My mother had unexpected surgery and has declined significantly since then, which propelled me into the world of caregiving. Her mobility is hindered and she needs help getting in and out of bed, getting on and off the toilet, moving around, etc. She can walk, but still pretty much needs someone with her 24-7. My sister and I have been trading off, but my mother no longer wants my sister to help. I can't be here 24-7, but I think that is what my mom wants. I am 37 and not ready to give up my life and I feel guilty for that, but is that even a realistic expectation for her to have? I know in-home care will get expensive, but I am not sure what else to do. I don't want to put her in a nursing home, but a friend told me that if she needs someone around the clock, she doesn't need to be at home. I feel stuck because I don't want to feel guilty about not always being here, but I want to care for her the best I can. This is all new to me and I feel extremely overwhelmed. Any advice or suggestions?
Did mom go to rehab after surgery?
Have you spoken to her doctor about whether this is her "new normal"?
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.
More info would be very helpful.
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.
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,
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.
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.
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.
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.
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.
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.
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.
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.
1) home care aid or nurse
2) Shirt term rehab in a rehab facility.
good luck❤️
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.
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.
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.
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
Do not take over her care out of guilt.
"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!!