Feeling foolish needing care help

CatsWithHandsAreTrouble

I'm just personally having a bad morning so far and no one to talk to so here I am again to bemoan. 

We're getting another new aide today and she'll be here for a full day (eight hours). It's been three months since we've had someone here that long while I'm also here. I've so many thoughts running through my head about it, most of which are not very nice to myself.

I feel like such a fool for not being able to care for my mom on my own and feel terrible "pawning" her off on someone else. My energy levels and ability to focus just has too big of a variance day to day, hour to hour, that I know that I'm not a reliable caregiver for her. I know that but still feel like I'm a failure.

I also want to be able to do my own thing again. I've pretty much stopped all my hobbies, something numerous people say not to do while being a caregiver. I just didn't have a choice. I hyperfocus on them, oblivious to things around me and sometimes have a hard time coping with "reality" after coming out of the hyperfocus. That's obviously not good for taking care of someone with dementia, it's hardly good for myself.

I really hope this new aide is good and that gets along with mom. We both need it.

LaurenB

I'm glad that you feel comfortable trying out a new caregiver and hope that this works out well for you.  Good luck today!  You are caregiving for your loved one even in the presence of other caregivers.

GwendolynD

Hi, I hope your new aide is a good fit for you and your Mom.  Please don't feel guilt about wanting to have some time for yourself!

Sherry Neal

I’m so sorry you’re having a bad morning. Guess what you can start your day over any time you want to. May I recommend a book I am actually reading right now,  Loving Someone Who Has Dementia,” by Pauline Boss. If you are interested let’s do this together and support each other in this journey. We can discuss this book this is a life changer. Love and prayers!

CatsWithHandsAreTrouble

Thank you Sherry. I've seen that book by Pauline suggested before. I haven't been able to find much time to sit down and read lately. I think if it's available as a PDF, I'll get it soon. It does sound like a good resource!

Thank you too Gwendolyn. It's so challenging finding time for myself between taking care of mom, work, the cat, and the house. That's one reason why I want an aide for mom, so I can free up more time for myself. If only I can tell my brain to stop talking negatively to myself!

Thanks, too, Lauren. Things are going okay now with the new aide. Not sure how I feel about her just yet, but it is the first day after all. Mom seems okay with her, not anxious, just hungry haha. For right now I'm observing and offering suggestions as I see it.

Arrowhead

DO NOT FEEL GUILTY. YOU ARE NOT A FAILURE. You have been handling a difficult situation to the best of your ability. There comes a point when you can no longer provide what is needed and it is necessary to turn the job over to someone else. You are not pawning her off, you are getting her what both of you need to continue onward. Be grateful that you have had the strength to do what you have done. Know that you are doing the right thing.

GothicGremlin

Hi there Cats -

You're not pawning your mom off on someone else. PWD have a lot of needs, and it's so difficult for only one person to be responsible for all of those needs, all the time. This is a sure path to burn-out and health problems. Bringing in an aide helps both you and your mom. For your mom it means she'll have another person to engage with, and for you it will clear up time so that you can have some time to yourself.

We as caregivers have to look after ourselves as well as our PWD. As someone here has said (I can't remember who it was), "we're in a marathon, not a sprint." 

CatsWithHandsAreTrouble

Thank you everyone for your kind words. I'll try my best to take it to heart. I'm really struggling again today.

Two weeks ago we had an absolutely amazing aide come in just for half a day. She was fantastic! She knew how to engage with mom, got her interested in a lot of things, kept her calm, and got her to go on an hour (!!) long walk. While mom was resting after the walk, we chatted a little about being caregivers and she brought up me being paid to be mom's primary caregiver. I told her I couldn't do that and it felt like she was berating me for my very true and honest reasons why I cannot.

She then asked me "don't you care?"

I do. Very much so. Probably too much. And that just wrecked me. I can't stop thinking about it. This amazing person told me that I'm not good enough (or at least I took it as such).

It took me an hour to get out of bed and get dressed, whereas on a good/normal day it would take me ten minutes. I feel so pathetic and I am distressed that I keep coming here and crying about everything. I want to go to a doctor for behavioral health but I don't have a doctor nor do I have time for an appointment. I don't want to lose my hours at work, especially now when it's our busiest time of the year.

I just can't do anything and I'm tired of it. I'll probably be rereading everything said here multiple times today for some pep talk. I don't know what I'm going to do.

mommyandme (m&m)

She asked you “don’t you care?” about what? That you’re not getting paid? Or that you’re hiring in help for your mom therefore you must not care about your mom? I don’t understand…

If the latter is the case let me say…I care so much about my mom that we hire help to come in.  If I didn’t I would not be able to manage her care very well.  I’m mom’s primary caregiver and many day time hours I’m simply not there.  I have felt sad leaving her sometimes but I know that if I don’t I’m no good to either of us.  I’m afraid that although your great caregiver is wonderful, at least while you’re there, she doesn’t truly understand what’s going on with the dementia caregiver family dynamic.  IMO if caregivers don’t get respite, a disaster is waiting to happen. Call me foolish, I’ll take it amongst the many other things I am… lololol

I’m sorry for your pain on this journey. You do not need to feel bad about yet another thing, coming here with your trials and tribulations.  Don’t put this place on your list of worries.  This is a worry free outlet. Keep on coming here! 

jfkoc

Get all the help you can!!!!!

It will benefit everyone.

CatsWithHandsAreTrouble

Thank you m&m. I'm not sure what she meant by her question. I took it to mean "don't you care about your mom;" I didn't get a chance to ask for clarification, it was so out of left field, it took me by surprise.

I don't care that my time with her isn't being paid for. I'm fully employed and while yes, I want to earn more income, I want to utilize my college degree, the one I put myself through with (mostly) my own money, the one I worked on for ten years driving over 300miles a week for. That's what I want to spend my time on, not her. That's what I know how to do and consistently, not being a caregiver.

Maybe I'm ungrateful, maybe I'm too picky. But this isn't what I want my 30s spent on.

CatsWithHandsAreTrouble

I agree JFKOC! I'm trying to get as much help as possible. I know I'm not enough and I want mom to be as well cared for as possible

Iris L.

CatsWithHandsAreTrouble wrote:

I just can't do anything and I'm tired of it. I'll probably be rereading everything said here multiple times today for some pep talk. I don't know what I'm going to do.

You are in a depression.  You must get some help!  There are all kinds of help.  First of all, you must not listen to casual talk from outsiders, no matter how "smart" they seem.  Read the threads from members and you will realize that what you are experiencing as a caregiver is normal and is to be expected.  Read carefully how they got out of feeling bad about themselves.  This is how I got out of my own deep depression, which lasted for nine months!

Replace negative thoughts with positive thoughts.  Make positive affirmations and repeat them to yourself, as a mantra.  Meditate on these positive affirmations before you go to bed, and whenever else you can.  This is also what I did, and still do. 

Some members consult a counselor or therapist.  If you do, be sure to get one who understands caregiving, especially from your young perspective.  Most members would encourage you to make provisions for your mom, and to continue on with your life.  You have only one young life.  All too soon, time will get away from you and you will have nothing, but be ten years older.

There are online counselors.  Your city or county probably has low-cost counseling.  Also, the Alzheimer's Association has Care Consultants who are available for guidance and encouragement and for help with sorting through care options.  They are master's degree level social workers. Feel free to call on them for guidance.  They are available 24/7, and there is no charge for this service.

Antidepressant medication is available for some people.  It is not a failure.

Never think that getting a paid caregiver or other caregiver is failure.  Dementia is a serious and difficult condition, for everyone concerned.   Use ALL the tools at your disposal!

Iris L.

elliotlh

You can't care for your mom as best as you can if you are not being taken care of yourself. "You can pour nothing from an empty glass" Any decision you have to make for a loved one on their behalf will be difficult, that is just the nature of this disease. But you must remember that you are already exonerating much of your resources, have grace for yourself too.

CatsWithHandsAreTrouble

Thank you Iris, you're a wealth of knowledge! I've been working on getting a therapist for a few years now, researching different types and such. But that was before mom's diagnosis. Now I have to find time to research again for my new aspect of being a caregiver. Is the Alzheimer's Association you mentioned the same as the helpline? I've called them a few times and was unimpressed. Maybe it was just a bad time when I called. I'll keep trying though! Thank you!

CatsWithHandsAreTrouble

Thank you elliotlh. So true. I'm trying to figure out how to get myself taken care of while making sure mom's taken care of. It's challenging for sure. I know I've a lot to still work on towards that. A journey of a thousand miles begins with the first step, well I'm dusting my trekking shoes off!!

Iris L.

Cats, when you call the Helpline (yes, it's the same # as for the Association), ask specifically to speak with a Care Consultant.  The first person you speak with might be a volunteer.  You might have to leave your number so the Care Consultant can call you back.  They are probably on-call after hours, but still available.

Iris

mommyandme (m&m)

I think other arrangements for your moms care, other than you, is what you should continue to work on.  A tired, resentful caregiver isn’t any good for her.  Not that you are not good for her or that you’re resentful… but when you know yourself and what you need and are ready for, take a stand and be confident in your choice.   I wouldn’t have spent my 30s doing this for sure!

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JJAz

It's called respite care and EVERY caregiver needs it, whether they get it or not.  All you are doing is boosting your reserves so that you can care for her longer.  Bravo for you!

JJAz

And if your feelings of being overwhelmed and lethargy continue, talk to your doctor about an SSRI antidepressant medication.  It doesn't make you feel altered, you will just feel like your normal self again.  Many, many caregivers benefit from this medication.

CatsWithHandsAreTrouble

Thank you everyone, I'm truly blessed that we are able to be here together to commiserate and share ideas. 

I've recently discovered that the person I thought I was actually was just other people's assumptions about me. It's been a lot to unpack and not knowing myself has definitely lead to burnout with caring for my mom. I'm trying my best to find and firmly set my boundaries.

The agency we're using to find in home aides is having a hard time getting people for us (ironic since the last adie said the company didn't offer much hours). The woman who was supposed to be here today is out sick again and presumably there's no replacement.

The aide we had for Wednesday I asked to be dismissed. We were just not meshing well together and I didn't want that stress. I constantly felt like she was trying to mother me instead of being a copilot in caring for mom. I'm upset that I let the "help" go, knowing how hard it is to find people, knowing how hard it is for me. It is what it is. 

I'm still feeling fatigued but not as depressed as the last two weeks. I'm currently working out how to get an appointment to get a doctor. I've not had a PCP since the start of Covid so I'm sure there's a lot needing to be caught up on.