Husband with early Alzheimers -question

Posted by clayton48 @clayton48, May 25, 2016

My husband is 68 and was diagnosised with alzheimers two years ago, he has done very well and is currently on both donepezil and Namenda. He has complained recently of more anxiety and frustration. He is very alert in the morning but struggles as the day goes. If I ask his doctor to increase his medications would that help with his anxiety and frustration? He says he feels “on the edge” a lot. He is a very low key, quiet man. Any suggestions?

@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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My husband is 68 and was diagnosed over two years ago. He started with Aricept and then we added the Namenda. He is very quiet and reserved, and I did notice a little frustration at first, so we increased his Aricept. We stuck with with it and I see a difference. My position is, unless he is having terrible side effects I’m willing to take those chances. My husband still has good coginition. He has processing and short term memory issues. We know he has been struggling with this for at least four years, but it took a diagnosis at Mayo’s to convince us that is what he was struggling with. The doctor we saw at Mayo’s encouraged us on both medications and said it might buy him a few more cummulative years of cognition.

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@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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Great info Clayton. Thanks for popping back on.
@jhammer – are you reluctant to start the medication?

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@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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My wife was on the patch for a year and a half then statred having nausea and vomitin. we stopped the patch and symtoms disappeared. recently we went to a different Nuerologist and follwing the exam had a discussion about Namenda and the Patch. His comment were they give very littel benefits and not worth the side effects if there are any. . We were on the highest dosage of the patch.

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@colleenyoung

@clayton48 we brought your questions to a pharmacist here at Mayo Clinic. She writes:

“Treating Alzheimer’s Disease can be difficult as some of the side effects of medications may be difficult to distinguish from signs and symptoms of the disease. Both donepezil and Namenda may cause anxiety, nervousness, aggression, confusion and fatigue. Depending on what his current dose is, and if the provider thinks these symptoms are from the disease rather than the medication, there may or may not be room to increase it. There may also be other medications to treat the new symptoms he is noticing. It is a good idea to keep an open line of communication with his provider regarding these changes and never hurts to talk about adjusting medication doses. Often times we see dose adjustments and medication changes in patients with Alzheimer’s disease as their symptoms change. You are asking great questions, and I’m glad to hear he is still doing well. It can also be exhausting to be the caregiver, so remember to take care of yourself, too! Best wishes.”

@shellsk24 this is definitely in line with the experience you had with your father too, isn’t it?

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Yes we found Namenda had little or no relief. His moods began to change and he became more aggressive, but in actuality we aren’t sure if it was the meds or if it was the disease and symptoms transitioning. Unfortunately to me so much of the meds for Alz patients is trial and error because the disease is so complicated.

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who is the best doctor at mayo mn for early onset of memory loss possible alzheimer?????

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@fflowhplar

who is the best doctor at mayo mn for early onset of memory loss possible alzheimer?????

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Dr.Knopman by far. I took my husband to see him a year ago after seeing several local neuro’s; he was honest and compassionate. He also gave me his e-mail so if I have any questions I can contact him directly. My husband is 69 and was diagnosied three years ago.

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@colleenyoung

Welcome to Connect @clayton48. What a great question!
I found this article about agitation and anxiety from Alzheimer’s Association. It simply outlines possible causes, tips to prevent agitation and how to respond
https://www.alz.org/care/alzheimers-dementia-agitation-anxiety.asp

I’m also tagging fellow Connect members to join this discussion thread and share their experiences with Alzheimer’s and anxeity. @salena54 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter1217 do you have any thoughts or tips for Clayton?

Clayton – do you or your husband notice any triggers (time of day, lighting, medications, food, sleep, etc.) that might lead to the “on edge” feeling?

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Clayton is taking Namzeric, it is a combination of Donzapel and Namenda; he has done well on it. He continues to struggle with processing and short term memory. If you didn’t know him you would not suspect that he had alzheimers you might think he were just a little confused. I try to keep him active, I work fulltime, he is home and continues to care for himself. We have a friend that checks in and takes him golfing and sometimes for lunch. I have been told not to let him drive, that has been the difficult one. It takes away his freedom which in turn diminishes his self esteem. I do let him drive short distances, I purchased a car that has sound alerts when in reverse so I that gives me some peace. I also have his IPhone connected to mine so I can keep track of where he is. I’m not concerned he will get lost, I do worry about his reaction time. However, you will find that you have to find a plan that fits your life and your spouses. You will become his caregiver long before he is unable to care for himself. Blessings and may the Lord help you in the journey. Carolyn Apt

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clayton48, I was watching for you to post again. I first read your post last year and haven’t mastered how to follow one group only. My husband, turning 65 in July, was diagnosed with Alzheimer’s 3 years ago this month. He started on Donepezil and we saw a huge improvement in his ability to concentrate and cognitive functions (but he also retired from being a professor at a large university at the same time which also helped). About a year ago we added Namenda after my observations of a slowing down. We live in western Massachusetts and he participated in a clinical trial at Yale for almost a year before this. The drug was very helpful to him, but was pulled by the FDA due to some health complications mainly in older Japanese participants. This was very frustrating to us both. I think the Namenda has helped–his MMSE scores are stable at around 23-24, and the doctor here thinks there is no reason to stop as long as there are no side effects.
We are in the middle of a move from New England to Iowa where our daughter and her family live. This is something we have realized would come and we want to make this move now, while it is a “choice” and not a “sentence”. He is unable to be terribly helpful with planning and I am a bit crazed with details, and the time this is taking from time I normally spend with him. (Just venting a bit here.)
I have a question for those in this situation: my husband. like yours, appears “normal” to most folks who don’t take the time to try to have a conversation with him (word finding is getting increasingly difficult). He willingly stopped driving almost two years ago–it was all about reaction time. (We were at a doctor’s and he was asked if he ever had trouble putting something away in the kitchen. When the answer was “yes, it sometimes takes a couple of minutes to remember where the forks go, I went home and had the difficult discussion about reaction time and children crossing streets, etc. He hasn’t driven since.) His technology skills are drastically reduced–can’t scroll through a computer article, can’t figure out the remote control devices, etc. We are moving to a small town (as opposed to New England out-in-the-woods country) and will be able to walk to library, local coffee shop, our daughter’s house. His current flip phone is old and small. Does anyone have a recommendation for a very easy to use cellphone or other device that I could get for him? I don’t really want to saddle him with a panic button type of device yet, and may not even get to the point of him heading out alone, but I do need to upgrade his phone so he could call me if needed.
I am also open to general conversation about this “advanced early stage” not yet “middle stage”. What should I be doing now that I might regret not having done when I look back five years from now. Most posts are about how terrible it is going to get. It isn’t terrible now, but it sure isn’t life as we used to know it.

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Your husband sounds a lot like mine. He is beginning to see driving can be an issue. The remote, putting things away, that is all where he is at. We live in a country setting and I am moving into to town so that he has more exposure to parks and places that he and walk. We rescured a little dog two years ago and that has been the best thing we did. He is very attached and cares for him like a child, it gives him a sense of purpose. We have IPhone’s and have for some time. I would not change his phone, he can’t really doesn’t understand it but he can call and text. I like it because of the “find my phone” app it allows me to track wherever he is, even when he is in the neighborhood. I don’t have any advice on what to do……I’m still trying to figure that one out myself and I doubt I ever will. I pray…a lot…..and follow my instincts. I ask for help from friends and prayer and try to communicate with him as best I can….even when it is frustrating. There are times I do get angry with him, and then feel terrible because I know he can’t help it. However, you cannot forget you are spouses and there are times when you both have to be reminded of that. I don’t yell, or stomp or get mad, but I do let him know at times that he can make better choices to take care of himself or do things to lessen the symptions. God Bless

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@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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Hello, I am new to this group. It sounds like your situation is similar to mine. My husband is 71 and was diagnosed with Alzheimers last October. I knew something was wrong for about 3 years. He also is a very quiet and reserved individual but has even become more quiet and withdrawn since the diagnoses. My husband has been on Namenda since Jan., 2016. He started taking Lexipro a few months ago to help with anxiety. It has made a very positive difference. He has processing problems, minor short term memory problems and often has problems pronouncing words or choosing the right word to use. To make this worse on him, he was a high school English teacher and always had perfect grammar and diction. My husband will be evaluated in August to see if he is ready to participate in an Alzhiemer’s Study.

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@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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Hello @suzie2017 Nice to e-meet you here. I am so sorry to hear about your husband’s dementia, but am pleased you reached out here on Connect. Any disease can be isolating, especially Alzheimer’s and related ones. Here you will find many supportive folks willing to share their experiences and ideas.

I am Scott and I was my wife’s caregiver for 14+ years while she fought brain cancer and had many dementia-like symptoms. I was also one of the carers for my mother-in-law who had frontotemporal dementia.

I wish both you and your husband only the best and am glad you are here.

Peace & strength

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My husband has early onset ALZ. He was diagnosed at age 52. He takes both Aricept and Namenda. A psychiatrist may be able to prescribe medication to help with anxiety. My husband was already taking severe depression medication before he was diagnosed. His psychiatrist put him on Seroquel for hallucinations, Lorazepam for anxiety, and Wellbutrin and Paxil for depression. It has been great for him specially as his condition has been deteriorating rapidly over the last year and a half.

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@shellsk24

Hi – I cared for my dad with Alzheimers. I will say that I noticed when he started taking Namenda it made him very anxious and frustrated, so they lowered his dosage. He was the same as your husband very low key and quiet, so the change was very noticeable. You are awesome to notate these things and be his advocate with the doctors. The medications will be a key factor in his care.

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Namenda doesn’t work for everyone. It becomes a matter of trying different ones until one is found that helps. Namenda stabilized my husband for about 2 years and had no adverse reactions. He had tried the patch but the reaction was terrible.

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Is your husband still on Namenda or does he now take something else. My husband has been on Namenda since Jan., 2015 and I believe it helps him. He also takes 10 MG of lexipro to help with anxiety. Is your husband participating in a study. My husband will be seeing the neurologist in August to see if he is ready for the Alzheimer’s study.

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I now see your other response. I am sorry to hear of your husband’s diagnoses at such a young age of 52. My husband is 71. I think there is a difference in the progression between early onset and regular alzheimers. My husband has had cognitive issues for the past 4 years but he is able to do everything for himself. He gets confused and or mixed up at times but other than that he does pretty well. He also loses his balance at times and I am not sure if that is due to medications or alzheimers.

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