The Medicaid approval for Dado just was cleared today, he has been in the hospital for 3 weeks. Now there is a new glitch.
Medicaid specialist said they need to know WHERE we want him placed now. Well, I talked to two Life Care facilities on the island, they are the only ones with 'lock down" units. The WILL NOT ACCEPT him because he needs "one on one" care, due to his falling mainly. She said he may be able to go there when he is in a different phase.
I am kind of sitting here in shock right now, though, in some way this has really justified all that I have done , the one that assessed him said she could not believe I was taking care of him at home. So now...I just talked to the people at the hospital, and they asked if I wanted to bring him home!!!??? I said good God I would be dead within a week if we have to go backwards.
His sisters are coming from the other island this weekend to see him. I am pretty much over my fear of them, especially after all that has transpired today.
So that's it. I hope to hear more today on what to do, from the hospital team. They are supposed to have a long term care ward, but I was also told they do not do "one on one" there.
this may be a typical case of waiting too long?
Otherwise, I am adjusting , having less panic attacks, finally getting rid of my lung infection. He, is spiraling down. I drive over there every second day and spend the whole day with him, and see changes. Even his eyes seem to flutter.
Coco, is Dado in a wheelchair? That should take care of his falling problem in the nursing home. If he's in a wheelchair, he wouldn't need one on one care, would he? I noticed that they would have a tray on some of the wheelchairs so they wouldn't try to get up. I was lucky. DH never tried to get out of wheelchair and they didn't have a lock down unit. Alzheimer patients weren't separated from the others.
Coco: Glad to hear of your good news? Now for the bad news...many on here might not agree with me, however not only Dado's welfare is at risk so is yours. Have you spoken to them about using some type of mild sedative that would keep him in bed. If he had pain they could give him a sedative, well why can't they do that to keep him in bed because of his falling, thus preventing pain to himself and probably others. This makes no sense to me. It sounds more like an excuse. I certainly would point this out to them. They try and prevent alot of problems in hospitals, etc. by sedating the person....thus no need for one-on-one care.
When Jim was trying everything to get out of bed, I did not hesitate in using the medications Hospice had provided to keep him calm and in bed. At the very least if there is no where to place him I certainly would insist that you be allowed to give him sedation to keep him in bed. I can't imagine how you can take him home. He can't be the only one that requires one-on-one care...You know that there is not a nurse sitting in his room when you aren't there and he probably stays in bed. Ask them what he does when you are not there...or more importantly....What they do???
Coco--BREATH-----it will work out,just tell them NO way can he go home! And DO NOT let the sisters get to you.Wish I could be there -I would give them a piece of my mind!!!!! Love you.......
deep breath in.....hak hak cough cough I am so sick of this coughing...!!
I am ok, and in fact, very very grateful that the Medicaid has come through. I have been on the phone all day talking to places and peoples and officials, because if WE don't, it does not get done.
I will NOT take him home, more and more I see that I was really taking on too much. Maybe, later, I can, but not yet.
Thanks for the awesome support and I should know more tomorrow. I actually laughed hard today with a friend on Facetime, it felt so good.
Coco, just a point of reference for you. Here in NJ most assisted living places will NOT take a person if they require a 2 person transfer from bed to chair or chair to bath and may require the family to hire a private aide for one on one care /supervision. Also NH's here (and I assume most places) cannot physically restrain a person and now many of them will no longer administer "chemicall restraints", ie meds to keep them drugged, because of all the bad past practices and legislation regarding patients rights.
You raise a valid point - I've been advised not to wait too long to place dh because a facility would take him at this stage and as he declines while in their care they are more likely to keep him. Trying to place him as he develops more problems will become harder and harder to find a facility which will accept him.
Stand your ground and do not let them send him home-you can no longer care for your dear Dado and you recognize that. I agree with JudithKB*, certainly he can't be the only one with the falling problem...how do they handle the others in that situation? Be strong and continue your fight. I know it's exhausting to try to find all the resources but you will and both you and Dado will be in a safe place. ((((HUGS))))
we are still waiting to find a place that will take him. If he was not so active, getting up and down they would do it.
This brings me to your comments Judith KB, I meant to tell you I appreciate and listen intently to all you say. Yes, it is crushing for me to think we will have to sedate him, to keep him "down" However, as long as he is able to stand up, they consider him "one on one" Yesterday when I visited him, he seemed more aware mentally, (just one of those days), however his walking was almost nil, if he did not have the walker to grab when he finally gets up, he would go down. then, when he does use it, he pushes it away ahead of himself, even though it helps we still need to assist him. Bathroom issues are difficult.
And Carolyn, thank you for the wheelchair suggestion. Honestly , I think the bigger centers do not want to take him , because he is a Medicaid case and they make less money.
Sisters arrive in town today and will see him, and then they have an appt. with our wonderful VA nurse. She is great, she knows all my issues with them, and has been on our team for 2 years with home visits once or twice a month.
Tomorrow I have a family meeting with them. Despite the fact that I know 2 out of the four despise me, largely just because I am haole, (white), I am strong, ready to get it over with.
As we had a good day yesterday, I starting feeling sad that I could not bring him home. But I was reading on one of these other threads that WE KNOW< it will only get worse. And I was almost feeling like dying myself when all that was happening.
Despite the emotional pain of missing him, I do have a large sense of relief that things seem to be moving, a bit.
Coco, glad to hear that you are feeling some relief after all you have been though with Dado. I do hope that your family meeting with the sisters goes well. Just remember you can't please ever one. Yes, they are his sisters, but you are his dear wife who has stood by Dado day in day out. It's easy to criticize someone when you have no idea what they have done ...hope their rude remarks are like wet off a ducks back.
Other people have mentioned elsewhere that by refusing to take him home this put the onus on the hospital to find a place for him. Make sure that they are working on it.
first off, bak is so on my heart and mind, I cannot wait to hear a sassy word from you dearest friend.
I had my meeting with the sisters and I felt your behind me Betty, and it made me strong. It is over, the VA nurse had a meeting with them, and they are not talking about spiritual possession anymore, but are now experts on Lewy bodies, Parkinsonian types, and parroting. Good, as long as they listened to SOMEONE< (not me) Then, we all sat with him in his room, he has taken a real downturn this past couple of days. He can barely walk, it cannot be the meds as they have not changed anything and he has a fairly low dose of seroquel.
They flew back to Maui today, I am now over my fear of stupid phonecalls and judgements, and it seems EVERYONE is behind. Now, I can just concentrate on him, and me.
There will be some assessments tomorrow is what I hear, and I hope deeply for a resolution. He needs to be somewhere where he has more entertainment.
As for me, maybe now I can heal from this horrible lung infection. I am home until Tuesday when I go back to see him. I hurt deeply, but, I will make it.
Coco...Aren't you so glad the "others" got to talk with the right people. What blessing for you that is and hope they keep it in their wee little heads for awhile. So sorry to hear that Dado is still going down hill. But, if they can't level off and stay within a certain stage that is tolerable then it is better that they slide down and out. Sorry to say that, but that is how I feel. WE then have to think what "living" is about and what Dado is going through right not isn't "living". I know just how you are feeling...one minute "well good..that sounds great"..then the next minute..."Oh my how can I handle this and go through this". You can do it you are one strong lady...you will come out the other side of this with more understanding of what is important and you will endure...trust me on this. It isn't easy...but, we here all have you in our prayers and are here day and night when you need us. Losing Jim in the way it happened was one of the most rewarding experiences in my life. That may sound strange to some, but I know he is in a better place and I know I am a better person having loved him, cared for him and was with him until the end. This isn't always possible for everyone and many are too frightened. It certainly is a personal choice and all choices should be respected.
Your physical health is so important so be sure and take care of yourself....Dado still needs you and he needs a healthy you. Get some rest the next few days and you couldn't be living in a better place to find some peaceful moments.
JudithKB* , I totally have followed and understood, your journey with Jim. I really hope, that there will be a time when I can bring my sweetie home. The VA has said they will help me with hospital bed and hook me up with hospice. Time will tell. My heart is with him, all the way, every moment. He looks like an innocent little lost boy. I personally, sadly, wish that he would go to a place where he does not know us, as he is suffering so bad seeing himself.
coco, so happy to hear that you have had the talk with unruly family members. now your efforts will be to get your dear Dado the best of care you can find and continue to manage his care without having to be the sole caregiver. your own health is in need here as well. hugs and best of luck with getting it all under control now. divvi
coco--been following your struggles and am glad that the family is under control for the time being. Focus on getting well--it seems you have turned a corner and that the burdens of sole caregiving are, thankfully, in the past for you.
I will always remember how you helped to push me with decisions marilyninMD, it really helped .
divvi your love and soft heart just always come through your posts, despite poop queen and all that...lol..
blue, I always have you on my heart. Someday I hope to meet you. You never know. I plan on one day, flying to San Francisco, and doing an across the states journey. I will visit JudithKB* first. Can't remember where you are blue but I will detour that way if you would like. Hugs to you all.
Coco--you have to stop by in Maryland on your cross country journey. My guest room is rarely booked and we can visit all the new coffee houses and rate MD coffee vs your beloved Kona. How bout it?
Coco, I'm in Southern Maryland, about an hour & a half away from Marilyn & you can visit Emily on your way down to see me. Or we could all get together at Marilyn's! (Marilyn, hope you don't mind that I just invited all of us to your place!) Then I will drive you to see bak & lmohr (Betty & Lois). They both live close to my oldest son. We can stay overnight at his house & then head to the next closest person. I will be your personal chauffeur!
It is being a real challenge to find a place for Dado. Even the large facilities don't want to because of his fall risk.
The Adult foster home I was hoping to place him in, about a mile from me!, was dashed because one of the case managers said he was too much of a risk and she did not want to be responsible.
HOWEVER , it turns out that these places often have more than one case manager, I just talked to another one. She said the place had agreed to take him, and she would get the ball rolling. There are STILL some glitches they are trying to work out, the hospital cannot find his file on line for DHS and they need that to proceed. I just left a message with his Medicaid case worker.
This is the place where I hired them to watch Dado for 24 hours when girlfriends were visiting. He knows that man that is the husband of the husband/wife team, and he was comfortable with them. Plus, as they are Filipino they cook local food and he loves that. There is also a very ancient old mama there that looks alot like his deceased Mom, that may comfort him.
How wonderful if this comes through. Instead of driving 2 hours to see him, I can walk 10 minutes.
Coco....It was time for some good news. So pleased for you. We will keep our fingers, legs and toes crossed and pray that all comes out well for you. This is the best news I have heard in a long time and you deserve this in the highest order. Hugs...to both you and Dado
I'm sorry that I have not been more of a source for comfort since I am going through my own private hell. OK, maybe not private but maybe familair to other posters here. Most of that hell is due to my parents...not any part of your posts.
Some of what you are going through now reminds me of my situation. Taken from home to hosptial, then told, after seven days that H needed to be transported to Rehab, I had 2 hours to chose which rehab. Probably not unexpected, I chose the one closest to home.
So, he was transported there. After insurance had paid for that I received a call that rehab needed to transfer him somewhere.
He was too young for medicare so I needed to look for ASL.
This was very difficult. I had only 48 hours. Here, ALs only take medicare or LTA. Most had age restrictions.
In December 2010 I visited a wonderful facility. Everything was based on a point system. Then, the points were about 4-5 thousand for a lovely setting. They provided bed, chair and a dresser. Then the points and cost were assessed. If H had gone there then the price would have been about 6.
But, H refused. By the time he would have been sent from hosptial to rehab and then they told me 48 hours to choose AL the price had increased by just about double: the rent, plus the furnishings plus dining, plus the cost of "assisted" brought the total to about 15.
The palliative care ALC was full cost to the family. If ALF wanted to add by points there was a waiting period bu the ALF director told me that this would happen. It didn't happen because H died before any of those deadlines.
While H was in rehab, the AFL called daily (really). Then they called and I told them H had died. They could not get off the phone fast enough.
Coco, you are so strong and wonderful. Dado has been graced by your presence in his life.
ok that's it. It all hinges on if I get the hospital bill covered. If it all happens, I will take my mainland trip, and make a month of it. Coming to see you on the way Elaine H, hook up with all those others. Oh yes, bak and lmohr too!
Going to Hilo tomorrow to see my honey. Oh please keep those fingers and toes crossed, if it works out he could be out here early next week.
you know I am STILL hacking and coughing and spitting it has been a month now. How much can one cough until their lungs explode and their eyeballs pop out? Ugh.
ElaineH--It's fine that you invited yourself! The more, the merrier. Emily has already been here, so she knows how to find my house and Abby, you need to come too. Coco, hoping you get all the details with Dado pinned down quickly--I know it will be such a relief.
Cocco, I am wishing you the very best for you and your beloved Dado. Although I am new to the board I have read your posts and your dedication, love and devotion for the care of your beloved Dado is heart-felt. You will be in my prayers.
Coco, I hope that what I say will be taken only as something for you to think about. During the 3 years that my husband’s first family were doing everything they could to interfere with my husband’s care and cause me trouble, my lawyer warned me many times to go out of my way to forestall any criticism of any actions I might take. For example, his adult son would go to the facility at his mealtimes and tell the care aide I’d hired to help feed him to leave. Part of her duties were that after DH had eaten, that she would reposition him in bed because by this time he was developing a pressure sore. So the care aide left; he did not eat; he was left the same position; the pressure sore deepened. I spoke to aide about it, and she said, “In my culture, if a man in the family tells us what to do, we do it.” I had to have my lawyer write the son a letter about this, but the practice continued. Another letter was sent to him. The son stopped visiting. (The other 2 children weren’t visiting their father.) I was then advised by my lawyer to have another letter sent to all 3 children encouraging their visits at other times rather than mealtimes, that their father’s condition was worsening, and he missed them. The reason she gave was, “If there is are any problems after his death, you don’t want to give them a chance to say in court, “Mary never let us visit him.” There were plenty of problems after his death, but her advice was good: they could never say that I had neglected him or made decisions that adversely affected them. All of this is to suggest that you don’t take as long as a month away from him to travel to the Mainland, maybe no more than 2 weeks. I hope I haven’t offended you. I only know that families can be unreasonable, and I want you to protect yourself.
Coco: It's been a good while since I've checked in. Had hoped in those months you'd found some resolution. Your peristence will pay off if at long last. Glad to hear your making progress, you so deserve a break. You have great friends who have given you strength. In the end you should feel confident you've given your all. Take care.
mary75* of course you have not offended me and I appreciate your advice. As for taking a trip, this is in the "dreaming' phase, likely in a year or two. My dear Dado is so unwell, I do hope he does not die too soon, but you just never know. No traveling for quite awhile here. Plus I just got the news that my old Dad in Canada pulled through yet another heart surgery, I do not have to fly up there.
Nice to hear from you too soolow, hope you guys are ok. Long haul over the holidays isn't it?
I HAD YET MORE GREAT NEWS GUYS!!! ALL THE PAPERWORK HAS CLEARED, AND DADO WILL BE IN THE FOSTER HOME ONE MILE FROM HERE, BY JAN 30TH!!!!
I told him yesterday, that he was coming back to our town, (but I did not say our home) He knew what I meant and tears of joy rolled down his face. I know that I can once in awhile get him a pass for the day, and maybe if he is able, can come to visit his cats. This place is only a mile away!
I cried in huge relief all the way home from town, and had to pull over for a coughing fit. It was weird, it felt like that guy in "The Green Mile" when he coughed all the bad critters went flying out. If felt like I coughed out months of anguish. And I am fine, not coughing as much today.
Gotta go make coffee, I had to write this as soon as I woke up as it is such great news...
Oh Coco. Such great news. So happy for you & Dado! Now you will be able to take care of him......but in a different way. Being only a mile away is such a blessing. When my DH was at the Veterans Home it was only a 10 minute drive. Right now he is in a facility an hour & half away. He had to go there to be evaluated & have his meds adjusted so that he is calmer. He was aggressive & agitated. He has been there 2 weeks & I miss going to see him. ( I haven't gone because I have had the the flu since the day after Christmas). Hopefully the doctor treating him will come up with the right combination of meds soon & then he will be back in the Veterans Home. I will say prayers of thanksgiving for you & for your good news! ((HUGS))
Coco: Whether it is six months or two years or more. I will look forward to meeting you and doing some traveling.....Hope all you issues are solved soon. Take care my friend.
Now , he is going to be out here at the Foster home, this Wednesday, Jan. 23rd. They managed to get it done faster and now this is one whole week that I will not have to drive back and forth to town, and for him to make the big break. I will meet the Caregiver and her husband at the hospital that morning, and they will drive him the 2 hours back. I have been advised by our VA nurse, to TRY not to be overbearing especially the first week. Also talked to a few people at the hospital, and they had very good words for this care home.
I still wake up every night, thinking that I am back a few weeks ago, and then, it dawns on me that things are actually, good. My coughing has FINALLY started to let up. I had someone help me with the yard work, and things look nice.
I think of the sticky Wolf started on spouses in residence. How many times I read there, and have feared the day it was me. And now, though I know life will still be challenging and at times very sad, I feel so blessed that things have come together the way they have. Yesterday when I visited Dado, we went over and over, ONLY THREE MORE DAYS and home to our town. He is happy.
It seems odd, after this past 4 months of working on placement, on being so tired and sick and down and feeling hopeless, that there is still some joy.
WoW Coco.....You are only getting what you earned and deserve. You have been a tireless caregiver. You are now reaping the reward of all the efforts you have endured to get the best possible care for both you and Dado.
You have not only physical strength you have moral and endurance strength. I am so proud of you. Wishing the best for both of you. Good news is so welcomed here. Take care my friend.
Coco, I'm so happy for you. I remember when I placed my DH. Of course, at first I felt guilty but later I could go to see in several times a week. We would sit outside and hold hands. It was so nice to give him all my attention and somebody else did the hard work.
coco, thats the best news for you and your dear dado. having him close to home and familar ambience and the ability to visit as much as you like is worth all the hard and tireless work and endless stress. take care of your cough you know it could be part of all the placement. our bodies release our emotions thru physical pain and suffering as well. your coughing may be a way of letting out all your anger and frustrations among the actual illness. hopefully now you can let your body heal from the emotional tolls as well. divvi
tomorrow we pick him up in town, breaking him out of there. He is SOOOO ready and KNOWS he is coming back to our town. I will let you know how it goes. Right now, I am resting, praising the results, and sometimes a little smile creeps in.
One funny thing, the phone rang today and I saw it said "Hilo Medical Center" My thoughts were, oh no, they have made a change, or oh no, Dado is doing bad. (he was in rough shape when I saw him yesterday, not much sleep as the floor had a code blue and new yelling admitted patients, he had not slept. He hardly knew me, but I got him to lay down , rubbed his legs , and he slept for hours)
But no...it was a nurse who had tried my coconut candy that I had shared there, and wanted to buy some lol. I told her I am not working now, but will bring some extra.