What would you do?(1)

Ed1937

It might not be too far in the future when DW has to be in a facility. Hoping that doesn't happen, but I want all my bases covered if it does. 

The way I see it is that if needed, she could go into a memory care facility that offers good care, or she could go into a nursing home that is questionable. MC would be more costly, and with our money she could probably stay there for roughly a year before maybe having to move because of medicaid. I know moving is not in the best interest of someone with dementia, but the end could come before the money runs out. On the other hand, if I have major medical expenses myself, the money will not last very long. I want the best for her, and I'm not worried about depleting our savings. If you were in my shoes, what would you do? Choose a MC, where she might have to move from, or NH, where she could spend her remaining days? Have any of you considered this decision?

Rescue mom

I don’t know about the places around you, but in my area, (and earlier in another state) when I was looking for my mom, we could not choose between NH and MC. 

They served 2 different kinds of patients.If a person needed NH, then a MC would not take her. And the NH did not want people who just needed memory care. Neither is set up or trained to meet the needs of the other.

Some patients needed nursing AND memory care, then it was a matter of how bad the nursing care situation was. The places would assess the patient, and say whether she was suited for them or the other kind of facility. But all that could be different with facilities where you are.

IME nursing homes are more expensive than MC largely because NHs have more staff with more formal medical training and degrees.

David J

Ed, that’s a tough one. If money was not an issue I would go with memory care. In skilled nursing, no one would keep her occupied and active and she would end up bedridden or tied into a wheel chair. Skilled nursing facilities are just not equipped to provide dementia care. I am willing to live on just Social Security to keep my DW out of one of those places and at home or in an MCF.

I know that’s harsh, but I will never get over seeing my grandmother tied into her wheelchair with surgical gauze, head dropped down and drool staining the front of her hospital gown.

Doityourselfer

In our area MC is less expensive than a nursing home.  My husband is in the severe stage of Alzheimer's so I'd have to go with the nursing home if/when that time comes.

harshedbuzz

Mayor Ed-

It's a lot to consider. I live in a state where Medicaid does not fund MC, so dad would have been turfed from his stand alone MCF to a SNF on the same campus. FWIW, most of the SNFs locally cost about twice what a good MCF does per month. 

In addition to trying to anticipate the best use of limited funds, I had to be mindful that there could be circumstances under which my mother might require SN and I wanted to make sure there were funds left so that she could be admitted to a quality facility especially if she had not had a cognitive shift and was fully aware of her surroundings. 

In your shoes, I would put her in the best fit at the time. I looked at a couple of CCRCs that would accept self-pay for MCF and then help the resident and their family transition to a Medicaid bed in their own SNF. At one location, these were just down the hall from one another. When we did this for my auntie, her new room was just upstairs and she was able to spend the day in the MCF for lunch, dinner and activities which getting a higher level of care on the SN floor. 

A couple other considerations-

While many MCF will allow a PWD to "age in place", there may be an expectation that the family will pay for additional aides. When my guardian aunt wasn't happy with the level of hygiene being maintained in the MC side, she decided it was easier to move her sister than schedule extra people for morning and evening tooth care and washing. She did go at lunchtime to handfeed her sister at least one "unrushed" (it took auntie over an hour to eat a meal) meal a day and hired someone for the days she wasn't there. 

Some MCF will not accept a new resident who isn't ambulatory or who needs to be hand-fed, so you might not have the MC choice when you are ready to make that decision. 

The other piece is that should she need to transfer to Medicaid, she will need to be considered eligible for that level of care. 

HB

ladyzetta

Dear Mayor Ed,

When I placed my DH in my small town I was lucky that the AL/MC facility had a few medicate beds open. Like the others have said the care in a MC facility is much better for a person dealing with dementia. Also allowing them to age in place is good. That way you will not have to worry about adjusting to a move. 

The MC facility my DH was in was like a big family. I knew a lot of the family members who visited their LOs. I was able to take our little dog in for the visits and she loved all the attention she got. 

You have your DWs best interest in your heart you will do the right thing. Now is a good time to start checking things out.

Hugs Zetta 

Ed1937

David J wrote:

Ed, that’s a tough one. If money was not an issue I would go with memory care. In skilled nursing, no one would keep her occupied and active and she would end up bedridden or tied into a wheel chair. Skilled nursing facilities are just not equipped to provide dementia care. I am willing to live on just Social Security to keep my DW out of one of those places and at home or in an MCF.

That's pretty much how I feel. My only concern would be if she was forced to move because medicaid was ready to kick in. Thanks.

Ed1937

Thank you everyone, for the replies. For some reason I was under the impression that MC would be more expensive. I have done a little investigating both facilities, but that doesn't mean my brain was working like it should. It's hard to do. 

Keeping her home would be my first choice, if the man upstairs grants me the ability to do that. We'll just have to see what the cards holds in the future. Thanks again. I appreciate all the input.

PS - Mayor Ed? I could get used to that. I don't even remember my name being on the ballot!

ladyzetta

Mayor Ed,

There was no ballot, but I saw a few days ago where you were appointed that. And it fits. You are a very Kind person. There are a lot of kind people on these boards.  Take Care.  

M1

I think I started it Ed.  Sorry (but not really)....

However, I AM sorry you're facing such a tough decision.  Like you told me yesterday, I know you'll do the right thing.  Your instincts are solid.  Hope the family conference helps.  All of this is ridiculously hard.

Jo C.

Hello dear Ed.   It is really a positive that you are looking at this before actual need.  It is a huge decision and choice.   I did find that I tended to over think matters in this regard.  I also found that after placement, not only did my LO have an adjustment period, I too had an adjustment period.  When I look back, I realize the stress, the worry was actually far more than needed to be; but I felt SO responsible.  Why not have your daughters start screening for future needs care settings.  This would be a great help if something abruptly changed and there be a sudden need for a higher level of care.  It happens.

With my LO, I found that there are two types of Memory Care.  One type of MC was licensed more or less under an expanded "ALF" license, but not an ALF:  They took only those clients who were ambulatory and did not continue once a person was not either fully ambulatory or a one person transfer from a wc; but not all of these MCs accepted wheelchairs. In this model, there is NO bedside commode; the person must be able to get to the bathroom independently, as well as the dining room to eat; they do not keep the patient through to the end of life.

The second MC was licensed under a NH model.  They took clients who were not ambulatory; they could use bedside commodes and the client could be incontinent.  In this model, they cared for clients through to the end of life and a client could be bed bound. Yet; in my experience, they were not consistent.

First, my LO was admitted to an Alzheimer's MC facility.  It was beautiful and also had lovely fenced in grounds with walking paths.  They had so much activity; there were many activities per day and musical folks that came in to entertain.  I was told they cared for the resident until end of life; a resident if in a wc, needed to be able to do a two person assist transfer..  HOWEVER; therein lay the blatant lies of the marketing person and Administrator who were simply wanting to fill beds for corporate numbers.   As the weeks went by, I soon realized the care was truly far suboptimal.  They missed so much; they also did not do two person transfers from wheelchairs.  The dining room was bedlam at mealtime with grievously noisy compromised residents seated with much higher functioning residents which caused much dysfunction.  How I missed that during my mealtime visits prior to my LOs admission, I do not know.

I had to insist that my LO be permitted private rest time in the afternoon = when I had twice visited prior to admission, I somehow had missed what the day was like - no one, and I do mean no one was permitted to be in their room after breakfast.  Every single resident was out in the huge activity room until after supper.  This made it easy to "baby sit" the residents being all in one place.   Horribly; many, many residents were asleep in chairs for hours with heads hanging. When I insisted my LO be given rest time in her room, it was as though I had committed a crime. 

What happened, was that I had to move my LO; there was no way I could have her continue with suboptimal care; they missed so much and ignored other stuff.  They were SO beautiful,, and I even attended some activities leaving work early to do so.   Yet; underneath all of that they were rotten to the core despite the beautiful facility and grounds with gazebos.  And by the way; no end of life care, that I found was also a lie.

Finding an appropriate place to transfer to was not easy.  I happened to come in contact with an RN who belonged to a local Dutch church.  She clued me in on a NH owned by four Dutch churches. I was not certain about that, but checked it out anyway.  It was a wonderful, gentle caring  facility with almost no staff turnover.  They had a dementia unit which served as a MC and it was a NH model with plus, plus. Their care was amazingly wonderful.  They had activities; but not as sophisticated as the other place which was okay.  The "other" place had highly sophisticated activities I think to impress the family members; not the resident/client; one being a "party" with the entire cheer leader squad with short skirts and pom-poms from a renowned football team.  My LO did better with lower key softer activity.  Care was indeed superlative and very detailed.  My LO stayed for nearly three years and actually passed away there with hospice also on service.  I am ever so grateful to them for the loving care.

Yes, it took some time for my personal adjustment after changing facilties. Yet; the level of care soon comforted my LO.  It was far more personal and true.  My LO did not decline after said transfer, and she seemed calmer; I think she felt safer.

The MCs did not take Medi-Cal; but the NH my LO transferred to while preferring private pay patients, did indeed have a contract with Medi-Cal.  Many of their clients came in as private pay for whatever number of months they could, then the resident was changed to Medi-Cal. No difference in care in any way.

Be cautious when looking to find out at what level your wife MUST be at to receive care and beware, beware of lies being told to hook the client.  Talk to other family members you see.  Look online and see what Yelp might have to offer in way of what complaints are just to get an idea of what to screen for.  Sometimes the Ombudsman office will be able to help with what your wife's needs may be. 

Ed, it is very imporant that you conserve your assets to be sufficiently able to care for yourself with your medical needs; that is no small thing, it is indeed a priority.  Your wife will continue to decline; that is a given, she will receive care at a decent level; you will need to be able to attend to yourself so you can continue on and not have a preventable physical dccline from lack of affordable care needs.   There are indeed good facilities that have a Medicaid contract; one needs to look.

NOTE:  There is no perfection in all of this; there is only the best one can do under the cirumstance with the challenges at hand. 

Do not leave you out of the equation; remember, that is a priority. You are a fine fellow and a wonderful carer; it is a pleasure to have come to meet you here where you give so much of yourself. Thank you, Ed.

J.

Ed1937

Thank you so much again, friends. Family zoom meeting Sunday at 3 PM. It's more to update everyone on the progression than anything else. But maybe someone will have ideas that are new. Zoom should work well since we have 2 sons living out of state, and a close adult grand daughter who will be in Florida then.

Marie58

The MC facility my DH now resides in had a day program, prior to Covid, that he attended for a few hours per week. The staff got to know him and he got to know them. I got to know the staff and was able to witness the care they gave DH and the full-time residents when I took him there and picked him up. I also got to know some family members of the residents, who spoke highly of the facility. This was an ideal situation in our case. Ed, if possible, I'd encourage you and anyone who has a day program available for their LO to try it out. 

Another plus is a day program is less costly than residency and will probably allow you to keep your DW home for a longer time.

Ed1937

Marie, that sounds like a very nice fit. Thanks for the post.

2 Young

I have had the same thought processes, Ed, as I am in pretty much the same boat. There’s a lot of good input here from other members. I wish you the best. As for me, some days I wonder why I haven’t placed him yet. Then I hear more horror stories and just can’t bring myself to do it yet.

jfkoc

Having additional care in the home was the solution here. In less than  a year we went from 12 hour a week to 24/7.  

I was able to eat 3 meals a day with my husband and watch TV together. Conversation by that time was pretty much with the caregiver. Thankfully I liked all but a few until I was able to put together a team and then all 4 were wonderful. One was a caregiver with a lifetime of experience, one was a nursing student and two were Hospice employees. They got along beautifully and if/when the need arose, covered for each other without involving me. 

I paid $15 per hour, in cash, to each for a 12 hour shift.   $2520 a week...best money ever spent. looking back a facility wold have been almost as much and I had the luxury of some free time away or to spend with my husband in our own home. I did not have to go back and forth and visit in a facility. We were together here. 

If my husband slept at night I could have done two 8 hour shifts. That would have been a chunk less. If you had one person doing a 12 hour shift that would be an additional chunk left in the bank.

I did have Plan B in place but it worked out that was needed. My suggestion// Look at all of your options keeping your well being in the mix.

King Boo

While not always possible if there is not such a resource in your area, ideally, if you can find a place that has good care and both a Memory Care and a nursing home on site, your private pay funds may be enough to pay for MC long enough that they would then have no issue taking her in the nursing home on Medicaid when your funds run out.

This is the model at many private non profits in my area that have good reputations.

It's a hard fact that we have less choice with no money, and while entering a nursing home on Medicaid happens all the time, you have more control with the above model.  You also have a lot of leeway to move back and forth between the two if she has a temporary illness needing more support.

Beachfan

Hi Ed,

In lieu of pulling paperwork for the tax preparer (a hated job), I dug out my "spreadsheet" from November, 2019, when I was researching and visiting facilities for DH, just in case.  By way of comparison, the local NH, which has a MC wing and accepts Medicaid was priced at $12,045./month (I am sure it has gone up since then.)  The two MC facilities that I found acceptable as they served only Alz/Dem patients were $6425./month and $5375./month, all inclusive.  A local retirement village, which advertises a MC wing ran $5696./private room and $4035./shared room per month, with additional charges as needs arose.  This facility also "evaluates" potential residents for suitability.  I know of 2 families whose LO's were rejected or asked to leave.   This might give you some idea of costs and services.  We are in PA, about 55 miles north of Harrisburg; our area has a lot of elderly and low income population.  Good luck.  The research was interesting, but in actuality, although we would be private pay and can thankfully afford it, to me, I could not justify paying for care that is so easily provided here at home.  DH is an easy patient; for now, he will remain here at "Chez Beachfan", where his care is impeccable and "el cheapo".  

Back to rooting in the file cabinet.  

Beachfan

Forgot to add that Medicaid does not pay for Memory Care in PA outside of a NH.  (To access my stand alone Alz/Dem. choices; we would pay privately.)

Ed1937

Thank you again for the additional posts. There's a lot of good thoughts in this thread.