I've had a couple of really hard weeks and haven't been on the boards very much. I have decided it is definitely time for placement, and I'm sick over it. The placement will be in an Alzheimer's Care Facility in Spokane, about 1/2 hour from here. My daughter works for their parent corporation in Seattle and has been "running interference" for me. We have an appt on 10/14 to fill out the initial paperwork and pay the deposit. Once my daughter emailed me the application forms the reality started to settle in. I'm just not really sure I'm doing the right thing, or that I can go through with it. We don't know when he will be admitted but it will be the next available opening. This is totally overwhelming. I know it is for the best but doesn't make it any easier. Right now DH is totally incontinent, has to be showered, shaved, dressed, including changing his depends, his teeth brushed and his hands washed for him. He is very unsteady on his feet, uses a walker sometimes, and a gait belt all the time. There is really nothing he can do for himself except feed himself once I cut the food into bite size. He fell out of bed a couple weeks ago and I had to have my son come help me get him back to bed. He has had a couple of episodes where he was vewrbally abusive and the look on his face makes me think it could turn physical without too much provocation. Right now the big stumbling block is the finances. I have enough in savings for about 2 months, and then my brother will let me borrow from our mother's estate (set up for my younger sister who is developmentally delayed) until my CD matures the last of February. That'll last about another 5 months, and from there I am just going on faith. I'm hoping the facility can get him on their medicaid assistance then. Like I say, I'm just going one step at a time and praying it turns out. We sold DH's gun collection, and that'll help for a while. My daughter is trying to find a market for my Fenton and other glassware and collector plates. The decision has been made, but I am an emotional wreck!!
Hugs, gmaewok. I know this is a step I am going to have to make soon and I need to start making plans but it is so hard to do. I'll keep you in my prayers.
gmaewok, what a hard step to take. It sounds like you've found a good place for him, and not too far away. I'm sure you need relief, so it's a good thing to finally be taking measures. Thoughts are with you.
Gmaewok, I wish you well as you are entering another phase. It's good that your family is supportive, too; I'm sure that helps as you make necessary plans & decisions.
gmaework, from your description it sounds like it's not only time to place, but past time. I don't know how you've managed so well. It's a wrenching decision, but it is in your DH's best interest, and you will get through it somehow. We do get through things, because we have to. You have love and support here, keep us posted. (((hugs)))
It does sound like time, gmaewok. I know your family is being supportive and how much that helps!! but do be sure you check with an eldercare lawyer in your state to help you do what you can to take care of you, too.
Look into the Medicaid stuff NOW. They don't count your collectibles or personal property so it is best NOT to sell that stuff until after Medicaid takes him on. Then you will have a little extra money available if you need it. Call in the Area Agency on Aging caseworker (a free visit no matter where you live in the US) and get her started on finding you financial help.
I agree with folly - it is past time. It doesn't make it any easier, but try to remember that staff in the facilities rotate shifts. No one is on 24/7 as you are. Once he is settled in and taken care of, you will be able to get some rest and be able to see him and tend to him as your stamina allows. You can't do it all, and you are not expected to.
gmaewok, I understand that this step is the hardest for us, and we're all here to support you while you go through the process, and afterwards, which I understand is very hard emotionally as well. You know we are here for you, and have both of you in our thoughts and prayers. Sending hugs your way - ((((((((((((((((HUGS))))))))))))))))
gmaewok, Why are you going to wait 5 or 6 months to apply for Medicaid????? once your husband is in the NH for 30 straight days you can then apply for long term care with Medicaid. Do it then, do not wait. Once you apply for Medicaid if your CD is worth a 5 month stay you will in most States be allowed to keep around $21,000 and then they will let you spend down the rest. Get this done once the 30 days are up. Once he is approved Medicaid will pay you back for what you have spent for that 30 days after the Medicaid deductible.
Positive thoughts and prayers headed your way, Gmaewok. You have done a champions job taking care of DH this long -- now let others take over so you can spend quality time with him and get some rest. We're all here to lend support.
Gmaewok, listen to Jane. Apparently you don't have to give up everything. So sorry you're having to place him but I would agree that it's definitely time.
Thank you all for your support and advice. I'll be checking with medicaid shortly after he is placed. I just never thought of talking to them that soon. We have no idea how soon an opening will come up, and I feel guilty hoping it is soon. For one thing, that will mean that another resident will either have to die or be transferred to a facility that can provide more complete care. My head tells me this is what we have to do, but my emotions keep screaming that I will be abandoning him. I'll likely stay in a state of turmoil until there is an opening and the "deed is done."
Dear gmaewok: You have done a great job, taking care of your DH, up until this point..I can imagine you must be worn out...it is time. I am going through the same thing, preparing for what we all have to face, sooner or later....I am seeing an Elder lawyer, which is very important...he will see just where I am financially, and take care of the Mecicaid issues...This desease takes its toll on its caregivers...we have to realize that it is best for them, and for us. I am not looking forward to that day, but we have to do what needs to be done...my prayers are with you...with Hugs...Rosalie
gmaewok, I know this is tearing you apart, but it is time. Your 24/7 work is done. God bless as you move into this stage. Lots of hugs going out to you.
gmaewok, I agree with everyone else it sounds like it is time, it is a hard thing to do, you are not abandonding him you are getting him the help he needs, i thought the same way about placing my dh but I have come to terms with it , you cannot do it all let others help.(((((((((hugs)))))))))))) hang on we are all here
I shared with a special friend that I felt guilty about calling In Home Hospice for my husband. I keep hearing what she told me...."You should only feel guilty if you don't call them". Thanks, Special Friend. I hear your words every day!
Nancy-why for goodness sake would you feel guilty for calling hospice. If your husband didn't qualify for their service they wouldn't have accepted them. It's not like you gave him the disease.
I just did. I didn't understand enough about Hospice. I was interviewing a company that offered In Home Care (for $23/hr) - and the Case Manager asked me if I had had a Hospice Evaluation. I thought, "OH NO!!..not with Alzheimer's." My experience with Hospice has been with friends and family members who had cancer and were in agony. He suggested I get an evaluation. I was so nervous when HIS people came in, I probably messed up that interview. That man suggested I call another company that he had much respect for. I did, and Mary H suggested that I just sit and let them conduct the meeting. (keep your mouth shut, Nancy). He was soooooooooooo approved. I realize I can bring out the good side of him and lead him in questions so he knows the answers. Then, while she was here, he had help but insisted on going to the bathroom by himself. (just down the hall.) He came back with wet trousers from his crotch to the cuffs on both legs. I had to change everything he was wearing, because his shirt tail was tucked in and it was wet. He couldn't answer the simplest question, ..barely could talk. Bluedaze, dear friend, I only see HIM, day in and day out,....and I don't see his decline as easily as one would who comes in for the first time. I still felt guilty, and don't want him to think I've turned him over to what HE also used to believe was end stage care providers..
That being said, I had said I felt guilty early last week. After five days, one TIA, one swack that resulted in a fanny flop..(I was squatting down trying to put 'matching' shoes on his feet), I realize I cannot manage this completely alone.. He's getting more and more hostile and I realize that I'm unable to redirect him all the time.
The Hospice nurse told me today that in time, I'll see that I needed them more than I realized. For ME! She's probably correct. Just hate to admit I cannot do it all. nancy
I've bought some time here by hiring a Home Instead careperson to come 2 days a week (as a 'housekeeper'). DH likes her and she is doing some much needed organizing and cleaning. That said, I know I need to proceed with planning for the next step of placement. Thank you all for sharing some very important information to consider about financial managing as well as emotional managing of these things.
gmaewok, it is a difficult decision to place them. I felt like I was a failure in that I was younger and I should be able to take care of him. It took me a while to realize that one of the things that I enjoyed most after placing him was that without all the effort to do the personal care, I could enjoy him again and appreciate him much more. When I was so caught up in the requirements of daily living, I sort of lost sight of him as a person. Placement gave that back to me.
gmaewok, Be sure that you do apply after 30 days for the Medicaid, as I said before, the least amount they will allow you the spouse at home to keep for yourself is a little more than $21,000, the more you have when you apply the more you will be allowed to keep up to $109,000. Do not sell your items until after he is approved, those personal items are not even countable to Medicaid unless you sell them then the cash would be a countable item. Still no matter what they will allow you half up to $109,000. In otherwords, if you have 218,000 they will allow you to keep $109,000 and spend down the rest, if you have $70,000, they will allow you to keep $35,000 and spend down the rest, this is true in almost any STATE. If you pay the Nursing home for 7 months and have no cash left then they have none that they can allow you.
You can sell the other items after he is approved if you need the money for yourself and it would not be counted.
We are not in this situation at this time, but I keep reading about "spend down". What does that mean? Is one expected to just go on a buying spree in order to get down to a certain amount of funds, or is the "spend down" what one pays for care until medicaid kicks in?
Okay, Jane, let's see if *I* understand the spend-down.
Once he is in a n.h. there is a "snapshot" taken of the countable assets that are shared (not HIS IRA or pension or SS, nor the house, but the joint CD or Fidelity account or whatever). Of this you are permitted half, up to to $109,000. Now, we're looking at HIS half. That might pay for a year or two in the n.h., BUT you are allowed to take some of that for expenses: for a car. One car, whatever flavor or cost. For household repair/maintenance (I am not sure how this is figured; one could easily spend $50,000 on a kitchen renovation). For burial expenses for both of you. And, in some states, for a special kind of annuity for YOU. This may well run down his $109,000. But it's okay.
Then you may have some collections of baseball cards or Lladro figurines or whatever. Those don't count in the $109,000. You can sell them when you want, once that snapshot is taken, and the money is yours. Or you can keep them or give them to family or whatever. The house remains yours, until your death... although I am totally UNclear about what happens if you want to sell it, move into assisted living or just a condo, etc. In some (all?) instances Medicaid can go after the proceeds of the house once you're gone.
What we have to remember with Medicaid is that OVER THE YEARS, with our taxes, WE HAVE PAID FOR OTHERS TO HAVE THESE BENEFITS, and now it's our turn. Period.
briegull, The snapshot of the countable assets will be the FIRST time the loved one is in a facility for 30 days, whether it is a hospital, nursing home, hospice in patient setting or a combination of all these with no break in days, continuous 30 days in one or a combination of all. This could even be years before you actually apply for Medicaid. The snapshot starts then. Now remember I am speaking of the laws now in force, and in MOST states. You can keep half as the community spouse up to $109,000, now lets say you had $400,000 you would not be allowed $200,000, only allowed $109,000, if you had $50,000, then you would be allowed $25,000.
His IRA in most States would be a countable item if it could be liquidated, meaning had not started an irrevocable stream of income, anything that you can liquidate is countable no matter what the tax implication would be to you.
You would not be able to do a kitchen update or anything that took a while to complete because once you have applied you only have a few days to get that spend down completed not months or several weeks, more like a couple of weeks.
your collections would be countable if you sold them BEFORE he was approved for Medicaid, that is why if you will notice I told the other poster they could be sold AFTER he was approved. The wording is something you have to really notice when someone is explaining the Medicaid maze, it is complicated.
If you wanted to sell the house and you had the legal authority to do so, if his name was on the deed then you would only have a certain amount of time to reinvest it into another home of equal or greater value or he would loose his Medicaid until his half of the home sales paid his NH fees.
Medicaid goes after the home only if it is still partly in his name. If you have gotten the home into your name then the home is yours to sell and do as you wish with, and does not go into Estate Recovery, it all depends on how the deed reads.
And yes I do agree that as long as a person follows the legal laws set forth for Medicaid, it is our turn. The laws are in place for just that purpose. These are benefits we are entitled to as long as we follow the law.
Remember I am a person just as yourself, no expert by any means, just giving you things to think about. What you do is up to you.
Weejun, the spend down is the amount above and beyond the amount that Medicaid allows the Community spouse as I explained above.
No you are not expected to go on a buying spree, but they do allow you do spend down on needed items for yourself or your loved one, home maintenance, a car, in some States a Medicaid qualified annuity for the community spouse, burial, etc. Anything you can think of that you need, most people purchase things that would help them long term, and thus makes the amount they are allowed to keep last longer.
((gmaewok)) My heart breaks for you, I know how very difficult this will be for you. You must try to remember that you are placing your dear husband because you love him enough to want the best care possible for him. Placing Lynn was the single hardest thing I have ever done! I wanted him home with me, I still do!! But, I love him enough to want what is best for HIM.
You will still be his care giver, but now you will be able to a much better job because you will have 24/7 trained staff to assist you with his care. The transition time was very difficult, I wont lie and say it wasn’t...but I will say 8 months later I am very glad I placed Lynn. I now wish I had placed him sooner! He is much better there and is getting the care he desperately needs.
I have hung up my overwrought, stressed out nurses cap and am now once again his wife and his best friend. I pray you will find peace and know deep in your heart, you ARE doing the right thing, the best thing for your dear husband.
Gmaewok - You have received good information here, both practical and emotional. As Nikki says, it is the hardest thing you will ever do. And I also had a lot of trouble getting my heart and my head on the same page. He has been in placement going on 4 months and I have settled into a pretty good routine. I work full time so I go every evening in time to feed him his dinner. I stay for a couple of hours. I have found it to be a relaxing time for the most part. Quality time that we were not getting at home because I was too tired and too stressed. There are still some bad days and I will probably always wish that I had been able to keep him at home with me, but it was not to be. I know that he is getting good care. Lots of hugs and understanding coming your way. Be strong, you can do this.
Jane you have so much good information. Do you have any information on what happens if the spouse purchases the annuity and Medicaid is approved the facility says they don't have a Medicaid bed available? I have not purchased the annuity yet, but was planning on it this month when they announced that little zinger. Nothing was said about Medicaid bed availability when he was admitted only that I had to private pay for 90 days and I am meeting that obligation shortly. Now I am nervous about buying the annuity if I am not sure he will get a Medicaid bed when he is approved. Just when you start to relax a little someone throws you a curve.
DeIs, Have you talked to the people at Medicaid about the annuity? Do not proceed with buying a medicaid allowable annuity without the guidance of an Elder Law Attorney, they have to be set up a special way, according to Medicaid life tables among many other requirements. The wording of the annuity has to be just so. Be very careful trying to do that on your own.
gamewok - So sorry you are going through yet another phase/stage of this disease. All of the things you describe about your DH are identical to what my DH is doing, with the exception of the falling & using a walker. As I read your list, it helped me to "see clearly" that perhaps I too should consider this option more than I have been...all the same reasons you are now feeling are what I've been feeling all along. Nikki, your advice is solid & encouraging. I cannot believe it has been 8 months already that you have placed Lynn...it seems like only yesterday, but then again, I know, as do most of you here, that this disease just keeps robbing us of days, weeks, months and years...and we don't realize it happens so so fast. :-( Y'all are all so encouraging and I appreciate ALL you say and offer up to allow us to "think through" what might need to be done. Again, gamewok, so sorry, but hoping that a bed opens up very soon and you can begin to move forward and get some much needed help. Keep us posted after your meeting on the 14th. Will be praying for you & thinking of you. (((hugs))))
I do have an Elder Law attorney and a Financial Planner that is handling the annuity. They think that he would become ineligible for Medicaid if he wasn't in a Medicaid bed when the annuity started to pay. The facility now says they can apply for a temporary bed until one becomes available. I am notcomfortable that either the attorney or the planner knows how a temporary bed applies to the annuity. I am taking Janes advice and going to the Medicaid office. I was hoping someone here had had a similar experience.
Yes DeIs, Ask you Medicaid office in- take worker, if she does not give you an answer you feel comfortable with then ask for the Supervisor,UNLESS you live in a State where your income would disqualify your husband I can't see how the income from the annuity would cause disqualification, as long as the income is YOURS and not HIS. ONCE HE IS APPROVED it should make no difference if you start drawing the annuity,even if he is not in a Medicaid bed he would still have the Medicaid and it would help pay on the medications etc until the bed became available. it would cause them to allow you less from HIS monthly income that is allowed for the community spouse, but the purchase of the annuity is to save an amount that would go for your lifetime, not just the income they allow while he is living. Am I making sense?? Make sure also that the Attorney is very familiar with the wording that has to be on the annuity contract and the Medicaid life tables. It has to pay out the complete principal to you within the life expectancy that Medicaid has set forth, there are different life tables, make sure the Attorney is using the correct table.
Be sure to ask the Medicaid office because I am only guessing at this point but I would think this is how it should go.
You have to remember, being eligible for Medicaid does not mean they have to be in a Medicaid bed, it means that they have been in a facility for 30 days and your income and assets qualify you, not a Medicaid bed. I am surprised that an Attorney would not know this.
Dels, Please post and let us know what you find out, we can all learn from this, myself included.
Thank you Jane, I feel a little better and I will post again when I get more info. I am like gmaework, my heart tells me one thing and my head screams something else. I thought by this time I would be at peace with placing him, but no I am not. I think that it is awful that we have to deal with such beauracracy (sp?) when we are in such emotional turmoil. Isn't dealing with the disease enough??
I'm so grateful to have you all to offer comfort and advice. Thank you, Jane, I'm learning a lot about medicaid and feel I'll be better prepared when I do talk with them. Yesterday as DH was wandering through the house he just looked so lost. As I hugged him, I thought, "Who's going to hold him when he is lonely or scared?" About breaks my heart.
You are right gmaewok, it does break your heart. They should call this disease the Disease of Broken Hearts. When I go see him he always says, "If I don't know anything else, I know I love you." How can I not cry. It was supposed to be better when it wasn't 24/7 hours of care. They are scared and lonely and who does hold them when we aren't there?
Right on. I wonder if there is some form of denial going on for us? That if they are still at home they will open their eyes one day and magically be there for us, but once they are out of the house we know they are truly lost to us forever. I don't know if this even make good sense, but what does these days.
DelS, my first thought was to say you were wrong. But I was wrong.
I think that it is so hard to place them, when the time comes, because it is a sign that the end is near. A lot of us made a promise, to our LOs or to ourselves, to keep them home to the end, so it is also a sign that we "failed" to keep that "promise."
When we go to the ACF on Wednesday for the pre-interview and to pay the deposit they will also want to talk with Clyde. I am on edge about that. So far, I have not mentioned to him that I am even considering placement. Is it better to try to discuss this with the Spouse first or just take it as it happens? I don't want him worrying about it, but I don't want to spring it on him and have him get his back up about it. And yes, Starling, that is exactly how it is here. I feel I am breaking a promise to keep him home as long as possible. I am totally at a loss as to how to approach this.
gmaewok, if your DH will forget the discussion prior to the visit, why bother? like you say it will only tend to rile his feathers and he wont remember the discussion anyway. if it were me, i'd wait til we were there and let the admin walk you both thru it. they are more prepared and have expertise walking the invited thru the process- then tackle it at that time. be positive if you can- it will make a difference how he sees you react to the visit, maybe he wont dislike the idea as much as you think. its more in our heads too and if we can project more positive than negative i think they can pickup on that. i know thats hard to accomplish considering our choices. good luck, let us k now how it goes. divvi
Please don't add guilt and feelings of failure to the emotional turmoil you are going through. Many people make the promise to keep them at home until the end, but it is a promise that often simply cannot be kept. Physically, emotionally, and mentally, sometimes the time comes when we cannot do it anymore. At that point, both spouses are better off with placement. The well spouse, because it gives them their mental and physical health back; and the ill spouse because they can be taken care of by professionals around the clock. Professionals who are not sleep deprived and worn out from 24/7 caregiving.
gmaewok, divvi is absolutley right; they definately pickup on your reaction. If you husband has any medical condition that could be treated (not necessarily true) you could use it as an excuse that he needed to stay there overnight. I did not discuss it ahead of time because it would have only upset him and he wouldn't remember on that day anyway. I told him it was a medical treatment center where they could recharge the battery in his pacemaker overnight while he slept. He thought that was better than surgery so he agreed without an arguement. I took his clothes there ahead of time and got his room all ready. The staff knew the story and took over when we got there. While they showed him where he would be sleeping, I slipped out the door and sat in the car and cried. It is way beyond being hard.
oh DelS that is a very sad story- but necessary and i think you handled it like a pro. fiblets especially the kind that break our hearts arent easy to do during these times. we do what needs to be done to ease them into the process of what has to come. hugs, divvi