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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

Hi , my husband was diagnosed with terminal lymphoma 1.5 years ago. His anxiety and depression was treated with anti depressants, verging in dosage and family types until he found one that suited him at the time, he’s also on pain meds so I spoke with his pallative care doctor and GP . Sometimes it was mental and or physical fatigue that made it worse. He also has a counsler and use to have visits from our pastor when we lived in the city. We’ve lived in the country now for about a year, a very small town of 5,900. I would say it’s been a real combination of anti depressants and talk therapy. He also belongs to a Men’s Shed, the group contact and talk, even about regular mundane life things helps his mental health and he’s started to laugh again. Anxiety is a very rough road, I think support from a variety of ways helps. I hope this was useful to you. My husband and I both had to find our Joy again, illness, sudden changes , it can be so overwhelming. Finding some joy and some laughter can be hard. But a little goes a long way. I’ve not been good at having fun in general, so I really have to work at it myself. Now it seems to be a part of coping skills in life. Wishing you the best under these challenges , one day at a time. M.Nina

It sounds like he’s bothered with Sundowners. I don’t know what can be done for that, possibly nothing.

@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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Hi, I am new to this site I see the post are older but Alzheimer’s remains the same. I have been a personal caregiver for my mom in law since Dec 13th 2015. She has progressed to havin both Alzheimer’s medications. Her MMSE giving last November 2017 was 16/30
The lowest it has been, as of Jan30th 2018 her dr has put her on 2.5 mg of Zyprexa. While she has on been given her 1st dose at bedtime last night.i will be watching for signs if her not engaging at all. Which is something I don’t want. She has become combative which is way out of character for her. And I do not engage her at that time.
She turned 80 last July and I am very close to her as is she with me, I have been her daughter she never had for 31 yrs. and she only wants me and her son caring for her. And now that is about to change, she isn’t takin care of her hygiene and we will be bring in a caregiver to help her with that. She will turn the shower on and may or may not get in but never wash her hair. I hate to see her havin to go through this because she has always been very independent help 2 full jobs for 25 plus yrs.
she has silent strokes and she is almost totally blind. She has 10 % of her eye sight. So seein her dirty clothes is a challenge for her and she refuses to change. So it has become a issue that we have to address.
The 36hours (book) it all looks great on paper. But each person it different. Sometimes she is here. Most times not so much but sits and worries about losing her independent life she has always known.
Tryin now to stay a couple steps ahead of her ugly friend.
Thank you

@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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Hi @randee, you would find this site very helpful and people very supportive.  So do keep in touch.  I do not have any suggestion for you right now.  Only appreciation for your concern for keeping in mind your mother in law wishes and dignity.  I am at early stages with my mom and as tough as it can be to see the gradual changes in her cognitive capacities and her memory, I can't imagine to reach the point you are right now.  It sounds overwhelming from my stand point of view.  I hope I get to live later stages with the same compassion and courage you show.

@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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Hi, thank you. I took care of my own mama in her last 4 months of her life. Which I never dreamed of doing or wantin to do. But I did want too. When it was plain to see that my mama in law was in trouble livin alone, there was no question as to what we needed to do. We have been livin in her home 2 yrs now and the last couple of months have taken her judgement and reasoning which is very hard to watch because I know who she is without her ugly friend. And that’s who I try and make sure everyone else sees. I can honestly say this is the closest I have ever been to Alzheimer’s and I certainly know more than I care too. Learnin more daily and not likin what it is doing to her mentally and emotionally. But as long as I keep 2 steps ahead of the ugliness. We will get through to the end. I keep her Dr informed of her behaviors and any issues that has come up to the point beyond what I have tried. We took her on her first cruise this last Dec. And it was sad to see just how far Alzheimer’s has gotten.
Overwhelming isn’t what I feel, I feel sad for her havin to go through all the ugly stages while she try’s to fight to stay here.
So with her newest medication I am prayin it just takes the sharpness off the edge she is feelin. Nothing more. We bought a 25 ft travel trailer to take her campin over the summer which is something she wanted to do in 2016, without being with her 2nd caregiver. Today she took a nap to rest her brain and I did up her laundry. She normally will put them away, they are sitting on the couch and she is sitting next to them. Last week she put a pair of pants we bought her away. So I have to wonder what is wrong today and I will continue to watch her. The clothes aren’t in the way and I’m sure if I do say something she’ll tell me she was working on it. I will give her independence as I can.

@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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check her body language and her facial expressions. That really helps a lot if ya can

@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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I have always respected my elders and now that she has this ugly friend with her. All the more reason as long as she isn’t hurting or hurt in anyway. Maybe that’s wrong.. but Miss Ugly has moved in and Ugly talks and yells. Those are things I just have never given any mind too. So I don’t engage when Ugly is present. I will stay two steps ahead of Ugly. And love my mom through it all.
That’s what I feel I have to do for her.
Oh in the early years I made up a game to play with mom. I would “lose” my coffee cup. I say mom have you seen my coffee cup. She would immediately start lookin for it. I always knew where it was. But it made her feel better about what she knew would move in her home. Her father had Alzheimer’s and he got combative but there wasn’t anything to help him. Mom has help. And I do remind her of that. Also because I know her so well, I am able to check her body language and her facial expressions. That really helps a lot if ya can be mindful of those 2 things.
God Bless

Liked by PeacefulOne

@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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Dear @randee thank you for your suggestions.  I liked your coffee cup game.  God bless you.

@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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I hesitate to recommend more medications, but it may be helpful to ask your doctor if an anti-anxiety/depression medication (hopefully one with fewer side effects) could make a difference. It was a good choice for my mother. (However, since her Alz. symptoms have worsened over the last year, so is her anxiety. At this stage in her illness, I’m not sure if increasing the anxiety meds are a good choice or not. Reading and implementing the tips recommended in the article about anxiety (linked above) have made a positive difference for us.

I hesitate to recommend more medications, but it may be helpful to ask your doctor if an anti-anxiety/depression medication (hopefully one with fewer side effects) could make a difference. It was a good choice for my mother (in addition to Namenda and Donepezil. (However, since her Alz. symptoms have worsened over the last year, so is her anxiety. At this stage in her illness, I’m not sure if increasing the anxiety meds are a good choice or not. Reading and implementing the tips recommended in the article about anxiety (linked above) have made a positive difference for us.

I cared for my father with Alzheimer’s who complained of being anxious. He would rock back and forth in his chair. He’d say “I feel like I need to be doing something…” It was so hard and frustrating to him. His doctor would prescribe lorazepam (sleep) but what worked the best for him was vaping high CBC with small amounts of THC (medical marijuana). This did it — it was the solution to our problem! I got my father a medical marijuana card in Oregon. And hands down — after a few puffs, he would stop rocking and was able to relax. I do not recommend edibles or anything with high THC – because these give that head high. You do not want that with risk of falling and over eating. It must be high CBD and must contain tiny amounts of THC to make it active. This also helped with pain and headaches. It was a miracle drug for his anxiety and restlessness. He also enjoyed nature shows which helped calm him like Blue Planet series. I also made him Sleepy-time, Kava-Kava tea. This was one of the hardest jobs of my life caring for my dad with this disease but I was grateful to be the one to care for him. We had the best of times and the worst of times. My heart goes out to you for what you are doing. It is not easy… <3

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