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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 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.
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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."
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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.
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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.
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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
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AnnReid I understand what you are saying, however, two wrongs do not make a right.

Besides, being nasty would only make matters worse.
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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.
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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?
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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.
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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.
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Oh no
That sounds like my daughter when my dad was needing 24 hour care.

She slowly came around when her boyfriends grandmother went into a
nursing facility.

My husband and I work different hours . It would have disrupted our lives . We couldn’t lose our jobs. We need the income. My dad was difficult and gave the aids a hard time often. He would try to walk but couldn’t. I would be up all night making sure he didn’t fall. His dementia caused him to have irregular sleep, sometimes staying up all night.
As it was it changed the structure of our lives. I visited daily, payed his bills, moved him out of his apartment, brought him food and clothes, went to hospital each time something went wrong , Doctor appointments etcccc...

Your 80, you love your husband but it can’t affect your health. Your on the road to exhaustion and illness.
It sounds like he needs a lot of help . Too much for one person .
Dont feel the least bit guilty over a nursing placement. It sounds like the best place for him.

Take those breaks , get hired or voluntary help to take more of them. Some will sleep over so you can get away a few days .
Call your county board of social Services and speak to a social worker, she will help you.

Your daughter should consider your health and well being. You can get hurt helping your husband and he could fall or not have adequate care .
The doctor sees them weekly at a facility and the nurses are on staff all day and night.

The staff at a nursing facility is trained to help people like your husband. They come in fresh every 8 hours unlike you. In the long run it can be better for him.
Please take time for you , you can get sick because your husband is not well.
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Sit your daughter down and read her the riot act. Tell her in no uncertain terms that you are honoring your marriage vows and caring for him in sickness. That includes knowing when you can no longer give him the care he needs and seeing to it that he does get it.

Your daughter is not honoring her parents. She needs to have it laid out very clearly that you are in charge here, and this is what's going to happen.

I get it -- she's scared she's losing her dad. This wake-up call may be what she needs to accept the inevitable that things won't always be the same or as easy as we'd like.
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Ask her if she's interested in moving in to provide 1/2 of the care round the clock because you are wearing out. The alternative could be a facility where others are doing the hard work and you can actually spend quality time visiting him. A couple of 2 hour breaks for you is not enough...if you say it is not enough. You know your limits. You might ask her what's going to happen if you happen to get sick in the current situation. Who will be taking care of both of you.

If there are funds available, perhaps hire someone to be there from 1-9pm. You're there in the am to get him going in the morning and you'll be home as he goes to bed.

I guess you have to consider that she hasn't been there for all the hard parts and moving him to a facility is the beginning of the end of dad for her now. She has been able to look at the situation with rose colored glasses all this time because she wasn't in the trenches with you and dad. Get her more involved if you can so she can see the reality.
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It might be a good idea to sit down with your daughter and side by side make two lists in three columns– your jobs over the week (hours in the side column) and her jobs over the week, also with side column hours. Then between you put priorities on each activity. See if you can both agree on what activities are low priority compared with looking after your DH, and what the balalnce is for low priorities for each of you. Then see if you can agree a reasonable balance for time with Dad and time for self.

The chances are that this will result in a blow up but with different rules than she has presented so far. With luck, it may result in more hired help to allow you both the time you each need.

If things are really bad, do your side of the lists, ask her to do her side, and ask for a good time to talk about how to sort it all out.
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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.
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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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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.
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First of all that's absolutely no way for an adult child to treat her 80 year old mother. Maybe, she's angry about her father's condition and can't express her anger in a more mature and appropriate why. Nevertheless, it's your responsibility to ensure that your husband receives the best care possible and I can fully understand your exhaustion since you've had this responsibility for quite a while. At this age you should not have to deal with all this stress. You should go forward with your plans to place your husband in an appropriate long term care facility. You might even tell your daughter that you need her help with researching the homes and maybe she will become more comfortable with the decision. That's really all you can do. If she loves both her parents, she'll eventually come around. Bottom line, it's your decision.
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I was going to add a comment just to say my suggestion wasn't so much to have her take over, but rather so that she has a FULL perspective of the situation. It seemed fairly obvious that she doesn't REALLY spend much time with him, at least in the care-giving sense (bathing, changing, etc.)

My comment here was going to be whether you can get her there for a full week or not (not necessarily alone with him, but being there all day every day to get the full picture), it is YOUR life and YOUR husband, so regardless how she feels about what YOU plan, it ISN'T her decision. It would be nice if she would at the least be supportive, but at this point, do what you have to do. Don't let what she says or thinks factor into what needs to be done.

Now that you have posted additional information, it is clear that not only is she clueless, but she is hiding her head in the sand! All the more reason to make YOUR plans and move forward. You don't need her approval. It would be nice to have her support, but I don't see that happening, unless she has an epiphany and sees everything that needs to be done to care for him.

NHs are more expensive than MC, so you might consider MC first, but you'll have to talk to each place you consider about what his needs are above and beyond dementia (the specific medical needs, things like bathing, shaving, regular ADLs are generally covered, even the dirty towels - they encounter this a lot!) to determine if they can take him. Check out NHs too, some do have MC wings. Compare what is covered for the monthly fee and compare care (take notes when talking with places - every one has their own plan/fee schedule. For instance, mom's MC fee covers room, board, laundry, etc and up to 1 hr of personal care - if she needs more, they charge in 1 hr increments. Sometimes we get charged for extra carpet cleaning or extra laundry.)

If money is or might be an issue, consult with EC atty. Even if you have enough money to cover your needs and his, a consult would be good to do and is usually free the first time - draft all questions first and take notes (most likely it would have to be by phone/video.)

Also given more detail from you, the situation you are in is really WAY beyond the need for a move to facility OR bringing in help! Hired help that is - most of them are not about to give you a 4-letter tongue lashing! It may take some time to find the right place, and hope it has an open room. Meanwhile, DO hire someone from an agency to help you - multiple times a week, not just for getting a few hours out and a card game! Let daughter stew in it, Although she does owe you an apology, I wouldn't hold my breath waiting for it, and I wouldn't even contact her. She should come to you, not you to her.

There are many agencies, so if you hire one and are not happy with the care provided, get rid of them and hire from another company. Regular care is usually done by CNAs, and they can likely take over much of his care for you. Changing the bag likely requires the nurse, but that is only 1x/week. So long as the CNA can watch over him, chase down the bags, keep him from harm, etc, you have more freedom to do what needs to be done in and outside the home, including having some time for YOU!

If you can find the right people to come help, you may find it works for you, BUT the option for MC and/or NH is still there, should you choose to move forward with that option. Do NOT let anything she says or does impact YOUR decision. You have to do what YOU feel is best for him AND you. Meanwhile, until you make that final decision, hire some help and give yourself a WELL EARNED BREAK!
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Your daughter moved to the area, but only comes over for a few hours a week? hmmm
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You're 80 years old and you are doing a full-time nursing job including 6 night shifts a week.

Your daughter needs to add up the hours and see if she still thinks that's a reasonable thing to demand of you. It seems that your husband's health care professionals don't.

I expect she is panicking. She doesn't want her dad's care needs to be so great that he needs a Nursing Home, and no one can blame her for that. But this is happening, no matter how she feels about it, and the reality has to be faced. Ask her to stop blaming you for his decline and face up to the reality of his 24/7 needs.

If you were to invite her to stay for 48 hours at a stretch to see for herself, might she accept?
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I'm sorry she was so non understanding, however this is probably a knee jerk reaction to not wanting to admit to what is happening to a parent she has always considered as strong and being there for her - sometimes children find it hard to accept parents have aged and have needs. Give her time to come round and forgive her outburst unreasonable though it may be - in the meantime make the arrangements you need to to get the level of care needed for your husband - you cannot care for him at all if you end up worn into the ground so if he needs to be somewhere with full time care, concentrate on the benefits you can add - if any - and accept the help and care they can provide. If your daughter is still anti when you have made your decision then take a week break, go away and leave her to look after her father - let her then decide if your needs need to be dealt with as well as his. Good luck. x
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Will a Facility even accept a TB patient ?
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I heard a saying recently that I had never heard before but can sum up your caregiving in this situation...

"I can't set myself on fire to keep him warm."

Until your daughter has done what you have day after day, year after year, her opinion is moot. Please do what you need to in order to care for yourself and your husband.
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Hi! I’m trying hard to see if there is another side to this, that could lead to a more constructive outcome. It isn’t easy, but here goes. You are 80, so your daughter must be around 50. She should still be earning her own living. What hours does she work? Does the daytime card party mean she has to take Wednesday off work? Is that becoming a problem for her?

If she moved to be closer to you, is she single and childless? Where does she live now? When did the move happen? Were there any other reasons, besides helping you with her father? Before she moved, what discussions did you have about how she was going to help?

Does she have any health or substance abuse issues – unexpected over-the-top anger can mean that something she can’t control is being messed up.

I’d think carefully about the money, and what your daughter is doing with her own life. Does she expect to be paid for helping? You say that earlier she “was very generous with gifts and money”. Where was it coming from? Has something gone badly wrong with her plans?

Something about all this doesn’t make much sense. Perhaps you need to separate the issues. One is how to manage the care for your husband. The other is to work out whether you can have a reasonable relationship with your daughter. If you sort out what your husband needs, it could take pressure off and help to resolve things with your daughter too.
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MargaretMcKen Sep 2020
Suspicious DH says ‘How about this for an explanation? She was on the game and in the drug game too. Coming up to 50, she wanted to get out of it, but the plan has gone pear shaped. At a loss to know what comes next. Can't explain.' Whether this ticks a few boxes, or is outrageously irrelevant, look after yourself anyway.
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Dont waste time on trying to make your daughter understand, if she has not got it by now, it ain’t happening. First off see if you can get him into hospice- don’t tell her, it’s none of her business. Hospice provides you with md care, services and supplies, Medicare pays for it. So sorry for you
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Sounds like your daughter doesn't have a grasp on reality - if she did, she would know that the small amount of respite she provides is not enough to recharge your batteries from the drain that caring for your husband takes. Most people who are not directly in the situation do not understand.

Perhaps you can involve your daughter in choosing a memory care facility - often people are opposed to it simply because they have heard horror stories (too many of them true, I know first hand!) and are frightened for the person in need.

That said, there is no reason for your daughter to use foul and abusive language - you deserve better!! The silent treatment of hanging up the phone is another form of abuse if it continues - it is meant to bully you into giving in.

Hold your ground. Yes, you love your husband and want to do what is best for him, and you also need to take yourself into consideration.

As POA, I had to put my best friend into a facility. We were not aware that it would happen so fast and were not given time to figure things out. It was a total disaster. A good lesson learned is that we really did have time despite hospital staff claiming otherwise. When the facility sent her back to the hospital because of their neglect, I demanded that she be moved to a facility I had toured and knew would be much better for her. She never was "happy" after that, but she did understand and come to accept that her husband was not able to care for himself much, let alone her. Her son and step-daughter were both out of town and unable to meet her needs...so I placed her in a better facility and visited every single day. I brought things like fresh hot coffee, milkshakes, and other fun things to brighten each day.

Perhaps your daughter will come around, perhaps not. The bottom line really is that you MUST do what is good for you and your husband. She is not there moment in and moment out and may not fully realize all that goes into caring for your husband. Maybe a therapist or elderly service can help her understand.

Doing what you know is best isn't always easy, but it is important. Know that you are doing the best you can do, and accept that you cannot do everything!
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Joyce, do you remember posting this?

https://www.agingcare.com/questions/problem-with-adult-kids-what-would-you-do-446762.htm?orderby=recent&page=1󯑀

Sounds like you and your daughter have been at odds over YOUR DH's care for a while now.

If the Hospice nurse says it's time for placement, please listen to her.

This is YOUR husband and YOUR life. You are driving the bus.

(((((((Hugs))))))
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My father decided to become my bedridden 24/7 caregiver almost 4 years ago.

my middle sister acts like your daughter, not to our father but to me.

3 sisters including me, middle one thinks it’s easy because she has never done it (basically refuses) she has plenty of time off, early teen daughters and a husband, zero reason why she can’t take 5 days off and take her turn to give our father a real break. I’m in for 2 weeks this time of 24:7 caregiver for her, it’s a thankless task, but a needed one to give my father a life too. My youngest sister that lives closer and has two kids under 6, pre covid comes over once week cooks them dinner, helps with errands or sits with mom so dad can.

I ask my sisters once if dad dies and mom still is “alive” would they take care of her full time? They both answered no, so I told them if they aren’t willing then they shouldnt criticize their father. That shut middle one up for while. Anytime she starts I ask her when she can come help 😈.
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