DH is now off ALL prior AD meds. He was started on Depakote for a couple days. Paxil was started a couple days ago and they said Ativan is being used "lightly" with good results. But today the ARNP suggests that I explore our means, and feasibility of either placing DH or getting home care. The healthcare pros seem to be encouraging placement, and all say DH is 24/7 care. Now asking if I am seriously finding that I cannot continue to do 24/7.
I have alot of questions and concerns about all of the options and alot of kind people saying they will get more information for me. Fears about what I have to give up? sell? sign over?
We all know the day is coming to make decisions, and yet we never seem to "really" see it coming.
I had Hospice for my Mom and her condition was managable at home and the last couple weeks they put in a catheter. I imagined I would need to place her but after the catheter was installed she became easier to take care of. If I felt I needed to place, I would.
New Realm...I am no expert, but I experienced the whole caregiving gamut. When my late husband was in the "rough" part of the disease....the agitation, the meanness, and the no sleeping, pacing all the time....I had to find a good AD facility for him. Then, when he became bedridden and no longer able to communicate, I brought him back home and took care of him for three years. It is a personal decision and a lot depends on your health and stamina and whether you can get help when you need it to "escape". Follow your heart....do what you feel is best for both of you and remember you can always change your mind.
New Realm, do you have hospice in place? Does the hospice group you are using have social workers and/or chaplains? What services will hospice provide you with. They do a lot more these days than they used to because it works out better for a lot of people to have the patient at home, and with help that becomes possible. Make sure you know all of your options.
I can only speak from my own experience, but I came to the point where I could no longer give - or provide at home - the kind of care my husband needed. He has now been in a care facility for 1 1/2 years, and although it was heart-wrenching to make the decision and stick to it, it is just another way of loving and honouring him.
New Realm, have you talked to an elderlaw lawyer? The options for the way money is allowed to be spent vary so much from state to state, that we can't give you precise advice and all the well-meaning people who'll "find out for you" WILL NOT KNOW the state laws. They'll know what uncle george, with no children, did. They won't usually be able to help, well-meaning though they are. The Alzheimer's association will have phone numbers, and the first consult's usually free or minimal cost.
Diana, you've been fighting a very hard fight for a long time now. I imagine you're more exhausted than most caregivers -- mentally, emotionally, and physically. Perhaps you are too worn down to do the 24/7 thing ... there's nothing wrong with that.
You have rights and wants and needs, too, you know. You have a right to a reasonable life, and to health and happiness.
You have fears because you don't know what you're facing. When you know what you're facing, you'll feel better.
Whatever decisions you make ... don't make them based on guilt. Or pity. Be balanced and objective, and do what's best for BOTH of you.
I agree with Sunshyne - find that quiet place inside and determine what is the right choice for both of you. If you feel that you can't give him the right kind of care at home, the loving thing to do is placement. If you feel that home is the best place for him, then it becomes a question of what will it take to take care of him at home and can you provide it (not necessarily do it all)? There are pros and cons to placement as well as keeping them home. Think that through.
There are lots of threads on this website that talk about people's experiences in placing their loved one as well as those that have kept them home.
New Realm, follow your heart and do consult an elderlaw attorney to understand the financial consequences. I agree with the others - you need to make the right choice for BOTH of you. I have posted before regarding the fact that no one would endorse letting my DH come back home because of their concern for "my safety" because he is physically healthy and I have severe RA. I knew that keeping him in a facility (no matter how good the facility was) he would continue to be aggressive and would be difficult with the potential of going to facility after facilty until we had no choices. Thankfully (through my perserverance) he is now home, on the right meds and we have a live in and he is doing well. Either choice can be difficult, so be prepared for the unexpected fall-out. Much love and luck to you and your DH.
New Realm, with my Mom, I figured NH would be about $150.00 a day. She was easy to care for , for the most part. Hospice took care of her bathing and personal 5 days a week and I hired some help at $10.00 an hour to give me some time to myself. This was much easier on me than visiting daily at the NH. You just need to weigh your pros and cons and realize placing is not the end of the world. Some of them have to be placed. I would not stand for violence, nor would me kids want me too. I don't think anyone should have to endure that, disease or not.
Social worker visited me the other day to just talk, and perhaps help me sort out some questions. I'm filling out application for COPES, which is a DSHS (medicaid) program that can help with nursing care hours in-home.
Everything is just in the information stages right now.
I am on information overload and nothing is soaking in. I know my mind and body have been going 24/7 for so long, not sleeping well for over a year, so my "adrenaline drive" has subsided and gone into "down time." I am so tired, day and night.
When I see DH he becomes so anxious and upset telling me he can't deal with "living here" at the Psych area. He hates it. I feel really awful after visiting him there.
I had quite a bit of communication with social workers, hospital discharge planners, Medicaid, etc.
I will have to put things in my name (house), take things out of my name (car), and spend down a small 401K. Basically, I understand I need to pay for up to 12 hours per day home care at least for the first month or two. I cannot place him in a regular nursing home or assisted living. The only locked Alzheimer's unit is more than our total monthly income and is strictly private pay. I am told he will be VERY difficult to place because he is exit seeking.
The ARNP wants to discharge DH next week (he can be held until the 20th of this month). Things really are overwhelming right now. My first thoughts are to get our rental property sold, and if the tenant who has been wanting it can get a loan I will probably let it go cheap. The rent is counted as "INCOME," although the amount collected pays all costs related to the mortgage, maintenance, etc. It's kind of a wash out, but still counts as income.
Anyway, so much to think about. Right now I don't want to think about DH coming home to just me, so I really have to get it together and arrange care at home. I really have to figure out how to get money out of his 401K. It's probably gonna be tough, but I have to get it figured out.
DH did not do well when my sis and I visited. He got real anxious and wanted to get out of there. My visit, I felt, caused him more discomfort. I talked it over with the ARNP and the DC planner, and they suggest I may want to take a break from visiting.
New Realm, maybe bluedaze can help you. I think she has been through something like this. Her DH was also exit seeking. Thinking about you and hoping for the best solution.
Diana I have felt your pain. I tried to e mail you but it bounced back. Husband and I had a terrible time during his three psych admits. Placement was also difficult as he escaped too many times. This was from a double locked dementia facility. Please E-mail me (from my profile) if there is anything I can do for you. I have told our story before and don't want to bore the others with a repeat.
I'm sleepy so please excuse typos. Here goes-Diagnosis is FTD (frontal temporal dementia). Started having horrible rages. Spent hours on the phone screaming at people. Bank, insurance company and almost our broker fired us because of his tirades. Asked to leaave a cor dealership when I needed a new car because he got so ugly. Stole a work truck because it was parked in our drive (they were roofing OUR house). Baker Acted (involuntary psych admits) x3. Took off in his car (license pulled) and went missing over 24 hours. During his admits docs questioned me about his diagnosis as meds weren't working. Duh-they were using AD meds which only make FTD worse. Escaped from a dementia unit and kept in a psych unit for 3 months because we couldn't find a place that would take him. Put in a dementia only facility in a double locked unit and wearing a wander guard which alerts if a door is open when he is near it. Cut off the guard and presented it to the social worker. Escaped twice. Only way they would keep him was if I hired a 1 on 1 aide to watch him (at my expense). I am an RN and know many people in our community. Here's where it gets slightly illegal-on their advice I contacted husband's psychiatrist and told him I needed husband snowed on drugs or no one would keep him. Doc explained that is illegal to chemically restrain a patient (as if I didn't know that). Game plan was to snow him and then gradually reduce meds. It did work. Only by doing much research on diagnosis and medication was I able to convince the doc to go along with me. No happpy ending. Now end stage with Hospice-bt at least no longer raging at everyone. The end
briegull-that was the shortened version. I went down to 100 pounds and wanted to die. I was still working during this nightmare as I needed the insurance.
bluedaze, you do need to retell your story occasionally for the newbies. Sometimes they think they're the only ones dealing with something like this. Also, for the ones who are just dealing with the frustration of short term memory ....it makes us thankful for where we are in this journey.
bluedaze, I'll admit that when I first started reading the boards about all the things some of you were going through, it did scare me. In fact, I think my first post was "When does all this horrible stuff happen?" I was reassured by Joan and some of the others that it probably wouldn't happen in one fell swoop and some of it may never happen. As I read more, it really prepared me in case some of this did happen and there's so much good advice on how to handle things.
With all you've been through, I don't know how you've survived with enough sense to help the rest of us. When you tell someone to hang in there, you really know what you're talking about. Thanks, bluedaze
Bluedaze, bless your heart, you have been thru the wringer for sure with this dread disease. your Bill left you involuntarily and on short notice. that makes it especially hard to lose them overnite instead of the long drawn out process many of us go thru. like i've said before- giving light to even the worse stories and complications adds knowledge for everyone here. hugs ))) friend, divvi
ps i also think it also shreds the light on the fact that FTD victims dont tolerate AD meds, and they can become especially violent quickly-
My sister has been here from the "opposite coast" since last Tuesday, and is departing back to Ft. Lauderdale this noon. Her trip here was planned for a couplle months........to see our Dad for what she fears is the last time. Her family is in limbo (trying to sell an upside down house vs losing it). Both suffered layoffs and haven't found new work. Our Dad has AD and lives at a facility nearest to me which is why I'm the one she is staying with. This became very bad timing for me due to DH's hospitalizations and all the other decision making/preparations I needed to be busy with at this time. I didn't have the heart to tell her at the last minute that it is very bad timing for a visit. Bless her heart, she wanted to try and help with anything she could, but you'd have to "know her" to realize that it would be hard for ME to have her help....other than to spruce up a bathroom, or do dishes, vacuum, etc. This past 3 day weekend would have been such a "window" for me, but sis was here. The previous weekend, though I was still in a dizzying state would have been a good time to straighten out my head by doing some cleaning, or document searching, purging, whatever. But DIL, granddaughter and their funny but hyperactive dog were here visiting. DIL hung out too, hoping to help me by not having me be "alone" and also by helping with some of the driving responsibilities involved with getting my kids to and fro to the college. DIL and I have never lived near each other to build a close relationship....as in really getting to know each other. And I thought it was so precious that she wanted to be here for me. So there I am. I don't ever want to hurt peoples feelings, so my sis is leaving today, and DH could be home as early as tomorrow. I hope I can push that out to at least Thursday. I know Friday is the limit. They have to get another court order to keep him past Friday. So, after sis leaves and between the mad rushes to get the kids to and fro I will try to make lots of phone calls, set up nursing assistants, find the pot of gold over the rainbow, etc. I may not be on here much during this bit of rush, but still welcome comments and suggestions from my friends here.
I just got a call from the hospital asking if they were going to send DH to the state hospital 90 miles north, or if I'm bringing him home. Friday he will be coming home and I have so much to try to arrange right now. It is dizzying. I don't qualify for anything until I spend things down. That shouldn't take too long with the cost of care and all. I'm just resentful that I have to spend it down...........and be basically broke when its over.
In the meantime I will need to see our attorney to put the rental home and our primary residence in my name only (hopefully get the rental home sold), and access the 401K to start spending it down. Seems I get lots of different answers, but most recently was told that in our state ALL ASSETS, even if in my name only are counted.
I believe that in all States, spouses are allowed to keep certain assets including their home, car, and somewhere near $100,000 and still have their LO's qualify for Medicaid. I remember reading a post by Jane on one of the threads that reiterated this. One of our senators, Barbara Mikulski, sponsored this legislation and I think it was called the Spousal Impoverishment Act. A qualified elderlaw attorney should be able to give the the particulars.
It's HALF of all joint assets (not counting his 401k etc).. up to I think $104,000... BUT in most states you can buy, with his half, a special kind of annuity for you. GET TO AN ELDER LAW ATTORNEY. NOT AN ESTATE PLANNER or the guy down the street or his frat brother. Apparently some states do count your own ira or 401k in as part of the joint estate, some don't. And that of course would make a difference. BUT YOU GET HALF of the WHOLE. I'm not sure that putting things in your name alone matters much in the case of your residence.
New Realm - we live in a community property state which includes everything. That is the reason my sister kept her husband home instead of putting him in a nursing home where he should have been for her sake. She just didn't want to loose all her finances.
An idea, that she did, can you put him in one just for a month to give you more time to think, sort out and decide? I know it cost her about $4000 per month in a foster home.
Do you know an elder law attorney in the area? I went to elderlaw.com and the closest they had listed was up near Olympia. I could not believe there were none in the Vancouver area (although there may be).
I know that in Illinois there are provisions for what is called the "community spouse". From what I understand it is a complicated equation that takes your housing costs as the greatest test of how much you require to live while your LO is in a NH. I haven't contacted an elder law attorney yet as my husband was just diagnosed last August, but I do have the name of the Certified Elder Law Attorney near me that I will call when I feel the need.
Deb, I went to see one over a year ago, when he was first REALLY diagnosed. She checked to make sure all my wills, etc, were in order (put together by an estate planning lawyer which is what I'd been told I needed). They were. She outlined for me what would be needed (like, you can buy a car out of his half, any kind of car. So for now, unless you're really in need, hold off on buying another and expect to get one later). And said, contact me immediately (here's my phone, here's my email) if he goes in the hospital, in particular. And otherwise, spend down not on him but on your house, etc, as needed to make it more comfortable for either of us.. There's a five-year look-back on money gifts to family or whoever, but "stuff" IS NOT paid attention to. I don't know if this means buy diamonds for your grandkid instead of putting money into a 529.
If he falls or something and goes into a hospital, he has to be there 3 nights (which will be covered by medicare in most instances) before he can then go into a "rehab" hospital which mediCARE will pay for, for 90 days I think it is.
Of course, for EOADs the game is different and even less appealing.
I was told by elder law attorney that there is a five year lookback. Even with a pre-up and in my name, medicaid does not consider your income separately. You are allowed 1 home up to $500,000, 1 car and no more than 104,000.00 for spouse and 2,000.00 for husband. Good-luck and wishing you the best!
Briegull, that's interesting advice, very helpful ideas I don't think I've seen before.
The share of assets that the "community spouse" can keep differs from state to state. Also, as dear Jane has taught us, some states allow you to protect even more assets via an annuity. To see what your state allows, go to:
http://www.elderlawanswers.com/
and use the "State Information" link in the dark blue-gray bar across the top of the page.
FYI, the "ceiling" has been adjusted for inflation; it's just shy of $110,000. And some states allow the community partner to keep the full ceiling amount if the joint assets are at least twice that.
On the annuity Sunshyne mentioned above, I believe that when the LO dies, the remaining moneys go to the State to reimburse what Medicaid covered. If anyone is going with that choice, make sure you understand about how it will play out after the LO is gone.
Thank you Kathi - right now I don't have any money for an attorney. I have downloaded the forms and need to get the will and POA done and signed. Fortunately we don't have anything to worry about.
When my dad was in the nursing home, medicaid put a lien on their home. (this was in Oregon). My stepmom could live there as long as she wanted but when she sold the house, medicaid was paid from the proceeds. I thought that was a fair arrangement. Course this was 1984 - my stepmom lived in the house for another 10 years.
She was working for hospice but I think not liking it. She was a peer advisor on the old AA Forum but disappeared from there a while ago. I'm taxing my memory-but she may have remarried. This is all from several years ago.
I remember her too. But, I think at the time I remember her I was so confused myself and experienced something new and different most everyday with my dh that I can't remember much about her.