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?

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.

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.

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.

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 🦋

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.

Know one truly understands until they go thru it. It maybe time to admit its too much now and ur wife needs more care than u can give her.

Medicaid may be the way you need to go. Do you have any assets besides a home and a car? These are exempt when applying for Medicaid. I will give you my GFs parents as an example. Both in their 80s. He suffered from Dementia and he needed more care than she could give so she placed him in a NH. Their monthly income consisted of SS and pensions. They had 60k in assets. Medicaid allows for assets to be split. So, the 30k he received went to his care and when gone Medicaid was applied. My GFs mother remained in the home and had the car. She received enough or maybe all of their monthly income to help her live. The Community Spouse cannot be made impoverished.

I would make an appt Social Services and see what your options are. You may need a elder lawyer to help with the splitting of assets.

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.

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.

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.