Have reached a crisis point. I am researching placement possibilities . My DH is only 66 and beginnings of stage 6.
A nursing home is inappropriate as he is in very good physical health and young.

I have been to a Sunrise Memory Care and just found Arden Courts info but gave not visited.

I live in Staten Island, New York . I will consider New York or New Jersey.

Can anyone share their experience or knowledge please. This is Soo very difficult .

Lorrie, I am so sorry you're in the middle of a crisis; searching for placement alternatives is difficult enough without a crisis. I know, I was were you are 6 years ago this month and my husband was 58 years old.

If the crisis is not related to aggressive/violent behavior of your spouse, you will have an easier time placing him. Since he's over 65 I would think most of no all places you look at should accept him.

As you know, I'm in the Flemington, NJ area and have researched and visited many ALFs and NH's in NJ. Does your husband need to be in a locked memory care/dementia unit? If so, I would recommend Arden Court in West Orange, NJ. It's supposed to have the best memory care facility in central nj. I looked at the one in Whippany, NJ and liked it very much; in fact I put DH's name on a waiting list but never placed him. If I had to place him, I would not hesitate to place him in an Arden Court facility. I have not personally been to the West Orange facility, you might want to call them and see what the ages and stages are of their residents. I wanted a facility where there were younger people who were not at the end stages of their illness because like your DH my husband was young, healthy and very mobile.

Another highly recommended facility in NJ is Meadow Lakes in East Windsor, NJ (near Princeton). It is a continuing care community with a small (but lovely) dementia unit. They would not accept my husband because of his aggression but they used his age as the reason for not accepting him.

I would also recommend hiring a geriatric care manager (www.caremanager.org) specifically for the purpose of finding a facility in which to place your husband. They typically charge by the hour ($120) plus mileage, but can really narrow down which facilities are a match. They can be very helpful.

Good luck. If you want to contact me, email joan and she will give you my email address.

Edited to add:It's very important to make sure if you hire a company or a geriatric care manager to help with your search, you ask them up front do they get any "kickbacks" or payments for recommending the facility or placing your husband. BTW,you should know "A place for mom" is paid by the facilities they list/recommend.

Hi Everyone,

I invite you to log onto the home page- www.thealzheimerspouse.com - and read today's blog, which was prompted by this discussion. I hope what I have written gives help to all who are considering placement.

joang

Joan---excellent blog on the differences, generally speaking, between the different levels of residential homes for our loved ones. I would add this comment----which may only apply to nursing homes/skilled nursing facilities----but I think sometimes applies to the dementia-specific facilities. My husband went directly from our home---where he had 24/7 care by paid caregivers---to a skilled nursing unit because he quit walking and transferring him became a two person job. He is young (was 61 at the time we moved him) but no longer speaks, was never violent, and because he no longer walks, we did not need a lock down facility. My comment is about hospice----the nursing home recommended we interview the hospice programs they typically use, and we did. It is important to do so for several reasons----first, if your loved one is under hospice care, the nursing home will NOT send him to the hospital for infections such as a UTI----all of that will simply be managed in the nursing home. This was important to me because at his stage, there is no need whatsoever for that additional care. The unexpected benefit of hospice care, I have learned, is the hospice team seems much more efficient at obtaining items like a wheelchair that fits, a special shower chair, the bed pads, etc. etc. And in some cases, if the nursing home ordered an item, it is added to our bill (we are private pay). If hospice obtains an item, Medicare usually pays. Another benefit we have seen is the hospice nurse on call is usually more responsive than the nursing home's physician on call---and once she sees my husband and determines there is an issue---she contacts the physican.
I realize that many don't understand hospice is available to a dementia patient, since the term "terminal" may be relative, but it may be worth it to have your loved one evaluated. In Texas, my husband must be "recertified" every 60 days, but as long as he is "declining" that is not an issue.

Joan, this is a good article. I would like to add a few items.

ALFs can vary greatly from state to state so you need to ask carefully what any ALF will do. The different levels of licensing is also important.

Think about the ALF building itself. Newer ALFs, especially those that are dementia care only, are often built on one level and designed to patients can wander. While my wife doesn't like her new ALF she appreciates no longer having to go up and down stairs or wait for the elevator. And since so many dementia residents do wander it is important that a facility be built to accommodate this behavior. Also, is the facility designed to allow residents to go outside in a secure area, weather permitting.

ALFs have been changing over the years, accepting residents who would have been rejected previously. Some will accept residents who cannot transfer themselves or who have other limitations that would not have been accepted 5 years ago.

Find out about medical staff. There may be onsite PT and OT staff. Is there a medical director, and if so, what does s/he do? They should supervise the nursing staff, but how often do they visit the ALF? If you need a neurologist or psychiatrist or dentist is there someone onsite or do they need to be taken to that doctor. My wife's ALF has medical staff working for a clinic connected to the ALF, a rarity, so most medical cares are taken care of by local staff. If you are expected to take your spouse to various doctors this can be problematic if a trip to the ALF is over an hour.

Thank you again Joan for being such an excellent resource to us.

I live in British Columbia (B.C.), Canada, and things are a bit different in this country although all the foundational principles the same.

For example, in B.C. one can't access a nursing care home without involvement of a Case Manager. She/he is assigned to the person as soon as deemed by the health care team of the need for facility care. However, family have no say in the chosen facility as the policy is "first come first served." It is a gruelling process no matter what and not for the faint of heart. I knew my husband's assigned facility would not meet his care needs so immediately requested a transfer to a facility of my choice. This took place after my husband assaulted a couple of other residents. Now he is in a dementia focused place and not aggressive as they know how to handle him.

And, as others have said, and has been my experience, often our loved one does way better in a facility than at home.

Mary,

The ALFs do offer to have someone take my wife to a doctor for an hourly fee. But if they are taken to a doctor not associated with the ALF I would prefer to take her most of the time (and that is what I have done with the previous ALF). But if the doctor who sees them is on-site I don't feel that I need to be there because the doctor knows her other doctors and ALF staff and that the doctor will talk with me later. If I moved my wife to Fredericksburg where there is only an Internist associated with the ALF I would need to find a psychiatrist, a neurologist, etc and either use every single vacation day taking her to a doctor or hire someone to do it for me. In this case I would be less comfortable not being there since the doctor would not be tied to the ALF's staff and knowledge. In this case I would have to budget 2 hours of driving in each direction (doesn't usually take that long but can when the traffic is awful).

Fortunately Copper Ridge allows us to supply her meds, I just got a bill for a month of meds without insurance (and put in a claim to insurance). Some ALFs require you to use their pharmacy. The bubble pack requirement is normal and is often the law.

Hi Amber, Im interior health BC too so we must be close. My husband is on the wait list for the next bed in the facility I chose. I have a word that it MIGHT be in a month. I did a visit and tour there yesterday and really liked it. As my husband is under 65, they are going to apply for provincial disability and if approved, I would get a reduced rate. It seems they have never had to deal with someone so young as they appear to be reinventing the wheel. So hoping it works out for me.....where are you located?

abauche - I'm north west of Kamloops in the Cariboo by 100 Mile House out at one of the lakes and you? One month wait list gives me the idea that you are in a small town. Kamloops was 2 years and VAC George Derby was longer. You must be close to my age too if your hubby is under 65. Wouldn't that be a hoot if we were just down the road from each other so to speak!

My husband is 59 years old and I am in the same spot - he is incontinent and can not speak - I have in home help but only a couple hours a day - I am at a point where I can not do it anymore - he was diagnosed at 53 years old - showed signs when he was 51 - I am from Massachusetts - no place will take him - it is so hard - I do not no what to do - he attends a daycare program as well but it is the nights and early morning messes that are so difficult when I have to get up and go to work - I am a teacher - I am only 55 and have been dealing with this since I was 47 - Sorry just needed to vent - I feel for anyone who has to deal with this at any age - Thanks

katie, Is your husband a veteran?

katiemikaelian if he is a veteran the VA has an excellant place in Bedford. My FIL was in his 60s when he went there, but the place was nice. Nothing great in looks but the staff were great with them, let them wander the hallways, etc.

Hi Lorrie, did you ever contact me? If so I didn't recognize that you were from his site.

I hope you are doing well (as well as can be expected) and if you want, please ask Joan for my email. I think Arden Court is a good choice...it would be mine.

LFL. I would like to email you but I don't know how to get your email from Joan. Would you please explain what to do.

Today is one of the worst days of my life. I will bring my husband to his Memory Care Residence later this morning.
His daughters will go also. My closest friends will be waiting for my return at my house. My daughter will be staying overnight after work this week. I am fortunate to have support and have the means to place him in a very good
Place.

BUT, right now I want to say NO. No I am not willingly ending our life together. How do I be the one to tear us apart?
I am watching him now sleeping in our bed for the last time and can barely see through the tears. How did I agree to this ? How will I leave him with a lie that he us just going to see the Dr to help his dizziness and make him better .

This all happened Soo fast I think. From thinking he was going straight downhill and he has been, to starting to look for options ..to a number of safety crisis and poof ...it is done.

How do I survive the heart wrenching pain I feel?

Lorrie,

I completely understand how you feel. A year ago, I was where you are, and I honestly didn't think I would survive it. But I have, with the help of friends, relatives, and website members. Know that what you are feeling is normal, and give yourself as much time as you need to grieve this stage in your life. Two weeks after I placed Sid, I finally managed to write a blog - http://www.thealzheimerspouse.com/blogs-08-2013.html I hope reading it will help you cope and know that you are not alone in your emotions. What also helped me was reading the posts under the "sticky" topic above - Cargiver life with those in residence.

joang

Charlotte, my husband "eloped" from the ALF I put him in 6 years ago, and no other facility would take him at that time after he eloped, so quite honestly I have no additional experience regarding his adjustment and acceptance. Clearly he did not adjust and I did not either during those few weeks.

Sorry people took your head off when you said the same thing based on others comments (like me). I was trying to offer comfort to Lorrie during this most difficult of times. I guess since I don't have recent experience with placement, I'll let those who have help comfort her.

marche recently started a thread about an interview on the Diane Rehm radio show that talked about a new book. I finally went to the program's webpage and read the book excerpt, as well as reader comments. I was surprised to see the following comment about what Medicaid pays for:


"I am in the process of looking for a Memory Wing that accepts Medicaid (very difficult since the funding cuts).
I am distressed to learn that the Medicaid program that pays for Memory care (Special Assistance Medicaid),
has no Spousal Protection program for the stay at home well spouse. That means almost all of his monthly
income will be taken by Medicaid except for a pitiful amount left to buy his grooming needs, etc. The well
spouse protections are for the Medicaid LTC Skilled Nursing facilities . . . ."


Does anyone know if what this commenter says about Medicaid is correct?

Myrtle,

Please go to the home page - www.thealzheimerspouse.com - and read the blog "Assisted Living vs Nursing Homes" . It explains that Medicaid does NOT pay for Assisted Living room and board. They only pay for "level of care", which can be as little as $250 a month. I have never heard of Medicaid paying for assisted living room and board, nor have I ever heard of Special Assistance Medicaid. As emphasized in the blog, you will, unfortunately, have to do your own homework as to the Medicaid rules in your State. Or, if you have the funds, hire a geriatric care manager to do the work for you. They are experts in their field, and will give you all the correct information for your State.

joang

Elaine, I know what you mean about your "line in the sand." I also thought that I would keep my husband at home until I couldn't care for him physically, but now that he has been in LTC for almost 3 months, I realize that my goal was based on the huge assumption that he was better off at home than in LTC. This weekend, I finally admitted to myself that he probably better off in LTC than he was during his last 6 months at home. He now has structure and lots of socialization. At home, even with day care, he did not have enough structure and I could see he often had no idea about where he was and what he was supposed to do when. But I am lucky in that he has such a pleasant temperament and that we have a good place for him to live available. So I can't generalize.

Thanks, Joan. I was not asking for myself. My husband is in a state-owned vets home for which I pay a relatively modest amount out-of-pocket, so I will not have to deal with Medicaid. I know the difference between NHs and ALFs but I just assumed that when the commenter said "Memory Wing," she was talking about the dementia wing of a NH (not an ALF). Maybe I was wrong.

What is "Memory Care" anyway? I know that it is an advertising term and that there is literally no such thing, but it must be a euphemism for something specific. Does it mean the dementia unit in a NH or does it mean an ALF?

My understanding is Memory Care facilities are designed just for memory impaired people. they are usually a locked facility for safety, have areas for patients to roam safely, and more staff trained in dealing with dementia patients. Every thing is geared towards the needs of the dementia person.

My understanding is that Memory Care and other similar names refers to dementia care where the resident is in a locked down unit. It might be a floor in an ALF or it might be the entire ALF. The 2 common components I see are (1) higher levels of staffing and hopefully better training and (2) locked unit.

My wife is in an all dementia ALF and they don't use such aphorisms. Having looked at a number of ALFs if you need Memory Care (by any name) I prefer a place that is all dementia care or has a building devoted to it. Preferably designed to allow for wandering, split into smaller neighborhoods (they may use this term or something else) and all on a single level and safe access to the outdoors in good weather. And hopefully all staff, including cleaning crew, have dementia care training.

And you are not splitting up you as a couple, the dementia has already done that.

Thanks a lot for clearing this up. I guess I was thrown off kilter by the comment I read on the website for the radio program, in which someone said that Medicaid would not protect any assets of a well spouse whose spouse was in memory care. Clearly these terms are being used in different ways by different people. From now on, I'll get my info. from the blogs and comments on this website!

I guess my husband must be in "Memory Care," since he is in the "Secure Dementia Unit" of the state veteran's home. They have structured activities 2x per day geared to people with dementia and all the men wear ankle bracelets and roam around the unit at will.

Yes, Memory Care is the nice way of saying Secure Dementia Unit.

LFL, the double and single rooms don't always work that way. My wife's ALF has a NH as part of it. As residents become unable to pay for care, they are moved to the NH and the home helps apply for Medicaid. The NH has both double and single rooms but they cost the same and Medicaid is not a factor. I don't know why they have both double rooms and singles in the NH (the ALF is all singles), I suspect they planned things to work differently 20 years ago when they built the building.

Yesterday I visited a memory care facility only 40 minutes from our home. It was absolutely beautiful and I put my husband's name on the waiting list. Currently the wait is two years. This company is currently building another memory care facility just a few blocks away from the one I visited, but it is strictly private pay. The one I visited will take Medicaid. However, if I can scrape together enough money to do private pay for my husband initially, he could get priority placement in the Medicaid location when the money runs out. What to do, what to do? I think he's declining more, overnight incontinence is becoming more frequent and he's anxious at the day program as well. We're trying to adjust his meds to combat the anxiety and I'm hoping it will help a little bit. So much to think about.