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.
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.
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!
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,
In order to see her through to the end of caretaking, you have to be all in up front, 100%.
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.
It seems to me you have painted yourself into a corner and feel trapped. I agree with some of the others that you could benefit from some professional help.
You said you haven't been on a vacation for 3 years. I want to make a suggestion. Check out several facilities, when you find one, put your mother in it for 3 weeks while you and your loved one take a vacation and then have a week to yourself, even if you work it gives you time to clean our closets etc. Do not call your mother or allow her to call you. The nurses can let you know if it is a true emergency. Remember airplanes, they tell you when the oxygen drops, put it on yourself first, then help others. My parents did this with my grandmother. You never heard such crying, and poor me you are abandoning me in your life. They did it and she survived and my parents marriage was better. I don't know aboout the COVID thing, where my ex is they are accepting new people, they have to be quarantined for two weeks, but, you do what you have to do. My aunt start out being in one of the "respite" rooms then moved to a permanent one when she realized she could not take care of herself.
((HUGS))
My 2 guides for her to remain at home were (1) money and (2) my physical state. I had figured that she could live at home for 5 years with my 25 hours/week of caregiving and Home Instead helpers the rest of the time. Ironically that's about what it came down to when she died. A 5-year framework.
More irony, I had wrenched my back a couple weeks before she died lifting her into bed. Realizing I had reached the end as far as my physical capabilities. Talk about the signs coming together.
My point is to do what is most comfortable for you. As others have said, you can only do so much physically and financially. I was "lucky" in that she died right at the point where I was bracing to make that hard decision based on finances and my physical state. I probably went longer than I should have, but I think that's just human nature. And now after the fact, there is no doubt I did everything I could.
Know that you are a great daughter, whatever decision you make.
There is respite and at home care of you decide to keep her home
Nursing homes will provide round the clock care and you can visit as much as you want. Your mom will have meals with other people and activities to stimulate her mind
At this point in your moms life you know what’s best for her and you.
Dont feel guilty. One person can’t handle all that work and sacrifice.
Talk to the social worker at the county board of social services or the social worker at your local hospital to get more accurate information on your choices.
your a great daughter but there comes a time you need help.
You can use any income she has for in home care or respite care so you can take a much needed vacation.
Contact the Board of social Services in your county and tell them what you need , it’s a start or contact the social services department at your local hospital.
Best to you
Very good suggestions by Becky T In a previous post about checking Medicare.org for ratings.
But it was a slow downhill slide the entire time. He finally got to weak to walk, still fighting to stay home alone. Wouldn’t hear of living with us or us staying with him. Now he’s in a nursing home and he’s much more stable. He’s gained weight, he walks better, he’s a lot more social. But his illnesses mean he won’t be going home again.
There are wonderful nursing homes out there. Check the rating system at Medicare.org. See an Elder Care Attorney, they can get your Mom qualified for Medicaid even if it seems she makes too much money. It’s very doable. Papa is in a 5 star facility, on Medicaid. So it can be done.
You are giving up your life AND the life of your partner. Plus, your Mom will get better care because she will get care 24 hours a day. Go for it, you will be so glad you did. Believe me, I know.
She has got to try some kind of disposable briefs. Some are made now that are decorative. Its a sanitary and health issue for all involved. Get a case of chux disposable pads to use on bed, furniture where ever.
Good luck and the best of wishes.
If there is no money to hire people, and you can no longer do this on your own, then tell her that. The house would be her asset to staying out of a nursing home and could be sold to pay for hired help (assuming she could live at your house). Explain that the funds could be used to honor her wishes.
I would also have a chat with her, if she still understands conversations, about wearing pads or briefs to avoid messes. If she is still functional mentally, there is just no reason to pee on the floor or in the bed for someone else to clean up. Are you doing to much creating even more of her inability to do things? - It's very common with kids and elderly. It seems easier and faster to deal with an issue yourself than to have the talk. For every single thing that you do today, when you see them struggling a bit, it will be one less thing they are truly able to do tomorrow - and the ability will not return. Gone forever. Lift chairs are nice, but when you stop using arms and legs to get out of a chair - the ability goes away permanently. Definitely determine what she really can do and what you do for her only because it is easier/quicker. It will lighten your load and benefit her in the long run. Pads/briefs for sure.
Her meds can be ordered online and packaged so that all pills taken at a certain time are in the same pouch. You can even buy plastic medicine zip lock bags and package the meds yourself. Use labels to mark date and time. Set a timer and the packaged pills near her as a reminder to take the meds. Easy to check date/time on unused pkgs to see if she skipped any pills. Just a suggestion that would depend on her level of mental functioning.
Through this website, I found a home health care provider in our area for my very stubborn mom, who did not believe she needed any help. I could not be that person for her anymore. I tried it long distance for a couple of years. I finally explained to my mom that I wanted to support her as her daughter, wanted to laugh with her and do things together (pre Covid!), and not have our sole relationship to be her as the patient and me as “Nurse Rachet”. She understood that, and that made it more palatable for her to start having a complete stranger come to her home 3x/week. I asked her to give it 6 weeks and we would review how it was going. She and the HHC provider developed a very good relationship, and I turned into the “case manager “, who initially introduced them and was later able to step back. The HHC provider would text or call me to keep me abreast of how things were going every week, or if she had questions or concerns.
I hope this helps. You both deserve a good life, and there are people out there who can help. All the very best to you and your mom!
Ultimately the goal is for her to have the best quality of life in the remaining time she has. And that cannot happen if she stays at home.
If she doesn't have dementia... can you talk with her about it? If she is still aware, she can understand where you're coming from. Could you maybe tour some places with her, so she sees they're not all horrible places? A decent facility won't let their residents sit in their own pee/poop as a punishment!
I too struggle with the role of loving daughter vs nurse. A year ago I made a difficult choice, placing my father, who I adore, who was living with me for fours years - into an assisted living - on the advice of social workers. He has moderate dementia and advancing prostate/bladder issues - conditions which have worsened - necessitating round the clock supervision and care. I was initially pissed when the social workers told me not to take him home from the hospital - but now realize that it saved my life! I would have morphed from 'daughter' to 'nurse' - thus wearing me out and possibly damaging the loving the relationship we share. And now with COVID - I would be a prisoner in my own home with no day care/respite, and likely little at home support. Luckily the place I choose is high quality - and no COVID!
As to affordability - a real concern. Very important to educate yourself on the various levels of adult care and what Medicare/Medicaid pays for. Assisted living and nursing homes are two different things - and who pays is different. Some assisted living facilities are quite nice (yes pricey - but some states are experimenting with alternate payment programs that help keep frail seniors out of nursing homes - which cost states 2-3x more via Medicaid.)
Please be clear that Medicare DOES NOT pay for assisted living, nor does it pay for nursing home care. And ONLY Medicaid pays for nursing home care - and for some home care services. Medicare eligibility is based on age - 65. Medicaid has financial criteria. If mom owns the house she lives in - it's important that you see a lawyer about a trust - which may help protect from Medicaid.
I can also relate to your concerns about moving an elder into a facility - in the middle of this pandemic - with the no visit policy - which makes it hard to monitor care - and to build relationships with staff. SO important for you to have a physical presence at the facility - for your own reassurance and sanity; to clarify/confirm whatever you parent may tell you is happening - or not happening; and also to help staff get to know your elder - really they are mostly kind compassionate people - but you know your elder way more than they do - offer them insight into elder's likes, dislikes, preferences, triggers - if done properly, the staff will appreciate you - and it will result in better, more individualized care. Hopefully visit restrictions will ease up soon.
Another benefit of facility care - assuming they are doing their best and you have built a good relationship - is that you should feel less alone. Having a 'team' of caregivers helps.
Aging in place IS the preferred path - but in the end - taking good care of Mom - may involve some type of facility. You will know when you've reached a tipping point.
I recall hearing someone say they'd never put their loved one in a facility - and I would have concurred. But now I've done a complete turn-around - "Why would you deprive them and yourself of the care and support?" Perhaps a testament to my Dad's facility - and my ability to let go of some things (like giving up control over how he's dressed - as long as he/clothes are clean.)
Good Luck!
Lots of information on there, including the numbers of several people who should know about services and initiatives in your area.
Forgive my curiosity - what are the two subjects you've asked your mother never to talk about?
By the way. I think it already has come to the point where you cannot ... care for her without putting your own health in danger. Your mother isn't the only one who could conceivably have a stroke, a heart attack or a broken hip, you know. Hugs to you, please come back and let us know how you're doing.
No one person can do everything without breaking, no one doubts your love for your mom, but what good are you to her when you’re exhausted and emotionally spent? I hope you’ll make changes and I wish you the best
Please understand that your mom's care will continue to get to be more and more. Make sure she wears incontinence clothing. There are some cute-looking disposable underwear for women. Make sure her clothing is easy to remove for toileting and bathing. Streamline your/her place so cleaning is easier, but keep everything that is useful, beautiful, or makes life easier. Since you have joint issues, you might consider asking the doctor for physical therapy consult so you can learn new methods of assisting your mom without hurting yourself. Physical therapists can also recommend different devices to help you as well and teach you how to use them.
P.S. I have OA in both knees and hands. Meds are working for the knees. I had hand surgery on both hands - one at a time - which I highly recommend.
Don't you just want to be her daughter again? There are reputable facilities where she can go. They have appropriate equipment to handle her needs. As far as funds go, contact an elder lawyer and set up a Millers Trust. You will have to manage it. It allows for her money to go towards the nursing home and Medicare pays the difference. The lawyer can explain it to you.
I felt so alone when I was making all of these big decisions for my mother. I am certainly not downplaying the mental exhaustion all of this brings about. I'm just saying that the sooner you do something, the happier you both will be.
Please take care of yourself. If you get sick, who will care for your family? Lastly, mom will not be here forever, you will be able to take comfort in knowing that while she was here you were her caregiver. Not everyone has such a long opportunity to say good bye...
What if you change you statement just a bit?
From *Her wishes OR my life* to *Her wishes AND my life*. They are actually quite separate things. (It's just that the lines tend to blur when becoming a caregiver).
If her wish is to age in place - she can. But It will take a small village of aides, the skill to organise, patience to deal with various staff & lots of cash. It can be done. Plenty do IF the stars align: ie the cognitive skill, flexible personality & deep bank account.
This is choice 1. Age in place (like a Queen). Your Mother lives how she wishes (in command of her village of helpers) & you are her loving daughter who does daughter things.
Is that a realistic option?
If no. Please go back & read the first posts coz they have met these choices before.
Choice 2. Age in a new place (find the best fit facility). Mother moves to where a village of helpers aleady exists. This is what in our modern ways is called Assisted Living or Nursing Home.
Choice 3. Age in place (the right to rot). This is where someone digs their heels in so hard & WILL stay home despite all danger or squalor & family just cannot change it (without having to go full legal guardianship pathway).
There are more choices out there too. Not just her or you but life for BOTH you.