I know I have brought this up before and I apologize for asking for advice on this same issue again, but apparently I can't figure out what to say, or do.
The answer always seems to be setting boundaries, and I understand why that is necessary, but this is getting harder for me to do because my mom keeps finding ways to interject herself in my life pretty much daily, and her dementia is making me confused as to what to do. It's not like drawing boundaries with a normal person. Anymore I often can't tell if she has a legit need I should attend to, or if it's okay to say no.
We all know that isolation in the elderly is not healthy. My mom was always a very social person (unlike me who is MUCH more introverted). She has a low tolerance for boredom, yet can't seem to independently address it herself. She has addressed this in the past with having an active social life, but now she isn't capable of forming new friendships, and only stays in touch with two friends both who live long distance. So not much there, as even conversing with her is just not "normal" anymore.
The best answer would be a care home where she could interact with peers and activities would be provided. But that's really the only reason she needs a care home right now, so she will NEVER agree to that option, and I can't force it. Or I would.
All I can think of at this juncture is to convince her to hire a companion, but I honestly don't know how to bring this up, and how to let her know I am SICK of being her ONLY source of company. It's sucking the life out of me, and has for awhile. How do I say- Mom, I get that you can't make friends anymore, but your just gonna have to sit over there by yourself because I am sick of you. Seriously, how do I without making her feel terrible, which I also don't want to do. I feel like it's cruel NOT to engage her given she can no longer make friends like normal people do, and can't really come up with ways to deal with her own boredom either.
What can I do?
13 Answers
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First
I know it's difficult, but you have to dig hard!
Going to see a therapist was the best thing I have ever done for myself!! She has taught me that my needs matter!!
I have gotten to the point that although "yes" I care about my mom and her needs matter, my needs matter too!!
Ask yourself, what is the worst thing that can happen by telling your Mom what you need?
My guess is that it can't be any worse than what you're dealing with right now!
I thought I was living between a rock and a hard place. I have learned that I put myself there!
Imagine yourself out of the equation and then ask Mom what she wants.
(((Hugs)))
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Get a 'job' and be unavailable to her from 8 am to 5 pm every day. In short order, she will be agreeable to either moving to Assisted Living or hiring a companion. You cannot be disturbed during those working hours, PERIOD. That's the first step in forcing your mother to create a life of her own or to cry uncle and admit she needs a DIFFERENT lifestyle that doesn't require usurping YOUR life in order to function.
As long as you are there FOR her amusement, why should she agree to anything else OTHER than using you for her amusement? Enabling her is disabling her.
Last but not least, any human being with dementia is in need of Assisted Living. A person doesn't have to be drooling or totally catatonic in order to 'qualify' for AL. In fact, when I moved my folks into AL, it was more for my father than my mother; she just 'went along for the ride', at least in HER mind. She wound up making a better life for herself there than she would have elsewhere. And when the time came that she 'needed' AL, it was there at her beck and call. Whether your mother agrees to AL or not is another issue for another time. Just don't kid YOURSELF that she's 'not ready' or not qualified for AL. She is.
Ask mom if SHE will help your new “household manager”, “personal assistant”, WHATEVER, help you stay organized, dust, shop, get gas in the car, do laundry.......
Don’t TELL her “assistant” is for her.
Helpful for both of you.
1. Mom interupts your life to fufill her need for socialization.
2. You are afraid that if you refuse her, there are legitimate needs that she has that will go unmet.
A. Your mom has shelter.
B. What is her source of food? Can she still prepare meals? I often see you write "I made X and I know mom likes it so I invited her to dinner". Are you in reality making sure she has enough to eat?
C. Companionship and access to "fun". This requires a conversation with mom: don't decide she needs a companion. Teĺl her "mom, I am going to be less available (due to new job, medical treatment, doctor's orders for my health, trip, whatever) and I want to make sure you have what you need. You come over here a lot; since that outlet won't be available, what do you think would be a good substitute?". You can certainly lay out possibilities, but I wouldn't decide beforehand for her.
I think it behooves you to find out what SHE sees as the solution.
I know I've commented to you on other threads so forgive me if I don't know the answer to this question (I did check your profile first) - do you have any siblings or are you an only child? ***I just saw the answer below - you do have siblings. So my question is do your siblings live in the same state or another state(s)?***
I call it an overdependent parent, a smothering parent one that may have been overprotective or the newer term "helicopter" parent and it creates enmeshment which is extremely difficult to break from - I know because I've lived it my whole life.
Was it always this way growing up or just when you became her caregiver?
As for her not agreeing to an assisted living or an in-home companion, who makes her decisions for her? You say she has dementia. That means you make her decisions and that's the end of it.
Either it's hired home companions and adult day care right now, or it's a nursing home. I know this sounds harsh, but this is how it has to be. As you've said, there is no way to set boundaries with a person that has dementia. It's not going to happen.
Then you have to make yourself a bit more unavailable. Don't take all of her calls. Instruct her companion(s) that you will call your mom several times a week to talk, but that they are not to let her call you and that they are not to call you unless it's an emergency or it's important.
You'll see if you get your mom good workers that she likes and gets along with it will do wonders for her. The only way you'll get good workers is if you hire privately. Don't use an agency. If you hire privately you can do your own back round checks and check up on their references yourself far better than any agency can. Most care agencies will hire anyone and they don't bother making sure they're good people or not because the pay is so low. Hire privately and you not only save money (always cheaper than an agency) but the worker makes usually double in pay or more than an agency charges. If you're paying $25 an hour to an agency, the worker is getting $10 an hour or less. If you're paying $20 an hour privately, the aide is getting the money directly, will do better quality work, and you're still saving.
I had a homecare client a while back who was dead set against anyone coming into her house. When I started she had moderate dementia, mobility issues, and mild incontinence. Her husband was still well off and independent. He insisted that either she work with homecare services or he would place her in a nursing home. It took a while for her to get to know me and used to the idea of someone being in the house. Then she started enjoying life again. I took her shopping, out for lunches, over to visit friends, all kinds of stuff. She had a couple of good years. If she was allowed to make the decisions herself she would not have allowed any help and would just have remained sitting on her couch all day alone while her husband was out. Please make this decision for your mom. She will be happy you did.
"No other solutions will be found if you continue to be all the solutions."
It is so short, so beautifully put.
You already know this, and know you are enabling, but you have a caregiver personality, a fix-it mentality, an insistence that it can all be made better. So you are having a hard time mplementing changes that you know are needed.
I trust you will do it; change takes time. You already are writing that you recognize what you are doing.
I guarantee you when you first gently say "I am sorry Mom, I can't be your answer to everything. I am tired and frustrated, and for my own mental well-being I have to back away and leave some solutions in your own hands; and if you cannot find the solutions then I guess we need to agree that not everything can be fixed", your Mom will be angry. She may shout (as my daughter did) "But I COUNT ON YOU. I NEED YOU. You are the ONLY ONE who can do this". I suggest you tell her what I told my daughter: "I am so sorry. I am telling you that I canNOT fix anything anymore".
She will be unhappy. So be it. Life's FULL of unhappy times we all have to fix ourselves or live with. That, in fact, along with the good stuff, IS life.
Yes, thank you, that is what I am looking for, they are good words.
Alva, do you think a person with dementia is capable of understanding what that means, and can figure it out for themselves? THAT is the part that is driving me crazy. I complain about my mom here often, too often, and plan to get her into care as soon as I can legally force the issue. But as long as she is here I truly do not want to become neglectful to legit needs that she can not solve.
I just sat here thinking, you are a bit older than my mom. Well let me tell you she couldn't write what you just wrote in a million years. She wouldn't be capable of signing up for any forum and discussing anything let alone giving rational sound advice. Yet, my mom had a full career in tech. Many capabilities just aren't there anymore.
It's fortunate that your dad agreed to hire people and welcomes the help, did he understand that he was paying for it? I'm so glad it worked out for him and in turn you. Like I said that is exactly what I want. Even once a week would be so helpful.
Also drawing boundaries when people have dementia is not the same. I can't ignore a call when it could be a legit need, you know? I even spent time this morning Googling "how to draw boundaries with narcs with dementia".... nothing. Everything out there is about drawing boundaries with narcs. But what happens when the narc is now a person with legit needs?
I guess any suggestion others put forth for you will depend on what legal authority you have and what your and your mom's financial means are. If you are her financial PoA I'd start by hiring an agency companion. You can insinuate this CG through a therapeutic fib. Does your mom like to play card or board games? Does your mom like to go out on errands or car rides? You can start by having this CG do these things with you and your mom so that she gets familiar with her. If you find a compatible person, then your mom will at least not feel like a total stranger is being interjected into her daily life. Transitions are hard enough for people with dementia, but not impossible. My 2 very elderly aunties in FL love their companion but it took a couple of misses with CGs and my aunts' realization that they just can't do everything themselves any more. Their companion performs light housekeeping, meal prep, takes them out on errands, walks with them, chats, plays cards, etc.
If you are not your mom's PoA and you are not able to convince her to assign you (or someone), then this is a much different situation. If I had the financial means I would maybe still try to ease a companion in on my own nickel but eventually would need to have my LO pay for it.
I know others on the forum will have good suggestions for you. I wish you much peace in your heart.
DH and I already put a significant chunk of money into my mom's condo paying for 75%, so I am not keen on spending any more on her. She also has her own money, and could afford to pay herself. When I called the two agencies around here that offer companion services they were both in the $25+ range per hour. So 4 hours once a week would cost her a little over $100 a day- $400 a month.
Even though she can afford it, I can almost guarantee she will say NO WAY too much money, and something like "I don't need or want that anyway".... meanwhile she gets angry when I won't relieve her boredom and loneliness.
Because of her dementia, and the fact that she has demonstrated right in front of me that she can't converse with normal people anymore in a friendship kind of way, a hired companion is the only solution I can think of.
The dementia is also the reason that maintaining boundaries is also getting difficult. Like if I try to have a day (or God forbid 2) without having to interact with her without fail she calls me with some issue. Many are legit- she's confused or can't find something, or can't get the remote to work, the list goes on, and next thing you know it's dominating my day again.
My mom is a narc, and when she first moved here in 2018 I had to figure out fast how to draw boundaries as she arrived here full of expectations that I would be her new BFF and we'd be doing almost everything together, on her narc terms. I feel like I finally got that under control with boundaries (which she wasn't happy about) but now with dementia that has progressed I feel like the old boundary setting isn't going to work anymore and I don't know how to draw boundaries with a dementia person, constantly trying to figure out what is a legit need that should not be ignored, or the old narc in her just being a narc.
Meanwhile, back with your mother. You'll have to help her make the relationships and form the connections. Join a book club. Go to lectures at the library. Sign up to taster sessions at day centres and the like. Talk to people of her age. You might meet some interesting people that way, and your presence will certainly add something to the events, and if you're really lucky your mother will make friends that she likes enough to bother to take it further independently.
Hiring a companion... you can try it if you like, but what sort of companionship do you think you'll get? She's looking for natural social interaction and you can't really package that in $/hr. Any befriending networks/services in your area, have you looked at those?
That is the reason I want her to hire a companion. Since they are being paid, all the attention is focused on my mom with her deficits in mind.
"Natural" interaction with normal people did not work, and trust me I tried.