They are planning on sending her home

dayn2nite2

You are going to have to keep saying you cannot physically take care of her in her condition.  It is unsafe for her and for you.

Ask them if she qualifies for hospice now.

Hoot619

Jmlarue. Thank you I tried to get a hold of my Elder Attorney but only works til noon. I'll look up Adult Protective Services and call. I haven't felt so darn lost in this mess ever. I have her favorite blanket in dryer and when dry will bring it to her.

I did call her Doc and talked to the nurse. They don't have a thing to do with Jan anymore. Another Doc is in charge now.  I asked why they didn't call me Monday when they said they would. no answer I hung up.

I called Adult PP and somebody locally will call me back.  You got me off my butt again and got me to do something.   A big Thanks  I feel a load has been lifted. Hoot

Jo C.

Dear Hoot and Dear Everyone, when I read all of the input, my heart goes out to everyone.  The experiential stories are deep in feeling, and the kind outreach and support of everyone striving to help is truly touching. 

Hoot, I have contacted so many entities in regard to this specific problem issue with not many clear cut answers.  However; when I spoke to a Social Worker, (not in your area), she did state that every once in awhile they have a challenge such as this. The answer from her was that the patient cannot . . . repeat . . . cannot be discharged to an unsafe setting.  This we knew, but we were unsure of the outcome of what is in the future.  Basically, she said that in her professional experience where she is located, when they cannot gain a long term care bed for transfer, they must keep the patient at the hospital until they do find placement. She did mention a family member should not be manipulated into accepting the patient back home when they cannot provide safe and appropriate care.

Hospitals, for Medicare patients, are paid on a Diagnosis Related Group, (DRG) prospective payment method.   It is paid one flat fee for the admitting diagnosis as assigned for the entire hospital stay no matter how many services are required.   This is based on the diagnosis that caused the admission; not what happens afterward.  This is one reason hospitals are so proactive in moving those patients out.  I personally would not bring this up with anyone at the hospital, but this is the reason that hospital stays are shorter and patients sent out sicker and quicker.  However, hospitals are also penalized for early readmissions when they were discharged too quickly or unsafely.

One can stick to what is safe and appropriate.  You have health issues; you are elderly; you are unable to provide any care in the home which is 24/7 in needs, as it is UNSAFE; actually for the both of you. Mentioning maintaining your sobriety is also important; you are working very hard at that.  You do not have assets to pay for NH care privately, and Medicaid certainly does not pay for 24/7 care; it is not possible to safely provide the needs in the home environment.

Our brilliant Larue has some good input and it may well be worth looking into. 

It may be helpful to ask Tracy, if the inability to gain a transfer bed has been because of no beds being available, OR is the primary problem your wife's behavioral issues a barrier to her being accepted.  This at least gives you an idea of what the issue really is.  Hospital Discharge Planners usually have a good relationship with care facilities, perhaps she has a relationship she could use a little oomph with.  As said before, it no longer at this point matters whether it is Memory Care or Nursing Home level of care for transfer. In fact, she may have more care at the NH level since they are staffed better than MC is.

Putting her into Hospice right now is something that raises some questions. If she is Hospice, then she is no longer an acute level of care, so she may need to leave.  Personally, I would not do this unless and until Hospice has arranged for an accepted admission transfer to a NH for long term care.  (We do not know if your wife meets criteria for Hospice at this time.) 

Hang in there, you do not have to agree to accepting Jan into an unsafe environment and while we remember that Tracy is up to her eyeballs trying to make arrangements, that is her job.  If the dementia specialist can adjust treatment approach, it would be helpful, but that of course is up to the physicians on what they feel is approriate and safe for Jan.

You are doing your very, very best.  It will take a bit of time, but if Tracy diligently keeps on it, then that will bring results.  Sometimes even the staff doing the discharge planning has to keep calling the same facilities over and over and over until a bed is obtained.

Will keep my fingers crossed and hoping that all will soon be resolved.  Big hug to one and all, you are all awesome.

J.

Faith,Hope,Love

Hoot, I don't have anything to add to what everyone else has said.  But I'm praying for you and your DW.

dayn2nite2

Jo C is correct and I was not-putting her on hospice would probably have repercussions.  Just keep repeating that she and you would not be safe, you need to maintain your sobriety.

Joydean

Hoot, I’m praying for you and Jan. You and your wife have been through so very much. Prayers for strength and peace for you both. You can do this! You are a fighter and you are fighting for Jan too! 

Jo C.

Suddenly, I recalled an organization that deals with matters related to nursing homes and working towards reforms; CANHR.  They have people that work with all matters pertaining to NH issues and more.

The professional I spoke with confirmed the following; Medicare is a federal dynamic, they do not function differently or have different laws from state to state.   She did confirm that the patient may absolutely not be discharged into an unsafe setting, no matter how long it takes to find said care.  You have expressed to the hospital discharge staff why the home setting is unsafe and not appropriate.   She further stated that the patient will need to be kept at the hospital until arrangements have been made for safe and appropriate care which in this instance, means placement in a long term care facility.  When I asked how long a hospital would be expected to continue to care for the patient under such circumstances, she replied, "As long as it takes."

She mentioned putting the reasons in writing as to why home is not safe and appropriate, BUT personally,  would not put anything in writing unless an attorney screened it and gave input.   You can document for your own use the dates you spoke with Tracy or other Discharge Planning staff at the facility and in that include what you told them as for the reasons that home is not appropriate and safe for the level of care your wife requires and what transpired in the conversation.  I do that sort of journaling under problematic circumstances.

There are so many reasons home is unsafe; and you have had multiple interactions with the discharge planning staff.  Jot them all down and then keep that log at home.  Hopefully you will never have to produce it, but it is good to know who you spoke with, when and what was said just in case you ever need it.  If you have any business with an elder law attorney at this point, OR; you recently saw that attorney in Marquette, you could contact him/her and ask for guidance or even a letter regarding your problem issue to provide to the hospital if necessary.  Up to you.

I think that this will turn out alright; take good care of you and treat yourself to one of those good books and some indulgent snacks and tuck yourself in comfy and cozy.  Little things mean a lot.

Now; if you can keep that cool canine from trying to do the laundry or make the bed, that would be a plus.  Dishes and rug washing - my goodness, he is such an active fellow.

J.

Hoot619

Thanks again everybody and Jo C. After reading these I feel better. At my meeting tonight one of us said that his Grandmother has Alz and  his mother and her sister still haven't figured out what is going on. 

  Accepting what is happening is hard for some of us. Going backwards in time but still in a adult body, it is rough on all of us.  Hoot  I'm shutting down for the night

Hoot619

Jo C , I had to put this in here I picked up 10 Pasties at the Church today. I can remember a few years ago making them for deer season with Jan and grandson Jon ,I think we made 20 some. The ones we have bought in Marquette just aren't the same. But season them up add de ketchup and some hot pepper flakes and a feast for a Finn.

I doing a lot better now, Tracy told daughter that this now is costing me some money.  Worry about that later.  Will call Elder Attorney Monday for advice also thanks for yesterdays' post at 5:31.     Hoot

jmlarue

I thought Medicaid would kick in for the hospitalization. Is she not yet approved for Medicaid? It might even get covered retroactively.

Hoot619

She is approved for medicaid just have to find a place for her. The phone call to Elder Attorney will let me know a lot more. He should know what I should or they have to do. No sense for me to worry I can't control what is happening.  Now if I could do that I would feel better. Hoot

Jo C.

Off Topic:  Hoot, you got pasties!   Oh my; I can almost smell them coming out of the oven .   I no longer make them as my knees are shot and it is quite a lengthy endeavor in the kitchen to make them; but oh - they are so good and smell like home. And you bet; they do need ketchup. 

There is a pasty shop the next county over, we bought some, and . . . . ick.  The initial fellow who owned the shop was from the UP and he made great pasties.  However, he eventually sold the shop and some men bought it who never have been out of SoCal. First thing they did was to use pre-made icky sticky greasy crust mix, and then horrors; they made them with cheap hamburger to cut costs to increase profit.  EEEEK!  Talk about salty, DH and I could not drink enough water after having eaten them.   No way would my mother or grandmother or myself make pasties with hamburger.  We always put a small amount of rutabaga in with the potatoes, onion, beef, etc..

The house smelled so good as they baked.  My aunt used to make 20 or 30 of them at a time We always made good sized large ones; not teensy sissy ones.  They do freeze well.  My grandfather worked in the iron ore mines and the family would bring pasties to the miners  at mealtime back in the day.  Sadly, he eventually was killed in a mining accident. 

So, we face a pasty deficit out here.   When we would visit family in the UP, we always went and got pasties.  There used to be a pasty shop near Champion Beach; Van Riper State Park as it used to be known by either name, initially they were really good, but I understand they too have lost out the quality they used to have.

Thanks for the pasty memories, enjoy yours and don't forget the ketchup!

J.

toolbeltexpert

Hoot and Jo C you should have put a disclaimer out about patsy. I had no idea now I need something to catch my saliva, I looked them up from the up. Now I am hungry. They look so good.

Hoot619

And some people put gravy on them, never even heard of that years  ago. I sure don't. Organizations sell them to raise money for hockey teams, winter heat programs. Takes a lot of people to do it right, from making the pasty dough , to cutting the vegetables, rolling out the dough and cutting into the right sized rounds.  Mixing the meat-vegetables seasoning it and then putting it together. And to make you all feel good I'm having one for supper.  You have to have a good dough for pasty and good ingredients. They are a lot of work BUT if you ever had one it is sure worth it. I'm hoping that just before deer season some org. makes some to sell. I'll buy 20 they feeze good and you can't beat them for blind food.Well enough of that.

Hoot619

Jennifer and I went and saw Jan, she was awake hadn't eaten or drank anything. We tried to give her some jello didn't work. She took a very small sip of pepsi, when she tried again she just couldn't suck it up.

They are treating her rash infection with the same stuff I was using some antibodics by injection.

Nurse came in saying she needs hospice care at home-daughter and I let her know it is impossible for me to do it. I let her know I couldn't do it and I was at the point of tears coming down and she was compassionate enough to back off.

This  is the 1st time she wasn't yelling ,did whimper a little but not much.    My wife being a way from  home helps but the same problems are there. I still worry about her and the worse part is I can't fix it  All I can do  let the One over us all handle it. I wish I could remember that. Hoot

Hoot619

We called Elder office and talked to one that knows quite a bit, she ended up calling Tracy and talking to her. Tracy explained what is happening at MCF , most are short on help and when a vacancy comes up they get real picky on type of patient they want. Jennifer will be calling places down state and when I see or call Tracy to see how far West and North the places she called. My feeling is, she will be in hospital here til she passes .

I went to see her, she was awake but started to get upset, I left She still hasn't eaten or drank anything that I know of.  Just hope and pray the Good Lord takes her I don't want her to suffer anymore.  Hoot

jmlarue

I'm so sorry, Hoot. Given that Jan is not eating or drinking, you're gut feeling that she will spend her last days in the hospital is probably right. My MIL stopped eating and drinking at the end of her 12 year journey with ALZ. Amazingly, she carried on for almost 3 weeks without food or water, but didn't seem to suffer from hunger or thirst. We were all so grateful when she passed peacefully. It helped to have those quiet moments just being with her in those final days where she was no longer tormented by the demons and we were no longer stressed by the 24/7 care of her in that state. This has been such a hard journey for you. It's wonderful that you and your daughter have one another and a strong faith in a higher power to support you. My thoughts and prayers will be with you.

60 falcon

I don't remember if Jan has a palliative care doctor assigned to her at the hospital, if not I recommend you request one. 

The palliative care doc that my wife had while she was in the hospital treated her the same as hospice would have.  He made sure that all necessary comfort meds were available whenever they were needed. He was actually the most helpful and compassionate doctor my wife had over the years with this disease.  It was a big help and comfort to both me and my wife.

Jo C.

Dear Hoot, when one's LO reaches this point, hard decisions must be made.   It may be time to discuss this with your adult children, but the final decisions will be yours.

A Palliative Care physician could be a plus, but "up there" where you are, it is possible that Palliative Care may not be available; however, one can ask.  When in Palliative Care, one can continue to have care delivered at the acute hospital whereas Hospice patients do not unless there is a significant problem Hospice cannot handle which happens rarely.

Decisions will be, since she is not eating or drinking, you may be asked whether or not IV fluids would be wanted.  Or; the attending MD may order an IV - if that is done, and it is not a life sustaining choice the family has made, then you can speak to the doctor and let him/her know that the family has chosen no extraordinary or life sustaining measures are desired and that includes IV hydration. 

Unless you have already opted for the choice, you would want to decide whether or not you wish her to be a "DNR," Do Not Resuscitate, if  she stops breathing, and only comfort measures are desired such as relief from pain. 

These can be uncomfortable decisions to make; but in these difficult decisions, the family will be able to decide which choices are kindest and most lovingly appropriate for their Loved One under the dire circumstances.

If one decides against extraordinary life sustaining measures, it may be possible that you may once again be asked to take her home on Hospice; in this situation, you may decide to tell them once again that approach is not appropriate as you cannot provide the necessary care and that placement continues to be the only choice.  If they do find a bed at a NH, then ask for Hospice to step in when she transfers; they can do that from day one.  However; as you have mentioned, the possibility may be that Jan's end of life may be at the hospital she is now in.

You continue to do your very best and that is all any of us can do under such circumstances; many of us have "been there," and we understand. We are here and will be thinking of you, Jan, and your family,

J.

Crushed

Hoot619 wrote:

Jo C , I had to put this in here I picked up 10 Pasties at the Church today.

wow must be some Church!!! 

Pasties (singular pasty or pastie) are patches that cover a person's nipples and areolae, typically affixed with adhesive. Though they are commonly associated with strippers, burlesque shows and erotic entertainment, they are also, at times, worn as an undergarment, beachwear, or as a form of protest during women's rights events such as Go Topless Day to avoid potential prosecution under indecency laws.

https://en.wikipedia.org/wiki/Pasties

 
Could not resist   As you all know My work includes taxonomy in safety regulation.   

toolbeltexpert

Hoot just want to let you know I am praying for you.

Hoot619

 Crushed, I'm not that old only 80 and I like our spelling better.

Toolbelt, Thanks she needs it.

Jo C  We have DNR and they know it.  I'll call on IV, we don't want that I'm sad to say she has suffered enough and she wouldn't want it either. darn* it, it is real hard for me take the way she is.

My son called yesterday , he is going to drag me  to go out fishing. I'll be there a half hour early so he can't forget me.  It sure helps to take my mind off what has been going on.

Thanks all, your concern is greatly appreciated. Hoot

[Deleted User]

The user and all related content has been deleted.

Hoot619

I stopped in to see her and Tracy asked to talk to me. She has tried over 20 places.  I asked about IV and they had one in her I told Tracy to pull it, she said she will notify the Doc. I just hope she passes quickly and that what she would want. She was sleeping and I didn't disturb her but did put black bear on top of her blanket. 

Called my daughter and she will be back up tomorrow.  I'm ok with the decision to let her go, but I know I will miss her very much. Hoot

Faith,Hope,Love

Hoot, I'm praying for you and your family.

MaryG123

Dear Hoot,

I’ve had two loved ones who stopped eating and drinking, a good friend and my mother, and both passed very peacefully when intravenous therapy was stopped.  I hope for the same for your wife.  

Ed1937

Hoot, I 'm so sorry. Three months ago I told them to let my wife go. When I just read your post, I cried for you. I wish you strength in the coming days.

jfkoc

I hope you will be able to bring Hospice on board.

Joydean

Hoot, praying for you and your family. Asking for strength and peace for all of you. 

toolbeltexpert

Hoot I am praying for you and your family. God put you all in our lives via the internet so that makes you part of my family and when one member hurts we all hurt. Sending you hugs