I came home to look in on my mom in 2014 thinking she was dying. She lost 80 lbs after my dad died in 2013 and she couldn't take care of the house or her finances and needed help with 2 or 3 of her ADLs. I shuttle her to and from doctors appointments, stay with her through falls and recovery, stroke, and now... she is becoming increasingly incontinent (refuses briefs or padding), serving her meds (she forgets them and I can't deal with her having a more serious stroke and being in a vegetative state or having to get her through months of physical therapy appointments), needs help toileting, transferring/showering/haircuts, and soon will need me to serve her meals because her knees and shoulders are shot.
She is terrified of nursing homes, and I can understand why. They don't staff well at night, so if you need something, like to get up and go to the bathroom (which is always needed like, RIGHT NOW), you might "sit in it" - especially if you complain... the night crew will ignore you until right before the morning staff comes in.
So, she wants to age in place until her dying day. I would turn back the clock for her, and I want to give her her wish. But with this next level of care requirement, I am finding the restriction of it to be more disturbing to my life balance than I think I can deal with. I am 50 years old and haven't gone on vacation in 3 years. I am finding it hard to sleep, concentrate, relax at all. I am grateful to GOD that I have a good man here as a shoulder to cry on and helping me take care of the house while I work and take care of my mom, but this... this is nursing level care and I am afraid I won't be able to keep my job like this and help her too. If I can't, and I give in to serve her every need until she dies... what will happen to me when she does? I can't start a career and get a mortgage much later in life. And rent where I live is ridiculous.
I feel selfish and angry. Whatever blessings God has in store for me for honoring my mother I am certain are shot because my head isn't in it. Her choices are forcing me to watch my mom die, slowly, right in front of me. They are stripping me of having my own home, enjoying privacy with my love, and any kind of travel is out of the question (moot point at the moment because of COVID) because she cannot be left without assistance. I keep cycling through selling her home and getting my own place, putting her in a NH but I feel like I will be letting her down, and letting myself down because I couldn't make it the long haul. I believe, love is taking care of family when they need us - and she has never needed me more than now. But, I really didn't come home to be a nurse. I had no idea it was going to be YEARS that this would go on. When I read that back, even I can see the battle between heart and mind.
It's easy for all of us to just say to someone in my position, "Put her in AL or in a NH! Go live your life!" But, when you, and they, will suffer with whichever you choose... how do you deal with that? I want to solve this problem and end the suffering (hers and mine) but have no idea how to do that. I honestly don't even know how she could afford nursing care. I think she makes too much money to qualify for Medicare to cover it and not enough to cover it with her own finances, which would exchange my labor burden with a financial burden that I don't make enough to carry.
I did tell her that if it comes to the point that I cannot safely care for her without putting my own health in danger (I have 2 titanium hips and bad OA) then I will have no choice but to get her help. I suppose that is happening now a little bit (I have skated once or twice when I walk in and she has had an accident, doesn't tell me, and I step in it). She assumes that means we will bring caregivers in for her. And that would be possible to some degree, but we cannot right now because of COVID.
I'm probably just venting but would love to hear your thoughts on the matter. Peace.
Your local Office on Aging can help you through the process but a few things to note. Medicare does not pay for custodial care in nursing homes; it is a health insurance only. The big payer for custodial care is Medicaid but it is administered by the state so rules, regulations and requirements differ from state to state. Most states require that the individual in question only have a min of 2000-4000k in assets particularly if there is no community spouse. All assets fo towards the support of their owner so - if she has a house it will need to be sold and funds from the hosue will go towards payment of her bills at the facility in which she is placed. Medicaid in NJ takes a five yeaar look over the shoulder to make sure that there have been no "gifts" or "loans" to friends and family to make the person elegible for Medicaid. If thre have been, a time penalty will be imposed. Facilities do not ahve to accept anyone who does not have a valid and verified payment source. Many facilities require a private payment of serveral months before they will admit a new resident because they realize that when the person is eligible for Medicaid they are going to be paid significantly less than private. Sounds like you Mom will need the level of care that is provided at a nursing home (Assisted livings only provide assistance with activities of daily living); this is actually a good thing because ALs have a really limited number of Medicaid beds.
Call the Office on Aging but start shopping to find some facilities now. Remember to visit them at least two times (one unannounced). Check the activity schedules and observe how the staff and residents interact. Nursing homes fix food for a wide variety of medical diets. Do not expect the food to be like those you would find in an AL. And you are right, both AL and NH are terrifically understaffed at night (even more so in the pandemic) - you will wait and if the resident is a mandated 2 person assist.....you may wait even longer. Find out who will admit once your Mom has qualified for Medicaid and who wants private pay first (but who will guarantee a Medicaid bed once the application is accepted). When you find one or two you like, let Mom take a little vacation there for a few nights.
Oh yes for the Medicaid application start getting the documentation ready tomorrow. You will need birth certificates, marriage license, death certificates, divorce decrees, mortgage statements, utility bills, and bank statements (in NJ we need 5 years, ask Mom's bank to supply them) and document all medical and home repair expenses. If you haven't done so already get Mom to do a Durable Power of Attorney, a Living Will and a Medical Proxy.
Don't allow yourself to get overwhelm. It's not a pleasant time of life but it happens to all of us and your get through it. Best of luck to you, keep us updated and if I can be of any assistance just message me.
In order to see her through to the end of caretaking, you have to be all in up front, 100%.
These are essential questions that need to be answered.
I took care of my mother with total POA authority shared with my younger sister but she chose not to participate. I made some good & some bad decisions for the 12 years I did this.
It's not easy & unlike me, you have come to the conclusion your own life has value. Some of the burden of her care must be shared, However, I highly suggest if you hire help to come in have security cameras all over the house. Sorry but no everyone does what they should in caring for someone. This way you will know. I also suggest the cameras be hidden if at all possible & be installed in such a way no one can tamper with them without you knowing,
I also wanted to share that my mother has better care in her facility than she would at home. She has regular doctor visits, activities, safe bathing and dressing, regular meals, extra nursing visits, and she is not left to sit all night in her diaper. She has dementia,
delusions and hallucinations and I could never manage her care at home. Visit facilities in your area to see what is offered.
You have the type of relationship with your mother that is loving and giving both ways. I don’t have that with my mother. So it was a little easier for me to take the emotion out of the situation. But still I made practical decisions based on her safety and care first. You need to consider your own health. If something happens to you, what will happen to her? I had a friend that went every night after work to see, bathe (she was a nurse so the staff allowed her) and feed her mother in the assisted living. Then she was able to go home and get a good nights sleep and go to her job the next day.
What you are doing is not easy. I commend you for prioritizing your mother’s wishes. But I do hear some very valid concerns coming through in your question to the forum. And you need to start to pre-plan now before there is a crisis. I hope you find some balance in your life!
I was in your shoes for 20 years, caring for my mom and dad. Fifteen of those years I had mom living in my home.
It is an enormous sacrifice and only you can say if it is worth it. I can tell you that in my experience it wasn’t worth it and was too large of a sacrifice.
I sincerely wish all the best for you and your mom and support you no matter what you decide but strongly suggest the importance of taking breaks as often as you can. Look into Council on Aging for a few hours of relief. I did that and was satisfied with their service.
Otherwise if you continue to keep on being her full time caregiver it is a recipe for burning out and missing out on your own life.
Take care.