I feel guilty not wanting to care for my mom

jjames123

I have so much fear having my mother come and live with me in December. Her Alzheimer’s is progressing and I’m having to take care of all bills, financials, dr appts, etc… I never imagined having to take care of my mom at 30 years old, as a single mom with twin little girls. Also at my moms tender age of 58. She is slightly independent but now making not so good decisions financially, and becoming very frustrated at her forgetfulness and her losing everything everyday. How am I suppose to keep up? I’m working, my kids need my attention, and now I have to factor in my mom? I think about my social life. Is this it? At 30? Guys run away when I say I mention caring for my mom. And yes I know that means they aren’t the one for me. But I can see why someone so young wouldn’t want to deal with that. I cry myself to sleep just thinking about what my life will be. I get anxiety, my heart starts beating really fast. I’m so mad that this is happening to me. Everybody around me keeps asking me what I’m gonna do and I don’t have a darn* answer. No siblings, husband. Nothing. Everybody makes me feel guilty for wanting to choose my life. I think I’m just lost. Depressed. Angry. Mad that I’m not rich. So I can care for her like I want. Sometimes I feel like I’ll die soon of a broken heart and grief taking on this challenge. Watching her decline and not being able to fix it bothers me to my core. And I just cry all over again. My kids are wondering what’s wrong with me. Idk.

M1

jjames this does sound very difficult indeed.  Have you talked to the Alzheimer's hotline?  1-800-272-3900.  I don't know if they can help you strategize, but maybe they could.  Your twins need you for sure and need to be your first priority.  Maybe the hotline or your local alzheimer's asssociation could help you figure out if there is another living situation possible for her.  Good luck.  If you call the hotline (it's free), ask to speak to a care consultant.

MattyBoy

JJAMES... i feel for you...

i think you expressed your fears, thoughts and guilt beautifully... and that sort of transparency and "being in touch with yourself will, ultimately, serve you...

i have felt all of the feelings you expressed... but things DO settle... i can't present you with a quick/easy answer... but, in a bit, you will see everything more clearly... and you can begin to attack everything strategically...

again, sounds to me like you already have the mental and emotional tools... it is evidenced in how "real" you are being...

take one day at a time... go "micro"...

i wish you the best as your story continues to unfold...

PickledCondiment

So much to unpack here, below are some suggestions from someone currently in the trenches.   

-A consultation with your PCP (primary care provider) is necessary; lay out your situation, frustrations, concerns in complete detail. They cannot help you if you don't tell them everything, you need to ask.   They will have resources (counseling, support groups, etc) to help you prepare a care plan for  yourself, your children and your mother. 

-Connecting with the Alzheimer's associations at local and national levels are excellent suggestions as well, they have resources and will understand your situation.  

-A conversation with your mother's doctors, etc to determine continuing care are necessary.  They also will have suggestions, resources that may prove useful. 

-An appointment with an eldercare lawyer to ensure your mother's financial situation is in order and you have the necessary access and legal powers to conduct her financial affairs.     

Everyone's situation and response to being a caregiver is different.  For me; having a plan, having resources to work with, taking positive action have made all the difference.  My LO's situation has not changed but my approach to dealing with the situation has changed.

  

abc123

Dear jj, you are entitled to have all of the feelings you described. Being honest with yourself is very important. I strongly suggest speaking to your mom’s doctor AND the hotline here. At 58 your mom would be considered early onset and that condition can be extremely difficult. You have to consider your twins too. I’ll be thinking of you. Let us know how you are doing.

abc123

Does your mom have long term care insurance?

Does she have any plans in place for her old age?

Does she own a home?

Speaking with an CELA would be a good thing. They can guide you in many important matters such as Medicaid. 

jfkoc

From your words I clearly hear that you do want to care for your mother but fear what that is going to mean.

Yes, it will be a challenge. Yes, it is going to change your life and the lives of your children but the journey is one day at a time. it twists and turns. You meet it head on everyday.

Please keep in mind that there is much you can do to make the days easier...not always easy, but easier.

All of your fears may be realized but then maybe only a few.

My suggestion is to start to learn. I suggest any book by Naomi Feil which you can probably get from your library and then I'm Still Here by Zeisel. Both of these will give you a strong foundation.

We are going to be here for you with information and support. Also we are here to just listen. 

Laura4yoga

So sorry you have all this to navigate! Most of us here have been in this situation and totally hear you! Continue to go with your gut and do the best you can! But please, please take care of you! 

Allow yourself options, get in home help, and my biggest tip is to get prepared ahead of time so if at a point you feel being full time caregiver is just too much you are not navigating in a “crisis” mode. Caring for our loved ones in our homes is very exhausting and stressful. Make sure you have a big team of back ups and times to get away. This is very difficult!! Not that it can’t be done, but going in knowing the expectation helps. We did ok with my mother in law for about a year but soon realized we felt we wanted to enjoy her and our relationship and we could no longer manage the direct hands on daily needs. We needed her to be safe even tho she did not understand she was not safe she reluctantly moved. The transition was hard, but 2-3 weeks after being placed in an assisted living and after many, many phone calls saying “I don’t know why I am here and need to leave”….she settled in and now after a year, is thriving and enjoying her social life and new friends! 

You will do your best for her, you and beautiful children! If she would be placed in assisted living don’t let that feel like you failed! Just because you aren’t doing direct care doesn’t mean you don’t care! It means you care so much for her, you and your family’s well being for the long run that decision is a sign of strength not weakness! Take care and time to make wise decisions that are best for everyone’s mental health and safety! 

A couple of respected resources I have found very helpful (besides ALZ.org) is some expert care advice may be found on YouTube with Dr. Natali (dementia care blazers) and the well known Teepa Snow!

 https://youtu.be/BNVJ6q2kFeQ

 https://teepasnow.com/

eaglemom

Welcome to the message boards. We are here to let you vent & to try and help you along this journey. Your situation is indeed overwhelming. It will always seem overwhelming when looking at the 'big picture.' You need to try and get your mom's paperwork in order. Just focus on that. When that's done then see the lawyer - do not miss this step. When getting your mom's items in order with the lawyer get yours done also. 

Bite off things to do one thing at a time. You can call the ALZ Helpline and ask to speak with a care consultant 1-800-272-3900. Have you looked in your community if they have any support programs? With Covid things have changed, maybe virtual meetings are being offered.

Where is your mom living? A house that will need to be sold? In a different place than you? Is where you are living large enough for your mom? You have twin little girls - girls are silly and loud - will your mom be okay with that level of noise? 

Your head is spinning, and it will for awhile. You have to keep you healthy for the girls and subsequently your mom. You are young as is your mom. (I started on this journey with my DH at 54.) Look into day programs your mom could attend. Take a deep breath and we are here to help you.

eagle

Rescue mom

Many, if not most, of us here have had similar feelings, without even having to deal with young kids as a single working mom. Don’t feel guilty, we are dealt a bad hand. It’s not fair, I think we’ve almost all talked about anger and wanting to run away. But now we have to play the cards as best we can. We can’t fix it, nobody can, we have to deal with it.

But here are some more practical tips….at 58, that’s early-onset ((EOAD) and it often moves fast, faster than others. Call or go see (set up an appointment) your local Alzheimer’s Association and they will give free help you sort out things you need, like power of attorney (POA), health care, and other legal papers to take over your mom’s affairs. 

They can also help you find a lawyer who specializes in elder/dementia legal matters such as that. They also have support groups who can tell you your feelings are not unusual, and provide lots of practical tips on how to deal. Most stopped during COVID, but many have started back again.

Has she been officially diagnosed with Alzheimer’s or any dementia? Most cases under 65  need that Dx to get Social Security disability, and you will need all the financial resources you can get. You will also likely need Medicaid, unless you or she is wealthy. Again, a lawyer is invaluable. A few people have done those without a lawyer, but most say a lawyer is needed, especially to get Medicaid as quick and easy as possible. A PCP may be helpful with the Dx, but many will send you to a neurologist for Dx, and to the AA or lawyers for other help.

Soon you will likely not be able to care for her, work, and care for kids, alone. She may be incontinent, she may wander, she may not dress, she may not recognize dangers such as a fire, or that household cleaners cannot be eaten. (Much like you can’t leave a toddler alone). All those are very common behaviors.

 Getting help, day care or placement is not a failure, nobody can provide that kind of care alone 24/7. Plus kids. People who do not have to deal with it, have no concept of what they’re talking about if they tell you different. It takes help from others, family or hired help or a facility. 

Start looking at adult day care in your area. The local Alzheimer’s group can also help you find those.

Placement is you still caring for her, just in a different way. (See what another poster said about placing, and that case was 2 adults trying to have their LO at home). It may be in the future, but keep it as another avenue you can take for help. You may need Medicaid to pay, which is why you may need to get started on that with a lawyer.

It’s not the old “nursing homes” of 20-30 years ago. It’s like apartments with lots of help and others for company. She would have fresh, trained staff to help, as well as food, help with meds and dressing, and the social activities. Many PWDs actually do better with the constant care and socialization. Her safety is now your primary concern. She will very soon, if not already, be unable to make good decisions for herself. That’s up to you, and yes, it’s hard.

It’s a lot, and a lot to think about. But getting with your local AA can be a hugely helpful first step, just in outlining and prioritizing what you need to do, and how to find experts who can help you get it done.

jjames123

Thank you. I’ll do that.

jjames123

Thank you. I’ve scheduled an appt with my dr. We will see how this goes

jjames123

I will. Thank you

jjames123

No insurance or assets… if it weren’t for me, she wouldn’t have anyone else

jjames123

Thanks for responding. She lives in a senior citizen apartment complex at the moment. Her funds are running out so her time there is limited. By the end of the year she’ll have to come back and live with me.

Cynbar

jjames, please keep your options open and start thinking about a Plan B, just in case. She doesn't necessarily have to come live with you. Some people (doctors can be like this) talk as if all that matters is the person with dementia, but it's not true, the whole family matters. Your first obligation is to be present and available for your twins, and the quality of your life is important too. Start working on planning for the future, even if she does come live with  you for awhile. Dementia is a progressive disease, it always gets worse. If your mom has no assets (and hasn't given large amount of money away in the last 5 years), she should be apply to apply for long term care Medicaid. Then, you will have to find out what types of facilities Medicaid will pay for in your state. In some states, it will pay for assisted living and memory care, in other states it won't. Then, start checking out local facilities who accept Medicaid, do some online research and schedule in person tours. Some will be better than others, some will have more focus on early onset dementia patients. But the time to start putting these pieces in place is now, even if you think it won't be needed for awhile. It is much more difficult to do it in crisis, mode, and you may well feel better with an "out" in case moving your mother in doesn't work out.

DawnOfANewDay

I am so sorry that you are going through this.

I don't think you should bring your mom into your house.  You have two small children and work full-time.  Your children come first.  Find a social worker/ombudsman/whatever your county has to help you in getting her Medicaid and placement in a memory care unit.  You can always bring her to your house for holidays and week-end.  

RunningWorried76

Don't feel alone, and don't feel guilty at wanting to focus on yourself. You're not alone. I'm happily married with 4 kids, and now my mom (late 70's, with mid-level dementia) lives with us. It's a struggle, and it's put pressure on my family life. I feel divided between taking care of mom and paying attention to my family. I'm doing what I can, but there are times when I wish she was out of here and I didn't have to worry about it. I felt a lot of guilt at first, and I've talked with counselors and my psychiatrist about my thoughts (depression, guilt, etc.) and that's been helpful.

Definitely try to make time for yourself without mom around. One thing I'm lucky about is that mom saved a good amount of money and I have POA, so my wife and I hire help and usually leave her with her hired caregiver so we can focus on ourselves and our kids. Going on a trip? She's staying with caregiver. I felt very guilty about this at first, but realized it's the best for everyone all around. The last time we took her with us for a beach weekend trip was a disaster. She fell on the beach, she just laid around all the time. It was not worth bringing her.

Sorry if I'm going on a tangent a bit, but I guess my point is it's ok to want to focus on yourself. In fact, it's necessary. Look into the resources here, family or friends, etc. Anything you can to get the breaks you need. Don't feel guilty. You're already doing more than probably a lot of 30 year olds would do in this situation.