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Mom is 86 with weakness, balance and memory issues. Doctor and home health nurse after hospital stay absolutely say she can not be alone. After finding smoke in house because she burned something in oven, I completely agree.


I have aide here four hours on weekdays. That gives me time to take the dog out, run errands, tend to most of my medical appointments, and yes, get away.


However, Mom is on a campaign to get rid of aides. She does not want a "babysitter," wants privacy, etc. Without aides, I am in house 24/7.


How have you gotten around this?

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In simplest terms possible, greet the aide at the door, take her to Mom, say I’ll be back soon, LEAVE.

If the aide isn’t able to deal with a woman with Mom’s numerous issues, TRY ANOTHER AIDE.

Be sure that the aide understands that your mom may respond to a slightly louder voice, and that she is on a “campaign to get rid of aides”.

If you are expecting this to be a brief, pleasant, easy process.........well, WE made THAT mistake, but ultimately, LO accepted with surly silence, but she was SAFE.

SAFETY is REALLY your only concern at this point, unfortunately. As much as you want Mom to be comfortable and content and relaxed by having the aide there, most likely that won’t happen, and VERY unlikely right off the bat.

It is very likely MORE IMPORTANT for your mother’s well being that she accept the aide than it is for YOU to have the freedom to leave. Her dependence on you will only become more pronounced unless you separate ASAP.

Enjoy your “self” time. You deserve it.
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CrushedLove18 Feb 2020
I agree!
I often feel tied down as my MIL lives with me and my husband. But, I make the time to do things I need and want to do. We have help and I relish the ability to relax and know that I can actually leave the house and know that my MIL is safely with someone!
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Most aides that have experience are used to dealing with this. It may help to let the aide know of things your mom likes, or once liked, topics that she could mention that might spark interest in your mom. For my dad it’s sports, cooking, and the military. He likes anyone who will listen and talk about those topics with him. But overall, your mom doesn’t have to like the aide, and here also, the aide should have a thick skin and be well versed in working where the client doesn’t want them. Whatever you do, don’t cave and get rid of the aide!
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Foleydaughter, you could tell your Mom that the Aides are there to help you [not to help Mom]. Mom may accept that reason.

My own Mom [90+] was anti-caregiver. No way, no how, nada, ziltch. No other woman was going to make dinner for my Dad. Or use her kitchen, or do light housekeeping because that was Mom's "job". It was a major struggle and Mom won. We had to wait for a serious medical situation in order for Mom to get help... Mom spent her remaining months in long-term-care. Too bad the word "stubborn" isn't a legit medical term.... [sigh].

Dad on the other hand was on the phone quickly to get those caregivers to come back to help him.
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If the doctor says that she cannot be left alone, I'd make sure that she is supervised at all times. You can try to tell your mom that it's doctor's orders and that you'll get in trouble if you don't follow his orders, but, she probably won't be able to process it. Sometimes, they may be able to let go of not wanting a caregiver in the home and other times, they obsess about it. I'd just try to get caregivers who are familiar with people who have dementia, so they can be comfortable with her and her dissatisfaction. I found that people who work in that field often have a way to work with people who have cognitive decline.. Some require a lot of friendliness, others like quiet. You just have to try different things. Sometimes, they are introduced as house cleaners.

I'd also prepare myself to hear her complaints. There is no way she can get her way on this. It's about safety and the law. She's not able to be alone, so, stick with it and eventually, she'll likely stop with those complaints. Often things phase out, as they progress with dementia. But, she may never accept the aids. I'd try to accept that and get your respite time, because, I know it can be stressful.
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I made a big deal about them cleaning and fixing her meals. I said boy its like being Queen for a day! I always refer to them as her assistant. Never caregiver.
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DH didn't accept help either. Initially, aides came in as "friends." He still gets agitated and just the other day bluntly asked "why is she here" in front of the aide. My response was that she was there for me, not him. MY peace of mind, MY help with a few house chores, etc.... and "she can assist you with lunch" or whatever. I've never called them aides or caregivers. I never tell of plans to absent myself. Going out of town overnight today actually and he will find out when I leave. I'll just tell him that I have business appointments in our previous town (true) and "Kris here will be here a few hours." Of course, after Kris comes another aide overnight, and then another in the AM till I get back late tomorrow. Couldn't work out the same person for the entire time so I did what I needed to do to get coverage. He gets annoyed with me but his attitude with aides is OK after I leave, he will even engage in short conversations, though he pretty much keeps to his bedroom or sunroom. He does tell them he's not hungry when they prepare his meals and put on his desk (I typically have everything lined up, just needs to be warmed or put together) but they know to leave there.... ten minutes later.... food is gone! Control, control..... It's a tough thing to give up after 40 years in military lol..... His attitude was so bad at first that I would dread him telling the aides he wanted them to leave, or coming home to be berated about there being nothing wrong with him and not needing help etc.... but soon found out I was concerned over nothing! None of that happened. And 18 months later he still thinks they're "friends" even though I made it plain after his last hospitalization that they were part of home health care per doctor's and VA orders...... (mine actually) End of discussion.
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my Dad was impossible to be with. He refused any help that wasn’t me. Fired aides faster than I could hire them.

a Friend of a friend was introduced to me, she was a professional caregiver between jobs.

so, I told my dad that she was coming over to help me get the house organized. She arrived and I introduced her, showed here where everything was. After about an hour I offered everyone ice tea. We three sat down together and had tea. In a short while I left on errands and they sat and chatted. The second day after chatting for a while my Dad mentioned he “never” get a to go to Walmart....so she took him. They stayed out for a couple hours and she helped me get him to bed when they came back.

that weekend my Dad was constantly looking for her. She arrived on Monday, and never stopped coming daily for the remainder of his life. She made his final time on this earth probably the most enjoyable he had ever had.

try to introduce this person in another capacity, and let them have the space to become friends.
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CrushedLove18 Feb 2020
That is what we did with my MIL. At this point she isn’t able to remember anyone’s name - except me and my husband - however I always tell her that a friend is coming to visit and help Art the house. At times I think she picks up on it because the book for the home care workers attracts her attention and she hides it sometimes... under the sofa or behind a bookcase. It doesn’t happen that much now. If she comes across it, she will attempt to read it; but, losses interest it seems soon. We had a new worker on Monday and my MIL “gave her a run for her money”! I got home and was informed by the woman that my MIL tried to bite her! Luckily this new caregiver didn’t seemed fazed by the behavior. Other things happened while I was home and I kept apologizing to the caregiver. We have now lost 4 lovely people. The majority of the time my MIL is a kind and generous woman.... now a very confused and dependent/needy child. 😕 With a streak of defiance and anxiety.
I hope your idea of introducing caregivers works for foleydaughter .
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I always found it best when Mom was resistant to something that I give her options and let her make the decision. Always make the option you want the lesser of 2 evils. Mom was in the hospital again and the Dr. recommended a PERS if she was going home. Mom wanted no part of it. I gave her an option that she either got the PERS and went home or she would need to go to a SNF.  She opted for the PERS.

 

For your mother offer the option of someone coming in to assist you for 4 hours a day or she can go to a Social Day Program or be placed in a SNF. I’ll bet the aide coming in will be her choice.
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I agree that you need to give her workable options: aides or facility? If she says facility, keeps aides until you can vet a place and get her a placement.

Don't let Mom manipulate your life. Yes, she should have options and appropriate choices. Unfortunately, privacy is no longer a choice for her.
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What exactly does "the aide" do for 4 hours? I'm only asking because if she sits and watches your mother - that would drive me bonkers too.

If she "entertains" your mother with exercising and some kind of "crafting" like coloring books or sewing cards, maybe it will go better.

Have you considered Adult DayCare? If you need 4 hours a day, perhaps that would better suit your mother as she would be with people in her own age group. And she would get a meal as well. Probably be a lot cheaper too.

My DH refused it, but it was available in our area and we're totally rural, living in a small town of 1500 people.
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Give your mother a choice between an aide or adult day care for the days or parts of days you want time to do other things. Don't let your mother take over your entire life.
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Can you put a baby monitor in her room, so aid can sit in living room and unobtrusively keep an eye on her?
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I think it makes a big difference if the person being cared for can understand the speech of the aide. In many parts of the country, caregiver agencies are mostly staffed by aides with heavy accents. And many are not necessarily great at nurturing or interpersonal skills--it's just a job they can do with lower English skills. So maybe going beyond an agency to hire someone independently.
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"Mum, you do have a three choices in this matter. Aides who come in when I need to go out. A Seniors group that you can attend, where I know you are safe, so I can go out, or AL. Staying home along is not an option and my never leaving the house is not an option. The doctor has said you are not safe at home alone and I agree."
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Sonny65 Feb 2020
Tried that with Mom but to no avail. She's turned every answer to her questions into something akin to all out tirade. I cringe when she starts out " I'm 82 y/o. I got along all this time w/o a babysitter and You sure didn't take care of all this; you hardly even come downstairs and spend any time with ME! You don't care about me at all!" then follows a 20 min bitching filled monologue. When it comes to Mom, you can't win for losing. Even her doctors gave up explaining when she's like this.
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I like the suggest of offering her two choices so that she can't say no. It's either choice A or choice B. But I also think that if you spend some time with the aide and your mother the first couple afternoons the aide shows up is a good investment. So the only yes or no question I asked mom was, "Would you like me to be here the first time "Heather" comes to the house?" She said yes, of course. The emotional side of you will want to leave right away because you or mom is paying for this time and it's supposed to be your free time. But I found that smoothing the way for a good relationship between caregiver and loved one is so important. You can be certain that the home health aide knows where everything is, what to do, and proves to be a good match for your mom. Your mom has the comfort of not being left with a total stranger right away. I did this for my mom and it worked very well. Mom saw no need for outside help, but when Heather arrived, we first sat down and chatted to find common interests. Then, I helped mom come up with a list of chores/activities that Heather could help with. After Heather left, I "debriefed" mom's experience with Heather to emphasize the positives and brainstorm other ways Heather could help. The list was posted on the refrigerator door. I did this again on Heather's next visit. After that mom was good and Heather knew specifically what to do and I was free for the whole time. It's a little like parenting a toddler. It's funny because it was my mom who taught me about that. She wisely explained that to avoid the "terrible twos" you don't give them every opportunity to say no. So, offer choice A or B. Additionally, you, the parent, must use the word "no" sparingly. That doesn't mean you say yes all the time. Instead, you might say, "Let me think about it." or "There is no time today, let's do it tomorrow." Be respectful, kind, and reasonable. In fact, my clever toddler pick up on this, so she rarely said no. If there was something she didn't want to do, she would calmly reply, "Maybe Monday!" Of course her response was so funny any chance of aggravation flew the scene right away:) The way that it's not like parenting a toddler is that your parent has lived a long independent life and most times, they are keenly aware of the fact that their independence and privacy is slipping away. To top that, you, an adult, are still their child even if you are several decades old. Put yourself in their shoes and ask yourself how you would like these concessions of illness and aging to play out. So be firm, but be understanding and loving. You are their guide now and with a little creativity and care, you can guide your mom to a place where she looks forward to outside help.
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MargaretMcKen Feb 2020
What a lovely post! Well done!
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Tell her she doesn't want babysitters, but that's what she is expecting of you. Use the aids to get out of the house and increase hours if you need to and can afford it. Tell the aids she might get ugly, but to ignore it.

Then leave the house and do what you need to do. Maybe her campaign will let up a little if it does not work
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Does your mother have a special skill? Like crocheting or something, my father carved. When I introduced the young man who was coming to take care of him for respite care I told dad that he was coming to work with him. This gave dad a purpose and time to get to know his caretaker, it worked very well and dad enjoyed it when he came over even though there wasn’t much carving done.
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I thought of another thing that helped with my LO when she was uncomfortable with new people, doctors, AL residents, staff, etc. I'd make sure to tell her how much the new people liked her. I'd say that they told me that she was such a nice person, they enjoyed talking with her and found her so friendly. And that they looked forward to seeing her again. If she felt that she had made a good impression, she was much more comfortable and eager to see them again.
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Tothill Feb 2020
That is a great tip Sunnygirl.
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Is there an adult day care or senior center that you can take her to during the day? I bring my mom to one 3 times a week. That gives me a chance to have time without her. Unfortunately for your Mom, your health comes first. If you dont care for yourself you will become angry and resentful. That's no good for anyone. I went through 5 aides before I found one that I liked, and that my mom could tolerate. So she has to deal. You may also want to find a support group for caregivers.
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Play the music genre that your mother likes. Helps to improve her mood to handle her dislike of her life's situation. I am on both sides. I have a sister that came to live with me, that is sicker than me. My daughter helps me; told me that would help my sister's depression and dementia . It also helps me.
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Fear often accompanies dementia. Fear increases with change. Change occurs in different ways. For folks with dementia, the mind is changing. Because the experience is private, we caregivers can only guess at the internal conflict, confusion and sense loss within. So, our best tools are our love, our patience, and our willingness to modify and adapt.
As caregivers, we too have fear and we too want stability and the ability to follow a plan. But because we are not (yet) experiencing the same internal horror of dementia, we adapt.
This site helps us adapt and reminds us not to lecture or blame.
For example:
LO-“I don’t want a babysitter.”
CG-“Great. Next time that I have to go, it will NOT be a babysitter that helps me.”

Then next time, make a change- try something new, adapt.
CG-“I’ll be back shortly. I left you this note on the white board.” Read the note aloud. Wave goodbye. Leave the house.

-Post the note (I use a white board, every day)
-Helper reads the note (as many times as necessary)-“Mom, I’ll be back soon. _____ (caregiver’s name) is your helper. She is not a babysitter. She’s here to help you and me. She won’t be able to leave until I get back. Her car keys are in my car. She brought a puzzle that you can help her with but she can help you brush your hair if you’d like.”

This is just one example. In this example:
-you are honoring her previous wish “no babysitters”. You’ve changed the wording to honor her dignity.
-You’ve done THE most critical aspect of caregiving, taking care of yourself regularly with respite.
-She has no choice. Someone will be with her. You’ve provided for her care the entire time you’re away because “you have her car keys”! Of course , you really don’t have her keys. But, it’s a simple solution if your Mom demands that she leave.
-You’ve giving Mom a needed sense of security in several ways. The note can be referenced throughout your absence. The “possible and optional” activities are known. The caregiver is helping you both and her name is posted for easy reference.

There will never be a perfect solution to caregiving a person with dementia. It’s always a struggle whether we are in control or handing it off for a while. One thing is certain, with love, patience, the appreciation that our LO lives with the constant companion of change/fear, we can observe, then adapt and refine our days. There is always another way.
best to all
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Daisy9 Feb 2020
Great ideas, tggator!
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My mother with Parkinson’s and sister is a paraplegic, my mother is so awful to the caregivers they literally quit within hours. She’ll text all thru the night that they’ve had no help when she called the last caregiver horrible degrading names that day and she quit.

I’ve come to understand that my mother loves to be in a crisis, it’s her drug of choice. She likes to condemn everyone that she’s alone with no help and it’s everyone else’s fault. She goes back in time how this person or that person let her down. (Interestingly she was a serial dater and never raised us, might be projecting lol)

When she chases off another caregiver she says to my sister see we are abandoned again, everyone will abandon us.
she’d prefer to have me there then strangers but it’s beyond what I can do so I don’t fall into the trap.
Im already there a lot but if I’m not careful she’ll have me in crisis with them.
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Let her physician tell her "Mom, this is the plan." The elder mindset thinks or believes that the daughter doesn't know anything, which of course is so far from the truth.
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Tell mom the aide is staying regardless of if she enjoys her company or not, though she can assist with whatever. In the meantime do what you need to for safety. Disconnect the stove/oven/toaster oven; lock them up, pull knobs, engage child safety mechanisms.
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