My mom is ready for assisted living but my siblings and mom are reluctant to take this step. I understand this but I don’t think my mom should be living alone. It is only a matter of time for this to become a reality.
While I start to find an AL facility I was thinking perhaps visiting nurses would work for a time. I have my doubts.
Mom (90) has terrible, painful health issues. Among other issues she has a condition called Trygeminal Neuralgia and she’s having a very painful episode. Her meds make her confused. Her days and nights are mixed up and she is taking too little or too much. She can’t eat much. Really I think we should take her to hospital.
I’m my husband’s caregiver as he recovers from a bone marrow transplant so this is a bit harder to manage now. Siblings are pitching in but I don’t understand the way they are dealing with this.
My mom is suffering which I’m sure is contributing to this decline, but her ability to continue as she has is greatly diminished.
Would visiting nurses be able to manage this? We set up a pill box but she’s not understanding it. I know AL is the best option but how do I get my siblings to agree?
TM
The caregivers on this forum are scattered across the country, some even in other countries and have had many different experiences. Just know that we each answer based on our own experience or opinion.
I can tell you that traditional medicare Part B covers home health for patients who do not require 24/7 skilled nursing care but would benefit from less than 24/7 skilled nursing if they are considered home bound. Your mom would qualify if she has that insurance. Others may also offer it. I’m only familiar with original Medicare. The various agencies can be found listed on Medicare.gov or online. You will need a drs order. Usually it’s the primary who signs the order.
The nurses visit is about like going to the doctors office. They assess the patient, take vitals, set up pills, arrange for CNAs if needed for bathing, arrange physical therapy etc as needed, they will do wound care as needed. Can collect for UTI, do blood work. It is not for custodial care. They usually only come once a week but can come more often if the doctor orders it such as for wound care when a bandage needs changing more often.
The benefit is you have a regular medical check on mom without having to take her into the doctor for many services.
In the situation you are in, or mom is in, she may need someone to help her with her meds on a daily basis. I hired someone for two hours each day and they helped with meds, breakfast and lunch prep. This in addition to home health. We expanded the hours as needed. But my LO took all her meds each morning. Your mom may take hers as needed or throughout the day. Usually a non nurse will offer the meds or remind the patient it is time to take them etc. I had good luck with aunts daily aide. My mom was able to manage her own although HH set up her pill box etc.
I found home health very helpful with my mom and DH aunt. But again, they aren’t there to be a sitter or caregiver.
I personally would want my mom to have 24/7 access to pain meds with such a horrible disorder.
I was diagnosed with Trygeminal Neuralgia back in 2020 ~due to a symptoms of sharp stabbing pain and a C Reactive Protein reading of 28. Thankfully the diagnosis was wrong. I was terrified at the prospect of going through life with such a disorder as they explained it. I’m so sorry your mom is going through this. I was given morphine and steroids and put on gabapentin until they realized I didn’t need it. Hopefully your siblings realize how awful the pain is and don’t let her suffer.
Good luck finding her a good helper. Hopefully your DH will be better soon as well.
Tell them that this would be a "Respite" stay.
I bet that once mom is getting regular contact, consistent medication administered she may feel better.
Even if after 2 weeks she still does not want to be in AL your sisters may find that they like not having to be doing all that they are doing for mom and they can once again focus on their own families.
Your mom should not be living alone.
When you say she is confused, she has her day and night mixed up, not taking medications properly and can not eat much this all says to me that she should not be alone.
Have you explored other treatments for her, like botox injections and stereotactic radio surgery (radiation)? Her age makes other, more invasive forms of treatment inappropriate for her... but her current medication may stop being effective, which is a common problem in treating this pain. If it were me or my Mom I'd overturn every rock to figure out how to find her relief. It's called The Suicide Pain for a reason.
live with you? Sounds like your mom should benefits hospice care. And on top of that, you should find a caregiving company to have continue come out and help her or you with the medications. That is SO IMPORTANT.
I didn’t realize it, until my friend said I needed a caregiver to help meet my husband. Doing this alone is so stressful. And now you are caring for 2 people.
You may want to get a man who can help you with your husband, and also help with your mom..
think about it. More people will respond. That added layer of caregiving helped me out a lot. I didn’t know I needdd it.
caregiving burnout. It is real. You may need just a break for a bit
If you think mom should go to the hospital though then she should go. At that point you can stress to the medical staff, the Social Worker that mom can not be discharged to home. That might make it a bit more "real" for mom and siblings.
After mom's last hospitalization for double pneumonia and a collapsed lung, the visiting nurse came for "wound care". She kept asking mom to show her the wound and mom said she didn't have one. So the nurse wrote her up as "refusing care". I'm sure there are some wonderful visiting nurses out there, but our experience was not good.
Your mom needs a physician managing her care and potentially ordering home services (if you can get them to do that). But in the long run, she is going to need much more. I know how hard it is, and I wish you the best.
Unless your Mom has a lot of money, she probably could not afford an RN. My DD is one and has made an average of 90/95k a year in the last few years. If your Moms main Caregiver than the decision to place her is yours. If she is not taking her medications correctly, then an AL is a good choice. It will also give u more time with ur DH.
Thanks for your responses.
If your mother right now needs as much assistance as you indicate, perhaps her doctor would send her temporarily to a skilled nursing facility while you look for assisted living for the longer term, after she recovers more. The amount of assistance she needs right now sounds like too much to try to have at home or even in an AL. BTW, I am familiar with trigeminal neuralgia, and I know how awful it can be. That that's also going on right now is another reason she needs more comprehensive care right now than she can receive at home with the amount of assistance that might reasonably be available. Please speak to her doctor, although as you probably know, he can't speak to you about her condition without her permission if you are not her health care POA.
Re your sisters, you are the one taking responsibility right now. Does any of you have health care POA? That will make a difference in who can make decisions. Your mother is fortunate to have you looking after her welfare! Hugs!
Does Mom have dementia?
It doesn't sound like she should be living alone.
If she JUST needed someone to manage her medications for a couple of weeks until her confusion (say post surgical) cleared up, the Home Health Care (what visiting nurses provide MIGHT be appropriate), but if her confusion is from dementia, that's only going to get worse.