AARP Online Community and Discussion Forums - Seeking Support/Someone Else in My Situation

RachelC961851 · ‎04-10-2019

I just came across this site and am so glad I found your post! I’m a 41 year old only child (also happen to be an RN) who moved back home after 23 away living my life to become my mom’s full time care giver. I moved back and basically gave up my entire life on 9.29.17. I moved into my mother’s home as she is completely unable to live alone. She is completely bedridden (due to morbid obesity), Type II diabetes, hypertension, depression, osteoarthritis, etc. I am at her beck and call 24/7/365. I am the full time housekeeper, full time cook, errand runner, grocery shopper, bed pan assistance, adult diaper changer, giver of daily bed baths, etc. I have not slept more than 3 hours at a time in 6 months because she wakes me through the night for random things. I love her and do not tell her no and very rarely vent my frustrations to her. The things she wakes me for: please come scratch my toe (due to her obesity she cannot reach her feet-well she prob could with considerable effort but she doesn’t try), can you move my pillow, can you find my glasses that have been lost in the hospital bed (usually within breath sight and reach), etc. she has not been out of the hospital bed in her home since 10.31.18 when she last came home from a hospital admission. I have 5 fur kids of my own and also take care of mom’s two fur babies. You only get one mom though and I love mine dearly! I am definitely starting to see that some things need to change (I’ve just come across the terms caregiver stress and caregiver exhaustion-actually was diagnosed with those during a recent unexpected ER visit!) and I’m just now starting to look around for what support groups and other resources are around for people who do what we do. I can usually only be gone from her house for about 4 hours at a time because she will need food, drink, bedpan, etc and I am the only option! We have used sitter services in the past, but that doesn’t last long as mom really only wants ME to do things for her. Also, I am doing this for ZERO pay. I would never expect to get paid to help my mom, or anyone in my family for that matter, but it’s to the point it is truly impossible to get a job as there is no way I could be gone longer than 4 hours at a time!). And if by some miracle I could be gone for 8-12 hours (typical hospital nursing shifts), I would walk back into a list of things to be done because mom wants ME to do them, not whomever was here helping. That’s one of the reasons we stopped using a sitter, they basically sat here and would do some cleaning but mom wouldn’t let them do anything else for her. NOT because the sitters weren’t willing-they were all wonderful ladies; it was because she prefers I do it. It made the sitters bored and feel like they weren’t doing their jobs-and thru no fault of their own! Say for instance, sitter here for four hours. I would go to the bedroom I’m using just to be alone for the solid four hours-now, maybe 45 minutes max before mom is calling asking for my assistance to show the sitter “how to do it” or to help the sitter. Ighhhh.

I apologize to everyone for the lengthy and all over the place rant!

Thank you again!

SierraWinds · ‎09-21-2019

wow, you are a saint! I don't know what other people are saying because I can't see the replies, but how do you feel about putting boundaries between you and your Mom? I mean, 3 hours of sleep a night? I'd be really tempted to say "don't wake me up unless you're dying, or some variation on that theme". I just moved my Mom in to live with me and we had a come to Jesus meeting the other day. She called me a **bleep** and said it must be nice to know everything, etc. I don't think I should have to put up with that, nor should anyone else. If she was completely out of her mind it would be one thing, but she isn't. I'm feeling really guilty here, but I really don't want to have to deal with her. She's been a helpless whiner her whole life. GOD forgive me for saying that. It's hard.

agoyer · ‎04-10-2019

@RachelC961851 Hi Rachel - it sounds like you are deep into burnout! And it's to be expected after a year and a half of having all of the caregiving duties on your shoulders! So glad you have reached out and are starting to look for caregiving support. It's very clear how much you love your mom and kudos for you for stepping up to the plate and choosing to care for her! Everything we do is a choice! I imagine you don't get a lot of reinforcement - so you're getting it here. You are a super woman! Own that. Feel good about it.

And also know that you can choose to care for yourself too.

First - the issue of your mom not wanting anyone else to care for her. This happens a lot. She's more comfortable with you and feels safer and secure. It's understandable; she's very vulnerable. But at the same time you cannot do it all.

I've been caregiving for my grandparents, parents and sister my entire adult life. My Dad just passed on last June so now I'm just helping out with my aunt and uncle and friends etc. But believe me - I understand what you are going through. My parents lived with me, Mom died in 2013. My oldest sister had Cushing's Disease, obesity and numerous health problems. It's so hard to try to be caring for so many at once and trying to meet all the needs. My biggest lesson was to learn this truth (which is my motto - you can quote me on this!)

Seriously - you can do so much - and you do all of the most difficult and most joyful things - BUT you cannot do it all. It's not humanly possible. So first you need accept that and then your mom needs to accept that.

Sometimes lovingly having a heart to heart (your recent ER visit is a good conversation starter!) with your mom explaining you are there because you want to be, but you cannot do everything or you will be very ill and unable to do anything. Then work on getting help to care for her. Is she on Medicaid? Have you talked with her case worker? There are many in home services - even just help bathing would give you a break both physically and mentally.

It does take awhile for new paid caregivers to learn the ropes, but they eventually learn (I know - it's frustrating when you feel you are still doing the work and paying them also!). If having a heart to heart doesn't help with your mom - is there anyone else she trusts who could talk with her about the need to watch out for you? Another family member, friend, faith community leader, lawyer, case manager etc.?

In terms of support for you, here are a few resources to check out:

Community Resource Finder www.communityresourcefinder.org
Eldercare Locator (in case you need to find your local area agency on aging to ask about in home services, local caregiver support groups etc.) www.eldercarelocator.acl.gov

I've given you a lot to think about, so I'll stop here for now, but with one more lesson I learned while intensively caregiving for 10 yrs. I can't expect my car to run on empty and I can't expect myself to either. I have to keep filling my tank - and so do you. Try to be consciously aware of what fills your tank - snuggling your fur babies, sleep, break from caregiving, reading, movie, call with a friend - etc. More on this in another post!

Take care and please let me know if you have any more questions, thoughts, experiences. Stay in touch with us! We are here for you!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

SeresnaS885155 · ‎04-16-2019

Thank you to be here for support. Just found this site. I’ve been caretaker for mom and dad steadily for 4 plus years. I’ve just been diagnosed with cushions syndrome and am following up. The fatigue,aches, weight game is now not good. My parents chose to move 90 miles away and I cannot drive with out falling asleep. Guilt plays a big part and is ruining my heath. Help please

agoyer · ‎05-23-2019

@SeresnaS885155 I'm so sorry for your stress and also the health issues you are dealing with. My sister had Cushing disease, so I know the multiple health issues you are dealing with. I hope you are getting good treatment. But you really do need to take care of yourself as you battle that illness - there are things you can't do safely - like as you say, driving long distances without falling asleep. Plus, I know your energy levels are probably not too high.

Have you been able to have a heart to heart with your parents and explain what you're dealing with in terms of the Cushing syndrome? I understand the guilt, (I'm quite familiar with it myself from many years of caregiving!) but at the same time your body is putting the limits on you - it's not that you're choosing stay away.

Do you have someone who is your eyes and ears on the ground there - where your parents live? That is crucial for long-distance caregivers. Maybe a neighbor, friend, faith community leader, or even a paid geriatric care manager (you can find one at the Aging Life Care Association website).

I hope you'll check out the questions and posts in the "expert series" this month that I'm hosting, including my posts about caregiver stress and how to find respite care!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

JaneCares · ‎04-17-2019

@SeresnaS885155 wrote:
Thank you to be here for support. Just found this site. I’ve been caretaker for mom and dad steadily for 4 plus years. I’ve just been diagnosed with cushions syndrome and am following up. The fatigue,aches, weight game is now not good. My parents chose to move 90 miles away and I cannot drive with out falling asleep. Guilt plays a big part and is ruining my heath. Help please

Hi there,

You have a lot going on! I hope the doctors you're seeing are explaining your options for treatment. I'm not familiar with Cushings Syndrome: is falling asleep while driving part of what happens? Or are you sleepy for other reasons? I found out some years ago that i have sleep apnea, and i was prescribed a little machine called the CPAP, and i wear a mask all night that i got used to quickly. Now i sleep like a baby, and dream vivid dreams, and feel much more energized in the day time. Just a thought: day time sleepiness is a symptom of sleep apnea. Not that you need another disease, but, the cure is wonderful sleep and daytime alertness.

So your folks moved 90 miles away? Hm. Are they pretty independent still? You've been helping them for 4 years, yet they moved further away? Do you have any siblings? If so, i would hope that a brother or sister could chip in and help while you're dealing with your own health.

Is there any chance that there is public transportation to your parents' new home? I live in a very rural county, more cows than humans, and there is a van that goes from one end of the county to the other for free. That's basically a 3 hour drive on two lane roads. I hope there's a way you can get there without risking falling asleep.

What part of caregiving and your situation is the most trouble at this point? What do your parents need help with? Chores, shopping, AND help with bathing and dressing? This caregiving forum is full of good ideas. What would be most helpful?

So glad you wrote! Please tell us more, and God Bless You.

Jane

intersan · ‎04-10-2019

When you mentioned that your mother is morbidly obese, I thought of the program I've seen called "600 Pound Life". It shows how difficult it is for these adults to even get out of bed, yet they keep eating. The caregivers, usually family members, are totally stressed. These obese people seem to have incredible demands too, otherwise they get angry. You didn't say how old your mother is, but you are too young with a profession to lose time if you have no one to support you. I don't know, but you might have to consider nursing home care because she is immobile and has so many medical issues. I really feel sorry for all that you're going through, but it seems you're doing all that you can.