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?

Apples, when my mom, age 90, post stroke was in rehab, she had NO time for me. She was busy working towards regaining the ability to walk, speak and dress herself.

Rehab is NOT about being kept company and pampered. Your mother has one chance to regain her functionality.

If you visit, use the time to be a cheerleader and to learn the exercises the PT and OT are doing so you can do them with her at other times. She should be working 3 hours a day at exercise.

Apple: I am go to repeat my previous advice:

,..., 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.

Apple, YOUR needs count too. Just because wants you there, make a fuss about your arrival or departure time does not become an obligation for you to forfeit your life, livelihood or health.

How is rehab going for her? Is she working hard?

UPDATE #2 and SEEKING MORE ADVICE: Thanks again for the responses. I have been reading every single one and taking note of all of the great suggestions and advice.

I know it's been addressed when I was at home, but my mother is now in rehabilitation and I am currently dealing with the issue again of her wanting me there with her all the time. I go everyday and stay for long periods of time. We all know the shortage of workers in these facilities. For the most part she is safe and cared for, but they are just not as attentive to her as she would like.

Long story short - I know I am still enabling her. She has a meltdown when I am leaving too early or when I don't get there early enough or ... when she realizes that my sister is coming to sit with her rather than me. What do I do? How do I break out of this cycle? How do I firm up? Welcoming any and all suggestions.

Your mother is young to be going through this, and so are you. Have you talked to her doctor about what her prognosis is? Does her doctor expect her to fully recover in time? Usually people need physical or occupational therapy after surgery to make sure they can do all of the things that are needed for daily life. Have you talked to your mother about a plan B, if her health continues to decline and she needs more help? Make sure your mother has all of her paperwork in order with a living will (her advance medical directives), powers of attorney for financial and medical matters, a will if she has assets. Get connected with a local social worker who can advise you both on what her options are regarding home care, or moving to a facility. Much will depend on her finances. Please don't give up your own life. You need to create some security for yourself and your future. Be honest with yourself and your mother about what you are capable of doing for her. If she does move to a facility, try to find one close to you so that you can visit often and oversee her care. All the best to you both!

If your mom is still mentally fit I don’t think you can just put her in a facility. To put her in a facility she would have to be declared TOTALLY incapacitated. You will need letters from the doctors verifying this incapacity. You may also need medical POA.

There are lots of agencies and price ranges for at home assistance. I would check also with your local Council on Aging for types of assistance they can provide such as respite care.

Another source of assistance is through medicade if she is receiving medicade benefits. They have programs for “ In Home Supportive Services”. You have to make separate application. They will come to home and determine number of hours she is eligible to receive support at home. Someone will have to approve time card for person who comes to home.
They provide light house keeping, personal care, meal prep, etc.

I don’t believe you mentioned who would be paying for the help. If your mom does not want your sister and she has money to pay for help then it’s up to her to pay for some help, you can’t do everything . If you are doing all the work and have to pay for help it’s up to you who helps and how and when.

Also keep in mind your mom could live another 20-30 years and it’ll be better to make the hard decisions now while she’s still “young” enough to do more things on her own. I’ve seen relatives who’ve had issues, been cared for, and ended up behaving like a queen/king because they liked the attention they got when initially ill and wanted it to go on forever with caregivers at their beck and call. They didn’t give rehab exercises a chance to work and wouldn’t try to get better because they were so happy with the attention.

What you’re feeling is normal. But you need to put her where professionals can care for her. She’ll be better off in a home and you will be better off as well.

If the money is there, put her in the nursing home.

I was put in the very same position in 2018 at 26, only I had zero relief. Only in my case, my mom was in the middle of cancer treatments and fell and hurt her ankle.

Also, try to convince her to exercise regularly and not sit around and do nothing all day long. Try to put your foot down and make her get extra help or do PT if need be.

Apples5: I did see your update wherein you stated that your mother found the issue by going to the hospital.

Have you discussed a nursing home post surgery???? What does the doctor recommend?

Don't let her medical issues ruin two lives. The best way to make both of you happy is for both of you to accept the inevitable: placement. If she refuses, contact Adult Protective Services to get her a social worker who can evaluate her situation.

Thank you for the update. While you can, I would suggest that you talk to your state's SHIP office to find out what, when, and how long can you get help for your mother. Some of the assistance available is not income or asset based and you can use it with home-based care rather than staying at a facility.

Think of this as a temporary halt on the insanity so that you can get yourself better acquainted with the rules and develop a future plan for your mother and yourselves. If your mother is not in too much pain and she is cognizant of what is happening, she can also participate in the planning, which will take her mind off the pain that she is going through. The plans you come up with now, will probably help you through the future, even if you don't need them within the next year or so.

Good luck!

I read your update and that is good news. Assuming things work out and she doesn’t need regular care right now, use this time (your mother, your sister and you) to make a workable plan for your mother’s needs in the future. It will be all hands on deck and your Mom has to realize she can’t exclusively lean on you. You need to think about the fact that you are young and not a martyr- no matter how much you love her you deserve to live the life of a 37 year old. I am in my mid-sixties taking care of my 95 y/o mother, but I had my younger years, got married, had a career and had a chance to live. I am retired so at least I have the time to do care. Your mother is fairly young to need such care. It could go on for years. You are probably still working? Single? Newly married? Kids? Think about your choices and do the best you can to keep her safe and happy but do not sacrifice your whole life. You show her you love her by doing what you can not what you can’t.

UPDATE: First a BIG thanks to everyone that has weighed in here. There is a wealth of knowledge being poured in and I am truly grateful. Second, to update on my mom - She begged me to take her to the ER saying she felt something just wasn't right and she was declining. I was trying to get her to just make it to the appointment we had for the neurologist, but she was insistent, so I took her to the hospital.

The hospital did an MRI and they believe they found the issue! To summarize - she has a spinal issue that was pinching nerves causing her pain and delays. An answer! And the better part is there an operation that can fix it, but they are suggesting she get evaluated and do a few weeks of therapy to get stronger in order to be in the best possible condition before she does get surgery. From what the doctor says, this operation could significantly improve her ability to move and give her a much better quality of life. There are of course a few things to navigate between here and the potential surgery so I may be back to seek more advice, but it is good to know what is going on and that there may be a solution!

Thank you all again so much. I appreciate the outpouring of advice and support more than you may ever know.

I can relate to your situation. Just remember either placing her in a facility whether it be a nursing home or living assistance is caring for her! You care enough to make a sound decision for your sanity and her safety. We are only human and yes we have limitations. It’s is so very different caring for an adult as opposed to a child. Just don’t forsake her if you put her in a home. Visit often even if for short periods and “never” feel guilty.
Sending encouragement to you on this journey💕

Do what's in your heart. Only you will be the one who has to deal with your conscious. I'm quite sure she has worked. Therefore, you would have to contact someone like her insurance, doctor which that doctor could assign someone to assist. the insurance co. could pay for certain days and the other if you can afford to assist pay for additional days that someone could come an assist. I believe it could work out. Check out your options and pray. God Bless You and Your Family.
By the way i think your mom either doesn't want to burden your sister any longer or she just misses you and or your nicer. I don't know but if your sister is ok with helping your mom. i don't understand why she doesn't stay put. you could go and help out when you can financially, visits etc.

While you are sorting this out, have a talk with mom. Sister WILL be helping because you can't manage alone. Mom doesn't get a say so in who helps you. It comes down to taking they help from anyone willing to help both of you.

Does mom have loads of money stashed for old age? If so, start using it.
If not, you figure out who covers what hours of mom's care, if there is even minimal income from mom to cover hired help for the gaps. Tell mom you quitting your job and staying home at the age of 37 is NOT an option. You have your own future/old age to plan for and need earnings for that.
Talk to her doctor about rehab care to see if mom can build herself back up. Perhaps she got out of hospital and sent home when she should have been sent to rehab.

You could look into additional health care to come into the home. Since she just had surgery it is also possible she may need some rehabilitation. You could check with her insurance to see if they would cover physical therapy to come into the home to help her regain her strength.

If insurance does not cover the cost you can also look into a program like IRIS. They not only will cover things that are not covered by insurance, but will pay for healthcare providers including family. Your mother can remain in charge of who she wants. It is not like dumping her in home where they take away everything you have and you often neglect and abuse people.

The best program we have here is IRIS, but every state should have something similar. Especially if your mother could not afford to pay for the help or things she may now need in her home to help with her. This is a great option. You could also be paid as one of her health care givers giving you income to help yourself and your mother if you like.

Your mum is only a year older than me. I am lucky to be very fit and healthy, but if I wasn't I wouldn't expect and wouldn't allow my children to look after me. In fact I wouldn't let them even if they wanted to. I didn't give them life to become my carers. I have given up my life caring for others and I will never get that time back and I'm desperate to have my own life again. There has to be alternatives. I am determined never to need somebody to care for me, but if I do I will pay for it and let my children enjoy their lives.

Reading through your responses below it sounds to me that you may have two issues going on here simultaneously. The first is your moms actual health and issues, it sounds like you are working on her health and it will be hard to see the big picture until the neurologist and any other specialists have done their thing. Just to prep you this first appointment probably won’t give you all the answers if she has a neurological component, there is bound to at least be further testing. But aside from that it sounds like your mother isn’t really as invested in getting back to where she was prior to surgery as you and your sister are. Wether it’s because she’s depressed, frightened, actually isn't able to or just her personality it doesn’t sound like she’s putting in the work to become independent again. Medicare will only continue to pay for OT/PT as long as she is improving and it sounds like there came a point shortly after she came home that she was no longer meeting the marks. It is far easier to continue improving in residential rehab than it is at home because you have less choices, I’m not clear if she was continuing to improve in rehab or had stopped meeting the marks to stay there but once home a patient needs to be self motivated to continue significant improvement. Which brings me to the other issue here.

I have a mother who is not particularly self motivated as a rule so speaking from some experience here. I would venture to guess that your mother’s desire to have you around all the time and not your sister is that you are quicker to just do everything for her where as your sister expects her to do the things for herself that she can or at least try. It’s over simplifying but you feel guilty letting mom struggle and your sister feels guilty not helping her get back to where she was by making her struggle. You both want the same thing but come at it from two extremes. I remember the speech therapist telling us not to help my mom so quickly when she was trying to say something (aphasia post stroke) but don’t let her get too frustrated either. It was so hard at first for me to let her struggle when I knew what she was trying to say, my brother was much better at just letting her struggle and we both had to find that balance of knowing when it was time to help before she got too frustrated and shut down. The lack of immediate response or help in rehab may have been in part to them encouraging her to try and do it for herself as well as being under staffed and her growing dependence on you may be more about other caregivers, including your sister, trying to get her to do things for herself which seems “mean” to her compared to you who runs around making her life easy while making your own hard because she isn’t motivated to do it for herself. She may never be too, able and wanting to are very different but can become very blurred.

Whatever the medical or emotional reasoning I think you need to ask your mother what she wants. Not in an exasperated moment or a negative way at all but very sincerely what does your mother hope for, how does she see the next 6 months? Is she hoping you come to live with her and be her sole caregiver, does she expect things to go back to the way they were before her surgery, does she want them too? Does she want to stay in the home she is in or does she want to move somewhere else (not necessarily a NH)? Then you can both give some thought to what she really wants and how that could happen and pick up the conversation another time. Then have a conversation with your sister about what’s happening and what you are each actually able to do moving forward. The need is going to get greater as time goes on, now is the time to visit what that might look like. Maybe then the 3 of you can revisit the conversation together and start to express the roadblocks as well as options for attaining the various options. This is going to be on going and fluid process it won’t all be solved in one conversation.

GLuck

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.

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.

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!!

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.

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.

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 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

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.

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.

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

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.