No one cares

Neverends

Need to vent. Truth be told, this caregiver position holds no joy for me. I'm not her hero nor do I want to be.  My mother is a shell of herself and there is no end in sight.  Help? What help. Her other children are living their lives saying how bad they feel for me. Really? I'm here by myself taking care of OUR mother. I'm tired of being up all night while she paces and flushes the toilet, takes her soiled brief off and uses it as a washcloth. I don't want to see or wash my.mothers private parts while I'm being berated by her with all kind of awful names while she is trying to bite,slap and pull hair.  Redirection? I've tried it all. It's exhausting and most of the time futile.  Meds? Helps some but as you know you can't keep.them knocked out all the time. That poses  another set of problems that I don't want to deal with. Hired help? There is no one to help. They've all skipped town and I don't blame them. Am I depressed? Heck yes, who wouldn't be.and I am really sick of seeing ads to be their "HERO" because she raised me and now it's my turn. No one  knows what you go thru as a caretaker and no one cares.

Tfreedz

Vent away Neverends! We here know what it’s like. The exhaustion, stress, despair...yup we know what that feels like. Sometimes just getting it off your chest helps mentally. You desperately need a break as all full time caregivers need! Please revisit looking into respite care for your mom. Most all MC’s offer up to a month of respite care for your LO, who knows it might become long term. Or a day program might be a solution. I would not give up on looking for in house caregivers. Go to care.com or any HHA companies in your area and keep looking, you need some relief! Sending you a big hug and listening ear, hope something gets better for you soon!!

mommyandme (m&m)

I understand…we understand! I care… we care…wish there was more I/we could do than just listen.  This is so hard, putting our lives on hold or even wearing our lives down until the end. 

I am consistently nerved up these days. I can feel the physical toll my emotions or lack of emotion is taking on me. My stomach is nervous or something like that even when I’m “relaxing”. I want to scream or cry to let off some of the pressure.  

I do have some respite time this morning.  I ran away from her house as fast as I could. Still I feel nerves.  Yet, I find I can think about solutions to the many issues a little better when not in her presence.  And even though I’m thinking about her and the situation, not breathing the same airspace is helpful. Not smelling the same smells and/or seeing the same atmosphere helps. 

Somehow you must try to get significant chunks of time away.  Both of you will benefit. My mom definitely gets sick of my face and voice too.  Your emotional and physical health are important, maybe more than your LOs. Weird to say, but could be true.  You have a life that’s important. I’m sorry your siblings haven’t stepped up.  May be time to demand it. 

Please keep venting and talking, you’re helping us too when you do.  

Neverends

Thank you so.much for listening. I just feel like my life is coming to an end and she will still be here spinning in circles. Ugh, I just want this to end. Just so beaten down over and over and over again. I haven't cried in years.  Something needs to give somehow.

SusanB-dil

Hi Neverends - welcome to 'here', where you can vent.  I care. 

check on resources in your area.  Obviously, you cannot continue on like this.  Check on the 'solutions' tab up above here.  and i know that others can probably weigh-in better than I on phone numbers and other avenues of resources.

PickledCondiment

Welcome Neverends - You and I are in the same place, caregiving gives me no joy.  That said, I'm learning to cope and keep my sanity by taking care of myself and being proactive. I'm also an advocate of researching the issues and creating a plan on how to move ahead in the world you now both inhabit.

Your post mentions the other siblings and their trite platitudes about how bad they feel for you.  It is time for you to tell them they need to step up and do their part to care for their mother.  I know, easier said than done but taking a strong stand and essentially telling them will help you establish much needed boundaries. 

Ok, time for hard questions. You didn't mention who oversees your mother's medical and financial affairs. Does she have a designated POA for her financial and medical affairs? Who has control her checkbook, does she have assets,  own her home, have a trust? Have you met with an elder lawyer? If not, you must get your mother's affairs in order now.  Should she need more care than you can provide, the money issues will become very important instantly. 

Do you have a relationship with your mother's PCP?  Has she seen a specialist (Neurologist)? There may be Rx available that would help your situation more bearable for both of you. 

Please keep posting, we're here to help. 

Neverends

Ty for replying, I am her POA for medical and financial. She has no assets, no savings. Monthly social security and military pension which I control. She lives in my house, retired early from nursing to care for her. She has great health insurance  from the military. Asked siblings to help, flat out "We can't, just place her".  I worked in long term care for 17 years,I know all about it. I started an application  with the veterans home  where I worked 2 years ago, she was accepted  and is on the list. Covid hit and everything  is at s standstill.  So here we are.  I'm sorry your going thru this too. No one understands. Except the ones in the trenches.

Neverends

Her PCP seems so lost when I talk to him about her. I know I should find a different  doctor but I'm too exhausted  to care anymore. Nothing can be done for her. Seroquel, buspar  and Ativan. It's a balancing act. BP meds. Diabetic with insulin and coverage. Severe arthritis, dementia with psychosis and behaviors. Incontinent of everything  doesn't sleep. Sundowns most of the time.  Hates the dark, hates the light, hates me.  I hate this. I want out.

Love&Light

Neverends, I care and I see you. I am so sorry you're at this point. Take us and our comments with you as you go through the days.

When I'm at this point, I remember you people here in this wonderful forum and I feel a little less desperate and alone.

jordansfca

I am sorry you are having a hard time. It sounds like you do care.

I don't think caregiving is a joyful thing. It's hard. 

You need to find help so you are able to have some time for yourself and to just breathe.

You don't say what support systems are available to you. I would suggest starting with calling the helpline associated with this website. They can give you advice and help you to get the assistance you need in the short term. They can also help you decide what you want to do long term.

Good luck to you.

ButterflyWings

I truly feel your pain, exhaustion, numbness, and frustration. You hit the nail on the head with your screen name too...it really seems like this. Never. Ends. I know some day that it will, but which one of us (DH or me), will survive the longest in the face of his AD? And if it is me...which "might" be, since I don't have the terminal disease and am 2 decades younger...what kind of shape will I be in physically, emotionally, spiritually if so? 

And, yes, outside of this community of those in the same boat, it seems like no one understands or cares to. To add insult to injury, I have experienced some of his colleagues and family members trying to take advantage financially and in other ways, which is just lower than low. It makes me really question humanity. Not only do they not care, those (few) have been opportunistic which adds to my already heavy load because if there's one thing I won't do it is to shrug my shoulders at kicking my DH when he is down, or trying to take advantage of his illness and my overwhelmed-ness (not a word, sorry about that). Some people just suck.

Vent away. We have to blow off steam and truly get some relief, and temporary or long term respite. Here are a couple of thoughts to hopefully give you a bit of relief at least:

1)Is your mom on hospice? It sounds like she would qualify and as you may know, this provides some support via a team to assist you weekly with: 

• a visiting nurse (1-2 times weekly), and 24/7 nurse on call if needed
• delivery of ("free") meds and incontinence + hygiene supplies, (briefs, wipes, toiletries)
• a bath aide who can also do her laundry, lunch prep, linens, grooming, dressing etc. 
• equipment e.g. we have a shower chair (he won't use), roll-ator, wheelchair, bedside commode that we use over the regular toilet -- has stabilized the damage to floor, etc.

Please give it a try if you have not had hospice evaluate her for that support to help you both. It has been a real blessing for us the last few months, stage 6d...stabilized from a real rough period but still terminal and declining so he still qualifies for now. Every resource helps, I've found.

2)Also, have you tried any resources through your local Agency on Aging? Here is the link to find one in your area. Find Your Local Area Agency on Aging This provided us with: 

• some regular food deliveries, both prepared meals for him and fresh produce + staples, 
• approval for a paid caregiver HHA help so I won't implode trying to do it all with no other help, (but you're right -- many of them seem to be on hiatus right now too -- but you may luck out). In the meantime they are paying me for those hours. A temporary spousal waiver, but big help since I am here with him 24/7 doing it all anyway.
• check-in calls from social work team to see how I'm doing and to find other resources.

I wish I did not understand exactly how you feel. But I really, really do and unfortunately can't agree with you more that "the system" is so uncaring. PWDs and caregivers deserve better. Stay strong. This won't last forever and you must survive this. Sending you hugs and strength. We are all in this together, though apart and we really do care.

Neverends

All of you thank you,thank you thank you. I'm sorry if I said some gross stuff but I know you get it.  This really helped me,truly. Sending my hugs and blessings to all of you.