My mother is in a very good nursing home but the aids are flat out so they only handle the bare minimum. I’ve been attending to her personal care needs including scratching, massaging, shaving, cleaning out ears/nose, dealing with her hair, flossing and brushing teeth (they’ll brush but won’t floss). I also straighten out her room, clean up tray table, manage her closet and belongings and make sure things are organized as we all know the quarters are tight . I’m also her quasi interior designer. She is basically like a quad and can do absolutely nothing for herself.
I have been going in daily at night to do these things along with feeding her dinner since her placement in March 23. My father goes in during the day and feeds her lunch but refuses to handle any personal care needs and attests that she has what she needs from the facility.
She doesn’t have what she needs fully from the facility, she needs more but I’m the only one doing it. Yes, I could stop doing it but then it won’t be done at all. In what will be a surprise to all, my only sibling brother lives 2 hours away and places calls with occasional visits and handles zero of the heavy lifting.
Father refuses to hire an aid to supplement. Basically school of hard knocks, mother just needs to adapt and deal with it if for example, her teeth aren’t flossed. I think she deserves better care. I could pay for it but it doesn’t feel right, I’ve already paid my parents with my life and I have been spending a lot on things like her clothing anyways, my father is exceptionally cheap. He does have a mani pedi person come in once per month which is helpful.
I’m feeling really demoralized, burnt out, unsupported and exhausted at this point. Maybe I am doing too much, but if a daily massage or supporting her with her personal care is the only thing that gives a profoundly disabled person some relief or peace, why wouldn’t we do that??? Why wouldn’t we help someone when they can’t help themselves? Why be stingy in this scenario?
Curious what people think about hiring a private duty aid for a SNF?
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Interestingly at a premier facility in Florida I see private duty caregivers all the time with clients.
The places that one stays at has a contract that says what they will do and how frequently they will do it. If they do these items, but don't do it adequately, then that is something to talk to the Head Nurse of the facility. However, there are a lot of things that should get done and they are done, just not up to my standards.
For instance, in my state, only a registered nurse can cut someone's nails. Therefore, most facilities do NOT cut nails of their patients. Haircuts are generally not included, but washing of the hair is included in the bathing contract. When my Mom's nails, especially her toes, got long, I took her out to get it cut and polished. Complete with soak, that was only special occasions, birthday and Christmas.
Brush her hair, help her put on her clothes, make her presentable -- I expect the facility to do that. If she had long hair and wants her hair in a french braid everyday, I don't expect the facility to do that. Time to get her hair cut into something easy to manage.
Oral care -- I expect the facility to do a minimal job. However, to do it completely with floss, I know that I have to do that. Any dentist will tell you that a facility doesn't have the time or patience to do it completely for every person.
Significant massages, I do not expect the facility to do. If she wants a massage, I bring someone in. Cleaning of her ears, etc. is something I did. Maintenance of her hearing aids, I did. Changing batteries on the hearing aid, the contract said replacement on a weekly basis. However, sometimes they didn't let the battery air long enough, therefore the battery did not last all week. If so, I would go to the Nurse's Station to get new batteries (I provided the batteries.)
As for straightening up the room, cleaning tray table, keeping things well organized, that to me is a "I need to do it" My Mom would not intentionally leave her clothes on the floor, nor would she mis-file her clothes. This almost sounds like your idea of cleanliness standards, is higher than most people. Cleaning the tray table, the facility did that. Going over the tray table with anti-bacterial spray, I did that. On the other hand, my Mom did not have a lot of things at the facility so if clothes were left out, it was usually because the person doing the laundry was interrupted and it would be taken care of at night.
So yes, you can hire a private pay person to augment care in an SNF. However, even then, you might not get it to the standard that you are expecting.
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What would happen if you took a few days off, do you think the lack of care that she was receiving would impact him, and possibly cause him to open up some funds?
I also understand not wanting to see your mother suffer.
That’s what causes us to do this.
I don’t know that it’s martyrdom. or at least conscious martyrdom, it just quickly slips into becoming a destructive force / energy suck in your own life.
You need to set some boundaries for yourself , your mother would not want you to damage your own life for her.
I know many people who have had to bring private aids into assisted-living and skilled nursing. However, the point about not allowing the skilled nursing staff to become dependent on your private Aid is a very good one.
My mother is currently in a skilled nursing rehab. They do brush her teeth
They don’t floss, but she can use her hands. So I purchased those floss on a stick devices.
I feel badly for you and your mom. My uncle lost the use of his hands when he was in his nursing home.
All of my cousins worked full time and couldn’t be with their dad as often as they would have liked to.
The nursing home did as much as they could. They did feed him but when he wanted to make a phone call to my mom he had to wait until my cousins arrived to dial mom’s phone for him.
Tell dad your new schedule and that you plan to do X, Y, Z once a week, not daily. Maybe he will notice that she is not as well taken care of and will be more willing to pay the money for an aide. I would check if they allow it but I know the AL where my mom is does allow it.
I know I often feel a twinge (or two) of guilt about not doing more to help my mom with all kinds of things. Taking her out to eat since the food there is not more than OK. Take her to the movies since she really likes doing that. And more and more things that I could be doing for her. She isn't very happy but I am very busy with my life and my grandkids and there's only so much I am willing to give up, especially after she lived with me for 7 years.
First, make sure the SNF allows this. My dad's AL does allow it, but not all AL's allow it. Also, I would suggest to make sure the Aide is not doing things that the SNF staff should be doing. If you have the aide taking over things they should be doing as part of their job, it could be a slippery slope where then the SNF staff do even less for your mother. For my dad, I have clearly delineated to the AL staff what the outside aide is supposed to do, and what the AL staff must continue to do.
"I would suggest to make sure the Aide is not doing things that the SNF staff should be doing. If you have the aide taking over things they should be doing as part of their job, it could be a slippery slope where then the SNF staff do even less for your mother. For my dad, I have clearly delineated to the AL staff what the outside aide is supposed to do, and what the AL staff must continue to do."
But, sadly, your father doesn’t agree. I’m assuming from what you said that he is well able to afford this, even allowing for the possibility of her living many years and his eventually needing care—no small assumption.
Is a compromise possible? Something like dad hiring an aide for whatever the minimum commitment would be (I’ve seen 4 hours 3 times a week mentioned as a minimum), you filling in a day or two per week, maybe getting brother to contribute something toward the cost—call it her Christmas and Mother’s Day gift. (Given your brother was raised in your father’s home I’m not the least surprised by his reluctance to pitch in with the personal care.) Do you have any other family that might be willing to help? I agree with some of the commenters that you need to allow the nursing home staff to provide all the care they will. They will feed her, bathe and change her, brush her hair and teeth. You need to let them do that. Part of the reason you’re so burned out is that you’re doing too much of their work. And yes, some of these things you may have to let go a little. If her teeth get flossed and her room is tidied every other day that should be sufficient.
I wonder how long your mother has been disabled. Your father must be very weary of it all too, and feel like he has no control (so he exerts control in the only way he can, the money!) I can only imagine how frightening it must be.
I wish you the best and hope you are able to work through this, I do understand and admire your compassion and devotion to your mother. She’s so lucky to have you.
I appreciate the positive vibes. I think we're all weary. It's so true what they say, that when an individual is sick, the whole family is sick. Thank you.
Sometimes Private Aids are hard to find. I did pay a Home Health Aid to visit my Mom when she was in rehab for cardiac care. At another time I was at her Nursing home three times a day and I needed some relief. I gave the private Aid a set of typed instructions about my mother's needs. I found it helpful, and I know my mother appreciated seeing another face and getting extra attention. I like your question "Why wouldn’t we help someone when they can’t help themselves?" The sick and dying will never be healthy again. We are the ones that get to leave after the visit. We go home. They don't. It is very sad.
I hope you get some support. I found my Moms Aids through the local Council on Aging.
Some day you will look back with no regrets. My very best to you.
For this meeting ideally you want the DON to be there as the DON will very much be the big determining factor for just how this is going to happen. DON = director of nursing and in my experience is the goddess and ruler of the NH.
fwiw your going over there to the degree you described is imho a problem for the staff at the NH as you are always there and they have to always be working around you. You basically are slowing their roll and that is so not what you want to be doing. This type of behavior usually is the husband of decades who finds himself adrift and alone in the house once his wife goes into a NH and he’s there every day at the NH….. and for hours…. and a good NH activities Director can find a way to put him to “work” helping bring his wife to meals / activities & perhaps some of the others ladies as well and he plays cards with the old roosters at the NH then he goes home early enough the nursing staff can freely do their EOD duties. But a daughter or son doing this well it looks more sad, like y’all don’t have a life. Just sayin’.
* regarding conditions, the NH will likely have a short list of companies they have already vetted to allow to come in as outside consultants or Independent contractors. There’s a big issue of liability for the facility in this so the list will be narrow. Just a thought but there might be, just might be, a hospice company that also has an ancillary division that does private pay aide services in as well. This actually could be quite lucrative for a smaller hospice group to provide this as they already know the layout of a NH and know the staff at the NH so to take on seeing a nonhospice resident at a NH maybe 3 times a week as an aide at private pay rates would be worthwhile.
But before you do this, if your dad is not 100% in agreement on doing this and dad will NOT, absolutely WILL NOT PAY for additional help for your mom and you 100% on your own cannot pay for this, forgetabtit. If at the care plan meeting dad & you cannot show a united front on wanting a higher level of personal care done and a willingness and ability to pay for it, then forgetabtit. Your mom is getting her medical care done, your issues are more in line with personal care which an CNA can provide.
Thanks for your input. It's worth exploring doing more with hospice.
My question was about hiring private pay help to get her more attention than the facility can provide.
Secondly, I was a CNA for 25 years. I have never flossed someone's teeth. Nor have I 'scratched' them (I can't even imagine what you mean) or picked a nose.
Granted, being a CNA is one of the most disgusting jobs in the world, but even we are allowed to draw the line when it comes to doing some things.
You would do well to hire a private aide to help out. If your father refuses to pay, you should talk to a lawyer and see if there is a legal way to force him to cough up for the private aide cost. You definitely should not be paying for it.
A private aide is not going to do the things you want them to though. No one is flossing teeth and no one is picking noses. They will make sure your mother is clean and her room is tidy though.
Mom should be bathed, IMO, 2x a week. Unless she is getting a sponge bath in between. Her hair, what do you expect? They don't style it. Just gets brushed and combed. I actually carried a brush and sample bottle of hair spray in my purse to do Moms hair. Just some hair spray on the brush and brush it thru. Helps with the static. Then I would brush it the way she wore it and spray again. Your lucky if the teeth get brushed. One bad thing about facilities, dental health. And the staff should be feeding her.
My DD is an RN in nursing homes. I worried about Moms outfits matching. So I hung tops and pants together. Later he bra too because sometimes she did not have it on. She needed it because she would get a yeast infection if allowed skin touching skin under her boobs. My DD said "you can't worry about those things" But Mom had dementia and I felt at least her clothes could match and her hair look decent.
I hope our OP speaks with admins about her expectations. She will likely get told some of the realities of care. It is no longer about saving the teeth for a decade more of wear. It is about the impending loss of our loved one. And it's such hard stuff.
Count me in as a micromanager. I will try to micromanage issues that haven't even come UP yet, just "in case". And that after 81 years of life that has surely taught me it is to no avail. Alas. No answers out there ultimately. We just have to struggle on.
"In what will be a surprise to all, my only sibling brother lives 2 hours away and places calls with occasional visits and handles zero of the heavy lifting."
hahah (respectfully)... this is NO surprise to many many participants on this forum. Just like you, your brother is not at all obligated to do anything. You cannot "assume" him into doing what you are doing. You are choosing to do it. You can choose to limit what you do so that you don't burn out. It doesn't mean you don't love your Mom, but it will eventually have a detrimental impact on you (sounds like this has already begun).
Only hire an aid if your Mom has the funds to do it and you're her FPoA. Do not pay for this yourself. The FPoA for your Mom doesn't need your Father's permission to spend her money. I get the feeling that you'd probably micro-manage the hired aid as well. You need to adjust your expectations for your Mom's care and your participation in it. Expectation = premeditated disappointment.
Bless you for showing your love in this way to your Mom. It's all very hard, but you need to not burn yourself out -- then you'll be no help to anyone (not least of all to yourself).
You are not seeing that your going in and doing daily the things that you are doing is enabling the neglect of your mother. They know you will be in to do it.
Have you spoken with the administration?
I think that you need to understand that flossing teeth of all clients in care isn't "the norm". Mouth care is, but flossing isn't normally done in hospital or nursing home without special requests and reasons.
My recommendations are:
1. Do not spend your money on your parents. Start your own savings accounts for your own aging. You will need it.
2. Go to administration. Discuss with them your expectations versus what they can in reality provide. Come to the best compromises you are able to.
3. Allow your father to care for your mother's needs and provide visits, not daily, yourself. You are too enmeshed in your parents lives and should be concentrating perhaps more on yourself and your own needs for your own life with family and friends.
4. Consider counseling with a Licensed Social Worker in private practice. They are great at working with life transitions work. You aren't there to talk about your childhood and toilet training habits, but about your current day to day life and the expectations you have versus what may be a sad reality.
I surely do wish you the very best. This is a hard hard time for a kind and loving heart. As someone who's a bit OCD MYSELF, I sympathize with your mind's determination to bring some ORDER to this world that seems so laxadaisical and out of whack.
My very best to you and do know my heart goes out to you. I would want MY teeth flossed, too!
I also see that you are exhausted from trying to do everything for your mom.
I am truly sorry that all of your mom’s needs aren’t being met. Have you tried speaking to your mother’s nursing home about what you feel that she needs? I wouldn’t bring up anything that wasn’t truly necessary.
I am sure that you are aware that you are going above and beyond for your mom. Does she expect you to do these things or does it make you feel better to do them?
To answer your question, I have known people who have hired additional help when their family members were in a nursing home. That’s up to you but I don’t think it should be your first choice.
Nursing homes are often short staffed. Sometimes, residents only receive the bare minimum which is sad.
Have you considered that you are encouraging the staff to bypass caring for your mom because you are doing their job for them? They will not allow your mom to starve if you don’t feed her yourself.
Please get enough rest for yourself and encourage your dad to get his rest too. Unless your mom is complaining, I sincerely doubt that she would want you to bend over backwards for her.
Wishing you peace as you continue your caregiving journey. Take care.
The reason I thought a private pay aid would be helpful is because she is not getting any extra attention. I think lack of flossing and dirt under the nails is gross, I know my mother feels that way more than I do.
She is desperate to be a scratched and rubbed, she’s been that way her whole life. I was indoctrinated to do it as a young girl and I still choose to do it bc she’s in such a bad situation and I know it helps her, but yes I’m burnt out.
If I’m not there, the staff will continue to do bare minimum.