Hi all Well this about the third time I have been fired from my JOB by my DH. He has left ADS except for one day . He says the staff on that day are alright. I have been fired because he wants his independence back and he says just because he has Dementia does not mean he has lost his intelligence. I have helped him, not done for him, to get all the care he will need should I have an illness and can't care for him. Now he is so mean to me and so nice to others and will take the advise of others over mine. It makes it hard to keep things on the up and up and to keep him safe. He has been diagnosed as having no sense of danger. Leaving him alone is not an option and I am on the verge of a meltdown. They tell me it will get easier as he progresses farther, but for now just stay in the background and watch and keep him safe as best you can. Breaks your heart to see this struggle and to have to just let it happen.
It's all heartbreaking Jazzy. It must be a nightmare for him losing gradually what he was. But it just has to be that only us spouses grasp the real horror of this disease - and have to deal with all it's effects.
Jazzy: I could almost cry after reading your post. I went thru the same situation with my DW. But, the dr prescribed Xanax and eventually Seroquel and they were life savers. No two people are alike, but, I pray that you get some help and things improve soon.
Jazzy, my heart bleeds for you! BTW, I tried to send you an email using the address you have posted, but it came back to me. You need a big {{{{hug}}}}!
Jazzy, yes, these are difficult imes indeed, perhaps the hardest to go through. But you are strong and will get through this phase and maybe even wish he was back in this phase as he progresses. My recommendation is to speak with his dr and get him on some anti-anxiety meds to help you both weather this phase. Each person is different but when dh was dxd the dr put him on Celexa. It only helped a little bit but eventually we found a good med combo which included Seroquel. My spouse has agitation/aggression issues so he's needed additional meds with the seroquel. The seroquel was and continues to be a lifesaver for us both.
Jazzy: If the dr prescribes Seroquel, ask him if Astra Zenica will help with the cost. I don't know what kind of insurance you have, but, the medicine is very expensive (I paid $800.00 for one months supply when we were in the doughnut hole), but, with the mfgrs help, the next supply only cost me $25.00. The literature the dr gave me said that there was an income limit in order to get the help, but, the nurse said that the company doesn't pay any attention to that part of the application. At that time, they approved everyone that applied. I don't know if that is still their policy, but, it is worth a try.
Since there is a generic available for Seroquel the manufacturer may not help anymore. The generic is also extremely expensive. I'm not sure it is helping.
Jazzy, in the last several months my DH has been very angry with me because he thinks I control everything. He tells his caregiver that we are getting a divorce because he loves that other girl (a younger me). He has no awareness of his impairment so it was no use for me to tell him that because of his memory problems, I would need to do this or that. He also now sometimes argues about going to the day program, saying that no one there knows what they are doing. I continue to push him there, because he really benefits from those structured activities. At home he is just lost nowadays. He paces through the house or wanders around (or tries to escape) but mostly spends time in his room or upstairs away from me. So, it sounds as if you and I might be dealing with some similar behaviors.
The one thing I've read about often but am just now experiencing is that he is rarely "here" anymore. He is all caught up in his head and does not know who I am. This has all happened within the last few weeks. I find myself searching his face to see if he really knows who I am so that I can connect in some way and tell him that I love him. Most of the time he very politely thanks me and then walks away. As much as I've read on these boards about this stage, I wasn't prepared for just how gut-wrenchingly painful this is.
He carries around a picture of me from about 10 years back and does not know where 'she' is but wants and loves her. He has now conjured up stories about how she is injured or dead, but always lost. I can only try to comfort him that 'she' is ok and everything is alright. And then I go somewhere else and cry.
Hi. Thanks all bqd, I will check that out and make sure it is right then I would love an email from you.
Yesterday I had to put down my pet dog. He was such a help with calming Dh but they found he had ,Cushing and now lymphoma and was in pain. This is a real set back for DH as the little dog just seemed to know when DH needed calming. It was a bad day. We had to put his dog down in Nov as he has pancreatic cancer and DH was upset but OK. DH has no emotions anymore just functions and goes along as if nothing is wrong but I see it and he gets very upset ifI try to help. This is an awful disease. They can't see the changes and that makes it difficult as they just carry on and try to be normal. I have decided to get daycare back in on Thursdays and he goes to ADS on Wednesday so that will help give me a break. He will not like having the caregivers in the house but it is that or go back to ADS. He is being retested on the 30 th but I don't expect any changes. He is referred to at some time as t" the petulant child" and it is a good description.
For most of 2010, all of 2011 and pretty much until his death, I could do very few things correctly according to my husband.
On top of everything else (h had FTD) the emotional exhaustion of this seemed beyond belief. I enjoy singing and often used it as stress relief. Not opera arias but mostly 80's and 90's music that was "the music of our times"; music we had enjoyed together. Until, that is, h decided that this singing was a terrible thing. So was the sound of the doorbell, which I disconnected pretty quickly, then it was the sound of a ringing phone; whatever sound it made, tone, chime, or whatever. So, I changed it to flash/silence and took the phone out of his bedroom. He had this large mission style recliner with the long curving arms and he would clench his hands on them and I knew an outburst was coming.
He was always pretty compliant with his meds. We had long passed the point where he could fill his med tray even on a daily basis. I brought each dosage to him. Never let him see the containers; just had the pills in the palm of my hand. If I did it this way he would accept what I gave him. So, he would take them and the routine I developed was to say "thank you" and as mentioned upthread he would politely thank me and look at me with those blank, blank eyes.
Likewise, Jazzy, I had to take our dear dog, Bozena, to be euthanized last Spring. She was old and starting to show pain. He didn't even realize she was gone. It just didn't register. I am so sorry for your losses.
Thanks for your support. This week has been tough. Charlotte, he is being tested to see how he has advanced in the disease. This one is being done by his Geriatric Nurse but the main ones were done by a neuro geriatric phycologist. He did two and a half hours of intense testing and diagnosed Him with probable ( as they can't do 100% until postmortem) Bv Varient FTD, AD and Vascular Dementia. Now they retest every year or so as a file update and to be able to know how advanced he has gotten in this last year. My DH has no insight and believes it is me with the illness not him. He feels that if he can't do certain things , then I shouldn't either or vice versa. Where we live we have " memory Clinics that are staff trained to help diagnose possible Dementia and then they are sent to the Mental health Outreach team. This is a great system and they will even come right to your home so the patient is comfortable in his own environment. They also have a Crisis team that are available 24/7 to help me if things get out of hand. I was so blessed to find this team. They are great. The is even a Social Worker that I visit every two weeks to help me cope. They watch me pretty close for caregiver burnout as he is pretty hard on me. He still takes care of his Meds and is in fairly good physical shape but that's as far as it goes. Just looking at him tells you nothing.
jazzy I hope you have a better week. and yes the losses are overwhelming sometimes. so sorry about your dear pet. they are are lifelines sometimes to sanity during these long years of caregiving. hugs. divvi
Thanks My DH had another bad dream and called out for our little dog to come and save him from the bad guys. He has had a bad few days and felt He is being boxed in with no time alone. He always has someone around but I can't leave him as he has no sense of danger. I think, now that summer upon us that he will be better at finding time alone as he will be able to go out on the porch and the yard and maybe that will help. They checked his body mass and so far it is still good. His arms are thin and the skin is beginning to hang. I guess I have been rehired again!!
Things are better now. He has been very quiet lately and sort of sad. He had a bad time last week because he thought that he didn't have the disease anymore and didn't need caregivers or ADS but not so. Since then I have changed my way of caring for him. I do nothing and just let him go ahead and do for himself. He hasn't said anything about the change but so far it is working out alright. It is strange for me after 42 years of taking care of everything in the home, to just sit back and only do the meals and some cleaning. My job of wife and Mother have all gone and I just feel like I now have no purpose. I am looking for something's to do outside our home but with summer coming not much going on until things start up again in the fall. I guess it will be lots of reading. T.V stinks! I wonder how long this phase will last and I will be back on duty again. This is all so up and down. Will there ever be a normality to my life??
Jazzy: They told me that "this is the new normal". No, things will never go back to the way they once were and I had a terrible time accepting that. I wasted a lot of energy trying to make them like they used to be. Guess what? I didn't succeed.
The other part of your situation was just the opposite when my DW was sick. She quit doing anything in the house and I became the cook, cleaning lady, laundry, etc., for the first time in my life. I also gave her all of her meds and kept them locked up away from her.
But, (and this sounds strange to you now) I would do it all over again. Now understand, I wouldn't have made that statement when I was going thru that every day, but, time changes things. And it will for you also. Just hang in there.
Jazzy, are we married to the same man? haha My H is mean to me and nice to me too. I just leave him alone when he wants to be left alone because he wants to do everything for himself too. It is upsetting because he does so many things wrong and then just says nothing when I have to fix his mistakes. Oh well, we are on this road together and just know there are many of us in the same boat and you can vent to us and we will know exactly what you are feeling.
Deb He won't allow me to help so I have to just sit and watch then when he can't see tools that are right there he gets ticked. It is much better now that I have decided to just let him go to it and stay out of the way unless asked. He is now hoping that he doesn't have AD or Vascular anymore as he passed the Moka test last week, but that is no use as far as I can see. He is still not able to do the things he did before except that the Meds keep him from screaming and swearing at me as much as before. This disease is confusion to the ultimate!!! I will survive!!!
The Moka test sounds very similar to the MMSE. The scoring, 30 point maximum with 26 or above being normal, is the same, as is the 10 minutes it takes to administer the exam. My wife scored a 30 a few weeks ago. It is a poor exam for dementia. If you know where you are and when you are, you should score normal. It does not measure behavior.
Seriously .... I can relate to hubby trying to do things and then I have to go and fix them. Or he says we should do something and I can see that it is the wrong decision. Before I would sneak around but now I just say no or worst I just ignore it. It's tough taking over everything but when you have a child you sometimes have to step in to protect them.
I think it must be a similar test. He passes it every time and so have others that I know of. I think I will just go by his behaviour from now on and no more testing. I think it just gives him false hope that there is nothing wrong with him. Right now he is in good behaviour and attitude but has lots of memory difficulties and is doing the " i know how to do everything and I don't need any help thank you very much. Where is the screwdriver, did you take it? Where is the pliers, and the little piece of foam I was using?" Everything is right there in front of him but sometimes he can't see it. By the way "Happy Mothers Day to all you lovely ladies"