After much debate and stress, the Veterans Home two hours from here found a bed for Dado, on Friday. I picked him up at 8:30 am at his Foster Home, and had to keep him for 6 and a half hours before I could drive over and check him in. He had to sit in the car the whole time as I can not get him in and out easily. Thank God it is warm here. I managed to just barely stand him up to be able to change him. He sat there for a couple of hours until we were ready to go, looking at whatever he looks at, whatever he thinks. I was thinking, oh this is most likely the last time he will see his beloved home, and his cats. I don't think he knew that.
We drove to town and spent the last couple of hours at a park in Hilo Bay. The bowel incident was challenging... a ton of paper towels, soapy spray bottled water and clothes and towels thrown in the garbage. My poor sweetie was crying the whole time and I tried to assure him it was ok, not his fault. By the time we got to the facility, I was a sobbing wreck, of course.
His room is bright and sunny at the end of a corridor, looking out on to a tropical garden. There is a little tv there, he likes to just hear the noise. I spent a night at a hotel near by, and was in and out, in and out, letting my presence and fierce advocacy being known. The nurses try not to roll their eyes I can tell..and he will not get the one on one care like the foster home as they are all so busy...but there are many advantages. A team of activities guys come in every day and take the wheelchair wagon train up to the big room , play bingo, ring toss, drink juice , and have the social life in the funny way they do. I sat at the bingo table with Dado and some other patients. The nurses run around and fill in the numbers for the ones that cannot, like Dado. He loved the marker pen and the table and his hands showed that.
I can see that the activities are a great boon for the nurses too, gives them a chance to do other things while many patients have that form of babysitting. Dado will start physical therapy this week and it is supposed to be very state of the art. Sure hope it helps.
It was very hard to leave and come home for a day and night. He sensed it, and yelled and yelled and I managed to lay him down. He went straight to sleep I could tell he was exhausted with all the moving.
AND HERE IS SOMETHING VERY IMPORTANT I LEARNED!!
As I was leaving my heart was breaking and I was struggling not to sob. I could see Dado would open his eyes when he heard a moan or yell from another room , wondering what was going on. Oh he will he will get used to it, he moans and yells too.
Anyway, as I was in the lobby, and old vet in a wheelchair, (of course), called me over.. He was clear of mind and obviously had just physical issues. He said what is the matter girl? I said my husband just got admitted here, and I am having such a hard time leaving him, even though I know he will get good care.
He said a couple of real simple things to me. ---"This is a good place, and I am glad you husband got his help from the VA. Remember, even though it is hard, remember that WE ARE ALL PEOPLE HERE TOO, JUST LIKE ANYONE ELSE" Then he said to take care and make sure to tell him hello when I get back.
The rest of the day, on the way home , I reflected on this. I will not be able to survive well, if I just cave in every time the grief hits. And yes, those are all people like us, and so , he gets to have THEM for friends. At least they are all sufferers together, and have their good moments too.
So I knew that the new big girl panties that Cassie* sent me were doing their job, and that they have a stronger materiel than my old ones have, and they will hold up. Oh God bless us all, or nature spirits, or angels, or all of the above. Thank you for reading my story.
That's a beautiful insight Coco. One of my favorite things to witness during Jeff's time at the ALF was when other patients interacted in sweet ways with each other. (not that it was ALWAYS sweet interaction, but Jeff tended to elicit tenderness from many.) One of the ladies, in particular, was so fond of him that she'd sit beside him as he dozed on the couch, and caress his hand or face. I considered it to be very good therapy for both of them.
Coco, you are so much stronger than you think and you keep proving it, over and over again. This placement has been so traumatic for you but it is now looking good for Dado. To see the interest in activities so soon is really promising and PT may be of benefit too. And meeting that lovely, wise man as you were leaving must give you hope. Let the staff roll their eyes at you, they will know now that you are watching them. Sending you love and good wishes as you come to terms with this new phase of your life.
I'm praying for you, Coco. I'm not there yet with Herb, but I know that day is coming and I have been looking around for a place for him. I do pray that God will take him Home before I have to move him because I know (from all of you) how hard that will be for both of us. I'm happy to hear that there are activities for Dado there, and you can console yourself with the fact that he will enjoy himself there probably more than at home with you. I know, hard pill to swallow, but we are ALL about what's best for our spouses and we suffer in silence 24/7 right along with them. You are such a kind, sweet soul but I know that you will start to heal and get stronger by the day - we all love you.
From what I have seen veterans seem to make 'friends' quicker than regular nursing homes. There is a special bond between them which is probably why. This guy sounds like he may prove that and gave you some wise words. Also, maybe veterans are more use to dealing with fellow sick veterans.
I am very happy they were able to place him that day. As you saw, you could never had cared for him at home.
I have tears reading your story. Thanks to that veteran for helping to ease your pain. You and Dado have been thru so much, you can get thru this. Bonnie
Good point! All the veterans I know have such a special bond with their brethren. There's such a special bond between men and women who have lived in the trenches together and stared down death and destruction and lived through it together. I never thought about that in regards to VA hospitals - probably the best of nursing home possibilities. Glad Dado can be there.
coco, your strength and knowing that he will get the better care as he progresses, will see you thru this new placement. Its almost like a second round of grief and duress though having to move him again. I think the new activities and new friends will be of good benefit for him as well. I hope he adjusts soon. divvi
Coco, it seems that the angels were looking out for you and Dado last week and now his Vet comrades will also be there for him. I realize that it will be a huge adjustment, knowing that he is so far away from you, but hopefully you will get into your new visiting schedule soon and everything will settle down. Hugs of strength and love coming your way.
I wish you and your dear Dado the best. I know this must be so heartbreaking for you right now. And good to know that the other residents will be looking out for him to. I do hope you are able to get some rest. Be kind to yourself, (((Hugs)))
Glad the move is over-now time for both of you to readjust. Just make sure the staff know YOU are still the caregiver and want to be kept up on EVERYTHING going on with Dada. I know the staff has lots to do but THIS is part of their job too. I know the distance is a problem for now but praying you will be able to work out something in the near future to put you closer to him. My thoughts and prayers are with both of you.
Coco, I pray that your Dado gets the wonderful care at his Veterans Home that my DH gets at the one he is at. I am very fortunate that I only live 10 minutes away so I go & visit almost everyday to feed him either lunch or dinner. Some people have told me that they treat him good because I am there so often........but you know what, they treat all the residents the same way! Hugs to you Dear Heart!
Oh thank you all so much your caring has brought me to wonderful tears.
It has been 4 days, I have been back and forth to town alot. It will iron out eventually, I may have someone interested in staying at my place over here, and I can stay 2 or 3 nights in town.
I am shocked at the change in him, since this move. NOTHING has changed, same medicines, lots of good food etc. Just a new home and new people. And now, he just sits in his chair and does not seem to recognize me when I come in, his eyes rolled up, just gone. Though he still closes his eyes when I stroke his head. He is just fading fading oh God.
His family is flying in from Maui to celebrate his 65th birthday this weekend, about 20 of them are coming. We have a room at the Veterans Home reserved for this. I am sad and a bit nervous in advance, for all of them, they will be surprised to see the changes in him since they saw him a year ago.
Sad and grateful all at the same time. I have heard from many of the families there, that it is really hard to get a bed there, and that most of them did not even get the coverage from the VA that Dado did.
I am lighting three candles tonight. One for Betty and her family, one for all of us that have our sick mates, and one for my Dad and sister that passed on. How we need strength, and hope, and belief that if we just really try to see it, that peace is in our grasp.
Coco, please know (you probably do) that his current rapid decline has nothing to do with the move, or any choices you've made. My experience is that the changes and choices we have to make DO coincide with rapid downturns, usually because we or somebody correctly assessed the subtle changes even before we could overtly say for sure.
Several times it surprised me when the wonderful head nurse at Jeff's ALF, and the unit manager, would confer with me to suggest that we should involve hospice/obtain certain equipment/prepare ourselves for whatever was next, and these things had not been obvious to me--but they turned out to be right on the money. Not that it should have surprised me...they'd seen a lot.
To my credit, I correctly intuited his impending need for placement, or that I'd better squeeze as much living as I could out of 2011 because I sensed it was the end of the time I could take him anywhere.
Even when the signs are there, because we personally have not lived through this before, it still steamrolls us.
coco it may be time for you to have hospice assess him as well. it doesn't necessarily mean things are on a spiral down soon but they will be a great help to you and him. they will be there for you to consult with his plan of care and keep him pain free. its hard to sign them up but its worth going thru the anxiety at first. of course if he improves they will assess him later on again. they also supply him with all the equipment he would need while there. a hospital bed that lowers up and down to the floor is great to help move them. hope things get better.
I wanted you to look at my new picture in our profile. It is Dado in 2002 on his first trip to Canada. Wolf put it up for me., squeezes and hugs to you Wolf!
Thanks for sharing your story in such a candid and full way. I experienced it and your feelings reading it.
I want to tell you something about my beliefs about life. I want to do that because sometimes when we hear something at the right time it helps see there are doors and windows around us.
I believe I'm far through the worst of this where I'm roughly where you are where EOAD moves fast as Dado in such a short time and my Dianne show.
We can't take things back in life in any practical ways. When we're hurt, when we have bad experiences, when we have great days - it's all there in the record of the mind. Blocked perhaps to different degrees to help us cope right now.
I can't live without the sorrow or the emptiness because they are real. I think people confuse getting away for a while by doing something for actual resolution of issues. Resolution is possible, far more possible if we work at it, and almost never happens in one big leap.
At all times belief drives our thoughts and actions. Reason is a method of forming a belief. We have arguments or discussions within ourselves but we do not act on them until we believe them. And then we do.
Our beliefs tend to stem early from what we're told, what we see, and what we experience. But they also stem from our deeper natures.
This is a time to start knowing yourself. It's a time to learn more about our beliefs and try and start helping ourselves onto paths that fit those beliefs - which, if now known to be real, are like standing on granite.
I'll use on specific example for now that may help clarify.
Some of your family is nuts. Throwing them away is almost as crazy as trying to change them. You should examine deeply what you really believe and resolve that inside yourself. Resolution isn't epiphany. It's recognizable if you actually did it though because you will feel more true within what you resolved about it.
Things can't be taken away and all experience puts brushstrokes on the canvas, but we are more than capable (even the weakest among us) of changing the picture one step at a time.
I believe this period is like a mixed drink. One part is Alzheimer's and what it's done and is doing to your lives. One part is our circumstances which have to be dealt with. One part is a little girl named Coco who has been terribly hurt. And she needs some help to get through this part now and just to have a friend.
The child in us never dies Coco, it just learns to deal with adult things. And to forget about that because adults are very busy is quite cruel here.
These are hard months ahead and hard months behind. What are they for? To look after him as best you can, yes. But who is helping Coco?
That's your job now Coco. And I guarantee you that you will end up on the path you believe.
It's best to start learning more about what that is. Gently. But so you can answer whether you're helping yourself or not.
I believe love is a real thing. I believe I have no special entitlements in life but if I don't fight for meaning in my life then I'm an animal. I have issues because of what I'm going through but I don't accept those as me. I feel humble that I have my life and I want my life. I can't take away what has happened; but, I can add new things. I believe in crying for Dianne and the love we lost. I believe in embracing life (tiny things first) and facing hardship with courage.
I don't do any of those things but I believe in them. Help yourself knowingly now by finding things as time goes by that you can believe in. These things can be anything and should be all over the map. When I found a christmas tree growing in my living room I decided it could stay. On a budget I still treat myself to some things I really like. I leave my light on reading because I say it's ok. Opportunities are all over the map and some will help.
Remember that life is like walking around a desert with a bag over your head while people rob you as they bore you. Cut yourself some slack and start noticing things you can believe in and build on as these months go by. Be careful though. Little girls often know when adults are lying.
Coco, Hoping you have a good weekend with the family. Do not let them get to you! Great talking to you today,Paul said to tell you hello from him!!! love you
thanks Wolf great post . I get it. I am keeping a space in my heart for ME, so that when and if this "ends", I will survive, and survive well. It is all so intense isn't it?!
And I have moments of clarity and lots of those moments of gratitude. Then...along comes the roller coaster and I can just barely get out of the way, that roller coaster of despair, disappointment, fear, and more grief. I let it roll over me, but now, I am not letting happen EVERY time. I just catch my breath and say, no, I will cry later. (yes Miss Scarlet)
One thing that I look forward to, that if Dado leaves me, for good, I am going to rent a car in Washington state, and make my way across for 2 months of exploring America. Hopefully I will visit Charlotte up there, and meander around visiting my friends from here. When I feel naughty I will keep to myself.
love you too bak, I will light the candles again tonight I found them comforting. And looking forward to meeting you someday!
emily* I meant to thank you for your post too. It is just so weird that he seem to spiral immediately after he got there. Likely you are right, it was coming. I am hoping so much though...that when I go see him tomorrow, he might be just a bit better.I am sure we are never ready to have them just let go of us.
Coco: I haven't been on the site for several weeks. This morning I am on and so glad to hear that things at the VA place is working out so great or you and Dado. None of this is easy, but at least you are moving forward and that is good for both of you. Please keep in touch with all of us and when you take that trip...please let me know so we can meet up some place. Maybe Las Vegas would be nice or you can visit me at my new place. I often wonder how I could have made it though the last years and month of Jim's life without this place. We all are so helped by others and their comments. I feel badly that I haven't been on very often, however I am still taking care of my daughter while she is with me during the week when her husband is working. She can't be alone right now and I don't know if she will ever be able to go back to work. I would love for them to move closer to me so I could keep and eye on her and maybe that will happen. Take care my friend and let us hear from you often.
Judith how awesome to see you. I posted some new information for you on the "JudithKB* thread, and will bring it up for you. Love to you dear one. Hope your daughter is ok!
I saw your note on the other thread. I have been following your and Dado's journey. What a relief to know that he is in good care- that you approve of the place and how you have arranged things. Of course, he is really still in your care, because how can that ever change?
I can just picture the cats when you come home! Mine were (and still are) so sensitive to what goes on with me. I think they can fly around the house without even touching the floor sometimes. They just know.
It has now been very close to 2 months since Dado was admitted to the Veterans home. If you read my first post, you will see how awful he was at first. Well, due to a mistake in paperwork, Dado was put on Aricept again when he was first admitted, after 3 months of being taken off it. (and I like him better off it, he was more aware)
Anyway after about 2 weeks taken off the Aricept, he got back "up", not sitting and drooling in his chair, and having his eyes open a lot more. He also make more interaction now. The Wheelchair brigade know to give him the "shaka" when they see him, the Hawaii hang loose symbol. thumb and pinkie extended, closed middle fingers, and shake it. Dado will usually respond, he cannot do it real great anymore and sometimes it is a weak thumbs up. But it is a reaction and that is good.
He eats, though, his Parkinsonian type symptoms are causing him to choke quite a bit. They have him on chopped food, and thickened, ew, drinks.
I do drive two to three times a week round trip of 180 miles. And I have a little room over there I sometimes spend the night. I am rolling around the idea of renting out my house here, and living full time in Hilo.
As for me, I am doing somewhat better. Not crying as much. Honing my advocacy. And contemplating doing something good for me, like renting a little kayak down Hilo bay once in awhile, paddle around the gorgeous lagoon and let my troubles dissipate in the warm air.
Watching a football game last week from Hawaii and thought about you and Dado so thanks for letting all know what's taking place. Rent that kayak, enjoy every minute you can, relieve some of the stress, it will make you a better advocate for your loved one.
Coco...you have made the right decisions for both of you. Sorry that it has to be so far from your home. I've been thinking about you during these holidays and so glad to hear that you seem to have everything under control. Please keep us posted.
I saw your post about the turtles on another topic just now. I always thought the turtles were maybe the size of a greeting card. Well, some time ago after you initially mentioned that pond I googled turtle ponds on your island, and let's just say I learned a lot!
My husband was also on a "mechanical" diet and some kind of thickener. Ew is right.
I remember you mentioned friends were coming to you for the holiday- friends who made you laugh. Are they with you now or is that yet to come?
Coco, Please do rent the kayak. It sounds so peaceful, to just paddle around. You need to do this for yourself. Enjoy to sunshine for me : ) Cold and cloudy here.