We are a TEAM!

 

Seth-quote-4

When I started this blog a year and a half ago, I had no idea what would happen. Would people read my words? Would anyone care about what was happening to our family and in turn so many other families just like ours? Would I be able to make a difference? How much of our personal life would I be open and honest about without exposing too much? Would this harm our kids? Would I lose friends? Would I be found out as someone who still can’t remember correctly where to put that apostrophe? Would I embarrass the kids or Jim? So many “what ifs” floated by and of course there really wasn’t a clairvoyant who could tell me what would happen.

It didn’t take long before I became aware that there was a huge number of people who were struggling with Alzheimer’s Disease and everything that goes along with caring for someone with AD. These souls needed to feel connected and somehow a little less alone. I am so very proud of the fact I have been able to fulfill this need for so many around the world. Yes, around the world. So, I sit in front of my computer, day after day, week after week. I pour over heartbreaking stories and feel less alone. I see the angst and suffering that so many of my comrades feel day after day. Desperation. Loneliness. Heartbreak. Determination. Grit. I love, Love, LOVE the correspondence that shows up in my inbox daily. I am so appreciative that anyone who feels the weight of the world on their shoulders would take the time to read my words and then take even more time to write to me….well, I am just honored.  I write from my heart; as I would speak to a friend. A confidante. Someone I want desperately to understand my side of things and simultaneously learn what it is like to be afflicted with this shitty disease that takes away each and every aspect of your humanity. I do this to educate and to support. I do this because it heals me.

I recently received another letter asking for my advice. This is a compliment to me but let us not be fooled: I am experienced in dealing with the early phases of Alzheimer’s Disease, but I am by no means an expert. I can barely pronounce many of the medical terminology associated with dementia. I seldom can repeat verbatim what I have just read or heard when it involves scientific jargon. I get the gist. I comprehend. I get overloaded when I read too much research and information online. Just because I live with someone who has this disease does not mean I am qualified to tell anyone else what to do. One thing I have learned over and over; Alzheimer’s affects each patient uniquely. Drugs work differently. Outlying effects happen. Strategies and opinions abound.

Hi Karen! I remember reading that Jim no longer takes aricept (not sure about namenda) and I was wondering what his Dr. may have said about that. Did you ever see any benefit of it for Jim in the beginning and how long was he on it? Dwight has been taking aricept for over 4 yrs and namenda for over three years and he seemed to stay about the same for maybe a year after starting the aricept……then the decline seemed to escalate. As you know it’s very expensive.  I wouldn’t be as concerned about the cost If it did any good at all, but when he started the aricept the Dr. said it would only slow down the progression for about a year……….if that’s the case, why are they still prescribing it to him? I asked a pharmacist about it recently and they couldn’t say one way or another……and that probably wasn’t the person to ask. After all they are making money off of it, right!?  Dwight’s next appt at Sanders Brown Research Center is in August and I’ll bring it up to them………but I’d love your input.  Dwight has never been one to take any medicine…….just toughed it out :) , so I hate the fact that I’m giving him all this stuff and he’s getting no benefits from it that I can see. What if they tell me he’ll go downhill faster if I quit……..could that be the case? I’m just afraid of doing the wrong thing.

I share this letter because I know, yes, I know so many others could have written it. MANY could have. MANY have. So many of us who are trying to figure out what to do are desperately searching for answers. I have very recently realized that even though I said a vow to honor Jim and to stay with him in sickness and in health, I now understand I am responsible for him. If he gets lost. Me. If he doesn’t eat. Me. If his shirt is on inside out. Me. If he loses his glasses again or doesn’t clean his toenails or take a shower. Me. Me. Me. Yes, we all agree and understand our vows on our wedding day, but we have on rose colored glasses and we never think that our loved one will no longer be able to understand finances or will become unable to discipline the kids or carry on a conversation with neighbors.

So, I understand the desperation in each and every message I receive. Thank you for thinking so highly of me, but I am afraid I can not help you. I can only share our own personal experience. What I do encourage everyone to do: ask your doctor. If your doctor does not give you satisfactory answers, find another doctor. Find a support group. Ask every member of that group about their doctors and about what medication/treatments they have tried. Look online…there are some wonderful Facebook groups to seek out answers. Ask, ask, ask. Then be quiet and listen. Listen to what they have to say and then determine how it will help you with your dilemmas.

Our first neurologist was not anyone that I would recommend. So I asked around and found a new one. I feel as if I am Jims’ advocate. It is my responsibility to make sure he is heard and paid attention to. When he lost a lot of weight after being on Aricept, I spoke with the doctor and took him off (after many other tests came up negative). When Namenda and Exelon showed no improvements, I spoke with his doctor and took him off. Either way, do your own research. If you read about any drug used to combat the symptoms of Alzheimer’s Disease, you should find that these pharmaceuticals do not promise or intend to cure. They will help stave off symptoms for about a year at best. The patient will eventually end up in the exact same place they would have been without the prescription. So, the question remains….how can you determine if the drug is helping? Would they be declining more or less without the drug? There is no way to tell because this disease does not affect everyone the same. Time frames and symptoms vary as do the lengths in between changes. Not every patient has side effects. I have sat in support groups and at symposiums and listened as caregivers tell about positive changes seen when drugs were started. And I have witnessed firsthand this not being the case.  There is no way to know. You must do the best you can and know that your decisions are coming from a good, honest place.

Unlike most illnesses, there isn’t a “normal” course of action. Caregivers have a lot of leeway and a lot of input. Unlike a family who faces a battle with cancer or a heart attack, you do not visit an expert, choose a course of action, start fighting the battle, return for treatments and tests on regular intervals and have the possibility of a win. When you receive the horrible news that Alzheimer’s Disease has made itself at home in your brain, you have no options. No surgeries. No treatments that will lead to a cure. You have a doctor’s appointment in 6 months.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

17 Responses to “We are a TEAM!”

  1. Opal Tipton says:

    I’m so thankful for your blogs. They’re such a strength to me in some crazy way! Maybe because my husband and yours seem to be in the same place in their progression of the disease. You’re able to put into words how we all feel who are going through this disease with our spouses. Or parents. It’s a long journey and you’re so right. Everybody is different. What works for one may not work for another. Sadly, nothing works for long. I just pray for a cure, even though I know it will be too late for our husbands. Because I wouldn’t wish this disease on my worst enemy. So stay strong Karen. And well all be praying for you and Jim, as we pray for ours, too. God bless you, Jim and your children.

  2. Kimberly Smith says:

    I look forward to reading your blogs. As I have mentioned to you before, they have helped me in so many ways. It’s helps me knowing I’m not the only one with the same feelings and thoughts as we deal with this terrible disease. My husband can no longer look at a clock and tell what time of day it is and if I leave the room for too long, he thinks it’s been hours. I went to the grocery store the other day and left him with my two oldest boys. When I got home he was very angry and accused me of having an affair. I was only gone for 45 minutes, but to him it was several hours. It cut me to the bone. That’s the ugly part of Alzheimer’s that I’ve been dealing with for several months. We are always together and would NEVER cheat on my husband. The past three weeks, bedtime has become a nightmare. He gets in and out of bed, over and over. Some nights are worse than others. As it turns out, after his latest decline, his neurologist increased his Aricept to 23mg and it caused aggression and sleep disturbances. So, we have backed down to 10mg and he’s a little better. Still, an overall decline, but not as restless. I do wonder sometimes if it’s worth giving him the meds at all, but I just feel like we have to do something to slow things down. But, we all know the Alzheimer’s always wins. I’m praying for your family and so many others that are living this nightmare. Hugs, k

  3. laura says:

    to Karen, my mom quit taking her meds about a year and a half ago (because my father was not seeing any benefit as she was slowly progressing worse). The only thing she takes is an anti depressant which has proved itself to be very beneficial. She also takes her thyroid medicine. We experimented with not taking them and they really affected her mood – because they made her simply feel better.
    She’s very physically active, so we keep her going during the day. She sleeps through the night now. I think its a combination of being active and felt loved. She sure can’t express these things, we just suppose.

  4. Marsha Carpenter says:

    Karen, not a day passes that I don’t think of you. My husband is on Namenda & oral Exelon. When he began Namenda 5 years ago I notice a slight change. In all my research I don’t believe either of these meds help after a period of time. His neuro said ‘we don’t know if Ablilify or Exelon help but if he has no side effects it may help. Because Medicare part D pays for these incredibly expensive meds & he is in the nursing home he continues to take them. The anti-depressants are most helpful. He no longer asks to die or is angry. It also helps with the “sundowners” and sleep. My prayers are with you and all who suffer with this disease which I think is largely ignored. I lost my parents to cancer, my daughter to MSA – but this is by far the worst of all because we lose that person day by day, minute by minute. Keep writing, it helps all of us and one day you will see how much it helped you and your children who will learn more from this than can be imagined.

  5. Ruth says:

    I lost my husband to Alzheimer disease a little over 2 years ago.The disease runs in his family on his mother and fathers side. It’s such a degrading disease. I had my hubby at home all but the last 6 months of his life.
    My faith helped carry me through the hard times.My hubby was pleasant and smiled all the time up to the last.
    Hang in there ,God will hold you up.If I had to do it over again I’d still keep him home as long as I could. I know this isn’t always possible. The circumstances are different for everyone. There is no right or wrong. If placing your loved one in a facility works better so be it. I’ll keep you in my prayers.

  6. Joyce says:

    Thank you for your post. My husband is in the very late stage of AD. It has been 10 years now and I can relate to every thing you say. The losses we experience and the responsibility we acquire are overwhelming. My only advise is to take one day at a time. You will make it through and you will be stronger, wiser and far more patient and understanding than you ever dreamed possible. I am Missing Jim (my husband is Jim) too

  7. Jeri says:

    Thank you once again for your most recent post Karen. I’ll just have to disagree with you on something. You said “I can’t help”………..but , you not only “CAN help….you DO help and it is so appreciated. Your plate is so full, yet time and again you take the time to respond to our concerns, our questions and our venting……so please don’t ever underestimate the importance of what you’re doing. You’re MAKING A DIFFERENCE!

  8. william nash says:

    thanks for sharing your story. i have mild cognitive impairment thats thought to be due to alzheimers disease and have been on aricept now for 3 years. since i started it so early in the disease process i may get a longer benefit. i understood the side effects especially the appetite once since i am a family physician. i have done well on the aricept. i am hoping my wife will read your blog but i know its hard for her to do since we are not where you and jim are yet. i also find it hard to read your blog sometimes because i can see whats coming down the line. thanks again for writing the blog.

  9. Lee Ann says:

    Something I find tremendously sad is while we know about the AIDS researcher that died on the Malaysian flight that was hit by that rocket. And people have been saying that a cure for AIDS could have been on that plane, I found out today while watching the news on that flight going down, that there was a woman from the Netherlands on that flight that was studying for her Master’s Degree in Chemistry that died on that plane also. and her study partner in chemistry said today on the news that her friend was interested in chemistry to help people. And she particularly wanted to study for a vaccine against Alzheimers. I suspect there are more losses like that we will never know about.

    If those two researchers had gone on to the symposiums in Australia, who knows what cures could have been developed.

    But I still firmly believe that something simple will be found that changes the future for hundreds of thousands. When we realize the advances in medicine that have been made in the last 20 years, something is coming. Keep the faith.

  10. Andrea Spencer says:

    Thank you Karen for your blog and your honesty. Like the others who have posted mentioned, I visit because it is a comfort to me to read about another family experiencing many of the same things that our family is experiencing with Early Onset. Since my husband is still aware of when I am home or not, I choose to not attend a support group at this time. Reading your posts and those of the others who comment is helpful to me. My husband is on Namenda and Exelon patches. I don’t know if they are helping slow the progression. There really is no way to know. Fortunately, he has no side effects from them at this time. He is also on an antidepressant. I would like to mention that when Mayo clinic first thought he was suffering from severe depression (first misdiagnosis) he was put on Wellbutrin and the very day he took his first dose he started having spasms/shakes that night while asleep. They continued while he was on the medication for a couple of weeks and then our regular physician switched him to another antidepressant. But the shaking never went away and has worsened to some tremors during the day too. It seems like something in the Wellbutrin triggered something in his brain. Since he had never had the issue before the day of his first dose, I know it was definitely something with that medication. Now his new physician wants him to try a Parkinsons drug that he would take 3x per day to see if it helps. No way! We are both tired of him being a guinea pig. The physicians seem to think there is nothing to lose by trying different medications, but I think unless something is proven to work, it shouldn’t be prescribed. I guess they are probably all grasping at straws to try to find something that helps with the progression. I am really tired of people who mean well telling me of the latest “cure” for Alzheimers and thinking I don’t care enough if I don’t want to try it on my husband or investigate it further. I would be interested to hear from you or your readers if they have had this issue with others who mean well, but just don’t understand.

    • Jeri says:

      I wanted to tell of my experience with medicines so far in this journey. It was thought, in the very beginning,
      that Dwight’s memory problems were caused by his deficiency in vitamin B-12…….so he took shots for 3wks then tablets…….of course no improvement in his memory, but he still takes the supplements along with vitamin D supplements. His blood work shows he needs those. A couple of years ago Dwight started picking at his face constantly…….his face was covered in sores and scabs, and then he started pulling out his eyebrow hairs……one was completely gone! When I told this to his Dr. he completely ignored it and started talking about something else. I took that to mean “he didn’t have a clue” why he was doing it or how to stop it. Once he started seeing the neurologist at the Research Center I brought the issue to his attention and he said its something that some dementia patients do and he gave me a prescription and told me “I’m giving him a mild dose……let me know if I need to increase it”. Well, it worked great for over a year, then I had him increase it. He still picks his skin……arms, neck and chin mainly….but it does help some. Another issue he has is the jerking. One day at the Drs office he had a bad one and I thought his head had put a hole in the wall! He laughed but it scared me and everyone else to death! He’s on a medicine for that now too, which has helped a lot! He (and I) have been really lucky with his medicines. He hasn’t had ANY side effects with any of them. It does seem that with this disease, even though meds work at first-after a year or so-not so much.

  11. Sandy says:

    Thank you Karen for this post (and everyone else who commented), this could not have come at a better time. My Mom has AD and has been on Aricept for a 1 1/2 years and Namenda 3-4 months, and quite honestly we have not seen any change. She has experienced many of the same side effects mentioned. I have been struggling with the idea of stopping the meds but after reading your post I am feeling that it would be ok to stop and to not feel guilty about it. I have learned so much from you and don’t feel so alone in this journey. Thank you.

  12. Add me to the list of people who enjoy your blogs! Am in the UK and the internet is really brilliant for helping people in the same situation come together, and support each other in this way…

  13. Tom Haycock says:

    I have read this thread a couple of times as it addresses several of the questions I have had about the medications and whether they really help. I reached the same conclusion several of you have – they may help some people for a limited time in the earlier stages. But it’s not clear how you tell as you’re going through it as you don’t know what the results would be with or without the meds. Consumer Reports has done several articles on the topic and concluded that the only one worth considering was generic Aricept due the lower cost and possible benefit. My experience has been with my wife who was diagnosed 7 yrs ago when she was 58. She was initially put on 10mg Aricept by her neurologist. We moved shortly after that from NJ to Florida so we could be close to our families, and started with a Geriatric Dr who specialized in memory disorders. Within a year we also added a neurologist why was highly recommended by people in the local support group. Both of them recommended she stay on Aricept and add Namenda which we did. She lost ~ 10lbs during the first yr on the drugs but has been level since. It seemed like she was more confused when on the Namenda, which happens to be one of the side effects. We stopped the Namenda and shortly thereafter she started participation in a drug study. After it was clear that the study was not going to be successful, she stopped it and started with the Namenda again based on the recommendation of the neurologist. He said that the latest research info showed that a combination of the 2 drugs was the most effective, but couldn’t put any compelling data in my hands. After about a yr on Namenda we stopped it for good as it seemed the confusion was worse as before. I thought it was very interesting how the drug company behind Aricept came out the new “more effective” dose of 27 mg just as the generic 10mg was coming available. Most likely they were just trying to protect their patent and high pricing with the dose change. Anyway, my wife was on Aricept for about 5 yrs and Namenda twice for about a year each time. She really didn’t have any side effects except possibly the early weight loss. I never could tell if there was any positive effect from either drug, but it did seem that the Namenda had a negative effect. We had good insurance coverage for most of the time she was on the drugs but they were still fairly expensive. I finally stopped the Aricept when we lost my company insurance coverage and the new policy had poor drug coverage. By that time there was little evidence that the drugs helped. I think the Doctors still prescribe them heavily as they are the only meds that can have benefit, insurance covers much of the cost, and they are trying to provide some hope to the patients and caregivers. I think Consumer Reports takes a more pragmatic cost vs benefit approach. Finally, Karen, I find your messages & the responses of your followers extremely helpful. They are factual, caring, useful, and uplifting. You target so many of the things we face every day, tell it just the way it is and offer so much insight. Thanks and please keep it up as long as you can.

  14. Lee Ann says:

    I retired on disability two years ago from long term care. Before I stopped working, a psychiatrist had gone through our special care unit and had put everybody on exelon patches. Some people he left on aricept and namenda. but added the patches.

    Well, a lot of the people on exelon had problems with diarrhea. So he would decrease the exelon, a few he put on exelon pills, instead of the patch. I know the exelon is expensive too.

    Some people stayed at the level of cognition that they had been. A few got worse. But that would be normal in a unit like ours. Nobody can predict when someone will get worse or stay the same. We had a small care unit, with ten beds and three CNAs. So the anxiety was fairly low. So maybe it helped, and maybe it didn’t. I don’t know.

  15. Shanna says:

    You are an inspiration and a very strong & amazing woman. My Alzheimer’s experience began at the age of 4. My dad’s mother was stricken with it at that time in my life. The behaviors & actions I saw remained so vivid in my mind. I carried the dread & fear of this happening to one of my parents, but not excessively. My grandmother lived 12 years with Alzheimer’s. God bless her soul. Around the age of 22, both of my mother’s parents were stricken. (Her maternal grandparents had it as well) They lived 8 & 10 years respectively. My mother’s younger brother was the next one to get it & he succumbed in 2009. He liked one day turning 70. In 2008, I began to notice some signs that my mother was showing that were screaming “Alzheimer’s”!!!! The fear & dread I had since I was a child, resurfaced 10 fold & I got really nervous & worried. My mother was 71 at the time. She couldn’t take Aricept because of side effects. She took Namenda, but there was no significant change. And, the progression was not slowed down. In 2011, the progression seemed to have gained a whole lot of momentum. I could give so many examples of behaviors she exhibited from 2009 until today, but I don’t have time right now to type them & I KNOW your time is very limited so I will not push it. I totally agree with you that every person is affected differently. What works for one, won’t necessarily work for another. People have many different types of behaviors & there just are no “stereotype” to put with this horrible disease. My dad had been the sole caregiver of my mother until January of this year. He needed both knees replaced (about 10 years ago) & he was in quite a bit of pain. He had just about done all he could & had to have some help. Long story short, I moved back in with them to help him 7 days a week instead of 1 or 2. (He won’t ask anyone to help him, so I would just see what needed to be done & do it!! He couldn’t say no that way.) We were fortunate to be told about a home health company in our area, Heart to Heart Hospice. They have been the biggest blessing to us since January. It definitely took a huge load off of my dad. I would have been able to take care of her myself (with H2H Hospice also) but was a couple of months away from having 3 discs removed from my neck due to an auto accident injury. So, H2H started out coming just 3 days a week. They did the bathing, hair washing, etc & put her to bed. (she could still walk, but became more feeble from Feb to March & we were afraid of her falling, Discussed the concern with H2H CNA & we all agreed that she would benefit from a wheelchair for transport from the bedroom to the living room & vice versa. After my dad’s first knee replacement, she was getting more & more feeble & shaky. We felt it better for everyone involved that we go from the bed to the wheelchair without assisting her walking a short distance to the wheelchair each morning. Needless to say, she hasn’t walked since then, but it eases my dad’s mind & that is what matters the most. They celebrated their 60th anniversary August 6th. It was somewhat “bitter-sweet” but yet & still a milestone to be celebrated!! Just wanted to share a little with you & tell you what a phenomenal wife, mother & daughter you are!! You are an angel!!!!!!!!! God bless you & your family.

  16. Please let folks know about Sharp Again Naturally. My mother died of AD four years ago, and I’ve been dealing with symptoms myself. Fortunately, I followed the recommendations of the nonprofit I’ve been working with, and I’m doing much much better. There are at least seven causes of dementia that are REVERSIBLE, and if those causes are what’s creating the symptoms, then reversing them eliminates the dementia. People have gotten their brains back, and that includes me. I’m still working on it—it looks like lead and mercury poisoning are part of the problem, and I’m about to start on heavy metal detoxing as soon as I’ve done my homework. My phone number is 914-997-9611, and part of what we do at Sharp Again is to share resources for people who are determined to roll this condition back. Hundreds have turned it around, and if they can do it, the chances are decent that we can too. We’re about to film the presentation we deliver for public education. We’re not medical professionals, just researchers and reporters, so this isn’t medical advice, but please check it out for yourself. All the best for long happy memories!

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