I am putting up some discussion topics carried over from the old boards, so if anyone wants to continue the discussion started there, they can do so here. I'm trying to make things as organized and easy as possible. joang
Just got back from Boston for my wifes 6 month appt. Did another PET, MRI and neuro psyche test. Unfortunately, the Aricept and Namenda have done little to slow her progression. She is now at a moderate/ stage 6. The AD in other areas of her brain has now progressed and shown up on the latest MRI in the frontal lobes. It wasn't there 6 months ago. The studies and age cut off of 50, shes 42 have kept her out of any trial studies. The Drs. are giving me time frame estimates now. Even they are taken by the rapid rate her EOAD has gone. All I have done these last few days since I got back is tell my sons and family the grim news. I pray God gives me the strength and resolve to get through this. Just thought you would like to know.
So sorry for your bad news, Tony. I have a couple more months before I take Kathy back for a recheck. I'm not expecting any better news than yours according to the way she's acting at home. Wish I could say something that would help your sorrow. Hang in there and do the best that you can for her and your kids. Peace to you.
EOAD / AD can rip you apart. Today my 11 year old came to me and said "dad, all I want for Christmas is for mom to get better" I told him to pray for her and went to be alone and cry. They say kids tend to be resilient I hope so.
By resilient, I think what is meant relative to children, is that they will learn the difficult life lessons - compassion, strength, reality (that life isn't always fair), appreciation for life, appreciation for the caregiver parent - from whatever disease their parent is fighting. These lessons will stay with them forever, and they will go forward with their lives, using the lessons learned. I don't know if that is any help to you, but that is how it worked with my sister and me, when we lost our mother at a young age.
Oh Tony...my heart breaks for you and your children...I am so happy my kids were grown before AD came to "live" at our house. But, of course, now our grandkids deal with it. Only the oldest grandson who is 8 had any contact with Butch before he got so bad, but the three youngest always go into "PoPo's" room and sometimes they like to work the hospital bed and are fascinated by the fact that this "old" man messes in his drawers....! One of my twin 3 year old grandsons asked me one day "Does PoPo want to go see Jesus?" I told him that I thought he did but the angels didn't have his room ready yet.
Tony, you have the roughest job in the world....being Dad and Mom while the real Mom is still around....you are to be admired....
EOAD is so hard for so many different reasons. We were at church last night hanging around before choir practice and someone came up to Robert and said "Hey Robert, What is it that you do for a living?" Robert just stared (more like glared) at him. I had to step in and say Oh he's a retired social worker. Of course, they could tell by looking at Robert that he was much too young to be retired.
Robert will never like that guy now. Robert is so negative and grouchy and complains about everything. Everytime we leave church, he goes into his rant. It drives me crazy..... He views everyone as out to get him - including me and the kids. He's always looking for the alternative reason for everything. If I say I'm going out for a while, he thinks it's to meet some guy somewhere. I can not tell him about anything at work - because it's "who's that, is he an engineer or something?" Always testing to see why I'm talking about that person. It is exhausting. I would just as soon not talk to him. But then I get the "You never talk to me! You never pay attention to me!"
We see his psychiatrist tomorrow. I'm going to bring up the aggitation and aggression. I hope there is a med he can take to alleviate some of this. I really need a break from him and I know the kids do too. I dreamt last night about just leaving - how we would split the property up, etc... That's when you know you really need a break. But, I can't get away from him. He's always right there. He never lets me out of his sight even at church.... He's always afraid that I'm gonna talk to somebody. I'm really about to lose my mind.
I really wish that they could empathize a little with what the caregiver and family goes through. The only thing Robert sees is how mistreated he is. I'm tired of his dirty looks. I'm tired of listening to him berate other people. I'm just tired.
Paranoia is definitely part of Alzheimer's. I remember when Sid's aunt had it, she accused the nephew who watched out for her, of sneaking into her apartment in the middle of the night and stealing her money.
Definitely talk to the psychiatrist and/or neurologist about it. Let us know what happens.
You are fast approaching burn out and need a break. Maybe Robert's parents could take him for a couple of days?
FYI my EOAD wife was also very paranoid in her earlier stages. She also confabulated stories about me, where I was who I was with ect,ect. These symptoms have all subsided thankfully as she has progresses to a stage 6.
We saw the psychiatrist today. Robert did well on the tests and the psych prescribed a low dose of respiradol. Hopefully, that will help with the paranoia/agression.
It's good to know that other people have been through this, but it is just another confirmation that we really are dealing with AD or something like it. Sometimes, I allow myself to hope that this is all going to go away and he will be normal again. Of course, I'm also beginning to forget what "normal" was like.
I have a week and a half off work coming up over Christmas. I am really looking forward to it.
Leighanne: My husband stuck closer to me than Velcro. He was terrified he'd lose me because he lived in 'outer space' so to speak and I was his anchor. Having me in sight was the only way he knew which way was up--but it drove me crazy! I was lucky, from time to time our adult son or his wife would spell me and my husband felt safe with them, so hopefully you can have someone relieve you now and then. It really makes a big difference and you sound like you are nearing burnout. It won't help anyone if you get sick. Day care was also a big help. I told him he was going to 'work' and he felt important about that. Try to give Leighanne some special time and attention over your vacation week. You deserve it.
Yes, Leighanne, I agree with Betty; during your vacation, try to arrange some time for yourself even if its few hours at beginning and few hours end of time off. You need it and You deserve it. Thanks for sharing, PAT
Leighanne, I hope you can get away even for a few hours over Christmas, if you live in Canada you can access a program called home support. a trained person will come into your home and stay with your husband for a couple of hours a day so you can take a break. Sending you warm hugs and lots of emotional support. kathy
You are amazing!!! I just read your posts about your struggle to place your husband and yet, here you are encouraging me!!!! Thank you for your support!!!!
I hope you have a very Merry Christmas and that the Lord will provide you with His peace that passes all understanding with regards to your husband's placement.
thank you Leighanne, we really do need to all stick together on this journey. I did get some very exciting news today, we are going to be grandparents for the first time in June . my husband is very excited, it is nice to see him smiling and happy. He only remembers for a few minutes at a time but that is ok :) take care and Merry Christmas to you also. Kathy
Yes Kathy, Your first grandchild will be such a wonderful happening to you and yours. We just had our 6th grandchild and all are such blessings for us. This was a big surprise because they had been trying to have a baby for 9 years. To me it was God's blessing for my daughter who was so close to her dad but this baby will keep her busy and not dwell on the inevitible. And since I can't work anymore I actually get to spend more time with this grandson who is almost 3 mths and yes his papa loves him so much..
I am very excited, and I keep trying not to cry because the baby will never know JR as the person he was. But I am sure our son and our whole family will keep the real JR alive for the baby. It will be good to have something positive to think about.
My daughter said the same thing today. Cayden would never know his papa as the other grandchildren did. Yes please keep focused on the positive. Its all we have to pull from. But yes your joy will come as he grows. Do you know boy or girl yet? Keep us posted. Thanks for sharing PAT
Kathy, Know that the positive is your blessing coming. And yes, your dreams of this baby! The real thing will come soon and its just so awesome to become a grandparent. When you hold that baby for the 1st time you will feel the true meaning of the words; my grandchild. I know I am babbling but its so exciting to know their lives are so special and we made them that made them. Thanks for sharing your good news, and looking forward to hearing more of this new baby coming PAT