What is a diplomatic way of responding?

@marie I get it! Mom lived in assisted living nearby, and my sister and I were her main caregivers.
My brother couldn't understand why it could take 3-4 hours to prep my Mom's meds for a week (she was in assisted living and we were trying to avoid the $75/week charge for the task.) I asked him to take over the job, and while showing him how to do it he got to see her "help" by messing with the med packs, interrupt for several "While you are here could you please..." and wander down the hall without assistance or her walker - THEN he got it!
Another brother couldn't understand how hard it could be to take her shopping for a much needed winter coat - until we sent him and his daughter out with her to do it - THEN he got it!

Does your friend live nearby? Maybe you can ask her to spend a day or half day with you, where she can see exactly what your life is like now. Perhaps ask her over to help you with a small project like organizing your kitchen things (even just a few drawers or the spice cabinet) and let her observe the constant interactions required with your spouse, and how it eats your life.

Is this a possibility? If not instead of excusing yourself from her call while assisting your husband, maybe put her on speaker phone and let her hear a typical interaction?

Imo, unless you live the life of a 24/7 caregiver for a person who has dementia, you can’t possibly understand. Sometimes, I would share my frustration, exhaustion, etc., with friends, but only those who live it can really understand. They could see how exhausted I looked. I’d get hugs and words of sympathy sometimes from people I didn’t confide in but they knew. Your friend may never have to deal with what you do.

Imo, unless you live the life of a 24/7 caregiver for a person who has dementia, you can’t possibly understand. Sometimes, I would share my frustration, exhaustion, etc., with friends, but only those who live it can really understand. They could see how exhausted I looked. I’d get hugs and words of sympathy sometimes from people I didn’t confide in but they knew. Your friend may never have to deal with what you do.

Oh, I just recalled something I used to use as an analogy…..I felt spread very thin as a caregiver. Imagine you are a doctor….so, you go to work one day and must take your child with you to the office. When you arrive you discover patients lined up to be seen, but there is no staff, so you must register patients, answer the phone, see patients, take vitals, and then the toilet breaks….so you must clean rest rooms too while you change your kid’s diapers, make bottles, do the books, pay bills, and clean the building. It’s too much to do all those things, but most family member caregivers do it. We got outside help to come in. I hope you have that.

@sueinmn Thank you. Excellent suggestions.

marie, Good morning. Depending on the time zone where you live, you have probably have already started your 36 hour day. Preparing breakfast, putting everything in place that you know you'll need when he wakes up, clean pull ups/diaper, helping with the toileting, morning wash up, possibly having to help feed him etc. The same process as when your children were babies. The big difference now is that you're caring for a full grown adult. Nobody, and I mean NOBODY, who has not been down that path, is able to understand. SO...I don't believe there is a "Diplomatic" way of explaining what you're faced with. Just tell your friends, in a friendly manner of course, that they should feel blessed for their position, and that you truly hope that they are never in the position that you find yourself. Invite them for lunch some day, or just a cup of coffee - let them see, first hand what caregivers contend with on an hourly basis, every day. All the best to you, stay calm, don't allow others, who do not understand, bother you, they mean no harm. Maybe even as them one day, to sit with husband, while you run to the store.

I know what you describe well because I have a high school friend - from years back - that goes on and on and on, about her, her other friend's husband who has dementia but doesn't acknowledge the similar experience of caregiving I'm going through. It's odd, so unfortunately, I don't call her as much. I know that when I do, not to expect much, which is sad. And I know, at this point, just not to go there with what's going on in my life. Unfortunately, no one can relate to what you're going through other than if they're going through it. I find not even my adult children, who I'm sure mean no harm, turn the other cheek. If this is a very good friend, and they mean that much to you, then I might say, "I love you as my good friend, and we've always supported each other. I think I'd just would feel a whole lot better, when we talk or see each other, if you could just help me navigate through this, and occasionally put yourself in my shoes for a day or two. As a caregiver, your love and support are all I need." Now I know that's straight talk, but I think when we tell loved ones - people that are really important to our well-being - how we're feeling and how we'd like them to acknowledge what we must be going through, that often helps. I just did this with my own adult son yesterday and I'm still waiting for his response, although I think he's in denial. What I do know, is that I feel better this morning for letting him know how I feel. Hope this helps. Best, Karla

@kjc48 Thank you for your thoughtful guidance.

@fred1 Thank you!

@kjc48 We moved! We are closing on our house on Tuesday and will be full time residents in our apartment in Manhattan.

Our 52 year old twins spent a lot of time with us in the past week helping us. They are amazing. Because of all of this concentrated time, I think they finally got a better sense of how my husband’s cognitive abilities and memory have declined. We didn’t discuss it was we will be spending another 10 days together in August and I will bring it up then so that we can figure out a plan. I know that I am ready to get more help and would like my children to help me figure this out.

@grandmajoan I am thrilled you moved. You see - we just have to take the good with the bad in our caregiving journey. Your post gives me hope once I can get through this rental and out of storage and we find a new place. And the fact your 52-year-old twins - now how cool is that - is there and can finally see what's happening to their dad is a blessing. Another 10 days in August to plan and get more help. My Mantra: the courage and clarity to know what to do and when, (you sold your house and moved!) and God's light always shining down and helping us through. Welcome to your new apartment in Manhattan. Exciting. Best, Karla