I've been my wife's caregiver for 7 years. Daughter says "I know what you're going through". How do you tell her or anyone they can't know?

Ask her to take care of mother for a couple of days or a week. Then she will know what you are going threw

48 straight hours in the home is what makes the difference. It is impossible to know what's really going on without spending 48 hours in the home.

Just explain to her that a turtle cannot understand what it is like to fly like an eagle. A cow cannot understand what it is like to swim like a dolphin. Why, because they have never experienced these things before. You my darling daughter are a great help to me and I am grateful for it.
But, precious, until you have walked a mile in my shoes it is not possible for you to understand what I am going through.

I am one of those daughters. “You don’t know what we are doing! It’s our life! You have no idea! You have no right to suggest THAT! Your dad and I are doing what we think is best!” And I am still so PISSED!
I DID KNOW what was going on…. to a point. The secrets they kept about the abuse, the butcher knives, the bruises, the bloody scabs on my dad’s face, arms and legs, the guns in the coat closet, the hidden deadly sap, the car dents, the busted and bent garage door; the overall physical and mental decline of them both—I didn’t know. I had to watch from afar until the charade blew up.
They didn’t want any help. They made sure I couldn’t call or wouldn’t visit. They fired their doctors. They excommunicated their close friends. They put on a good show of normalcy. Then the whole thing went kablooey. My dad was in the hospital again with COPD-emphysema end stage complications while I cared for my mom. I called the cops when my mother beat the crap out of me. I later learned she slammed a (now broken) table on my husband earlier in that day!

I was up against my parents living their life the way they wanted.

Her frontotemporal dementia is being medicated and monitored in a locked down memory community by order of a judge, after a stay in the psychiatric hospital instead of jail. My face is scarred. You bet, I didn’t know! And my dad and mom made sure I didn’t!
Please! Your daughter is trying to help you. My parents were furious when I made suggestions. They ignored and hurt me. (I am an extreme example of what could happen! What a sh*t show!) Your daughter is trying to respect you, your marriage and your lifetime together. You want to live your life the way you want to. The way you think is best. Don’t we all desire to be in control of our lives? You want her to help the way you want. You want her to see your life through your eyes. And she is asking, pleading for you to to have more alternatives from the way you are doing things now. There will come a time when neither of you will have that freedom. I certainly didn’t, and presently am heartbroken.
I ask you to be gentle, give grace and forgiveness, be patient. Let my whispers of anger and frustration be a life not lived. Only you can live your life. Please get help.

Davidreid79: Imho, no one can fully grasp the scope of caregiving until they are the carer.

How old is your daughter?

I remember before I had kids how I thought I knew EVERYTHING and I was so judgemental on mothers because I “knew what I would be like” as a mom.

Hells bells, what a moron I was! It’s that life experience of thinking I knew a lot to then experiencing it to know, NOPE! I know nothing.

Her recommendations about AL & nursing homes more than likely comes from being worried about you, and you burning out. Just try to thank her for her concern, but remind her that you’re not looking to her to solve your problems. You’re looking for more moral support that fixes, because you know (from experience) there are no easy fixes.

Patience. She means well, but anybody who doesn’t do it day in day out, doesn’t and can’t understand. There’s nothing wrong with telling her just that so long as you say it kindly.

Start off with, “I know you mean well, but…” or “I appreciate your suggestions, I really do, but…”

You can try talking to her and giving full facts but do not expect her to understand. I would seek immediate placement so you are relieved of this burden and can live to the fullest while you still can do so.

Your daughter means to sound supportive, but, of course, she cannot really understand what you are dealing with. Don't frustrate yourself by trying to get her to actually understand. Accept any help she is able to give, but look to other caregivers for empathy. If there is an in person care giver support group in your area that you are able to attend, you will find others who really do understand and who might also have some useful ideas for solving some of your problems. Online support such as this website can be of some help, but check with Medical Service Providers and churches see if there are any Care Giver Support Groups in your community.

No one can completely understand what you are going through. You're losing your life's partner - the woman you chose to love and cherish all your life. Its like losing part of yourself.

Remember, though, that your daughter is losing part of herself, too. Its not the same, of course, but her mother represents life to her; she birthed and nurtured her since conception. She's also worried she'll lose you, too and wants to do all she can while she can. Most likely, she's not trying to take over, she's floundering just as you are, trying to figure out her new role in the family now that mom can't do the things she used to do. Clearly, she wants to help and is showing love and compassion for you in the best way she can figure out right now.

Please find a support group that can help you with your feelings. You need your daughter and she needs you. Be grateful for the things she's doing for you and thank her. Make a list of the things you think your daughter can help with on a weekly basis and give it to her telling her these are the ways she can help most (keep a copy for reference). If she can't do all of them, be appreciative of what she can do.

Be frank with your daughter that unless you ask her, your prefer that she not try to make decisions for you and your wife. You have heard what she believes to be the solution but its not the one you want to consider at this time and to please drop the subject. Understand, however, she's worried about you, doesn't know all your financial details and is probably listening to the recommendations of friends about something she doesn't understand very well. (i.e., the cost of nursing care, etc).

Of course a CNA is like a babysitter. The personal feelings you have are unique to you. Don't be afraid to use their services while you get some much needed rest; you'll burn out fast otherwise. No one will ever care for your wife the way you do but you do need help. Appreciate what's available and make good use of it. Don't expect the impossible,

Take an hour of scheduled dedicated time from ANYONE that offers. Make the most of it. Sit down and make a list of all the step by step and pop up needs and sort them out. Consider all YOUR needs too and add them to the list. Some type of help might not fit your wife’s needs, but an additional pair of hands/head can make a BIG difference: Take the recycling out every week, walk the dog, come sit with my wife she is sleeping and I get some time to go for a walk. What is offered may not be a fit, but building trust in small increments will work out in the long run.

Only someone who has actually been a caregiver 24/7 can understand the emotional, mental, and physical toll it takes on the caregiver. It is maybe one of the most difficult things someone will do. Having said this, I don't think the solution to this is to necessarily put your loved one in a nursing facility. It may be the answer for some but not for everyone.

Your daughter is concerned for you and possibly thinks the easy answer is to place your wife in a nursing facility. I have had my mother living with me for a year and a half. It has been a difficult road but it's what I have chosen to do for my mother. My sister's answer to all this is to put her in a nursing home. This has always been her answer when I have told her I need more help. I've had to come to peace with this. She can't do what I'm doing.

Try not to put too much of your energy into worrying about what your daughter can or can't do to help you. If you are committed to and able to keep your wife at home, you will need all your emotional, mental, physical, and spiritual energy for that. I have learned this the hard way, as I've held on to a lot of resentment toward my sister. My relationship with her is now strained through all this...I'm sure you want to maintain and close and loving relationship with your daughter.

I have recently brought in Visiting Angels. She too is more of a babysitter, but I know she is able to help get mom up, put her to bed, help in the bathroom, feed her, etc. This allows me time to get out for a few hours and have time to myself without worrying about mom.

Take care. You are doing a wonderful thing and if you decide it is beyond what you are able to do, placing your wife in a facility is the right decision for you.

God Bless

She may not be living your life and dealing with it 24/7, but I think she has some idea of what is required and that is the very reason she is suggesting assisted living or a nursing home for her mom. She doesn't want to see her dad destroy himself trying to do it all and she knows she can't do it all either.

This is an awful stage of life. There is no denying it.... Tough decisions have to be made and nine times out of ten, this is not how you envisioned your life. There is no mention of your wife's health issues or prognosis, but if she needs 24/7 care, you might want to consider a nursing home where she can get that type of care from three shifts of people. Then you can go back to being her husband and just managing her care and visiting her. You are of no help to her if you are so stressed out and tired that you start having health issues yourself.

There is no magic answer here...you have to make the best decision you can for yourself, for your wife and that you can afford.

Take care David.

Tell her if she “knows” then she’d be there more to help. Assisted living and in-home caregivers is not for everyone, financially and for other reasons.
Know in your heart that you’re doing the best that you can. And let this be a heads up of what she thinks about caregiving when you need your daughter’s help. Spell it out for her.
love and light

Ive been on both sides of this; as the burnt caregiver, and as the daughter who is concerned for the caregiver. She loves you both, and wants both of you to be well. I think, " know what you going through " is trying to get you to know she cares.

She sees how cargiving is affecting you and she's scared. She sees her mother's health failing, and she sees her dad risking his health too.
She is suggesting Assised Living as a compromise, so that you could both live together, but you get support, with at least some things like meals, and personal care for your wife, and some social life you aren't getting now when you are consumed with your wife's needs. If your wife passes, you could move to Independent Living or a over 55 complex, or back to your home. If her medical needs are too great a nursing home might be a solution. You could still spend most of the days with her, and be her advocate, but go home to get uninterrupted sleep at night. Just having a couple hours to unwind at night, not "on call" and a solid night sleep is priceless. I know when mom lived with me, I didn't sleep well. I was on alert for her call or if she was up.

Make a list of what you want home health to accomplish. Then provide them the list when they arrive, and let them do it. It might not be done exactly like you do, but it will be OK. Maybe have them arrive for four hours after lunch. They can help with any toileting, watch a show on TV with your wife, play a card game or puzzle or conversation, help her shower. Make yourself scarce at that time. Go for a walk, or take a nap, run an errand. Or have an overnight aide a few times a week. You sleep in the guest room. They do all the 3 am stuff. You get a good night sleep.

Rather than criticize your daughter which would alienate her. Try asking her how she "understands." In the midst of this conversation you can help her to understand all that you do daily. She should have a better appreciation for your efforts.

I agree with your daughter that you need a little more help in caring for your wife. God forbid, but every person is liable to get sick, injured, or need hospitalization. Somebody - more likely a small group of somebodies - should be well-acquainted with caring for your wife when you can not. Consider sitters and home health aides as well as family, friends, member of faith community.

You are right. No one can know the terror and exhaustion you experience.

At least she is trying to help which, per this site, is way more than many caregivers have.

You are also right about assisted living and nursing homes. I cared for my husband at home, then he spent time in nursing home, then I pulled him out and brought him home. I think it was harder in nursing home. I had camera in room, and woke up one morning to footage of my husband with ripped off clothes and half fallen out of bed. He had been that way for 8 hours.

it was more stress constantly battling the home and state to get home to do what they were being paid to do than having my husband home and doing things myself. At least then I know he is getting meds, meals, baths, grooming. I had hours of video for state regulators showing neglect, they refused to issue deficiencies.

As my husband is now home, I am constantly simplifying as to be able to keep up with the work. Household staples are delivered. More prepared foods are bought from freezer section. I have a giant TV and multiple streaming services so husband can watch his favorite shows any time. Also have Audible with books that are read.

It takes a lot of effort but it is LESS effort than battling nursing home non stop and still net getting care. Quality of life inside these places is terrible. Even if you find one that seems good, the administrator can change and facilities get bought and sold.

Good luck to you. I know this is excruciatingly hard.

What is it you would like to accomplish here?

Of course people that have never been there can't understand. That is a given.

Does she really need to understand? If yes, for what purpose? Helping more? Being a person you can vent to? ????

I wonder if you could tell her that you could use some ideas. Perhaps, she could spell you for a day and share her ideas after the ongoing care. I mean this seriously not as a provocation. It is quite different from the inside as most things are. And new eyes often have new ideas. Good luck, anyone who has had a child should remember the sudden shock of constant responsibility and attention to another being. I adored my grandkids, but the relationship was different when they stayed for a while in stead of having some brief outing or treat! Same thing for you taking care of your wife 24/7 rather than popping by with a helpful gesture. I would yell at the little darlings sometimes, while feeling critical when their parents spoke harshly to them. It is the constant grind that wears people down.

No one ever knows what we go thru unless they are doing it them selves. It is a position I would not wish on my worst enemy. It does not matter what relationship you have with the patient, good or bad , it is not something we can do alone . We are human after all . What has helped me over all is a CareTakers group . Sharing time with people that KNOW what we are experiencing. Listening to things they have done that helped them .. I also chose to take a mild antidepressant and that helped . I talk a to professional on a monthly basis. I have been exposed to many resources. There is help . There are people and things that can be done to help . You might give your local Counsel on Aging a call and they might be able to head you in the right direction . If you don’t take care of your self , you won’t be able to take care of her . There are legal things that will have to be done. Make sure there is a DPOA so when she can no longer make decisions so that you can . Bring in help so you can take some time away . Does she have friends that could sit with here a few hours a day , how about church people? Don’t be too hard on you daughter. We pay for a man to come in 3 hours a week .. As things progress it will get worse and others things will have to change. I can still leave the house and do a few thinks that help my sanity . And have learned ( from my CareTakers group ) so many things that have helped. Prayers are with you ..

Have her come for one day to see how it is.
Tell her that is your request for a gift from her to you so you can have an 8 hr day to yourself.
Only then will she get a glimpse of what you're going through.

If you've been in the Service, you could get up to 30 hrs a week with Free in home care.

"how can I convince her that she can't really understand what I'm up against - and that the solutions she offers I've tried and they haven't worked!"

Why aren't you considering AL or a NH?

What do YOU see as solutions? No facility, no CNAs...do you expect your D to take on caregiving?

First - she will never fully understand - nobody will until or unless they have been through it. What seems like an easier day to someone doesn’t know how exhausting all the other days were that this easy day is still tiring.

I can only say that I felt exactly like you - the first year after moms stroke I allowed myself to “try caregivers to help”. It was awful - I felt like it was more work - it took so much out of me to train and get everyone comfortable (including myself). It did feel like more work than it was worth. Opening my home - allowing this new way of life - strangers having to live up to the way I did it - believe me I hear you on every level. It didn’t feel like relief - it felt and was more work and then covid hit and I was locked down alone….that was hard! I’m still recovering.

A few months ago - I knew I had to try again and the time and energy it took was again a lot! The interviewing and matching a good fit for everyone - the showing them how I do things - where everything was - how mom liked her lunches - where the supplies were - what activities she liked etc etc - I did have to do most of this but I also gave time for them just to know her without me in the room - I had to change my expectations that everything or anything would be done exactly like I would do it - it won’t lol nope not at all - nobody will do it like us but they can do it and somedays mom is okay doing it the other way and when she isn’t but I do know it will still be okay.

The amount I get done in a day and the amount someone else gets done in a day with mom and for mom - will never compare. I also thought “I would love to be given a break from bathing or changing” but there is no way to know when they will need changing - you are right. But even if for 3 hours someone else got her lunch and did a crossword and restocked a few supplies - it was 3 hours I didn’t have to be fully ON.
Nope - nobody does her wound care or dressing changes but me - or meets her nurses - nobody does a full bath without needing my assistance - and they cannot do the hoyer or wheelchair without me - but they Can get her lunch and help with moms laundry - or lotion her legs and play a game - - set up her stuff to brush her teeth or sit with her outside - etc. so my suggestion is to try hiring a few hours of care a few times a week again.

Maybe in a few weeks time you just leaving and going for a ride or meet someone for coffee - or going to your own appts - etc will allow you to feel a little relief - a little more rested and a little less having to be “ON” all the time.

Again - I understand everything you said - I thought “why am I paying people to sit here when it still feels like I’m doing all the hard work”. But then slowly (and it did take me a few weeks) but slowly I stopped “looking in to make sure everything was okay” and I began to realize that even just someone sitting in there and having lunch - doing a crossword - making sure her water was full - did help me. It was worth having a glorified sitter. I had moments to myself - even if they were small and quick - small and quick are still better than what I did have which was none at all. Try again. You need it and you deserve it. It will take time - it probably will feel weird - it will most likely not feel like much at first - but slowly it will feel okay. Take this from someone who really does understand this really hard journey - wishing you better days 🦋

Ask her to take care for a weekend so you can take a break. Check into a hotel for 2 days and relax.

Afurther 2 full days of taking care of her mom, she should have a better idea of what caring for mom entails.

Maybe your daughter realizes mom is "gone", she doesn't want to lose her dad too, do to burnout or a "threat" to your health.

I'm caregiver for my husband, so do know what you are going through. However, I feel you shouldn't dismiss your daughter's suggestion of hiring in home help if your finances permit it. You don't need a nurse, nor necessarily even a CNA. Good home health aides, preferably hired through an agency, can take a tremendous burden from you. In some places they are called PCAs, personal care assistant/aide, or PSS, personal support specialist. These are not medical positions. Besides doing things needed for your wife, e.g., bathing, dressing, reminders to take medication, taking her to appointments, they can also relieve you of some daily household chores such as laundry, light house work, shopping and meal preparation. And of course having someone else in the house for several hours a day would allow you time for yourself. I know our children are very relieved we have home health aides, because as other posters have pointed out, caregivers who insist on doing everything on their own often do so to the detriment to their own health. We've been fortunate to have very good aides from the agency we use, and when there have been ones that we didn't feel met our needs, or who were unreliable, the agency was willing to work with us to find someone else.

My dad went through a lot caring for my mother and there was no way he'd have put her in a nursing home because he believed he was honoring his vows. I admired him for that, and I helped when I came up to see them every week, including doing the unpleasant tasks like showering my mother while she howled like a banshee.

My dad's reasons for doing what he did were deep-seated and stretched back to his mother's terrible marriages and his childhood as well as his belief that my mother "had a lot of credit built up" for the years he worked six days a week and she held down the fort at home. There was no arguing with him, and I had no interest in that argument, but in the end, his devotion killed him through lack of sleep and exhaustion, and my mother outlived him an additional 2 1/2 years.

After Dad's death, it fell to me to see to Mom's care. Both my husband and brother -- two very hands-off guys -- suggested that we move into Mom and Dad's house so I could care for Mom. I shut that idea down immediately, because I HAD been in my dad's shoes when I moved in for two months to care for both of them while Dad was dying. I lost 10 pounds during that time and never slept more than four hours a night because my mother was up every couple of hours to go to the bathroom. I was a jibbering wreck by the end of that time.

With all due respect, your daughter is trying to help, but you aren't listening. She's dealing with both of you while you're dealing with your wife, and she's attempting to be respectful of your role as husband and father while giving you ideas of ways to handle the situation at hand. You are rejecting them and them blaming her for not "understanding." I don't believe you understand what your daughter is dealing with either.

It's entirely up to you as to how you handle your wife's care. Your daughter understands that and is allowing you to be the captain of this ship. However, she is not required to go down with the ship just because you are willing to.

I miss my dad every day of my life. He was "the healthy one" of my parents. Mom started going downhill in 2014 and died this past July. Dad was perfectly fine until October 2, 2018 when his doctor informed him he had inoperable cancer. He was dead on November 21, six weeks later.

This could be you. If you won't take care of yourself in addition to your wife, I hope you have at least gotten all your affairs in order -- trust, will, power of attorney, advance medical directives for YOU -- so your daughter can take over at a moment's notice if need be.

It is your daughter, give her some credit for her powers of observation.
Of course no one except you can "know" what you are personally going through. However, she has an idea, a reference point, and even though she doesn't have all the answers, and cannot take over for you, she has tried (and failed) to offer you some comfort in her words. Inadequate words, but yes, aren't we all just a bit inadequate?

Maybe you need some respite, a mini vacation from caregiving, before you burn out 100%.

Empathy is learned through scar tissue ONLY. How can your daughter know exactly what you're going through without having lived your life? And how can you expect her to? Or want her to, in fact?? You took on the job of caring for your wife and have decided that no in-home help is 'good enough' for you. Yet your daughter isn't doing enough either, in your estimation. And her suggestions for hiring extra help or placing her mom in Assisted Living or a SNF aren't right either.

So what IS the 'right' answer?

The ideal situation would be that your wife was in good health again. But that's not possible, unfortunately. I'm sure you would love your daughter to care for her mother for at least 8 hours a day & quit her job to do so, but that's not possible either, most likely. I'm sure she has her own life/family/job/responsibilities too, right?

So come up with a solution that will make you happy and won't require your daughter to give up her entire life for her parents in the process. Respite is available (and Medicare pays for it) in an Assisted Living Facility for your wife for a week or two every so often. Take advantage of that and get some R&R for yourself. At the same time, see how your wife likes it there. Many husbands have sold the family home to finance their spouse's stay in Assisted Living and moved into a senior Independent Living apartment and downsized at the same time. There ARE solutions out there that DO work. You can hire an agency to send help to you in home and fire the people that don't work out. Or give them a to-do list of what exactly you'd like them to do, for your wife (bathing, laundry, etc) and a list of what you DO NOT want them to do, ie: texting, using cell phones, etc.

I have been caring for my husband for the past year after he's had a myriad of health issues and surgeries. I can't possibly expect ANY of our 7 children to fully understand what I've been going through! He will be having a liver transplant in Feb and I will again be his caretaker during an arduous journey, again not expecting ANYONE to 'understand' the scope of what that means. Why should they? It's MY job that I took on when I decided I loved this man and would care for him through thick & thin. Our 7 children have their own lives & their own issues/children/jobs to deal with, which is how it should be, frankly. If I need them, I will ASK them for help, and let them know precisely what it is I need and when I need it.

Wishing you the best of luck coming up with a plan that works for YOU in all of this.

Wise insights have been given to you by those who have walked in your shoes. What is your wife's health issue? Is it ALZ/dementia? I'm wondering how old you, your wife and your daughter are? And are there any other adult children?

I get the sense (and please correct me if I'm wrong) that your daughter not really understanding what you're up against *plus* her suggesting AL is really more about her not being more involved for the long haul, which is concerning to you. One of the solutions she offered was AL/NH and you haven't tried it (unless I'm mistaken). Perhaps this is a solution you don't wish to consider, for whatever reasons. But your daughter is giving you hints that she doesn't want to be the solution to imperfect in-home care and aids. If this might be the case, you will need to take what she says seriously. She may not want to be "assumed" into more of a role than she's already playing -- and even if this disappoints and dismays you, it is her decision to make.

Does your daughter live with you? If not, there's not going to be a solution to " when needs arise at 3 A.M. , or 6 A.M. or any random hour..." unless your wife has an overnight aid or she's in a care facility. Your daughter can't/won't be the answer for this, so you may need to settle for a less-than-perfect solution.

Because money is an undeniable factor in what you choose, I recommend consulting with an estate planner or Medicaid planner to get an idea of the landscape ahead. It is well worth the investment of your time and funds. Even if your daughter doesn't really understand, there's a whole universe of people on this forum who do. I wish you much wisdom and clarity, and peace in your heart.

I think when people say "I know what you are going through" they are really saying they understand that things are difficult and they empathise, not that they literally "know". Your daughter is doing her best to help and offer solutions, that the help isn't enough or the solutions aren't feasible isn't her fault, if you have specific tasks that need doing then ASK, don't expect her to be a mind reader. Beyond that I think you need to recognize that she has her own life and needs to take care of and she isn't obligated to help you at all, so graciously accept any and all help that is available to you (even if it is imperfect) or you risk giving the impression that you are impossibly inflexible and can not be helped.