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Periodic Contributor

The end is near???

 

This is a long read. Sorry.


My 90 year old mom seems to gradually be fading away.

I don't know how to cope or handle the changes or change in general.


I'm 40, been living with my foster mom since 11. When I came she was in her 60s very active and alive. Always working, cooking, participating in outdoor activities, always going somewhere, always hosting holiday dinner, watching grands, going to the gym to exercise, etc ... She lived an active full life.


Several years back we took in another foster child who was the same age as me when we took her in...we had to give her up at 16 when she just refused to listen, go to school, come home, etc... When she left the decline and toll it took in my mom began to become prevalent.

 

My mom stopped working, and leading the active lifestyle she had previously lead.


October 2018 my mom was hospitalized and almost lost due to what doctors felt was an epileptic seizure.


Although she recovered, her memory was permanently affected.


Since New years eve of 2022 up untill now, she has been hospitalized on and off about 4 times already. Twice she spent 6 days in the hospital.


The doctors believed it to be a "mini" stroke and also diagnosed her with an aphasia disorder.

While she was having these mini stroke episodes each time her language was garbled and distorted. She would often repeat phrases, she wasn't able to properly communicate with me. She could not formulate complete thoughts or sentences.

 

So far since the start of this month (Feb) she has not needed hospitalization.


The hospitalization took a major toll on her.
She frequently is extremely tired, fatigued, and her memory has further decreased, her communicative skills have improved but sometimes the aphasia comes and goes.


I have remained living with her throughout the years, still currently live with her ..I am her caregiver.

 

She has 4 son's and family that don't do much for her, except occasionally take her to appointments, and call her. They have distanced themselves from her in the passing years.. It wasn't like this when I first arrived. The family unit was strong and united..

Ever since she has gotten older, and stopped hosting holiday meals, they have tapered off.

Our house is slowly falling apart.
We have been after her son's for months about major house repairs, but they have yet to complete it.

They give the excuse of being "too busy", but yet they have very active social lives.

My mom has always been an enabler and constantly coddles them and makes excuses for their behaviors and actions.

Ever since I arrived, I haven't been apart of their family. They have always shown disinterest in me as a person. All of them have always been super fixated focused on and joyous about the fact that I have always been here to help and take care of their mother.


They have always bragged about this to everyone. In all the years I've been here, all or most of the conversations we have are transactional and of a business nature. "Open up the door.", "Tell my mother this and that ", "what type of medication is she on", "who are her doctors", "How is she today?" , Etc...

 

They all don't even know anything about me, never bothered to ask. They don't even know my birthday, my last name, my age, etc...

None of them have ever spoken to me, they speak at me.. mom included.

When my daughter of fur passed on almost 2 years ago (tragic horrific story in which I was blamed. I was the only one concerned about her health, everyone ignored me and her and our pleas for a month..up untill that day ).. no one consoled me...they consoled mom, always constantly calling her. Extending condolences to her, etc...

 

My mom has always verbally abused me insulting and offending me often. She still does off and on.

She's never trusted me and has never given me any credibility or believed me and only me about anything.

When she doesn't understand me or doesn't agree with my opinions... it's her often telling me that she can see why my biological family didn't want me, that she can see why I don't have friends or a husband..... She labels me as "difficult" and saids a husband would kill me..smh.

When the handyman use to come and do work ..he was highly inappropriate with me and would say sexually explicit things to me. Along with our currently flirtatious exterminator. I told her about these things, and she has basically said that I should make myself scarce because she was still hiring them.

She has never been this way with any family nor strangers. It's just me.

Her son's have also been verbally abusive and have been very manipulative in order to get their way.

They have also vaccine shamed and bullied me. I have health and mental problems. I have a bad heart condition that makes everything very difficult for me to accomplish. I am permanently unemployed for the remainder of my life.

My doctor highly advised not to recieve the shots because of my health problems.I told them.

They all threatened to kick me out, and told me that if I didn't get the shot that I would be killing their mother. That her death would be because of me and how I wouldn't want that on my conscious. My mom would argue with me basically saying that I should get the shot for her..and I must not care about her if I didn't get it. I told her what her children said to me, and she didn't see anything wrong with it.

Against my better judgement, I got the shot and have had adverse reactions and side effects since.

My days are generally spent in silence and alone unless my mom asks me something or wants something.

This has always been though.

The previous home that I was in treated me terribly too. They abused me every single day, multiple times a day during my 2 year stay..and they never were bothered with me. They made me watch their two biological kids (2, 3) all day while they stayed holed up in their room together.

Present day, mom sometimes gets paranoid and goes on rants about how I'm not giving her the correct medication,(her medication has changed since arriving home) how it's probably my fault that she had been hospitalized all of these times, (er doctor blamed her primary doctor for her previously taken medications. Noted he felt it was too much and didn't need to be on those so he changed it). Her primary doctor had given her a summary sheet of medications printed out doing her last appointment 5 days ago and told her to learn it.

This was a very bad idea. She has trouble understanding alot, and has been constantly picking it up throughout these 5 days..in an effort to force herself to remember and understand.

These 5 days she has questioned me constantly about it. I have explained it to her multiple times and she doesn't get it.
She has called her doctor and was explained to clearly which she understood one day, and the next day after she didn't remember speaking to him and was once again confused.

I told her that she's just not going to understand and that she should trust me. That I have been giving her the correct medication.
Still doesn't believe me.

Mom got upset with me today after she send me on a food run downstairs 3 times within 10 minutes bringing her food for her to return it and request something else..neither eating anything..she got angry that I said I cannot continue to run up and down the steps in this fashion ..as I have serious health problems too. She got snippy, and condescending saying that she just will do it , because she is tired of my "complaints". That was the only thing uttered from me.


I feel like the "end" is almost here for her. She has recently been omitting a unfamiliar odor, her appetite has drastically decreased, her clothes hang off her due to weight loss, one of her eyes has been partially closed, when she looks at me sometimes she seems like she's far away, eyes glazed (it has also been said that perhaps dementia may be setting in)

Does this sound like she's going to pass soon, perhaps within the year??

How do I know if it's dementia setting in??


What do I do with myself and life if she passes before me?

I'm 40, permanently unemployed, semi bed ridden, no income, no biological family, I've never had a friend..nobody has ever taken an interest or wanted to be bothered with me ever since I was a child, I have severe social anxiety, anxieties, PTSD, I don't like people, I don't like being around people, I am in the house 24/7, etc...

 

What do I do if they kick me out??

I feel like giving up on life.

 

 

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AARP Expert

Hey Tif,


I'm thinking that the sons are trying to help your mother get an appointment with a neurologist: what else are they willing to do for her, and to help you out? Do you stay at the house rent free, for your care of your foster mom? you may feel you owe her because she helped you when you were 11 and forward, but it doesn't sound like a fair situation for you.

It would be ideal if there was a team of people helping, and making decisions with and for this woman, so that there isn't backlash, balls dropped, and you get a break. Is that possible?

Have you considered getting a psychotherapist? You could get support which would be structured and hopefully weekly, maybe online and maybe in person. You could have someone to brain storm with about next steps for you, and also practical advice on how to live NOW in ways that are healthy for your body/ mind/ spirit. What do you think?

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AARP Expert

@TiffW232213 You've been through so much in your life, I know this is yet another huge challenge. I'm sorry you are hurting and afraid, and it's totally understandable. I don't know if you have any influence on your mom's doctors, but I'm wondering has she seen a neurologist to get a thorough evaluation and diagnosis regarding dementia? That's the only way to know for sure. There are many types of dementia, and it's very helpful to know what type. 

 

If you're interested in learning more about the symptoms and signs of dementia, here is a section of the AARP website devoted to dementia. Many helpful articles here: https://www.aarp.org/health/dementia/  

 

Another issue is have her doctors talked about hospice care for her? Hospice would at least provide some support for you (social work, chaplain etc.), sometimes some volunteers to help and visit with her, and a nurse on call 24/7, as well as home health aides to come to the house a few days a week to help her bathe etc. Here is my column about my experience with hospice: How Hospice Helped My Family.

 

And here is an article that describes hospice and what is involved Facts About Hospice Care for Caregivers

 

You have a very real concern about your wellbeing after your mom has passed on. It might be wise to begin looking into housing options etc. Do you have permanent disability benefits? If so do you have a case manager? The case manager should be able to counsel you about future planning, where you might live etc. 

 

I'm sure it's very difficult for you to talk to all of these people. Try to take it one thing at a time, and I hope perhaps you can talk with your doctor about anxiety and medications updates. 

 

I'm glad you posted here! We also have a caregiving group on Facebook that might be of benefit for you! www.facebook.com/groups/aarpfamilycaregivers 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

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Periodic Contributor

Thank you.

 

 

Every time she was discharged from the hospital the discharge papers advised that she have a follow up appointment with a neurologist within a week. 

 

She and her son's have tried to get an appointment with the neurology department at her hospital but has been unable to. They told her that there were no recent openings. Fully booked.

 

The best they could give her, was a useless in her case phone appointment.

 

She was worrying and obsessive about that for about two weeks.

 

For two weeks she kept calling and her son's spent calling and visiting to no avail.

 

I suggested that they try other places...as they were solely focused on gaining an appointment there... 

 

On their end, I don't think they ever did..

 

On my mom's end, I suggested that to her and she told me that she's not going to another hospital, she wants to go where her history and doctors are.

 

I said I understand that, but if plan a isn't working, time to switch to plan b.

 

 

She didn't appreciate me saying that and gave me the silent treatment. 

 

I have no agency or authority over her healthcare, other than issuing her medication daily..... (She doesn't trust that I give her the right medicine or at the correct times).. which in itself is challenging. 

 

She often doesn't remember taking pills...and often debates me about it and often becomes fixated on trying to force herself to remember on demand. 

 

After the two weeks of trying for an appointment, they all have up. No further effort has been made.

 

I just left it alone, and no longer bring it up.

 

Today after her being fixated and confused by her medication sheet from the doctor for almost 2 weeks straight, all the while arguing and lashing out at me, she finally agreed to let me put it away and out of sight.

 

 

I doubt this will last. I have a feeling that she'll want it back soon. Her primary doctor should really be mindful of her spoken words to my mom.

 

Knowing all of her current difficulties and struggles ...

Her doctor told her it would be best that she tries to learn and remember her medication. Soo...she's been hyper fixated on trying to force herself on demand to accomplish that.

 

She hasn't been able to do that and confusion sets in rather quickly. For two weeks straight everyday, multiple times a day, I have been explaining and answering her questions about it.

 

She just doesn't understand and nothing "sticks".. it's exhausting and tiring...

 Within the half hour her medication is given, she forgets ever taking it.

 

 

When she naps and wakes up sometimes, she gets really confused.

 

I have given her all of her medication today, she woke up from a nap, and asked me when I was going to give her morning medicine. (It's night currently) 

 

I definitely feel like some sort of dementia is settling it.

 

 

I also think that her medication is contributing to it significantly...the dementia, aphasia, and mini stroke.

 

Everytime she has been admitted into the hospital, the OnCall doctors always wind up decreasing or removing some of her medication..Their professional opinions are that her primary doctor put her on some medication that wasn't needed, and at a weird schedule. 

 

She was diagnosed with AFib about 15 years ago and was ordered to take Warfarin daily. She was removed from that and placed on Xarelto.

 

 

Whenever she is admitted also, she is labeled as prediabetic and was given insulin multiple times a day each hospital stay for the duration of it...but when she was discharged, that stopped and there was no mention of it verbally, only on papers.

 

 

 

At this point, it's just a guessing game with still no official diagnosis.

 

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Trusted Social Butterfly

I would seek some professional help via a social worker who would work with you..Your self esteem is really low and this allows uncaring people to literally walk over you with disregard for your feelings. You have to love yourself before others can and demand the self respect that you deserve. Those who bully you are doing it to keep you at their call to take their place in dealing with their Mother. She seems to have used you to her  will, ill regard to your needs and wants. Once she passes they will probably tell you to exit the home so they can be greedy and take all for what it's worth. You have got to start preparing for the worse and speak to that social agency about getting yourself a place to live as you may find yourself on the outside looking in. The past is the past so let it go and start on the present and look to the future for your own well being. You have been treated badly by those who want to take advantage of your caring for their Mom and you have so realize this and get ready for your new life..I wish you well and please go to the nearest welfare office or pastor to speak about your plight and get the necessary info as how to improve your living conditions asap..You have to watch out for one person and that's is YOU!

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Periodic Contributor

Thank you.

 

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Gold Conversationalist

Thanks for sharing...you've been thru a lot...

hope you continue to take care of you... as much as possible!

I also hope others here will offer their hope...their strength....& their experiences as well!

take care

 ~Allen 

 

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Periodic Contributor

Thank you

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