Caregiving Burnout

@Andromeda339

Hi and welcome. I am sorry for your need to be here, but pleased you found this place.

Of course it's about you. And rightly so. When one person is diagnosed with dementia, their family caregivers suffer with the disease, too. You didn't flesh out the family dynamic here, and I may be projecting as I am wont to do, I suspect you are not just valuable in this endeavor, you're probably the lynch pin.

A therapist might help. I found this site really useful. My mom git a lot out of an IRL support group, but I lined her up with a psychiatrist for some antianxiety/depression meds and a talk therapist. IMO, sometimes it's better to fix something rather than fix yourself when a situation is burning you out.

I have a lot of questions that would help me understand what might ease the physical and emotional burden you feel.

Mom. Late-stage dementia with sundowning is a care challenge. Does she also have other challenging symptoms like wandering, shadowing, sleep fragmentation/days & nights reversed? Does she take any medication to address her sundowning or other symptoms? If not, it might be worth seeing her neurologist or geri psych to trial something to dial back her agitation.

Dad. How old is dad and what's his health like? Are you doing laundry and cleaning because he isn't physically able? Are you doing laundry because he's of a generation of men who deem that to be women's work or weaponized incompetence? Or is it situation where dad is run off his elderly feet keeping mom from hurting herself?

Another concern that is surprisingly common, especially in older couples, is that the "well" spouse really isn't. Sometimes there's depression that needs addressing. And sometimes the spouse you think is the one without dementia, has an earlier stage, different kind or just different behaviors which can make it hard to see when you're in the thick of care for someone else. Between the lines, I'm hearing a lack of empathy on your dad's part and perhaps some poor reasoning-- both symptoms of dementia.

Money. Many problems can be improved by throwing money at them. How are your folks set financially? Do they have a LTC policy that could pay to bring aides in to help mom or pay for placement? Could they afford a weekly cleaner and laundry service? Is dad the type who believes you should do this all for free because he is loathe to spend money for such things? Is there money for and a plan for placement in MC at some point? Has dad done the legal paperwork and planned for Medicaid if that's applicable to their situation?

How are you set? Do you need them to provide a roof over your head or were you a financially independent adult who gave up a social life and home near work to help out? Or are you a younger adult who wasn't quite launched and became trapped by mom's needs?

If dad's older and can't help with housework/laundry/cooking/shopping because mom burns him out, then it's best to delegate that to paid help. If dad's letting mom nap all day while he watches TV, then you need to put your foot down. Full stop. If dad can't get to housekeeping because mom's a 24/7 handful then a day program for mom might give him a break to catch up on things.

What you are attempting to do is not sustainable. If this was a situation where mom was very late stage with death imminent, you might be OK for a time. But not as an ongoing lifestyle.

HB

Welcome. Do you hold power of attorney for your parents, both for finances and healthcare? You are likely to need it and if you don't have it, you need to talk to a certified elder law attorney as soon as possible. You are probably going to have to invoke changes against their will, we often say here that safety needs to drive the decision making. And that includes your safety and sanity also.

You can find certified elder law attorneys listed by location at nelf.org.

Hi discombobulated. You may get more responses is you start a new discussion.

You can potentially get your life back if you are willing to/can afford to find another safe living situation for your mother such as assisted living or memory care. Not everyone is cut out to be a full-time caregiver and there is nothing to feel guilty for in that.

the same advice given earlier holds here, you need power of attorney to make these changes. Block her phone and internet access, and take away the credit cards and checkbook. My partner was very susceptible to mail and phone solicitations, so i had to hide the mail (you could also forward it to a post office box) and i turned the ringers off on the phones.

Medication may help with the delusions and paranoia. That suggests that she likely is advanced enough to need memory care rather than assisted living.

Wow...great information and advice from people. I appreciate it. I see what is said about starting a new discussion. I'll do that when I get inspired to post again...which I'm sure will be soon. I guess i was just feeling Andromeda's pain and just posted here because i'd just read it. This is all such crazy and bewildering and emotionally destroying experiences. I took care of my dad until he passed and was riddled with regrets. Swore I wouldnt have regrets this time around...but I just cannot prevent myself from doing and saying things that DO NOT help the situation for me OR her. Sigh. Thanks again.

Andromeda and Discombobulated - my heart goes out to both of you. This is a such a relentless role, caregiving. And it is so easy to reach burnout.

Others have shared lots of excellent advice - especially regarding POA, financial planning, and how the heck to get medical care.

What I will add is that having a therapist for ME to talk to has been equally as critical to the help I have found for my mom. You can’t “fix” the situation, but you can create some moments/space for you to breathe.

Also when in doubt, I highly recommend the Alzheimer association hotline. They are trained professionals and really know what they are talking about. It was a great place to start when I become my mom’s caregiver and really needed help ASAP.

Also, one other non essential piece of advice: don’t worry about being less than productive at work sometimes, and neglecting/not being able to keep up with friend. You cannot do this perfectly and I have found giving myself grace, in the rare times that I can, is one of the best gifts I can give to both my mom and myself.

I am so glad you both found this website. People here are amazing and it really helps to feel less alone.