Well this has been an interesting few days. My daughter moved back to the area to help with my husband who is at home with dementia. He really needs full time care and nurse recommended a nursing home at this point. My only respite is my daughter comes up on Tuesday night so I can go to a friends house for two hours. She stays overnight so I can play cards at my house with friends for 2 hours on Wednesday. That is my only free time. My husband needs care with eating dressing bathing, he wets bed continually. He gets up at all hours and I am the one doing things. Yesterday I told her I am exhaused of years of doing this. He probably needs a nursing home. She went off on me like you would not believe, she said your card games are more important then my father. She used very foul language. I told her he just tested positive for TB now we need x rays, etc. I am 80 and tired. I told her there was no need to continue conversation. She hung up. So much for help.

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You are 80?
Clearly your daughter has ZERO understanding of what is going on. She may also have a lot of denial of guilt in that she is not there to help. Let her hang up, dear, because quite honestly the last thing you need is a good dollop of HER on your plate.
You already know where you are with your husband now needing care. Please see to this. When she calls can tell her that you are sorry she cannot recognize your limitations of age and strength, but they exist. That you have had to make your own decisions for a life, and you will make this one. If she has problems she should seek help as your own plate is full.
NOW then, back to real life. What does social services say about placement of your husband with the current TB? What can they provide for in home. Is he now on hospice so that you can get some help.
Please, place your dear husband as soon as you are able. This could kill you, and where then would he be. My heart grieves for you. Your girl clearly needs help with her own issues, but you honestly cannot spare the time or enegy to address that.
Helpful Answer (16)

You are under NO OBLIGATION to listen to your daughter.

If she is willing to withdraw her “help” because she disagrees with your decision, she is failing to acknowledge the seriousness of her father’s needs, and your needs as well.

Her “foul language”, hanging up on your phone conversation, and very limited contribution to your husband and yourself, indicate how little she understands what is happening in your household, and her concept of moving back to the area “to help” is not based on YOUR REALITY.

Make arrangements if you can to continue your interactions with friends, and if not, please be sure that they know that your absence is TEMPORARY .

Move forward in seeking input from his nurse, and make some calls to residential care centers near enough to you so that you’ll be able to visit as often as you want to.

If your daughter attempts to go after you again on the phone YOU be the one who hangs up.
Come back and keep us informed. We care about what’s happening to you.
Helpful Answer (14)

I think you should tell your daughter how badly out of line she was, and that she hurt your feelings. You're 80 years old, for godsake, and she's raking you over the coals for wanting a few hours to YOURSELF after killing yourself taking care of a man with advanced dementia? That's unreasonable and hopefully, now that she's calmed down, SHE knows it too. An apology is in order, and then a nice calm conversation about the next move here.

If your daughter is unwilling to apologize and talk about this in a rational fashion, then it's probably fear that's driving this irrational response you're seeing. Fear can make us do and say crazy things, you know? You can tell her to step back from the entire situation and you'll handle things yourself until and unless she's ready to act like an adult and talk things over in an appropriate fashion.

In the meantime, please DO look into placing your husband into a Memory Care Assisted Living residence. My nearly 94 y/o mother lives in one, along with 23 other residents, and she gets a beautiful level of care there 24/7. There is a team of people who work in shifts to accomplish what you alone are trying to do! And you will break down and need hospitalization YOURSELF one of these days if you're not careful. Then what? Realistically, he needs professional care and you can go see him daily once the covid restrictions lift. As it stands right now, most places allow outside visits or limited indoor visits if masks are worn and distancing is maintained. You can bring him snacks and small gifts and go back to being his wife again instead of his worn out, full time care giver.

Whatever you decide, I wish you good luck and Godspeed, dear woman. I sincerely hope your daughter comes to her senses and realizes what YOU have been going through in this whole mess. Some people can't see the forest through the trees and only look at the demented person as the one who's suffering. In reality, YOU are suffering MORE than he is, because he probably doesn't even know what's going on 1/2 the time, right? It's a tough thing to deal with, that's for sure.
Helpful Answer (11)

I’m so glad you’re keeping your time with friends, it’s incredibly important to have that time for yourself during such a stressful period of caregiving. As for your daughter, she showed her complete lack of understanding what life is like doing caregiving at the level her father requires 24/7. If she’s not willing to do a week of this completely on her own to get the full picture, she’ll never get it. Take care of yourself so you can care for your husband, if this means him living somewhere else, then this is the tough decision you have to make and not worry about justifying it to others including your daughter. You’ll still be caregiving, in an advocate role, making sure his care is good and appropriate. And you’ll be rested and better able to do just that
Helpful Answer (10)

Perhaps you can make a deal with this clueless daughter:

I'll give up my weekly visit and card games, and YOU spend that week here taking full care of your father.

She's only done Tuesday night (guessing there is very little to do, if anything, before his bed time, so it's more like baby sitting we did as teens - just be there in case of emergency) and a couple of hours for your card game, she IS clueless.

IF she can manage to do everything that needs to be done for the entire week, tell her she can have the job. She takes over, he doesn't go to NH.

Just your age alone, and the fact that he is likely bigger and heavier than you, plus all the work that needs to be done to manage a household AND a large toddler... She is way out of line there. Daddy's little girl? Blind to how much this will impact your life and health? What is her issue?

I seriously would ask her to take over ALL the work you do, household and caring for your husband, everything. See how long she lasts...

I'm younger than you but wouldn't take my mother in - there's no way I could physically care for her, can't handicap my place (can't even get someone to do all the repairs that it needs, but there's no space in bathrooms, access is full stairs which she can't do, she outweighs me and can't stand/walk without major help, nope.

I really don't care who it is, anyone who does that to you when you say you can't do it all anymore needs a reality check, but it is worse that it is your daughter. Does she really think one night and a few hours off for you makes it that much easier? What does she actually do when she is "sitting" for you? I'm betting not much - play on her phone, watch tv - does she even do anything with her dad? Help you by cleaning up kitchen or bath? Load of laundry? My bets are still on nothing, which is even sadder. She moves back to "help" and this is all she can muster?
Helpful Answer (10)

Until you have dealt with a person suffering from Dementia, you will never understand that its a 24/7 job. You are 80 and if u want to be around for a while longer, you need to get hubby the care he needs.

If you have assets and a home you may want to talk to a lawyer well versed in Medicaid. Your assets can be split. Then husbands split will be spent down then you can apply for Medicaid. You will be considered a Community Spouse and will be able to pay your bills, live in the home and have a car.
Helpful Answer (9)

In a nice way, I would have told her "No, my card games or not more important than her father but "I was as important as him."
Helpful Answer (8)
AnnReid Sep 2020
Why waste “....a nice way”? Just because we birthed a child doesn’t mean that they’re entitled to respect if they’re not willing to offer it.

Attempting to be nice when dealt with disrespectfully isn’t honest, and the basics of loving, peace, and safety aren’t being allowed on the table.

I’m ALL OUT for peaceful interaction and problem solving but I’m not at all comfortable with being made a doormat either.
I have to agree with all the other comments. Your daughter was clearly out of line.

You need help as soon as possible. Do not feel guilty or allow others to make you feel guilty. You deserve to rest. You have done more than your share of caregiving.

Of course, your husband can’t help that he is dependent on you. You wanted to care for him and have done so. It’s time to let others take over.

Your daughter loves her father but she should care about you equally. She has no right to try to make you feel inadequate or guilty for needing a well deserved break.

Who will take care of you if you collapse?

Respect goes both ways. You haven’t been disrespectful to her by needing a break. My gosh, everyone deserves a break.

She has been disrespectful to you with her uncalled comments.

I don’t know your daughter so I can’t judge her actions as typical of her character or not.

I totally agree with others that she is clueless as to what it entails to be a full time caregiver.

Is she struggling with accepting her father’s decline and possibly taking it out on you?

Did she offer to come and help or did you ask her to and she is doing it reluctantly?

Is it possible that she is taking out her frustrations in the matter out on you? Even if that is the case it doesn’t make it acceptable.

People usually don’t fully understand what is involved in caregiving until they do it themselves.

I’m sorry that you are having these issues with your daughter.

Do what my mom did when she could no longer care for my dad. She told his doctors that she was not well enough herself to care for him too. So, instead of going home after hospital visits and so on, he went straight to a rehab facility. It would have never occurred to me to tell my mom that my dad was more important than her getting rest.

I helped as much as I could. My dad was a joy to be around. Mom no longer drove so after his stroke I was the one that drove him to and from speech therapy three times a week, plus doctor appointments, along with my mom’s doctor appointments too. It’s exhausting! You are tired!

Please go play cards. Have a glass of wine if you drink. You deserve it! I am thrilled that you aren’t isolating yourself from your friends. Take care.
Helpful Answer (8)

Your daughter should have little to say about your decision to place him in a place that is staffed and equipped to handle him.
At this point you can’t “nudge” him to do any self care. Like emptying or changing an osteomyelitis bag. He need 24/7/365 attention and NO ONE can do that.
Start your search for a place that will care for him and if and when you narrow it down to 2 or 3 ask your daughter if she would like to go on a tour with you to help make the final decision. But a decision will be made with or without her approval.
Tell her that the other option is getting someone in to help CARE for him, not just “watch” him for a few hours. Compare the cost of care with a nurse or maybe you would only need a nurse a few days a week. (Not all caregivers from an agency would be able to change an osteomyelitis bag, it might depend on the regulations where you are)
Bottom line, this is your life, your husband’s your daughter is a minor player in it at this point.
Helpful Answer (8)

I want to thank everyone who posted an answer to be. It is a bit more complicated as to why my daughter cant really take him for a full day and night. He had bladder cancer and has an ostomy. Now he forgets to empty the urine bag and I have to nudge him to do so. Also each week I have to change the bag, I have been doing this for over 10 years. So without a specialty nurse coming in to change the bag, I am it. I do it gladly even though in shower he is afraid of the water. So I do a handhead and shower him, and then put the new bag on. He doesnt know "things" anymore so I need to shave him and brush his teeth, etc. My daughter would come Tuesday night take him to dinner and watch tv with him. I went out 6 to 9 p m. She would sleep over on WEdnesday and take him for a couple of hours, while my friends came to play cards. I kinda want some ordinary life. But she equates my card game as more important then her dad. Well her dad soils himself and puts the clothes in the hamper, he throws the garbage bags out every few minutes, they are empty, I have to go and get them. He goes thru the garbage in the garage and takes garbage out. He loses the tv remotes or records stuff without knowing, he doesnt know how to eat properly anymore, he takes his underwear off 2 or 3 times a day and hides them. She has no clue to my life for the last 4 years. She lived in california and was very generous with gifts and money. She came here to help. But when I tell her things, she ignores me. I told he he goes the bathroom and used towel before the soap. She would not listen. He did it at her house, she almost gagged when she picked up towel. She keeps saying she will take him, then something comes up. I feel an apology is in order. She did this when he was diagnosed, she was with me in doctor office. She said to them there was nothing wrong with her dad, he plays tennis, etc. Social worker called me the next day and said to get other help, she is in denial and not much help. Then she tells her brother who is out of state that I exaggerate things. I cant fight all of this and take care of husband. If you are not in the house 24 7 you know nothing. Friends have deserted us, money is scarce, I have to pay the bills keep up the house, it never ends. My days might start at 4 or 5 when he gets up. I cant have him roaming around. I lock spaces, and he breaks the locks, I could go on, but why bother. We are in this fight alone, all we have is this forum to vent our frustrations.
Helpful Answer (6)
Sunnydayze Sep 2020
I’m so sorry you are going through this. My dad’s family and friends had no idea about how bad his dementia was. You are absolutely right... you have to live with it for 24/7 for an extended period of time to see all the behaviors. I have no ground breaking words of advice, but he needs safety and you need to protect your own sanity and health. You have been through enough.
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