How Can I Cope With Being a Primary Caregiver?
October 15, 2015 5:27 PM   Subscribe

My mom has dementia. She's in denial about this dementia, and her denial has created some difficulties. I feel guilty, but acting as her primary caregiver is starting to affect me adversely.

I did not realize that it was truly dementia until I found out that her lease was about to expire, and she still hadn't gotten a place to live. Long story short, her cognitive function is impaired enough that she didn't reach out to the appropriate channels and was unable to coordinate moving out of her apartment for herself. According to a leasing company of a complex she did try to get into, she had been in their office every day and in several instances was crying belligerently, unable to comprehend that her application had been declined. I moved her into a long-term-stay hotel, reserved a storage unit, took two days to clean out her apartment (where I saw many past-due balances, many recyclables placed in random locations, etc.), handed the keys to her landlord, and suspended or terminated her utilities where appropriate. It has been a non-stop nightmare. I have spared you the less important details.

But I did what I could to activate my mom's social network, such as calling her best friend in another state, and instructing my dad to alert social services. They are divorcing, but the process is being hindered because my mom is experiencing delusions, forgets the status of the case or changes her mind. I left a message with her attorney's secretary about her mental state, begging him to call me back, although by now I strongly suspect that he is fully aware that she may not actually be competent enough to manage her own affairs. I didn't get a response. He did, however, mention this fact to my mother apparently, who then got pissed at me for reaching out to him behind her back. Meanwhile, I've also alerted her doctor, who is going to try and guide her to a neurologist, and have a few other people trying to guide her to social services so that they can find her a place to live.

But I face every day with dread now. In addition to the phone-calls I now field from everyone else, my mom calls me 10-11 times a day, and keeps calling if I do not answer. My phone died once and when I got home and charged it, I found 11 voice messages sitting in my inbox. The calls begin at 8am (thus waking me up) and take place about once an hour or so. I usually spend that time reiterating things for her, reorienting her to where she is (like the fact that she is in a hotel), answering random questions from her, etc. I manage to remain calm and pleasant, because I know that she cannot help it. I also cannot ignore her phone calls because not hearing from me may cause her to panic, which would aggravate her condition. Since I am her (only) daughter, other family members have stepped back or otherwise declined to assist me with her care or don't give a shit about finding her a permanent place to live.* I have been told that this is my life now, and that I'll "survive it."

Nevertheless, I have gone from speaking to my mother once every few weeks to multiple calls a day in a very short amount of time. For plenty of reasons associated with my prior questions, I generally do not enjoy phone-calls from family and get anxious whenever I have to deal with them. And I know that I have to deal with my mom and can't tell her to ease up on the phone calls because I made the conscious choice to help her. And, unfortunately, she would forget that I asked.

I was able to remain calm and strong for the first week of this, but as of Monday I started crying every day from the stress. I can't focus, I can't do the things that would normally allow me respite when stressed out. Others have noticed a degradation of my writing skill, and I find myself stuttering and writing with typos. And I was already taking a break from working because of how piss-poor my mental health is.

I'm not completely without support: my best friends helped me move my mom's stuff, my partner cooks for me or brings me food, I have an excellent therapist, and have started Wellbutrin. I am also aware of Wellbutrin's initial side-effects, and I am sure that I would feel this terrible even if I hadn't started it. All I know is that I'm sitting in dread in between phone-calls from my mother, constantly dreading the next one, and that there will be no end in sight until *maybe* she finds a place to live. And it makes me want to run.

*bonus details: I don't have a license and can't drive her around to different apartment complexes. She does not receive enough in social security to afford the assisted living communities, and has expressly stated that being placed in such a community would cause her to go crazy. Placing her in an apartment and slowly working an aide in could be doable, but she cannot drive outside of a specific location and has also stated that since her peace of mind is more important than anything else, she will not agree to move outside of her current town. I can answer questions about what New Jersey county she is in privately.

My question is this: what steps can I take to prevent myself from cracking entirely? How can I better take care of myself so that I can take care of her? Or, if it's really stupid for me to keep trying to do this, how can I get more people involved so that the actual adults (I'm 25) can step in and get my mom where she needs to be?
posted by Ashen to Human Relations (25 answers total) 9 users marked this as a favorite
The most important thing to remember (and this is very hard)-- Is your Mom has a diseased mind and you have to keep reminding yourself that you are dealing with a person of diminished capacity and ability to reason logically.

Now step back and try to see the situation from above. Most likely it will be necessary to have your Mom declared incompetent and let the state be her trustee. If your father is out of the picture it's not fair that you should be entirely responsible for managing this by yourself.

You're not a bad daughter if you admit this is a problem too big to handle. You can still advocate for her and make sure she is safe, but you need to turn this over to the experts.
posted by BarcelonaRed at 5:52 PM on October 15, 2015 [17 favorites]

One thing you can do is reach out to your local Alzheimer's Association chapter, and they should be able to direct you to in person support for your mom and for you; the association website also has more general resources for caregivers.

If you/your mom can afford it (and, most are happy to help you figure out how to apply/get whatever sort of financial assistance you can), there are also adult day centers which can help to keep your mom occupied/get treatment during the day, so you can do you. Many have transportation services, so you wouldn't have to worry about that aspect.
posted by damayanti at 5:52 PM on October 15, 2015 [9 favorites]

Work with her doctor to understand her limits. Get a social worker who can help organize all the moving parts. With dementia, you need to place her well-being above her wishes. You may be able to work with medicaid or other programs to get her the care and housing she needs.

One of my co-workers recently put her grandmother in memory care. It's a big shift to communicate with somebody who can process what is happening to them, and somebody who can't. They tell her that the repairs at home are almost finished, and she can go home soon. Just not yet. They sold the house months ago.

So don't feel you need to engage her. Deflecting is the best way to manage her anxiety, and it will hopefully make these conversations easier for you.

It's a hard thing. I wish you the best of luck.
posted by politikitty at 5:56 PM on October 15, 2015 [6 favorites]

Due to the physical and verbal abuse you suffered at your parent's hands as a child and adult I would actually recommend you disengage from her until you have more stability in your own life. Her burning through her support system does not require you to sacrifice your own life or health.

Your father is still married to her and you can let him know you will not be taking over his responsibilities.

Your mother sounds like she needs to be in a care setting, not independent living, but if she is not willing to accept that you cannot force her and the fastest route to help may be her having a crisis that authorities may have to respond to.
posted by saucysault at 7:03 PM on October 15, 2015 [32 favorites]

I've been following your AskMe posts for years and greatly admire you for extracting yourself from several untenable and unhealthy situations at home and at work. Please make sure your oxygen mask is working before engaging further, which is good advice for anyone but seems especially salient here given that you're prone to being a little bit fragile vis-a-vis depression and your work situation means you shouldn't put yourself on the hook for her hotel and other living expenses.

Speaking of money, another reason to disengage since you've already ensured that your mother has competent legal counsel: the division of assets accompanying your parents' divorce MUST be fair to her but you need to stay out of it. Yes, her financial circumstances have the potential to affect you, but ONLY if you let them and you can't be her advocate in this regard unless you truly don't care about your relationship with your father.

For what it's worth, I appreciate that you want to behave correctly as an adult, but you're only 25 and this is difficult stuff to navigate, emotionally and practically, at any age. You've done your part vis-a-vis the doctor and lawyer; get a social worker involved to help find her appropriate housing and you're done.

PS: Any chance the divorce is really about your father's wish to avoid having to devote all of the family assets to her care and/or frustration with behavior that is now understood to be related to her creeping dementia? If so, he might be more willing to help in practical ways than the fact of the impending divorce suggests.
posted by carmicha at 7:47 PM on October 15, 2015 [8 favorites]

Thanks, carmicha. No, the divorce was initiated by my mom this year, with the heavy encouragement of her sister (I was present for this); but he had moved out of the house two years ago after an event with her which nearly killed him. If it had been safe for him to live with her, they never would've sold their house; in fact, he was going to get an aide (via medicare/medicaid?) to assist with the more difficult aspects of her care as she got worse.

He has been calling social services, but has not been successful because he doesn't have all the information they need. Her documents are in severe disarray, 10 bags of bank, medical and other records that I salvaged from her apartment last week, but I really need someone to organize them. If I'm honest about my limitations, I cannot.

Also, she authorized my use of her credit and debit cards - this comes at no cost to me financially, and if it had she would've been screwed from the start - I don't have money. I've been trying to push the fact that all my bills are due out of my mind until my mom's situation stabilizes.
posted by Ashen at 7:55 PM on October 15, 2015 [2 favorites]

No, this is not your responsibility. I am so sorry that you are enduring this, and I really want you to know that you do not have to sacrifice yourself to your mom, no matter how much you think you must. Visit a dementia support group in your area. Listen to the stories. Know that it is that hard if you have a completely uncomplicated relationship where you would do anything for your parents with a whole and happy heart. Now, knowing your past? That's not how it's going to be for you. It's going to be much much worse. (i'll send you a memail.)

Call your dad and tell him that this is dangerous for your mental health and that it's starting to impact your physical health, too. Let him know that he's going to need to find services for her, and not because they're married. Because you are his daughter and you need his help. And call her fucking sister that convinced her to get divorced and tell her it's time to step up and help deal with the consequences. Tell your whole family, in no uncertain terms, that they need to be stepping up instead of back. Do it on email or phone or in person, whatever is easiest. It's ok to cry and be angry and tell them not to abandon you.

Get a google voice number. Record an outgoing message that says something like "Hi mom! You're in a hotel. I love you. You need to call dad or your lawyer for help, not me." and change your phone number in her phone to the google voice number. Don't listen to the voice mails she leaves. Call when it's convenient for you (not every day!) and check in.

Stop taking responsibility for her life. You can not fix it.
posted by stoneweaver at 9:15 PM on October 15, 2015 [19 favorites]

To be clear, it is your father's problem that he doesnt have what he needs for social services. These people have terrorized you your whole life. You are absolutely not obligated to sacrifice the shreds of mental wellbeing you have left to them.

Parents have a responsibility to their children, as they chose to give them life. You have no responsibility to your parents, as they have done nothing to earn it. You already did more by getting your mom out of her apartment than I would have done in your shoes. Stand up for yourself, because you're the only one that will. If your mom ends up on the street or whatever, she would have ended up there NO MATTER WHAT YOU DO. I really can not stress this enough. Nothing you do, as an untrained, over stressed, young adult with PTSD that she gave you can prevent it. Seriously. Maybe your dad. Maybe professional services. But you have no power. So, don't pick up the stress and responsibility.

Delete the voicemails she leaves you. Send her calls directly to voicemail. Don't even let your phone ring. Step back.

The only person you can save is yourself.
posted by stoneweaver at 9:33 PM on October 15, 2015 [24 favorites]

Please do as stoneweaver suggested. This is not your responsibility. You've done a great service of emergency management, now remove your hands from the situation.
posted by zennie at 9:53 PM on October 15, 2015 [2 favorites]

As far as the phone goes, I would be tempted to get a new phone to use with friends and other family members (those who can be trusted not to give your mother the number). Use your old phone just to speak to your mother as little or as much as you feel comfortable doing so.
posted by hazyjane at 10:08 PM on October 15, 2015 [3 favorites]

My friend Annie has been taking care of her mom for many years through issues with MS and mental illness that sometimes involves memory/cognition problems. She and others started the Cradle to Grave Caregiving group blog (also a community on Facebook) to talk honestly about this kind of situation with other people who get it. I know at least one other contributor deals with a parent's dementia. The focus is especially on younger caregivers; Annie has been doing this basically since high school.

If nothing else, their stories can help reassure you that you're doing the best you can in a very difficult situation.

Good luck! I really feel for you here.
posted by St. Hubbins at 10:53 PM on October 15, 2015

My bio-mother is abusive enough that I have no relationship at all with her, and she doesn't even approach the levels of abuse your mother has inflicted on you. If someone suggested to me that I (with two decades more than you of illness, death, nursing home internment, home hospice care and various other family aging care crises under my belt) would in any way participate in my bio-mother's aging care, I would laugh in their face.

That sounds awfully cruel, doesn't it? It's not at all.

I am not a person who can help her. I know this, and I would no more try than I would try to build a rocket to the moon.

You are not the person to help her. That's not bad, it's not your fault (it's her fault, but that doesn't matter here).

Tell your dad you can't do it and wash your hands of it in the quickest way possible.
posted by The Noble Goofy Elk at 12:14 AM on October 16, 2015 [7 favorites]

I agree with those who have said this is not your responsibility, but I additionally want to say that you definitely shouldn't feel bad about not driving her around to apartment complexes. A person in her situation should not be living in an apartment complex. She's going to end up in assisted living whether she likes it or not, and it will be a heck of a lot easier to not have to move her twice (people with dementia do not deal well with upheaval and setting changes like that) but the things you would have to do to make sure she is safe are things that you shouldn't need to do given the history (having her declared legally incompetent and getting conservatorship). So, all I'm saying is don't feel bad about not helping her when she's trying to put herself into an unsafe situation.
posted by treehorn+bunny at 12:57 AM on October 16, 2015 [9 favorites]

I'm sure you've seen this site already, but in case you haven't, there are long-term care options open to eligible people (even though it seems New Jersey is pushing towards care in the community). You've set a diagnosis in motion, which will hopefully help meet the criteria, so that's great. It does seem to require a lot of fiddly paperwork.

I think that if you feel ambivalent about your mother, it might be helpful for you to do what you can to assist with the paperwork so that she can get into some kind of housing situation. I think it will be easier for you to walk away, if you need to, once you know that she's got shelter and that services are in place, or on the way.

If there's a small and specific set of records that are required, use your mom's cards to order duplicates of the records that you can access via your dad (if their marriage means he can). That might cut some time. If that doesn't work, insist that he sit with you and your partner to go through the bags. Or hire someone to sort them with you, don't try it alone.

(It sounds like there might be some disorganized hoarding going on, is that right? There are professional cleaning services familiar with situations like that; they won't blink at ten bags of stuff. Ask your dad for help in paying for this, or use the cards if you can.)

Get a bunch of boxes and bags and some good coffee, sit with your dad and partner (or whoever can help), put on some music, and do a gross sort, using the categories of documents needed for eligibility. "Bank", "medical", "taxes", "X", "figure it out later", "obvious junk". Work fast. Look at these documents only for as long as it takes to determine what they are. If you find the things you need as you go, great, they go into a special box. Take regular breaks for air, and leave when you need to. Expect to need time for emotional recovery afterwards.

I asked this question, and found the answers very helpful.
posted by cotton dress sock at 2:48 AM on October 16, 2015 [3 favorites]

It is very possible, due to the vagaries of our crappy social service system, that you calling an elder care social worker and telling them that you can no longer care for your mother, and that no one else can either, will actually get her into a stable living situation more quickly than your best efforts. I'm not guaranteeing that because I don't know about your particular area, but where I live, if someone is immediately facing homelessness social workers will hustle to get that person into housing whether or not every piece of paperwork has been completed.

The fact that your mother has alienated everyone in her life is not your fault. The fact that she might have to live somewhere she doesn't want to live is not your problem. You are a lovely person for trying, but you may actually be less fit to help her than someone else because of her history of being abusive to you (which is 1000% her fault). I can see that you are assuming that her wishes must be adhered to no matter what, which I'm sure is how it was in your house growing up, but that is not the case. A professional will be able to evaluate her and get her into the care that she needs, whether or not it's exactly what she would choose for herself. She isn't necessarily able to choose for herself. She has dementia.

I agree with the other posters that you have done an amazing job at extracting yourself from some awful situations. You don't need to be the person who is in charge of this.
posted by chaiminda at 4:09 AM on October 16, 2015 [12 favorites]

It sounds like it is urgent for you to find an attorney, so you can ask about how to mitigate the potential legal and financial risks to your mother and yourself. A local attorney [] can also explain legal options [] in your community, including Adult Protective Services.
posted by Little Dawn at 10:26 AM on October 16, 2015 [1 favorite]

I would call APS and get them involved. Your mom can't take care of herself, is at extreme risk of homelessness, and doesn't have any caregivers. (You don't count, because you need to be stepping back.) I work with APS in my professional capacity a lot and I would absolutely be calling them in this situation.
posted by jaguar at 12:28 PM on October 16, 2015 [5 favorites]

jaguar's advice is spot on, Adult Protective Services need to get in this mix immediately. But I think this is something your father can do also. You don't need to accidentally set yourself up as a contact / responsible party in their eyes.
posted by The Noble Goofy Elk at 1:14 PM on October 16, 2015

You don't need to accidentally set yourself up as a contact / responsible party in their eyes

Oh, good point. You likely can make an anonymous report of (self-)neglect, though I can't guarantee that. That would at least get them involved.
posted by jaguar at 1:31 PM on October 16, 2015 [2 favorites]

I was the primary caregiver for my mom who had dementia for six years at home and then moved her into a care facility for the last two years of her life. I loved my mom and had a good relationship with her. I had resources and she had insurance including long-term care insurance. I had a brother and sister-in-law who had my back and helped when they could, I was able to have caregivers come in and help. Still, it was hard. Really, really hard. Managing the financial, legal, medical stuff involved in caring for her was a struggle. All that responsibility. There were days when I just wanted to give up. If I hadn't had all the help I did, I can't imagine being able to do the job--and that was despite really wanting to do it.

Your situation is entirely different. You do not have the resources, support, and backup that I had. You should feel no obligation to care for this woman who never cared for you. You should not feel any guilt or allow anyone to put a guilt trip on you. Take care of yourself. You have done enough.
posted by agatha_magatha at 3:09 PM on October 16, 2015 [2 favorites]

I remember some of your other questions. I... I can't imagine how you are handling this with such grace, given how horribly they've treated you.

This isn't a short term situation, this is going to be years and years of things slowly getting worse. You've GOT to extricate yourself, you should not be giving up your life to help somebody who spent years physically, mentally, and emotionally abusing you. Caring for another adult is a gift we give to somebody we love deeply, not an obligation we are forced to endure. She in no way deserves your gifts, and you should not feel a bit guilty about it.
posted by zug at 5:11 PM on October 16, 2015 [1 favorite]

Thank you so much for your responses.

I put my phone on silent all day and left it somewhere in my room and the relief that I experienced was significant. I was also thinking about the number of months it's been since I stopped working, how long it would take me to adjust to caring for my mom or, if I stayed in longer before passing the responsibilities to someone else, how long it would take me to recover. It will not look good, and I'm already taking a hit to my career for being away this long. And I'm fast running out of money. Once I realized that I'm actually in a worse condition than the day that I stopped working, I accepted the fact that I do need to pull away.

So I told my dad. I'm calling my mom's best friend, who has offered to be her guardian once my mom is declared incompetent, and telling her in no uncertain terms that I can't handle this. I'm sending her records to her lawyer. And then I'm turning off my phone. I need to go heal.

Thank you for giving me the encouragement that I needed to step back. A bunch of people made really shitty decisions that created this situation, from my dad (who knew about my mom's schizophrenia diagnosis but said nothing even when I was beaten regularly) to my aunt (who I warned about my mom's potential memory issues years ago but refused to speak to me about them). Those people can now take an active role in her care. The resilient, strong healer/daughter that they expected to come out of my home environment simply isn't there.

I will work towards being okay with that.
posted by Ashen at 8:02 PM on October 16, 2015 [19 favorites]

The resilient, strong healer/daughter that they expected to come out of my home environment simply isn't there.

I think you're plenty strong and resilient, from what I've seen. I think what they expected around this issue was more along the lines of a submissive, obedient daughter, who did their bidding out of fear and guilt.

You're stepping back for your health. That's pretty healthy in my book. Don't internalize this as a failure. I see it as a raging success for you!
posted by The Noble Goofy Elk at 12:01 AM on October 17, 2015 [8 favorites]

I think you're plenty strong and resilient, from what I've seen. I think what they expected around this issue was more along the lines of a submissive, obedient daughter, who did their bidding out of fear and guilt.

Yes yes yes yes yes yes yes. Please don't look at stepping back as a failure or a weakness. Choosing to take care of yourself in the face of overwhelming pressure to neglect and even harm yourself is strong and wise and brave.
posted by jaguar at 6:27 AM on October 17, 2015 [10 favorites]

Good for you! It takes incredible strength to make the decision to care for yourself above all else, but you are the only one who can.
posted by agatha_magatha at 12:40 PM on October 17, 2015

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