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This is the question I need answered most. Why do my feelings and needs not count? My mother is living in my home with my husband and me. She needs EVERY meal fixed, laundry done, bathing assistance, help walking from room to room, multiple rides to dr. appts, wound bandage changes, commode emptying. I'm in the process of setting up CDPAP and have a friend who is a home health aid and is willing to help. "But why do you need help?, are you saying that I'm a burden? I knew you would say that." "You can leave the house any time you want." (Yes if it is important and then only for a couple hrs at most between meals.) No more weekend getaways or real vacations. She lived as a hermit, so I guess why would she think that I need time outside the home. I actually have a few friends and like to do things.


She lays in bed 20 hrs a day, comes out for meals and evenings to watch TV with us.


She ignores health problems until they become a crisis, is abnormally afraid of Drs. and treatments. Which is why she is like she is.


I am setting things up, physical therapy, CDPAP and encouraging exercise, so maybe just maybe I won't feel resentful that my life has been overtaken and I can go out without feeling guilty.


She balks at everything cuz if its not her idea its not necessary. And then my heart rate goes out of control.


Sorry for the rant.

Why can't you say "yes, Mom, it is a burden to have you here. You could help alleviate that burden by cooperating so that you're not SO much of a burden".

Honesty is the only way this is going to get fixed. She needs to go to Day programs, she needs to go to the doctor when YOU think it's important and she needs to hear that you need respite from her care.. "Otherwise mom, you'll need to make other arrangements".
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rovana Oct 23, 2019
Very much to the point. Nothing wrong in simply being honest - communication is very important.
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Rant away, wenmal. Too many people think the only person who matters is the person needing the care. WRONG!

You matter. Caregivers matter. Before I became my mom's live-in caregiver and I got POA for her finances, I did this for my two sisters, who would drop everything to care for Mom. I made it clear to my two sisters that the person needing care is HALF the equation, not the whole. The other half are the caregivers. They told me over and over what a difference it made for them that someone cared about them, while they cared for Mom's person and her home.

It's time to be firm about your needs, and hopefully your mom has a pension or other income to pay for her care and for your respite. Otherwise, be frank that she may need to go elsewhere, for YOUR health. Hugs to you, my dear.
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ReneeFrancis Oct 24, 2019
We are only young once and our time for aging is sneaking up on us! So set those boundaries and start to enjoy yourself again!
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Dear wenmal,
I write from the patients perspective. I was diagnosed with early onset ALZ 3 1/2 yrs ago and I hope you find my comments helpful. I have given this same advice to my DW and adult and minor children.
I am no longer able to work professionally any longer. I do receive SSI. I look at my job now as being in the role of doing everything I am still capable of doing. I can run errands, pick up stamps at the Post Office, shop for simple groceries, make lunches for my DW and daughter as they head off for their day. I am still able to wash dishes and put them away. I no longer cook when I am home alone while my DW and daughter are at work and school. Voluntarily I no longer drive outside of the town we live in. I'm just not comfortable venturing out on my own.
What I would recommend you do, is respectfully set limits with your mother about what you are willing and able to do. I would put an end to caving in to her every request.
Right now, your responsibility is to your DH, the two of you are entitled to share time and experience things that you would like to do while you still have the time to physically accomplish those goals. Travel, share time with friends, read a book or go to the movies. Sounds to me like it is time to move mom out and in to AL or memory care.
I have had the hard conversation with my DW and children about what I want for them. When it is time for me to go in to Memory Care, I want to be placed 100mi away from where we live. I want my DW and children to continue making their way in the world. I am 60, my DW is in her early 50's. I want it to be inconvenient for them to visit me, so they don't have to spend endless time with me who probably won't know who they are or what is going on in the world. We've had a great marriage, traveled throughout the world with our children, practiced our faith, volunteered in the community and enjoy life.
I would encourage you and your DH to set up your estate if you haven't. Prepare POA's, Medical Directives and Pour over Wills, and plans for your funerals. We were in the process of doing all of this when I was diagnosed. The legalese has been done for 3 yrs. We're going to tweak a few things with more detailed instructions on some wishes.
We enjoy everyday we have together and there is very little stress in our home. Perhaps you've done these things for yourselves, if not, please consider doing, so you can lighten the load for yourselves. I am sending up some prayers for all of you. I hope this is helpful. God Bless.
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rovana Oct 24, 2019
Thank you for this excellent post.
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I'm right there with you wenmal! So frustrating when we are sacrificing and even trying harder than our LO is, we are giving up so much and what we get in return is just the LO expecting more sacrifice on our part (and in my case, it goes unacknowledged completely, which only adds to my frustration.)

Only with MIL's last "event" have I begun to put my needs first. She broke her wrist (climbing between the lawn tractor and the little wagon it tows behind -- in a temper tantrum with two people -- had NO business doing it!) And I've realized, it's a broken wrist - not critical, not life-threatening . . . . and so I haven't simply moved heaven and earth to accommodate her as I usually do.

The doctor wanted to see her 10 days after our first appt. and he would place the cast. I only have Monday afternoon off each week, and 10 days later was going to fall on a Wednesday. So, I spoke up and asked if he would like to see her sooner, on the next Monday, or later -- on the following Monday?

He said, later . . . and all was fine.

Then when we were there yesterday and got the cast, he wanted to follow up 2 weeks later - and I have something already scheduled on that Monday afternoon, so I asked if we could come back in three weeks. And again, it was fine, and no one even batted an eyelash.

Believe you me, in the past, I would have wasted a vacation day from work to get her to that Wednesday appt. and I would have ditched my plans on the Monday and taken her for that two week follow up. But honestly, she doesn't appreciate my sacrifice -- so I'm pretty much done making them when it is not a critical need.

If I don't start to care about my feelings and needs, they will never be accounted for. And the time has come that I'm going to start taking care of myself!!
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rovana Oct 23, 2019
YES!!!
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As long as you wrap your being around her needs nothing will change, you are allowing her to overtake your life.

I would ask myself why you are doing this to yourself? Your needs don't count because you have taught her how to treat you.

Guilt is a self imposed emotion, common sense would dictate that you have nothing to feel guilty about. If you cannot stand up to her then nothing will change.

The ball is in your court...now what?
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Girl vent away! You have my empathy. I also have a selfish mother who only thinks about her own needs.

You have to make boundaries and stick to them. When she makes a comment to induce guilt, remind her that she has hijacked your life. Use your own words but push back. "Are you saying I'm a burden?" You could say "Well I had a full life of my own before you moved in and I miss it".

Get the help and get out of the house, your feelings and needs DO matter.
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Reply to ExhaustedPiper
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Wenmal, sounds like your mother is a narcissist and for these people it is ALWAYS all about them.  The rest of the people on the planet are just wall paper basically there to be used by the narcissist.  So the thing is: You don't wait for them to change - you don't ask them for permission, or to treat you nicely or anything like that.  You decide for yourself what you want to do and what you will not do - set boundaries and stick to them.  And this is going to sound harsh but you basically ignore their ranting and manipulation. Remember Sgt. Carter on the Gomer Pyle TV show?  "I don't hear you." And you don't expect much of anything of them in terms of change. Have you been looking into alternatives to having your mother in your home? Sooner or later her care will just be physically beyond you, so it makes sense to start looking now.
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Your feelings don't count because you haven't let your mother know that your feelings DO count....that you DO need help, for godsake! Ask her why on earth she thinks you DON'T need help, what with all the demands and neediness she has! Plus, she's already blaming you for something you haven't even done by saying she knew you would say she was a burden. She knows full well she IS a burden, even though those words never left your lips. Damned if you do and damned if you don't.

Give me a break.

Better yet, give YOURSELF a break and let mother dearest know what the new lay of the land looks like. That is, IF she'd like to continue living with you. Start making the new rules and sticking to them so that she isn't AS BIG a burden as you've allowed her to be thus far.

If things don't improve, get her placed in Assisted Living asap

Best of luck!
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Anita61 Oct 24, 2019
I would imagine if assessed living was affordable that would have already happened. So often we’re trapped into these arrangements because our parents haven’t planned ahead and can’t afford ou-of-pocket assistance. And then, everything falls in the family until Medicaid kicks in—but only if they’re in need of skilled nursing care. And God knows my Mom would rather die than go into a nursing home. She’s been drilling that into my head since I was (literally) 10 years old. I go back to the song “The Gambler” and “the best you can hope for is to die in your sleep.” Except I’d add “before you get too old and sick to take care of yourself.”
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Hi,

First, my husband has the same level of need as your mother. In bed 24/7 except for meals and a bit of Netflix at night. So, I totally get it. You do Everything. Pills, appointments, support stockings... Me, too.

Second, there is only one way through this: self-care. If we do not take care of ourselves, physically and emotionally, we won't live through this. Physically means working out at a gym and getting strong or at least a looooooooong walk. Also spa days! Emotionally means spending time with other people that is positive and fun.

Third, you do not need permission to leave the house. If she has a comment, respond with when you'll be back. "Why are you going out now?" "I'll be back at 5:00, sleep well."

Fourth, the easiest way to make this work is to make it a routine. My husband, though he cannot send an email or make a phone call or set the table or even get a can of beer out of the fridge, remembers our routine. So, when he looks perplexed that I am leaving, I just say, "Its Wednesday." Then the light goes on.

I also can only leave for a couple of hours, very confining. But I leave every day for a couple of hours, sometimes even twice. Breakfast, I go out, lunch, I go out again. The difference is that my husband is quite laid back about everything and sensitive to not making my life a drudge. It sounds like your mother is also sensitive to some degree. Play off of that. Let her know that you want to go out with friends, or to the gym, or whatever. Let her know that you are having fun! she is your mother! She wants you to have a good life.

One of the most helpful things that was told to me about my mom going into a RC was: "She will adjust." I believed that. And she did adjust. My husband has also adjusted--and so have I. I used to go out in the evenings but I don't dare to do that anymore.

Your mom will adjust, too. It feels awkward and oooky when she complains at first, but set up a routine to leave the house: four mornings for two hours, or three mornings for three hours, or whatever. Stick to it--even if you just sit quietly in a library. Pamper yourself. Make yourself feel loved. It really pays off.

So, you are not alone. Good luck and a hug!!!!!!!!!
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SWOMBO Oct 24, 2019
Appreciate your viewpoint - you've really got it together! I, too, have a husband who's becoming more needy all the time; and I, too, still manage to have a life without creating too many waves. This forum has been a valuable asset and has taught me a lot; and I wish you well!!
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I don't know about your parents, but my parents never "took care" of their parents.  My mom never had to play care giver while working full time and taking care of her own home and family.  I have no desire to be my mothers care giver, but I do it out of obligation.  I feel less angry about it since I sold her house and car and moved her into assisted living.  Still lots to manage, and I still do her laundry, manager her appts, buy her personables,  but it's doable.  It was not doable when she was still in her home...it just about killed me.  There is no way in hell I would have moved her in with me.  Do you have any other options for your mom...like assisted living or a daily daycare she can go to?  Think outside the box a little and don't let her guilt you into this "assumed servitude".

I have to comment on debbiesdaz response - My mom chose to have children and that does not obligate me to a life long debt to be paid to her.  I have an aunt who ran herself into the ground taking care of her parents.  People can live for years and years and years needing back breaking 24 hr care.  Everyone is not obligated to provide that to their parents because they were born!
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rovana Oct 24, 2019
I agree - if having a child would obligate the child to be parental caregiver in old age - then it seems to me what the parent is doing is not raising a child, it is birthing a kind of livestock.
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