What to do when loved one refuses the idea of someone coming into the home to help?

My mother utterly refused to have anyone in the house so everything fell on me 24/7. Now in a nursing home (Parkinsons, strokes and dementia), it's all my fault she's there "You dumped me in this hole, this prison" when she could have had people come in to help care for her in her home. A lifetime narcissist she's always blamed others for anything that didn't go her way, just made poor decisions and expected me or my late father to run and pick up the pieces. Now unable to sit up or stand she refuses to leave her room and every time I visit I get a verbal bashing. I pay her bills and ensure she has all she needs out of duty only. It takes me 24 hours to get over a visit and I'm done..

Have you asked your BIL to help? Specifically asked him, "Can you come over and stay with mom on Tuesday from 3p-5p?" When I was caring for my dad my brother assumed that I would ask for help if I needed it. I just assumed he should know I needed help. We didn't communicate. If you've tried this and your BIL still won't help then stop asking him, it's a lost cause.

Since your MIL has dementia you can't really expect her to understand that she needs assistance when you're gone. She's going to be mad. You can't explain to her that life is full of compromises and that if she wants to stay out of a NH then she's going to have to compromise and accept help at home on occasion. We can't reason with someone who is unreasonable.

Your only option may be to just ignore MIL's nasty mood. It's her way of getting you back. Don't try to coax her out of her mood. Don't try to be sweet to her. Don't do anything at all. Let her sit there stewing until she gets tired of it. Just work around her.

Maybe the more you use respite the more resigned to it MIL will be when she realizes that her little attempts at emotional blackmail don't work.

Oooh, good advice. Yes, we asked the bil for help. When we moved in, he said he'd help us. He recently told us dates he could have her (almost all of July), we asked for a few dates before and after that. Nothing too close to the dates, as we know how it is to pack etc... Now he says he is just too busy with his family to help us. His kids are around the same ages as my 2 youngest. He is flat out refusing to help us at all. Pretty sad that his kids have no connection to their grandmother, and she won't be around forever. Sad thing is, that his family can attend sports and school stuff, but my kids don't have us. Pretty selfish people. Can't change that. I am learning to just walk away when Mil gets upset. Today she decided she was going to clean the yard...in her slippers. I had to wake my husband to help settle her. I understand the anger, I really do, just a difficult time. Harder every day. It is even harder when she treats my kids rudely and is unkind. I am glad that I have strong kids and are a HUGE help to us.

I really don't understand the "keeping her out of a home" bit. My grandmother made our lives miserable when I was a teenager and I swore that I wouldn't let my parents or in laws do that to me, or my family. My mother gets far better care in her NH than she would get from me at home, as I work long hours and have NO patience for her anxieties over storms, politics and all the what-ifs of life. Sorry if this sounds selfish, but I'm just no good at putting up with angry people at home, especially when I'm helping them. I can tell you from experience that having a declining demanding grandma at home did nothing to build our characters, but it did open our eyes.

something else I want to add...and older woman I know (she's in her 80's now) said to me recently, "I missed so much of my grandchildren's younger years because I was so consumed in taking care of my mother...don't let that happen to you". It was SUCH good advice. Double for not missing your children's childhoods!

Instead of telling you MIL what needs to happen ask her questions about what she is experiencing. Get her to talk about her limitation and how it is impacting how she how she sees herself living. Get her to talk about her feelings and frustration with aging. Getting her to reflect on her experience and expressing frustration and leading her to make the decision that she needs that additional support instead of telling her like a child can help. A good therapist for her can help too.

If your bil has directly said he cannot help, let it go. For two weeks, go everywhere you need to go and take your mil. See if there are any advantages to that and how she reacts. If that doesn't work, tell her you are going to have the maximum outside help you can get, and you will not put up with her anger. If she is able to treat the nurse nicely when she is there, she may have more control than you think, and her anger towards you is consciously manipulative. If none of this helps, you need to start putting your family first, by placing her in a home. Allowing her to create a toxic environment in your household is not a healthy choice for you to make. It will damage everyone. My mother has lived with us for two years and my brother, always her favorite, was causing continuous problems by controlling

continuation of previous post - by not helping at all, but second guessing everything I would do, and trying to control all of us from 900 miles away. After a year of emotional chaos, I told my mother she would have to terminate all relationship with him or move out of our house. Because of her relationship with him, we had all allowed ourselves to become victims of his abusive demands. We are now completely estranged from him, and our household has become peaceful. It was hard for her in the beginning, but she realized that he was willing to sacrifice her peace of mind in order to exercise his abusive personality traits. Although the circumstances are very different, the point is that I was no longer willing to dump my family overboard because of the needs of my Mother and the bad attitude of my brother. It was the right choice. My only regret is that I waited over a year to establish this boundary.

She doesn't want to admit she really needs the service or she doesn't recognize the fact she needs the service, either way she doesn't want to lose her independence. That is what she has left and it's difficult to give up. Some people do not like having strangers in the home as that is their private space. What things does your mil like to do, what are her interests? Find a caregiver that would be able to engage your mil in those activities she enjoys. If it's a short walk, a game of cards, music or a tv show, bird watching etc. It's important that she have 'company' not a sitter, Having someone she can converse with is important. What activities at the day care does she enjoy? Have the provider to engage her in some similar activities, maybe they could go to a movie, out for ice cream, manicure, etc. Call your local or state Alzheimer's Association for activity ideas, they have a wealth of information even if your mil does not have Alzheimer's. You can also speak with the day care staff to determine what activities she really enjoys so you can offer her similar activities at home. Maybe the person you hire can 'assist' her with some light chores, sewing, scrap booking or other crafts. It's unfortunate the bil does not want to help, I see that a lot. I look at it this way: It's his loss, I know the transition you have made has not been an easy one. You deserve a commendation for your commitment to care for your mil, not everyone will do that. What you are doing, caring for your mil is one of the last things you can do for her. This is a special time, even when it doesn't feel like it, keep her talking for as long as possible, record or write down her stories; which I'm sure she has many down through the years. Last, but not least, take care of yourself. As caregivers, we often take care of every one's needs but our own. Make sure you take time our for yourself, read a chapter in a book, look at a magazine, sit on the porch, have a date night with your husband, have lunch with a friend etc. I moved in with my dad a couple years ago-so I understand what it is like to be a caregiver and not just as a professional. Good luck.

You didn't ask her first, and get her on board. You didn't give her a choice in who you selected. Inadvertently you insulted her intelligence, babified her, and took away her control of her life. You went down swinging on three strikes. The elderly cherish their independence and control. At a time when their bodies are betraying them every day, and they are forced to relinquish some of their independence and depend on others, you treated her like a child. This reinforced all her fears. Taking care of the elderly is completely different from caring for a child.

She is the parent, not a child. Go to her, apologize. Don't be defensive, you simply didn't understand. Listen, explain your concerns, and allow her control over her life. The hardest thing is to let her suffer the consequences of her decisions without blaming yourself. In the 2 and 1/2 years i have given my Dad 24/7 care, I have learned to respect his judgement, and listen to him. Good luck

Islanders5, also have the same problem. without repeating all the advice given above, I would reinforce that 1) you can't reason with your MIL. It is the dementia's fault, not hers. 2) There is a rail, so to speak, that she gets on and it is best to divert the attention to something else. It seems to help to talk about anything else that is positive. 3) It might be time for a NH

My parents (80s) were uncomfortable with someone they didn't know coming into their home. My Dad especially, since he cared for his own mother from a distance and had issues with poor help and stealing, etc. Also, hard on pride to accept help, and that needs to be handled respectfully. Mom has ALZ (now in a nice local care facility) so previously family needed someone(s) to come in and help with Mom and cleaning. [Best to get a person for each of these, if you can. Hard to care for ALZ Mom and clean.] Living in a rural/small town area, for the cleaning person, a friend of family (niece/nephew's friend) came in with my sister, so Dad got to know her and trust her before long. Based on insurance stuff, Mom-care were several different ladies from agency. Dad stayed and observed, not taking a break for himself to leave. That is what he was comfortable with. There was "slack" behavior with some (talking on cell, reading magazines, not doing Mom's exercises) so Dad discussed with sisters who interacted with the agency. [So just be prepared that you just don't get someone and done...] As the needs became greater, and family used up all their days off and then some, we did contract a part-time nurse manager, who oversaw Mom's care (schedule book with task check off list, what she ate etc.) which was a big help. Usually the process to bring in needed assistance starts after there is much stress (including family bickering to the max). If you focus on the care that is needed for your Mom, whether or not BIL helps or not - let that part go as it is only taking up emotional space, you will find someone(s) that work. Someone her age that likes the same things (cards, movies, games, etc.) as her might be good. Check with her daycare to see if someone there is available, as freelance. A face she would know, and as long as they are just sitting with her and not doing medical stuff etc. it could work for now.

well I am a weenie...I blamed the doctor! LOL. I told my mother that the doctor ordered it and we have to do it. She still fusses but she no longer refuses to allow them in (or hide when they knock on the door) at least for now, it's settled.

wantingtime, whatever works and doesn't hurt anyone.

Do NOT put your MIL's needs (demands) before your children's. It will only get worse as time goes on. If she can go to any of the sporting events, then have her go to some for your kids and some for your BIL's kids. If she can't go, then give her the option of having your BIL (or someone from his family) visit with her or have an aide visit with her. And have your MIL part of the process of picking out that aide.

My mother was adamant that no one would 'babysit' her if my sister or I couldn't be there. We, too, blamed it on the doctor, saying he required it for OUR health not her's. Then told her that the person would be her choice not our's, because that person would be for her companionship not our's. We met her for tea, and they got along famously. Mom feels comfortable sharing things with her that she doesn't want to share with my sister or I.

If your MIL opts to have BIL (or his family) visit with her while you are are sporting events, TELL him that is her choice. It must be upsetting to her that they are next door and she never sees them.

My new favorite expression in situations like this is "not my circus, not my monkey". Do what is best for you and your family. Your family being husband and kids.

I don't know how much your MIL would be able to understand, but maybe if you sat down with her and your husband and asked her about the kind of person she would want to have come sit with her. Maybe a family friend or someone from church or any social groups she had before she got sick. Maybe making her part of the decision process would help.

having someone just sit with her can make her very self conscious. what has worked for me in the past was to have a companion come in to do ostensibly light housekeeping and a little cooking. she was there helping with household things - not "babysitting" - but at the same time she was getting to know my parents in between "chores". it worked great and she eventually did less and less chores and more and more companioning - she even got close enough to assist with showers.

GREAT suggestion, DianeLisa!

Yep, wantingtime.....that "the doctor ordered it" excuse works miracles! :-)

Is it a matter of not wanting "strangers" to see her, or the feeling that you have aquired a "babysitter" to watch her while you are gone? Both these things are very upsetting to an adult. Remember, that she may be "failing", but she is still an adult regardless of the contributing problems.
I will be facing a similar dillema here shortly. My 94 yr. old Aunt will be moving in with me. She does not have dementia, or incontanence but is crippled (h&f) with arthritz, & is blind. (advanced macular degeneration) She has always been a very proud & independent woman. She is the last remaining member of her family, and my only living family member.
Nursing home not an option as she is a still practicing Christian Scientist and does not believe in materia medica. Also a vegatarian.
Please try to remember that she is your husbands Mother and treat her with respect & dignity. Hopefully her other Son (BIL) will come round and take a few hrs. of visiting her so you & your family can have some much needed time to do a few family things. But please, by all means, ASK bil, don't just expect.
Good Luck & Blessings

My mum also refuses so i simply threaten her with a home! It works? we have a carer that comes for half an hour??? smokes a cigarette then washes a few dishes then leaves yeh HUGE respite for me. Its my mums fault as she wont cooperate as this carer is supposed to make sure she showers and gets dressed. Im done arguing but this will have to change if my mum continues to refuse help then she will have to go into a home she is offered a weeks respite every 6wks and refuses to take it saying its her house and she will not leave it thats fine if she wants to stay in her own home she will have to accept outside help OR a NH i am the one keeping my mum in her own home if i wasnt here she would be dead so even though i respect my mum she is not in control of her life so we have to be tough they cannot have it ALL thier way its our lives aswell.

Similar issue, my MIL lives alone (92!) and we ( her only relatives) are 700 miles away. We've arranged for several nurses to stop by ONLY to sort out her many pills and she sicks the dog on them. She also gets free "cabbie" service for Dr's and what-not but refuses because the driver will rape her, she thinks.So yeah, let me know if you solve your issue! She won't move in with us, so it's a stand off. Also BIL sounds selfish, he can at least try a little bit! ? !

Ok, so let me clarify. We did sit her down and discuss the why's and asked what she wanted. But...being she has Dementia, she has forgotten everything we have discussed the last few weeks. She doesn't remember if she ate lunch, nonetheless that she has agreed to try this. We even set it up where they came into the home first to do paperwork and to meet the nurses. She doesn't remember. And, she has full control of all things, believe me. We still runs this home, we kept everything in the home the same and we still try to do things her way. Although we don't like her habits, and old way...we do it, because we do care. She has no hobbies, or things she enjoys. We were her highlights over the last 10 years. We visited often and my kids bring her joy. But, they need a break too. A lot of responsibility falls on them, as she tends to listen to their suggestions and they can get her to use her cane when she is being stubborn and not using it. I like the suggestion of talking to the Day Care for ideas of things to do with her. She treats the nurses like a guest, and won't let them do anything. The other issue is language. She speaks another language, along with my husband...the rest of us don't. Although she has been in USA for over 50 years, she now is having difficulty processing it. She gets upset that the rest of us don't understand. My Bil and his entire family know the language. This is one of the things that can happen with Dementia. We are doing what we can. Trying to keep her at home as long as possible. She is very healthy, besides her mind and a bad hip. A nursing home is really a place for her, because physically she is good. Of course we have good days and bad days mentally. It is a lot of changes right now because after a year, we do need respite care, and am grateful for any amount of time. When my bil does come over, he doesn't give a warning, so I can't plan to do anything. When I ask being he is around, if he can watch her for a bit, he says nope. Although he only sees her every 7 weeks or so. We are only trying to do what is right, and just looking for guidance with how to make things a little easier. I appreciate any and all feedback. Maybe after a week or 2 of things happening, and adjustments made, it will be easier. I may just have to leave and clear my mind during these times when the nurse is here and hope for the best.

A lot of really good advice here. If your BIL is refusing to be a support then forget him, he and his family will have to suffer the consequences some day when she is no longer around and they have missed being a part of her life. I suspect from what you say that your MIL is highly functional and doesn't require major help but more just watching she doesn't hurt herself or wander off. We went through the same thing with my sister only to find out the best thing is to do is introduce the companion/care giver as a friend of yours. Do some things together let them form a friendship then let the care giver call or show up by herself and say "so and so" can't make it today but I thought I would come visit, or take you to lunch or shopping or play cards or whatever. In our case they became great friends and we have no problems. At one point she had to be out of her house for repairs and stayed at the care givers overnight she preferred the care givers house to ours!!!

If she is highly functional I totally understand the reluctance to put her in a home. Fact is she will do better with people she knows and loves in familiar surroundings. The problems with residential facilities is they do not have the staff to provide the kind of attention highly functioning person needs to keep them highly functioning. Also, unfortunately when a loved one is in a facility, over time, because life happens, and because we know they are safe and being taken care of 24/7 we start visiting less and less, this is not good for the loved one and can cause them to start diminishing. Also not good for us because we start feeling guilty about not visiting. Unless they really need that specialized 24/7 care keep them close to you for as long as possible.

As far as her resistance to home care. Again ask what she wants and listen to her answer, listen to her questions and be sure you are completely addressing her concerns. When they are highly intelligent and are highly functioning they really need to feel like they are in control of the situation. One other thing we found that was helpful, she had a hard time accepting that she has a problem, we have to frequently take time to explain her disease to her. What we didn't realize was that one of her concerns was that the people that were "helping" take care of her didn't know that she had a problem, once we explained that they were fully aware and could answer her questions and assist her with whatever she needed she was fine. Because of her memory loss we have to explain this often. But the other technique that seems to work is to explain the memory loss and tell them they will not be able to remember things but they can relearn things, like how to use the telephone, tell time, or read a calendar. Then you practice with them, we have found the through repetition and calling it learning rather than memory it works. Also sometimes we can use little cheat sheets because it is learning and that is more acceptable to them.

Also it is true....do NOT neglect your family or sacrifice your memories with your family....if you MIL was not having these issues she would NOT want you to sacrifice your time with your family to "babysit" her. And also do take her with you to events whenever possible, the social interaction is great therapy! Good luck and God bless!

I lived an hour away from my mother so had to have 24/7 care for her. I had promised her that she would live out her days in her beloved home and that's what she did. Getting her to agree to a live-in was straightforward. First I told her that I couldn't be there 24/7 for her, so the other option would be a nursing home (that was out). And leaving her home alone left me open for criminal charges if anything happened to her. Since she didn't want me arrested for neglect or abuse, she agreed to a live-in (reluctantly). She was resentful at first--sullen and quiet. But as time went on the two of them got along nicely. They were together for 4 years until my mother passed away. Sometimes when my mother was kind of down or not feeling well, MaryJane (the live-in) would go lie on the bed with her and sometimes sleep in her room. They ended up laughing and enjoying each others company and MaryJane was like a member of our family. You really need to discuss the realities and options with MIL and hopefully she will begin to understand that if you get burned out, her option is a nursing home since BIL is staying out of the picture.

if some of these elderly didn't act like children, they wouldn't be treated as such perhaps.
and for others who have elderly in nursing homes, I think I would walk out of the room when they start the verbal abuse. if there is anything that has to be done, take it with you. if it has to be done there, take it with you and do it in a waiting area. either the elder gets the message, or they just are alone all the time.

two cents ¢¢

My sister and I have the same problems with our parents. She spends all week running them for their errands, doctors' appts, cooks for them, etc. I have them for the weekend. I work full time, have to go there after work to give my dad his insulin. When one of the nurses suggested that they should not be left alone at night and one of us should spend the night. My sister can't do it, I can't do it. They keep the temperature in the 80s, even in the summer and daddy is up all night because he has dementia. I need to get up at 5:00 to go to work so I could not stay with them. I spend most of the weekend with them and go home after they have been fed, etc. We suggested getting them care at night, they can afford it, but they refuse anyone coming to the house, so we are leaving it up to them. We are not going to move in with them, when they can have a professional come and spend the night. We are not selfish, but we do everything we can for them and they can get around in the apt. We live 5 minutes away and they have life alert so they can get us if they need us in an emergency. Get MIL some professional home care whether she likes it or not. She will get used to having her around.

Some really great advice...just what I was seeking! I will be putting some of this to good use. We are lucky that there are some really good programs out here helping us. I had one director tell me yesterday, not to get soooo stressed over this. They are used to these situation; probably more so then me. I will keep you posted :)

Isabella49, oh my gosh that 80 to 85 degree heat.... why do some elders keep the heat up so high? That is one reason I can't spend more than 10-15 minutes in my parents home.... it's like walking into one big hot flash.

My parents also refuse to have anyone come into the house to help them [they are 92 and 96], except for repairmen, which they hover over every second the repairman is in their home.

Any my parents refuse to get a life alert type of emergency button.... they don't want to spend the money, yet they pay yearly for a post office box that they don't need. Go figure.

kathyt1...that would work if you were dealing with a person with a sound mind. Good luck doing that with someone with late stage Alz. My mother can't be reasoned with, she simply can't understand...for example, she wants to go close down her bank accounts and keep all her cash in her purse. She can't understand that she has to keep an account for SS to be deposited in...she hides papers and money and then can't find it. I spend three to five hours a week just looking for stuff she's 'put up'...ShE spends three times that much. It's simply not an option that she has people come in....there is nothing to discuss. She is in complete denial and refuses to admit that she even has Alz. (she wants to go buy a car...to h*ll with the law! anyone could have a wreck!)