I'm at the end of my rope. I've actually been there but have managed to hold on somehow. I've taken care of my mother in her house for almost 7 years as her dementia has worsened and worsened. I've not had any help at all and haven't been anywhere without her for over 4 years. I never leave the house because I'm working 4-5 jobs at a time because I took on all of her expenses except rent.
She started becoming very mean years ago and now is simply an awful person. She denies everything she does and calls me names, every day with every single thing she does that is nonsensical or dangerous, or both, the weight in my shoulders gets heavier and heavier. I'm so exhausted and so miserable and so stressed out I can't even think straight enough to do my work without making huge, often expensive, mistakes. I feel utterly hopeless and I am utterly alone, both literally and metaphorically.
I've applied for my state's assistance in placing her four times and they've denied her every time, saying she's not "progressed" enough to qualify. This is a woman who talks to her dead parents, saves food for them, hoards newspapers to give to them, who insists she's just had a conversation with my (useless) younger brother (the one who completely disappeared 4 years ago when I finally told him I needed help with her), who leaves with her clothes crammed in grocery bags to go "home" - her childhood home that's 2700 miles away. I've had to lock up everything and now have to buy 3 different locks for 3 different doors because she's decided my dog is hers and she can do what she wants, which means letting him out near the street with no collar and no leash, something I've never done with him because he's a runner. Once she does one weird thing I know it'll never stop, she will continue doing it over and over. I have no way of protecting him from her other than keeping him locked up in the same bedroom I'm closed up in 24/7.
I've literally sacrificed my whole life in order to take care of her and in return I'm called stupid, a liar, an idiot, a bitch, and more often than not I feel so much pressure inside of me it makes me shake. I've become desperate to get out of here before it kills me. It's already ruined me, being around my mother constantly long-term made my older sister move out when she was 15, my older brother leave the moment he graduated, and made me leave Kentucky in 1989 to move all the way to Arizona. My dad drank to deal with her. I've spent my entire adult life getting as far away from my childhood as possible - I kept house differently, I married differently, I raised my kids differently, I strived to be nothing like my mother, I just wanted to escape all the dysfunction and hoarding and depression and manipulation I grew up surrounded by. And I had succeeded.
The moment I knew I had to be her caregiver, in her house, I felt as if God had picked me up and dropped me right back into that awful childhood. Different state, different house, different age, same dysfunction. I've been deeply unhappy the whole time I've been here but as she gets worse I get worse. I have so much anger towards her for things that happened years ago but I'm also fed up with everything here. She's never thanked me, not once, unless in sarcasm. She's never appreciated anything I've done or taken care of or paid for it solved. Angry landlords, pissed off doctors, bill collectors - they've all become my problem. I was prepared to reapply for state assistance but today as I stood in the backyard, after rescuing my dog again after she let him out without a leash, hearing her spit at me that he's her dog and she'll do whatever she wants with him, I felt something break in me. I don't yet know if it was a good break or another bad one but immediately afterward my first thought was getting her placed. I don't know where/how to begin. I know her check will pay for only the most run down of places, I've tried to avoid that, but I'm desperate. I have to get away from here.
Please consult with your state's Medicaid to see what she needs to qualify for their assistance as well as Medicare.
Please consult with her doctor to get her declared "mentally incompetent" so that it is documented that she needs helps from others.
Since she has problem behaviors, she may benefit from a short term stay in an inpatient psychiatric geriatric unit. They can help her to get established on anti-anxiety medications and therapy to decrease her emotional outbursts. From there, you can work with their social worker to have her placed in a memory care unit. Take whatever placement she is eligible for.
Consider starting to separate your life from hers: finances, insurance, housing... so your claims of "hers" versus "yours" will be easier to delineate when it comes to Medicaid.
I strongly question why you would even have moved in with her since you had such a miserable childhood and relationship but perhaps that was part of your conditioning . In any case, not cohabitatng will help with getting mom assistance. Move yourself and anything you want to keep out of the place. Then try the “er dump” method ..which seems cruel but also sometimes necessary. Don’t go along , just call 911 , perhaps be there to help give information. Will be better to be able to say that you came to visit and found her “on the floor” from a fall or whatever but this will establish she lives alone without someone to care for her. Call and ask about her condition ..don’t go to visit, say you are working and can’t if pressured. Don’t sign anything for her. Make it clear that there is no one to care for her at home so it is unsafe. They still may try to send her home but if they succeed, by just dumping her on discharge...repeat. If she truly cannot care for herself this should eventuallly work. Yes, she may be placed in a nursing home that you don’t really like. In some you may be able to optimize her care by just visiting , for brief periods, often. You don’t even have to really expose yourself much to her if you don’t want to...just check on her condition . This may be complicated during covid. ( I honestly wonder how well our seniors are fairing during this pandemic becasue vital family oversight is impossible ). But , your well being is at least as important as your mother’s. It is not your fault that she is in this situation and it seems as if , she was not a nice person even before the disease started to affect her.
Make a home for yourself. Take walks with your dog, you are lucky to be in a place where it is not cold for winter. Read, paint, crochet, etc ..some kind of hobby that will calm you. Perhaps volunteer at a dog shelter or make hats for homeless... join a church group or even online community since covid , but do something to get involved with people. Perhaps your own children ? You need connection to others. Perhaps sign up for an “inspirational quote of the day” or find one for yourself and write it prominently for each day. Make an effort to smile and be friendly to others..even just a grocery store or coffee shop...what at first you have to force , will start to become ingrained and people will initiate to you also. Having a dog might help with this as they are good ice breakers.
If you insist on remaining with mom ..at least get counseling which is available through Medicare for caregivers. Also they will provide some respite care. If she has LEwy Body there should be no reason she doesn’t quailfy .
please stop putting so much pressure and pain on yourself. You DON’T deserve it . You are a good person and deserve to live a happy life and not be miserable all the time. This is a toxic relationship and you need to free yourself. Let yourself be loved if only by your faithful friend , you dog. Don’t let this bad situation continue to spiral downwards.
Sounds like she is better suited for Memory Care which many SNF do not offer. I know this from looking for a placement for my own mother. Most AL facilities have a MC wing for those whose physical status is relatively good but whose memory issues make it unsafe for them to live alone.
Unfortunately, at least in Ohio, AL's are not required to accept Medicaid Waivers. They have the option to do so after a resident has been there at least 2 years and even then it is not a given, it’s up to each company. Talk to someone at your bank about how to budget to eke put your Mom's assets to last that 2 years.
Sell the house if necessary, if it is in her name Medicaid will require it be sold and the money used for her care anyway if she is not living there. I’m not sure how that works if she continues to live there.
In Ohio there is a program called Passport that has lots of assets to help the elderly. One program provides a free, 30 minute consultation with a law student. It was hugely helpful to me and saved us thousands in lawyers fees.
Check to see if your doctor's office has a social worker that can advise you, your Mom's insurance provider might be able to help. I got a lot of good advice from Catholic Family Services (they help anyone) and A Place for Mom can at least give you a few names to check out.
As a last resort you might have to call Adult Services and tell them your Mom is at risk of being left alone because you can’t cope. If nothing else you might be able to get into a respite program.
Good luck and let us know what happens.
1)If you feel like you can handle the amount of time it will take, contact a memory care facility, fill them in, get them all of the information they need, ask for them to come over for an evaluation. Tell your mom a “friend” is coming over for tea/coffee, whatever.... You have to take care of you and your well-being.
2) I am not sure what the elder care laws or children responsibility laws are in Arizona but you could call adult protective services and let them handle it going forward. The almost beautiful part of dementia is your mom will most likely forget that a family member placed her in a memory care facility and eventually you(if you wanted) could have a better relationship w/ her.
3) It sounds like you are most likely fighting a lot w/ her. If she’s doing something wrong but it’s not hurting anything, stop arguing w/ her. Do a lot of things behind the scenes and “jump into her reality.” This is a fantastic technique I learned from Rachael Wonderlin. If you have a few min, check out her site. Dementiabyday.com
She offers very realistic and practical ways of handling daily situations that are arise when caring for a loved one with dementia. I refer to her site a lot. I am a caregiver for families living w/ dementia and my father in law had dementia as well. He was a very stubborn man and we did a lot of things behind the scenes that made him feel like he was still in control.
4) Call 911 when she is having a really bad day and ask for an evaluation at the hospital. I think you can request a 72 hour non-voluntary hold for psychiatric evaluation. Sounds dramatic but I think you are having a serious crisis.
Hope this helps!
Hard as it was, and I sobbed when I did it, I did call 911 when she hurt me. Not horribly bad, but I knew it would get worse. She needed help and the dr just seemed to stop caring about her.
My goal was to get EMS to take her to the hospital at 3am. I did not go with her. I wanted them to see her in all her glory. She screamed, bit, punched And carried on till they had to provide 24/7 care to try to keep her calm. She still acted up, largely because I wasn’t there. That was my intent. Knowing they would have to discharge her to a memory care facility hopefully to get the magic concoction of medication to be able to bring her home. She got much, much worse.
I’m leaving a lot out, but to make a long story short, the insurance company said they weren’t going to pay any more. The facility called me and said to pick her up. Ackkk! She was all but catatonic.
technically, they have to do an “orderly discharge “ which they violated. They were supposed to place her somewhere else. Tearfully, I called Hospice and told them what was happening. An angel answered the phone.
ultimately, I brought her home on hospice with all the necessary medications. It was amazing how peaceful she was. We still had visitors, went for walks, etc, and eventually she was bedridden. But she was not angry or hateful.
ultimately, after a few months, she passed away in my arms.
-Call 911
-Don’t go to the hospital with her
-Call the head nurse to check on her.
-Visit the following morning.
-Tell Dr her condition has deteriorated and you fear for her safety and yours. (No need to mention the dog. )
-Ask to speak to a social worker.
-You are not at all responsible for her bills.
-Pay utilities, mortgage/rent and food out of her money.
Are you willing/able to care for her if she’s calm and not abusive?
if not, make sure you adamantly tell the social worker.
Prepare yourself for moving out on your own. Medicaid will eventually take the house, it’s not your fault and you don’t owe anyone a damn thing. YOUR sanity is what is important here.
If the Dr is willing to order hospice or a home health aide, and you are willing to do it, you will at least have some help giving you time to decompress. That worked out well for me.
I pray for you as well as your mother. I hope you will find peace.
Know that you’ve done all that you could for as long as you could and be happy with yourself. You’ve done more than anyone else did, so don’t take any crap.
I truly feel for you. God Bless!
And then she started to decline. All the early symptoms were there, but we didn't realize what they ment. The withdrawing from everyone, refusal to leave the house, etc. she couldn't (wouldn't) even do shopping, I was doing it and everything else for her and since i was divorced, eventually I just moved in to stop wasting so much gas going to her place every 2nd day. Suddenly over the last 2 months everything fell apart at a horrifying rate. She couldn't walk the stairs without help, just went downstairs to sit in her recliner infront of the tube or reading, i took care of her dog and all the cooking and cleaning and shopping, paid the bills, did all the things she was now unable to do. At least she was very grateful, until her lightning fast decline decline into dementia.
Suddenly one day, she fell off the bed and was completely unable to get herself back up. Nor could I get her up alone, as she weighs a little over 200lbs. She was instant dead-weight. So she was hospitalized for a couple of days where they found pneumonia that had been undiagnosed or treated for almost a year. Shortly after the treatment started she signed herself out against medical advice, mistrusting the hospital and doctors (yet another sign no one noticed) and this repeated twice more before we finally got a hospital bed installed in the house along with a sling to pick her up and put her down on the commode, or her wheelchair. She tore the first sling thrashing around on the bed as it was too small, and refused to let the occupational therapist install a new one calling him dishonest, a liar and a criminal. Same to the woman who was going to give her twice weekly sponge baths. So now i have to put up with her screaming she has to go to the bathroom, set her and the bucket up over the side of the bed so she dosen't pee all over it, and at least half the time it's a false alarm. So it's reverse the process, haul her back up on the mattress and put back on her depends and PJ bottoms. We repeat this every half hour to an hour. ALL NIGHT LONG. I haven't had any sleep longer then a 2-hr stretch since the end of September. And I am losing my mind. She won't eat, so she dosen't poo much, but when it comes it's gigantic, literally over 2lbs. Thankfully I was able to get pet piddle pads under her so cleanup wasn't QUITE so horrible as it could have been.
Half the time she recognizes me as her son, the other half i was her brother or her husband. and EVERY time, i had 'kidnapped her' and why did i do this to her? why cant we go back home? and 25% incandescent rage and how much she hates me more then she's ever hated anyone. Followed by an attempt to get up that will have her collapsed on the floor once more.
I don't think I can do this any more. I'm losing it and if i don't get some sleep soon i am going to crack completely.
She is never going to appreciate you if she hasn't to date. Don't take it personally.
Contact the Area Agency on Aging to determine what services they have available. If you are in Kentucky:
Kentucky Area Agencies on Aging: http://chfs.ky.gov/dail/default.htm
State Senior Services Help Line: 502-564-6930
If your Moms mentation has changed remarkably, take her to the ER for evaluation. She could have a urinary tract infection that is making her more confused. Once she is in the ER, refuse to take her home. The hospital will get her placed.
If she is able to stay in the hospital 3 days, she will be eligible for rehab at a Medicare approved nursing facility. The state will confiscate her home for payment of the nursing home once she dies if Medicaid funds are used.
Your Mom could outlive you as she is not stressing about her situation.
Finally, she really does believe the dog is hers. That is her reality.