What do I do when I feel I can't do it anymore. Weekend was horrible, husband fell and had to go to ER. Nothing broken. Have not had but a couple of hours sleep each night for a week. He paces, he eats, he smokes, he does not sleep. I work all day, stay up half the night and it still is not enough. Each day placing him sounds better and better but I could not live with the guilt if I did place him, in fact I could not live at all if I place him because when he goes to placement his income goes with him and I don't make enough to live on. I feel like a dog chasing its tail, running in circles and not getting anywhere.
Oh, my dear, it will get better. It comes in waves. Talk to the doctor to get him meds to knock him OUT at night (even if it's not "safe" for him). And his income does NOT all go with him - the spouse gets enough to live on, at least theoretically, out of it. Sunshyne or Jane will be along to tell you how much that is. And call the AZ association and ask for them for names of caregivers - who stays with him in the daytime?
My heart goes out to you big time! I am walking in your same shoes and have little to be able to give you but my support, knowing others face this same situation may give you a sense of not being alone in this. You are not alone.
There is something called the impoverished spouse laws. Don't know if it is state or federal, but I will soon be needing to look into it. Maybe someone on the board knows more than I, but it is designed to ensure the community spouse has access to some of the placed spouses income.
He is on Medicade and I have caregivers from 8:00 am. until 5:00 p.m. Monday thru Friday. They are a God send and I love them both but right now I just feel overwhelmed and don't know where to turn.
You are at a point where I dread. I haven't worked a full time job since before my kids were born -- 26 years. I have worked part time at home but that income as dropped to almost nothing due to the economy--I work in recruiting for a specific company and if they aren't hiring I don't get work. My husband is still on short term disability and we are filing for long term and social security soon as his short term runs out in January. I want to work but with the economy and my worrry about leaving my husband alone everyday--even though he is still high functioning with FTD--I'm not sure what to do. Sorry about venting here but I too worry about what I'm going to do if--big if as I don't ever want to place him--I'm going to do about income too.
I feel your pain! Sometimes it's just toooo much for one person to handle. Know that you are not alone. We are here for you. I am working full time too and it is a heavy load. Any way you can get some sleep? I know that is easier said than done, but it makes a huge difference.
my dh is on meds to help him sleep. i know it sounds awful,but i look foward to him going to sleep so i can actually have some time to myself. talk to your dhs dr. and have him to prescribe some sleeping meds and anything that will help. you have to think of your health also. my dh takes trazadone at night along with his other meds to help him sleep. he also takes xanex at night and whenever necessary. he doesn't need to take it often,except at night. i hope you get some relief. this is a terrible journey for us all. may god give you strength. jav
Last week was so intense that I was thinking that I can't do it anymore either. Thankfully we CAN say it here. I'm thankful that my DH does sleep at night, so far. Not sure how I'd get him to take medications for it otherwise. If I couldn't rest day OR night, that would be bad for us both. I hope the financial information shared by others here can help.
I bobble along trying NOT to think about doing the official hunt for a nursing home or etc. Then something dramatic occurs and it causes us all to wonder how long we can keep him here.
Because my DH's retirement is 'over a limit' he'll never qualify for medicaid. He retired from teaching in public school so this is not a huge sum. We are in Texas and that limit may have changed in the last 4 years, I'm not sure.
I guess it would help us all to be better informed and have a plan of some kind in place whether we ever implement it or not. Food for thought this early morning.
Judy, you are so right about how we should all have a plan of some kind in place whether we ever implement it or not. I don't ever want to place my husband but who does? I don't have a plan but I'm thinking and learning. Thank all of you for sharing.
ehamilton this can't go on, you not getting any real rest, I know I tried. We can all say that we can't do it but yes we can because we have to. Think about what would happen if you were the one that got sick who would care for him. That is the most important thing is taking care of you. Oh man would it be so nice if a person came to the door and understands what you are going thru and figures it all our for you. I truly believed in my heart that someone was going to do that for me and all this pain would be in the past and I believed it for weeks. The creditors are calling the nursing home is sending bills everything is business as normal except for me. I want it to go away. I looked at the financial side of this website and Rule #1 get an elder law attorney. Just doing that took a little off me. When the attorney was sitting at the table with me and knowing my situation and finances he was asking some pretty tough questions and decisions that I (no spouse input) had to make by myself. We did not get in this life style overnight and it won't end overnight. Placing your LO in a NH does have guilt attached but even that is conquerable. This is probably the hardest thing you will ever have to do in your life but it can be done. This website and these friends have kept me alive overnight to greet a new day I come back day after day and I read and re read. When I thought I was at my lowest I said WHOA girl that is not the answer, but do I think it sometimes when all this has become so overwhelming. You bet I do. Hence anti depressants and therapy. Call the 800 numbers in the middle of the night they do understand and what nice soothing calming voices they have. Please remember: We are not alone ever. We are all behind you. Do we make mistakes yes but we can learn from them and keep going that also can be a yes.
You are right, Judy.......Isn't it amazing how little money can put us over the limit for assistance? My husband was DXd at 60....too early for retirement and with a son in college.........However, his SSD puts him over the poverty limit (14,000/yr), making it so that we don't qualify for ANYTHING. Credit cards are maxed, savings are depleted........What a monster of a disease!
I often wonder why don't we, as caregivers, give up? There must be SOME reason!
We're in the same boat - we don't qualify for anything either - not even the VA aid and dependence and he was in the war. But we keep on going, don't we? Why??? Because we CARE and LOVE.
Jane is the expert on Medicaid ... I just google. :-)
You should talk with an elder care attorney. The laws are very complicated, and vary from state to state. You want to be sure that you handle everything correctly ... and with all the stress that you're under, you don't want to try to do it all yourself! It can help a LOT to have an attorney holding your hand and guiding you.
The bottom line is that there is a formula that Medicaid uses to determine how much you are allowed to keep of your husband's income, to be sure that you can continue to live "in the community".
This is a very helpful website:
http://www.elderlawanswers.com
General information that applies in all states is at:
The section that discusses what you can keep says:
*Protections for the Healthy Spouse*
The Medicaid law provides special protections for the spouse of a nursing home resident to make sure she has the minimum support needed to continue to live in the community.
The so-called "spousal protections" work this way: if the Medicaid applicant is married, the countable assets of both the community spouse and the institutionalized spouse are totaled as of the date of "institutionalization," the day on which the ill spouse enters either a hospital or a long-term care facility in which he or she then stays for at least 30 days. (This is sometimes called the "snapshot" date because Medicaid is taking a picture of the couple's assets as of this date.)
In general, the community spouse may keep one half of the couple's total "countable" assets up to a maximum of $104,400 (in 2008). Called the "community spouse resource allowance," this is the most that a state may allow a community spouse to retain without a hearing or a court order. The least that a state may allow a community spouse to retain is $20,880 (in 2008).
Example: If a couple has $100,000 in countable assets on the date the applicant enters a nursing home, he or she will be eligible for Medicaid once the couple's assets have been reduced to a combined figure of $52,000 -- $2,000 for the applicant and $50,000 for the community spouse.
Some states, however, are more generous toward the community spouse. In these states, the community spouse may keep up to $104,400 (in 2008), regardless of whether or not this represents half the couple's assets. Example: If the couple had $60,000 in countable assets on the "snapshot" date, the community spouse could keep the entire amount, instead of being limited to $30,000.
In all circumstances, the income of the community spouse will continue undisturbed; he or she will not have to use his or her income to support the nursing home spouse receiving Medicaid benefits. But what if most of the couple's income is in the name of the institutionalized spouse, and the community spouse's income is not enough to live on? In such cases, the community spouse is entitled to some or all of the monthly income of the institutionalized spouse. How much the community spouse is entitled to depends on what the Medicaid agency determines to be a minimum income level for the community spouse. This figure, known as the minimum monthly maintenance needs allowance or MMMNA, is calculated for each community spouse according to a complicated formula based on his or her housing costs. The MMMNA may range from a low of $1,711 (from July 1, 2007, through June 30, 2008)) to a high of $2,610 a month (in 2008). If the community spouse's own income falls below his or her MMMNA, the shortfall is made up from the nursing home spouse's income.
Example: Mr. and Mrs. Smith have a joint income of $3,000 a month, $1,700 of which is in Mr. Smith's name and $700 is in Mrs. Smith's name. Mr. Smith enters a nursing home and applies for Medicaid. The Medicaid agency determines that Mrs. Smith's MMMNA is $1,700 (based on her housing costs). Since Mrs. Smith's own income is only $700 a month, the Medicaid agency allocates $1,000 of Mr. Smith's income to her support. Since Mr. Smith also may keep a $60 a month personal needs allowance, his obligation to pay the nursing home is only $640 a month ($1,700 - $1,000 - $60 = $640).
In exceptional circumstances, community spouses may seek an increase in their MMMNAs either by appealing to the state Medicaid agency or by obtaining a court order of spousal support.
There's also a bunch of stuff on the new rules for transferring assets, etc. You really, really need an attorney to do this.
Then this same web site lists the rules for a given state. For Pennsylvania, protections for the community spouse, for 2008 (last updated 9/19/2008):
Community Spouse Resource Allowance (CSRA): Minimum: $20,880 Maximum: $104,400
Increased CSRA: Permitted. Pennsylvania does not follow the income-first rule.
Annuities: Institutionalized Medicaid recipients in Pennsylvania with monthly income below $1,809 may now retain $8,000 in total resources; otherwise, the figure is $2,000.
thank goodness for this web-site, everytime I read something I realize that I am not alone and neither are you. I know what it's like to work and not get any sleep. I know longer work now, but at the time I thought I was going to lose my mind. Things will get better, my husband also has to take something to help him sleep at night. Thank goodness for xanex. He sleeps and so do I, finally. Don't give up. You stick it out because you do love your dh we all do other wise none of us would be on this website. Call your doctor as soon as possible. Hang in there.
How does a life insurance policy affect eligibility for Medicaid? I'm the beneficiary on my DH's insurance policy; would that policy count as an asset to him?
Crisis over for now. Thank you all for your input and your support. I cried for a couple of hours last night, threw a few things around the kitchen (broke the handle on my favorite cooking pan), vented here on the site and went to bed to another night of ups and downs. However, I did come home from work early and took a nap while the aide was still here. The neurologist had prescribed Ambien the last time we were there but it does not work for him, it makes him hyper. I put in a call the them yesterday asking for something else. No one called back. I called again at noon today, no one called back. Tonight I have him a Xanax. I take them on occasion myself and know they help me sleep. Maybe they will him also. I also know that I need to make some serious plans for the future and the sooner the better ,even though I truly hope I never have to place him, my state of mind last night tells me that the time may come that I do not have a choice.
Vickie, if the patient is the owner of a life insurance policy that has cash value then it is an asset for Medicaid. If it is just term life insurance then it could not be cashed in so would not be an asset. They are allowed to exclude a small amount of life insurance. They are allowed to have a pre-paid burial plan. The life insurance (if not too large) can be cashed in and used to purchase pre-paid burial plan or (at least in MO) the beneficiary on the life insurance can be changed to the funeral home to fund the burial plan (must be irrevocable). The devil is in the details on this Medicaid planning and those vary state to state. Good luck.