Again thank you all for your wisdom and suggestions for my situation. I think it was unanimous that I need to be out of this situation.
My questions to those of you who are keeping your spouses at home for care would be: 1) Do you do it out of loyalty and love for the spouse? 2) Is it impossible to place them in a Memory Care or Nursing Facility if they don't agree? 3) Will the doctors not agree to have them placed when it is a health hardship for the at home spouse or the spouse is not strong enough to bathe, dress, toilet assist them? Or if they will not cooperate with the spouse in following doctor's orders? 4) Is it the financial cost that would leave the "at home" spouse with nothing to live on? 5) Is there some kind of law that says spouses have to sacrifice their lives to keep them at home? 6) If there is not private money to pay for their care, will Medicaid not agree to pay for care until they reach a certain point?
I only catnap at night so I have read many, many of the discussions on the Board and I can't believe what some of you are doing and going through to keep them at home.
1) I do it because I really have not choice. As soon as he is eligible he will be placed. He does not want me to 'kill' myself caring for him like his mother did caring for his dad. 2) Usually you can not but each state varies as to when you can/can't 3) Usually the doctors have no say in you placing them but they can make recommendations to place for the caregivers well being. 4) If you go Medicaid they will leave you enough to live on - barely. Others that have been through it can tell you more - I am not there yet. Also if you advance search Medicaid you can find a lot of the info. 5) No law I can think of but it seems our government often thinks this way 6) Medicaid will pay if you qualify financially. Someone like an attorney that specializes in Medicaid or social worker can tell you more.
I know we will qualify for Medicaid because we live on SS and have no real assets. I am not one of those heroic caregivers. I hate doing it and as I said have no intentions of doing it longer than I have to. Problem is - when is that time? Medicaid will decide most likely not me when they will approve him.
I do love my DH. I would love to say I keep him at home for that reason. He is at home now because he is still to aware of the situation. I do not want to have to go a legal route to place him. Waiting until he is not sure of who I am and when I physically cannot do it. We have LTC so it is not the money. I do not enjoy my life right now. I feel that I am in a box doing nothing. I would love to go back to work. I do not know of a law that says we have to do this. If you stay married to them and keep them at home, I am pretty sure you are responsible for them as a child. It is a long road. I think most of us go in with the thought that we can handle it until they are so bad off. But, that is not always true. It takes a lot mentally and physically to do this. I am tired everyday.
I placed my husband almost a year ago. He was "not that bad" as most people thought. However I was a basket case and felt like I was bring suffocated. I took a vacation last summer and put him in respite for 5 days. I got a call while I was gone and long story. Short my kids agreed it was time. To this day he is pretty aware and still knows me. He did not resist and I was up front with him saying I just could not do it anymore. I have been told that if they refuse one has to get guardianship but I am not positive. I went the Medicaid route and spent my money on funerals and paying down my house. I have enough to live on and continue to,work from home. I am 67. Now that I have placed him things are better. I no longer have the 24/7 care and can be much more kind and understanding when I do visit. I think everyone has a point when they know it is time for them to be placed. I admire people who can do it longer than I did. I hated giving up my money and going through Medicaid but for me it has been a godsend. I would be happy to share any specific questions you might have about Medicaid if I can. I had a financial advisor and an attorney but it was well worth the money. I realize now after having spent all the money that I really do not need that much to live on. I live pretty simply. I believe it is so important to learn to live alone. I have a friend in one of my support groups who lost his wife 3 years ago and he is still attending grief groups. He told me that almost everyone there says "I do not know how to live alone." That may very well be one the hardest things to face in placing them and may be why we hold on far longer than is healthy. Just my opinion.
I placed my husband in a nursing home when he needed assistance with every transfer and two people to help him up when he fell. He is still fairly aware and agreed to go because it was probably his only chance to get a single room--one happened to be available. A week before he agreed to go in, he said, "anything but that." Once he got there, he started saying it was where he needed to be.
I did some planning for Medicaid and am protecting as much as I can in my retirement account (which does not count in my state, though it does in some). My other money (mostly inherited) will last for 4 or 5 years before I have spent down to the $100,000 or so plus a house and car that Medicaid allows you to keep in assets, so it probably won't come to that.
I have guardianship for my developmentally disabled sister. I didn't find it a horrible process, but even with guardianship the rules for putting someone in a nursing home are complicated. The place I would start is with the social worker of a nearby nursing home or assisted living. That person should be able to tell you how it works in practice and walk you through the process. For my husband, the unexpected delay was that he needed a TB test before he went in. There actually is an instant TB test, I learned later, but they assumed we would do the one that takes several days.
Spouses do have to sacrifice their money, by law, anything above what Medicaid allows you to keep. But nothing requires you to sacrifice your life. That isn't the kind of marriage I signed up for.
I am brand new to this site and my husband passed just recently. Let me try to answer your questions since I was his caretaker.
1) Do you do it out of loyalty and love for the spouse? it started with love but the strain will get to you as the disease progresses. then loyalty sets in
2) Is it impossible to place them in a Memory Care or Nursing Facility if they don't agree? yes but they extremely expensive
3) Will the doctors not agree to have them placed when it is a health hardship for the at home spouse or the spouse is not strong enough to bathe, dress, toilet assist them? Or if they will not cooperate with the spouse in following doctor's orders? that's a very hard question but a doctor will probably suggest in home health care first 4) Is it the financial cost that would leave the "at home" spouse with nothing to live on? Medicaid makes it hard and they have plenty of rules 5) Is there some kind of law that says spouses have to sacrifice their lives to keep them at home? No and trust me it will take a tow on you 6) If there is not private money to pay for their care, will Medicaid not agree to pay for care until they reach a certain point? no
My DH passed away in July after five years of full time care at home. He was in a memory care facility for 10 days but we soon figured out it would not work for him. We hired our own caregivers, at first through Craig's list and later by word of mouth, as using an agency is too expensive. For the last 3+ years he had the same four caregivers, 18 hours a day. They became part of my family. I am very happy we were able to pull this off as I think it was good for him as well as me and my family. It cost a lot but not more than a reputable nursing home would have cost. All caregiving expenses were a tax write off.
Two weeks ago I had my DH placed in a Memory Care Facility. My answers are as follows:
1) Do you do it out of loyalty and love for the spouse? I kept him home for years mostly because - 1) I was still under the impression that all facilities were still like the horror places from years ago, 2) I felt I could handle it at home... until it was obvious I couldn't, 3) I felt the no one else could care for him the way I could, since I was/am the one who loved/loves him the most, 4) not loyalty as much as a sense of duty for me. Sickness and in health...
2) Is it impossible to place them in a Memory Care or Nursing Facility if they don't agree? Once Bill made me his legal Healthcare Advocate/Representative, the decision was up to me, not him.
3) Will the doctors not agree to have them placed when it is a health hardship for the at home spouse or the spouse is not strong enough to bathe, dress, toilet assist them? Or if they will not cooperate with the spouse in following doctor's orders? Bill's doctor was in full agreement when I mentioned I was thinking of having him placed. His actual comment was: " I think, no, I know you are making the best decision for the both of you."
4) Is it the financial cost that would leave the "at home" spouse with nothing to live on? I am not that familiar with Medicaid, other than years ago my mom had to go on it in order to go to a SNF. She pre-paid for her funeral costs and paid down her mortgage to qualify. Bill and I do not qualify.
5) Is there some kind of law that says spouses have to sacrifice their lives to keep them at home? Its not a 'legal' law, but it is the law of this disease. The further into this disease they go, the more dependent they become on the caregiver spouse. Before you know it, caring for them consumes your entire life. Not to mention the physical burden. The final straw for me was when Bill fell out of bed twice in one night and I couldn't lift him up. He was dead weight on the floor and I just sat next to him crying. I have a history of back problems (herniated disc) and I got to where I couldn't move neither. Finally got him in bed after calling my brother over. I knew then, I had to have him placed.
6) If there is not private money to pay for their care, will Medicaid not agree to pay for care until they reach a certain point? Again, I am not familiar with Medicaid. My impression is that many facilities accept Medicaid patients, but there is usually a waiting list. I do not know what the criteria is that makes a person qualified. I am very fortunate that Bill's monthly pension and social security cover the cost of the facility. Since I work full time, I live on my salary. Its hard, but doable.
I haven't gone through Medicaid but have talked to a lawyer about it and have had many discussion with those on it.
Medicaid varies by state and changes every year. You need an Eldercare Lawyer to prepare for it. This should be done well before you need it due to the 5 year look back.
Medicaid has requirements for placement into a nursing home, just as private LTC insurance has requirements before it will pay. Normally Medicaid pays only for NH care but I know of cases where it pays for ALF (varies by state). I found out in Virginia long term care Medicaid will pay for ALF medical care but not for room and board.
As a general rule long term care Medicaid has provisions for the well spouse. You may keep $X, the house the well spouse lives in (some states will put a lien on the house, others don't) and a car. I have no idea how decisions are made about how much of private income must go to help pay for LTC. Rather then spend down your money to the point will Medicaid will pay you can take any extra money and use it to pay down your mortgage, make house repairs/improvements and/or buy a new car, all legal. While the loss of savings and retirement accounts is a blow these other provisions soften the blow. I believe that if there is an annuity only in the name of the well spouse Medicaid will not touch that money. In the 5 year loopback there are allowable and unallowable expenses. For example, education is an unallowable expense and will be deducted from the amount of money the well spouse may keep.
There is no law that says spouse must sacrifice their lives. The State (by State I mean any country, seems to be universal) will do enough to keep the well spouse going, such as short term respite. But no more. The State wants the well spouse taking care of the sick one at home.
If the above seems confusing then you need an Eldercar lawyer. This is a very specialized legal field.
As to doctors, it will vary. The good doctors worry about their patient and the well spouse.
One thing that I never thought about, but came up when I placed my wife in her current ALF, is to have 2 doctors certify that my wife was incompetent to make health and financial decisions. It might be handy to have this done now, and it is better if one of the doctors certifies this within 2 hours after examining your husband (there was a checkmark for this on the form I gave to my wife's doctors). I was surprised how quick they were to sign this form.
For me we have to depend on Medicaid (unless I win the lottery!!) and doctors. It will not come soon enough for me. Even though he is not bad yet, I am tired of my life being on hold.
Another reason for placement could be safety. My FIL and SIL were both 'runners'. My husband exhibits the same behavior except so far he is good about limiting his walking to in the confines of the RV park. He is well aware of his dad and sister's behavior and promises he won't but I know it could happen at any time.
I have not really looked into just what is said here. I need to as we get closer. Either fortunately or unfortunately - whichever way you want to look at it - we do not own much. We own our motorhome we live in and our car - nothing of real value. We live on his Social Security.
The advice here on Medicaid is good. I went through it and live in ohio. I have a lot less $ than when I started but am not destitute and do have a little job where I work from home. My expenses are a lot less having him out of the house and my condo will be paid off in a bout a year. My husband is in a memory care unit within an assisted living facility. Medicaid is paying. I was on a wait list for 9 months. Here in Ohio one can count on one hand the number of facilities that have Medicaid beds that are available for assisted living. That is why in my opinion if one is contemplating placement at some time in the future and are considering Medicaid that you get on a wait list. By the time the bed becomes available your spouse will be ready. I know that was the case with me. Here they generally stay in assisted living until hospice is required because the cost is considerably less than a nursing home. My husband is physically stable now and is not agitated so this is the best place. Most of the people on his unit are ambulatory. Some are more verbal than others.
Right now I'm waiting for Medicaid approval. Our application was filed in June and I understand it has been reviewed, but the decision is still pending. I did place my DH on a waiting list for a Medicaid supportive living facility specifically for dementia, but the wait will probably be up to two years. Unfortunately our state only has five such facilities and the waiting lists are long. The only other alternative is a nursing home or home care. Medicaid does not really cover home care, but the costs can be used to meet a spenddown to eventually qualify for the nursing home.
My DH is not ready for a nursing home and sadly has not done well in a day program. I was quite disappointed when I had to withdraw him from the day program a few weeks ago. He just couldn't tolerate the noise level and consequently wanted to walk into other areas of the facility. He needed too much monitoring and they didn't have the staff to accommodate him. Sadly, he was receiving funding for that day program and now we've lost it. I've also found that adult day care programs are not a "one size fits all" situation. Even the program my husband was attending, which was dementia specific, couldn't meet his needs.
I'm already under the Spousal Impoverishment limit for cash and accounts, but it looks like I'll be spending a lot of what has been allocated for me just to take care of my husband. I still have the house which has been paid off and the car, which still has a loan on it.
I would say that I have reached my limit of endurance in caring for my husband, but have no where else to turn. I'm stuck and I need to hire someone to come in and give me a break.
All in all, dementia care is a difficult situation.