Follow
Share

My sister fell two weeks ago at the Memory Care of an ALF. Prior to the fall, she was active but was placed there as she had "sundowning" every day and I had difficulty stopping her from leaving the home. The fall caused a large brain bleed. Placed in trauma ICU and had another spontaneous bleed on the other side of her brain. She lost her speech, did not know how to chew, could not walk, and had her fists clenched all the time. She did not recognize me. After 10 days in hospital, she was discharged to a SNF. I am scared of elder care facilities and want to find a live-in caregiver through private pay. Anyone has any idea where I could find such a person.

First of all, I am so sorry for this dire circumstance.

But, do you fully understand the cost of this hope for home-going? Just over a year ago I saw 100s of thousands of dollar hemorrhage out of my friends accounts as she had the 24/7 care of two women, 12 hour shifts, 24/7. And they were CHEAP at 20.00 an hour. Figure out the cost for a day. A week. A month. It is enormous.
You are here describing someone who is unfortunately likely needing hospice care. If those fists are still clenched you are looking at decerebrate posturing which indicates SEVERE damage to the brain from which recovery is almost certainly not going to happen. If there is a choice for tube feedings and such to sustain life in this condition, this can go on for a long long time and requires nursing care, not a sitter. Skin breakdown will ensue. This is very costly care which unless there is a great deal of individual wealth I cannot imagine this being sustainable.

You now have used the time that medicare will allow for SNF or for any rehab hope (there is little) and the facility will not keep the patient; long term care either temporarily or pemanently is required until you make home arrangements, which I as an RN would never attempt to do for my own family in this condition. Your loved one will quickly move, according to law, from Medicare to "private pay". So if there is money, at 600.00 a day it will quickly evaporate.

There should be placement now. Time will be the arbiter in this sad and dire situation. I am so dreadfully sorry. I would opt now for LTC placement which will be easier done through this facility than from home, and would discuss hospice care with doctors. I hope someone knows this dear one's wishes for end of life care. I would not want artifical feedings by tubes or IVs and that is already written in my own advance directive. It prolongs greatly what is a torturous situation.
Helpful Answer (8)
Reply to AlvaDeer
Report

Your sister should be receiving therapy in the nursing home setting to see if she can regain function lost due to recent events. This is important. Therapy in a home setting is rarely if ever as effective. SNF facilities need to be evaluated one at a time, there are both good and bad, just like most things in life. (Though I’m sure the forum’s resident nursing home hater will likely be along to pour on some negativity and a dose of guilt minus any compassion) Your sister’s care needs at this point are pretty intense, one live in caregiver is not a realistic solution. Does your sister have you or someone else appointed as her Power of Attorney to make decisions for her healthcare decisions for a time when she cannot decide for herself? Can she make reliable choices for herself now? There’s a lot to consider here, bringing her home is complicated and will be exhausting for all, possibly even unsafe
Helpful Answer (6)
Reply to Daughterof1930
Report

From what you've described, your sister should NOT be returning home with the help of a live in caregiver as she now requires WAY too much care for just one person.
What you would be asking of this one person is not fair and I don't believe anyone in their right mind would accept the responsibility of it all.
Your sister now requires 24/7 care with a whole team of people and therapists(PT & OT)to care for her, so your job(or whoever is her POA)should be to find the right nursing facility that will continue with her therapies so that perhaps one day she can return to the memory care from where she came.
Helpful Answer (6)
Reply to funkygrandma59
Report

I am so sorry for your situation. I wholeheartedly agree with AlvaDeer. But if you decide to bring your loved one home, contact reputable agencies in your area. You can contact "A Place For Mom" who can match you with agencies that can meet your needs for live-in help. Some agencies provide such and some don't. The agencies will call you and you can interview them by phone about qualifications of staff, fees, etc. They will also discuss if your need for care is immediate. My Mom had two live-in aids. They alternated weeks. But Mom did not have severe medical issues. Her mobility was compromised. She also had long term care insurance. With a live-in aid, the aid will need a place to sleep in the home for 8 hours a day, and usually at least 1 meal per day needs to be provided for the aid. It was almost half the cost of two 12 hour shifts. If your loved one needs awake staff at night, you'll need two 12 hour shifts a day. That is much more expensive. A dear friend of the family had such care. I wish you well in your decisions. You may opt for a Skilled Nursing placement while you consider the implications of bringing your loved one home.
Helpful Answer (2)
Reply to JanPeck123
Report

If you have made it clear that you don’t want M to stay in the SNF, and you “want to find a live-in caregiver through private pay”, you need to get on and do it. After 3 weeks, you ask if “anyone has any idea where I could find such a person”? No wonder the SNF is losing patience.

As explained in other posts, you may have difficult ‘finding’ and even more difficulty ‘paying’ such a person (or one person plus one or more relief). This is about adequate care for your sister, not whether or why you are "scared of elder care facilities". Reconsider the practicalities of this - quickly!
Helpful Answer (2)
Reply to MargaretMcKen
Report

Hi,
An online search for 'home health care' should work, or you can go to Google maps and search for Home health that way too, to identify companies with an in-town office. You can call her prior MC and ask if they have a company they've worked with and like, and you can ask the discharge planner that's assigned to your sister at the SNF. You may also want to ask her care team if hospice is reasonable--you don't say much here about her level of functioning, but I'd refuse for them to discharge her until you have everything lined up--work with her discharge planner/social worker at the SNF.
Helpful Answer (1)
Reply to ElizabethY
Report

Keep working on the caregiver and then she can go home with a safe discharge. You will need back up support with any sick calls. Her Medicare will not provide as much coverage so keep in mind that she will have a daily extra charge until discharge. You focus should just be in finding that care. I expect she has deeper pockets than the SNF charges . Good luck.
Helpful Answer (1)
Reply to MACinCT
Report

I am currently using Care.com I have not personally made a connection yet, but it was recommended but others who have used it with good results. My husband is a veteran and receives caregiver hours through an agency but I am searching for private pay caregivers to supplement the hours the VA provides. If you decide to use an agency... please know it is ok to use more than one at a time and it is also ok to change agencies at any time you are not comfortable with the services. I agree with others that it sounds as though you may need more than one caregiver at a time at least during certain times of the day. So, as you move forward keep good notes of each person or agency you contact before making a decision and unless money is no concern, you may find it cost prohibitive. A SNF can discharge for lack of progress in rehab but they have to make it a safe transition. The social worker there is suppose to be the one to be sure you have the information you need that is appropriate for your local area. Do not let them discharge to your care if you are not ready. You can refuse and they will have to send her to the hospital who will then help you search for proper arrangements.

You may want to consider letting her go to a facility and if money is not a concern you can pay a "sitter/caregiver" to stay with her at least over night to see that she receives the care she requires. Unfortunately Memory Care is only ALF and can no longer care for her if she requires a higher level of care now.
Helpful Answer (1)
Reply to KPWCSC
Report

Care.com is good place to start.

Make sure that you find more than one for the job. Even the live-in caregiver will require breaks, nights off, days off. The amount of hands-on care will depend on her physical condition.

You should also contact an elder attorney to help you set up the contract between your sister and the caregiver to keep all records above board.
Helpful Answer (1)
Reply to my2cents
Report

JamaicanDawta: Your sister should be receiving PT and OT at the SNF.
Helpful Answer (1)
Reply to Llamalover47
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter