I took DH for his neuro appointment this morning along with the print out of what he has been doing and saying. The doctor thinks I should start looking at facilities to place DH. It took me completely by surprise! I knew I would have to place him sometime but never dreamt it would be this soon. I asked if DH was in the late stages and the doctor said he was getting there and needed to be in a more secure place. He gave me some samples of Aricept 23mg to try and if they work I have a prescription. DH is aware of what the doctor said and he is okay with me checking places. What worries him is how much it would cost and there not being enough money for me. I told him not to worry about it that I would handle everything. We wouldn't be able to get Medicaid because of our finances so it would depend on where and how much it would cost as to how long I would be able to pay. I don't think he is ready for a NH because he can still do quite a lot for himself so I guess I will check on ALF's.
We go back in 3 months instead of 6 so the doctor can see how he is doing and to tell him what places I have checked! He asked DH who was President and DH said "It's a colored guy, but I don't remember his name". The neuro then asked who was President before him and DH said "It was a white guy, but I don't remember his name either". He did remember it was January.
I don't know how I feel about placing him. Surprised? Shocked? Numb? I suppose like everyone here I will do what I have to do to take care of DH.
Without a doubt, your doc's perspective on placement bears weighing in the balance, but ultimately it's going to come down to how things are going at home, and whether that is starting to look like a necessity to you.
Jean21, I am holding off on placement as long as possible. However, it is important to check out possible locations - especially since your DH is cooperative.
There are some very good checklists to utilize in evaluating a home. Believe me I learned the hard way that just because a facility has a 5* rating doesn't mean that it is a good place. Food looked good at mid-day (2pm) but dinner was served after 7 pm when few family members were there. It was a pre-wrapped half sandwich, fruit, and frozen juice - which thawed and made the sandwich wet. PJ's roommate was a stroke victim and his wife came during the day. While PJ was there for rehab (30+ days) I opened the meal for both of them, etc. My comments re the meals was "OK" only no change.
The place I like which is specifically for Alz patients in late stages where they do not really know their family, etc., is very expensive. We're talking $60 to 90K per year in the DC area. Home nursing assistants are $20 per hour.
Do look into the many options and locations. Ask questions, arrange for more than one visit and at different times to see various activities, etc. If your DH is a wanderer, then security is an issue. Even the question of who provides medical care and what say you have needs to be investigated.
Ask this group questions, you will get lots of help.
I think I have calmed down since yesterday! I will check out some places but I really don't think DH is ready for even an ALF. I have checked some local places on the internet and as far as I can tell the main things they would do is his meals and make sure he takes his meds. I do that here so I don't think it would be worth a few thousand dollars a month just for that. So many LO's here are far worse than my DH so as long as he is continent and take care of shaving, showering, eating and dressing himself I will keep him home.
If your husband can shave, shower, eat, dress himself, is continent, is not violent, and does not wander, and from what you wrote, seems to understand that you will be looking for places, I don't understand why the doctor would recommend placement. Maybe he just wants you to have places in mind when the time comes.
Joan and Bludaze, The only reason I can come up with for the doctor recommending placement is because of the print out I gave him to read. It was for the past six months from the last appointment and DH had gotten angry a couple of times over me not agreeing with him that we have to take care of the outside. That was when the Seroquel dosage was raised and so far he has been okay. He did bring it up yesterday but I think that might have been because we were out of Sertraline .... I filled the prescription today! The biggest change I see is his memory or lack of it. So I will wait and see how he does on the Aricept 23MG, he took the first one this morning so I am watching for side affects!
My DH can do the dressing, shaving etc and is not in need of the NH or ALZ Facility..at an early meeting shortly after DX our doctor told me to do the hunting to see what is there and what is good. I have not visited places yet but an going to ask if the doctor is on staff at any of them.THe thing in is in our area one may be very good now and it can change in short order. I learn a lot at the ALZ mtgs. In our area also are some homes that are well run, take 4 to 6 people and cost a lot less. A lot depends upon where you live.I know I need to get this done however.
My DH is in stage 5 slipping into 6, but dresses himself, showers 2-3 times a week, is continent. His behavior is getting worse, I cant imagine him even agreeing to check out places, he still thinks nothing is wrong.
Watch out for that Aricept 23. My husband was on it for a month or so. His incontinence increased dramatically and he had some really bad nights (and so did I!). I had plenty of the 10mg on hand, so I put him back on that. We have a doctor appointment coming up to sort this out.
My husband is stage 6, incontinent, cannot dress himself, refuses to shower, hardly lets me shave him, cannot do it himself, can feed himself, having trouble speaking coherently, Mini mental today, unbelievable, couldnt even draw a clock, cdidn't know what a watch was, thought it was summer (about 40 inches of snow on the ground)... etc, etc. neuro suggested in the nicest way, that it may be time for me to start thinking about lng term care. we don't know wherehe'll be in 6 months, etc. I had to be honest, I told her 6 months ago, I would not even entertain the idea, and now.... I'm beginning to investigate. i have hone appts with the va monday to see what might be available, It's getting to be time to hink of these things for me. but if my husband would dress, shave, bathe, not incontenent, etc, I would try to correct his behavior with meds. good luck.
Good luck Chris. I always thought I would be accepting of having to place my husband, until Thursday. when the neuro said I should start checking on places. According to the neuro the Aricept 23 is supposed to improve cognition.
Oh Jean21, I hope so. But understanding what this disease does, I would doubt that he'd IMPROVE significantly. I hope your doctor is right on top of this....and I am soooooooooooo wrong. I can understand meds calming and making them more manageable, but I haven't heard of any that would IMPROVE COGNITION. We can hope and pray there is one out there that does.
Blue daze and Joan: When you write that things can change in a heartbeat, do you mean a major stage shift? I have not looked into options for placement and our physician has never mentioned it. A friend suggested putting our names on a waiting list because there may be a wait when the time comes. Visits to these places to comparison shop seems like more than I can handle.
I'd like to suggest that you call a good ElderCare Attorney and have him help you with the Medicaid. My husband and I use a ElderCare Attorney and he tells me that at the appropriate time (when we need to start looking for placement), that the attorney will transfer ALL of our assets into my name (spouse) and put them all into annuities that I can draw upon to make dh's care more comfortable upon placement. Apparently, this transfer can be done to the spouse only and annuities are taxed in a special way, as well. Afraid that's all of the details I have but it could help you immensley. We also will do a Safe Harbor Trust at the same time. Please let us all know if you do this and what your attorney tells you.
BTW, regular attorneys are pretty clueless about the state/federal regulations pertaining to Medicaid and placement, etc.
mothert, We saw an Elder Law Attorney about 2 1/2 years ago when DH was still "with it". I have POA for financial and medical. I didn't want to do the Medicaid part at that time because as I understand it you can do it when /if your LO is placed. I am not sure how much I would have to spend down to be eligible for Medicaid so I don't know yet if it would be worth it. I will check further with the ELA when it looks like I will be placing my DH. Also, I believe even if there is money/accounts in my name it would still be considered joint. I could be wrong on that but it will be something else to check when the time comes.
Brooke-I started looking thinking placement was far in the future. When the disease went into overdrive the place I selected didn't work out because DH was so ill. Every time I thought I was planning ahead the disease was one step ahead of me. I am an RN and the rapid progression really surprised me. Yes-it can turn on a dime.
jEAN, i THINK MY DH IS ABOUT THE SAME STAGE AS YOURS, AND CAN DO THE THINGS YOU MENTIONED ABOVE. i COULDNT EVEN CONSIDER PLACING HIM AT THIS POINT, ALTHOUGH I AM EXHAUSTED. I MAY CHECK MYSELD IN FOR A LITTLE R & R.
Jean - I was just listening today to our ELA, he has a weekly radio program in our area (Seattle). He had a estate/tax specialist attorney talking about the new estate tax laws just out from our esteemed congress. There are a variety of ways using Trusts to shelter your assets and still get hubby cared for. I caught just the tail end of a discussion with a caller who was wondering about Medicaid and asset reduction, etc. Apparently, there is a means to place ALL of the assets into your name (as you are the spouse and the IRS allows that for the spouse - yes, that spend-down is no longer valid - I think), tap into Medicaid (and yes, it happens at time of placement); then you can use your assets to supplement what Medicaid pays to improve the level of care for your hubby. Tax laws are changing and it looks like in our favor, so PLEASE check it out with ELA sooner rather than later.
Dh is on a waiting list for placement in the facility of my choice and I am hoping it will be soon. I'm ready for it, and I think he is: - incontinent for urine and increasingly for BM - trouble getting him to bathe daily, which he needs because of the incontinence - cannot dress himself at all and has trouble undressing, refuses to take off pajamas or underwear - very little social behavior, in company he tends to sit and smile (at his granddaughters or good friends, sometimes) or glare (at almost everybody else) - increasing shuffle while walking and stiffness in movement, hard to get in and out of the car, in and out of bed - no idea of correct behavior in a shop, picks up everything sweet that he sees (fortunately he doesn't see much) and wants to eat it before checkout, has trouble waiting in line. - cannot recognize our car, increasing confusion about which door of the car to open, how to fasten seatbelt, which side of bed to get in, which chair to sit in to watch TV. - no interest in activities except looking at magazines or ad folders, watching TV. Fortunately, increasingly content to just sit and stare or fumble with a small object. - almost complete lack of coherent speech, although he will occasionally suprise everyone by saying something that hits home. He has been relatively easy to take care of up till now, because of day care and the fact that he sleeps long and well. I am sure that if he didn't let me sleep, I would have placed him much earlier. I would also have placed him earlier if he had not been prescribed Risperidon or if for any reason he could not go to day care.
I just had a call from a facilitator for placement. Wow, she's already got two places to view with openings available.....far more quickly than I thought would happen..a bit scary. After this week, I'm going with the PCP's recommendation...I'm about to loose it other wise.
JeanetteB, it looks like your DH is at about the same stage as my DW:
Incontinent of urine, occasionally of BM if I don't get her to the toilet often enough Showers only at day care center twice a week (she goes 3 days a week - 4 days for the month of Feb while I take a course) Cannot dress or undress Essentially no social behavior Walks with shuffle Hard to get in or out of bed or car Does not go shopping with me, but will take food off others plates at dinner Cannot fasten seat belt No interest in activities - just sits, moans, or sleeps Speech bears no resemblance to what is going on, hard to understand Sleeps well, so I get plenty of sleep.
I am not considering placement at this time, but have hired quite a bit of additional help at home. I have found my "Andrew" in Margo, who comes 4 mornings a week and various other times.
Ok, Marsh and jeanetteB, we are all in the same boat, only my Dh has become increaingly unpleasant. he yells, curses, calls me stupid, lier, whatever comes to his min, and who knows why. If he were pleasant, I would probably not be as anxious as I suddenly am. he has taken to not sleeping the night through, up around 2 or 3, until 5. then he goes t sleep.... i cannot, by that time, I'm all in a froth and wide awake. Kathi 37, you mentioned a facilatator, what is that? thanks.
Question for someone with more medicaid insight as relates to this transfer of assets to the spouse so that once medicaid is in place and you can then use the income to support/provide more for the LO..what happens once the LO passes on? Does Medicaid come knocking to be reimbursed? And how then are the spouse's assets protected from the state?
Chris r, she helps find a suitable placement..no cost to me at all, but she is extremely knowledgeable about our area She asked many questions to pinpoint G's exact needs..and mine. She is very well known and well thought of in our area..right now she's a god send for me. She will go with me to check out places..has given me the up front costs just to walk thru the door..$$$$$.. I must admit to feeling lost at the moment...I wasn't prepared for the quick response, but after spending an evening with him..again realize this has to happen. Our daughter is valiantly trying to help...very hard for her to come to grips with this stage..our son thought it should have happened months ago. As every one says..we wait too long. I will check out the first Memory care spot tomorrow and another on Tuesday with this helper. AND will report back.
Marsh, it does sound like they are about at the same stage. I could get more home care -- and I will if placement does not happen soon. I have a talk at the care center next week (he goes to day care at the same place) and hope to find out more then.
Marsh and JeanetteB- My DH is in the same place but add fecal incontinence and constant pacing to the list. I was ready to get on one waiting list but the facility seemed a bit reluctant since they weren't sure they could handle the extreme pacing and how he gets into things. Thankk God for the good daycare I have at the moment,
Mimi - Once the family assets are transferred to you then those assets belong to you, and are no longer community assets, and I don't believe Medicaid can come and give you a bill later. However, I'm not positive and this questions should be asked the ELA. Our ELA has talked of us making a Safe Harbor Trust at the time of his death, but that only makes sense if the assets are still community property, as the SH Trust only protects the assets of the deceased spouse. If the caregiver, one day end up in the nursing home, whatever Medicaid pays for will have to be reimbursed with whatever is left of your estate leaving whatever is left in the Safe Harbor Trust to your heirs. That's my understanding. There are many Trust vehicles available, the challenge is finding someone who really understands the tax laws and your situation and needs and can fit you with the right Trust vehicle. As with everything in this journey, we have to put on our detective hats and protect what we can.
When we went to the ELA she suggessted I get the house and savings in my name. I'm not sure why because here in SC savings are still counted as joint ownership. We did our wills at the same time and mine has a Special Needs Trust if I should go before my DH. As far as I know the only thing left to do is the spend down if I want Medicaid to pay for DH if he should go in a NH but that depends on what the new governer does with the budget. She has already cut Hospice and according to a lady on TV tonight it will cost the state more because people who could have used Hospice will now go to the Emergency rooms and probably be placed in ICU which will cost a lot more than Hospice.
a) Medicaid and Medicare DO NOT PAY FOR ALF FACILITIES. Only nursing homes. THAT is consistent everywhere.
b) Medicaid rules differ from state to state. See the elder law atty in YOUR state and pay no attention to the rest of us.
c) Before you start paying >$3000/MO for the ALF facility, ask the doctor for meds to calm him/her down; and go to agencies to find an aide who will come into the home and help you. You'll pay for it but it will be cheaper than an alternative. I won't guarantee you'll get an Andrew, and you may need to try a few aides before you find one that will help but if you can find a good one, you'll be happy. And can save your money for later, and prepare for the Medicaid requirements.
I spoke to our social worker at Day care today. She absolutely agreed that it is time to consider nursing home care. I moved up my appt with the ELA to this Tuesday and called my doctor regarding anything he might do to help me. I've decided to not wait for a crisis, but to be proactive, and I just feel so done. I've had stomach pains for several days, and I need to replace my knee. And I need to start having a life again. 'll keep you all posted.
How about this! I finally made the decision to place G...and no one will take him! He is too tall and falls alot...now..why didn't I think of that! I have one more place to check out, but it is 45 minutes from where we live...clear across town, but don't know that they will take him either. I'm about at the proverbial end of my rope. He is getting more and more difficult to deal with...hit me a couple of good whacks on the top of my head last night as I was trying to shower him (clean up from a massive poop mess)..all this at 4:00 AM. Not a great way to start the day! My screams can probably be heard across the entire US.
kathi37, I don't know where you live, however, I was advised to have my doctor put my Dh in the hospital for med evaluation for behavior issues, and then they can move him to a nursing home, and i am speaking of skilled nursing, incontinence, unable to walk, forgetting how to eat, frgetting how to get into bed, etc, plus behavior issues such as anger, yelling, throwing things, to the point that you have fear for your safety. These are things I'm dealing with on a daily basis. can't your doctor help you. But I'm not speaking about an ALF. My DH needs a lot more than assisted living .
i would implore the help of his dr to get him hospitalized for evaluation and then move them to a NH surrounding. they have people to help place them from that point i think from what others say. his height should not be a factor. whats up with that! thats descrimination!and because he falls is one good reason hes being placed.
I agree with all the above. After pulling an all nighter trying to work this out, I'm going to get caregivers five days a week for 8 hour days..and perhaps one day (weekend) at a daycare. Right now that seems the only soution that works. He has had a UTI this week, but that seems under control now, so hopefully the behavior will improve. Our LTC ins should cover all of this...if I can ever get someone on the phone from there! Bad weather in Boston is not helping.
I have visited many facilities over the past years, and NEVER was height an issue. AND, no one ever asked, "How tall is your husband?"
Do you make his height an issue? I learned one thing early on. DO NOT volunteer information to anyone unless they asked. For example, he would not have qualified for an electric wheelchair if they had known he had alzheimer's or any other kind of dementia. The doctor told me that. He had had several strokes and a hip replacement and that was what the doctor said to focus upon. I also learned not to speak when the Hospice people were evaluating my husband. I was so used to answering questions when he couldn't. big mistake. Hospice #1 turned him down. Hospice #2 accepted him on the spot, ...
We become so accustomed to being their 'brain', 'speech' and 'personality', we often sabotage our selves. So, just say you need a place for him to stay, and let THEM decide if it's Assisted Living or more. We don't know how the other residents were classified. Don't do their job for them.
Less is more...........isn't that what they say? Keep us posted.
The only thing about his height was no raised toilets and an extra long bed...both questions brought up by the referral service...easily attainable from any medical supply. This was simply an excuse as there are so few spots available and the preferred an easy placement. Right now my concern is his increasing abusive behavior...out of the blue after a long time gone...not a happy change. Back to the one day at a time thing.
It's the abusive behavior that is sending me on my search for the right place for him, and to the ELA. Yet tonite, he was sweet as pie. he had taken off his wet depends himself, and put back on his pants. Well, that wasn't going to fly.... So I said to him, come on inside, let me help you with your underwear, and he docilely let me do it, with no arguement. If he was like that all the time, I probably wouldn't even think of placing him. we have to watch our own health and well being also. last night, he was horrible, holding my arms in such a threatening way. and then, of course, I lose it, which really does not defuse the situation, but tonite, a different person. I know it's not him it's the disease, but it's in his body!!!
Ok, so I visited one place i was considering today.... and all the people were old and many were in wheelchairs. OH MY! (yes, you'd think I'd never been to one before) .... and the entertainer was singing 'this old man, he play one'...... so now i'm all confused again. Let's go over this, he's incontinent, cantankerous, unbathed, unwashed, confused, cannot find the bathroom or bedroom in the home we've shared for 11 years, keeps me up all night, curses and swears at me. But he can still be sweet and loving. I'm applying for medicaid tomorrow. i understand that medicaid will pay for 40 days of respite care. so maybe I'll wait, and when it comes in, I can at least have my knee done (need a complete replacement) and I'll be able to see if he fts in. OH, I hate this!!!
we all need encouragement once the decisions have been made to place our spouses. i think if you reread your post you will see the reasons there in black and white. while they may be sweet and loving for a moment its the round the clock excess times that we must focus on to see that its necessary. i hope another facility will be a bettter match but try to keep in mind alot of skilled nursing homes have older folks as a majority. and they may tend to put them in wheelchairs to avoid them falling and injuring themselves, although they may still be able to ambulate - some say they find younger spouses in dementia specific care facilities if thats a choice. divvi
Chris, I just had my knee done, and 40 days might be enough but medicaid doesn't pay for in-home care for the most part, so it's less of a problem. Medicaid varies from state to state, and you know - I KNOW you know - you should talk to an elderlaw attorney in your own state asap.