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I wonder how everyone feels about telling your children all that you are going through. My son lives 30 to 40 min. away and will always come if I call him for help if something breaks down. Other than that I don't hear from him in weeks. The other day I invited them ( son, daughter-in-law two teenage grand kids for dinner, he neglected to tell me it wouldn't be till almost 7pm before they got here, so when I called I told him it was too late, by then my husband, who has dementia was falling asleep. The next time I invited them over, my husband was having incont stools, so I cancelled again. He said, next time we talked, it was becoming a joke as to if they would actually make it over. I e-mailed him (my son) the following day after cleaning him (my husband) up, the toilet, the floor him, his clothes, and told my son every thing I'm going through and what it's like taking care of my husband. How does everyone else feel about what I did? I know my son has his own life and issues that he needs to deal with. I guess I just expect more support from him.

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I think it's appropriate to share how things are in the home with your son. I might use it as an opportunity to discuss your husband's needs moving forward, so you can know what you can rely on. Full time caregiving a person with dementia in the home really is a huge challenge that will require more and more help. I'd explore options now, since doing it solo is quite unfeasible. If your son lives 40 minutes away, works in his own job and has a family, it's not likely, he'll be able to provide much help, but, he could be there for moral support. I sense that is hard for some adult children, because, it's painful to face the reality in these situations. Having him see it firsthand and discussing it openly might help though. For some reason, not many people seem to want to read professional literature about dementia, but, that is an excellent way for a family member to learn what the progression will look like. There is a good book called The 36 Hour Day that is designed for caregivers for people with dementia.
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I think it might be good to let him 'see' for himself what you are going through and hopefully he will help you in some way that will make things easier on you.
Hoping this works out and take care of yourself.
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Jacalyn, it sounds as though a big part of the problem is that you want to ‘entertain’ you son and his family and make it all nice for them. Then if it isn’t going to be like that, you cancel. That can’t be pleasant for them, as well as for you. Make the invitation “take us as you find us”. If it all goes well, that’s great. If it is difficult, that’s good too – they get to see what life is really like, and get some experience of helping to sort out whatever crisis they find. If Dad’s asleep, you’re exhausted and there’s no dinner ready, well that’s life!

Dropping the worst on your son and family in an email, pretty well out of the blue, could well come across as a criticism for him not knowing and not helping. Let them come, so they know and they find out how to help on the spot.
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You did the right thing! Most people have no idea whatsoever of the various issues that arise in someone with dementia and what is involved in their care.
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Jacalyn, you must tell your son, and any other child you may have about what it’s like to be a caregiver for your husband. However, sadly, there is no guarantee they will understand or even care. I hate to make a generalized statement, but it seems like people younger than 50 are only concerned with how big a house they have, how many expensive cars, spa days, their kids many activities, etc. I have two children. My son just turned 39 and my daughter is 42. I love them both to distraction. When my son is “in the mood”, he can be extremely loving,kind, generous and caring. When he’s not, he can be insulting and very blunt, bordering on nasty. Don’t expect an epiphany though. I unloaded on my son last summer and told him exactly why our house is a mess. Last week, he told me he wouldn’t bring our grandson over unless I deep-cleaned. Last Christmas, after I’d saved up money for a nice Christmas dinner, decorated the house and bought gifts, he tossed us over for spending the Holiday at his in-laws. He’s tried all year to make it up, but the damage was done. My daughter? She cares only for herself. I am here to accommodate her with babysitting, picking up my grandson from school, and anything else she wants. She has made plans and promises and has seldom carried them through.

You need to tell your child(ren) what you are going through. My kids have no idea what taking care of their disabled father involves. If they made a joke of it like your son did, they’d never get another invite. Or, I would have them spend a few hours with him, alone. Things would definitely change. I certainly cant see my daughter change her father’s dirty incontinence briefs.
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I think it's fine that you told your son what it's really like taking care of your husband. He really has no way to know and understand your situation unless you spell it out for him.

It sounds to me like you could benefit from some assistance. Can you hire someone to help with hubby? Or at least to do some cleaning, etc? Sounds like your work load is pretty high.

Best of luck.
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I think the 'kids' should be kept up to date and I also think we should have zero expectations about 'help' from them.

That way, if they choose to help, they can either ask what they can do or simply show up and help out. In fairness, I have asked very little of them and they have no idea how sick I have been.

My kids have been so disappointing in helping me with my bout of cancer. My son has just ignored me completely, and my daughters are all busy with small kids and jobs and such. They are under the VERY false illusion that their dad was helping and he has done next to nothing.

I'm far from bedridden, I'm just trying to recover from 6 months of chemo. My son expects me to show up for Thanksgiving for a week and when his dad or I say I am kind of really sick, he says "Oh, playing with the kids will be so fun for you!" Honestly, his kids won't put down their phones to talk to us.

But I do keep them up to date, so they can't say they didn't KNOW. Someday when they themselves have stuff like this to go through, they grow up and 'get it'.

And I have really good kids---I think I'm not unusual in this. Mom is ALWAYS healthy and in charge and putting everything together. They still don't 'get' how hard this has been, and how incredibly depressed I am.

Trying to learn how to take care of myself--I'm 63 and have never put myself first. It's a hard learning curve!
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againx100 Nov 2019
That's so sad that your kids didn't help you out.
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Your son don’t have a clue & you for some reason want to make him think everything is “copesthetic” or just fine. Why don’t you have your son & his family take YOU out to lunch or dinner & have Aide stay with you husband at home? Making dinner & entertaining like everything’s fine, is just crazy!!! Don’t hide what you’re going through. You need to take care of YOU!!!
💕🤗Hugs
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I'm sorry it happened like it did, but I don't think that your getting everything off your chest was a bad thing.

Your son is interested in you and does care about you, but he is not a mind-reader and not he nor anyone else can grasp what full-on caregiving is like unless somebody explains! - so now you have, and that's good. It's a new *start*.

How did son respond to your email?
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Jacalyn Nov 2019
He said, honestly I don't know what to say. That was two days ago and I haven't heard from him since.
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You are absolutely right to tell him - will it make a difference I don't know. Perhaps your son could come and stay for a few days so that he could "advise" you on coping and suggest ways he may be able to assist. A bit of psychological prodding can help get children involved, but if not you will have tried and he may understand more.
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Yes, you should absolutely tell your son what's going on. But you should not make assumptions about how much support he will give you -- it would be better if you could think about what kind of help you need on a regular basis and then ask if he is able and willing to provide it. You will need more and more help but it can't realistically all come from your son. You need a plan and maybe this should also be discussed with your son. Blessings to you and your husband!
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I have to say that I bet he is shocked by the decline and he will have to process the reality. But I guarantee that you did the right thing. Having a parent that doesn't share anything and then being called on in an emergency is just gut wrenching. You can't even prepare your head for the possibility of something big, then your eyeball deep in something that you had no idea.

Maybe they could bring takeout so it is easier for you and gives you a bit of a break, instead of more work feeding all them.

One thing I know for sure, I am willing to help if I am asked. Being told everything is fine, what do you help with?

I hope that you can get some help for caring for your husband. I am sorry that you are going through this, ask for help and be open, it will help your stress.

Hugs!
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gladimhere Nov 2019
Have son bring in take out is a great idea!
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Our son - and only child - lives over 300 miles away, and his wife has had serious medical problems for over a year. My husband's issues keep me nearly housebound. Our son practically lives at the hospital. Moral support is all we can offer each other.

Hence, I try not to lean on him a lot. But we can, and do, communicate and commiserate.
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Isthisrealyreal Nov 2019
I think moral support is soooooo important, it lets you know that you are not alone.
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I'm sorry for what you are going through. I think it's good that you told your son the full story of how hard things are now. My sister and I are sounding boards for our mom, who takes care of dad, and the entire house (inside and out). We live in Indiana and they live in TN. Maybe it's harder for boys to hear about such things, I'm not sure. We have a brother also, but mom doesn't tell him quite as much because he has mental health issues and can often "go off" with his opinions, which does not help matters.
Thank you for sharing with us. I hope your son has a little more understanding now of the meal dilemma. There is help out there for your situation. My mom will be calling her local agency on aging Monday. Bless you hun. Please take care of you.
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I agree with the others: The children have a right to be informed on what's going on with him. Even if the news is ugly, still they have the right to be informed. Being surprised at the end is not pleasant. My mom still told us what was going on with Dad, even told us the unpleasant stuff. We felt bad for him and her, but we knew what was going on.
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Absolutely your adult children should be informed of what's going on. They can't be expected to act like adults if you don't treat them like adults. And yes to the poster who said that the schedule for visits has to revolve around your husband's needs now. I hope you do get some support from your son now that he knows the situation.
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As children, we have no idea whats going on unless we r told. My brothers had no idea what my mother was going thru. So, yes, I think it was good u told son. No surprises.
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Whenever we had guests for dinner it was always at 4:00, before sundowning was full speed. It was not often, because it was so difficult, all the extra.... Next time you want to invite your son's family set a firm time that fits with hubby's routine.

Nothing wrong with telling your son what all is going on. It might help him to understand a bit better. And maybe you will get some moral support that you so badly need.

Are you trying to cater to son's needs and schedule? You can no longer do that, it is all about your hubby now. Son has to understand that and so do you.
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I don’t know if I understand your post. He isn’t a mind reader. How could he know unless you discuss it with him? Do you feel badly about telling him?

I am sorry that your husband is suffering. Hard for you and your husband to be dealing with this. How are you coping? Do you have any help? Can you contact Council on Aging to help?

How long has your husband been suffering? If you only recently told him give him a chance to process it. He is busy with his life, his wife, children, job, etc. Share your feelings and thoughts. If you have a good relationship, I am sure that he would want to know your situation.
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I don’t think it’s unreasonable to expect more support from your son. That being said, it is unreasonable to have those expectations when he wasn’t even aware of the entire situation. All that aside, he knows now. I think it’s good that you told him. He’s an adult and there’s no reason to keep it from him. Sounds like he’s a good guy, helping you when something breaks down. I’m sure he will be more understanding in the future.
‘My heart goes out to you. Hugs!
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Try lunch on a weekend.
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I’m not sure why you’d be reluctant to tell your son that there are difficulties connected to caring for his dad that you haven’t previously shared with him.

Your son can’t really be expected to offer support if he thinks life for you is moving on as it always has. Unless he has a clearer perspective on how you’re living he has no way to reasonably decide if and how much he can do to help you more.
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