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My spouse is a 87 year old man that had a stroke nine years ago. Recently his mobility has gotten much worse. He cannot dress himself, bathe himself and can barely walk using his walker. A year ago he didn't use a walker. Over the past several months he has started waking up in the middle of the night to ask questions. Some of the more memorable ones go like this, "Mary, Mary....I don't think I am breathing." Me..."are you alive? " "yes." Are you gasping for air?" "No." "then I think you are breathing." "Okay." ...Sometimes he insists I get up and check that the clocks are correct as he is sure its much later than 3 AM. No, its 3 AM. I am exhausted all the time now, which puts me in a pretty bad mood. He goes to bed at 8 and gets up at 4. He might wake up three or four times a night. I haven't talked to his doctor about this yet. I've just started seeing things that resemble dementia very recently, like creating a scene at the doctors office etc. Any ideas?

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Trailrider, I am moving your post closer to the front page. Hopefully a caregiver who has gone through this will be able to help you.
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I would likely discuss with his doctor. I made a list of all my observations of my LO's behavior and dropped them off for the doctor to see before the appt. That way, he has the heads up and is able to get the big picture. He can order any tests that might indicate what's going on, but, also I'd inquire about the sleep issues. My LO takes a tiny amount of med to help her sleep.
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Thank you that's a good idea. Of course he will deny everything in his appointment. When the doctor asks him how he is, he will always reply that he's fine. I'm so afraid of how bad this will get.
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Well when my mom would say, "Oh I'm fine" when the doctor asked her about things, I'd chime right in and say, "Mom, remember when you complained about this or that or whatever." I'd never let her get away with minimizing what was going on. That's show timing and a LOT of seniors are masters of that game. My mom had no short-term memory, so she probably couldn't remember. Your husband has some definitive cognitive issues, so he may not remember. A lot of seniors also don't want to complain or bother doctors. Made me nuts with my mom.

You need to make sure the doctor understands that the frequent night-time waking is creating problems for YOU, his caregiver. If your husband has a good doctor, he/she should be able to work around your husband's answers. Just make sure you get the facts to the doctor ahead of time. I wrote my comments out and gave them to the office manager when I checked in and asked her to make sure mom's doctor saw them before mom's appointment. Good luck and please keep us posted.
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You have to speak up and it's hard to do. Say, why don't you tell the doctor about this. And if he doesn't remember what he's doing, then you will have to say. I think it's one of the hardest parts of caregiving. Or you can give the doctor the information in advance.
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My dad had Lewy body dementia for 5 years. The beginning looked and sounded similar to your spouse, with strange questions and ideas that he would believe 100%. It would be a good idea to visit the doctor. Bring a list of events with frequencies with you to share.
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I agree about alerting the doctor beforehand, because your husband will not remember the incidence or will deny he did such things. Instead of arguing with him, let the doc know what took place and maybe the doc can put him on some med to control his delusions. (Seroquel works well with some people.) Try not to have an argument with him in the doc’s office. It will be embarassing and fruitless.
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My spouse has had eight strokes over the past 12 years and bad Bph waking him many times at night. I fully get your problem. I cannot address his symptoms except that sometimes when they awaken they are confused at first. I cannot take sleeping pills because he does need me to do things for him in the middle of the night, like pick him up to potty. For me, getting back to sleep is the issue. Sleep Hypnosis apps from the App Store and on YouTube have been my savior. They don't all work all of the time but they're a great help for me, working about 50% of the time.
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I remember those days and just when I thought I couldn't handle it anymore, my husband passed. For us, drugs just made things worse. I finally ended up (with doctor's permission) giving him supplements of ashwaganda, 5HTP and 1 mg melatonin. It's very important not to overdo the melatonin or it will have the opposite effect. I know how exhausted you are but honestly, I'd give anything for our 4 am talks now. I wish there was a way around this besides death. Maybe meds will work for you guys. You are in my prayers. It's a hard, hard road. Start researching, reading all the books you can, and keep coming back here. You need all the help you can get. God bless.
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Don’t forget to ask the dr to check him for a UTI which can cause dementia type symptoms.
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I sympathize with you when he creates a scene at the doctor's office. I'm seeing a little of that too, but fortunately a "whisper in his ear telling him he is causing a disturbance" settles him down.
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I’m agreeing with those saying you have to speak up to the doc. My husband has Lewy Body Dementia and similar behavior. But at the doc it’s “I’m fine”. I chime in and sometimes I write an email to the doc ahead of time. I’ll say to my hubby “I’m going to write doctor S so she is all prepared for your appt “.
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Can we assume you are close to hubby's age? - you need your sleep get help now before you get sick

Do you have a cell phone? - if so record a few incidents & show dr. at app't - I agree to document a few & let dr. read it all before app't - I have got mom to do things by saying that she previously agreed & 'remember?' - don't do to often but when you need to get him to app'ts etc. - if he is reluctant about dr. app't then put a large bandaid on somewhere like a leg or ankle when dressing him - then say 'we're going to have this checked out by the dr. like you asked' so that he thinks it was his idea so more co-operative
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1. I agree with everyone who has said to drop a note/email prior to the appointment spelling out your concerns. That gives the doctor a little time to think about your situation or at least come in for that ever so quick visit prepared to view your husband in that light, despite the "everything's fine" speech.
2. Medications do help. My mom had a lot of anxiety. Things stabilized about 3 months ago when she started Aricept (slows but does not stop the progression of Alzheimers), Trazodone (a nonaddictive anxiety drug often prescribed for sleep as well), and Lorazapam (anxiety). I am very anti-meds, but when I saw firsthand some of the things going on, I knew this was not the "normal" anxiety you or I might have, and that the person (my mom) deserves some peace and relief from the chaos going on in her mind. Best wishes!
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As someone else said, have him checked for a UTI. The infection can cause delirium, which mimics dementia -- and they do and say crazy things.... Best of luck.
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If your husband has had a recent or sudden change in his behavior, it may be due to a medical problem like a UTI or other infection. Doctors call this "delirium" and might be reversed if the infection is treated. Call the doctor and get him checked out!
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Trailrider--Is is possible your husband forgets that one is WELCOME to have complaints when visiting a doctor? Perhaps he is thinking that the doctor's question as to how he feels is simply a "social" question rather than a serious one.
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All I have to add is that if it's at all possible to hire help, either for at night or in the daytime so you can have someone watch him so you can sleep, do it.

Ask the doctor about vascular dementia. Not much can be done for that, but it's always good to know what's going on so you can plan ahead. You need to get your sleep or else if you collapse, he definitely will have to go to a facility.
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I recently had to take 96 yo DH off Benadryl as it was starting to cause hallucinations - so definitely speak with his physician.

It could be so many things - and maybe simple enough as taking Zoloft or something similar. They might even recommend Melatonin to help him stay asleep after getting to sleep.

But I'm not a doctor or nurse - I can only tell you what worked for me. 50 mg Zoloft (Sertraline) and no more Benadryl.
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I can truly relate, as my husband is 83 and has experienced sundowning for about a year now. He has some good nights, but when he does sleep well, he wets the bed though I place layers of pads, have a waterproof matress pad and sheet and wears disposable nighttime underwear. When he has a good night he is up and down and very confused and aggressive. I am so afraid to really fall asleep for fear that he will engage in one or more of many risky behaviors. I honestly do not have good advice to give you, because I am searching too. He used to be on Lorazepam for sleep and for stress, but in trying to simplify his meds, he is now on melatonin. He actually does better on the melatonin. But as he declines, he sleeps more during the day and most nights, less at night. It is like having a newborn and I try to catch catnaps while he naps. It doesn't totally make up for the lost sleep but it helps. Yesterday his daughter came to visit and I asked her if I could nap while she was here. It felt so good to actually relax for an hour! If you have any good friends or family who could offer this brief respite, Don't be afraid to ask. Just orient them to the possible behaviors.
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Put a night light in the room. When he wakes up, gently touch his arm to let him know you are near. Tell him Jesus loves him to soothe is spirit. This worked for me and my mother who just passed away January 5, 2018.
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Put a night light in the room. When he wakes up, gently touch his arm or chest to let him know you are near. Anwer any questions and tell him Jesus loves him very much to sooth his spirit. This worked for me and my mother who just passed away January 5, 2018.
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MY mom with dementia would wake up and say her back was itchy it was crazy. This would go on for an hour I would have to scratch her back. She would say crazy things too like her brother and sister-in-law were picking her up and get her clothes ready. She experienced sundowners and it was tough for awhile. I had to take her to a neurologist. She was giving a brand medication Neudexta and it worked for a while it actually, balanced her out. She was also, giving something for sleep. It is very hard i took care of her in my home for over 4 years and I know there are other worst situations. I was just blessed it didn't last as long. The last months of her life i had my mom home in hospice. My mom died just 3 weeks before her 94th birthday. Good Luck and hang in there. Stay strong and remember you are not alone.
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She1934 - you need to sleep!! Your current régime is really detrimental to your health. If your doctor cannot prescribe sleeping draughts for your husband to get him quiet for the whole night, then you need a fixed time every day for a deep siesta lasting at least 4 hours. Ask for home help to come in during this time every day, so that you can go to bed and really sleep while someone is watching him. Or appeal to some of your friends to do this, and bring their knitting or novels etc - no TV . It's easier to arrange this than to arrange for night care. You don't want to fall ill.
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I visited our doctor before bringing my husband in. He asked me lots of questions and than told me that when I bring my spouse in he did not want me to help answer any questions. By keeping quiet I realized how bad his memory was and the difficulty he was having answering questions. At a follow up visit alone he told me to prepare for assisted living for him. Only 4 months later he had to go into a care facility. He no longer knew me or any family member and became aggressive.
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