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clayton48
@clayton48

Posts: 11
Joined: May 25, 2016

Husband with early Alzheimers -question

Posted by @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?

REPLY

@suzie2017

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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My husband loses balance as well. The doctor asked to get him a cane to help him attain better balance and it could be both medications and ALZ. My husband is participating in the DIAN Project (Dominant Inherited Alzheimer Network) at Washington University in St. Lois MO. He went through genetic testing and his early onset is inherited. His mother passed away at age 65 with complications of ALZ and his only brother also has ALZ but it’s in much better condition than my husband who is younger than him. I have always kept a tight relationship with his psychiatrist and neurologist as well as his Internal Medicine doctor who ensures he is not overmedicated. Many blessings to you in your journey. Lots of prayers as well.

We have a hard time knowing why my husband loses his balance. He takes 16 prescription drugs every day – Namenda, Lexipro and the others are for COPD, heart problems, prostate and high blood pressure. Sometimes I don’t think his various doctors even know. His COPD is worsening and right now he has an infection, pseudenomas aruginosa. He may loose his balance at times due to not getting enough oxygen to his brain. Does the DIAN Project bother your husband in any way such as various side effects? You indicated that he has Alzheimers in his family. My husband’s Mother, one brother and two sisters had Huntington’s Disease (HD). My husband tested negative for HD but he was diagnosed with Alzheimers last fall. I often wonder if there is a connection between HD and Alzheimers. Thank you for your responses. I really don’t have anyone to bounce questions or ideas off of.

My dad tried namenda but it changed his personality and “dulled” him. He engaged with others mich less than beforem His neurologist said that it is a psychoactive drug and can change personalities in some patients. He returned to his normal personality and just stayed on aricept.

@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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Thank you Scott. I am beginning to realize that this site will be very helpful. People are friendly and very supportive by sharing their own experiences which is very helpful.

Your message struck a cord with me. My husband is 74 and was diagnosed with MCI three years and a half years ago. It has progressed quickly to moderate Alzheimer’s and like your husband his days are much better than his evenings and some days are better than others days. Often he sleeps in his chair most of the evening. I did some internet research to see if I could find out if this was one of the symptoms of the disease but it didn’t show up. His neurologist said perhaps it was partially a side effect of the medication he was taking. It bothered me so much because his sleep is so deep that he seems lost to me–not the short nodding off he might do in better days. Another symptom that seems to be getting much worse is the ability to communicate. Word retrieval and the ability to narrate even a short story are a huge struggle. I happened across this site and read several of the posts where people mentioned many of these problems and it gave me a great sense of community and comfort–knowing others were experiencing the same things. My husband has worked with a speech therapist and, unfortunately, it was not a particularly successful experience. He’s aware of the fact that the words he’s using and what he’s trying to say are not clear and it’s so hard for him. It breaks my heart. He used to be a wonderful conversationalist and very quick-witted. It seems impossible that this could be lost. This is my first time writing on this site and I’m pretty sure I’m starting to ramble so I’ll sign off and just say thank you to all the people who have shared their own experiences. If anyone has found strategies that were helpful when communicating with those suffering from Alzheimer’s, I’d appreciate hearing about them. We often end up irritated with each other and then I feel guilty. I want, above all, to be kind and patient and get irritated with myself when I’m not.

@talie

Your message struck a cord with me. My husband is 74 and was diagnosed with MCI three years and a half years ago. It has progressed quickly to moderate Alzheimer’s and like your husband his days are much better than his evenings and some days are better than others days. Often he sleeps in his chair most of the evening. I did some internet research to see if I could find out if this was one of the symptoms of the disease but it didn’t show up. His neurologist said perhaps it was partially a side effect of the medication he was taking. It bothered me so much because his sleep is so deep that he seems lost to me–not the short nodding off he might do in better days. Another symptom that seems to be getting much worse is the ability to communicate. Word retrieval and the ability to narrate even a short story are a huge struggle. I happened across this site and read several of the posts where people mentioned many of these problems and it gave me a great sense of community and comfort–knowing others were experiencing the same things. My husband has worked with a speech therapist and, unfortunately, it was not a particularly successful experience. He’s aware of the fact that the words he’s using and what he’s trying to say are not clear and it’s so hard for him. It breaks my heart. He used to be a wonderful conversationalist and very quick-witted. It seems impossible that this could be lost. This is my first time writing on this site and I’m pretty sure I’m starting to ramble so I’ll sign off and just say thank you to all the people who have shared their own experiences. If anyone has found strategies that were helpful when communicating with those suffering from Alzheimer’s, I’d appreciate hearing about them. We often end up irritated with each other and then I feel guilty. I want, above all, to be kind and patient and get irritated with myself when I’m not.

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My husband clams up around other people. He says that he has a hard time following the conversation so it is easier for him to remain quiet. At home he opens up more but at times he slurs his words or uses an odd word or can’t think of the right word he is looking for. This is very hard for both of us because he was an English teacher and always used perfect grammar. I am wondering if being on Namenda since 01/2016 has dulled him and helped to reduce his energy. He has other health problems such as severe COPD with current infections, heart disease and is mildly diabetic. He takes 16 prescription drugs so it is hard for anyone to tell if his balance or loss of energy is coming from the drugs or alzheimers. He also hides his aches and pains from me such as chest pains when we are out for a short walk.

My husband also indicated he felt on the edge and at times he would slightly shake. We told his Neurologist and they put him on 5 MG of Lexipro for anxiety. A few months ago my husband asked if it could be increased to 10 MG. That is what he is taking now in addition to Namenda.

@talie

Your message struck a cord with me. My husband is 74 and was diagnosed with MCI three years and a half years ago. It has progressed quickly to moderate Alzheimer’s and like your husband his days are much better than his evenings and some days are better than others days. Often he sleeps in his chair most of the evening. I did some internet research to see if I could find out if this was one of the symptoms of the disease but it didn’t show up. His neurologist said perhaps it was partially a side effect of the medication he was taking. It bothered me so much because his sleep is so deep that he seems lost to me–not the short nodding off he might do in better days. Another symptom that seems to be getting much worse is the ability to communicate. Word retrieval and the ability to narrate even a short story are a huge struggle. I happened across this site and read several of the posts where people mentioned many of these problems and it gave me a great sense of community and comfort–knowing others were experiencing the same things. My husband has worked with a speech therapist and, unfortunately, it was not a particularly successful experience. He’s aware of the fact that the words he’s using and what he’s trying to say are not clear and it’s so hard for him. It breaks my heart. He used to be a wonderful conversationalist and very quick-witted. It seems impossible that this could be lost. This is my first time writing on this site and I’m pretty sure I’m starting to ramble so I’ll sign off and just say thank you to all the people who have shared their own experiences. If anyone has found strategies that were helpful when communicating with those suffering from Alzheimer’s, I’d appreciate hearing about them. We often end up irritated with each other and then I feel guilty. I want, above all, to be kind and patient and get irritated with myself when I’m not.

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Hello @suzie2017 Nice to e-meet you here. I am Scott and my MIL had dementia for over 20 years. Early on during her illness she too became increasingly uncomfortable communicating in the company of anyone outside the immediate family.

In her case her doctors said it was a defense mechanism as she declined. She became increasingly uncomfortable in any setting that was not her normal setting of routine and people so she would not communicate in those situations where and when others were around. It was a way for her to avoid making ‘mistakes’, which embarrassed her and importantly didn’t require the use of loads of her energy which was required from her to function in any non-normal situations.

Dementia is so unique in each person I only bring this up as an example.

Peace & Strength

@talie

Your message struck a cord with me. My husband is 74 and was diagnosed with MCI three years and a half years ago. It has progressed quickly to moderate Alzheimer’s and like your husband his days are much better than his evenings and some days are better than others days. Often he sleeps in his chair most of the evening. I did some internet research to see if I could find out if this was one of the symptoms of the disease but it didn’t show up. His neurologist said perhaps it was partially a side effect of the medication he was taking. It bothered me so much because his sleep is so deep that he seems lost to me–not the short nodding off he might do in better days. Another symptom that seems to be getting much worse is the ability to communicate. Word retrieval and the ability to narrate even a short story are a huge struggle. I happened across this site and read several of the posts where people mentioned many of these problems and it gave me a great sense of community and comfort–knowing others were experiencing the same things. My husband has worked with a speech therapist and, unfortunately, it was not a particularly successful experience. He’s aware of the fact that the words he’s using and what he’s trying to say are not clear and it’s so hard for him. It breaks my heart. He used to be a wonderful conversationalist and very quick-witted. It seems impossible that this could be lost. This is my first time writing on this site and I’m pretty sure I’m starting to ramble so I’ll sign off and just say thank you to all the people who have shared their own experiences. If anyone has found strategies that were helpful when communicating with those suffering from Alzheimer’s, I’d appreciate hearing about them. We often end up irritated with each other and then I feel guilty. I want, above all, to be kind and patient and get irritated with myself when I’m not.

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Thank you Indiana Scott. You explained my husband’s situation perfectly. It gives me some form of comfort to know that others are similar to my husband.

My dad is completely non verbal now and spends much of his day sleeping. He was diagnosed with PD and dementia at the same time six years ago at 75 (very few symptoms ). His rapid decline was helped along by a broken hip which required surgery and we all know the various issues broght on by the anesthesia. ..uggg. Along with being non verbal at this point we are also making a minced diet for him because swallowing is a challenge. I used to think that this was all PD related but in the meantime have learned that it’s prevalent in later stage Alzheimer/dementia as well.
Like some of your loved ones here, he was extremely vibrant and a big personality. His withdrawal from friends and conversations were signs of embarrassment for not being able to keep up. We went through a few years where he refused all company. The speech therapist didn’t help either and his light began to fade.
During these times I used two things to perk him up and take him somewhere happy.
Old photos. ..I mean very early…pics with my mom from their 20s, me as a baby etc. He loves that. (Unfortunately it makes my mom cry)
Old music from those days is my second weapon to make him smile. (I had to dig deep…music from Germany in the 50s is hard to find…lol)
I found newer pics upset him and reminded him about his decline…old ones seemed to just bring joy. I’m sure most of you have already experimented with some of this…so this long post is really to say “you’re not alone” . If you find something that brings them a smile…share it. We all need strategies.
It’s a tough road and you’re all rockstars!

@mojo1965

My dad is completely non verbal now and spends much of his day sleeping. He was diagnosed with PD and dementia at the same time six years ago at 75 (very few symptoms ). His rapid decline was helped along by a broken hip which required surgery and we all know the various issues broght on by the anesthesia. ..uggg. Along with being non verbal at this point we are also making a minced diet for him because swallowing is a challenge. I used to think that this was all PD related but in the meantime have learned that it’s prevalent in later stage Alzheimer/dementia as well.
Like some of your loved ones here, he was extremely vibrant and a big personality. His withdrawal from friends and conversations were signs of embarrassment for not being able to keep up. We went through a few years where he refused all company. The speech therapist didn’t help either and his light began to fade.
During these times I used two things to perk him up and take him somewhere happy.
Old photos. ..I mean very early…pics with my mom from their 20s, me as a baby etc. He loves that. (Unfortunately it makes my mom cry)
Old music from those days is my second weapon to make him smile. (I had to dig deep…music from Germany in the 50s is hard to find…lol)
I found newer pics upset him and reminded him about his decline…old ones seemed to just bring joy. I’m sure most of you have already experimented with some of this…so this long post is really to say “you’re not alone” . If you find something that brings them a smile…share it. We all need strategies.
It’s a tough road and you’re all rockstars!

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I’m glad your dad stills remembers things, people and music from the past. I have tried music but although he enjoys it he can’t recall any songs we used to sing and dance together. I pray the Lord he grants you and your family, specially your mom, with strength on the days to come.

@suzie2017

My husband also indicated he felt on the edge and at times he would slightly shake. We told his Neurologist and they put him on 5 MG of Lexipro for anxiety. A few months ago my husband asked if it could be increased to 10 MG. That is what he is taking now in addition to Namenda.

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Suzie2017 as you know my husband is only 60 years. His internal medicine doctor reviewed all of his medications and took him off several of them. He still takes his ALZ meds and I don’t think those meds cause the lack of words or understanding. It’s part of the disease. In my husband’s case he uses words from commercials or signs to fill in the blanks. He is past the not talking because he can’t communicate, he just says whatever comes to his head and most times none make too much sense. He is healthy though and so far eats well. The last time I took him to the neurologist he just told me to enjoy his health while it lasts. Agree with Scott and others this disease is so different in every person so it’s hard to pinpoint what is caused by ALZ or other conditions or medications. Prayers are my best ally..

Yes, music seems to help my husband, 87 years. He was a good roller skater until he was about 75 years old, so the old style music, and polka music are the best. He remembers many of them, although no longer whistles along with them as he used to. He, too, spends much of his days dozing off although not in a deep sleep. This is a very difficult disease and as difficult for family as the patient. We try to remain positive when visiting him, but it is so hard.

I just joined and would like to share experiences. My father, mother, mother’s two brothers, and her father all died with Alzheimer’s. My husband was diagnosed with mixed dementia; alzheimer’s, lewy bodies, and parkenson’s. Each of them showed different symptoms related to their dementias. My husband has been, and is, a real trooper in living with this disiease. Not that it has been easy,. He resisted testing before and during getting the diagnosis.
This was about 4 years ago, my husband is 84 now. He hasn’t driven for over a year. We just adjust our activities as necessary. So far I think he is mosty in the moderate stage, and can mostly care for himself. We can still travel and enjoy day trips with the local museum as long as I’m with him. I do get frustrated at times, and will probably vent here now and again, but overall I feel lucky to still have my husband.

@bonni3

I just joined and would like to share experiences. My father, mother, mother’s two brothers, and her father all died with Alzheimer’s. My husband was diagnosed with mixed dementia; alzheimer’s, lewy bodies, and parkenson’s. Each of them showed different symptoms related to their dementias. My husband has been, and is, a real trooper in living with this disiease. Not that it has been easy,. He resisted testing before and during getting the diagnosis.
This was about 4 years ago, my husband is 84 now. He hasn’t driven for over a year. We just adjust our activities as necessary. So far I think he is mosty in the moderate stage, and can mostly care for himself. We can still travel and enjoy day trips with the local museum as long as I’m with him. I do get frustrated at times, and will probably vent here now and again, but overall I feel lucky to still have my husband.

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Hi @bonni3 Nice to e-meet you here and welcome to Connect! I am Scott and came here initially to vent as well — so I say welcome to a kindred spirit!

I am sorry to hear of your husband’s, and your, journey. It is a challenging path and certainly not one anyone chooses.

I wish you strength, courage, and peace along this path!

Glad you are here and we all look forward to hearing more from you — vent as needed! We have big shoulders, thick skin, and good ears!

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