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My total monthly income is my Social Security Check...I had to declare bankruptcy due to no medical insurance and had to pay out of pocket for all my meds, and doctor's visits, and tests for over 7 years. I had to cash in all my 401K's, and all my employment retirement money early because if you don't have any insurance, you have to pay cash upfront. Lost the house paying off the medical bills, cannot drive anymore and don't own a car.
I actually have gotten my FICA scores up to 750 marks, but I have very little left over every month to do anything, but watch TV.
So you real caregivers...how do you feel now????
I would love to hear your answers......!
Were you ever declared disabled by SS? Even if you haven't, there might be help available. It never hurts to check and ask.
Since you no longer have any assets and your income is likely within the guidelines, check out:
https://www.payingforseniorcare.com/florida/medicaid-waivers/smmc-ltc#Eligibility-Guidelines
Some of the links within that page may help you find assistance in applying for this help.
If you have already tried the Medicaid route, perhaps SSI?
https://www.ssa.gov/ssi/
"Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes):
* It is designed to help aged, blind, and disabled people, who have little or no income; and
* it provides cash to meet basic needs for food, clothing, and shelter."
Raising your credit score isn't going to help you much. That helps getting loans and/or credit cards and/or better rates on loans. You are a disabled senior - do you really need CCs or loans? You need help. Hopefully you can find some. In some cases, there are VA programs as well, if you were in the military service,
Sorry your family is of no help. We DO experience this a lot ourselves. Siblings and other relatives who don't get it, who don't visit, who criticize whatever someone else is doing for the LOs, who take all the LOs money, who abuse the LO. My brothers, esp the older one, helped a little with the condo, but refused to go back and visit with our mother because he "didn't know what to do with her." How about just sit there for 15-30 minutes and listen to her repeat herself and gush over you! She was overjoyed to see him that first time he visited after her move to MC and he couldn't handle going back. Do you think it was any different for me? Sure it was. My greeting was always "What are you doing here?" and/or "Where'd you come from?" But I visited every week until lock down. Didn't matter that she repeated herself, over and over. I would listen, try to change the topic, eat meals with her, bring supplies and gifts, etc. YB was just too busy with head up his butt to bother visiting.
However we also hear about those friends and family who share caring in some way, who give respite, who find ways to ensure the LO gets the help and care they need.
Since you have no family really helping you out, you need to find a way to help yourself. No one from SS or the govt is likely to come knocking at your door and ask if you need help. You are going to need to reach out. If you haven't tried or can't try any of the above (Medicaid, SSI, VA), someone at one of these agencies might be able to point you to other services that can help you.
I've not been in your shoes, but can still sympathize. My mother needed care (dementia) and I couldn't physically provide the care she needed. I did the best things I could to ensure she was safe and cared for. I started hiring aides, to get her used to having them around (she didn't need help physically yet, so only 1 hr/day to check on her/meds.) That didn't last 2 months. Next was find MC places near me, so I could visit often and respond to needs/emergencies. On occasion there are others who can listen, relate and understand, but mostly I just had to manage everything for her. My brothers were no real help, not even for moral support or sympathy.
"I have a friend that says she'll listen to me and I can vent to her, but she always end up making it about herself."
There ARE plenty of those friends (and family too) that say one thing but don't follow through. Either she's just too self-centered or maybe tired of hearing it (I learned the hard way not to harp too much to people as they tend to drift away.)
"I've also learned that since my husband got disabled with Parkinson's that those friends I used to have are no longer around. It's ok, that's life."
Yup, when the going gets tough, those who can't handle it ride off into the sunset without you.
"I just know who I can and can't depend on."
This is important. You DO need an outlet sometimes.
"I am feeling better..."
I read you managed to get to church and to have a good talk with your husband. BOTH of those are going to be helpful, esp when your stress levels are up. Can you leave him home alone while you go to church or does he go with you? Either way, try to make this a good habit, hopefully weekly. Just getting out of the house is going to be a relief, even if it's only for a short while.
Try to make the chats happen often too. Being cooped up because of this virus will test anyone's mettle! While you were both probably mostly home-bound before, it is likely much worse over the past year. Shoot for those times when you're more relaxed and he's had all his needs met. Maybe a nice cup of tea and a chat about the "good old days." I'm sure he's going batty being shut in all the time too, along with his medical issues on top of that. Hopefully soon we can start venturing out again. If he can't get out much, but is safe at home alone, try to get some more ME time for yourself. Church. A good 1/2 hour brisk walk. Sitting out in the sun, soaking in the warmth and hearing the birds who will be returning soon. Marvel at how nature brings everything back to life in the spring. The little things.
Is there anything you can do for him to cheer him up, above and beyond the care needs? A nice card with a love letter in it? A treat he hasn't had in a long time? Any simple tasks or games that he can manage?
"Aids are not an option for me, because I can't afford them."
If he can be left home for short periods, probably no need if you can get out at all, doing something for yourself. Full time care is VERY expensive, but you're currently able to do a lot of his care. If he needs a companion while you are out, can you afford even 4 hours/week, maybe 2 hours twice a week? Every little bit helps, but 2-4 hours/week wouldn't be too expensive, for just an aide. Every other week? Once/month? Just so you have some time to care for YOU. Average cost in your state is $20.50/hr, so $40 for 2 hours. $40 for your sanity? Probably less than the cost of therapy! Assumption is your income is too high for Medicaid. If you haven't explored it, do check it out. They DO offer limited hours of in-home care.
https://www.payingforseniorcare.com/north-carolina/medicaid-waivers/community-alternatives-program-for-disabled-adults#Eligibility-Guidelines
Go to 'Medicaid Income Guidelines' - follow the link there. Can't hurt to check, maybe get a free consult.
You need some help with your wife's caregiving. If you and her have family talk to them and see who's willing to help out with her to ease some of your burden.
No matter how much you love someone, it is a tremendous burden to be their caregiver. Especially when they've got dementia. No one can be the sole caregiver for a sick person with dementia and keep that going indefinitely because it will harm you. What happens to your wife if you get sick or God forbid, died? She goes to a nursing home. Well this happens more often than not when one person has all the caregiving responsibility on them.
My cousin married a man 18 years older than her. They were together for years. He got dementia and she became his caregiver. She didn't ask for help because she believed it was her sole responsibility to take care of him. This went on for a few years. I'd see her once in a while and each time she's look more tired and drawn. I tried talking her into some homecare to help, but she refused and always said it's fine.
It wasn't fine though. She died suddenly of a heart attack when she was 59 years old. That was five years ago. Her husband went into a nursing home and he's still there.
Please stop trying to go it alone as your wife's caregiver. You need help and that's nothing to be ashamed of.
Covid was sort of a blessing for me and I don’t feel as angry because I cant/don’t see her that often. I also became resentful because I also would think of my childhood. This forum has been wonderful for me. No one knows what this is like until they do it. If there is any way you can place her somewhere, do it. It’s so much better. I have vowed not to do this to my children. Sending warm thoughts your way.
I pray you can find some time out or time at home for yourself, a friend to talk to, something funny to read or watch.
We all understand.
In addition to this, I also work full time as a manager. So I'm usually working at least 40+ hours a week or more while still caring for him. My family barely helps. Instead they tell me that since I'm the one that's here, then I can be the one to handle things.
Then they and my grandfather have the nerve to get mad at me when I want go out on one of my days off and just hang with my boyfriend or friends. They tell me that I need to be here in case something happens to him. It doesn't matter that I barely go anywhere but work and the house. I have to be there because he needs the help.
So yeah, I hate being a caregiver. Because I'm tired of always having to put others first and myself second. I'm not allowed to have my own life anymore. If I try to tell anyone how I feel, then I'm in the wrong. It feels like my family thinks that my sole purpose to take care of my grandfather while they all get to keep living their own lives.
by the way, what I did to get a day off was to say I was working and my job knowing the situation and how I was treated had my back and would confirm I was working if anything. I would go to my friends or go to the next town and watch a movie, eat go shopping, get a massage and do the things that i love. There was a time where I put my vacation in and took a week off.
I am still healing from that nightmare and think to myself how can my family be so cruel and hateful
What a nice surprise to find I have the heart of an Advocate. So I do that now instead.
I love Downton Abbey... Some feel useful & are happy in a Cook or Driver role, but not a Ladies Maid or Valet. Some may find they are better suited to be Housekeeper-Managers. Or maybe even a relation that does social visits from time to time but no hands-on at all. Friendly social support is caring too. Anyone for a scone with jam & cream?
I'm lucky at the moment that my father can still do things for himself up to a point. Like shower and toilet himself and get cup a soup ready at lunch. I cook dinner for my husband, Dad and myself as I won't let him touch the stove or oven as he leaves hotplates on.
I suspect however, that he is becoming bowel/urine incontinent as I've found evidence of faeces and urine on the toilet floor.( sorry for too much info) I say nothing and just clean it.
Im sure I'm in for more difficult times ahead. But one thing I'm not going to do is inform my siblings of his progress as they've shown their true colors. Especially my sister.
Please look into bringing in some homecare help. It will be the best thing for both your husband and you.
My brother and SIL approached my dad and mum when she was alive, and suggested that they move into a retirement situation where they would be safer. No luck Anyway after my mum passed 2 and a half years ago, Dad went downhill pretty quickly and lost many of his driving skills and the ability to handle his finances. So my brother became his POA. and it was clear that he would be better with someone to look after him. So here we are. We have considered getting some care in when he becomes worse.
There being 'no money for a home' isn't the reason why you are caregiver to and allow what sounds like a dangerous psychotic to be in your home.
Put your mother in a nursing home. If she has no money and is poor, the facility will do her application for Medicaid and it will pay for her care.
If she has income, the nursing home will take it.
If she has assets (real estate, cars, bank accounts, stocks, etc...) they will have to be liquidated. The money raised from the sale of these things will also go to the nursing home.
After it's all been spent down, Medicaid will start paying for your mother's facility care.
You don't have to be her caregiver because your brother dumped the responsibility of it on you. You don't have to keep a violent psychotic in your house to protect your brother's share of a possible inheritance either.
Put her in a nursing home. Let them take whatever money and assets she has. If your brother has a problem with this, then he can make a different care arrangement for her. One that does not involve you or your home.
In the meantime, the hospital will admit her for psychiatric dementia symptoms if she's dropped off in an ER and you tell them that you cannot and will not provide her with caregiving or a place to stay.
They will indeed admit her and will keep her in the hospital until they find a suitable care facility for her.
Also he asked if I treated my husband this way, and turned the whole thing around on me like he always does. He can't stand to be critised or be in the wrong. So he's not as senile as he makes out. He just bungs on dizzy spells when he's called on his bs.
-EXCEPTION: Mom was her sweet, kind self. We got along wonderfully.
- I was away from my quiet mountain home, which I loved and was in another state.
- Mom's town was the town I grew up in and I never liked it.
- Her neighborhood was a crowded bad neighborhood, tight with old, decrepit houses with a brick road that reverberated the vibration and noise. The noise at all hours (plus Mom's nocturnal activities) left me severally sleep deprived.
- Her house was old (my sister then me kept the place up to look sharp), which took an additional toll on me to keep it that way. I could hear the neighbors screaming at their kids through the single-pane glass.
- When I arrived for the long-term care to spell my sisters from caring for Mom, they pretty much abandoned me. If they did take Mom to their home so I could finally a day off, they'd bring her back well before the hoped-for time off because of her demanding to return and drop her off and leave.
- The cruelty of my sisters took a very serious toll that I still haven't been able to put aside these past three years though I cut off all contact. So caring for my Mom eventually caused me to lose my entire family. (Except for Mom's passing, I'm good with that.)
- The financial strain was enormous because of paying my home's bills (which was broken into while it was empty) and the new bills I had while at Mom's house.
When I arrived home after Mom had passed and we sold her home, I was in such bad shape I could only trudge. It took two weeks before I could walk my two dogs further than a quarter mile--and even then that "further" was only an extra hundred feet. PTSD sent me to the doc.
But, I was fortunate that Mom and I got along very well. While I'm not sure she ever remembered me, that didn't bother me because I knew it was the dementia. She maintained her basic nice personality. I am very grateful we were kind to each other.
I can't think of anyone who is having, or has had an easy time caring for a loved one. I hope we can both continue to be brave in this journey. I wish you the very best.