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I think you do everything reasonable for your mother; she is in no way neglected. And you are not obligated to put a strain on your marriage unnecessarily. Does your mother have a case manager/social worker who can objectively explain this to her?
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guiltridden64 Dec 2018
No, she would never agree to that. I am not even sure how I would go about arranging for one. Her doctor's only comment is that "it's amazing how well she does at 93."
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Guilt ridden, I should also add that I made decision to discharge my mother from SNF after she was there 10 months....now 1 year almost 9 months later, she’s still at home, but dementia declined a lot & she’s been combative a lot...I got injured too...she threw mouthwash in my eyes, pulls my hair, punches my boobs, scratched me. Sometimes I have to wear a bike helmet & 2 bras with extra padding just to care for her...change her diaper, etc. When she left SNF, she was on one Seroquel a day...now 2 pills twice a day...J take her to her Neurologist since 2013 & he just says it’s getting worse & to increase Seroquel....lately she doesn’t sleep at all & talks non stop to imaginary friends or enemies..
.sometimes she has arguments with them. Forget about vacations or working full time or doing things with hubby....You won’t have time or energy. My brother just comes to visit once every 1-2 months for an hour or 2. He has a life ....Everyone at SNF warned me it would get worse but I didn’t listen to them....I share hours with paid private caregiver....& set my alarm every 1am to change her diaper....

Please don’t make the mistake of becoming her caregiver as you would say goodbye to your life & hello to anger & resentment. Stick to your guns. Hugs 🤗
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guiltridden64 Dec 2018
Praying for you, CaregiverL! I am so sorry your are in this situation. Thanks for sharing.
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You are doing everything you need to do at this stage !
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You should be able to balance all. Yes your husband is important. That does not mean he needs to be first. He can be pushed back and move mom up in the ladder. You women are angels and god has given the gift of bringing the human being and caring for them in this world. It is because of mom you became an adult. Yes it is hard but take small steps. Get your husband and friends help in caring for her.
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Upstream Dec 2018
Sankarrph, Maybe you will volunteer? Sorta sounds like the "it takes a village" thing. Sure, maybe her co-workers at her job can come over and help, too, in their spare time. I'm guessing you are a man, advising us women to just "be able to balance all". An entitled mother has the ability to rake her daughter over the coals for 10 or 20 years and leave her with no husband, career, etc. Get real.
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This sounds a bit familiar. My dad is 92 with dementia. He is THE most stubborn and controlling person I know, even though he is frail. I often think about how someone that old and frail can control me like he does. He still lives in his own in his house and it was not until we hired a care manager would he allow care to come in. It took her about 6 months to talk him into it. I think he has only driven away one of them so far and we have a good assortment who are trained to care for him and deal with his stubbornness. After much prodding from others, I was awarded guardianship and conservatorship a few months back. Trouble is, he is still financially aware of all his bills but sometimes does not make the best decisions regarding his care (i.e. eats poorly, would never commit to a medical alert device, etc. because he doesn't want to spend any money although he has plenty) so someone needed to take over and make these decisions. We have allowed him to continue to keep his own checking account where he pays all of his monthly bills. He still controls all of the incoming money. I pay for the care service from the conservatorship account and can pay for things from the conservatorship account that he won't purchase himself. He has total meltdowns anytime there is an issue so I try to limit those times. This weekend was another one of those times where I cut my visit short because he would not let me set up the medical alert device and he went into a total rage. He acts like a toddler sometimes and I get tired of it. Another time it was because he would not allow me to set up a pill keeper for his medications (finally had to give up on that). As it happens, the care person that was there yesterday was able to get him set up with the medical alert. He fights me every step of the way. I have found the care people a great asset. Having a care manager has been key to assisting and she is a good go-between for me. She also takes him to appointments that I can't attend. I encourage you to look into this if your mom can afford it. I have been going to counseling for the last 4 years since I started this process with him and here are 3 things I have learned: 1) It's OK to say 'no'; 2) You have to set boundaries; 3) The needs of yourself and your family come first. These 3 things are always in my mind however, I will say that many times my husband takes a back burner to dad and I hear about it on a nearly daily basis. Between working full time, getting to the gym, and spending every Saturday afternoon with my dad, there is not much time left for my husband. You are doing the right things for her. Don't let her push you around.
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Simple - just say NO.
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You are making the right decision to live your life. I am in the exact position...mom is 90...doesn’t get along well with others..never has. She has stage 5 dementia however, apologizes after being so hard to deal with and non cooperative. She had a long term care policy but let it go years ago. She broke her hip 2 weeks ago and went to rehab...angry, lashing out at me to take her home, hoped I could live with myself someday, refused to stay in her wheelchair and fell 2 more times! Refused to sleep for 3 days...refused meds...everyone was against her, having sex in her room or mistreating her. It’s exhausting! I love my mom but it’s too much...I have to hire caregivers for her out of my pocket. She has calmed down through the miracle of meds thank goodness. Stick to your guns, you are doing a great job...boundaries are the hardest to stick to but you can do it. Take care of yourself!
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anonymous815183 Dec 2018
What do people do who don't have the cash in the bank to pay the caregivers?
I had a hard time with a parent who went demented and wore me to a frazzle. Luckily he had the wherewithal to pay a woman to do his morning care in the assisted living place. Looking back, he should have had more paid help, but i wasn't able to see it at the time. No way i could have afforded it. My siblings were either dead, dying, or weird. No help there.
I'm of the opinion many of us live longer than nature intended and I plan not to do that. I don't want to repeat what is a wasted effort in the long run, keeping going when I should be eaten by a predator and returned to nature.
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Interesting at 93 your mom still hasn’t learned to play nice. You’re doing the right thing by saying “no”. Don’t feel any guilt about it.
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My children have decided not to as well. I have caregivers and know I'll go to a facility someday. So I at least picked the facility. Tell her now while she still can at least chose where.
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Frances73 Dec 2018
I agree, I told my mom that I was able or willing to be her car giver and she needs to choose where she would move. I vetted the facilities then set up tours for her at the ones I felt could be a good fit. We visited each one, met the director, talked to residents and family we encountered, had a meal in the dining room, and ch caked out the rooms. In the end it was her choice and I think that helped make the move easier for her.
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guiltridden64 it sounds like you do plenty. And, even if you didn't have a husband, you should not resume this role, if that's not what you prefer. Your life is just as important as your mother's.
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This is a very difficult situation your in. It's not easy . You need to believe your not doing anything wrong. As you say your life and husband are your first priorities and you not only is this your right but it's your responsibility to live your own life fully. Your caring for your Mam so well and I know it's heartbreaking watching them decline and been so needy. I can relate to everything your saying y mother us the same age and has always been an angry difficult person and like your situation all my family keep well away from her. This leaves the full responsibly to myself and sister. It's not easy . As long as your Mams needs are met you have done your best. You can't full fill all your wants. I would tell her first what's happening and reassure her your not abandoning her and you've put in place for all her needs to be met. Nobody likes change and for older people it triggers fear but she will adjust and accept the situation in time. She's blessed to have a caring wonderful daughter she has in you. I hope you believe in you self and give yourself permission to stay strong and be at peace knowing you have the right to live your own life as you choose.
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Fitzgerald Dec 2018
Anamcara, what a wonderful, supportive response. You have comforted many with it, including me.
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guilt, I’m yet another here in your situation! They don’t like a person that isn’t a fit. The ones Mom turned away weren’t right for her, and for now I’ve given up. She keeps listing people she didn’t keep in her life who could’ve helped, it’s pretty sad. Your own kid is easy because you feel in control.
There are a couple great success stories above! This month I’ve got my mom moving to an independent living apt. where there are services and activities on site that she can get to herself, we’ll see how it goes. One monthly fee covers all the utilites, etc., bills I’m always paying now, and if anything breaks they have a repairman. I do the stuff you do, and can keep it up, but not the rest.
A phrase I use over and over is, “Remember you were saving money all your life? Turns out this is what it was for.”
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Imhad a grand talk with my mon, age 91, and told her it was not in my plans to be her caregiver. I told her that I had saved and planned for an active retirement that did not include being her errand girl. I explained that I wanted her in a safe, healthy home with 24/7 care givers who worked 8 hours and then left to have a life (and were much younger than my 64 years!)

She was reluctant but after staying with me for a few weeks after a hospitalization and seeing my on-the-go life, where she spent most of the day and evenings alone, she agreed to a trial stay in AL. It was a revalation, 3 meals a day, laundry, housekeeping, on-call assistance, etc. and she decided that was the life for her.

We visited several facilities before settling on one near me, her friends, and other family. It’s been 3 weeks and she is happy and healthier than I have seen her in months. She can sit in her room and watch TV or go to the common room and socialize if she wants company. And at 91 she one of the oldest and most physically active residents.

its a journey and there were moments when I felt guilty but stand your ground. One of the directors told me "now you can be the daughter again." Instead of doing chores I can sit and visit with her.
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igloo572 Dec 2018
Frances73 - you’ve brought up a really good perspective... that often our folks truly have NO IDEA of what their kids lives are like. They see us through their prism which is based in their past & that they had control over. That we actually have very full schedules within our own lives, families and work BEFORE taking time to do for them does not enter their prism.

My late mom & I lived states apart. She would come visit abt 3 times a year for 1-2.5 week sets after dad died. I’m a freelancer so I’d visit 5-6 times a year solo or with kid & hubs (working remotely) in tow. Whichever way, we did not drop everything cause she was visiting or we were visiting her and center on her. We both knew what our lives were like other than being together for an event. The visit kid & I arrived and the gas was on the stove unlit and mom was in her bedroom happily watching TV & folding clothes, I put her on waiting list at ILs. She very well knew we had full lives & I wasn’t going to become her live in caregiver. Day of the move she was frozen in fear, in tears, dramatics. Next morning I called abt 8 AM to see if she was up and remind her to her apt tag hung outside her door by 9 AM for daily staff hallway check. Day after ditto. Day 3 called...no answer, waited 15, no answer, again, no answer, it’s 9:30 AM I’m getting dressed to rush over, death scenarios running thru my brain & call one last time..... she answers totally out of breath,
me: you ok mom? I’ve been calling.....
mom: yes thought I heard the phone ringing, had to rush back to get in, have to go, the van is taking us to Steinmart.
click.
We all can learn to adapt & adjust.
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You said showing signs of dementia, this means some functions of the brain have permanent damage, and it will only decline from there. Reasoning will never work. You have to be in charge now.
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I understand. I told my Mom that it was time to help all of us by moving her to assisted living where she would have her own space and could still do the things she likes yet no cooking or cleaning or laundry to do. She would have new friends available for interaction whenever she felt like it. I really didn’t give her a choice, but found the nicest facility around. We made a list together of her requirements. Fortunately the nicest place (it’s beautiful & has wonderful staff) is the most affordable due to being state subsidized. She cried the first day so the director and I listened to her, comforted her and explained how it was necessary for all of us. One year later she is happy, has 32 friends & even a “boyfriend.” He’s so good to her.
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My husband and I bought a house with his parents, in order to take care of them. BIG MISTAKE. No wonder none of his siblings volunteered for the caregiver role. Nightmare!
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You are doing all you need to do...period...end of dilemma.

Do NOT allow your mother to bully you into doing something you have no interest in doing. She lost her marbles.
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If she can afford care then let her do it, don’t get sucked in. It will suck the life out of you and your marriage. I am there.
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Ragged Nov 2018
We are there with ya! God help us all!
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Hi Guiltridden,
i Have the exact situation with my mom. They may be twins! Lol. Seriously, I M always feeling guilty even though I know this is how she manipulates me. She WILL NOT accept help from anyone but me. Believe me I have tried. I’ve hired helpers, enlisted neighbors, begged unwilling relatives and tried to setup things she could do herself. She has sabotaged every one. She wants me. Only me. And she has clearly stated that. And she too, has said I should come to live with her. Even though I have a full time job, a husband, two adult children, hobbies, church, and life in another town an hour away. I do as you do. Run her to appointments, groceries, financial matters, clean her house, repair things, etc. I’ve done this alone for 7 years. Mom never drove. I can’t tell you how many times I’ve said you cant move in with me and I’m not coming here to live. Doesn’t matter what I say or how I say it. She is determined. Holding this boundary is exhausting and she is adding to the guilt bank every chance she gets. Oh she says she loves me and appreciates all I do for her but she will make no plans for the future and will not pay for help of any kind. She only cares about what she is “leaving her children”. When I had major surgery which they suspected was cancer (it was benign). She gave me three weeks to get better. Then she fired the person getting her groceries. After the fourth week I had to get back to helping her again. Sorry I don’t have answers but I do have sympathy for you. I have walked this path for a long time. It is abusive. Sometimes I say I’d rather take a beating. Because if I was bloodied and bruised people wouldn’t look at me and say “what a good daughter” I am.
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SueC1957 Nov 2018
I am so sad reading your post. You have plenty on your plate as it is and your mother has you locked in a death grip of guilt.

Forget about what other people think. They aren't the ones with blood, sweat and tears, trying to keep her happy.

I would start setting boundaries with your mother. You can shop on line for groceries (I did) and they deliver. One problem solved. If she doesn't like it, she can find another way to the store.

You are not respecting yourself by giving in to her every whim and you can see it in your post. It's ok to set limits with our parents. The first time you stand up to her is the hardest. It gets easier as you go on.
Please take this in the spirit in which it was intended-to free you from being consumed by guilt.
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You have a plan in place that is working. If she continues to question the purpose of that plan state to her that you are doing alot along with the very best you can but you simply cannot do anymore and that is the bottom line in this situation. You might state that she should be grateful for all you do and without that her life would not run as efficiently. And if she still complains simply state that you have a life with responsibility to others and this is how it is and perhaps tell her to imagine her life without your detailed and caring involvement. Then walk away knowing you are doing more than many others and if that is not satisfying to her than so be it.
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You're doing everything right. I hope that your family sticks together & finds an assisted living facility nearby for your mother.
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This bit: "she believes I should move in and take over her care full time."

Does she? Has she said as much? Or is it more that you think she thinks that? I'm wondering if you have actually talked about this with her.
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guiltridden64 Nov 2018
Yes, she has said as much. I have explained that I do take care of her and provide excellent caregivers, keep her finances up to date, carry her to the doctor and other appointments, and do all of her shopping and errands. I have also explained that I have a 25 hour a week job, a home, a husband, and my Church that are all important to me. She sees me as free caregiving so she does not have to pay the caregivers we currently use. In her mind, it is all about the money and what she wants to leave behind.
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Time to place her in a good home. At 93, she needs more care than you may even realize...

I know because my elderly mom lived on her own for over 20 yrs after Dad died. She had to give up driving after getting lost, driving over curbs, etc..Her nutrition got bad because she wanted potato chips and ice cream. After fighting with my older sister for over a year, we placed her in memory care. She is good there, very well cared for..now, we can go see her and actually visit with her instead of cleaning and gathering laundry and taking food. She is now 95 and physically healthy, but dementia is bad...she should have been in this home five years ago.
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You could always play her game, "mom, I have decided that I will not be taking you to any more appointments or providing any care because you refuse to respect my decisions and you continue to run off the caregivers I work hard to find, so, you want control, you now have it."

Let her stew on what that looks and feels like for a few days.

She may come to appreciate all you do for her, if not, next stop a facility.
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Dear Guilty,
That emotion (guilt) is EXACTLY what she is using to get what she wants.
Bravo for you that you put your hubs first. That's the way it should be.

Mom is throwing a tantrum (by running off caregivers). She needs to suffer the consequences of her actions. Only then will she see how important they are to her. Whatever you do, do NOT give in.

Like Tothill said, "NO" is a complete sentence. Not "I'm sorry" with a big explanation because she will use your reasons against you. "I can't." End of discussion. Walk away if she nags or whines. This is a tough love situation. You being her solo c/g is not a healthy decision. You are an adult (her peer) and should make decisions based on what is right for you and your immediate family. No parent should "guilt" their child into giving up their life to cater to them (in my opinion).

You are doing plenty for her. She will be forced to accept your decision. She is fortunate that she can afford good help. Maybe you could bring up going to a nursing home. I'll bet the c/g's would look pretty good in comparison to that.
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anonymous836119 Dec 2018
We are dealing with something very similar here. Thanks for the great advice!
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My husband hates being used as an excuse. Next time Mom says something tell her have said it before, no Mom. Continuing to ask will not change my mind. If you feel you need more care then go to an AL. There you will get help, 3 meals a day and some activities but I will not be your caregiver.
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MargaretMcKen Nov 2018
It's better for hubby if you both know it's a game. It's like ringing a debtor and saying "I hate to do this but my accountant says I have to'.
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if Mum is 93, I am sure you are between the age of 50 and 70. Why have you not disavowed your mother of her idea that you will care for her sooner?

I made it abundantly clear to my parents years ago that I would not give up my life to care for them. I will set up supports, but not provide hands on care nor financial support.

No is a complete sentence.
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JoAnn29 Nov 2018
Thats how my brother and I feel. Our responsibility is to make sure they are safe, clean and fed. But we don't have to be hands on.
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How about 'my husband won't let me, and I'm married to him not you'. She won't be as nasty to your husband as she can be to a daughter.
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Just say "NO, not going to happen.  Avoid trying to explain or justify - to some people this is an indicator that you could be pressured into changing your mind.  You are doing a great deal already, she is being selfish.
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"Mom, No".

"Mom, I absolutely cannot do that"

Or, a more modern approach:

"That's never going to happen".

Allow your brother to speak for himself.
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