perfect but much better now.Good Luck.

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I have been my Mom's 24/7 caregiver for 4 1/2 years with no help. She has vascular dementia following a massive stroke in 2014(her 2nd). At the beginning of December she had her 3rd stroke. She is now in a rehab facility in very bad shape with not much hope of recovery. When the nurses and therapists talk to me they don't understand unless they have done it themselves for a family member. Most people just think I am not telling the truth because they don't think men dedicate themselves to caregiving. The director of nursing kept pressing me because she couldn't accept that I was the only one taking care of her. Beyond that they don't understand that they are dealing with someone who has been under tremendous stress for 4 1/2 years. They only see the physical aspects of caregiving such as toileting, transferring, eating, medication, dressing, etc. Those are the easy things. The stressful things are dealing with the agitation and confusion. The sleepless nights when she wanted to climb out of bed and get ready to go home because her daddy was coming to pick her up. Fighting with me because I said I am her son. Sometimes it took from 1-4 hours just for her to get the drive and ambition to sit up to go to the bathroom. All this time you are dealing with the confusion you know you could be doing something productive like preparing a meal or changing the bedding, but you can't. Sometimes she wouldn't sleep for 48 hours and got very confused and talked to imaginary people in the room. She got agitated when they didn't answer her. She would talk non-stop, sometimes breaking out in song before finally going to sleep. She wouldn't remember any of this. After she rested she would just want a hug and said she loves me. No one could know what this is like.

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Hello John I fully understand what you say because I feel the same way. My partner is now in a Care Home because I coped for a very long time and could no longer do what was needed regarding toiletry and trying to understand what he was trying to say and when he saw animals in the lounge that didnt exist--- I used to pretend that I could also see them. I dont think people can understand unless they have experienced the situation and the mental torture it puts us through and also its so tiring.I visit the Care Home three times a week and it costs a lot of money because I dont drive. Ive found that its important to try not to let the situation entirely take over my personal life by going to a weekly club and meeting other people. I think that Dementia is a very cruel illness for the patient and their loved ones. I saw a relaxation idea that said--- When you are feeling low do this following------- Close eyes--- Think of how many breeds of dog you can name------Say the alphabet backward-----sing a song-----Name as many good things about yourself----Say what you can now hear---- Pick up an artical and describe it to an imaginary person--Lastly imagine you are walking down a pretty country lane and discover a field of beautiful flowers--You see a seat there and sit down in the warm sunshine and watch the white clouds go drifting by. If you can do these suggestions it should help you to relax. I should like to hear from you again and remember that we all are doing and have been doing our very best for the person we look after and cant do more. Best wishes Vera

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I guess all the answers are right on. I know from experience that no one really gets it, except those who are experiencing the stress.
I bet very very few did the care giving 24/7 for 27 months without a break. My wife did. I went to "work" (lucky me) When mom laid down, so did my wife. If it was quiet in the house mom would get up to see what was going on....nothing mom, just go to sleep. That didn't work. There were other issues that aren't pleasant to write about or read about.
Who understands and who cares? Not even the closest of friends or relatives. If you take on the job, I suggest doing it for love...AND money if there is any, because you will need it one day while you're trying to recover and the patient won't need it. And why would you do all the work just so the 'kin' can have a share of your work? It's not cold. It's reality. There is the love part and the business part. Just keep them separate and keep some kind of paper trail. I wasn't going to write this much!!

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I have finally learned that people who haven't experienced caring for a loved one with dementia (whether at home or nursing home) truly don't understand. My mother has been in a nursing home for almost two years and there is not a day that goes by where i worry about her. Care does not stop when a parent is in nursing home because you still have to make sure she is getting the proper care.

I used to explain to people who asked about my mother how difficult and painful it was to have my mother in a nursing home. People who didn't understand would be giving me suggestions on how to deal with the situation - like take my mother out for a ride (which would be very stressful for a women with dementia, in a wheelchair, has mood swings, has arthritic pain and incontinent), etc etc.
Some people would tell me how wonderful it is that she is in a nursing home and now i can relax.

So now when someone who doesn't understand or is not very close to me asks how my mother is, I just say "She is fine and doing well". And end it there. I leave the explanations for people and close friends who truly care about me and my mother.

It took a while, but i finally learned who I can talk to and who I cant. And who deserves a true explanation and who doesn't.

It is hard though.
Take care

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She’ll either find out ... or will turn away from her family if shes in the same situation.

Try to ignore her and her opinions ... you dont really need someone like that in your life.

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I think you are right Betsysue2002 but she is a hard one to ignore. She doesn’t get the message. “Stupid,” comes to mind. She is only interested in making me listen to her problems.

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Sadly I don't seem to have any or very very few of the problems with these type of people. There are none. Only one person has visited us in nearly three years. And I think it may be because she has been diagnosed with first stage herself. She does bring stuff to eat when she does visit. The last time it was a sack of expiring fruits. The last "friends" haven't bothered to visit in that time. When they did visit, it was for a cup of coffee and to tell us how bad things were for them but had no time to listen to our problems. She could not even finish her soda. Nothing since. No contact in three year.
When people ask about me taking care of DW I tell them it is 27 hours a day. And I mean that. Even in my sleep I am dreaming of taking care of her and things that can go wrong.
Raising a child is a teaching and growing experience. Careginving is just the opposite. We are the ones learning, not our love ones. They can no longer learn, let alone remember. Simple things are a challenge. She knows that coffee needs to be poured but, not into a flower pot or onto the kitchen counter. Even when we are not in visitable contact with them we cannot relax. We must listen constantly for changing sounds or lack of sounds.
Currently one of my biggest problems is to get her to step into the bathroom. She sees the transition from carpet to tile as a threat. She is afraid of doing it. Then if I do get her into the bathroom she will not turn around so as to sit down. All of this is related to that fear of falling. How can an outsider possible understand something like this and then give us advise.
It would have been so good for one of them to let me take a break while they changed a soiled underwear and wiped a dirty butt. Or had to jump up to stop a dangerous action and struggle with the wife when she insists on continuing the dangerous. To have to put alarms around the house to wake us in the middle of the night or even our own bathroom break. One quick swipe of the butt and run out to see what that noise was, why she is hollering,or which door alarm is going off.
"Well hire someone to watch her", And worry the whole time we are respiting about the quality of care the hired person will receive.
Time to take some deep breaths and calm down for thirty seconds.
Until the friends walk in our shoes, we have a constant battle only we here on sites like this can possibly comprehend.
I sincerely hope those people never have to experience what we are living today.

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I too can relate. It’s hard to even get relatives to visit much less friends. Dad also has that fear of walking into the bathroom from a wood floor to light grey plank tiles, and everyday it is a battle. Also, had to remove a particular rug that had a design on it he was afraid to walk on and replace with solid indoor outdoor tiles. I too know what it’s like not to ever get a break and have a tethered elder adult. I cannot imagine what would happen to him in a facility without constant watching. Even at meals he try’s to eat a Kleenex or napkin suddenly or pour his drink on his plate. I have given up eating until after I feed Dad as he has all but forgotten how to feed himself now. So you are right when you say no one really knows what you are going through unless they have been there. Don’t expect them to understand, instead give them a chore to do that you can’t get done as you are way too busy! Don’t feel bad about asking,if they are your friends they will be happy to help or they will disappear and you will have one less,person to worry over!

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Many of the stress in taking care of the our elder can be eliminated by proper plannning. Take the unknown and move them to known issues and plan for it. Have fre good friends who can give you some backup and out source some of the work to known family members or delay them. Focus on only things that need you. May be this is for few months or years. Do not give up your 8 hr sleep.

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I was almost in that place once. I could be going through that stress now. Yes, I am so very sorry for you! How can anyone not see the stress in it?

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Unfortunately they just don't know better. It might help if you explain that it's akin to the stress of raising children, although somewhat in reverse.

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so many good answers...but i'd like to add one thought of mine..it seemed so tough when i was caring for my dad, but now that he has passed, i so miss those special moments together....i love him more all the time and so happy i could give him back all the love he gave me in my life...would do it again..just remember to take time for yourself, so that you can stay positive for your loved one..

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I have a couple of "friends" that I am angry at for this reason. One was incapable of taking care of her mom because she is lazy, though she lived in the mother's home and the mother was taken out by the capable sisters. This person failed at basic care giving. The other hired in home caregivers round the clock with mom's money while she ran off to the opposite coast to build a dream house she endlessly brags about, and got sued by her sibling. I cared for my mom 24/7 who was bedridden in my home on hospice for nearly 2 years. I could hardly leave my home. My mom died 3 years ago and now MIL is failing. The responses I often get from these "friends" are "call me when you are ready to go out"....I guess these are known as "fair weather friends", only there when you are doing well, despite knowing them 30-40 years, yet the first friend won't hesitate to ask for favors constantly from me. Sometimes you have to break off from stupid people. A dog or cat makes a better friend.

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The responder who said "you can't teach stupid" said it best...I can empathize. My good wife was in a nursing home for 12 years before she passed away...She had massive handicaps...I visited her twice daily...Even family did not understand the stress.

Grace + Peace,
Bob

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You don't have to explain to anyone. It is complex and I don't think people who have not experienced it really understand. Both my parent have been in a NH since October of 2017. They are 3 minutes from my house and I visit at least every other day. I find myself buying things for their comfort often, paying their bills, and seeing to their affairs in general. It is stressful. It is difficult. It is emotional. It is worrisome. I have POA for dad and guardianship of mom. When I visit, it is almost impossible to carry on any kind of conversation due to dementia and Alzheimer's.

I sometimes tell people it is something you learn and will never use again and you wont understand until you have to experience it.

One piece of advice I would give you is to make sure you are taking care of yourself. And stop worrying about people who do not understand your situation.

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I agree. My dad was in AL just 6 minutes away. Had my phone with me 24/7 just in case something would happen. There wasn’t much time when I was doing something about his care. Being the medical POA and having to make some big decisions about his health care was very stressful.
Unless someone has been in the same situation they can’t understand.

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Perhaps part of the answer is groups of us in given locations to meet in person and talk to each other from time to time. My wife and I attended a group of parents who had alcoholic children, and like reading here, found out that we were NOT alone and that MANY had worse problems for more years then we had, as compared to what we had so far experienced. Just that gave us a lift!

I an the 24/7 person for my wife, about five years now. Between us from prior marriages, we have 7 children and one grandchild who is an adult and lived with my wife and me when her mother, one of my wife's children, took off for 7 or 8 years "to find herself!" None of those eight have even voluntered to discuss a possible, mu;ti-generational home of theirs to live in together! (Cher in the movie "Moon Struck" had a 3 generation home)

I now "joke" about the companies that tell you they can help you find a home for Mom but I believe they should add on to that sentence "as far away from you as possible!"

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Yikes, I would shy away from a multi-generational home as well. That's a quagmire in the making. I work in real estate and would never invest in that type of a designed home. They tend to turn-over quickly and sometimes for a loss in value because people tire of that living arrangement real fast. Bad investment!

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short answer: you don't. People, even well meaning, cannot understand. And that is not necessarily their fault, but they are not in your moccassins.

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How do I explain stress from caregiving to friends?

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