Coco--I survived a verbal attack similar to what you described--friends said "she is acting like you gave him Alzheimer's". Obviously, you don't need that kind of additional pressure right now. My solution was to severely limit contact with that person (mostly via email) and distance myself. The stress caused by our husbands' illnesses alone is enough for one person to endure! Get caller ID on your phone--if you don't already have it--and screen your calls. This respite period is for you to decompress and to enjoy. You MORE than deserve it--xoxo.
you know Coco, you cannot allow yourself to be pistol whipped right now. its hard enough mentally to get thru your taking him in for first respite stays, much less having to deal with vicious relatives. remind yourself first that what you are doing is not only for yourself to recharge, but to prepare your dear Dado for a permanent placement where he will get the full time care HE NEEDS at this point. nobody knows his needs better than you and distant relatives who what to now stick their noses in your affairs should be calmly put in their place only if you think an excuse is warranted. most of the time excuses are not warranted with sporadic family. you make decisions for you and Dado now, and anyone who wants to offer their input should be made aware that you are not going to put up with verbal BS or intolerant opinions. nobody has your husbands best interests at heart more than you at this time. like mary75 had to go thru many many times, is to advise meddling relatives that anyone who upsets or tries to cause grief will have to be cut out of visitations and or contact. Dados well being must come first over any and all concerns for family /relatives. so dear coco, it may be somewhat difficult to get yourself into the frame of mind to try to enjoy this time alone. the first time i had an overnight respite, away after 11years, i was not so happy or able to enjoy myself either. it does become a bit easier with repetitions. please take this time to disconnect as much as possible and allow these few days to reflect and absorb the beauty of your surroundings. there will be time to think about all this later, so for now we all would like to know you will try to get the needed rest and relaxation you need. my best as always.. divvi
Dear Coco, please please take this time to rest and recharge. Can you put the phone on ignore?? If the respite folks need to contact you, they will find a way to reach you. UNPLUG the phone, rest, meditate, pray, rest.... this is a time for YOU not for selfish family or friends. Unfortuanately we have all had to deal with unreasonable selfish family members. Please, relax, rest, and then repeat, rest, relax and then repeat
Coco, I'm so sorry that you were subject to her nastiness. You'll find that most of us have had to deal with those kind of relatives. Since my DH passed away, I have written step-daughter out of my life completely. Please don't let those people get the best of you. You're having a tough enough time right now without that crap. We all have our arms around you .
Coco,Have a wonderful respite. I cannot imagine people screaming evil words at me while trying so hard to keep it together. Put them out of your mind they have the bad karma don't let them put it on you. You are loved and supported by us.
I am going to pick Dado up in Honolulu tomorrow. The first 4 days were hell with the family issues, the fear, the hopelessness.
but this past 4 days or so, I did manage to catch up on some needed sleep, plus, as I could do it now, I went for many long walks. I did spend one night at the Champagne ponds, thermally heated and crystal clear, and swam until I turned to rubber. Mister Turtle was there, and I told him hi from all of you.
Oh Coco, I'm glad that you had some restful time. I am in the middle of a 2 week respite trip. My DH has been in the Veterans home for 2 months now & I am 900 miles away visiting my friends & relatives in my hometown. As I write this I am sitting with my cousin while she gets her chemo treatment for lung cancer. I came here to take care of her for the 2 weeks I am here. But I am blessed with an awesome family & I have gotten together with my cousins & siblings & tomorrow I will see my best friend. It's hard being away from my DH for this long considering that I went & saw him almost everyday, but I knew I needed a break & my children encouraged me to go.
Please let us know how Dado did at the facility he was in. I know that you missed him. I also know that deciding on placement is such a difficult decision, but in our case the decision was made for me (because of his aggression). Please know that we are all here for you & I send you lots of (((hugs))) from Wisconsin.
Sweet Coco, I am sorry to hear even a moment, much less 4 days of your much needed respite was consumed with his families selfishness. I am however glad to hear that the other 4 days were restful for you. Did Mister Turtle say anything back? That’s when we have to start to worry <grin> Do please let us know how Dado and you are doing. Much love ((hugs))
off to the town again, will let you know when we get home.
Mr. Turtle did speak to me. He said, "I wish all those people that support you, and are sad, and trying, could come here and just look at me and pour their pain on me, I can take it. I have been here for almost 100 years and have seen it all. Tell them someday, somehow , it will all make sense. And tell them, I came right up to Patty cause I knew she needed me."
Hope all goes well on your return. Please keep us posted because we are want to know how things went for Dado...it helps others also. Take care dear friend.
I wish I could say all is going well. His stay at the facility had NO falls, of course they had bells and whistles on the bed and his chair, so every time he tried to move a nurse was there. Despite the fact that I watch his every move he has had THREE falls since we got home yesterday, one just now at 6 am and I could not get him up for a long time. He gets out of bed and RUNS to the bathroom , and falls. Once again here I am, lifting him and crying.
He seems to me even further along in memory failing, and now they have added Namenda to his Aricept. I am detecting more anger in him but will give it a chance.
And all the time he was in there, I was getting calls from one of his sisters, saying how easy he was, and could I take him home to Maui for Christmas. Fat chance. We will be lucky to make it to Christmas at this point. Family saw him in a FACILITY, all they had to do was to talk to him as he is in bed.
My good mood and hope is not good right now. Sorry. Life really is the craps right now. I have about had it.
Coco, I'm so sorry Dado is falling a lot again. THOSE people will see what they want to see. Step-daughter would say what a nice visit she had with DH when he was in the NH. Of course, she did ALL the talking so she thought that was nice.
At least, it sounds like he had good care in the facility. Be thankful for that.
You'll feel better again - it's the contrast between being away and then back into the fray. Even though it feel bad now. the break has done you good in the long run. As for no falls in care facility, all that means is that no falls have been reported to you (you might find a few unexplained bruises on him in the next few days). If he's running to the bathroom at home, he has run to the bathroom there.
thanks Carolyn* and Mary75*, I am so low right now.
I almost want to just let him fall and fall, until he cannot fall anymore. It is really bad.I have a wrenched neck already, and I used the belt to pick him up. I did forward a note to the doctor about it. Not that they can, or will, do anything.
Interesting comment on the unexplained bruises, that never even crossed my mind I am such a dope sometimes.
now he is physcotic, yelling and fretting and falling. I am about to call emergency, am awaiting return calls from doctor. No human being can handle this, the sick one, or the caregiver.
coco, so sorry to hear of the new issues at hand friend. sounds like your sweet Dado is moving very quickly into steeper stages - you said hes started namenda. some folks have adverse reaction to it especially if its in beginnings. maybe ask to reduce the dose if possible to minimum and see if it helps or ask his dr if maybe discontinue if he declines further. you sound worn out, maybe you will be able to move him into the home closer to you sooner than later if he doesnt improve.
and if me, i would definately have some ativan on hand to give if he gets radical or violent and you need to subdue him some.
CoCo...so sorry to hear the problems you are having. You can't wait to take action. He might really hurt himnself and/or you and you will then blame yourself. I know you remember how my Jim and Dado were almost on the same tract...well...you also will remember how fast Jim took a nose dive. It can happen in a flash. Don't hurt yourself....he needs to be where there are people that are strong and can take care of him. Have you gotten final approval for that place near you??? Wish I could be there to give you support. Like so many on here the loved ones are border line placment candidates. That has to be so difficult.
Just got back from our small local hospital. The doctors advised checking him out , so they did the usual urinary and blood tests. They lady doctor at this clinic which is only 20 minutes away, said, we could send him on the 2 hour drive to Hilo for Cat scan..but..as he did not smash his head it was likely pointless. No infections or negative results, it is just progression.
I called the ambulance guys on his 8th fall of the day, I just could not do it anymore. As placement is really soon, I was given some advice. If he falls and can't get up and I cannot manage, just place a futon under him, with a blanket, until he can get up. This I shall do.
The main doctor re iterated what I have been told here., that such a big change really throws them off, and likely that is why he had such a tough adjustment. All of the team is surprised at how quickly he is declining.
Talked to EVERYONE today, doctor in Honolulu,VA home nurse aide on our island and our VA social worker too. They helped me so much, and informed me that the Medicaid has gone through already, and placement is just around the corner. They ready to deal with any family that gives me grief, and has told me just to direct calls to them.
Grateful is the word that comes to mind, happy maybe down the road.
If I can help anyone with Medicaid info I would be happy to let you know the process how we did it. There must be a thread somewhere, I will pop it up and share what I have learned.
For the moment,,,he sleeps. I hope and pray for a better night, and one for you all too.
no rest again, but I am not whining..I hope. Up most of the night with him peeing all over the floor, did not even try to make it to bathroom. This must be my chance to put the portable potty in there in hopes he will use it, and not miss too badly.
He looks like he is dying, when he sleeps one eye is half open and rolled up. I am pretty sure he does not really know much now, something happened this past few days and a part of his brain has gone. Now I pray for peace and freedom for him, there is nothing that he ever smiles about any more.
And to you all too, somehow, we have to keep our hearts open and receptive, and to shut out evil. I talked to our VA social worker on the phone for over an hour yesterday, and learned so much. She has been in this for 30 years and has seen it all. When you think there is no way out, no hope, it seems we are sent small angels.
COCO, my dh does this with the eye lids. its disturbing to look at when they sleep and gives a very strange appearance. i was told that it is from loss of muscle mass and when they have little exercise later in the disease. they lose total body muscle mass and this includes the fatty deposits behind the eye socket and in the face muscles. when this happens the eye doesnt close all the way and may become dried out - use of rewetting drops helps. the face muscles sag and also allows the jaw to drop open and can cause the 0 mouth that becomes prevalent in latter stages of disease. mouth open and eyes half closed, my dh has this going on now this year and its disturbing to see him while he sleeps. it does give an eery look and appears they are on last legs.
i hope you and your dado find the help you need now, and that peace and calm can be for all of us. divvi
Coco....My heart and prayers are for you and Dado. Do you have hospice in your area?? If so, you might want to ask your dr. to contact them to evaluate Dado. They can be such a help to you and they can send someone to help you night or day and provide you with the medications you need.
Looking back I do think when Jim went to the ALF so I could have 2 weeks respite is when he really started his down hill slide. Please keep us posted and know that you are not alone in this journey.
Divvi...I find your comments very interesting. My dh did that with his eyes and it does look strange. Another thing I noticed because he had lost so much weight was that his teeth seemed to big for his mouth. His mouth was in an open position when he slept and I could see the teeth in the back of his mouth and they looked too big for his mouth.
As to placement, even thought the Medicaid has come through quickly, it turns out the Adult Foster Homes here cannot take anyone that falls...huge hopes dashed. the only alternatives are large nursing homes over 2 hours from here...and whatever is best for him is what should happen.
I am waiting to hear from our social worker, I need her assistance as I am just too tired. Honestly I feel like I may have to drop him, and me, on the steps of the hospital. I just don't know how one goes on with no sleep. Maybe I have to lock him in his room at night and wear earplugs.
Yes I wish I could sound better, I am really not though. Mainly because, the tiredness is too much. How I hope to come back here with more uplifting news.
Coco....this is only a suggestion and it might or not might work...you know how bad it is for you and you have a very special need because of where you live. Is there any posibility that your dr. can request hospice care for you? This would be a help and they can provide you with the medications you could use which might help you in caring for Dado especially at night. Adivan should be able to put him to sleep, at least for several hours during the night...and if push comes to shove...they would even provide you with morphine. They understand that a small woman cannot be picking a bigger man up off the floor time and time again. They would also understand how your condition is different then most of us that live in the States and you just can't get to a facility on short notice.
I know I was fearful the first time I had to give Jim morphine Hospice had prescribed. But, hour after hour of him attempting to get out of bed when he couldn't even stand up by himself let alone walk. Was more then I could handle and I had my son-in-law here to help me and he is 6'2" and over two hundred pounds. When I called the Hospice office...they didn't hesitate...they said...give him 5mg of morphine...before I could do that they had called me back and said...give him 10 mg now and 5 mg every 4 hours until he is under control. They sent a nurse out and it took several more doses from the nurse to get him under control to stay in bed and in a relaxed state. After that, I didn't hesitate to use it to get him under control. WE gals are not SUPERMAN...Most of us are probably afraid to give our spouse morphine...but, after the first time you will not hesitate to do it again if it worked, because you know this will be the only way to get him under control. Or Hospice may have other drugs to help you.
I will contact them for sure JudithKB*, and you really had the same thing as us here. The getting up out of bed thing, well in our case it is HIM that keeps getting up and I just cannot stop him. I have been giving him a larger dose of Seroquel at 3 am and at least he sleeps in in the morning, after getting up EVERY 15 minutes. As I cannot wake up every time, he has fallen and is covered in bruises.
I have had to face the decision of placing him far from home. Just talked to our nurse and she is helping with the process to get him in the Veterans home 2 hours from here. I just faxed the application and noted that Medicaid has just been approved.
In the meantime, I am thinking of calling this Adult home just up the road, and asking for them to take him for a night or two, with private pay. I cannot believe what this little body and mind of mine have been doing. So so sore I should go for a massage too.
My tentative plan is to keep him somewhere until he becomes bedbound, which could be real soon. Then I would like to bring him home. to hell with worrying about work and money, if I can sleep at night and do not have to keep picking him up and lifting him, I will gladly change and bathe him in bed. Life and love are too precious and I do love him so. I know I will not regret it ever.
(Judith KB*) for all your continuing love and support despite your grief, I love you dear one.
When they begin the falling numerous times during the day they need to be bed bound. Of course that is easy to say and not easy to do. I had a hospital bed for Jim and had the rails up...then I took three chaits and tied them together with a rope I had made out of a sheet torn into strips and tied to the hospital bed rails and then I placed his hospital type eating tray hospice had ordered and tied that to the chairs and he still tried to push these aside and/or get at the head of the bed or foot of th bed in a sideways position with his feet hanging over the rails and his head banging against the rails on the other side of the bed. This was a man that was weak and probably weighed less then 115 pounds. His desire to get out of that bed was uncontrollable.
However, once I got over the fear of using the morphine then I had it under control. I kept very accurate records when I would use it...but, it was the only thing that got him controlled. The hospice dr. had already told me he had probably less then 2 weeks to live and I didn't want to send him any place for that length of time. The morphine worked perfectly and as you know...he had a painless and peaceful passing.
If you can get him on some drug...that will keep him calm then he can be bed bound. You need to call your dr. and get him to order hospice....they will help you This may sound terrible to some on here...but, bed bound and drugged may be your only solution with him out of control and his falling. We do what we have to do....
Keep us posted...I worry about you when I don't hear anything.
Coco....I just remembered this and I forgot to tell you. Jim got on hospice through the VA dr. They have Dado's records and call them and request that the dr. order hospice for him. They will do it immediately. Even the social worker you are talking to should call the VA and tell them you need help from hospice for some stronger medications to control him and keep him in bed. They should cooperate with you... Good Luck dear one.
So sorry dear ((Coco)) Such a hard situation you are in right now.... glad to know you have these angels helping you with the process. Much love and lots and lots of ((hugs))