HI everyone, I decided to start a new "placement" thread. I piggybacked on Bluedaze's* because it was so beautiful, and helpful, sad, and revealing. Now I will start fresh , I have copied a bit from what I started. This thread is for ALL OF US< I hope, that anyone that wants to share their experience will add on here.
so to repeat....
I have contacted a Medicaid specialist that has helped me in the past, tired of waiting I need help now. The fee is low. Things are lined up. Foster home only a 5 minute drive. Doctors notified of Level of Care form.
This past 24 hours have been hell on earth. Watching him run his hands in a urine soaked deck, sexual issues, crying, falling, I have to let him go. Sobbed and cried to his nurse on the phone, she is behind me all the way, I hope.
and...
I have talked to the person in charge of the Adult center I am interested in, a private very nice clean home, close to here, with 3 beds. One is available. Next step is sending in the Medicaid papers which I will do tomorrow. If I am accepted they will call a meeting, and at that time the Level of Care form will be needed from his doctors.
Divvi I cannot tell you how much your words rang true and mean to me. yes, sometimes we kid ourselves they are not so sick. And yes, off with junk friends, I have had it, with callous and uncaring and selfish. I had one huge jewel lately, my friend June from Canada that spent 2 weeks here. She cooked and cleaned and hugged Dado and made us so happy.
AND!! I always had a good feeling about his Medicaid specialist in Honolulu. He helped me to get my State Medical some months ago, and did not charge me a cent as I was so together on the paperwork. So I contacted him to hire him to help now, he sent me tons of information and phone numbers and said would not take any money, that I could do most of it myself. Amazing to see in the business world, and he has a large company, that their is caring.
sad and soft and hurting today, but moving on. Love you guys.
Hang in there Coco--I think the part of the trip you're in now is the most wrenching in many ways. I hope the pieces will begin to find their places.
It's a rough road, but can work out to be a relatively good thing. (By "relatively," I am, of course, acknowledging that the overall situation is crap, but within the parameters of crap, placement can be good.)
Jeff is well fed, well cared for, and comfortable. We had a rocky start last Spring, but meds and time (and decline) have settled things to where the arrangement, as it stands, is as good as it can be for both of us.
Suffice it to say, you all who've been there know the wistful melancholy of being separated from your loved one, while realizing full well that returning him/her home would be no better for him/her, and significantly worse for you.
((Coco)) I have just read your posts in the other thread as well, how my heart aches for you! I told myself I would never say this to another caregiver as I remember how much it pissed me off when people said it to me... but here I go saying it, because quite simply it is the truth, you are so strong Coco! I know you are feeling anything but that right now, but to be able to face all you are takes a strength most can't imagine.
How wonderful it is to hear your Medicaid specialist has been so kind and helpful to you. Warms my heart.
I agree with Emily, where you are right now is horrifically painful. You know you need to place them, the feelings of letting go, the desperation, the heartache, the guilt, the love, the madness of it all..... You have battled so much of these feeling already, please don't back down now. You will only have to suffer these feelings, and more, the next time around. I say this because I did that, I thought I could hang on just a little bit longer. And I did, but I suffered greatly for it.
Kindly remind yourself daily, hourly, that you are doing this in love. Your Dado needs more care than humanly possible for one person to provide. He will be safe and well taken care of. And you dear Coco will get some much needed rest, of mind and body. And after you are able to swallow the constant lump in your throat, when the pain becomes a tiny bit less, then you will be able to clearly see you did the best thing you could for Dado and for you.
I didn’t think I would survive Lynn’s placement, I can’t put to words the level of pain I experienced. My transition was much more difficult than his. I say this not to frighten you, but to let you know that though it hurt like hell, I DID survive. You will too my friend, we are here to help you ((hugs))
What I found striking in reading through the old placement post was that in Nov 2008 I was talking about how strongly I felt about keeping Lynn home until God called him home. How I naively thought I had all my ducks in a row and knew just what my game plan would be. 3 months later I had to place Lynn.
Holy crap! 3 months! Still so shocking looking back on that time in our lives. How quickly the tides turn. Sink or swim.
Don’t sink Coco, come join me for a little swim, perhaps in your secret lava warmed pond with the resident turtle :)
Fiona68, emily, Nikki. thanks for being here for me , everytime.
Yes Nikki I read through Nora's thread from the beginning, and was very struck by your determination not to place Lynn. Now I know you had to do it for health reasons for yourself too., yet dear friend, I think you would have had to do it anyway yes?
And that hurt and pain and hell you talk about, well I tell you the truth, if I did not have all your experiences to read and absorb and fall back on, not sure if I would handle it near as well. Really, I do not know anyone in my life that has gone through this, except for a girlfriend who has her mother in a home.
I HAVE DONE IT!!! The Medicaid papers are going in the mail today!! Hard to celebrate, and yet, it is good to have them done. And , maybe I should not get too hopeful, as to the acceptance, however the packet goes to Kona office to the same manager that helped me with my State Medical. In fact she was the one that sent me the packet to fill out and was very kind and informative. This is one of those times, as there have been a few lately, where it has really paid to live in a small state where paths cross. My constant anal calls and records and honest questions will hopefully pay off with Medicaid accepting my plea.
I feel sooo much better today after a good night sleep. And the friend who caused me deep grief the other day has been talked to, lightly scolded, and took it rather well. I am NOT going to be hanging out with her all the time on my 10 day respite coming up., I am going to do something special for me, a wee camping trip by a beautiful lagoon. A condo in the town is lovely, but there is no substitute for stars and warm ocean lapping sounds.
I will maybe even go the the warm turtle pond, and send out love over the rainbow bridge to you Nikki, and Abby who wanted to come, and all of you precious precious souls.
oh and lol...note my headline saying 2011 to 2012..oops behind by a year
Coco, we all love you and hope your 10 days are a wonderful rest for you. You really need it and I am glad you have that time for yourself. I too would love to visit the warm turtle pond, so when you visit send my love to the wonderful turtles.
YEP, YOU ROCK !!! Coco, we have all drawn strength from your efforts and courage. So very glad your plans are to do something for yourself, doing what would be good for you. Know you are deserving of every smile. Rest.
If I make it to the Turtle Pond, I will say a prayer for you all. Otherwise the salty lagoon will have to do. I still have just under two weeks, my 10 day respite starts Dec. 3rd. Bought all tickets back and forth to Honolulu and the fares were decent. Wheelchair to be decorated with flags and fun things as JudithKB had done.
So...placement. Yesterday the VA social worker called me to get an update, it has been some weeks since I talked to her. She is so awesome and kind. Originally I had her coaching me along, but as they are so busy there and even just one holiday messes up a whole week with them, I have gone with the Agent for the Adult Foster Home to help me.
After I told the Social Worker that I had sent in the Medicaid papers with ALL the paperwork, and sent a request to the VA nurse to get started on the Level of Care form , she told me, " You are a Social Workers dream" Lol, oh well, at least someone's dream.
So now it is the waiting game, to see if I get the initial appt. I sure hope so,...he just gets worse and worse. My back is sore today, tried not to over do it with his falling yesterday but it is hard to just see him splayed on the floor.
Coco, you are so blessed to have so much support from the legal side. Yup, blessings of living in a small place I guess, but also you're obviously keen of mind and stamina to prepare necessary paperwork. NEVER sell yourself short. I pray that all goes well for you now and during respite. Camping out as you described it sounds great to me. One person cannot be a 24/7 caregiver when things get difficult without succumbing themselves to poor health and stress-related problems.
Since I wrote the note this morning Zibby*, I have already had a call from the Medicaid lady that I had talked to before!! I only sent the papers last Thursday, 4 days ago!!
I have an appt. with her on Wed. Nov. 28th!! ' and why can I not stop crying, as I look at him sitting there on the deck. Then I feel the big pain in my back from lifting him. Oh God, it is not like he will not be a 5 minute drive away, I can still see him and take care of him, and yet I hurt so bad. How I know how you all feel that have done this.
God help us all to know that we are doing the right thing.
Coco, I'm sure most of us felt very guilty when we placed them. I remember almost thinking about bringing him back home.Mine was only ten minutes away so I went three times a week and stayed for a couple of hours each time. Without all the stress from before, I was able to love him so much more.
thanks guys. Yes Carolyn* a mixture of guilt, and such sadness for him having to leave his home. I am balancing the good over the bad and the good is winning out, which is to proceed.
I am fine now...crazy how I just fell apart this morning, it just came out of the blue. I will open this thread again when more news comes, or if anyone else wants to join in.
Oh, dear lady!!! So very happy that things are moving forward for you, and so pray it continues like this. As much as it hurts, you must know that your situation is just a horrible accident waiting to happen, with either of you. You are taking necessary steps to put both of you in the best positions for your well being. What a blessing for him that you are there to look out for his best interests, even though it will be tough for both of you, especially you. You are such a roll model for me. Keep on keep'n on. Can hear that drum roll for your upcoming respite.
I just read the thread "Spouse in Residence", it is so helpful as I go through this process. Loved your comments lately Wolf and you deserve one of these...(Wolf) I still am saddened though that people visit "regular" sick people, but not Alzheimers patients.
It is getting close, appointment with Medicaid this Wednesday. It is so weird how I STILL waver, and think well maybe I can do it, KNOWING I cannot, KNOWING that my batteries are wearing down and I will suffer physically and emotionally to the point of giving up, if I don't.
I use my "scale", the side that says yes I have to place him, and the one that says no, well the placing side is much heavier. Oh talk about trauma and I have only been in 2 years! I can feel my soul breaking in to little shaky pieces, then, I slip on a pair of big girl panties, and it starts to mend again.
Yah, well, I had three of those 'big girl panties' sent to me by a donor here who will remain anonymous and you can have them if they help.
Is the experience of the thing worth the cost of the thing? Oh god yes. Is my life worth having? It's not even close. YES! And even though my life is full of saddness, I'm grateful that I have more time here. I also know I valued what we had and I don't regret it. And, Coco, I know that as time goes on I will be at my market selling the products I made living my life with a hole in my heart; but, living my life. I believe that somewhere we should try and find it in our hearts to forgive the world for being the way it is, accept the price we paid for what we had, and try to find a path to some spirit and even joy again. I believe that if we could find such a road our caregiven spouses would weep in gratitude.
Coco, your remark about people not visiting Alzheimer patients really hit home. There was a couple that we had socialized with quite a bit. They never went to see Jean in the 2- 1/2 years he was in the nursing home. She said that she just couldn't visit a nursing home. I never said anything to them, but i was very, very hurt.
Now that I'm living this ALz life....I'm ashamed to say that when my DD's FIL had Alz,...going back 18 years now. I was one that could not visit him, I just wanted to remember him as he was before Alz. Now here i am living this nightmare, seeing how some member's of my family are doing the same, yes it breaks my heart, but perhaps one day they will regret it....like I did, knowing now how it must have hurt his wife / carer and my SIL...
(note--I typed this before Julia posted about having been one of the people who didn't want to visit. As we all know, sometimes one of life's favorite tricks is to not take no for an answer. And to fully own up--I was not good with agedness either when I was a young person. I have grown into it.)
Well, it may help to keep in mind that the only possible reason people "couldn't visit a nursing home" is desperate fear of facing their own mortality. That's the only reason. It's too bad, because there is much love to be shared not only with your own LO, but with the other residents. Life is messy and real, and we might as well face it and immerse ourselves in it. The difference between us and the people who avoid is that we've had reality thrust upon us, and they haven't. Still, denial is not enhancing their lives, or their richness as people. They are choosing a shallow path, and you might as well have a little compassion for them I guess. Maybe knowing that doesn't save us from feeling disappointed or abandoned, but it's more their loss for choosing a limited, hedonistic life.
Oh Julia, no one knows how they will act until they are actually confronted with the situation. I sometimes wonder how I would have reacted if one of my friends spouses were diagnosed with AZ. Would I have gone to help? Would I have offered support? Would I go visit them in a nursing home? I'd like to think I would have, but really I don't know. I try not to have a grudge against people who I KNOW could have been a help to me. Do I want them to go visit my DH in the Veterans Home? Well only if they want to & suggest it. Then I try to tell them that he won't remember them & to be prepared for that. Julia, how are you doing? How often do you go & visit your DH?
I love that expression emily, a limited, hedonistic life. That was me for most of my life. Me me me me. I chose not to have children, and it made me more that way. I know it cannot be changed, how I wish I was more like I am now, more caring, and needing so much less.
I am harboring anger and resentment though, still , towards the fairweather friends, I would like to turn that in to changing the type of people I bring it to my life, and to become an even more caring person. I would like to understand and forgive, eventually. Feeling not as loved as I thought I was is rather crushing.
Is there some hidden reasons, that these things happen to us? If so, and if it is meant to sharpen us and help us grow, then I see God in it. Where that puts the selfish truly uncaring ones, I do not know.
This meeting with the Medicaid worker on Wednesday is such an important event, in my overall life, and Dado's of course. I think I am ready for just about any outcome. That cardboard box is not out of my mind yet. There are lots of bushes here, the weather is warm, and fruit trees abundant.
Don't seem myself there though, there has been such a pattern in this paperwork and phone calls, and diaries, that seem to have actually made sense, and moved forward.
Thanks for that special hug, Coco.This is the first Christmas that Jean isn't on this earth. Even tho he was in the NH, I could still drive right over there (10 minutes), give him a kiss and sit and hold his hand for a couple of hours.
Hi Elaine....this so hard.. Never in my wildest dreams did I ever think we would be travelling down this road. I go to see Reno every second day, he too has had to have extra meds when incidents happen, don't feel bad Elaine. I guess it's for everyone's safety, but I don't like to see him so doped up. can you believe , but i have even had thoughts of bringing him home....for a while my heart was overtaking my heads better judgements....after seeing him yesterday, and how irritated and grumpy he was....I soon had a change of heart. i still cry a lot, I think it may be time for some counselling for me ....I thought it would be easier by now, but it's not!
Julia, I also have wondered if I could have kept him home longer because MOST of the time he seems pretty calm. BUT it's the times that he is agitated that makes me realize that I did the right thing. I know he is getting good care there & when he gets agitated they medicate him. I cry too, but I'm not ready for counseling. The hardest time for me is when I leave. I always have to tell him a “fiblet” that I am going to the bathroom or to check on something. I don't think he realizes that I don't live there too. The staff says that he is constantly asking where I am. It's just so sad.
Elaine, leaving is the hardest time for me too. I try to go in the morning around 10am, then when he sits down for lunch, I tell him I'm going to get some lunch and will see him later. He seems to accept that, rather than anything else I say.
I haven't been now since Sunday, as I'm waiting for someone to come fix a broken roof tile, I really think it's best not to go too often, for me and for him. They tell me he's always asking for me too, and when I'm there, if any of the men come anywhere near me he tells them to" back off "...so sweet in a way, but I'm scared he'll tackle them and cause problems, resulting in more meds. Day by day... I tell myself...
I just read through this whole thread again, oh it helps so much. ElaineH and Julia I feel I may be right on your heels , with placement, and with those emotions you both have.
TOMORROW IS THE MEETING! I talked to the VA social worker today too, and she said it seems to be going at "lightning speed"
And, even though the scales are weighing heavily in favor of what I am doing, I feel empty and sad. Very much so. I see that is normal, and, I can come here for comfort. Back tomorrow evening to let you know how the meeting went.
Best of luck for your meeting Coco. You will feel many different emotions, at first I felt relief, then overwhelmimg guilt, now it's sadness, sadness that he's in there and I'm here in the home he provided for us. Yesterday while cleanning out the shed some more, I found a silver cigarette case that I gave him on our first Christmas together...engraved from me to him with love and the date 1961. He gave up smoking over 25 years ago....well that started off the tears all over again. I will be thinking of you Coco...
Best of luck with the meeting Coco!! Will be checking in to get an update and hoping it is wonderful news :)
To all you beautiful souls who have recently placed your spouse, I feel so deeply for you. Please try to be gentle with yourselves, YOU are "transitioning" too! It isn’t “just depression” … you are in mourning! It may not be that final goodbye, but good Lord it hurts like hell….
Your whole world has just drastically changed. It is completely different feeling alone while they are still at home with you, than actually physically being alone when you have to place them. Allow yourself time to grieve the losses as you feel them. And again, please be gentle with yourself ((hugs))
thanks Julia, and Nikki, and emily you are all so amazing and helpful. It is weird how reading about your pain makes mine more acceptable, like you cyber friends are reaching out truly . How I love you all.
Ok update..now please as the first part is a diversion, as you read on you will see why.
I drove to Kona yesterday to the Medicaid office, Dado was home with the Aide. I found the building and was not sure where to park. There was a nice looking woman in a casual business suit walking by, and I asked her. She showed me where I could park. So I parked in a lucky to find shade spot, (Doris Day parking), and the lady was over by some trees there with a bag of food feeding the wild cats. I chatted with her for awhile about all those cats, she told me there were about 25 all spayed and neutered, and that all the employees around took care to feed them.
Anyway, I asked her where she worked, and she said at the Medicaid office. I said, 'Are you Mrs. L?" And she said, " Are you Patricia", and we both laughed. We had been acquainted on the phone for months, and then we met face to face with General the orange cat. So we proceeded to our meeting.
It is moving along, she was so helpful and professional and gave me lots of advice on finances, homes, income, etc. There is a bit of a stall because I need to get a Disability form along with his level of care form, she said she would notify the office to try to speed it up. (First it has to be filled by his doctors, and , I am not in a hurry)
So I have filled out MY final paperwork and will submit it in a few days. If all goes as hoped...he could be in the Adult Foster care close to here in 6 weeks or even less! She was a little concerned that his level of care might be a bit too high, and that he will need a regular nursing home. I hope it does not come to this, as that is 100 miles away.
So despite tears, and fears, the scale still tips on doing this. Monday I take him to Honolulu Veterans home , and I have 10 days respite. Hopefully this will be good practice for us.
More later, and I look forward to reading what others have to say on their experience too.
Coco...You sound so much better. I know this isn't easy and I admire you and all the others that have to take the path of placement. It is so hard for all of you. Hopefully, all will go well when you get your respite both for you and Dado. Maybe this is like a trial run. Wish I had some words of wisdom for you, but you know this is one experience I have no knowledge of how hard it must be. Take care of yourself and keep us posted when you can and know that I am thinking about you and have faith that you are one strong gal (stronger then even you know) and that you will be able to handle the situation with flying colors.
I hope things move along quickly for you Coco. The waiting just makes the heart ache more....... Know in your heart you are doing what is best for Dado, he will be safe and you can visit as often as you wish. You will be rested and this will allow you to make his happiness your top priority. Often times doing the right thing is also the most difficult. You both remain in my thoughts ((hugs)) Is it today that you take Dado for respite? I hope you have an awesome time on your mini vacation ☼ Much love ((coco))
I do believe today is the day she took him to the other Island for her respite. Wish I had asked her if she was going to stay on the other Island or if she was going to come back to her home. Hope we hear from her how things went and hope she keeps in touch during this time.
I am here. Just got home from travels to Honolulu and dropped off Dado. The traveling was hard, mainly the trying to get him to toilets as he can barely walk.
When we got to the center, he cried and cried, the visitors cried, and I slipped away while one of his sisters was there to soften the blow.
I want to answer the thread ring started, and the comments about Wolf and his wife, and to tell you all again how I admire you. But I am so sad sitting here and had no idea it would be this hard.(feels like practice for placement) It is something no one can share with us. Yet I have you all, the only ones, that really know. Thank you for caring, and I too care about you all, and will comment on your threads tomorrow.
awwwwwwww more hugs for you dear ((Coco)) We had no place that would take Lynn so I have no respite wisdom to pass on for you. I imagine with the thoughts of placement swimming around in your head that this is making it hard for you to enjoy your little break. "Practice for placement" ...but with placement you will be able to visit as much as you want. I hope you are able to find moments of pleasure Coco, rest and do some special things just for you. And remember, your Dado loves you and would want you to try to find some happiness. ((love and hugs))
Coco... enjoy your respite. As Scarlett in Gone With The Wind said I'll think about that (placement) another day. You need this time to recharge your batteries. Enjoy...That's an order.
Just one day at a time. You are going to be over-come with emotions...that is because you are so in need of this respite. Just let it all hang out for a day or two and get rested and then you will be your self again. Well...not totally, but you will be amazed how much better you are going to feel. You just don't really know how exhausted you are until you recover Huggggs.
Oh God oh God I cannot do this. Just got a screaming call from his adopted adult grandaughter calling me swear names and yelling at me from Maui about why I did not let them know he was in respite. Why I did not send him to live with them , that I was a cow and she hated me.
I told her he was not there because of a medical emergency but as a rest for ME, and that I could not think of calling everyone. I have never been sworn and yelled at like that before. I want to go get him tomorrow, she is talking about flying over there and making a fuss. How can I do this oh God how.
OHHH Coco....How horrible. But, don't let someone else dictate to you what you should or should not do. Let them go get him....and see how fast they will take him back.....You are doing the right thing..that is why the VA provides respite care. They know what a difficult job being a caregiver is and that you need the rest or you can't keep doing this for a long time. Just be cool...she does't understand and who is she to tell you what you should or should not do...she hasn't walked in your shoes. HUGGGGS.
I must survive this intact. and Bama* has ordered me to enjoy..I hope so Bama*, I so was hoping so. I think, that now people are hearing he is there, and assuming either it was some medical emergency that I did not let them know about, or that I am the haole foreigner that does not love him and was trying to get rid of him.
That was the worst attack I have ever had in my life, vile, vicious, unfounded. I did finally get her to answer my call and had her calmed down a bit, and in fact, I had taken a list of names to call and hers was on the top.
I don't dislike her, I forgive her, and I just have to know, that so many people just do not care about me. This is the life I chose. I miss my man so much. And I thank you for listening to me, and hugs to you all too.
Coco, I am so sorry that as exhausted as you are, you have to deal with with ignorant and cruel people. As many here have experienced, when we make decisions for our loved ones, family comes out of the proverbial woodwork to accuse us of terrible things. I'm trying not to take it personally but understand that these attacks come from their lack of understanding and control. It has little to do with me. Arms around you Coco.
Holy crap! And YOU forgive HER? Pfffft….. All I can say is you are cut from a finer cloth than I dear Coco. I know you are trying to keep peace, but really, just who the hell does she think she is?
If she had come to visit, or even simply called now and again she would know what was going on now wouldn’t she? Please do not let them deter you from placement. What they think about you or the situation has zero bearing on the fact that you can not do this alone.
You matter Coco, a great deal. Maybe not to them, but to many people, including those of us here who have come to care so much for you. For once, put Coco’s needs above everyone else. Don’t let this insignificant pissant add to your burden or your guilt. You are doing the very best you can in an impossible situation!
If they oppose placement I agree wholeheartedly with Judith, let them “walk the talk” and come take care of him themselves. That will put it in perspective for them.
Deep breaths, one moment at a time. I am so sorry you were troubled with this, the very last thing you needed. Try very hard to let go and relax. ((many many MANY Hugs))