Hospital to long term care...so hard!

Trish F

My DH has been in the hospital for close to two weeks for his rapid deterioration physically and mentally due to dementia.  It's been a grueling process for both of us.  DH still has no understanding about his dementia.

Thank goodness my state (KS) has protections in place for spouses regarding finances; however, I'm still waiting on details.  The hospital is working with me to get my DH covered by Medicaid.  All of this is so overwhelming, but I have my adult kids, their spouses and my DH's care team by my side.  I'm leaning on all heavily and feel I'm getting good advice and guidance.

Over the last couple of weeks, I've learned I'm a trigger for DH's agitation and because of this haven't been able to visit much.  I understand it's in his best interest, but it's awful for me.  He doesn't get angry with me, he simply knows he wants to be at home and not at the hospital.  I'm trying to think rationally and with him being calmer, it is better for him.

I'm holding good thoughts that we can find a good and caring facility for him that is nearby. Since we don't have money, we are at the mercy of Medicaid.

Honestly, I'm don't expect responses, I'm just feeling so overwhelmed and know so many of you will understand.

Ed1937

Trish, I'm sorry. One thing I'd like to say about this is that if the hospital (or anyone else) tells you that you are responsible, and have to get rid of some assets, you should probably see a CELA (certified elder law attorney) at least once before you let them steer you down the wrong road. The first visit will probably be free of charge, but verify that when making an appointment. You will not be sorry you spent the time there. And be sure not to sign contracts without legal advice.

Trish F

This is great advice and I've actually already been in touch with our elder care attorney - luckily because of our (lack of) income, there is no charge.  

Thank you for taking time to pass this information along!

Jo C.

Dear Trish; I am sorry for what is happening and can well understand your having to step back a little; you are very wise in understanding the need for that.  It is great that you have such supportive family.

Know that we will be thinking of you and we truly do care.

J.

Trish F

Thank you for your kind words...such a lonely time!

Katy sue

Hello Trish

So sorry you are having to go through such a challenging time. 

This is exactly the same scenario I had with my husband. So glad you are in touch with a CELA. One suggestion I might pass along is that when you sign papers at the nursing home that Medicaid chooses for him, be sure to get instructions from the lawyer on how to sign those papers. Wording at those facilities is very tricky. Some law offices even allow a lawyers assistant to be present when you sign. I was a holy mess when I signed due to lack of sleep, stress, pressure. My son was with me because I couldn’t even drive I was so overcome with emotion. Please reach out for help from others whom you trust. Medicaid can be deceitful and tricky with lots of inside pressure. It is vitally important that you know this. Do not trust anything they say or anyone who works for them or with them including hospital staff. Please redirect all info and paperwork to your lawyer. 

My DH was placed an hour away from our home. It was a grueling 1 1/2 yr in a nursing home before he passed. He was in stage 7 the entire time with AD and Parkinson’s. I dealt with it the best way I could with the cards I was given. It was a blessing he finally passed.

Blessings to you as you find your strength.

Jane Smith

Trish,

This must be very difficult for you, a lot to take in, and of course a huge and difficult adjustment. 

My mother went from what we thought would be a quick trip to the ER, to a stay in GeriPsych, directly to a facility. I remember how hard it was to wrap my head around the idea that she would not be going home from the hospital. 

But what was hard for me, was actually better for her. It was much easier for her to transition from the hospital (she had no idea she was in GeriPsych, she just thought it was a regular hospital stay) to the facility without going back to her home first, which would have been unsettling at best, and frankly, I’m not sure we would ever have gotten her the care she so desperately needed any other way.  (It was really, really bad.). Of course this may not be true in your case.

You have had lots of good advice above and I’m glad Katy Sue chimed in about the paperwork and being so very careful about what you sign and how. I had my mom’s lawyer look over everything before I signed it and in fact there was paperwork I refused to sign and other paperwork we amended. (The facility accepted her anyway.)

Something else I ran into was changing information from the hospital social worker about my mother’s discharge date.  We went from, she will need to be here much longer, no hurry to find a facility, to, we plan to discharge her tomorrow, what facilities have you chosen?  It was a shock.  What you need to know is that unless there is a suitable facility ready to accept your husband, the hospital can not discharge him as long as you refuse to accept the discharge.  They may pressure you to discharge him home.  BE FIRM and do not accept this or agree to it.   It was not easy for me to tell the social worker this but as soon as they understood I was not going to budge, they backed off.  Don’t let them pressure you into a situation that is not right for your husband.

Waiting to find out what will happen is hard and of course you’ve had more than your fair share of stress.  I hope you are able to look after yourself as much as possible:  rest, good nutrition, plenty of water, fresh air, and whatever else works for you to cope or distract yourself. 

Katy sue

I agree with Jane regarding the discharge info. There is a LOT of pressure from the social worker and hospital administration to discharge immediately. This is where the lawyer should help you out. No one else knows about all of these cutthroat antics until you have been down the Medicaid road personally. Hold fast to your decision to not discharge until they have found a facility for him. He cannot go home. If he does and you allow the discharge, the case is closed and you will have to start all over again with everything. 

The “suitable “ facility can mean anything. It’s all about anyplace that will ACCEPT him. They expected me to do the footwork and find a place. It is their job. I was so distraught over the crisis. So I hired a placing agency. They put out over 50 applications in facilities. Because of behavioral problems, he was turned down, even though he was highly medicated, they still would not acccept. Only one place accepted. It was not the best by far, but was the only solution and I had to accept at that point because they had legally found a place. 

It was still better than taking him home because I physically could not care for him or afford caregivers, nor could I possibly continue to work. 

Let us know what happens as we all do care.

jfkoc

then how about a big viral hug!