How do you decide on nursing home or home care?

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We are facing a very challenging situation. We discovered my Father had brain cancer in December. He was scheduled for open heart surgery in January to repair a valve and anyuerism. Both major surgeries were scheduled 18 days apart. He has been through alot physically. Currently he is in rehab but making very minimal progress. He has mental status changes and has not been ambulatory. Prior to these surgeries he was living independently and driving. Furthermore, we learned the brain cancer is incurable and he has 6-18 months to live with treatment. We have not received clear treatment options from the oncology staff due to some other complications and we are waiting to hear the recommended plan.

I met with social work yesterday; they are preparing me to look for a nursing home in which to place him. We are grieving because the changes have happenned so quickly. He is only 66 years old and was independent up to this point. He is currently not ambulatory and has had a catheter in place for two weeks. We have a family meeting with social work in two weeks to assess his progress and care.

My heart is sad and I'm concerned he would lose his home if we place him in a nursing home but I'm not sure if we could care for him adequately ourselves with outside home care help. Any advice or direction would be appreciated?

Thank you.

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The key is being "resourceful" and finding ways to afford the care of your loved ones-"If there is a Will, There is a Way"-- In our case (arose4yu is my sister) , we found a wonderful live-in care giver through referrals and recommendations by special friends (in addition to ourselves as their caregivers & nurses) ; also please do not hesitate to get in touch with your friends; your local church, organizations, fraternities or any foundations you belong that may direct you to the right resource(s) or assistance.... There are people out there who are willing to volunteer, are caring, compassionate and are willing to volunteer their time;...The key is asking and spreading the word out there that you need assistance....
It was our great love for our parents that fueled our determination to be their advocate and eventhough it was a difficult decision to cut our work hours, we volunteer our time to be their caregiver and found ways to make ends meet; in the end, we know that we feel fulfilled and know that we have given everything we have for the sake of our love for them... We feel blessed and fulfilled.... Even if you have the hospice or a nursing facility as your option, the key is to make sure that you are always there for your father and be this patient advocate to the end....Go with your heart always and be resourceful... You never know until you ask and try all the resources available to you.... Good luck & hope that things will work out for you...Blessings & Light to you and your family....
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good job Igoo, I didn't know what a Miller Trust was until you explained it so well. Thanks
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OK sound like you will need to go the facility route.

Most NH & REHAB admissions come from a hospital discharge. If an individual covered by MediCARE is discharge from a hospital to a nursing home for continued care (rehabilitation) after an inpatient stay of at least 3 days, MediCARE will cover 100% of the first 20 days and MAY pay up to 100 days, subject to a co-payment by the patient of $141.50 per day for days 21 to 100 (for 2011). Medicare does not pay for the many months/years that some people reside in a NH for long-term custodial care. In general, Medicare is limited to short-term acute care.
But this MediCARE paid period of time in the NH is when you need to get the documents together to apply for MedicAID.

Medicaid rules determined by each state & are state specific even though it is a federal & state program. Medicaid is needs-based.

For NH Medicaid eligibility, an individual must show that:
1) are 65+,
2) medical condition requires that level of Nursing care,
3) monthly income less than their states max (about 2K),
This is the “income test” – how much $ do you make.
4) countable assets are less than 2K
This is the “asset test” – how much $ do you own.
5) not gifted away anything of value during the look-back period.

If you do, there could be a “transfer penalty” when items are gifted below value. Penalty different for each state as it’s based on state’s NH reimbursement rate.

Eligibility $$$ are totally different if there is a community spouse.
The max look-back is 5 yrs. Most states require 3 – 6 mo. of financials with Medicaid application. Can require more financials if something pique’s interest.

INCOME: If it is that every month they are over the states income limit BUT not enough to pay in full for the NH and qualifies for NH in every other way, then they can see an elder care attorney to do a "Miller Trust" or a "Special Needs Trust". Say dad gets 1K from SS & 1,500K from retirement every mo. Income is $2,500. Basically $ 500 over state's ceiling for monthly income. No matter what is always is $500 over. So this excess $ 500 is what funds the trust and therefore dad’s income is now 2K and within the states income ceiling. The beneficiary of the trust is state's Medicaid program and upon death reverts to the state. Miller really has to be done by an attorney who does elder law as it needs to be flexible/adaptable and meet the criteria of each state's law on probate (death laws) & Medicaid rules.

ASSETS: All assets are counted, unless the assets fall within the short list of "noncountable" assets:
- personal possessions,
- a vehicle,
- their principal residence, provided it is in the same state in which the individual is applying for coverage & the house may be kept with no equity limit if the "community spouse" lives there; otherwise the equity limit is 500K (750K in some states)
- prepaid funeral plans (irrevocable, no cash value/NCV)
- small amount of life insurance (usually $1,500 & NCV)
All other assets (savings, stocks, whole life, rental property) are counted.Must “spend down” to get to their states Medicaid asset max to qualify.

Depending on the real estate market in dad's area and your ability to do even more, you might not try to deal with selling the house. If it's paid for and homesteaded then the cost to maintain is low and you & your DH pay whatever it is and then deal with the house later on. My mom is in a NH on Medicaid and still has her home which I & another family member pay the whatever's on. For us it's manageable, and my mom has great neighbors who look out, collect mail, etc for her property and call me when something happens, like a tree taking a hole in the garage roof but each situation is unique. Oh I keep records on all $ spent and will eventually seek reimbursement from her estate. Good luck.
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My wonderful Aunt just passed before Christmas with lung cancer, non-smoker. She had survived for many years but it finally took her. She was only 67 years old. My dear Uncle had hospice come into the home and do what they could. Igloo is correct about you having to pay Room and Board in Nursing Homes for Hospice patients and that is only if they accept the patient at all.

My Uncle told me never would put my Aunt in a nursing home, until he had to care for her. His opinion changed, it was very hard. She never went to a NH but stayed at home until the end but my Uncle and cousins were all with her constantly. They are exceptional people. No wimps, but my uncle said he would never judge anyone again about making the nursing home choice. He understood. I think most people would.

I am sorry for you, I lost my Dad four years ago today. It is hard.
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Thank you for your input. I do have DPOA. My Dad is also a Veteran and I'm trying to learn about those benefits and if they can assist. Much appreciated!
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66 is so young. This is just so difficult and so many decisions so quickly isn't it?
These situations are especially hard because the change is dramatic.

My suggestion are:
1. Talk with both disease specialists to see which one would be best to lead what his care plan needs to be. In other words, brain cancer care first and foremost or cardiac care.
2. Ask them frankly what hospice would be like for him. He is terminal so hospice placement will be approved. Now hospice can be done at home OR in a facility.
Hospice (service, medication and staffing) is covered under Medicare. BUT if he is in a facility, the room & board part of his expenses are not cover by Medicare. So you have to budget for that which is either private pay, LTC insurance or Medicaid.

If you choose hospice care, the issue is who is going to be there 24/7 for the care that hospice cannot do. That is something only you and your family can decide. If you all cannot put your life on hold for the next few months or year to do 24/7 care, then a long term care facility with skilled nursing is probably best.

We have been through hospice with my MIL and they were wonderful. Her's was post surgery complications and congestive heart disease. VITAS and Compassus are large hospice groups. Some hospice also have a free standing facility for the patient to transfer to when it really is at the end of the hunt.

One thing is that depending on his needs some NH will not take him. Some won't accept coma patients, so please ask his care team what is likely to happen as you do not want to get a "30 Day" notice to move in March to have to move him and have to go through all this all over again.

3. About loosing his home. NH average about 5K a month but your dad may need to be in a speciality unit and that could be more. Really you will have a better idea once the care plan meeting happens. At this point you really can't do any advance planning as the need is "now". His assets will need to be spent on his care.

If you can go through his paperwork to get a good financial picture of what his income and assets are. If he has assets, then it will need to be spent down before he can be placed Medicaid Pending. If he is a Vet there are programs for him. I'm not familiar with those but there are folks on this site who are.

Hopefully someone in the family has a DPOA, MPOA?
If you don't, and your family is truly all on the same page, then have a family meeting to determine who in the family is the point person for all things dad. If some of your siblings live away and have not seen him, then they really need to go to see him to get a reality check. The goal really should be "what is best for dad". Make it your mantra. Good luck

PS I don't mean to be harsh so please don't take it that way. Just real.
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I will call our local department of aging today and see what resources we can avail ourselves. thank you for your input.
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I'm married and work part time. My husband would help me--but he works as well. We are in our 40s and are not in a financial position to quit our jobs. We have no other family. I know my Father would want to be home. I'm intimidated because he is not a little man or frail man--and the brain tumor has already affected his cognition and reality and I'm not sure if we could keep him safe.
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Trying not to sound too general because I know each situation is different. I just know that given the choice, most would want to spend their remaining days at home surrounded by family. I also wanted to throw in that there are also better alternatives such as: board and care homes.
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What is your situation with work? family? As someone who recently lost a mother to Alzheimer's, and currently caring for a critically ill father I can tell you that their quality of life is better at home if it's possible. The keyword: QUALITY OF LIFE. I don't know your financial situation or his. But it sounds like he has limited time. Social Workers are there as a resource, but that's it. You have to sit down with your family and father to discuss what YOU should decide on and then go on from there. Is your father capable making decisions? What does HE want? Sometimes, we as children have to put ourselves in their situation if they can't make decisions for themselves. I'm not saying that a nursing home is out of the question. For some people, it is impossible to care for their loved ones at home and if this is the case, make sure you are there as much as possible, monitoring the staff, monitoring his needs. In my opinion, there are other options. Keep him at home either with hospice care ( I don't like hospice myself- bad experience but it can be good for others), transitioned care (this is something you will have to see is available with his medical insurance/group/clinic), or outside caregivers. You don't have to go with an expensive agency either. There should be a non=profit nearby that can help you with the resources you need: mobile physicians, transportation, caregiving, food delivery. Look at the U.S. Dept of Aging to find out what's in your state or look in the white pages. We had two parents at the same time: both were bed-ridden with many problems. Dad is currently bed-ridden with Congestive Heart Failure/COPD and now we have my sister's mother-in-law who has Alzheimers. It is a challenge I know...more challenging that anything you could possibly imagine aside from an ill-child. Just know there are ways.
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