My 67-year-old mother needs around-the-clock care. I don't want to put her in a home, but I can't always be with her. What do I do?

Is this decrease in mobility temporary?

Did mom go to rehab after surgery?

Have you spoken to her doctor about whether this is her "new normal"?

24/7 care is NOT "realistic" -- or moral! for your mother to expect from you at 37. Why doesn't she want your sister to help? This also makes no sense. Was your mother sort of needy before the surgery? What kind of surgery was it? If she was catheterized, it is possible she may now have a UTI which may explain her neediness/change in behavior.

More info would be very helpful.

Hi. Thank you for your quick answer. Her mobility was declining prior to her surgery but she managed to continue to make it on her own. The surgery basically knocked her down. She did go to rehab for 20 days after surgery and therapy helped some, but she did not want to stay in there any longer because as you can imagine they were understaffed and not as attentive to her needs. Her primary care doctor said it was arthritis, but OT/PT both at the hospital and rehab felt there could be something neurological happening as she experiences weakness and delays that are not accompanied with pain. We have an appointment on May 12 with a neurologist and we're trying to make it to then to see what they say, but it has been tough.

Your mother has Parkinson's Disease. When was she diagnosed?
What surgery, when exactly, and what happened with rehab afterwards?
What's gone on with your sister? - have you asked mother, sister, or both?

Assuming your mother is mentally capable (Mental Capacity Act Code of Practice 1.1. we assume the person *does* have capacity unless proven otherwise), the decisions surrounding her current and ongoing care plans are for her to make. However, she is not free to make decisions for you, any more than anyone else on the planet is, and if you are not prepared to commit to 24/7 care (you'd be crazy if you were) you need to be frank with her about it.

In fact, especially at this stage where you are all in new territory, frankness is the key. Talk to your sister, talk to your mother, find out what the outlook for your mother's recovery and then longer-term care needs is, and then you and sister support your mother in developing a plan.

Hugs, and don't forget to breathe. There will be a way forward.

Apple, I'm sorry if this sounds harsh but your mother's expectations sound unrealistic and rather selfish.

If she needs 24/7 care, she either hires caregivers or goes to a facility (Assisted Living) where she can be around folks whose job it is to help her.

This is not your responsibility,

A lot of nerve for someone who wants 24/7 free personal care to be dictating who she does and doesn't want providing it. Your time and your life have value and if you want to GIFT part of your time to her that's great, but it's your time and nobody (with the exception of minor children you give birth to or otherwise legally agree to care for) has the right to demand any of it.

How long has your mom had Parkinson's? Surgery with anesthesia can really negatively impact folks with Parkinson's, and some never bounce back to their former level of functioning. 67 is very young to be so impaired. I think OT/PT are on the right track in thinking something neurological is going on that is affecting your mom's ability to recuperate. Hopefully you'll get some ideas from the neurologist. For Parkinson's, it's strongly advisable to have a movement disorder specialist, not a general neurologist. Your mom should seriously consider assisted living at a minimum. Her unwillingness to go into a facility is likely based on her experience at the rehab place, or general ideas about nursing homes. If she's made aware of what assisted living is like, she may be more willing to consider it. You and your sister should not get tied down with 24/7 care, especially since your mom is dealing with a progressive disease and not just an extended period of recuperation. You need to really set your foot down--easier said than done, I know. Good luck to you all!.

Hmmm...impatient when nurses/aides can't come fast enough...sister's care 'not up to par'... sounds like your mother is going down the path of enough is never good enough. If you cave in, her situation, and demands for care, will only get worse. I agree that she needs an assisted living situation with her current needs; I also think that you and your sister need to present a united front. Always accept help from a sibling who is willing to give it, despite what mother says she wants. She is not being reasonable.

"Even parents with kids get babysitters." Exactly and usually mobility increases with weight in a child. With mobility issues, there is more hands on caregiving than there ever is with a healthy child. It is a lot to ask and you have every right to help her find another solution.
It sucks nowdays, my dad (with severe mobility issues) went to a nursing home in March and they are understaffed there as well and he's not getting the response time he was used to with his wife as caregiver. But he will have to adjust.
I am sorry your mother is having such issues at a relatively younger age.

How should you come to grips with her going to a facility, or her come to grips with it?

You cannot provide 24/7 care, because then you won't be able to support yourself.

Many years ago, my gma broke her hip. She called all her friends and told them excitedly "I'm going to be an invalid and my daughter will wait on me".


Only problem, aunt worked and mom had a toddler and 2 other kids. They told gma that she was going to rehab, would learn to walk again and return to her apartment.

She never really forgave them for "sending her to live among strangers". But she learned to walk again.

" I don't think my sister offers her the level of help that I do and that is where the neediness is coming in, but she also says my sister is "mean" to her. I can't confirm it so not sure how to proceed there."

You *really* need to talk to your sister. I imagine sister has told your mother more candidly than you have that the situation as is is not sustainable, and possibly thrown in a few home truths that came across as harsh (but not necessarily any less true, mind).

Why can't you confirm? Is there history between you and sister? - as you've been sharing the care previously it didn't sound like it.

Do not disable your Mom. I would have her doctor order in home therapy. Have the therapist evaluate her needs. She may be able to do but it will take her a little longer. Your Mom is not old. With certain equipment she maybe able to do for herself. The therapist can tell you what equipment you could use.

My Mom had a small rail. Only 18 in wide. It helped her pull herself into a sit up position. Then she swung her legs around and used the bar to help her stand up. You can put a commode over the toilet taking the bar off the back. New ones come with a splash guard that goes passed the rim of the toilet. Has its own seat lid so you can remove the ones on the toilet. This will give Mom arms to push herself into a standing position and legs for stability.

There is other equipment for the tub. Shower chairs. Tub handles to help get in and out. The therapist can show Mom how to do her ADLs.

You need to make Mom aware that you cannot do her care on your own. That sis needs to do as much as she can. And its not fair to expect it. If Mom is low income, you may be able to get in home help from Medicaid. Call office of Aging and ask about an aide.

Your mom has a choice.
Accept the help of you AND your sister or SHE will have to pay for caregivers that will come in when you are unavailable.
Please note that I indicate your mom pays for caregivers. Not you, not your sister.
If mom is living in her home and she can not be alone then she needs caregivers or she moves to Assisted Living.
If she does not need medical care then she does not need a "nursing home" Assisted Living is different than a Skilled Nursing facility.

Your Mom has had a life, her life. You are 37. You need to have YOUR life. As to guilt, you aren't a felon, a murderer. You are a human being with a RIGHT TO YOUR OWN LIFE, and a human being with LIMITATIONS. Own that. If you do not, at the remarkable YOUNG (in these times) age of 67 your Mom can live another THREE DECADES. Sorry to yell at you in all capitals. I am 80. It would break my heart literally in two to think my daughter, now 60, would give up her life, some of the most quality years of freedom in retirement with her hubby, to care for ME. No, NO and NO!!!!!!!!! Wrong. Awful.
My suggestion is that your Mom get good rehab. I don't know what surgery she had or what underlying conditions, but she's about young enough to be MY DAUGHTER. She needs to get up and around. If she cannot she needs placement to the best of her assets and abilities, either Board and Care, Assisted living. You will visit. You will not abandon her nor your love for her. But you are NOT EVEN FOURTY yet. You are so young. Please don't wash your life down the drain in the name of guilt. Use the other G-word which is the more honest one. That is GRIEF. You have a right to mourn your Mom, for whatever reason, needs 24/7 care. But that isn't your burden to bear.
I am begging you to get counseling and help in working out a way to get on with the ONE LIFE you will ever have. It is a waste not to do so. Quite honestly it is, I think , a disrespect for the gift of our lives to lay them on the altar of another's needs when the other has already had a life, and now needs care.
This is your choice. When you make it I will be the first to accept your decision. What I will NOT DO is give you sympathy for that decision. It will be your own for your own life. We have free will. Even the believers among us understand that their god gave us free will.
Sorry for this hurtful decision, but not everything can be fixed or made perfect. And in an attempt to do so you will be throwing in the towel on a life of your own. IMHO. I know you will get the advice of others here. I hope you will work your way through to your own best choice.

OP, I think from your posts that you may well be making your mother worse, not better. It sounds that she is becoming more demanding, less co-operative, less willing to hear the truth, less willing to re-hab herself, less reasonable, less understanding about the needs of you and your sister.

I am sure that you love her, and find this hard to swallow. However the longer you spend on this site, the more you will hear exactly this. If your mother is behaving like this at 67, and it doesn’t stop, she will be a nightmare at 85, but still going at 95.

It is really important that you pull out of this ASAP. Not such a good idea to have live in carers, as the burden will still be on you. Turn off your phone in the night – children learn to wake and go back to sleep, and so can she. Get your sister on side before your mother alienates her permanently, and both present an ultimatum to mother – you live alone and organise your own care needs, or you go to AL.

Apple, read Atul Gwande's On Being Mortal and Roz Chast's Can't We Talk About Something More Pleasant?.

AND think about wants vs. needs.

A dutiful child helps a parent get the appropriate level of care to provide safety. They don't provide hands on care themselves at the expense of their livelihood and relationships.

So, you might want to go visit an Assisted Living facility that offers companionship and activities. From what I've read here, you can apply for Medicaid for her online. Don't expect anything, but it's worth the asking.

Only 2 options to your question;
1) home care aid or nurse

2) Shirt term rehab in a rehab facility.
good luck❤️

First your mother does not get to dictate how you spend your time.

Second, your mother is responsible for covering the cost of her care.

Third, you are 100% not responsible for providing any care at all.

Fourth, you are far too young to give up your future and impact your own retirement.

Fifth, look up Fear Obligation and Guilt, FOG.

Sixth, look up setting boundaries and sticking to them.

So sorry that your mom is in such tough shape at such a young age.

It is too bad that she didn't stay in rehab longer. When my mom needed rehab after her knee replacement, I set some rules as to what she needed to do to come home. Walk from her room to the bathroom. Get up the 3 stairs into our house. Basically that she needed to be independent mobility wise cuz I'm not getting up all night to help her! It worked well.

Now she was losing mobility again so her doc ordered PT. We are having home PT come and they come twice a week. Then I have hired aides to come in on the other days and do the PT exercises with her, as well as help her with other things. This is working out really well because she doe not listen to me about doing her exercises and it is terribly frustrating for me. I suggest you do the same thing. Ask around to find some local aids that do homecare. I found 3 wonderful women this way. They are so much help. If she doesn't like your sister or the aides there with her, let her know that the only way those visitors can be reduced is by her working hard and getting stronger and more independent.

Since your mom is in such rough shape, I'd say she kind of doesn't get much say in how things are going to happen. She can want what she wants, but that doesn't mean you need to give it to her. I tell my mom the caregivers are for ME, my peace of mind, so I can leave the house without worry.

The eval on 5/12 should be helpful. It is possible that you won't get a definitive answer at this appointment. Maybe they'll need to do tests, etc. So I would still proceed with getting help ASAP.

If she insists on calling you in the middle of the night, get her a life alert necklace to press in the event of a fall or true emergency, and turn your phone off.

Do NOT give up your life for her. You can help coordinate her care. You can personally help her, as you see fit. But your life has to come first. Do some reading on how to set boundaries and start enforcing them with her now. She won't be happy but you're not happy with the situation as it is so it needs to change.

Good luck.

Let us know how neuro goes.

Who provides the care is not her choice. Don't give up your life.

Good Morning,

Your mother's primary care doc can write the orders for VNA--physical therapy, occupational therapy, an RN will do an assessment and also home blood draws if needed.

The railing around the seat worked for my Mom as opposed to the booster seat. The booster seat you can't wipe yourself as good, you do not want Mom to get UTI's. Ask Mom's PCP about a shot of cranberry juice in the morning.

Health insurance may cover 80% of a hospital bed with railings (1/2 so they won't feel closed in) that goes up and down. A CNA can shower your Mom in a shower chair (again from your durable medical equipment store--along with a shower hose).

You do not have to do this alone. I'm surprised upon hospital discharge they did not have a "Care Plan" in place with follow up of home services. You must be proactive and ask for exactly what you need that is covered under your mother's health insurance.

I recommend going on the portal. If I write to my mother's PCP after work hours, the next morning when I wake up I have an answer on the portal. Basically you can email the practice but with a code for privacy because of the HIPPA laws.

Ask about an Up Walker Lite. Sounds like your mom is fragile right now so go by what the doc says. After a while you will learn the routine. Keep the landline, also have an extension in the bedroom.

Make sure you can the paperwork to discuss her medical, dental, etc. A lifeline button and/or a camera/sensor on the door can send you a text if mom goes out the door. Your internet provider can supply this. You don't have to spend a lot of $$$ on this.

Clean clothing with baking soda and vinegar. No area rugs, throw out all walk-in shoes. Good lighting, a routine and tell the doc bring on the troops, services.

There is help available. I will pray for you.

Some cases of Parkinson's can be very difficult to diagnose even by neurologists. The suggestion to seek out a movement disorder specialist is very wise... it is ok to start with a neurologist but if Parkinson's or another movement disorder is suggested, ask for a referral to a movement disorder specialist for a clear diagnosis and best treatment. When our primary care doctor referred my husband to a neurologist, I pulled out my "Better Homes and Gardens" family medical guide (34 years ago) to learn about what a neurologist treats. When I read the 2-3 paragraphs about Parkinson's, I saw many of the symptoms he was exhibiting because his was a very classic case, except without tremors in the beginning. I was then more prepared when we got to the neurologist to ask more in depth questions when we got the diagnosis. You are fortunate to have the internet now so I suggest reading what a neurologist treats. BUT, whatever you read, do not assume any diagnosis or think the worst because so many neurological symptoms can overlap and some can even be temporary. Be careful researching anything medical on the internet... only use qualified sites like Mayo clinic, NIH, Parkinson's Foundation, University Medical Schools, etc. There are so many sites trying to sell unfounded cures or other scams.

I think best solution would be to find
best assisted living with lots hands on care …she/family can afford. It’s very dangerous for her to be alone even for couple hours day or night.
Tell your mom you can’t take good care of her 24/7 and she’s not safe .
iMHO a good facility much better than being isolated with caregiver at home… she’ll have lots people around all day.. activities.. company.. and the help she needs .
But you’ll have to come terms with guilt … it means you’re a caring person. We all have !!! Know that you’re keeping your mother safe and you’re doing best you can… visit a lot
stay for some activities.. bring little presents .. and take her outings often.
best luck

Your Mom sounds demanding and at Your age you need to set boundaries or you will forever be waiting on her . Get her to the Nuerologist and get more PT / OT . Get yourself a social worker or therapist .

I know just what you feel. Have just/am just going through this with my mom. She's 92 but was in good health up until this past January when she fell. She has been in hospital, rehab, back in hospital, rehab again... and it became clear that she would need 24-7 help going forward. The rehab had an open bed in their skilled nursing section and she moved there. It was a transition to be able take a breath and figure what's next, how can we construct 24/7 care at home? It's just me here as my brother and sister live elsewhere. I am not - will not be ready to give up my life for her care and I have the same guilt you have. My logical brain knows that it would be impossible - I don't have the time, patience, skill set, ability to provide that care for her. It is SO difficult and what you are feeling is normal. I can tell that my mom is getting great care. But, it's heartbreaking because there is still so much of "herself" still there - she wonders, "why am I here and not home?" That's killer. But, then, she will forget something or be confused and I KNOW that she's where she needs to be. Someone on this board clarified for me that the guilt is really grief. You are going through a lot of emotions inside yourself. But, you are just not able to do it all - even though you want to or would like to believe you can. It is a process and transition. But, it sounds like your mom does require nursing home care. You will feel guilt, sadness, but, it will get better. Good luck.

Put aside the Guilt part. You do not need to re-structure your life to accommodate your mother. It might be convenient for her if you would just take over her care, but that's not realistic. If she cannot be alone, it will necessitate in-home help or placement in a facility. Yes, either would be expensive, whether her money or yours. If her ability to care for herself might improve, temporary facility placement might give her time to improve enough to be able to return home alone. It would be self-pay. If she is going to continue to decline, the facility or home care would be permanent.
Do not take over her care out of guilt.

Great answers and suggestions here which I hope have been somewhat helpful to you. As has been stated, you are not God so don't worry about being on 24 hour call and you can drop the guilt. You are being a loving daughter who is doing the best to find suitable care for your Mom. She is only 67, hardly "old" in today's terms and may be going strong for another 20 years. You on the other hand are just beginning to live your adult life so please don't give it up. Caregiving is 27/8 - yeah I typed that correctly. DO NOT continue to enable Mom's increasing bad habits. Check in with her local Office on Aging and see if you can get a needs assessment which will give you an idea of what type of services she needs. There are some services out there for minimal or no cost such as Meals on Wheels. You don't mention her financial status but beaware that memory care (MC) and Assisted Living (AL) are not cheap but if she is not going to attempt to save herself, her needs will increase going forward so you might want to research ALs now. Medicare as you now know, is a health insurance paying for skilled nursing and rehabilitation for a limited time. It will not pay for custodial care. Medicaid pays over 80% of the cost of long term custodial care (LTC) in the country but Medicaid administration differs from state to state. The number of ALs that will accept Medicaid is pretty low in most states so I would suggest you get in touch with Medicaid (after her evaluation) now to see for what programs she might qualify. Medicaid in many states has a number of programs that help senior successfully stay in their homes as they age. You can also check with the Office on Aging to see if there is a PACE center ( Program of All-inclusive Care for the Elderly) in her area. Here's what the NJ Dept of Health has to say about PACE:

"Medicare program that provides frail individuals age 55 and older comprehensive medical and social services coordinated and provided by an interdisciplinary team of professionals in a community-based center and in their homes, helping program participants delay or avoid long-term nursing home care. Each PACE participant receives customized care that is planned and delivered by a coordinated, interdisciplinary team of professionals working at the center. The team meets regularly with each participant and his or her representative in order to assess the participant's needs. A participant's care plan usually integrates some home care services from the team with several visits each week to the PACE center, which serves as the hub for medical care, rehabilitation, social activities and dining."

I got quite a few patients into this program in central New Jersey and they (and their long suffering caring families) fell in love with it.

Wishing your and your sister (get her back on your train because this takes teamwork) good luck. And turn off your phone at night!!

My dad qualified for a certain amount of hours each week of paid for care. It was through a local state agency called Seniors With Disabilities. This allowed me time each week to go shopping, have a meal out etc. The Caregiver also did light housekeeping duties which were helpful just to give me a break. I also found a person from my church who was willing to come stay with him on another day of the week and we paid that person out of pocket. I also got a small camera that I put in my dads room so I could monitor him from my phone if I wanted to be out in the yard for awhile. This also helped at night to make sure he didn’t get up by himself in the middle of the night.

Small part of discussion. Get a bidet attachment and try it out. It really helps with sanitation and easing bowel movements. Do monitor so she doesn't shower the bathroom, but they are wonderful. Amazon has them, may be able to return it if not helpful. Can't remember; they did replace one that broke very quickly.