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    gottagohome posted:
    I thought I would give an update on my friend with Alzheimers. I took him to the new neuro dr yesterday. He wasn't able to do simple commands, such as his name,DOB, my name, etc. The dr seemed surprised and said he was very advanced with the disease. He said to take him off Namenda first, if no changes in 2 weeks, then we'll know it isn't helping. Then do the same with the Aricept. Side effects, luckily were never an issue. He said that the heart and lungs are keeping him alive, but the brain...then he shook his head. When I said that his mother died from this, (as did my parents), he said that is why he was younger when diagnosed. He said it starts earlier in life, than the parent. Is there any validity in this? I have never been told this before. My friend becsame upset after we left, and no matter where I took him, as I usually did, he didn't relax. I ended up leaving the assisted living, as he told me I was crazy, just do what I want, leave. The girl said he was like a child and would be fine after I left. So I did. An emotional and very sad day. I think I am the one with a problem. I probably should not spend so much time there every day, he wouldn't know. But, after 8 years, it's hard not to be there, since none of the fmily have cared or even wondered where he is. Any thoughts? Thanks
    davedsel57 responded:
    I'm sorry you are seeing your friend's symptoms advance. I know how hard it is to see some you care for have more problems.

    I don't know what the statistics and research says, but it makes sense to me that someone whose parents have had Dementia are more prone to getting it and maybe earlier in life.

    As hard as it may be, you just need to be patient with your friend. My dad has times like that where he will call and yell about something, then be totally rational a few hours later. I'm sure your friend still enjoys your visits and spending time with you.

    Praying for you as you deal with these difficult issues.
    Click on my user name or avatar picture to read my story.

    Blessings, Dave
    cjh1203 responded:
    I'm so sorry that your friend has gotten worse.

    He may have been upset after his visit just because of the disruption in his routine, especially because it was a new doctor. The new place and new doctor may just have been overwhelming and scary for him.

    I know that if a parent has early-onset Alzheimer's (diagnosis before age 65), it is more likely that a child will also develop the early-onset form, but I hadn't heard that someone who has a parent with regular Alzheimer's would develop it at an earlier age. I really don't know.

    How sad that your friend's family doesn't care about him. He's very lucky to have you for a friend. I don't think you have a problem -- it's just a very emotional situation, and no two days ever seem to be the same with Alzheimer's.

    As Dave said, patience is key, although it can seem almost impossible at times. Alzheimer's patients do become like children after a while, and they can have such a difficult time controlling their emotions. So many things become enormously stressful to them and their reactions often come from fear or distress. Try not to take what he says too personally; it's the disease saying those things to you, and not him.

    We would all be fortunate to have a friend like you, who will be there even through the worst times in life. You're a good person.

    Take care.
    Judith L London, PhD responded:

    You are a wonderful friend.

    In my experience, even though a person may show deterioration and it is not due to an additional medical infection, removing Namenda or Aricept usually results in a dramatic downturn, and when the Namenda or Aricept is restored, it doesn't work as well. Perhaps a second opinion from a geriatric neurologist would clarify the situation.

    Your friend's behavior reflected how upsetting the entire experience was for him. He does have feelings even though he cannot explain why he feels that way.

    There is a gene associated with onset of Alzheimer's as early as in one's 60's - the APOEe4 gene - that is present in some of the population who never get Alzheimer's and in some of the people with Alzheimer's. It may raise the probability of getting the disease.

    The good news is that a recent study reports that for those with the APOEe4 gene who engage in aerobic exercise regularly, their risk of getting Alzheimer's falls to the same level as people without this gene.

    Keep on letting us know how it goes,

    gottagohome replied to Judith L London, PhD's response:
    Just wanted to thank you for the information and support. It is great to have a discussion with others about advanced cases. My daughter is a speech path for a rehab co at a great facility and she provides insight. Hard to believe after losing both parents to this, I still have questions.. But my father had a fall, broke his hip, and succumbed to the surgery in 3 weeks. My mom was 90 and other issues, so the cause was "congestive heart failure". My question now is, even though there is no way to know with this disease, if my friend continues to eat, drink, doesn't sleep all day, and has a healthy heart and lungs, how is it that the disease will take his life? It's not like ALS, so I was just curious, as he ws diagnosed as advanced last week. By the way, he remains very kind to all. I feel sad when he tries to express a thought but the words dont come But we work through it! To say it will be the cause I guess, is what confuses and concerns me! Good luck to all who are experiencing this, but with a source such as this, life is much easier! Thanks, again.
    gottagohome replied to gottagohome's response:
    I guess I am replying to myslf! I just read in this report, the stages of Alzheimers. I just thought I would say that the symptoms given in moderate and advanced are not always the case. My friend, diagnosed as advanced, doesn't experience many of the moderate symptoms and none of the advanced, as in the article! I just wanted to say not to be afraid, things may not be so cut and dry in every case. We are so lucky to have this line of communication!
    2010guardian responded:
    Dear gottagohome,

    This is such a sad time--when the medicine stops working. This has been a concern for me also. My husband is in the moderate stage. I asked the doctor, "How do I know when the medicine isn't working?" He said, "When he doesn't recognize his house anymore." This is so scary for me. I really feel he is a long way from that, but I think there should be earlier symptoms.

    I feel that you should protect yourself emotionally and mentally. Do something good for yourself. Spend time with friends, etc.

    My prayers are with you.

    gottagohome replied to 2010guardian's response:
    Thank you, Kathy. My friend probably would not recognize the home, but I drive in the driveway with him! I am just going to try watching really close for any changes in the coming days and if I notice a change, make sure he goes back on the Namenda. My friend was diagnosed after an accident, then MRI in 2008. But he was forgetful a few years before. I keep hearing 8 years...We know each is different. You sound to have good control of your situation. Today, I received an e-mail from a friend, of a report regarding the use of coconut oil and the ketones... I also heard 1 in 8 of us will be diagnosed. I wish you strength and good health. I'm just happy that he recognizes me as someone he knows when I walk in the door! Those are the happy times, aren't they?! In friendship, Shelley
    2010guardian replied to gottagohome's response:
    Yes, Shelley, those are the happy times when you can share a special moment.
    It is scarry for me to think about my husband going off the medicines. Has your friend been on the combination therapy of Aricept and Naminda?

    When my husband was first diagnosed, he was in bad shape. He could hardly function. As soon as he went on the Naminda, he improved. Then he was put on Aricept. With this combination therapy, he came back to almost normal. He has his slow and sometimes disoriented times at morning, but by the time we eat lunch, he is doing fairly well. When something strange is going on with him, it may be happening for 3 or 4 days before he tells me. The latest is that he seems to see something to step over, maybe a shadow, or he thinks he needs to step down and with that, it hurts his back.

    If I were you, I think I'd get another opinion about stopping the Naminda. I wish the best for both of you.

    gottagohome replied to 2010guardian's response:
    Hello again! My friend was on both Aricept and Namenda when he "returned" in 2010, so that would be 3 1/2 yrs. But his accident was in Aug. 2008, and that is when they found it on the MRI. He was only mildly forgetful before the accident. So when I saw him 2 years later, it was a shock. Luckily, there have been no side effects with the drugs. I am so glad both have done so well for your husband, and they have not bothered his system. How long as he been on them? Has he lost much weight? Ron has, and doesn't eat well. But he is still drinking well. I supplement that with some sweets, which he loves. They say that the sweet tastebuds are last to go. My daughter says they even sprinkle sugar on the food where she works, ( a speech path), Not so tasty to me! It is good that your husband can articulate so well. Ron has trouble finding words and gives up, so I try to "help" him with that. He has trouble getting into bed, he kind of climbs in and has to try and turn around and it's hard to not be too close to the headboard. Your comments about your husband brought that to mind. His brain must visualize some things in a distorted way. As long as I take him to the little lake most every day, if only for 15-30 min. he is happy. I'm watching him closely, each day, regarding the Namenda. Take care of yourself! Shelley
    2010guardian replied to gottagohome's response:
    Dear Shelley,
    How sad that the disease progressed so rapidly after the accident. I don't begin to understand that.
    My husband, Ken, was diagnosed in Sept. 2009. He was in the moderate stage at that time. Two days after diagnoses, he decided to stop driving after I told him he almost killed a father and 3 children. Finally all the 'crazies' began to make sense. He immediately started on Namenda and then Aricept. He was slightly nausious one day but after that he had no side effects. He is also diabetic. He recently has had his Metaformin and Glyberide reduced. The Pharmacist said that now he would start eating less and lose some weight. He has lost a couple of lbs. but is still very overweight.
    Ken also has trouble with words, but he just stops and soon he'll finish what he was trying to say.
    Getting in and out of bed is an effort. He was falling out of bed and I bought a bed rail that can be short or long. I keep it short and it helps him sit up.
    Our latest accomplishment is as of last night, he is wearing disposable 'shorts'. It was a real effort finding them big enough. I really didn't have the nerve to talk to him about wearing them because of his male ego. My daughter pushed it and thanks to her and Carol, in this support group, I decided to check them out. One morning he felt so bad about wetting the bed that I told him I had looked at the disposable 'shorts' and if he thought he wanted to try some. He said, 'whatever it takes.' I assure him that he cannot help what he is doing. Last night he had a 'dry' night and tonight he asked me where his pants were. Hopefully I'll have less laundry to do.
    Going to the little lake is perfect. Looking at the water is so peaceful. I would do that also when needed. Ken has been a 'water' person all his life, fishing, boating, Navy, etc. We recently sold our pontoon and camper.
    Thanks for sharing. It really helps to share and support each other.
    gottagohome replied to 2010guardian's response:
    I had no idea that there has been so much for you to deal with, diabetes and all. Ron is now about 5'8" and 158 lbs dressed, with shoes on. He has been healthy, other than hearing loss. Which after losing 2 new aids last spring, is not a big deal, anyway, in the grand scheme of things. He didn't want the Depends underwear at first, but he didn't argue the point long. He has always liked to dress well, and this helps him to do so. They keep a plastic cover on the mattress, but it was just starting to be a problem when I moved him. Now, he again says when he needs to go, which hadn't been the case when he was given so much (unneeded) Haldol. We even left the lake today, as he needed to go and the restrooms were locked, and he "didn't like it",( the feeling). Isn't it something, what we choose to speak about?! Today, I went to my dr. for my yearly check up and Ron had been going to the same dr since before we met. however, he no longer is. I talked about the meds. He asked if I had seen him improve with them. I said that he was already on them when he returned, but had digressed so much since July. He said, in his thoughts, there was my answer, they were not helping now and he didn't need the potenial gastrointestinal side effects. That did make sense, and I have respected this dr for 15 yrs or so. I am sorry for the many life changes you are experiencing. My mom blamed her declining health on taking care of Dad , especially the last 3-5 years. However, he was a saint to her when she had breast cancer. Which she didn't remember. I did not realize that it was the dementia she now had, that kept her from remembering! Oh boy! She was really mean her last 2 years, but lived to over 90. So, without a crystal ball, all we have is hindsight, I guess. I am very happy visiting with you and am always here for you! Shelley
    2010guardian replied to gottagohome's response:

    I understand what the doctor said about the Alz. meds. There comes a time when they don't help and we'll just to have to 'let go'. That sounds so hard for me to do. Accepting what comes!
    You have had so much going with taking care of your Mom too. I do believe that such concentrated caregiving can pull you down mentally and physically. I can tell that I have some depression because I'm not wearing my jewelry when i go out. I usually wear earrings every day, but now I don't care. I pray that Ken doesn't get mean. I don't think I'll handle that very well, but I won't cross that bridge until I come to it. We had our 3 mo. check up today. Ken has lost 9 1/2 lbs in the last 3 months without even trying. It's a good thing to him. Yesterday he wanted his jeans shorts and they were a size smaller than what he was wearing. He felt so good about himself. We've been working in the yard and that is good mentally for anyone.
    Well, tomorrow is my day out with the Red Hat ladies. It will be nice. Do something good for ourself.
    gottagohome replied to 2010guardian's response:
    Hope the past week has been good to both you and Ken. Ron had a few days last week with coughing spells, which had me concerned, but that passed without much incident. However, I am here to say EVERYONE was right. It was so very wrong to listen to the dr and the home, regarding removing him from the Namenda. When I arrived yesterday he was out of sorts, physically as well as mentally. It would have been 3 weeks Thurs, without the Namenda. But he was confused, irritable and I am afraid he will fall, as he stumbles even though he won't stop trying to walk around the halls. I immediately called the answering service, the dr on duty returned the call, and agreed to put him back on the Namenda. He spoke to the employee but since all management with the company are out of state, annual "party"?? including their nurse, I am told they will talk to me when they return, Thurs. They won't order more Namenda, because his is locked up in their office...I lost my father 3 weeks after he fell, with Alzheimers. It will take time for the meds to take effect and I remember someone saying, he may never regain what he has lost! I feel at fault and fear what may happen in the interim. Please learn from my mistake, do not listen to others! Between my arthritis, fybromyalgia, and this weather, I am not handling my error in judgement well! All I can do is pass on my experience to try and help others. Best of luck to all and thank you for this site, once again!

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