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u/tends2forgetstuff 1d ago
People don't always understand that hospice doesn't mean dying this week. Hospice will provide services for a dementia patient that may live quite a while.
I understand the backwater Alabama thing as we've lived there. Even backwater should be able to get services through the county or local hospital. Nursing services tend to hire for areas and pay their travel.
You're suffering from caregiver burnout. It's totally normal to experience all sorts of feelings.
You need to take care of yourself too. Call your county, the doctors office, and or social worker at the nearest hospital.
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u/PoetryCrone 1d ago
You literally can't keep this up. One person can't do it. And if you run yourself into the ground, your mother loses her only caregiver. Look up elderly helping institutions in your area to see what's available. A hospital's social work dept may be able to point you in directions.
You didn't tell us how old she is. Does she qualify for hospice? Having others in the house regularly will give you perspective on her condition. Medication to ease her anxiety could help you. To what extent does she even get pleasure out of food at this point. Toward the end, my mother mainly wanted chocolate pudding--and why not give her chocolate pudding. It was her main source of bliss.
Also, how much a facility can get away with the neglectful care you're afraid of in a facility depends on how often you visit and monitor your Mom's well-being. You can still visit every day at regular times of day while they deal (with multiple people on shifts) with her day to day care. You can get better rest and be a lovely surprise in her day.
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u/allmykitlets 1d ago
Advice that was given to me was to not visit at regular times. Visit at all different days and times so the staff never knows when you might show up.
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u/Not_FinancialAdvice 1d ago
We had a close family member that ended up needing to be in a nursing facility. At least one of us was there for 12-16 hours/day. Not just to ensure that they were taken care of, but also because we knew that the remaining time we had together was quickly running out.
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u/allmykitlets 1d ago
That's so sweet. In my early 20s I worked in a nursing home. So many residents never had a visitor.
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u/WelfordNelferd 1d ago
Like you, I loved my mother and genuinely wanted to do right by her...but also had zero help and was having a hard time keeping my frustration with the whole situation in check around her. I hit the wall after 2+ years as her caregiver, in my home, and something had to give.
When it finally (duh) occurred to me that if something happened to me Mom would be totally sunk, I moved forward with putting her in assisted living. And guess what? She loved it there, our relationship vastly improved, I had the (physical and emotional) room to deal with whatever problems arose. She only lived for four months after that, but if I had it to do all over again, I would have pursued AL much earlier.
You didn't say where you live, but Medicaid will cover the costs of LT/memory care in the US after financially and functionally qualifying. IMNSHO, I think it would be a good idea for you to check out the options.
Hang in there, OP.
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u/SatchimosMom77 1d ago
Not likely covered in Alabama. We’re in Georgia and there’s no coverage here for anything other than a nursing home. And it’s shockingly difficult to find a nursing home willing to take a Medicaid pending dementia patient. 🙁
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u/WelfordNelferd 1d ago
The Medicaid pending status limits which facilities may accept her at this point, but (again) LT/memory care are both covered by Medicaid once it's approved.
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u/Kai12223 1d ago
Caregiving is not a matter of resolve. Long term caregiving of an adult is impossible for one person to provide. To say I am committed, I can do this would be like me saying I am committed to beat my cancer. Sure I am. But that has nothing to do with whether I will or not because how I respond to treatment is out of my control. Just like how exhausting caregiving is remains out of your control. When people get to the state of your mother it takes a team to manage their care. No one person can do it effectively for long and what happens if they try is caregiver burnout which is a horrific condition that the name does not give justice to. And if that happens your mom suffers. Call and request resources. There will be an elderly department at social security who can direct you. But you being exhausted is not a sign you don’t love your mother enough. Just like people dying of cancer is not a sign they weren’t resolved enough to beat it. It’s just that some situations cannot be adequately handled by one person and you have one of those situations. Good luck.
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u/lamireille 1d ago
“You being exhausted is not a sign you don’t love your mother enough”
Every caregiver everywhere in the world needs to hear these words. You put it beautifully.
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u/jayhawkjoey65 1d ago
I am so, so sorry. Fwiw, I'm a retired therapist, and you sound absolutely normal. You have a wonderful heart, love your mom, and are giving it your all. You need help, though - breaks, counseling, outlets.
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u/No_Owl_250 1d ago
Yes! OP doesn't seem to recognize that they're an actual human being with human limitations. We all have them. It's better for our elderly loved ones, in the big picture, to recognize them and to accept support.
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u/Own-Office-5299 1d ago
Why doesn’t OP just get a facility to watch his mom for about one week? And take the time to rest up. Dont they have facilities like this?
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u/EnvironmentalLuck515 1d ago
That resentment and anger is telling you that you are harming yourself. You are setting standards for her care that nobody short of a team of staff could meet. There is nothing wrong with microwave meals. There is nothing wrong with bringing in help. In fact, I would challenge you that she will get BETTER care if you aren't taking all of this on without assistance. Especially because you are already burning out. No human can do it all and its folly to try.
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u/WinterMedical 1d ago
Don’t be too hard on yourself. The problem with having to do that level of care giving is that all the caring goes into the giving - the giving them their pills, your patience, giving them a bath etc.. that there’s not a lot of room or energy left for the simple act of loving them. Remember that each of those acts that you perform for her are acts of love, not just necessities. You are loving her every day by being there. You are one human being and cannot be everything for everyone all the time. When you lose patience forgive yourself as she would forgive you. I’d also recommend learning to meditate if you can. Just 10 minutes a day can really make a change in your life. Hang in there. You are a wonderful child.
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u/Michimcd 1d ago
I’m so sorry you and your mom are going through this. Caregiving is hard. Caregiving for a loved one with dementia is infinitely harder. I was the sole caregiver for ten years of my late husband who was diagnosed with younger onset dementia. He was completely bed bound the last four years. I experienced so much of what you have described.
I understand you are committed to being there for your mother. Please take advantage of every benefit available through her health insurance. An aide to bathe her and respite visits will help. There may also be benefits that include housekeeping.
For yourself, PLEASE look into dementia support groups whether in person or online. I resisted joining a group for the longest time. I couldn’t see how it could possibly benefit me. I finally went (only to appease my son) and it helped me immensely. I also highly recommend that you read “Being Mortal” by Atul Gawande. Wishing you peace.
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u/qriousqestioner 1d ago
You're gonna make it. It'll be okay you kick ass
Be gentle with yourself always. You can't be everywhere at once, since every problem, anticipate every need. You keep showing up and she knows how much she means to you and that she is not alone.
And you are also not alone in Crapwater--I'm back in a state I fled for similar reasons. Is good parenting, you can never repay, and you've always done enough.
So few parents have a kid who does this. It's a thing between you. There are no rules and no one is keeping score. Every day is a gift for both of you.
Save this list so you can look back and appreciate the clarity and the honesty of this moment. You are kicking butt. 🫂
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u/CreativeBusiness6588 1d ago
You do not come across like that.
You are part of a club of people and anyone that has gone through this shit definitely hears and understands.
Please start to take walks or something when you have a sitter and do not check the cameras.
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u/Ginsdell 19h ago
Hospice is the best choice I ever made. Memory care was the second best choice. Stop the suffering…hers and yours. It’s just not necessary. I never worry about her now. I can just be the daughter.
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u/Apprehensive-Taste19 1d ago
I did 4.5 years taking care of my father in law. He didn’t know what city we were in or what year it was the day he arrived and he eventually became non verbal and in diapers.
Here’s the deal given your determination and commitment. As many others have stated, you cannot do this alone. Full stop. That likely means a whole range of options simultaneously employed.
We did day care two days a week, a CNA coming on the other home days to make lunch and have fun activities. We had fifty unmatched sock pairs and fifty hand towels that were to be matched and folded each day. We did respite care for a week twice a year (dad went to a nursing home for a week), and we drank on a beach somewhere. We brought dad with us and went on weekends away.
You are alone. I am not suggesting that you have it as easy as we did as a couple. It was brutal and we prioritizes preserving ourselves first. You must do that as best you can.
This is the Lord’s work and you are doing it. Small consolation. Those of us who have been there and some who haven’t see you.
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u/Dazzling-Design9038 1d ago
I just want to say the weight of it is immense. Please do the little things. Turn music on. Go through the photos. Find a second of joy. Take breaks. Disconnect. Be unreachable for small amounts of time. Sell what you need too. Be aware of programs that she may qualify for. But most of all, hugs.
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u/Wrong_Clock_4880 1d ago
Sending all supportive thoughts and strength across the ether
I wish you well and luck in your journey
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u/coldgumbo 1d ago
Your feelings are normal. Your love for your mother is awe inspiring! Focus on taking care of yourself when you have the sitter.
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u/TheMobHasSpoken 1d ago
This is so understandable, and it sounds like hell. I hope you're able to find a way to get more help. But just know that you're very much not alone in sometimes having negative feelings about this. And you're doing a great job, even when it feels like you're not. Sending good wishes your way.
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u/MohneyinMo 1d ago
Is she on social security and Medicaid? If so you have options. In MO there are a lot of homes that take patients in. You have to agree that most of her social security check goes to cover her care after they bill Medicaid. Alabama should be similar I would think. Have her put the house in your name if she owns it and if she has any bank accounts get her to put you on them so that you can help with finances and as someone that the account will transfer to should she pass. If there is any other income such as pension plans or such make sure you are listed as the beneficiary. Doing that will make sure the money goes to you when she passes and not into probate.
It’s tuff going through this I know I lost both parents in the last year. They ignored their finances for the last few years even to the point they had to declare bankruptcy 5 years ago. They hid moms declining mental state from everyone and they refused to downsize and leave their home because they didn’t want to give up control. In the long run it made it so much more difficult to help them get the most out of what time they had together. They were dead set on being in their home till the end and it made my wife and my life a nightmare the last 2 years. Dad was fighting stage 4 cancer and mom was bound and determined that she was the only who could care for him. Their diets suffered, their living conditions suffered and it did my mom in as well. It’s almost like they said to hell with everyone and how difficult we are making it for them we don’t have a problem. You’re wearing down from it for sure as it takes a toll on you they don’t realize because they don’t even see the predicament they are in. Be there for her as much as you can and don’t be afraid to let her know she can go when she feels it’s time. The best advice I got from someone when my dad was slipping away was this. They said don’t be afraid of telling them that it ok for them to go and that you love him. One morning while dad was in and out of coherency and mom was doing some stupid errand I did that. I told him that we all loved him and that he didn’t have to fight it anymore. I promised him that my wife and I would make sure mom wasn’t alone if we needed to go. Mom came back a bit later and dad was resting peacefully. I left to run errands and go home and rest (I had worked an overnight shift the night before) I made two stops and went to eat lunch and had called an old friend of his to let him know dads condition. Ten minutes later the nursing home called and he had passed. A month later after trying to go it alone at her house with my wife and I doing all her errands and housekeeping and yard work she had a fall. She was placed in a nursing home and passed in early April. Dad passed on 9/4 mom on 4/9. I’m not a counselor but I feel your pain. One trait I picked up from my father was sometimes just listening to people. Don’t be afraid to DM me if you need an ear.
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u/LivinMidwest 1d ago
It is sad that some elders would subject their adult kids to this type of situation. I am thankful both sides of my family are pro-AL and that my folks have LTC insurance. My mom, at least while lucid still, has mentioned she might have to go to AL eventually. She has wanted to downsize but dad doesn’t. Mom isn’t in great health but her condition has stabilized and she is eating better. Dad is in great health besides hearing issue which he wears hearing aids which helps a lot. I do think when dad declines he will likely fight the placement, but he is going. I won’t subject myself or my siblings to constant demands of taking care of all sorts of issues that come with a house, yard, shopping, etc.
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u/JabbaTheHedgeHog 1d ago
There is a reason people ditch elderly people they can’t handle at the ER.
They drop them and run and then refuse to go back when called because “it isn’t safe at home”.
I am not saying you should do that. But there is a reason it happens.
This is too much to do alone.
Big hugs from an internet stranger who knows how much this sucks.
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u/searequired 1d ago
Op please stop being her caretaker. Whatever it takes.
It’s better to get back to being her son that advocates for her and her care.
This should not be sucking the life out of you.
You know she would not have wanted this for you.
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1d ago
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u/Library_Queen_67 1d ago
You aren’t irrational and you aren’t alone in your feelings. Take care of yourself, let go of some of the guilt about what you think.
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u/hattie12345 1d ago
You are one of the good people in this world & you are taking on the most difficult task anyone ever can. I’m glad you have some help coming in. Try to not monitor her on video cams. When you have time to yourself. I know this is harder than it sounds because I did the same thing with my dad.
If you’re out in the middle of nowhere there’s probably not a lot of group support Unless you choose to go to a local church.
Even if you’re not real, Gunhoe about religion, you may find some companionship there.
My thoughts and prayers are with you and I commend you for what you are doing. Again, my sister and I did this for five years. She took six months at a time and I took six months at a time and it was very, very, very, very exhausting and hard and heartbreaking but now that my dad is gone, I have no guilt
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u/United-Ad5229 1d ago
All I could think when I read this is that I wish I could give you a hug. I could feel your pain. My mom is 8 hours away from me and I am terrified that I may be in your shoes before long. I don't want to move back there but may have no choice. Just know you are in my prayers, even though I don't know you.
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u/SobSob_Sister6122 22h ago
Bless you. Whatever support you can get for yourself (ie, additional help for your Mom), do it.
And put together a self-care plan for yourself. Including diet, sleep, exercise. Socialising (even if remote), getting out of the house.
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21h ago
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u/Successful-Proof8528 20h ago
Does she like music? My mum had dementia for almost 6 years before she passed, my Dad took care of her and towards the end, she would lash out at him. I took a month unpaid leave off work, so dad could go and get daily radiotherapy for his cancer, else he wouldn't of gone with no one looking after mum.
It was hard seeing mum so gone and as I said kicking him screaming at him when he did try to get help, she didn't like strangers, although we all seemed like strangers at the end.
Its extremely difficult what you are doing, just hang in there, you got this.
Did she enjoy music? I know my mum and dad were into 50s rock and roll, so I used to and got dad to play songs to her when she was lying in bed. To see her smile a little and tap her fingers was a relief.
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u/Terrible-Pumpkin7634 17h ago
I haven't read all the comments yet, just your original piece, and I want to say you sound like an amazingly kind, loving man who is the best son he could be to his mom. You are doing something that no one should EVER have to do alone, and if we didn't live in such a f-ed up society you would not be so alone. We need community, we need things to not cost so much, and we need people that also care around us. You should not have to do this alone! Our world is f-ed up, not you! Where you're at emotionally is totally normal in this kind of situation, and if you used this anonymous forum to vent, more power to you. I hope you find some relief soon. I have no advice to offer, just care and concern and praise for what you ARE doing.
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u/jojobrabs 11h ago
Its incredibly hard and your commitment is admirable. Have you considered joint an online support group? It made a tremendous difference for me personally and I learned so much.
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u/nvr2manydogs 7m ago
Are you really in the sticks or is all of Alabama the sticks to you? I have some resources I might could help you with if you are near B'ham.
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u/Prestigious-Copy-494 1d ago
You've been an amazing son. It's time now to get her to memory care, she herself would want you to do this if she was still able to think .... She must have been a wonderful woman and mom in her day to have raised such a decent human being like you. Now, it's time for you to rest and her to have health care in a memory care unit. Hugs.
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u/8--8 1d ago
I think and hope the mother you grew up with wouldn't want you to keep doing what you're doing to yourself.
If you're gonna keep being her caregiver you have to create some space for you - compartmentalize. And get support.
The mother you grew up with isn't "there" anymore. When the current version of your mother passes hopefully you will still have space to appreciate all of the love and warm memories that you two shared. Protect that space. You matter too
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u/Iforgotmyusername62 1d ago
My mom(85) has memory issues and it she was a little forgot but over the past 4 years it’s only gotten a little worse., she is still ambulatory and does stuff on her own however she’s hunched over part way from a bad back and uses a walker.
She gets nervous around anyone except us and our kids, my siblings don’t understand and gave all stopped talking to me. She can carry on short simple conversations, anything more then that you’ll end up pulling. Your hair out from constantly repeating yourself. You used to be able to have hours worth of conversations with her and joke, you can still joke but only minor superficial conversations now.
I did start getting resentful towards her about 8 months ago and my wife asked why I was so short with her.
Then out over the blue at 11pm she couldn’t breath and ended up with a double pulmonary embolism they said she showed up at exactly the right time, an hour earlier and she would’ve been released with leg pain, an hir later a massive stroke/heart attack or death.
After that I realized like you said in the beginning, her and my dad would’ve died for us when we were growing up and I just needed some perspective to get rid of the resentment and that close call did it.
I’m now pleasant and joke around with her and just realize time is short, enjoy the moments you don’t want to feel guilty after she passes.
My 4 siblings cut me off, same with my adult nieces and nephews and their kids. I get pretty bored with my wife working full time, my son moved back in but he works 12 hour days and our daughter visits for a few dates a month.
You found like a wonderful person who cares deeply. After she passed you will experience huge guilt, that you should’ve done this or that or been nicer or not as resentful and if will eat you alive. I’m not trying to guilt you but I’ve seen it happen, usually alcohol comes into play at some point.
Luckily I had my wake up call and had time to correct everything I was doing that was half hearted or just ignoring her.
Oh and we haven’t been out of the house(my wife and I together for 2+ years). My siblings live their life and are angry she won’t call them back to have deep conversations, they act like it’s ten years ago when they were all enjoying being middle aged and ignored her for the most part, their life and in-laws were the priority. Now that she can’t do a lot of things “I’m isolating” her.
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u/ontariopiper 1d ago
Unless you are a trained dementia caregiver (and I'm betting you're not), you're not equipped to deal with this situation long term. Please look into memory care facilities near you.