Caregiving Burnout

Andromeda339

Hello everyone. I’m new here. I could really use some advice. Can anyone recommend someone to talk to about how to handle severe dementia and sundowners? I’m single and live with my parents…only one is suffering from dementia. But it just feels like everything is in my shoulders. Clean the house. Do the laundry. Take care of mom…and I work full time an hour away. I am not by any means trying to make this about me. I’m just really overwhelmed with everything and my dad is not helping with anything. I just need someone to talk to about all this. Can anyone recommend a good counsellor?

harshedbuzz

@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

Andromeda339

Thank you so much for the comments HB! It’s almost as if you see into my life, lol.

To answer some of your questions…

My mom has never been to the doctor. Ever. For anything. She is scared to death of doctors. I have no idea why. My dad was never one to rock the boat. He wants her to see the doc, but he doesn’t like confrontation. So he just drops the issue when she bulks. I make appointments for her…only to have to cancel. But my mom’s sister has been officially diagnosed with Alzheimer’s, so I am most positive she has it as well. I know the signs/symptoms well. She gets restless, wanders, and my dad does let her sleep as long as she wants. I tell him all the time to watch her like a toddler because she will walk out the front door trying to go ‘home’. But sometimes he doesn’t, and it’s in those times, that she does stuff. Both being retired, they have no schedule. She had a super rough night last night, and my dad slept through it…with me having to deal with the sun downing (as usual). I put my foot down today and said no more. So we are talking about a schedule and possibly having a doc coming to our house to see her. It’s a step anyway, but I’m not very optimistic he will continue with a schedule, etc once we figure it out. My mom ‘lives’ in her younger years. She keeps saying she wants to go ‘home’ when she is at home. Every day is Groundhog Day…same conversations, same issues, same disagreements.

My dad…I think he does have depression. He loves my mom, but just won’t rock the boat when she gets mad/upset about seeing a doctor. When my mom has a ‘moment’ and forgets who he is, he takes it personal. He gets upset and walks away. He doesn’t like to see her like this and he tells me repeatedly that he doesn’t know what to do. He is healthy, fully able to help around the house but he won’t. He will if I repeatedly ask him to, but if the pets make a mess, it’s waiting for me when I get home from work, etc. I honestly don’t think it’s because I’m a girl, I think he’s just depressed. He didn’t get to retire on his terms, so there’s probably a lot of hurt still from that as well. I clean, do laundry, etc because it won’t get done if I don’t, and I’m not living in a dirty house. I’ve tried leaving the messes as people have suggested to see if he picks up the slack, but he doesn’t. I have no idea why. Just some days are more overwhelming than others.

My parents could afford help but have some trust issues with people they don’t know. But this may have to happen.

As for me, I am financially set. I love my parents and I’m happy to help them, but I’m just overwhelmed with no support system at home. I’m stressed at work, stressed at home. There’s no where to go without a stressful atmosphere. My friends are tired of hearing the same ol thing from me that they’ve stopped asking how things are. I know I am not alone, but honestly sometimes, it feels that way. I’ve been sick myself for the past few years (anemia) and now that I am finally getting healthy, I’m stuck at home. Not trying to sound selfish but I feel as if I have no life. I love my parents, but I need a life too. Is that bad to say?!

I appreciate any tips/suggestions any one can give me. Thank you, thank you!

M1

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.

discomROBulated

https://alzconnected.org/discussion/comment/196275#Comment_196275

I just joined up here...found your story first because I think what I feel most is burnout. I moved in to watch over and take care of my mom about 16 months ago. There is no one left in her life to take care of her and she has successfully pushed all of her remaining friends and even family out of her life. I was very ill prepared for this. I am not a caregiver at heart...I do not have the patience and temperament. My mom is very active and still functional in many ways but needs constant oversight to keep from doing something detrimental or catastrophic to her world. She has been scammed a few times with considerable amounts of money and it is a constant battle for me to intercept and nip all of the scams she heads in to (of course she argues that each and every one is legitimate). But the burnout is coming from the fact that its just me...24/7. I used to be able to go away for a few hours in a day or maybe maybe a quick overnight trip...but she has recently developed some sort of like separation anxiety or abandonment issues. If I go away without her, she gets very upset (and sometimes even calls me soon after leaving just crying with "anger") and inevitably meddles in stuff that requires damage control when I return. I've just shut down in terms of keeping in touch with anyone from my past. I don't have anything interesting to say and inevitably I'll just complain about my situation. I had a sis that would come visit every month or two for a day or two...it was so needed as its my only "adult" interaction in months. However, mom in her delusional paranoid ways, has accused her one too many times of things she didn't do, and has now cut her out of our lives entirely. I've tried connecting / dating 3 separate times over the past 16 months but they are quick to extract themselves from the situation (and I get it...I cant blame them...my life isn't interesting and I'm not very available). So....yeah...I'm definitely reaching burnout and I just want to pack up and wish her luck every day. It feels like I have given up the last productive and active years of my life for her and this situation...and there is no break, relief, or end in sight. How???? How do people do this?

M1

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.

BassetHoundAnn

Hi, Discomrobulated. What you're experiencing with your mom is called "shadowing." When a person with dementia follows their caregiver around constantly due to feelings of fear and uncertainty. The feeling of being smothered, and not having personal time and space, is a major reason for caregiver burnout.

Here's a little bit of information about it, and some tips for dealing with it: https://www.anthemmemorycare.com/blog/what-is-shadowing-can-you-minimize-it

Dealing with shadowing is really, really tough. I say that from personal experience. I was at wit's end with my mom. There were many days when I wanted to call social services and say I can't deal with this any longer (although it's highly doubtful that social services would do anything at all).

Salvation came when I finally got her into memory care. I could finally relax and get my life back.

I highly encourage you to investigate local memory care facilities, and the way to finance care. The first step is to obtain medical and durable powers of attorney. And speak with a good local eldercare attorney. One can guide you on the financial aspects, as well as provide advice on applying to some local facilities, and also preparing your mom's finances if she will need to apply for Medicaid.

Good luck. It's rough. We've all been through it.

discomROBulated

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.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/197207#Comment_197207

I was my moms 24/7 caregiver. There is no way I could’ve done it without this place and hiring in help. I hope you can get some respite time with help coming in and/or an adult day care. My plan B, a MC facility was always a consideration also. If it’s time for that, then it’s time.

Anonymousjpl123

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.