Live-in care partner

T. Slothrop

My DW has developed some durable delusions over the last few months, including frequent instances where she does not recognize me as her husband (47 years).  In my small (so far) research into MC options, I am not eager to move into a new place that would have IL with adjacent AL and MC. I have a big house with an apartment that could make a residence for a care partner. 

Does anyone have experience with such? Advice?

David J

I considered live in or 24/7 in home care, but I ended up placing her in MC. It provides round the clock care with multiple trained care givers, nurses, and other professionals.  To provide the same level of care at home, the cost would be unaffordable for me, and would still involve me 24/7.  I know people who have in-home care, and it is almost as involving as being the sole caregiver. Guess who covers odd shifts, when the scheduled care giver falls in, or is on vacation?  In my view, it is more costly and doesn’t provide the seamless care you need.

T. Slothrop

Thanks David. Did she move to MC with ease? Do you visit her frequently?

David J

T, 

The move went better than I thought. Besides some medication issues that I’ve written about, she adapted pretty well. She never asked to go home, except when we had a few trips to the ER, and returning to the MCF calmed her right down. 

I visit 2-4 times per week. The MCF is 10 minutes away and I pass by several times per week doing errands. 

There are lots of threads in the archives concerning the placement decision, the move in, acclimation by the PWD and the caregiver. The archives  can be difficult to use, so go ahead and ask questions, even if you think it has been asked before. 

Dave

T. Slothrop

Thanks David. From your profile I glean that you are further along than I, that your wife is further downslope than mine; true? But the slope here is steepening, and I’m trying to plan.

I do not want to move out of my house, in an interesting urban neighborhood that is a ten-minute walk from my son, his wife, and my granddaughter.  MC in my city is expensive, and I am hoping I could find a resident care partner for at least a few years, or even months. I have not seen a thread herein that focuses on the unexpected aspects of that solution. Do you have any tricks or advice for searching the archive here, or have you noticed a relevant thread?

I bet you miss your old life with her. 

ButterflyWings

TS- I would like the live-in help option too but can’t even imagine working through the process right now. Lots to consider and I have zero capacity to start because I’m sole CG. Vicious circle. 

Here is a link to some threads on the topic “Live-in help”. Happy Hunting. I’ll be reading these too. https://www.alzconnected.org/discussion.aspx?g=search

T. Slothrop

Butterfly: Thanks for your guidance to the search function! I’m reading and learning already. 

I’m sorry to hear that you’re juggling so furiously. Will you say more?

ButterflyWings

You’re quite welcome TS. But I actually intended to post the search results for that topic.  Not sure what I did wrong. It is a bit finicky this site of ours. 

I re-ran that search and changed the filter to match exact phrase. Hoping this links you to the actual threads that popped up in the results this time. There were several posts on “Live in caregiver” also... with and without the hyphen/dash.  

 https://www.alzconnected.org/discussion.aspx?g=search

Rick4407

I have done this, gotten a live in helper for caregiving.  Through a friend I had hired the lady for once weekly house cleaning, two or three hours each week.  After several months I asked if she was interested in a live-in arrangement at the same rate, + full room and board.  She had been living with a girl friend for 6 years and in a sort of minimum wage job, receptionist.  The intent was occasional assistance with my DW as well as house keeping.  After 3-4 months she quit her receptionist due to a conflict at work.  She had another job lined up and I offered her $500 per week to be a part time caregiver here.  She accepted that with some enthusiasm.  She has been here about 2 months now.   

Her background was 3 years toward a BSN when she was young and then life experience in nursing homes and working in healthcare administration.  She is 62 and generally pleasant.  She is very good with my DW.  Probably distracts her and entertains her 2-3 hours per day.  She also still keeps the house and cooks very occasionally.   For me it is not only the assistance but adult conversation that is very nice.  I unexpectedly had emergency surgery and was gone for 2 days, she just stepped right up and took care of everything.  I don't think my DW even knew I had been gone when I came home.  

Her employment after the first couple of weeks went from informal to traditional employment.  I have a CPA who set everything up and her salary and expenses are tax deductible.  With direct costs being about $2500 per month it is considerably less expensive than MC.  It is as well better for my DW who continues to be happy and cooperative.  I have hopes it will allow me to keep my wife here until the end.  

She has her own bedroom and bathroom in a separate part of the house.  I have given her a credit card to use for occasional grocery purchases.  I also pay $250 a month for a small healthcare policy she has.   I provided her a car and pay for her car insurance.  For me it is very good and from my view it would seem to be good circumstances for her.  

I think I was lucky in finding someone with some credentials who was not in a more traditional living situation.   She has now been here for 6 months and it seems to be working fairly well.   

I think the key is choosing well and being then being fairly relaxed about your expectations,  and of course having good luck.   I hope you can find a situation that works for you, Rick

T. Slothrop

Thank you Rick! Good info, and a good story for you and your wife, so far. Good luck and please say more as things change. 

Tyrone

Old89

This is to add a personal experience, not suggesting everyone will have the same at all.  I was sold on this idea.  I really wanted to do it and had two extra rooms in a nice home and was willing to pay $30 per hour in addition to room and board.  I did not know anybody and advertised on Care.com and Indeed.com.   It was a long tiring process, and I never did find anyone who was truly willing and qualified.   So in the interim I have had a 40 hour a week caregiver.  An agency we used was terrible in that the caregivers called off work on short notice repeatedly.   We had so many I lost track.  And all feedback we received was that we were easy, it was just that the agency sent us young mothers who could not juggle their childrens needs and full time work.  Finally we have a stable full time caregiver and although she is good, it has made me happy I did not find a live in.   For me - and we are all different - I find adding another personality in addition to the challenges my wife's disease presents too much to deal with.   I am retired so I am home a lot.  If I worked at the time the caregiver was here that would be different.  

In the end, we are selling our home and I am moving into an IL/AL/MC with my wife in an AL apartment and I in a IL apartment.   It was a hard decision and we have not actually moved yet, but it feels like the best answer for us.  We have no family support and I worry for my wife if I become disabled or die, as she cannot fend for herself.  This way her long term security is built in.  

One other point.  It is expensive.  However to really know what it costs, requires taking into account all the expenses of taxes, maintenance, food, insurance etc that come with home ownership and are eliminated in IL.  As well if you have a significant amount of home equity by selling it might be more financially feasible for you to pay for both of you than keep the house and pay for one.  It is all math and situations can vary a lot. 

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Jo C.

Hello T., it appears from your writing that it is time for much needed assistance with the care needs and I can see that you are giving this much thought.  When you are searching for information re Medi-Cal or are receiving information from anyone else, be SURE that the information is for year 2022. That will make a huge difference as the laws re Medi-Cal are changing for the better.

The most important thing to understand is  that a "Care Partner," really is your employee.  There is no way that simply providing room and board will be reimbursement for all that is involved in such a situation, so you will in all probability need to pay wages as well as room and board in order to have this done properly, consistently, and have it be sustainable.. One also needs to also be in compliance with the tax laws re employees.

The one thing I did notice is that you are in California. If you have not done so yet, do take a good look at the new 2022 Medi-Cal Changes for Long Term Care criteria. They are more generous as of this July, and in January 2024, there will be NO asset counting for criteria at all. None.  As of now, the amount of savings a couple can have when one person is applying for Medi-Cal Long Term Care Benefits is as follows:

$130,000 for the applicant AND $195,000 for a couple. ( Couple can be married or domestic partners.)   Also, in California, it is my understanding that if you have a Trust, even a Revocable Trust and have placed your assets including your home in the Trust; that will protect all assets in said Trust from Medi-Cal being able to access it for criteria counting or recovery - even after your own death.  Your heirs will have everything intact that was in the Trust. You can discuss this with a Certified Elder Care Attorney to ensure accuracy. Anything that does not have to go into Probate is not counted.

Also, any income you have in your name only, will be safe as it is not counted in Medi-Cal criteria for assets.  The California "look-back period" is only 30 months. 

I would like to suggest that you contact the Family Care Alliance in San Francisco where you live. They have an awesome amount of support and many references for care needs in your area.  They also have a terrific online newsletter that brings much information and updates regarding many different topics related to dementia and caregiving. Here are their contacts:

https://www.caregiver.org/  Their contact phone number:  (800) 445-8106.

Also, in California, there is CANHR, it is a group that follows legal issues for seniors re Medicare and Medi-Cal; they are up to date, and are supportive in lobbying for seniors; most of those doing the hard work are attorneys. There is a wealth of information on their site:

http://www.canhr.org/

The strugging to try and maintain a 24 hour care person for some has not been a problem; for others it has been fraught with multiple issues. It  can come with pitfalls and tax ramifications as well as someone refusing to leave your home if you need for them to go if they are not your employee; they can bring legal claim with all the rights a renter has with need for legal eviction and all that entails if they are not an actual employee and that is best done in writing and personally, I would consult a CELA if I were going to do this in order to protect myself from legal hassles.

Keep on with your research, you will soon gain a lot of knowledge that will be helpful in making your decision and still be able to keep your home that you so love.

Let us know how you are doing, we send best wishes and we will be thinking of you.

J.

T. Slothrop

Thanks Jo! Very helpful!