How do I explain stress from caregiving to friends?

Has this person ever been the supportive type? I think that empathy is a character trait your friend lacks - anyone who is that clueless isn't going to listen to any explanations from you, it would be like trying to explain colours to the blind.

Until someone has walked in your shoes, they cannot ever really understand. Often they will think it cannot be worse than caring for an infant. Never once thinking it through. The constant need to be vigilant over every single detail all the same while as getting little to no emotional reward.
Many times elders with sever memory issues are either abusive and/or no clue who their daughter even is. This also just adds to the stress and debilitating efforts involved.

i am not sure there is any way to convey that knowledge in words.

This may sound callous. After 3 years of dealing with my mothers dementia, I have found that nobody cares. Period. It’s incredible to me , but people really don’t care. Perhaps if our parent had a malignancy, or severe heart disease, diabetes, whatever, there would be more support. I agree with the comment made in an earlier post, if no one has walked your in shoes, they can’t possibly realize how hard this is

People honestly and truly don’t realize what intestinal fortitude it takes to be a caregiver for an adult. My own children don’t realize what my life caring for their father involves.

Short of giving these people a crash course in dementia and certified nurse assisting, they will never know. It’s not worth explaining. If a person has the opinion that it’s “nothing” and we have no business being stressed or anxious, I’d just turn and walk away.

Thank you all for your answers. My husband has been telling me to walk away from this friend for years but I always feel sorry for her as her husband died young leaving her to bring up her daughter on her own. However, the empathy I show her is not reciprocated and she is a talker, whereas I do all the listening and commiserating with her problems. She really hasn’t a clue what Ive been going through so harsh though it seems, maybe I should cut ties with her. 😳

I think ErinM60 said it perfectly “Perhaps if our parent had a malignancy, or severe heart disease, diabetes, whatever, there would be more support.” I think that’s very true! Very, very few of my friends and even my dear SIL understands the stress and sadness of watching my Mom decline right before my eyes, a shell of her previous self. Watching and monitoring every aspect of her health, even though she’s in a NH. She asked If they’re ILL!? YES THEYRE ILL!! I couldn’t have held that back. Only my DH really gets it. I also think there’s a stigma about dementia that makes people afraid of watching it, almost like it’s such a personal and soul baring condition that it’s embarrassing and uncomfortable for those a little removed from the daily trenches.
If you want to give this friend an eye opener, ask her to visit your parents with you one day...say you could use her help with something or whatever. It might be educational for her and might help with a little empathy for the residents. And for you. But if she’s not worth it as a friend, just limit your contact.

There really is no way until they experience it. Hell, even my own family members don't understand despite seeing/partly experiencing what's happening when they visit.
They all act "how bad can it be?" with me being pretty much the only person (my dad tries to help but he's 70+ and can realistically only do so much, which isn't a lot) taking care of her.
The lack of sleep for days on end, the not eating because I never take the time or am too stressed, barely being able to take a shower. Having not gone out or socialized with another human being in almost 3 years.
Then they have the gall to ask me stuff like "why are you getting so thin?"
I actually once over heard my sister (who's almost 40 and lives on the property in a trailer, real winner) tell my siblings I don't do enough and why don't I/I should have a part time job in between the 24 hour care, doing all the house chores/cooking, and running all the errands.

The only person I ever knew who understood the burden was a friend who had taken care of his drug addict mother. He's moved away now.

Els1e, caregiving as we all know is 24 hours a day, 365 days per year, and could go one for many years. Unless that friend has been in your boots, or even had on one boot, they are clueless regarding the demands.

I remember grumbling to a co-worker about need to drive my parents all over the countryside. She was shocked that I would even be complaining since my parents drove me everywhere when I was a child. I fired back, "that true, but my parents were in their 70's when I was a child... big difference".

My folks were in long-term-care, and in Memory Care. Yes, they were being taken care of, but it was the years prior to them moving that had slammed my well being. The stress just changes to a different set of stress points. Like the telephone. Oh my gosh, whenever I saw on Caller ID one of the facilities were calling, I was like jello and couldn't stop shaking for the rest of the day. The facilities had to call any time one of the parents had a fall, or were being taken to the ER, etc.

Then the MAJOR stress of having a boss who had a heart of ice, who didn't understand or cared to understand whenever I need some hours off.

Thankfully my current boss totally understood, because his wife had Alzhimer's for many years and he was the main caregiver for awhile until he hired a caregiver.

I appreciate the great answers you've gotten so far, (&i will add my "2cents"☺). It seems that lots of "caregiving stress" is emotional. I mean, of course our bodies suffer, if we do 'hands on' care. But our complex emotions (from facing the deathlike state of elderly LOs) is invisible to others. It seems exhausting to even try & convey our 'anticipatory' grief & pain to others. Since we continue so long in the grief process, it can wear us out to a dangerous extent, & talking about it is only helpful if the listener is familiar with our struggle. (Otherwise it just pisses us off).

Unfortunately, you can't fix ignorance and you can't teach empathy. For anyone to ask you 'why on earth' you'd be stressed, knowing full well that BOTH of your parents are suffering from late stage Alzheimer's and vascular dementia is not only cruel it's the epitome of STUPID! Sounds like it's time to cut ties with your 'friend'.....you need supportive, loving, empathetic people in your life, especially now, nothing less.

Best of luck & here's a big bear HUG for you today!

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.

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!"

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.

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

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.

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..

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.

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?

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.

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.

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.

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

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!!

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.

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.

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)))

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!

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!

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.

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