Respite Day 2 of Five

LadyTexan

The skilled nursing facility (SNF) picked up DH yesterday at 9:30 am. He will stay at the SNF until Monday morning.

I encountered a couple of hiccups along the way. The first challenge was making the decision to take advantage of the hospice provided respite. The second challenge was getting DH into the facility I preferred. The facility wanted all of our financial information to determine if we could afford the facility after the 5 day respite. But no one at the facility relayed this request to me. 

When the hospice company advised me that the SNF needed financial info, I contacted SNF. IMHO the SNF was asking for something that was not a condition of the respite and it was annoying. After a couple of discussions with SNF's admissions and the business office, I provided them with financial information and then asked the hospice director to kindly inform the SNF that my financial condition was not a requirement for the respite. This was all happening between 3:30 pm and 5:00 pm Tuesday. The SNF finally got the message and agreed to pick up DH Wednesday at 9:30 am.

When we arrived at the SNF, the hospice nurses were getting DH settled. The SNF nurse assigned to DH started hurling paperwork at me to sign here and sign here. I warned her, that I am a reader and planned on reading the documents. This did not thrill the nurse at all. I told the nurse DH had not had his morning meds yet. I also told the assistant director of nursing that DH had not had his meds yet. When I visited the facility in the afternoon, I learned that DH was not given his morning meds because he "should have gotten them before he came to the facility". Well that would have been helpful information that should have been provided to me. Regardless, I was very clear when he arrived he had not had the meds yet so I was dumbfounded that they were not administered by the SNF.

At this point, I am very antsy about what are the rules at the SNF. What are their expectations of me. What are my expectations of them. I keep getting passed around from one staff member to another. Finally admissions provides me with the 40 page admission handbook. IMHO there was no reason for this to be such a challenging situation. As you know I can be fierce when it comes to my DH's care. My worry is that I am coming across as assertive to the point that it will impact DH's care.

LadyTexan

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Heartache I did not expect. When DH was wheeled out of the house to be transferred to the transport van. He was slumped over in the transport chair with a blanket wrapped around him. He looked old and frail and miserable. Likewise when we was wheeled into the SNF and tucked into his bed. Seeing him laying in the facility bed alone was hard for me. Of course I wish Hap was there to comfort him. Alas, Hap does not have the training or social graces to visit the SNF. I took more clothes to DH in the afternoon. Again, seeing DH alone in the SNF bed was hurting my heart because he looked so frail, so alone, so lifeless. When DH stirred, he was angry at me. The hospice nurse reminded me that he was angry at me when he was at home, so this is nothing new.

Bureaucracy I expected but am still annoyed by. DH often gets sideways in his bed. He hangs his feet over the side of the bed. In the past, I have respositioned him several times during the night. I requested bedrails on DH's bed. I'm not sure if its a Texas thing or everywhere thing, but bedrails are considered restraints and require special approval by the facility's Director of Nursing along with an assessment by the occupational therapist. Argh! The required approvals finally happened, but was it just another annoyance.

abc123

Oh good grief! I would have been in tears over everything you mentioned. I have heard about the bed rails being considered restraints and IMHO that's ridiculous. To me it's a safety measure. I'm sorry you had to go thru this. Recently it seems as if every little thing is taken way over board. People don't communicate any more. I hope your DH will get over his anger and you will be able to relax.

LadyTexan

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The importance of engaging an elder law attorney - In 2019 I engaged an elder law attorney to ensure DH and I had the legal documents we needed for the journey we were beginning and to get Medicaid planning guidance. The attorney prepared updated legal documents and educated me on exempt assets, income limits and asset limits when applying for Medicaid. As I stated in the original post, late Tuesday afternoon, the SNF's business manager wanted our financial information to ensure we could afford the facility after the 5 day respite was over. 

Like many others on this journey Medicaid will likely be our life raft. So the business manager was asking me the questions on the Medicaid questionnaire which I suspect is a canned questionnaire developed by the State of Texas HHS. As I am answering the questions, the business manager is telling me our combined income is over the Medicaid limit and we will NOT qualify for Medicaid. Additionally, she states that we will be penalized for selling a house in the last 5 years and selling a car in the last 5 years. She was using general terms like "we" and "they" and I had to get her to specify who is "we" and who is "they". 

Thanks to the advice I received on this forum, I am not relying on the SNF's business manager for the final say on Medicaid rules and requirements. The attorney I engaged in 2019 promptly replied to my frazzled email about the SNF's business manager's confusing Medicaid information (which was likely incorrect). I am so grateful I established a business relationship in 2019, so I had someone to call upon as we approach applying for Medicaid.

Yes, I have gratitude, for so many things, including:

• You all are my heroes and continue to hold me up as I travel this journey. 
• DH is safe and clean and well fed.
• I am getting a respite break because DH is now on Hospice.
• My faith is strong.

Jeff86

LT, you are a remarkable exemplar of patience and persistence.   

I hope the next couple of days are vastly easier—it strikes me in reading your posts that this so called respite has engendered rather than relieved stress.  May things be easier from this point on.

You are a tower of strength.  I’m proud to be a member of your large fan club!

Quilting brings calm

I think she’s confused on  the 5 year thing.  I don’t think it’s the sale  of the assets that is necessarily a problem.  It’s what you did with the proceeds.   As long as you can prove you used the money for yourselves and didn’t give away ‘large’ sums of money, then I think the sales are fine.  That’s why the bank  statements are important.

What is her insistence on discussing this now?  Do people abandon relatives in for respite at the end of the 5 days rather than go the admittance process at that point if they want to continue at the facility? 

Pat6177

LT, thank you for taking the time to let us know how you’re doing. I learn so much from you. I’m sorry about the hassles you’ve encountered. But I hope you get a couple of nights of solid sleep and get to sit and enjoy a hot cup of coffee, right to the last drop!

Lynne D

How frustrating, on top of all of the emotion you are dealing with. I hope the next few days bring you peace!

Jo C.

What an emotionally trying time; I am so very sorry. You had no way to know how this would transpire; things were missed.  It seems that Hospice should have made all the pre-arrangements with Admitting, etc. to specifically address the absolute ending date of the five day respite stay and ensure you were not going to be hassled for intake for ongoing care as much as possible.

Nursing Homes do not have in-house pharmacies to have meds on hand for new patients.  They needed orders from Hospice Licensed Nurse approved by the Hospice Doctor (easily done), for necessary meds . . . the NH would then send them to the pharmacy company they use.  It can take a day to get the meds filled; sometimes if necessity exists, they can get the meds in a shorter amount of time/

AND. . . Hospice should have recommended to you that the current  meds be given for the time he was admitted, AND there may have been a way for them to gain NH approval for you to provide the meds from home as long as they were in their labeled prescription bottles; they could have had the Hospice doctor order that with them transcribing said order.  You had no way to know any of this; it is a new experience.

The NH wanting financial information from you was to protect themselves should the family suddenly decide to continue the patient in the NH after the five respite days; many families do that. This is to protect themselves so they do not end up with bad debts from non-payment.  Hospice should have prepared you OR made arrangements with the NH that you not be met with that until a day or two had passed after admitting since these days are covered.

NOTE:  Your income being too high for Medicaid Long Term Care but not high enough to afford to pay for Long Term Care should not be an issue - Texas permits Qualified Income Trusts - also called, Miller Trusts.   Your husband's (not yours) income in his name only would go into a special Trust only to pay for the NH. When the bill from the NH comes in each month, the money is paid out of the Trust as the Share of Costs and Medicaid picks up the rest of the shortfall.  Here is a link describing that and it lists Texas as having that benefit:

https://www.medicaidplanningassistance.org/miller-trusts/#:~:text=Neither%20of%20these%20states%20permit,counting%20towards%20Medicaid's%20income%20limit.

Not to worry about selling the house and the car . . . those things are done.  It is about what is done with the proceeds from those sales . . . basically, if a new house was bought to live in, or other needs were addressed or if the money is in the bank, that should not cause problem issues. You did not gift the money away or hide it.   NEVER take advice from a non-professional re this.  Good you have an attorney to ask questions of.

This is a very emotional time; you want the best care for your DH and do not want him to be overlooked in his care. Let the nurse on the unit know his routine and what is upsetting to him and what calms him.  I found it a positive to write out a list of such concrete matters for the RN on the unit to have it made part of the patient plan of care for the staff.   I had copies for NHs and acute care hospitals - we were frequent fliers at both.

These five days will go fast.  I so hope you can find some hours in the three remaining days to get a bit of rest to recoup energy for when he returns to home if that is your decision.  If the decision is made for him to continue in NH care for a time, that can be addressed later at the end of the five days.  If you have a months deposit that can be made, that makes things even easier.  IF a person qualifies for Long Term Medicaid, then they will pay retroactively usually up to three months and the deposit is returned to the family.  In most states, that deposit return often goes up to three months of deposits.  Your atty can inform you as well as can the Medicaid Long Term Care case workers that can be reached by phone.

As for the bedrail issue, have Hospice manage that for you with their doctors ordering it; you should not have to deal with that.  No matter how short a time or long a time your husband will spend at the NH, Hospice can follow him there and it would be good to have them be very interactive in getting things managed until all is in place and even then to continue to be proactive in oversight.  This is NOT respite care for Hospice, it is for you and they should be proactively working for you and your DH.

Let us know how you are and how things are going.   He is not abandoned; respite is to get you some hours to try and rest or take care of your own neglected personal needs - sure hope you can get some "me" time. 

Thinking of you and so hoping for the best,

J.

Beachfan

Lady Texan, 

I am sorry the start of your respite was so confusing and frustrating.  5 days will pass in the blink of an eye and to have had all those cobwebs in your head at the start is not helpful at all.  I have no solutions, only this advice: please take Sunday all to yourself.  Do nothing with or for DH; take 24 hours exclusively for you.  It is not being selfish, it is not unkind to DH; it’s one day of your life to reclaim.  You will be back in the trenches soon enough.  Pamper yourself, you deserve it.  Thinking of you.  

toolbeltexpert

Lt sounds like a lot of stuff, hope you can get some time for you now. Just want you to know I am praying for you each morning

Joydean

Lady I too hope and pray you get a little time just for yourself. If nothing more than sleeping a full 8 or more hours, then having a nice hot cup of coffee! God bless you.

David J

LT-

I am continuously amazed at your strength and fortitude.  Putting my wife in the MCF for respite was an eye opener. She and I both were less stressed and in better health. We both wete better off. I made it permanent before the official end of respite. For us, it was the he best thing. I can’t offer anything else but my respect and good wishes.  

Cynbar

I am a longtime hospice social worker (in addition to caring for DH with dementia --- yikes!). I have arranged many a respite, and I have NEVER had a SNF harass the family for financial information, unless the plan was always for placement after respite. The hospice team is still running the show for their respite patients, and they should be the intermediaries between the SNF staff and the family. It is up to the hospice social worker to determine and be clear with everyone about the long term plan ---- and I have never had a patient unexpectedly abandoned by the family after respite. The SNFs that we work with have confidence in us to do our jobs and communicate clearly. If I were you, I would have a little talk with your hospice MSW about how you were treated. 

Jo C is exactly right, you can't count on meds to be available for every patient as soon as they arrive. It takes a little time to get the necessary orders written and signed, and some of this cannot be done until the patient actually enters the facility. But again, the hospice staff should have gone over this with you. And they should still be your primary contacts for any concerns, your DH is still their patient.

Try and relax and enjoy your respite, there is a clear benefit to taking this time to recharge. Let the hospice staff and the SNF staff handle things, your DH should be just fine, even if things aren't done the same way you do them. You've certainly earned this break and you deserve it!

Jo C.

Thinking of you, Lady T.

J.

abc123

Thinking of you and hoping things are much better today.

Quilting brings calm

LT-  I suspect you’ve taken a few well deserved days off this forum as part of your respite.  When you get back, let us know if you managed to rest and enjoy your respite or if it continued  to be frustrating.