Hi, I'm new to this so bear with me. My husband of 54 years was diagnosed with Alzheimers about two years ago but the early onset was quite a while before that when he kept goofing up the checkbook. He was a controller for a Fortune 500 company and retired after 30 years so not being able to handle the checkbook should have sent up warning flags.
Now from what I can read about the various stages he's about 5 1/2. Needs help bathing and dressing but is still quite mobile and communicative though some of the stuff he thinks he sees is delusional.
What I would like to have some input on is how to handle him when he gets ugly which happens every so often but not daily. I still work 3 days a week to help keep my sanity and I have a neigbor who keeps a close eye on him. We have two daughters who live in the area about 40 minutes away. The oldest one teaches and comes over one day a week during the summer and takes him out, I also take him to the Adult Day Care Center when possible one day. He often fights me on this as they are locked in the room, but they really like him and it shows.
Is there more that I can do that I haven't thought of? I have power of attorney and that helps as his signature is no longer legible. I would like to keep him home as long as possible but when he has a restless night and I have to work the next day that is difficult. Both of us are in our 70's and so far my health has been pretty good,
I'd love any feed back or experience that anyone can share with me. Carol
Welcome to the board Carol,
I just lost my sweet DH at 56 years old about a month and a half ago. He had Pick's disease and it also started out with the checkbook. He was a salesman for years and always as sharp as a tack so that was my first indication that something was up. After every test you can imagine which showed nothing, it was the neuropsychological testing that showed everything. After the visit to the neurologist he was put on Aricept & Namenda but I also requested an anti-depressant to help with what was to come. His doctor recommended Effexor and it did a wonderful job for my DH. I think because of his age and his sweet demeanor, he never really got ugly. Early on I also talked to him about what he wanted as far as his care and he wanted to be at home so at about stage 4 I hired in home caregivers, (Mom & daughter team) which he came to love. I still work full time so one of them was with him every day. I think it had a lot to do with the timing because I wanted him to get to know them before he progressed to a point where he would think they were strangers. You might also try to find things for him to do that he likes during the day that might keep him busy. Keeping a schedule really helps (doing the same things each day, ie. bathing, eating, walks etc) as this helps him feel secure and hopefully will reduce the ugly times. Keeping things simple and quiet around the house also helps. I think he probably gets very frustrated when he realizes that things are "normal" and he can't do the things he used to and he gets angry. If he had any hobbies or interests before, try to integrate some of those things into his day too but obviously at a level he can enjoy. You also need to take care of you too. Check with your local ALZ office if you haven't already, as they have many wonderful services and seminars that will help you cope. The 36 Hour Day is a dementia bible and also is a great source of information for you. I hope this has helped somewhat and please keep coming back...we are all here for you.
Thank you so much Janie, I appreciate all of your ideas. He's on Aricept and it sure helps. He had a cousin with Picks and boy was that ever sad. 56 is way too young to go. Jim seems content most of the time but not driving is the big bugaboo. His license is gone and right now I'm trying to get him off the insurance via the doctor to the state. Unfortunately, he was raised by his parents that work was the only saving grace and he never had any hobbies. I will talk with the doctor about the antidepressant on his next visit in 2 weeks. Thanks again, Carol
I'm sorry to hear of what you are going through. Do you have seperate bedrooms? Maybe that would help you to get some much needed rest. As for him being ugly, I don't know what to suggest. I guess try and ignore it and change the subject if you can. Also, get and take all the help you can get. You've got to keep your sanity and energy going in order to be able to help him as well. Think of yourself at times and get out with friends or by yourself, just to get a break. When kids or friends offer help, jump on it! Don't try to do it all yourself or you won't have a "self" left. I think this website will help you. I wish you all the best and many blessings. You've got your hands full. On a side note, would you mind posting some more of the signs you first noticed in your husband before he was diagnoised? That would be helpful to some of us who are just going through this, at the beginning. Thanks so much and hope you have a good day.
I am new to this, also. My husband has some ugly times which could be very hurtful but early on, I heard Coach Broyles (univ. of Arkansas coach and athletic director at one time) give a speech. His wife had AD and he said to remember that during these
ugly times, it is not your loved one that is talking, it is the disease. That has helped me some. I still have a hard time hearing it remembering that helps me cope.
Wondering Wife (karen)
Hi Wondering, thank you for the input. I know that when he's nasty it isn't normal behavior and cope as best I can. Fortunately I have a young neighbor who looks after him when I'm not at home. She'll come over at the drop of a hat when he gets ugly and somehow her visit usually does the trick. He has a doctor's appointment tomorrow and our youngest daughter will be with us. I hope the doctor will give him some additional meds to help keep him calmer. As far as I can ascertain he's regressing more quickly now. The delusions are hard for me to handle as he gets mad when I don't see what he's seeing. I sure have learned a lot in the past six months though.We'll have to prop each other up when we can.This is a great site for support.
I find that responding to comments about things I don't see or understand with a neutral comment, instead of arguing with DH or telling him that I don't see or understand, helps keep him calm. Based on clues I might say, "ok, we'll take care of that" or "I didn't know that. That reminds me of...." or something else that gives him the feeling that we're actually in sync even though we're not. It limits his frustration level and keeps him calmer.
My DH has developed a very strong sweet tooth since being diagnosed, and getting out ice cream for him always, always distracts him and cheers him up, just like a little kid. Since he's been losing weight with the disease, I also feel this is doing him some good.
My DH is also occasionally resistant to his day care center, although most of the time he's ok with it. The resistance is fading with time (my husband has been going to his center three-times a week for several months). I can usually distract him from being unhappy about going by reminding him that they have great coffee, and mentioning to him that they really appreciate how helpful he is as a volunteer since "he isn't bad-off like the other people." The center finds little chores for DH to do like carrying plates, etc., and when he's able to talk to me it's clear DH believes he is helping them.
The remaining days of the week, a lady comes to sit with him until our youngest gets home from high school (DH is 62). My DH is also about the same stage as your husband, and I think he's progressing faster now too...or at least he's losing more basic skills, so it appears that he's getting signficantly worse even though it might still be a steady progression. I can't let him be alone anymore, especially since we just had our first wandering episode a few weeks ago. He left the house without my knowledge to go for a "walk" and the police found him several miles away after 5 hours, at nearly 11:00 at night.
I agree with the ladies who say that having as much time as possible for yourself is very important. I don't know what I'd do without work, not only for the money that supports our family of 5 but for the normalcy that it gives me.
My DH also developed a sweet tooth and I remember when I could no longer let him stay alone. We never had any wandering episodes, thank God, but he paced alot. I know what you mean Beginning, that you are thankful for your job. I always looked forward to 8 hours of time to be with away in a normal situation. But I also loved coming home each day because he was SO happy to see me. Kind of like seeing someone you love after a long time away. My DH was also diagnosed young at 50 but thankfully our boys were pretty much out on their own. He also progressed pretty quickly toward the end and passed last May 13th. I miss him desperately but also know he is now at peace and I have to pick up the pieces and move on. I still wake up some days and find it hard to believe that he's gone and that I have to go on without him. It sounds like you have his daily care well under control and I tried daycare with My DH but it only lasted two days. After that I found two wonderful caregivers, Mom & daughter, who took care of him and he really liked them both. I pray for everyone here on this board to find strength in their daily struggles as I know how hard it is. Stay strong and be sure to take care of yourself too.
Hi Beginning and Janie,
The sweet tooth must sure be one of the signs. My DH has gained some weight though. I figured if he's happy that is the least of my worries. My part time job too keeps me grounded. As for Day Care, he goes one day a week and when the kids go back to school and our daughter is no longer available he'll go two days. They just love him there and the "old gals" are kept laughing most of the time. I do get some resistance but am insistent that they need him and most of the time he accepts that. He says, "Now I can go be an idiot and entertain them." I say,"you're so good at that. I know they miss you when you aren't there." They have two nurses on duty who are very competent.
So here's to more good days then bad ones and I'm sure we'll all survive with flying colors. Carol
I raise my hand to the sweet tooth thing. Mom because totally addicted to chocolate and my Dad is an ice cream phanatic! Dad actually made a deal with the AL administrator. They would move in if she would provide them with a fridge that had a freezer big enough for 2 gallons of ice cream. Even yesterday, with his unsteady gait and being lost in his own world, he managed to get himself a bowl of ice cream. As long as there is a spoon and bowl on the counter he can do the rest. Mom has her chocolate stash beside her chair. As long as those two spots are well stocks life is much better in their third floor world. Both have gained weight since going to AL because they get their treats and good meals!!
It is difficult enough dealing with a parent, I could not even imagine dealing with a DH as Mom has done and so many of your. My heart goes out to each of you.