What do we need to do to protect ourselves if my husband or I quit a full time job to be a caregiver?

You wrote that your family won't provide help (with caring?) but they would pay you for your services. Do you have a caregiver contract drawn up or under negotiation? Does the family have the funds to pay you? If your family doesn't help with care, I hope you're confident and have evidence that someone in the family will pay you; otherwise you're taking quite a gamble.

Will the person who continues to work add the stay at home caregiver to his/her medical coverage so that he/she still has medical insurance? Who will provide care when you need assistance, or just to get out for relief?

To cover all bases, think about when you might need additional in home help and who will pay for it. Think about how confining it will be for whoever quits his/her job and stays home full time to be the caregiver. Think about when your grandfather declines and needs more help. Think about when you'll feel trapped and tied down. Think about the funds and benefits you'll lose - are you prepared to sacrifice them, and can the other partner support you if you do?

And read posts from other caregivers who've quit work to be fulltime caregivers - consider their dilemmas and dissatisfaction, and ensure that you're prepared for it.

When GF's funds do run out, what do you plan then?

Here are some things to think about if one is trying to decide whether to quit work to care for an aging parent.... on average if a working person quits work he/she will lose, over the years, between $285,000 and $325,000 which includes not only loss of salary over those years... it also includes the net worth loss of the health insurance coverage.... loss of money being put into Social Security/Medicare..... loss of other benefits such as matching 401(k).... profit sharing.... workman's comp insurance.... company sponsored life insurance.... vacation pay, sick pay.... tuition assistance, etc. [source: in part Reuters 5/30/12]

The above is an eye opener and a lot to think above. When you add up ALL the funds you would lose, what you pay someone to be a caregiver doesn't look all that bad. Now, as you know with Dementia it is only going to get worse and you will need 3-shifts of caregivers.

Another thing to think about, what if something happens to you and your hubby, then what? Would family come to the rescue or would Grandfather need to go into a continuing care facility?

My Dad [94] is in a senior living facility and he is happy as a clam there. Yet he came there from a large home which he was glad to get away from, just too much worry at his age. And he's around people closer to his own age.

Have a care agreement drawn up that spells out the compensation amount and what is expected of you for that amount. Do that whether it is family that is paying you or GF. Pay the self-employment taxes on this money. Continue to earn SS credits. (You will be retirement age someday, you know!)

I hope GF is paying something for room and board.

Plan ahead for respite care. Either charge enough to be able to save some to pay for respite out of that, or specify who/how respite is going to be provided. Even without working another job you cannot provide 3 shifts of care 24/7/365 without vacations and breaks and remain sane. Can't be done. So build that right in to your plans.

If GF runs out of money, he can apply for Medicaid for in-home care, or, if it is necessary, nursing home care. That is one reason it is essential that monetary arrangements be put in contract form. Medicaid does not expect applicants to have been living on nothing. Room and Board and Care payments are perfectly legitimate expenses. But gifting could disqualify him. So make it clear that the money you are getting from him is NOT a gift.

If family is really willing to pay for GF's care, would it be better to hire an outsider and keep your own jobs? If one of you can work from home, then GF will continue to have your reassuring presence even when the care needs are being provided by the hired person. I'm thinking that since this is your GF and not your parent you may still have a long working life ahead of you, and perhaps not interrupting your career might have some value. If one of you does stop working for a few years, think ahead about how you'll stay current enough to reenter the job market later.

GF has been with you 8 years already. You've seen the decline and presumably know what you are getting into. If you treat the money you get for this as an income from working, and you are careful to cover health insurance, arrange for vacations, and if the income is at least what "hired" help would charge, then perhaps this could work.

I caution you, however, that declaring that " a nursing home is not an option" is just not realistic. You know what the situation is like now, but you do not know what the future holds. Dementia very often ends up where three shifts of care are needed -- and it is care that is nearly impossible to provide in a private home, whether you are working an outside job or not. So hope for the best -- that GF can live out is life in your home, perhaps with hospice care at the end -- but keep an open mind about options in case the best does not transpire.

Thank you for the advice. I'm concerned about his money lasting in any situation and am trying to come up with the scenario that will make it last longest. I should have clarified Grandfather would pay for his own care whether its a caregiver, nursing home, etc. my family's advice has always been to put him in a nursing home. I do realize that as his condition worsens it may become necessary. At this stage, I don't feel that it is . I know many people thrive in nursing homes but he has never been very social. I think getting part time help at this point is necessary and we can decide as he declines what the next step will be. my husband is the one that is considering leaving his job so that he can be full time caregiver while I continue to work from home. this we have a school age child and I believe our financial security must come first. I've crunched numbers and honestly at most grandpa could afford to pay him or a full time caregiver for approximately 3 years. there is a very real possibility that he could outlive his money. at which point we would need to come up with another option. we will cross this bridge when we come to it.

No, you are too young to quit working. The payment you get will never replace a full time job. You won't have good options for returning to work. Talk to people who have done this and lived to regret it.

newtoy, I hope others on this forum who have tired to work from home will chime in.... they will tell you it doesn't work very well.

By the way, how old is your grandfather? To someone in their 30's, a person who is 60 is elderly. Just trying to put a gage here as to what would be his time line. My parents lived into their mid-to-late 90's. Would your hubby want to be out of work for maybe a decade or more? That would create a financial havoc that would be hard to fix.

P.S. Don't wait until you are in front of that bridge to come up with another option, start thinking now.

Right now Grandpa is easy to work with for one caregiver, but tomorrow might bring something entirely new to deal with, and one caregiver even with you helping can become exhausting. Before you know it, you both are doing the work for 3 full-time caregivers each day. These are things you need to plan for in the future.

If you see that Grandpa is starting to run out of money for care, quickly get him to apply for Medicaid by calling your State Medicaid office to see what rules, regulations and program they offer [each State is different]. Medicaid will pay for full time care in a nursing home and play for the cost of the nursing home.

As a person who has (and still does on a smaller scale) worked from home, I will chime in, as FF suggests.

It was the perfect solution for me. I am highly disciplined (in some things!) and kept very careful track of the time I worked. I was doing things I knew how to do and had had a lot of experience in while working in a traditional setting. I will say that it always took me 7 days to get in 40 hours and that I was never really "off" work, but the flexibility in hours allowed me to keep my husband at home while I supported us. My employer was very satisfied with the quality and timeliness of my work.

Working from home is a very sensible, practical option for many people, whether or not they also have caregiving duties. It is not for everyone!

For a few years my husband went out to a day program for a few hours. That was when I scheduled work meetings and also my own appointments. Later we had a PCA who saw to his needs while I worked in my home office.

The fact that the poster here is considering one person working from home and the other being the caregiver is MUCH more feasible than one person working from home and also being the primary caregiver.

There are a lot of risks in the plan to keep GF at home. But I don't see the "working from home" aspect as being a particularly risky part. It can be a very satisfying and practical approach.

I really appreciate everyone helpful answers and advice. Freqflyer Grandfather is 95. at this point he still has good days and we can manage. its becoming more difficult so I think if we had a caregiver come in while I work it would be easier. I have spoken with nursing homes and caretakers and checked out our states Medicaid laws. it does not appear that he qualifies based on his savings and monthly SS and pension payments but on the other hand the amount he brings in certainly doesn't pay for full time care. Which is what promted the discussion of one of us quitting. we see the challenges that it will bring both emotionally and financially and we would definitely have a care plan agreement drawn up to protect ourselves.
Jeannegibbs its nice to hear from someone who has been in a similar work from home situation and made it work. I am also highly disciplined which is why I know my work cannot continue to be interuped as much as it has.i think I'm harder on myself than my boss is. I am arranging for a part time caretaker for the busier part of his day while I work from home and for some evenings that we have things to do with our child. we are hopeful that he can live out his days at home but I think we are preparing for the future.

newtoy, from your profile it says that your Grandfather has Alzheimer's/Dementia and that can change from one phase to another overnight. That is something to think about down the road.

I wish more would write about trying to work from home. Guess it depends on the type of work, if you needed to speak with Clients through-out the day, or be on conference calls. I remember one writer here who had to quit working from home because her Mom would be banging at the door and/or yelling at times when the writer was on the phone with clients.

My son also worked from home extensively while he was recovering from an accident. It scarcely mattered -- all of the people he needed to have contact with were scattered all over the country and none where in his local building. Didn't matter to them whether he was in the official headquarters or in his convalescent sun porch!

I don't think I could have worked effectively from home and also raised children -- unless I had a child-care person there also. And, yes there were some interruptions from my husband, but it was not a deal breaker. The poster here already has experience with working from home, so they both should realize what they are getting into.

More than 20% of the US working population works from home at least one day a week. This helps reduce the wear and tear on roads, the pollution from automobiles, investment in "work" wardrobes, and has lots of other benefits. But it may increase to cost of heating and cooling homes (for longer periods each day), can cause feelings of isolation, and create problems when communication isn't clear.

It is an increasing trend, quite aside from the caregiving issue. If you are a caregiver, and you have to earn a living, and you have skills/knowledge/experience that can be deployed via computer from your home, it is an option to consider seriously.

Is it for everyone? Absolutely not. Will it work in all situations? Certainly not. But it is a good option for many.

Jeanne, your observations on the increasing number of people working from home is a very appropriate one, especially in the context of people attempting to blend this with caregiving. Tgengine has tried this; I recall there are others here who have as well.

Who knows - that work from home trend may actually in the long run make in home caregiving more feasible.

I remember when the concept of a day care in corporate HQs was unheard of. Now it's a perk.

Have you considered hospice/palliative care? My mother is 97. I just started her on this kind of care. Because of her age and her limited mobility she qualified and Medicare pays for it. If you contact your local Area Agency on Aging, they can give you a list of companies serving your area. Had I know about it sooner, I would have had both my parents under this kind of care.

I will check on that. We discussed with Dr and she didn't think he would qualify since he isn't "end stage" for any of his ailments. He has home health care coming out so I will discuss that with his social worker or nurse next time they come out. thank you for the advice GrandmaLynn. Jeanne and Gardenartist. I have been working from home for almost 2 years and there have been some struggles but overall it has worked well. I think working from home is a great option for people who can manage it. Its much easier for me to be here even with a caregiver than to be worried about what is happening from the office.However, I agree you can get burned out if you don't take a break. My Breaks and lunches are spent tending to grandfather, walking dogs, doing laundry, etc. so there is no down time. I am working on getting some help so I don't burn out.

I suggest you reconsider the nursing home option. Or the memory care unit in an assisted living facility. Whatever fits. I visit my spouse in a memory care facility. Most of the people do not socialize, even when they are in the open area, and some stay in their rooms and come out only at meal time.