I JUST KEEP SHOOTING MY FOOT

toolbeltexpert

Well DW is still in the geripych unit but the SW suggested that she is almost ready to be released. The first 2 choices have no beds any way you look at it, snf and or mc. The SW suggested a place that was near me and it was 4800 a month, so off I go, I got to meet the administrator and she confirmed they had openings at 4800, semi private, I wanted to go look at them, she had keys in hand, when I said I didn't know how long I could do it. Brakes smoking like an 18 wheeler that missed a light, oh she said, this is long term, I asked what is the minimum, she said life! they want people who are going to live there till they die. So sorry she said I know this is hard. REALLY I should have let the SW figure it out. They advertise respite care for a week?  This is the second time, the first place the SW suggested  the other day,  I asked the administrator  if they had a locked facility,  and she asked why is she exist seeking, open mouth shoot foot she was when she first got there.

 I hate just sitting back but the SW doesn't seem to gung ho about placing her. I haven't slowed down for a minute, I have made several trips to the trash with things that needed to go, I have cleaned, closets and toilets , gotten little sleep, I have taken three loads of paper and school supplies to the church to be distributed. I am talking 12 rolls of banner paper 5 ft wide by who knows how long, reams and reams of parchment paper like for diplomas, every kid of paper you can think of more than a thousand pounds so far and all that was on the second floor.

I had mowed Monday and again today cause it rained almost three inches, mowing here is a 5 HR slog that doesn't include weed eating at 90 plus. I am thankful for the rain as we were getting really dry. I am trying not to get behind but I can't make any headway with a place for DW.  This is gonna sound terrible, but my worst nightmare is DW having to come home because there isn't a bed, I need to try to prepare for the worst case scenario.  The upstairs is all torn apart and all the big houseplants are still lining the front porch. and half a room of yard sale stuff on the second floor that needs to get out of the house. I need to go to the doctor because the tip of my right foot bi toe has been numb I try to take good care of my feet, I keep them moisturized. I have been thinking I might have diabetes for a long time.I should have made an appointment for that 2 weeks ago.

End of rant. 

On the good side, I found some things that I had forgotten about, a hundred plus 45 records, oldies of course, I found the 8mm films of her family that I hadn't seen and thought they might have gotten thrown away, they were inside a small suitcase which was inside another suitcase talk about a surprise. Lots of old pictures. We have matching frames with a picture of us as infants. Another plus my Dw isn't exit seeking very much anymore, the other day she thanked the nurses for how good they have taken care of her. She had another visitor from the church. He brought her, her favorite shake. He did say it was like a loop playing over and over, welcome to the world of dementia. I am thankful though because he digs graves and right after a funeral he had to drive 70 plus miles to visit her. Him and his dad are truly like family.  The SW said her hearing aides are being charged and seemed to be working. 

I brought her a word search and a card this evening, I couldn't go in because today isn't a visiting day,so I just gave it to the nurse outside the unit.

Thanks all for listening to me.

toolbeltexpert

dayn2nite2

Social worker is hoping you’ll change your mind and take her home and her problem is solved.

You really aren’t talking like you’re prepared to place her.  This is not respite and you’re either committed to placement or not.  

If you take her home you’ll be back in the same situation in a month or so and maybe it’ll be painful enough that you’ll be ready at that time.  If all you want is a respite, any place will do.  Good places want long-term residents.  If you’re thinking you’ll have her there for a month or two and then take her home, you aren’t ready.

Ed1937

Stewart, this place that's near you - do they have medicaid beds? I wouldn't want you to miss out on something because of an oversight. 

Love the pics of the two of you. Make sure you take care of the old pics. The more time goes by, the more they'll be appreciated.

M1

 I love the pictures too. I think day2nite is right, they are probably picking up on your ambivalence. Stewart have you talked to a CELA about qualifying her for Medicaid for LTC? It's probably at least worth a conversation. And I'm kinda surprised they let you in the door of the place without doing a wallet biopsy first, that's been my experience.

But back to the immediate issue: even if you're not sure in your own heart, you need to put on a front for the hospital folks that home is not an option.  Hold their feet to the fire and make them do their job to help you. And remember, each facility will have their own assessment team that should go see her in the hospital and assess her, so it's not entirely up to you, they need to be sure they can handle her needs and not just take your word for any of it.

This is a very difficult thing, I know it is tearing at your heartstrings. But you- like me-need to remember how much you were struggling. It wasn't working, and it's unlikely to improve.

Scooterr

Stewart I don't have any words of wisdom in this area. The other folks are a lot more knowledgeable and have sound advise. Just wanted you to know I'm thinking about you and praying for you and DW. Thanks for sharing the pics.

Jo C.

Stewart; you are a very good person.  I think the world of you, and I understand how much you care about your dear wife and how much you love her.  I am however, taking off my Peer Volunteer hat and speaking to you as I would speak to my brother if this was what he was dealing with; emphasis intended..

I would tell him - You are a very intelligent man, and yet; you continue to keep shooting yourself in the foot - this actually may be secondary to a psychological self-defense mechanism.  You really express not feeling comfortable with placement (always a difficult decision), you also are extremely uncomfortable with the actual expense of the cost of such care, (who wouldn't be), those are absolutely normal feelings . . . . you also appear to possibly be feeling not only ambivalent but perhaps unwittingly using avoidance regarding the dynamics. When subconsciously balking about something - we can actually cause our own self-sabotage inducing a negative outcome ourselves by saying or doing things that are negatives and block success the way they have been doing.  It may be an unconscious mechanism, but one can have the power to stop it just by recognizing it. 

Why fuss about respite care.  That is an entirely different product and you cannot compare it to the need for long term care - exactly what you are planning is LTC - your off the cuff spontaneously blurt out to the care facility admin. person you can only pay for care for a limited time and you do not know how long WHY did this come out so freely?  I am sure you are asking yourself the same question.  Possible unconscious self-sabotage?    First; you always will need to find out if the facility being screened accepts Medicaid patients.  IF ASKED about your ability to pay, and you will be, you can also tell them that you can pay for some months privately before Medicaid will become necessary; that is a big positive for the facility being willing to accept a patient.   Just be certain that all facilities you look at will accept Medicaid and DO pay privately for a few months if you can.  That gains admission beds faster and far easier than a straight Medicaid admission.

Brother of mine, I would also say;  I also note the majority of your substantial Post was mostly all about the time spending doing heavy duty cleaning out of the house and outside work on the large property . . . that appeared as primary focus . . . none of it was small jobs and still with much more yet needing to be done . . . that dear one, can also be how we manage to avoid the real issues, covering up the ambivalence by unconsciously burying oneself in unconnected work . . . once again, possible avoidance, which can be self-sabotage because one is not paying attention to the real issues and getting the real work done from the concrete placement plan to seeing your doctor for your own medical needs.  That the unconnected work needs to eventually be done is really understood - BUT - your attention at this point in time is best served to be focused on pretty much nothing other than getting the care plans in order for discharge placement which is imminent.  This is not only about your quality of life, it is also about the quality of life for your wife and what will best suit and meet her needs; I know you are highly aware of that and are deeply concerned re the placement.  Her discharge is expected very soon.

You otherwise by default will be at home with your wife in the house along with the environmental upheaval; responsible for her physical care 24/7. Cooking, cleaning, toileting, bathing, dressing, healthcare issues, managing any possibly resurgance of negative behaviors triggered from being at home, and all else including her appointments with her dementia specialist and others.  It is likely she would not be able to be left alone in the house while you worked outside on that large property for the hours that would need.  Perhaps that would work out alright and if so, then all would be okay.  In such a situation, there is always the unknown and a risk; pretty much the unknown and some risk are in place with all decisions.   This situation, as, "Day" mentioned, may possibly put you right back in the same arena with more care and placement needed a bit later when it may well be much more difficult to get it accomplished.  (NOTE:  Are you aware that Medicare has lifetime limits on the number of days they will cover psych care?  If not, it would be good to take a look at that for possible future reference.)

As for the Psychiatric Social Worker; his/her job is not to find the placement for your wife - the job is to give you a list of potential facilities if necessary and help make actual final transfer arrangements and transportation if an ambulance transfer is desired, but the family is expected to do most all of the work getting the choice and acceptance of placement done which you have been trying to do.  Your wife is not the only patient in that unit and the Social Worker has many responsibilities for many family members and for the unit as well as legal requirements, so the attention for placement endeavors by such staff is pretty short.  If there was no family, then the Social Worker would be the one to find placement, and it would be the first one found; not looking for the best or nicest. It is you who carries the responsibilty for your wife as exhausting as that is and has been.   It would be best to communicate with Social Services and her psychiatrist that you are still looking for an accepting facility OR that you have re-thought and are taking her home.

It would be a good idea to do a bit of thinking about the possibility of unconscious self-sabotage and ambivalence as well as possible avoidance, and how focusing on heavy cleaning out the house and grounds work permits you to get your focus off of that which bothers you the most which may be those urgent problems that need asap addressing.  If that is so, and if you recognize that, you can pull yourself up by your bootstraps and get your suspenders over your shoulders and do what needs doing.  NOTE:  The house will still be there, the property will still be there with their jobs waiting for you while you do the actual work that requires your immediate attention.  Once that is done, you will be free to once again return to paying attention to the cleaning out of the house and mowing/tending the property, etc.  

If this were my brother, I would say, please; no more possible avoidance or possible self-sabotage if that is present.  We here know what a caring person you are and how much you want to see the right thing done - but sadly, all the heavy lifting is all on you, as the one who must do; you are strong and can do it. 

And to Stewart and one and all, if I have hurt anyone or angered or upset anyone, I apologize; but to cover up and tell Stewart anything less than what may possibly be present is not helpful - it would be to possibly perpetuate some dynamics that have the possibility to lead to hurtful outcomes causing our friend Stewart even more stress and distress. 

Dear Stewart, if you have change of mind and decide to take your wife home and give it one more hearty try, then we will stand with you and do our best to be helpful as things evolve either direction.  We care very deeply about you; our hearts are with you in hopes that all comes together in the best way possible. Whatever final choice you make; you can do this.  When the dust settles, you will feel so much better; peace, calm, serenity and steadiness will once again be part of your life.

One of your many caring Forum friends,

J.

ImMaggieMae

Stewart, I just wanted to let you know I’m thinking and praying for you and your dear wife. I wish I had an answer or advice for you. I love the pictures. The two of you were real cuties. Thank you for posting them.

toolbeltexpert

Well I had written a post that took an hour to write and I swiped the screen by accident and it's gone. so aggravated right now.

Ed1937

Just a tip. If you write a long post, highlight it and copy it before you hit the send button. Then if something goes wrong, you can paste it into another post. Been there, done that.

toolbeltexpert

I will try again.

First let me say that I am not offended by any replies, I believe good counsel makes wise decisions. I will attempt to explain why I have done what I did, I am not trying to justify what I am planning, it was and is still my plan, but it is very open to change if it has a meaningful purpose for my wife's care.

Jo C I hadn't ever thought of what I am doing as a self defense mechanism, but you have got me wondering. We all avoid painful situations when we don't know how to deal with it. I do get it. 

I want to address the respite care first because it was brought up several times. Respite care in my plan, was a back stop so to say. If I can't get my first choice I was thinking that would help me buy some time till a bed became available, if that makes any sense to you.

I really hope I have come across the right way with the SW about DW being placed. She cannot come home, it's not safe for either one of us. I have repeated this more than once and will continue to do so.

Let me explain my first choice and how it has dictated what I am doing, I have explained the respite thing. 

My reasons are as follows.

1 I know the staff and their training. They are heavy in Teepa Snow Pac skills and I have watched them use them. They have a low turn over, I know because I visited here for 8 years. I know their names. They have quality care.

2. I like the facility, the memory care is a locked wing with the skilled nursing attached to it. The MC wing has a beautiful outside space that is confined and it is peaceful, shaded, and we'll maintained.

Now the bad, they are personal pay with no switch to Medicaid. I heard you all gasp NOOO. This fact has driven all that I have done.

How am I gonna pay for it,? Jo C  yep I am stressed about it. Who wouldn't like you said. But if I go this way it will force me to, 1 get a job, whether that is me working out of my garage or working in a factory. I will say there is so much to think about when you consider how having an income will affect my SS income, ECT.

2. sell the farm, which in my mind, I am thinking might happen soon? Which is why I am trying to keep it up now, Jo C your right The farm will be here after I am done. I am stressing all the stuff like it needs to be done.I am always thinking, what if I die? 

Why you ask, I was brought up with the mentality pay as you go. Medicaid for me takes out my first choice, I can hardly bear to think about my Dw being in one of those long hall places where all the residents sit in a wheel chair by the door. Not if I can help it!

I had written a long piece about my aunt who passed with Pd. My cousin made bad insurance choices so that there would be more money In the check but may aunt suffered from poor care choices from her son. He should have sold the farm, which he lost after she died. Or He should have signed up for the Choices plan, Medicaid in Tenn, but he did not because it contained the asset recovery clause.  Again He could have done one or the other but it cost them everything and poor care at home. It wouldn't have matter for him because he didn't give a darn*. I want my first choice and am I making a long term decision that could backfire sure, just remember the best laid plans of mice and men.

Now I want to address a lot of what Jo c said because it bears my attention. I do not know If I have been having a self defense reaction that is sound reasoning on your part. I do feel it makes me want to pick up with a resolve and get it done right. I believe in being humble, My mantra is Micah 6:8, He has shown you, O man, what is god. and what does the Lord require of you but to do justice and to love mercy and to walk humbly with your God?

I want to get to my question to you all. I am tired from writing,  I feel lost in this placement thing, and now more  gun shy from my experiences. I just want to back off but that isn't gonna get it done. I must say I must have misread some of the posts I've read, I thought it was the SW job and If I keep saying she can't come home he'd have to find something or stall till something opened. Like I said I feel lost. I won't not be offended If you give me advice, step by step instructions really I could use your help to go forward.

My plans and hope for my first choice rest upon a bed coming open, the SW did say she might squeak by on a snf thing? But there are no sn beds open as well.  By the way she is approved for the mc. They did assess her and she's a great fit, but maybe I need to look harder for a place that has a Medicaid placement after the money runs out. In case I die.

I feel like there may have been things I haven't addressed but I printed of the thread so I can get it done. Thanks all for listening. I appreciate everything that was written, it may be hard to hear but I know it's hard to write. I view this as a positive post because you all care. My prayers continue for you all Ed, M1, Day, Buggroo, DJnaz, and so on you all are going thru so much lately, my heart goes out to everyone here.

Just Bill

Hey TBE I read all your posts and it's obvious you are in pain. Everyone has offered very good advise as far as go or no go when it comes to a MC or SNF.  Another option you may want to consider is building a dementia room on your property. For a years worth of MC payments you could build quite a room or structure designed specifically around her needs. A big pillow room to sleep in, a huge walk in shower, entertainment area, everything safe and easy to clean, escape proof doors, camera's. $4800 a month buys a lot of construction materials. I am making no judgement whatsoever on your final decision, I am just humbly offering another potential option.

MaryG123

Tell us about your second choice with Medicaid option TBE, if there is one.  I’m thinking she might not mind it, and I’ll bet she would be concerned about your quality of life too if she could express it.

Joydean

TBE, my prayers are with you!  I feel your pain, I’m not there yet and when I think about, I can feel myself starting to stress even more than normal. I too am concerned about what if something should happen to me who will take care of my husband. None of this is the way we might have planned retirement. All of our plans and dreams are dashed to crap. But like you and others, I hold onto my faith. I know God said “I will never leave you nor forsake you.” Even when I feel so alone and am so scared, I know He sees and He is with me. 

Steward, I have no advice, but we are family, Christian family and I care for you and your sweet wife.  God be with you for strength and guidance. 

toolbeltexpert

Jb just wondering have you done this. I have skills, we've had a termite infestation that went to the second floor, I did all the repair work. Electricity no problems, I worked with 480 3 phase daily for 25 years. I did buy her a she shed late last year thinking it would be good for her. Zero Interest, nada, nothing. It got a new roof 2 coats of stain, bead board walls inside paneled ceiling. insulated, wired, ceiling fan, breaker panel I was gonna put in AC and heat in it but gave up when I saw her reaction. I had thought about taking a bedroom and doing the big walk in shower. Listen to the lyrics to, Its too late with your dementia glasses on wow changes everything

And it's too late, baby, now it's too late
Though we really did try to make it
Somethin' inside has died

And I can't hide and I just can't fake it

toolbeltexpert

Joyce thanks for all the times you remind me about God's faithfulness, Preaching and living are too different things. I haven't forgotten what He did for me. I don't deserve His grace, but He gives me so much. I hit my knees  a lot, today' s reading caused me to pray again, I know that what ever His will is, it will be so much better than I can imagine. Even now as I write and think of the things He's done in my life I am amazed. 

I will share a poem I wrote back in 2004.

I am amazed, 

At each days light,

How God can make feel!

Uplifted by the painted sky, 

so awesome and so real.

The birds that fly, 

Up in the sky,

They tell of how I feel.

Now what I do,

with each new day.

God let's me decide!

will do my best,

to spread His Light 

to those who are not filled?

Or will I let,

the world lead me,

to tell me How to feel?

I'll let Gods way,

lead my day, 

My work I've still to fill

And now the day,

Has come to end,

a Brillant sight I see.

The sun so bright,

Gives way to night

His sky still speaks to me.

The stars so bright,

they light the night,

they tell of how I feel.

My souls so High

It's in the sky.

THAT'S HOW GOD MAKE ME FEEL! 

I wrote half on my way to work, and half on the way home, I had to stop and write it came so quickly. In the morning my ride to work is driving east into the sunrise and West on the way home at night sometimes.The sunrise was an inspiration, I was praising God all the way in for such a beautiful sight.

Well now a few of you heard just a tiny bit of  my testimony. I should be praising all the time. I had to remember that poem from memory. I am so thankful for everybody here. Thanks Joyce.

dayn2nite2

The SW job is to identify facilities with open beds.  Any facility.  Not only facilities you have your heart set on.

How much time and energy will you have working 8 hours a day to visit your wife?  Plus commute time, making sure you have clean clothes, lunches for work AND maintaining the farm?

While you are admirably trying to provide a platinum facility for her, you are wearing yourself down and she gets less of you.  How is that fair to you both?

Look, sometimes choice #1 just can’t work.  What is the best Medicaid-possible option available?

Pat6177

TBE, I have not gone thru what you are going thru so I have no experience. But something to consider is looking for a Medicaid bed for now. That might be in a facility that you don’t like but is clean and safe. Then you will be able to get your financial ducks in a row without the time pressure that is making things worse right now. Once you have a sound financial plan, you get your DW on the waiting list for the best option that you can reasonably and responsibly afford. Hang in there and keep putting one foot in front of the other. Virtual hugs to you!

toolbeltexpert

Day. I have thought about that. If I work from my shop, my communte is 5 min walking. I stop when I want , I work at my pace. It worked up until late last year I had to spend more time with dw. I could be is full swing tomorrow. I have a 1000 motor waiting to be put back together. Some months I could make her keep and then some.

my number 1 with Medicaid. Oh and number two is the same nationally known box chain. It closed its memory care during covid and as of a month ago they hadn't  opened it. It isn't the same layout as my number 2 and also not as dimly lit either. I don't know the staff, but the admission person was kinda rude with me when I asked about the mc. She talked to me like I should have known it wasn't open. And I needed to get my Medicaid paper work done before I got ready. I know that's was a good suggestion, just they way she told me. I had a limited visitation with this unit, it was far from my parish but there was one lady who had kin from one of my charges. She had been in a NH most of her life. Had suffered from electroshock  therapy, Her family had been thru hell when she was a little girl. She knew the Bible better than some preachers. She said something I will never forget. (God goes many places and has many faces) I would sing hymnal songs with her, she told me it drove off the demons. I never could carry a tune, not even in a bucket.I really wonder what kinda hell she resided in. She never wanted me to leave. Well enough of that.

Well my 2nd choice with Medicaid also has no beds either. It has one dimly lit  central hall leading thru three wings. Remodeled hospital, but now is old and outdated, the ac units are in the wall style with frequent breakdowns when it's  hot.It has parking lot all around it. They have good activities, that was precovid and not sure if it is any good now. They had a little turnover and it was the good ole ones retiring, the ones that went beyond a job description for their charges. I still know their names, but some have retired. Oh this is the placed I visited a year ago, a good friend who had lost his dw and was recovering from a fall he had at the food ministry he volunteered at. Well it was covid. He was admitted and was quarantined because he was new. We meet him at his window and we could barely see him well the screen was loose so I slide it out of the way, the glass looked like it hadn't been cleaned since the day it was put. So i ran to the car and got some wet wipe and cleaned the window. Ahh now we could see each other. I caught hell from a nurse for moving the screen. I explained why and asked if she recognized me, she answer she thought I looked familiar. Yep I was the guy that visited there for 8 yrs. I took a picture of him thru the freshly cleaned window. He passed10 hrs after our visit. The family was so greatful I had visited him that afternoon. 

I haven't found a place that takes Medicaid that compares with 3700 a month Taj mahal. I would love to find one that even looked like my first choice. Maybe it's me but I had said for many years that if I had to go to a NH that's where I want to go meaning my first choice. Why should I want any less for her. She stayed beside me when she could have left me, I don't deserve such a good wife,  when I went from 45k a year to 9k she made it work. She supported my ministry when it was lean which was alway she went without so others could eat. I'll  quit because I could go on and on. I know she wouldn't  want to be a burden and neither would I but I know if she could she would do for me. Liven the dream! Sorry if I am negative about what I have encountered  its just they way it is.

I will keep looking and keep my mouth shut, and you know how hard that is for a preacher. Thanks day for listening to me ramble on.

Joydean

Steward. thank you for sharing your poem. I enjoyed reading it. Now I want you to read it and get that feeling back in your heart!  Your wife loves you and wants you to be happy and safe too. Take care. 

toolbeltexpert

Well after some sleep, and my mind is refreshed I have continued to examine what my actions regarding self sabotage, I may have been sabotaging to try and get my own way with my first choice. Not really sure If I was unconsciously doing it? But I absolutely want a sustainable plan, and Medicaid has to be a part of it I guess, in case I die. I know that Monday mornings are the best opportunity for a fresh opening. I am going to go over and see what the SW has. I don't not know why every facility that has Medicaid is either run down,old,dimly lit in this area. Is it that way every where? I will be speaking today with a nurse a county over who knows the places over there. I am gonna start another thread because I really need some solid advice about How it should go. I want my Dw placed this week and I really don't want to have to move her again if at all possible. Do not worry I am not gonna waffle on my choice. I have to say that all of the places not having beds is not helping me. And I am regaining my strength after be so sick from my stomach, and bm issues. 

Joydean I did get that feeling back as I was writing that poem and it has refreshed me more than anything. 

Ed I have done that before and usually I do that on a long post, I don't know what I might have swiped that caused it, but I am learning to do that as I go know.

Day2 your posts are very helpful, I understand what your saying about the SW wanting her to move on. 

Again thanks to you all.

Stewart

sandwichone123

Medicaid facilities seem cheaper because they are. Private patients pay more than Medicaid does, and facilities that accept Medicaid do the best the can with the income they have (minus corporate dues if applicable). They can still provide excellent care, but they have to cut costs somewhere.

Ed1937

The facility my wife was in was very nice. They accepted Medicaid for a certain number of beds.  It was clean, and the staff was great. If I had to put another LO in a facility, it would be that one.

But a facility doesn't have to look like the one my wife was in. My brother was in a facility that was old and outdated. But the care was good. That's the most important part.

Stuck in the middle

Stewart, they say you shouldn't pick your retirement home by the view, because you won't notice it after a month anyway.  I expect the same is true of your wife in her next home.  Please don't work yourself to death for a pretty facility that your wife won't appreciate.

You didn't devote your life to amassing money, and you cannot afford one of those country club facilities.  You also know that you don't need it.  One of my mother's favorite memories of my father was from when we were quite poor.  He said "I don't know anyone who has less than we do, and I don't know anyone who is happier."

I think you will be happier, and do more good (the two are related, for people like you), if you place your wife in a Medicaid facility and return to the ministry.  Let the young men do the wiring.