I went back to work in September part time because staying home with my mother who has Vascular Dementia was getting to me. Now she has gotten worse and hospice comes in to help some. She falls a lot and can’t really talk that much. My husband cares for her while I’m working. But I feel like that’s not fair to him since she is my mother.
I just don’t know what to do. Any suggestions?
What has he said to you when you tell him what you told us?
Your mother needs to go into a NH.
Most likely her mother won’t even know where she is soon , or maybe she already doesn’t know where she is .
Did you actually go through the Medicaid application process? Or are you assuming she won't qualify? If you did apply, on what grounds did she not qualify? Financially or medically, or both?
Please consider seeking an Elder Waiver through your county's social services. Or a QIT (Qualified Income Trust) to get her to qualify financially.
And also consider hiring some hourly help to give you or your husband a break.
If she doesn't qualify financially for Medicaid, great! That means she has assets and can pay for her own memory care. Sell her house if she has one, cash in her savings accounts, and get the professional care that your mother needs and deserves.
Have you consulted with a Medicaid specialist , or eldercare lawyer ?
If she has assets use that to pay for her care in skilled nursing until she runs out and then she goes on Medicaid.
You came to a Forum of strangers to ask if you should quit your job .
A job you went back to because you are burned out . You say your husband is not burned out , although you still feel bad by going to work . You also say below that you promised your parents that you would care for them no matter what .
My question to you is , if you were the ill elderly person , would you want your husband or your children ( if you have any ? ) feeling like you do now ? Would you want them burned out and simultaneously feeling so guilty that they have to come to a Forum of strangers because they do not think they have the option of placing you in care ?? Would you have someone promise to take care of you at all costs to their own , health, mental health , financials, marital impacts etc. ?
Your mother may not have wanted you feeling the way you do now either . When those promises are made the elder does not always realize how much that can impact the caregiver’s life .
I was a caregiver to both parents in their own home. That's where they wanted to die. It took them a total of 5.5 years of actively dying before both of them had finally passed. I've posted this before, but please read.
On dying at home: This is what my dad wanted to do, and he did. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.
So let's walk into his home, a beautiful South Florida villa. He'd been sick for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.
His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.
The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the room that we needed between trash pickups). Always laundry to be done.
Dad crying that he wanted to die. Hospice doctors, nurses, a minister and PTs in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.
And then again for my mother.
This is what dying at home looks like. I'm not doing that to my family.
Beverly, I wish you luck.
1. Do you NEED to work to provide income at this time.
2. Do you WANT to work or stay home.
As to the rest there really is no question. You tell us hubby and mom are fine as things are, and you are as well. Ruminating about "what is fair" and so on isn't relevant. You already TOLD us that hubby thinks this is good and is fair. So just tell him "Hon, as the point this is too much for you and you feel it is better I am at home helping more with hands on care, just let me know; that's the week I quit". And then go on as you are.
I should add to that medicare is paying for her Hospice care, which is a huge help!
In order to get Medicaid, you have to spend down your assets, such as a house, life insurance, vehicles - all have to be cashed in and used for care. Once they go under the threshold of maximum income per month, they receive a monthly stipend (SC it's $30 per month) out of their SSI, remaining pension, or whatever income they receive. She cannot make over $2900 per month and that money goes toward the Nursing Home. The only way you will avoid a nursing home, is if someone cares for you outside of institutions (such as a family member), a long-term care policy (which will get you in the door but within a few years that will be gone and you'll have to get Medicaid, OR you have millions of dollars. To pay out-of-pocket is going to cost you at least $100K per year.
Now, I feel it necessary to break the mold for my family. I DO NOT WANT (unlike my mother) my only child, a daughter just starting her family, to have to take care of me when I can't. It's NOT HER RESPONSIBILITY. I am planning on my eldercare now. If I take that money and use it on my mother, how does that help me when I get older. Just because your parents took care of you for 18 years, doesn't mean you have to devote those years back to them. It was their choice to have children and that choice dictates they take care of you while you are young. It doesn't work the other way around. Some may say that is cold. I love my mother very very much and I do not regret one bit of my childhood. We didn't have much money and our clothes were from K-Mart, but we always had lots of love. This is what I am giving back to her, keeping her in a place that can watch and care for her 24/7. I just lost my husband to cancer and I am relatively young and active. If I brought my mother home with me, it would be 24/7 care for her and absolutely no life for me. I'm not going to have her leave this world with me resenting her for taking care of her and losing 10 years of my life. Then putting my daughter through the same thing because I used my eldercare funding for mom.
My parents (mom and stepfather) never planned for their eldercare although I begged them to. I begged my step-father to help him with his finances to no avail. I finally had to force them to buy cremation policies so we (their kids) wouldn't be left with that. OMG, what a mess they had going.
In the long run, it is a personal choice, but consider very carefully what is best for EVERYONE before you decide to care for your parent at home. My husband, God rest his soul, wanted to die at home. He was 63 with pancreatic cancer. He was in Hospice for 2 weeks at home. The day I was going to call Hospice and have him transferred to a hospital for Hospice care because I just couldn't do it any more, was the day he died. My husband - would do it all over to grant his wishes of dying at home. I now do not have that luxury since my spouse, my life partner is gone. I have already settled the notion that if I make it to my elder years, I will eventually live in a nursing home if needed. I try to take care of myself to be independent as long as possible. My mom didn't do that.
Sorry this is long but love should make you do what's best for you all - not just for your mother. I pray for all that have to make this decision. Blessings to you.
I left my career to care for my mother, who was in a high-end nursing home (aka warehouse for the elderly) that was part of a continuing care retirement community where my mom and step-father (of 30+ years, after my dad died) had bought into "Life Care" for hundreds of thousands of dollars (ugh!) IMO: The care was one step above complete institutionalized neglect. The more care you needed, the less you got in proportion to your needs. My mom could not initiate communication, but she could hear and understand, yet - of course - the staff were not trained to cue her (e.g. are you comfortable?; do you want to get up?; is the TV loud enough? I stepped in to be her voice and provide some quality of life. My brothers, not so much. :-|
I have NO REGRETS. It was the most meaningful thing I have done in my life. YET, not everyone has the resources to do what I did. I was not rich, but had enough to get by, and at some point before I used up all my savings I initiated my Social Security; that and a small pension are my fixed income. I lost 5+ years of work and contributions to Soc. Sec., and have not worked full-time since my mom departed. I live frugally, but comfortably. That was my trade-off, and for me it was well worth it emotionally (I could not bear to see my mother treated and neglected as she was) and spiritually.
Consider your options. Only you can make the right choices for you.
Peace.
You said that your mother does not qualify for hospice care, and then you talked about still working three days a week. I assume this is to support your mother's health care needs.
Your income and assets have nothing to do with whether she "qualifies." It's all HER assets, income, etc. As someone else said, she must now use her home, other savings, etc, to be taken care of in a facility.
I must mention this because I saw it happen in my own family with my aunt. Long after she should have been placed for 24 hour care, my cousins were keeping her in her home. One of my cousins lived there but he wasn't around all that much. They hired a neighbor to come in and "look in on her", but she was often alone. I thought his was elder abuse but I stayed out of it. I believe that they did not want her to go into any kind of care because she would have lost her house, her considerable savings, etc. They would not have inherited anything. Somehow I understand this, but it's also unconscionable.
There’ve been a few attempts at doing this to me. One neighbor’s family didn’t care that I worked 2 full time jobs, with one being in the next state and they were offering nothing, plus, I had my own mother. I simply had to let them figure out that I wasn’t stopping in, to see their mother. Sad, I know. But, you can’t just heap responsibilities on outside people, unless they allow it.
If your husband is fine and you are happy at work (your respite) then go the distance. It sounds like she is already declining on hospice and so having her close is probably beneficial for you but again your decision and DO NOT FEEL GUILTY! Sounds like you have above and beyond:) Hang in there.
In the same boat:)
I am in a similar position. I quit my job 10 years ago at the age of 53 to stay home and care for my husband full time. A decision I do not regret. However, now, having been out of the workforce for 10 years, at age 63, I have no real job skills and fear what will happen when he dies. I might be able to get a low paying job, if I have the physical capability. Taking care of someone full time really takes a toll on the body. As hard as it is, I now must continue to do this for as long as possible, because if he goes to a nursing home or dies, I lose his SS income and my caregiver income. I will be financially as well as emotionally devastated all at once.
You have two options; with mom's money, hire in-home help or find a care facility for her. Ask hospice if they have or can refer you to any in-facility care.
Your mother should probably not be cared for in your home. It has already gotten to you, and she will only get worse. She will be well cared for in a nursing home, with or without hospice.
-think about your options,
-choose the one that will let you live the rest of your own life with NO regrets. God bless
My husband had long-term care insurance with one of the best-known and highly rated LTC (and other) insurance companies. He and his deceased wife paid into it faithfully for years. The amount of money available when he needed it was about $15,000. At $8200 a month for his memory care facility, it didn't even pay for two months of his care. Furthermore, the insurance company was very particular about what they'd pay. Certain facilities didn't qualify. Certain categories of help didn't qualify. The claims process was difficult and onerous.
He would have been better off to have put that money in a mutual fund and let it grow. Then when he needed it, the money would have been here for what he needed, not what the insurance company decided to pay. LTC insurance is a scam, IMO.
I also used PFML last year which does help so that I did not have to quit my job. I know I will miss caregiving for my mom once she is no longer here, because she is the most important part of my life now. I am an only child and I need her and she needs me, My dad dies in 2021. I know your mom appreciated you and cherished you for caring for her. I commend you.