Guilt over my Mom who wants to live independently. Any advice?

Do you have Interfaith Caregivers in your area? They are volunteers that help seniors with companionship, errands, doctor appointments, etc. It might be worth looking into. Or you could contact the Department of Aging in your area for suggestions. My dad and stepmom both had dementia and lived in Assisted Living. I STILL had to hire caregivers to help. There was no "assistance" in assisted living. People with dementia usually turn inward and don't want friends or activities. They want someone to keep them company though. In my experience, it all depends on how you "present" things. Basically, you just do it and hope it works. If you ask for "permission" they will fight you. I hope this makes sense?!

Doesn't this really make you re-think about getting old?

My Mom is very lonely also. Her friends are all dead and the people who call her, she doesn't consider friends. She finds it hard to hold the phone or listen to anything they say. She cannot read because she cannot remember enough to understand the plot line. She cannot watch television because she cannot read fast enough and cannot hear distinctly, much the less put together the plot line. She doesn't get jokes unless they are one-liners. When she goes out, she cannot hear well, however, she can read a menu if it is block print and make certain decisions about food.

I moved her into memory care because "I could no longer take care of her". She was occasionally belligerent, argumentative, lying and most of all, the complaints were never ending. I hated the fact that the caregiving agency could not find replacements for a sick caregiver. In addition, she saw that I had other work to do, other than her and I wouldn't allow her to interrupt it.

My Mom gripes that she has been in Memory Care for months and has no friends except the caregivers who work there. She is correct as friendship is a 2-way street and the people in Memory Care, in general, are not able to nurture and keep a relationship. However, I can't tell her that. She wouldn't understand nor care.

However, at least she has caregivers who will talk to her. Caregivers that will listen to her and other people there that make her don't feel totally isolated and alone.

I don't feel guilty for putting my Mom in Memory Care. She has 24 x 7 ability to interact with people, instead of a moody daughter who constantly has high priority items in her life. I don't know about your social life, however, as mean as it seems, when you are with your Mom, you need to keep up that social life, whether it be phone calls, texting, Facebook, etc. Show her that you are NOT constantly available to her. Show her that you do have other things in your life that require your attention besides caring for her. I used to conduct business in the car, while I was ferrying my Mother from one place to another. A lot of the business had to do with her, however, she didn't catch on to that. She just knew I was a busy lady.

I think that once your Mom realizes that you don't have infinite amount of time for her, the other living alternatives will begin to look much better and she will begin to consider the alternatives.

P.S. It is okay to be the eating and medicine police. Try and be an exercise police too. You really want to make her think that she might be better off with other people helping her, other than you. Don't expect her to be positive. However, you can turn that around and point out that if she had other people around her, they could help her do xxx. No one could give my mother massages except the caregivers. No caregiver, no massage. By doing this, caregivers could give her something that she couldn't have otherwise.

P.P.S About the food: My Mom will NOT eat food alone. There has to be someone there to eat with her.

PennyBob: Without question, your mother, who suffers from stage 4 dementia, can NO LONGER live independently. She requires residence in a managed care facility, probably memory care. Quite honestly, she should have been living in a facility yesterday. I am glad to hear that she does not cook/operate a stove or microwave since anyone with dementia has, sadly, lost that ability. Hugs going out to you for this most difficult time in your mother's life.

Of course we all know every situation is different and what works for one doesn't work for another. My mom is in the mid-range of dementia, and still living on her own. My brother, sister and I had a meeting with our mom a couple years ago, so she could let us know what her wishes were before she gets too bad to be able to tell us. Of course her main wish is to stay at home as long as she can. The four of us have had meetings periodically over the last couple of years as something arises. About a year ago we broached the subject of a caregiver in the home for a few hours a day a couple times a week, and she was dead set against it. We've been trying to respect her wishes as much as we can as long as it is safe to do so. We brought up the subject of a caregiver again about 6 months ago, but we put it more in the lines of companionship and someone to do some light housekeeping. We also assured her if she didn't click with the person we would try someone else. We finally got her agreement. The first company we tried didn't work out due to staffing issues. We tried a another caregiver with another company. We all feel so very lucky-my mom really likes her caregiver and says she could be her best friend.
My brother, sister and I acknowledge that there is going to come a time when respecting my mom's wishes will be in conflict with keeping her safe and healthy, but we feel fortunate that for the most part we've been able to do so.
Best of luck to you.

Let me share something that I learned in a pain management class: the words you use to describe a sensation further refine and reinforce some aspect of the sensation.

What you are now experiencing is not really "guilt." To be guilty you must have done something wrong. You have not done anything wrong. You are not guilty. You do feel really sad about your mother's condition and you feel regretful that you are unable to do anything to make her back into the mother that you have always loved. Try to think of your feelings about your mother as sad and regretful rather than guilty.

Remind yourself that you have done nothing wrong and that her condition(s) are not of your making. You have done what you can do. A decision to change her behavior or her reactions to her situation is not within your power. If you can manage to change your attitude toward the situation you may be able to face it with a bit more cheerfulness.

Congratulations for doing all you can up to this point. Please take care of yourself. Also know that many others share your pain in losing the mother you once knew and having to cope with this different person.

It does seem to be a small thing to simply change the words we use to describe our experience, but try it, please. You may be surprised at what a difference it can make. You owe it to yourself to do the best you can for your own well-being while trying to ease your mother's final years. Be sure to take the time to treat yourself to your own pleasures in life. Don't feel "guilty" about taking time for yourself. Feel "entitled" or "self-reliant" or "responsible" about taking care of yourself as well as your mother. Always remind yourself that if you do not keep yourself mentally and emotionally healthy that you will have nothing to give to your mother.

Good luck and hugs.

My mother lived with my father in senior living. She had vascular dementia and was very mean to my father even threatening him with harm. He had a serious neurological disease. I knew that he could not take much more so I moved him in with me and mother into memory care. I didn't tell her where we were going just that it was a place that would make her feel better. Yes, I know I am a terrible person. Anyway, she tried to escape at first but in a few days calmed down. My poor father had tears in his eyes as I took her away, but lived for over three more years and she about two. Sometimes you have to be the one making decisions.

Can your Mom afford part time Caregiver? How old is she? Could you interview & then (on the sly) bring over a gal to meet your Mom. Let her step in & help your Mom w/a few things...say "Hey Mom, she has a couple hrs this week to be here to help you with some tasks." My Mom won't allow this yet. But would yours? I read your post w/o my cheater glasses on from my phone, and questioned for a minute if I had written it! So much is similar, but my Mom has NPD & Borderline + Early Onset. My Mom would be a terror to live with, as demonstrated with my Dad who passed in January (he was a Saint to stay with her) & a Niece & her 11 yr old Son who lived with them for a decade. My Mom is a fighter. Not happy unless she is fighting verbally. Not a sweet Mom-G-Ma. Lives in one of the most Beautiful areas in Southern California & doesn't appreciate it. Can you...have food on hand that does not need to be microwaved. Deli Meats + Cheese..precut fruit, yogurt...cottage cheese.. etc.... Our Moms could be twins. Wish they lived next door to each other so they could commiserate together.. My Mom is still an avid reader ..but only watches TV & ..reads. Complains all the day long. I keep my once a day phone convos short when she goes into complaining-nasty mode.. but get off w/i 30 mins. Nothing to talk about. I share newsworthy info. Literally national/international world news. How close do you live? How often do you go over? I go twice a month. 2 1/4 hr drive up.. I stay for 4-5 hrs... I read all the comments below. Unless you have a Mom who has a difficult personality-refuses help...you just ..don't get it.. Until she accepts help and participates in her own "rescue"...you are not her savior. Obvi do your best..but release. Elderly people need to dig deep when they can. Be kind to family members & make it easier on their grown Kids and G-Kids. My Mom's Doc feels wayyy more the manipulation tactics....the "poor me" than her inability to do more for herself. I tell her "if you stay indoors all day, do you really feel you will make friends this way?!" I know a lot of it is fear on their part, but...enough is enough. Your Mom is Stage 4. I'd bring a gal over....stealthily. I bet your Mom would warm up to her..& some help..

I'm reading some of the comments and its true about some of the questions. how do u know she has Dementia? if she, does i'm not sure y a doctor didn't assign her a social worker, therapist or tell u she cannot live alone. u did mentioned she didn't want home care. did the dr. request that? she needs a full blood work up, mri etc.

sometimes medication does more harm than good. I'm sorry, that's my opinion.

I'm not a dr. however, i believe taking her to seek mental therapy will not hurt. i would get mom a assistant anyway. make sure u have cameras in the house. I would do all i can to help her before sending her off. Its possible she could live alone if she gets help. later u probably can once a week take her out on outings. maybe to a park where children are at sometimes holding a kid or seeing them openings up their minds. u could also , maybe check out an adult day care to meet ppl laugh and talk and go back home. give lots of hugs and kisses. i know u or we did not asked to be here in this world but she we took care of u guys till the end. it goes both ways. don't give up on mom. At least do ur best so u won't feel guilty. I'm praying u and mom can have a day to go out. if u get cameras or ipad or what have u she can see u or u can see her and communicate. ask her want she wants and need. God Bless!

First, do you have a Durable Power of Attorney? If not that is the first thing you need to do. If you mom is still "with it" enough you may contact an Elder Care Lawyer and he can do the paperwork and let her sign. You will probably have to come up with a good story like, if we don't do this the government will get all of your money or something that will convince her, otherwise if she doesn't have enough sound mind you will have to go through the courts which is a longer process. Second, instead of memory care unit try Assisted Living which is normally much more active and engaging. Another option is you could move in with her with the stipulation that she be willing to have in house care when you are living your life, working, going on outings or whatever. Maybe that would be a good compromise.

I wish I had some advice for you but I want you to know this sounds very familiar to what my family is going through. And I feel the same guilt you are feeling. Just hearing that someone else is struggling with these feelings, is helpful because I can’t help but feel I’m letting her down. My mom does not (yet) have dementia but suffer from ‘mild cognitive impairment’ which means, in her case, she has NO short term memory but other parts of her brain are still functioning. We are moving her in with my brother and his family in the next few weeks and she doesn’t want to move and asks, any time we talk about it, why we can’t move in w her but like you, does not want outside assistance. Starting from scratch and seeing her frustration many times each day is exhausting. Praying this move will help and that she doesn’t ask every 5 minutes to go ‘home’.
Best of luck.

Mom should not be living alone.
Mom does not have the mental capacity to make decision for herself.
If you are POA YOU are the one that needs to make decisions for her that will keep her safe.
If Memory Care is not an option then 24/7 caregivers would be the other solution.
It does not matter what she "wants" it is what she needs.
You say she doesn't cook. What about the morning she wakes up and decides that she does want to cook? What about the evening she decides to go for a walk...and does not know how to get back home? What about the battery that needs changing or the bulb that is burned out and she falls from a chair or ladder...when would you find her? (although this could happen with or without dementia)
Since she has dementia you don't have to wait for things to fall apart before you make a decision. If she did not have a diagnosis and were legally able to make decisions then yes you have to wait until something forces a change.

Dear PennyBob. I'm sorry to read about this super difficult stage of dementia. It is so so hard to care deeply for your mom and not get entangled in her dementia. I'm glad to read you have friends and activities to keep you connected to a healthy community.

I imagine all the things you're seeing in your mom are painful reminders of the loss you're both experiencing. I wish I could relieve you of your guilty feelings. It looks like you are doing everything possible. Maybe tomorrow you won't be able to do as much. Maybe tomorrow you'll be able to do a little more. Today, you can only do your best. And guess what? That's enough.

If you can afford one (check with Medicare if your mom has it), you might consider hiring a "helper" who can spend time with your mom at home and help with care duties, like meals and meds. (This may have already been suggested.) If you introduce the hired caregiver as your "friend" who is visiting with you, it could aid in your mom's reception.

We, my Pop and I, have our first interview with an in-home certified caregiver this week. We're starting with just four hours a week. Her fees are $30/Hr.

My mom (who is in her 4th year of dementia) will help us decide what we do, but will not be the decision maker.

God bless your good heart, PennyBob.

I would find a great assisted living and make an appointment for her to visit with you. My mom was not thrilled at all but now “loves” her friends and the help. She is rarely bored or lonely…eating better and attending in house activities. No one wakes up and says…yay I am going to a facility…Good Luck!

Is there an Adult Day Care available locally? My mother was against AL or ADC but was finally talked into trying ADC. She liked it: riding on the bus to get there and seeing others for a few hours and riding the bus home again. I also think the experience of attending ADC as provided by a local AL/MC gave her a more open mind and relieved a lot of her fears about moving into the MC.

If she is Stage 4 and you have POA, you need to place her immediately. What she WANTS is irrelevant. She needs to be someplace safe and looked after 24/7 and that is more than just one person can do. She requires more help than you can give so why do you feel guilty? You didn't do anything wrong.

My concern is her medication and safety. My mom has started more frequently missing doses of her meds. The last time was 3 days missed and she ended up in the hospital for a week and now is in rehab due to being so weak. She had PT sitters before but now everyday will be covered 8 hours mainly until she has regained some strength but for the medication prompting.

At the beginning she and daddy did not want strangers in the house. We started by saying it was just for housekeeping & laundry. They got used to their presence and now mom loves her ladies.

The caregivers do a variety of things mom enjoys especially getting her outside where she visits with her neighbors. It brings a better quality of life.

PennyBob, when she was talking about ordering groceries on her own, was it in response to some change you proposed, or did it come out of the blue?

"I hate to see her fail".

That little ending to your reply really stands out to me.

We let our children 'fail' from time to time, in small safe doses, to allow thinking, decision making & judgement skills to grow.

What would be the result of allowing your Mom to 'fail' now? She could dint her pride, but so much more... Lose self-esteem, lose trust in people, get confused & increased anxiety/fear.

"Set someone up to SUCCEED with their task!

Don't set them up to fail".

I think it was an OT who told me that?

Eg Helping plan the shopping list with you (success) - ordering alone (possible fail).

This concept underpins living arrangements & even place. Living alone, dependently (failing with cooking, shopping, cleaning) VS living with supported accommodation where these tasks are provided (success with feeding oneself, choosing menu items, arranging room items).

Does this make sense?

I think your little sentence is a winner! It can guide you well 😊

If you have POA for your mother, you need to place her in a Memory Care Assisted Living Facility whether she 'wants' to go there or not, and she'll be safe and cared for 24/7 by qualified caregivers. She'll be fed, her meds will be administered to her, she'll be bathed, and she'll have no decisions to make. That's how it has to be for an elder with this level of dementia at play. It's not safe for her to be living alone, and she's not capable of following instructions you give her, or using the microwave, etc. Of course she's 'not as sharp as she used to be'..........she has stage 4 dementia! She's in denial, as most of the elders with dementia are, and will never admit there's a problem going on. What you need to do is to take the bull by the horns (if you have POA) and place her; sell her house to finance the costs, and let the chips fall where they may. If there's a 'royal battle', so be it. The staff at the Memory Care can guide you accordingly; this is not their first resident who's being sent their against their wishes. Trust me on that.

My mother did not want to live in Memory Care either, but she had no choice. I had to move her there from regular Assisted Living when her mobility issues along with moderate dementia became too much for the AL to handle. She insisted there was 'nothing wrong with her' but there was. She was not capable of managing her apartment any longer in AL, so there was no other choice BUT to move her to a shrunken down world where there'd be no decisions for her to make anymore. She wasn't best pleased about it, but that's life for an elder with dementia that's advancing. A no - win situation for ALL concerned.

Wishing you the best of luck getting your mother placed now, before an accident happens.

I can see what you are going through, I was in the same situation and the way I got out was to tell my husband this is it, I took care of you dad so now its up to your sister to take care of your mom. The sister is a nurse and she doesnt even know how to handle the situation, what a joke she is. I am just the daughter inlaw and I had to care for both of them until my father inlaw passed in Jan. I put my orders down and told my sister inlaw and mother inlaw, this is it no more. There is no way out of any alzheimers or diemensia persons. So, all you have to do is look the other way and know that you are all it counts right now. I know its hard but, you just have to care for you cause no one will.

PennyBob, I'm moving this further information from the psychiatrist up here:

"Totally denies depression, but yes she is depressed. We are giving her medication for it, but I don’t think it’s working. We’ve had the work up done by geriatric psychiatrist. He pegged her as a controlling, manipulative little thing. We have gone over her results with her several times. She refuses to acknowledge. I feel sorry for her. She’s totally screwed if something happens to me. It’s a helpless feeling."

You don't get ant results by going over a psych report with a dementia patient.

She is not going to change her behavior. However, if YOU change YOUR behavior, something will change.

Your mother seems to have your cornered.

If you leave that corner, will she simply stop eating and drinking and taking meds?

Perhaps.

Thn she can be hospitalized for self-neglect, declared incompetent and placed.

That might be a good change.

Here's a quick way to stop the guilt. Are you the only family member? If you have siblings, what do they do? Are you the one who does all the caregiving? If there are others and they leave it all up to you, you have nothing to feel guilty about.

And even if you ARE the only family member left, you STILL have nothing to feel guilty about.

How was she diagnosed as having “Stage 4 Dementia”?

If that diagnosis is legitimate, it means that she does require “management” to be safe and live whatever should be her “best” life.

”Dementia” is comparable to “pregnant”. You either HAVE IT, or YOU DON’T.

Either way, as her “child”, you may all or partly responsible for her physical welfare. But you ARE NOT, and CANNOT BE responsible for how she FEELS about what you do or do not do on her behalf.

“Dementia” MEANS that neither her logical thinking brain NOR her emotional feeling brain are working correctly, and dementia, THE ILLNESS, is PROGRESSIVE and UNTREATABLE.

What she wants, what she expects, what she likes or doesn’t like, what she thinks about her own circumstances, ARE NOT YOUR RESPONSIBILITY OR BURDEN, and you cannot allow your guilt to be what motivates your decision making.

If, as you pursue safe, humane, and ESSENTIAL CARE for her, she has tantrums, cries, acts clingy or “more dependent” on you, HER behaviors will do nothing but make YOUR efforts harder.

I have had to place TWO women who had been the center of my life since my birth. The hardest part of that process FOR ME, was realizing that the people I had loved and been cared for and trusted WERE GONE, and that those two people needed ME to care for THEM.

Do your research. Find out what services, care settings and geriatric resources are available to you, then pick those that will work best for her and for you AND USE THEM.

AND THAT IS ALL YO CAN DO. If she acts in a way that is so distressing and disturbing to you that pushes you beyond YOUR TOLERANCE, GET HELP FOR YOURSELF, and stick with it until you are able to see yourself as being able to do the best you can, but NO MORE THAN YOUR BEST.

In geriatric management there are often NO GOOD CHOICES, and it becomes your job to choose “the best of the worst”. DO THAT.

Finally, use her financial resources, if you can access them, to do for her what she needs. Find out. Do NOT “quit everything”. You are an independent human and a caregiver, and her decisions about your life are clouded by dementia, and should NOT be accepted by you as doing a good thing for either of you.

Do the research and know how to get what she needs without sacrificing yourself. If you can do that, this situation CAN get better for you both.

Tough position to be in.

Can your Mother self-care without you? Preheat or order meals, order groceries? Take pre-packaged meds correctly? Maintain hygiene/dressing?

If not, she is no longer indepepdant. She is living alone, dependantly.

Therefore will need a different living arrangement sooner rather than later. Either adding in-home aides to supervise, prompt or assist ADLs or move into supported living.

The problem of lack of insight into her own needs (due to either cognitive changes, depression or both) is a common one. Also apathy (again, cognitive ie loss of planning skills or depression).

So much easier to stay sitting in your chair saying no, right?

Does Mom have a trusted Doctor to talk over her situation with? Sometimes a "It's time to move" chat from a professional helps.

At present you are holding her house of cards up.

Get your ducks in a row before you lower this house down & arrange the type she needs going forward.

My mother is basically the same. She’s in a nursing home now but she calls us all the time wanting us to come see her or something

You don't mention how old she is and if she suffers from any illnesses.

Its really not your responsibility to entertain her. If she is lonely and can afford it an Assisted Living may be the place for her. Sounds like there may be some depression. I would get her a good physical. Labs will be taken to see how her numbers look. She could have low potassium, Thyroid problems, etc.

No one can make anyone else happy. Your mother refuses help; doesn't initiate phone calls. She is responsible for her own happiness.