Hi everyone, have not been around as much as I have company. But I have really wanted to share this with you. The news on Dado's decline is not good, still some falls, mostly just cannot get walking, and his mental state just seems to be diminishing so quickly!! December makes only 2 years since diagnosis, he was still driving and helping me then!!
The first girlfriend to arrive, cried the first day when she saw us. She said he was way worse than she pictured, and then could see why I was having trouble with it all.
This is a bit long, sorry but there is not other way to tell it.
A few weeks ago, when he was having the really bad falls, I was scared and desperate as many of you remember. We even ended up in emergency after he fell and banged his head. I hurt my back trying to help him and it is all so hard.
At that time, I really starting thinking seriously that I would have to place him. Even if I had family around to help, truly it seems we are just not qualified for a lot of it. I had resigned myself to incontinence, bathing him and all we do, but the falling all the time is so scary. Plus I cannot work which I will need to go back eventually.
Anyway, I had checked out two nursing homes, and one Adult Foster care, all of them of course had to take Medicaid, and we should qualify. I was DEPRESSED at the nursing homes, not only were they too far away, I just felt awful about how institutional they are. The Foster care I did like, a 4 patient home with a husband/wife team...but...it is almost THREE hours away. I just have not felt ready to have him so far away, where I could not see him enough.
Then, I found some numbers for some local Foster care right in our town. I called one of the numbers, and the Filipino lady who answered said, oh, she had one, her sister had another , and the third one was her cousin. So like Hawaii, everyone is related. I talked to her at length, she said yes they all take Medicaid, however, she was full, and her sister was full, but, her cousin had 3 beds and no one there at the time. I asked where she was located, and she said......Green sand subdivision. WELL>>>>>>>you could have caught me as I almost fell. WE LIVE in Green sand subdivision. I would have never thought there was a Foster care home anywhere , it is a pretty undeveloped place and most of the side roads are gravel.
After talking to the lady at that house, I made a time to go look. I was trying not to get any hopes up. I put him in the car and we drove the half mile there. He sat in the car as I went inside and looked, of course oblivious as to what I was doing. As she showed me around, her husband and his old Filipino cronies that were hanging out in the gazebo, came over to talk to Dado. The husband remembered him from when he worked at the Hardware store and talked away to him, (as he pretended he remembered them)
SO about the place. It is SO LOCAL< and of course that is what Dado grew up with. SO Filipino, big poofy flowery curtains, two giant couches covered in homeade frilly covers of all colors. There was one room with a private bath that was cool and sweet. Everything is wheelchair accessable.
I could go on and on. If this was a white bread person, please no offense you know what I mean, or, someone rich and used to sparkling everything, it would not suit them. However,, I could have just left Dado there that moment, he was about ready to stay. There is all kinds of action, the old guys laughing, the 92 year old Filipino tutu, (grandma), and the smell of chicken hekka and rice cooking.
SO in conclusion, if I am going to place him, if I am going to finish up the paperwork on it all, this could be the PERFECT place. I could simply walk up to see him.AND, they are going to do private hire too, while my friends are here we have somewhere to take him, as the Home Aide I have only comes one half day a week.
Oh and one more thing. The VA social worker that I love, has told me they are looking for one more place for respite out here in this remote area, and they are going to check her out This means, that he will still have his Medical team of nurses and doctors that make the journey out here once a month.
I have gotten up at least 6 times as I write this. Help him on toilet, clean up awful misses, try to make him sit as he is stumbling etc etc. You know.
I had both Filipino & Belize helpers from time to time, and briefly had DH in a 6-pack home like you describe. Currently have Belize family helping my VaD sister in her home. You get the whole family. Good for you, hope it all works out.
coco, very good news indeed to have a place so close. you will be much better at ease able to pop in and see him when you can. its so good to hear you have started the placement procedure in the works and not wait til last minute. you never know when the time can be bumped up. enjoy your friends, and happy to hear you are working thru this friend. from somewhere we do muster the willpower to overcome. divvi
Great...sounds like the perfect place. Several weeks ago, I think I commented "you would know what to do when the time comes for you to make a decsion." I just knew something was instore for you and Dado. Maybe it would be better if you placed your name at the home that is so close to you. You could just tell them you are involved in paper work and you have to be sure medicare will pay....etc. and at least you would have your name down for them to know you are really intersted. I know you have faced the reality of Dado's condition and the fact there will be no improvement...and most importantly that you cannot continue to care for him for much longer. In your head, you have decided the most difficult part....now you know what to do and this gift has been given to you. Hugs...and more hugs.
Oh Coco! That is VERY good news. After what you have been through you were due some good news! I hope it all works out for you. I was fortunate that when I knew it was time to place my DH there was an opening at the local Veterans Home & it is only 8 minutes away. Have a good time with your friends. ((HUGS))
Remember too, SOONER RATHER THAN LATER.... How many times I've read on this site, "Oh I know now I should have done this sooner, he is so comfortable and so happy." I've been so worried about you, Coco, ... I agree that you should get your name on their list. I am sure it will NOT have 3 empty beds soon.
aww thanks everyone. marilynMD you are the one that really gets me going, ever since that week I had with the falling. I am going to have the papers ready to file by next week. I realize Medicaid can take many months to come through ., yet, if I cannot handle it if it gets way worse, I will take some of the cash my sister left me and pay them. I think it runs between $3000 to $3500 a month. Hanging on for now and seeing how things are going.
Cause you know what? He is failing and falling and getting worse each and every day. Both my girlfriends are here now and shocked, no matter what I had told them over the phone these past months prepared them for him. We had a horrible time trying to take him to town with us yesterday, it is very likely the last time I will take him. Even with a wheelchair he was falling and for the first time he is starting to get angry and yell, of course people around us looking at us.
His eyes are bloodshot and empty and he has a really strange look, and he is so unhappy.
His brain is just going god it is awful. And then, how great this HALLELUJAH I hope it all works out. We are having a 24 hour caregiving with the Filipino house this Saturday, dropping him off, taking a girlie island tour, and picking him up the next day. They charged us a reasonable rate, and like I said, I really think he WANTS to be there. Maybe they can make him smile. He will love the food.
It will be a good test to see how it goes over there. I am now able to not have my heart tear and break with every tear and sadness he has. You just cannot break every time.
Oh, Coco, I know how hard this is for you.When I first place my DH in the nursing home, it was the hardest thing I had ever done.. I'm glad that you found a place nearby. My place was only 10 minutes away so I was able to go often. At first, he may want to go with you when you leave. That's where little fiblets come in handy. I always said that I had to go to the bathroom. Of course, when I was out of sight, he forgot. Good Luck.
Dear sweet Coco, such wonderful news!!! I hope the trial on Saturday goes smoothly for your Dado and I hope you and your girlfriends have a blast!! You so deserve to have some happy moments in your life. Having him so close to home will be such a blessing. Lynn is less than 15 minutes from me, every day I told myself, it's ok Nikki, he is only 15 mins away... it brings peace to know you can be there so quickly. The falling has to be so very hard to witness..... I hope you both find comfort and peace when you place him ((hugs))
Oh Coco, I'm so happy that my words have helped motivate you. The twists and turns of this damned disease can overtake our lives as well as our LO's. I really believe that we have to wrestle control away from the disease--to the extent we can--by advance planning. So glad you have your dear friends there with you to gather strength from.
I am so relieved for you. Please remember that the first week you bring him there will bring mixed emotions on your part. But as things settle down it will be easier. I know you have your brain and hands full with all the paper work and so on! I was just in a muddle for a few days, but I feel pretty clear today and mine has been in for a week and one day. I'm looking forward to driving some 40 miles next week to a neurologist for a problem I have with my eye. I will be gone all that day with a friend and it sounds like FREEDOM! It's been so long since there has been free time with no accounting. The "girlie" tour will be wonderful for you ,and I'm sure you will enjoy every minute!
The 24 stay over was a pretty good success a few weeks ago. He hardly seemed phased when I picked him up.
Now...I am filling out Medicaid and requesting a form Level of Care from doctors. I am trying trying to have it ready to submit by sometime in the next couple of weeks. Dado is so depressed, cries and sobs everyday and even told me yesterday he wanted to die. My precious guy.
Some of you may understand this. How were our marriages BEFORE AD? Well, ours was definetely a commitment, maybe things get a little less exciting over the years, but we loved each other and mostly enjoyed yard improving and bar b q's. Now that he is so very ill, it makes you see how much you really love them. I would gladly take this disease for him, if I could. How empty and hurtful and deeply sad it is to lay in my bed at night, hearing him moaning and tossing in the other room.
Coco....you are so right about the love situation. I too know that the closer Jim got to the end, the more I seemed to recognized how much I truely loved him. Reading the various posts on here of what some, including you, are going through I acknowledge I had it easy compared to many. This also helped me devote the time and love to him as he neared the end. It is so good to see you posting again since your guest has left. Your real reward will come later when you can rest and think of how good you were to Dado and how you know he did appreciate what you do for him.
Coco, it's good that you can still have those loving thoughts towards Dado. My DH was so angry & agitated when he was home that it was very hard to like him, let alone love him. I know that others here feel the same way about their LO's& when we voiced our frustrations over the lost loving feelings a very wise, but young, member here gave us, or at least me, hope that once our LO's were placed that loving feeling could very well come back. Well Nikki, you were right! Now when I go & visit Tom at the Veterans Home I sit & hold his hand, or rub his neck & he smiles at me & tells me he loves me & that loving feeling I once had towards him ,that I never thought I would again, have come back. Yes it is different then when we were first together & it is different than it would be if AD wouldn't have reared its ugly head, but it is still love, & I am so thankful to be able to feel it again.
This discussion has been valuable to those of us not quite on the threshold of placement . I told DH tonight that soon I am going to go with a gal who knows all the assisted living facilities in our area to see what might be a good fit if ( fiblet here) one of us needs assisted care for some reason. He said it would not be him, he is fit as a fiddle...doesn't hurt anywhere.... same ol same ol....
But as I watch his walking around the house and couple that with my recent bout with anxiety, and having to be put on meds, I told him I need to see what is out there now. If one of us ends up needing a place, even on a temp basis I need to know how to go about it and where the good places are and how much it might cost....he seemed ok with it at the moment.
Something too, today is the first day since 9/11 that I have had no sensory issues. Took my morning meds...felt good all day ...which is so nice..I almost forgot what that feels like. I came to some other conclusions too about things especially regarding the anesthesia the kids seem to have....I have gone though hell and back in frustraion, such that it sent me to the doctor with thee health symptoms...and during the PT session I listened to the chat going on and it struck me that if family is going to be so indifferent to things here, I can play that game too. Just not care a whit about what they kids etc are doing, places they are going etc. I am just not going to bother trying anymore to get them involved just to the extent that they show they care and think about dad....they can just live with it when the day comes he doesn't know them anymore. Just today he had our wedding photo, where we were dancing...he showed it to someone and the inscription on the back but couldn't remember where the picture was taken..what was the event and where was it...another smack .....and they just keep coming....
I still can't get my head around the idea of placement but my instincts tell me that if and when he begins the falling....if not before....it will be a really hard thing to do...and at the moment I feel a bit detached from everything but would bet when the issue of placement actually arrives, it will be horrible.
Coco, I am so happy for you. And it is so close, too! Sometimes when we have big problems they are just wrapped around big solutions and all we have to do is open!
thanks friends. It has been such a #@@++ week, though I am doing kind of , fairly, well. (?) He is changing every day, and every day, sobs in frustration. Sometimes he walks a bit, then 5 minutes later his legs are "stuck", and I have to wait and wait until he can move again. the nurse left me one of those belts so when he falls I have handles to help him up.
No matter how many towels I put around the toilet it is a soaking mess each morning. Darling when you are gone, will you be?, the bathroom is getting totally re done.
ok ok I am depressed today, knowing it will pass. I want to scream and cry and hit and gnash my teeth. Having that bi polar selfish person next door does not help, but thank God, she mostly isolates herself. Ugh I am simply trying to ignore that, in 10 days her husband will be here so I will not have to deal with her and her pills and addictions and oh I know how you feel statements, yeah sure.
Praying for you COCO, you are a real trooper. This too will pass. Do not worry about the neighbor, she has her own demons to battle. Keep your chin up things will get better.
I agree with Julia, let loose and scream for all you are worth! One of the best things I ever did for me was when I went in our backyard with a stack of old plates and threw them against a big tree while screaming like a mad woman. Man, did that feel good! :D
How is it going Coco, any more news?
Elaine, such a sweet thing for you to say. I am delighted to hear the love returned for you too ♥ I hope your visits are happy and filled with love and laughter ((hugs))
Hey Nikki it is always good to hear from you. Vickie, Shellseeker, and Julia thanks for letting me scream too! Instead of doing it verbally out here in the yard, I just spent the last 4 days in a frenzy of cleaning sorting out under the house, in the shed, the closets, and amazing what I got done. Now I am at the yard and going to sort those bloody tools that no one offered to help me with, even though I asked. It was always well later or I have a headache, or wait till my husband gets here. Yeah right.
I will be like the little hen that does all the work, and then when the harvest is done they all want their share. They will have to peck and scratch elsewhere.
The 10 day respite in Honolulu Veterans home is coming up soon, Dec. 3 thru 13th. I have made all the flights , 6 in all as I have to take him there and bring him back, and then fly back myself to Kona then back to get him. All in all it came to $500 for all the flights so not bad really. More on that later...I am off to town to do Costco and maybe a bit of beach, my 10 hour respite day.