I am purely venting here because I have to. I have been taking care of my mom now for about 5 yrs. She will be 88 yrs. old in July and has many mental issues along with Dementia. Since my husband passed away I have to do this alone. I have no help with her and I work full time. She does attend an adult daycare during the day while I’m at work. They used to be open on Saturdays and now have stopped Saturday care. That leaves me with 4 hrs. on Friday to get everything done that takes travel because I can’t take her with me.  So, during the week we are home every night and on the weekends… well, we are stuck in the house.

I can’t take her out to eat because I never know what she’s going to do. She doesn’t chew her food so everything has to be mechanically altered as they say… in other words, mush! She has panic attacks every so often and the one time while we were in the care on the way home from work she decided she was going to undo her seatbelt and open the door while we were moving. That was something new, she’d never done anything like that before and I had her in the front seat of the vehicle so I couldn’t stop her from unlocking the door. She did it twice before we got home. So, now I have to look at her state of mind before choosing front or back seat. I’ve said this many times — I feel like a prisoner in my own home.

Now Memorial Day weekend is upon us and you know what? Everyone in my office is looking forward to the LONG weekend. Me, I’m petrified! To think about being trapped in the house for three looooonnnng days with no where to go and nothing to do… you can imagine how I feel if any of you have a situation like mine. I just wish I could fall asleep on Friday night and wake up on Tuesday morning… that is the honest to God truth. We can’t afford a nursing home, but that’s what she needs. Medicaid denied her, which I’ve heard they always do the first go round. DHHS is so awful, they asked for things they already had and made it extremely difficult to get everything I needed to help her qualify. So, now I have to go through the entire process again while still working full time and taking care of mom.

Anyway, that’s the story… I hope someone reading this maybe won’t feel like they have it so bad. There is always someone who has it worse. Although, I can’t imagine this situation being any worse because mentally I’m wearing very thin… eventually my physical health will pay if things don’t lighten up here.

Thank you for letting me share.

DF, North Carolina

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15 Comments

  1. Wow, I thought I was reading my story! My mom has schizophrenia and dementia. I’m her sole caregiver. She has tried to jump out of moving cars too. I’ve been taking her to a geriatric psychiatrist for over a year and we FINALLY are getting somewhere!! For the past month we have had some peace. Getting there has been hell. Her Doctor didn’t want to give her antipsychotics, so I insisted on a referral to the geriatric psychiatrist. He played around with different meds and was just about to give up! I know things will change again. These diseases are never stationary but for right now, at this moment in time, I can breathe! I hope you find some peace. I hope you get the help you need. The Alzheimer’s Assc has cards you can hand out that explains to others that your mother has a disease that causes her strange behavior. That little card has saved me more than once!! Like the time we had a flat tire and when road side assistance got there my mother started yelling for the guy to call 911 because I wouldn’t take her to church! I just handed him the card. He still got out of there as fast as he could. All I could do was laugh watching him race thru the job. You gotta get your laughs whenever you can!

    Reply
  2. I, too, feel your pain and regret moving in with my mother. I bought a condo that would suit her with everything she needs on the first floor and I spend hours at a time upstairs. Sometimes, I don’t even want to be in the same house with her, even with the separate spaces. My mother can’t afford a nice nursing home, so if she ever goes into one, it ain’t gonna be pretty. I guess I want to save her from that, but honestly, the ingratitude and know-it-all attitude and expectation that I do everything has run its course. I’m increasingly doing less though and have an aide that comes a couple of times a week to do light chores.

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  3. Dorothy, I am so sorry to hear about your plight. I will be keeping you, along with all the other caregivers, in my thoughts and prayers. There is a special place in heaven for all of you <3

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  4. When people tell me they worry about me, out don’t know how I do it, I always tell them there are a lot of people that have it way harder than i do. Dorothy, I don’t know where you live, but through hospice, I have learned that there are a lot of places that will help us.In order for most of them to help, you need to be denied by DHS. We have a social worker from hospice, so she guides us to where we can get help. But, she did tell me that every county has a council on aging, and they are tremendous in helping you get the assistance you need.
    BTW, I also, am so glad I came across this sight. It has helped to read other stories and know I’m not alone in the feelings I have in caring for my husband.

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  5. Dorothy, you are right about people who have never been caregivers. I get advice from friends….’You’re mom will be ok if you leave her alone for a bit…you need some time for yourself!’ My mom has a blood clot from her groin to her knee. She’s 82, unstable on her feet, and is on Xeralto (a blood thinner). If she falls and hits her head, it could be fatal. It’s not a chance I’m willing to take.
    I’m so sorry about the loss of your husband. My dad passed away a few days before Christmas, so I can relate to not being able to grieve. Mom has been with me 24/7 since, and it has been an adjustment. I’ve put my brother on notice…his house is on the same farm as my mother’s…that I will be traveling to see my children this summer, so he needs to make arrangements for someone to care for mom. I can keep her the other 9 or 10 months out of the year, but I do need this respite to recharge.

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  6. Denying her Medicaid is bullshit. Read my stories. Raise hell. They denied my mother’s Medicaid on their mistake. I contested very loudly, locally, state wide, and nationally. They approved it. You need help, now. A nursing home is a better place for her than your home. Better for both of you. You have to make some hard choices, but your health and well being is just as important as hers. I wish you lots of strength to handle this.

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  7. I’ve just discovered this forum, and I can already tell it’s going to be a tremendous help in caring for my own mom. You have every right to feel the way that you do. It’s not the life or the future we imagined for ourselves. It’s a death of sorts. Are there young girls in your neighborhood who might come and sit with your mother for a few hours so that you’re able to get out and do things for yourself? I’ve found my Mom enjoys Paint by Numbers, and I’ve ordered her some adult stress-relief coloring books from Amazon as well. Perhaps this would keep your Mom occupied while a sitter was there, allowing you some time away.

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    • Thank you so much for your input. Just knowing there are people out there that care enough to comment is a comfort. I’ve NEVER ever felt more alone than I do in the part of my life. I lost my husband 9 mos. ago and I haven’t really had a chance to grieve losing him because my mother has to be number 1 right now. But I think discovering this website is one of the best things that could have happened because I know I am speaking to people who are dealing with the same burdens. Maybe different situations but, the stress is the same, the loneliness, anger and frustration are all feelings we all share and not for just a day or maybe a couple of hours but 24/7. A person who has never been a caregiver CAN NOT understand the magnitude of this tremendous responsibility~

      Reply
  8. Hang in their Dorothy! Never mind who has it worse, your life isn’t easy at all right now! I know you need and deserve respite and hopefully someone in the community offers it… There are good people in many communities that offer to volunteer to give caregivers time from their loved ones… Even if you get a couple of days… Have a look into it! That said, I am glad you are incredibly unselfish and wonderful because you are the epitome of what humans should be! Selfless, caring and generous! I am humbled by you! I am a caregiver for my 28 year old daughter who has had a stroke. I find she is very demanding, needy and I am constantly at her beck and call, but you have made me rethink my situation, I shouldn’t complain!

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  9. I’m sole caregiver for quadriplegic husband….open windows….walk outside,breathe in the fresh air…….find a few good old movies, maybe she’ll relate for a few minutes….maybe google Louise Hay to listen to a meditation to help U through the day!!…..I feel your pain + I’ve found if I change my attitude,( which isn’t easy)….my days go by much easier….I HONOR YOU for ALL U do!!…..contact a social worker in your area….they’ll HELP U out….FREE

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  10. Dorothy, I know how you feel, you have it really really bad and I’m sorry. Does your mom own her house? Does she get a pension, social security? Does she have any savings? Are you authorized to write checks on her behalf? Why is she denied Medicaid? The whole thing revolves around her assets, she has to spend down to, what, $10,000 before she is eligible for Medicaid. A nightmare to apply for and wait wait wait to be approved. Then getting her into a nursing home, they will take her pension and social security (except for a few dollars a month?). But if she owns her house, they will take that. You should consult with a social worker and/or an elder care lawyer to see what can be done to move the Medicaid process along. If she owns her home, it might be best if you just give it up, let them take it. It’s not worth your health, you have been doing this for so long.

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  11. I hear you, I was caregiver for our 45 yr old son with scizoaffective disorder and psychosis. His disease put us through hell as he refused treatment and behavioral health is voluntary only , so he was put out homeless , without medical care every time since he was unable to acknowledge he.needed to ask for . Believe me , the system now in place is heartless and , wherever he is now he will die with his rights on either by being killed by the cops or the victim of foul play or ending up in the jails or prison system. Heartbreaking , plus it just about destroyed our family as we were victims of his delusions.
    Now I’m caregiver for my dear husband of 54 yrs , dealing with vascular dementia, now having a really painful and confusing time from a rotator cuff surgery. It’s tough on caregivers when having a little to survive puts you on the too much income spectrum. What little assistance there is now as the powers that be cuts funding for those most in need and so vulnerable, yet those so financially endowed aren’t even asked to lighten the burden anymore. So here we are prisoners in our homes , so to speak. Oh do I know . I can’t drive due to poor vision and my sweetheart was my only driving miss daisy. …..
    My one suggestion , cause all states and counties are differnt , but some have very good senior service centers. (Ours has been heartlessly cut by our billionaire governor) give them a call and ask what services they could help you with. There are caregiver grants out there.
    There is also the Alzheimer’s association, that many do offer some services.
    My mother used to say, ” cheer up, things could be worse…. I cheered up, they got worse.”
    (((Hug )))

    Reply
    • Scizoep12, in addition to being sole caretaker of mom with dementia (who is now much better off in a nursing home), I have a 50 something year old severely mentally ill brother who has been that way for 30 years. He is 6′ 5″ and weighs over 300 lbs. from the meds. He IS taking his meds, horrible side effects, but he takes them. He has a meltdown once a year or so and goes into a mental hospital for 3 months, and then back to the group home (he has been living in a group home for several years, they feed him and give him his medications twice a day, otherwise he is free to do whatever). I am so very grateful for that. I hope he’s able to live there the rest of his life, because he could never come live with me. It’s paid for by his disability check (injured on the job years ago), funds from various charities, and of course I give him spending money once in a while and buy him clothes. take him shopping, out to lunch, up to see his mother…. Things could be worse, I guess, I am heartbroken by the stories here.

      Reply
  12. I feel your pain. My daughter is 32 with dementia issues from a head injury. It has been 10 years and a lifetime to go. She too does the car thing among others. It is so hard. I feel selfish when I wish for some of my life back. I had to give up working so financial burdens are hard.I tried going back to work but just could not be up all night with her and work all day. I know there are others worse off but it still doesn’t make it any easier.

    Reply

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