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Started bad about a month ago. What stage is this, he also puts his water in boxes of tissues. Thinks he is making wet wipes? Puts his pills in his water. Hides his pills in the trash. I am overwhelmed.
In my opinion, you are at the dyke-plugging stage...where you'll be likely to be for some time. His behavior becomes more bizarre? You adjust just as fast. And you begin picking your battles, if you aren't already.
Adapt...try to stay a step ahead...manipulate and cajole.
Of course, at least for the time being, you are taking over his meds...handing them to him with his wash-down of choice and standing there waiting for him to take them.
This site is great for bringing your challenges looking for solutions.
There's probably not a person on these boards that doesn't understand your pain.
I bet it is overwhelming caring for two people in your home. I can't imagine it.
I have discovered that the delusions decreased when my loved on when on Cymbalta. She still has some, but not as many. For the most part, they aren't harmful ones though. She thinks her primary doctor sleeps on the couch in their lobby. She thinks one of the staff members took her out to eat dinner on a large, black horse. And she sometimes tells me she is at another place when I call her, like a mall she used to frequent. Before she was on meds, she thought that local newscasters paid her a visit and that they had animals surrounding them on their news show. She liked it though. I don't recall any scary delusions. If they bring your husband happiness, I would just go along with it.
I'm not sure what stage it is that you have delusions. My cousin has severe dementia and she still has them. She's had them since Moderate stage.
The delusions and loss of cognitive function should be brought to the attention of a physician. Others (such as Babalou) are more familiar with the kinds of meds that are needed at this stage as well as the best type of physician to see (I believe it would be a neurologist) but don't have any expertise in this area.
But do get him to see an appropriate physician and get medication.
As to the delusions, even though they're upsetting, are they really causing any harm? One of the coping mechanisms is picking and choosing your actions. If it makes him feel good to think he's an actor, that might even help detract from the confusion about pills and Kleenex.
College, are you really caring for your husband AND you mom? Lots on your plate! Given how young your husband is, I would get him in for a complete physical and then a complete dementia workup. As it was explained to me, a real workup for dementia includes brain imaging (usually an mri) an evaluation by a neurologist ( who looks at balance, reasoning, memory and the functioning of the nervous system), and paper and pencil testing by a neuropsychologist. That person delves deeper into memory, executive functioning, memory, sequencing, reasoning, problem solving, reality testing.
So, as an example, my mom's long term memory is pretty good, and she knows us. Left on her own, she would put on her coat before underwear. She misinterpret what she sees ( if a man in a suit walks by, the nh is being sold; if she sees a spill on the floor, the pipes have all broken and place is going to heck in a handbasket).
If your husband hasn't been worked up, please try to do so. If you have a rehab hospital that is affiliated with a med school, they often have the staff to do this. Otherwise, find a hospital with a geriatrics department.
But you want to get him checked out by his pcp first to make sure this is not a uti or something easily treated.
I don't know what stage this is, but my dad did the same thing. We could get him all comfy watching Walker TX Ranger or Bonanza,, and then suddenly one day he got 70 years younger as WAS Walker or Hoss. Now a friend of mine is going through this with her hubs. We moved dad onto Andy Griffin or game shows, her hubs is on JAG...LOL.. Good luck, and change the channel!
Pam, what character does your friend's husband think he is on JAG? I ask because it's hands down my favorite series....ever. And there are quite a variety of good characters.
You all are wonderful, I feel better already. He was diagnosed June of 2013 with dementia. The neurologist did MRI and all the other tests. Joe takes the pills Aricept in the morning with Namenda 10 mg. At night he takes another Namenda 10mg. Joe has sundowners and hallucinations sometime. He gets a check up every 6 months. We give Melatonin at night and it worked for a while, last week I questioned his doctor about this and he said to double the dose. Last weekend he became very weak and confused. I took him to the ER and they confirmed everything is fine, he was just dehydrated a bit and very weak from not eating when he stayed up all night and slept all day. He did that twice last week, so by Saturday he was a mess. I was scared. Now I know what to do. It was very hard to get blood from him at the ER visit. They stuck him 3 times before it worked to draw blood. I guess that was because he was dehydrated or maybe his veins are getting bad. I don't know, I forgot to ask about that. The CT Scan showed atrophy. Very noticeable from the other CT scan done in Jan. 2010 when he had his last brain injury. This is all so sad. Yes I do take care of my Mother 94 and my husband 73. I get 2 days of six hours respite per month. When things get worse I will go after more help. Maybe sooner. I always pray this stuff will go away or no get bad for a long time. I go along with his stories and listen. I just hate it when he gets so dramatic at Family functions, but they all understand and love him very much! He still goes to bathroom by himself. He only has problems with underwear getting in his way when he tries to hurry. Then is the only time he has an accident, thank GOD for that. Thank you all for helping me!
Garden.. I have no idea.. but he is not trying to fight anyone! College...you will be glad to know Dad was able to go potty by himself up until he was bedridden, even when he could no longer eat. We just had to help him find his way to and from the bathroom. He did fight us sometimes, but he was able to orient himself and clean himself up pretty well. Sounds like your family is good with him, my was always great with dad. That helps sooo much
Pamz, that is so wonderful. If he can do that until he is bedridden, I will be very happy. My Mother can still wipe her bottom too. Other wise I would have it a lot rougher. I have to help Joe find the bathroom already, but I can do that. My Mother will try to take one step now since I got the lift, she hate it. Yay! My back is very tired but I can deal with stuff so far. I pray a lot! Then I don't lose my temper. The spoiled brat in me keeps trying to surface! I am an only child and never once thought I would be doing this! If they try it goes a long way in my book. They always thank me for what I do. That makes me feel better! If you all can do this I can too! I love them both so much! Joe likes to play with our Grand children, twin boys four years. But at times he gets hateful and wants all of the toys???????? They just laugh at him so far!
College, I am also an only child. I also never pictured this.. my parents were world travellers, always on the go and healthy. Dad passed in Feb, and now hubs and I just have mom.. who is still fairly sharp, but starting to show some worrisome behaviors. God help us both!
College, as was mentioned, nearly everyone here can understand your frustration and pain. In my opinion, stages are "guesses" at best anyway, because not everyone follows the same path with their dementia. There has to be some order, so stages have been assigned to behaviors, but people are so different.
For practical purposes, it's more about coping with the changes as they move forward. TV is out. I learned that early with my dad. News is horrible and he was back in the war every time the news came on. DVDs with music are great. Nature shows. Anything but TV. DVDs of favorite old TV shows are available, now,too and many can be streamed.
The pure logic of making wetwipes by putting water in tissues made me smile (in retrospect we can smile - at the time it's pretty tough). But there was logic to this in your husband's world. As has been said by the wise people on this site, you'll be having to change fast to keep up. I hope that you can find some way to receive respite. No one can live with this day in and day out without some reprieve and stay healthy.
Keep reading the responses on this thread and let us know how you are doing. Everyone has compassion to offer and you'll pick up a few tips along the way. Take care, Carol
The "being in the t.v. programs" sounds more like being in a manic phase of bipolar disorder and can be an additional disorder besides the dementia. Get a qualified psychiatric evaluation. He's saving you from buying the more expensive disposable wet wipes, but NEVER put box tissues in the toilet! You don't say how old he is, nor yourself, but dementia is a cruel disease that takes its toll on both the affected and caregiver. You will have to find the strength to keep everything together. Hang in there!
College, TV can be a tough one. It's often a good "babysitter" to keep them occupied while you try to accomplish something else...but it can be a curse when they get to the point that you describe. My mother is there now & simply changing the channel isn't a guarantee, nor is finding innocent old programs like Andy Griffith or I Love Lucy. Mom was all twisted up in knots the other morning watching Leave It to Beaver. Can't get much more innocent than that! But she thought what was happening to Beaver was happening to her. He'd gotten into trouble for turning in a poorly written paper & had to do it over again. She was BENT because she had to redo her homework & didn't know where to start. Changed the channel to the 80's sitcom, Too Close For Comfort. Again, she thought what Muriel was doing was what she was doing & she got torqued again because she was afraid people wouldn't like her new hairdo & face lift! I knew changing channels again was not likely to do anything but change the scenario she was upset about so I asked her to walk out for the mail with me...for the 4th time that day! Sometimes their incredibly short & swiss-cheesed memory can actually be a blessing! I know there are some on this board that are completely against using meds to control behaviors but, in my case, using behavior modifying meds have permitted me to keep mom at home longer so I would definitely ask his doc at his next check-up to give some a try. You may have to try different ones or different combinations before you hit on the right mix so don't despair if they don't seem to help right away. It is worth the time & doc visits to get the right ones!
College, I take care of my mother. She has been on aricept for 11 years. Her primary recommended I add Namenda and she started seeing people looking in the windows at night. I took her off it and the hallucinations stopped. Those meds can do a job and sadly the patient can't tell us. Dehydration is a big problem with the elderly. It definitely makes drawing blood more difficult. I just had blood drawn last week and the nurse asked if I had any water that day. She said it plumps up the veins. Try to keep a bottle water next to him during the day. God Bless you! Not easy. I'll pray for you!
Kudos to all of you! You haven't shot yourself out of anger or frustrating situations. I was my Mom's caregiver for the 20 years she lived with us. As long as they can manage their ADLs it's easier - sort of. But the advice to pick your battles is important. As long as the statement or behavior isn't dangerous or harmful, take a deep breath and ask yourself if it's worth fighting over. I found the safest channel for TV was DogTV. All sorts of animals, lots of puppies and all to gentle backround music. It worked for hours. During the last two years of Moms life, she passed away last February, I became an Assisted Living Administrator. Now I teach classes to help people better understand and also be more prepared for their future instead of waiting for calamari then trying to react.
Wow, Dianepod...I have NO clue how you could caregive for 20 years & then go on to be an Assisted Living Administrator. I've been Mom's sole caregiver for the past 5+ years & I'm also a licensed nurse. I'm SO burnt out that I honestly can't imagine returning to a nursing position once my caregiver role is over. Even the thought of it makes me want to cry. I just don't have the empathy any longer that nursing takes & very selfishly just want someone to take care of ME for once. You must be an extraordinarily strong woman to do what you did...and continue to do.
Thank you for all of the things I need to hear. Joe is 73 and I am 69. I will talk to neurologist and see what he will do for us. I guess I also need a psychiatrist for the bipolar?
Ozarkolly, Last night Joe did just like your Mom but it was because of a Family party. We played a game with three volunteers to take their card and they had 3 minutes to dress as the character from a pile of clothes(etc) on the floor and we all had to guess what they were. Well when we got home Joe kept looking into drawers trying to figure out how many outfits he could fix up. He is very slick to be sick with dementia. He laughs all the time at sad things and says things he shouldn't say. He was a preacher! (10yrs)
We have been experiencing same from time to time, but since Dad is next door we are able to limit his tv viewing to a few select channels and he seems fine with that. He did used to assume roles - mostly as policemen; catching the bad guys and either putting them in jail or by shooting them. The shooting thing was rather frightening, sometimes graphic and may have been indicative of his frustrations about loss of independence. He still goes to bathroom by himself also and has adapted to disposables. Not bad for a gentleman approaching 90!
Everything I've heard makes so much since to me now. Forgive me when I repeat my self or you all. I was so much in denial before, now I understand. I have a peace from all you have told me. I know now it is the disease and not him playing tricks. GOD bless the Caregivers! Hugs!
My husband started putting himself in TV shows and movies about two years after his diagnosis. I think he felt at a lost as to who he was and was trying to have purpose. That phase lasted about 9 months. It was very traumatic at the time, but now I think back and smile. The worst situation was after watching the movie Uncle Buck. He wanted to look for the children we were babysitting and was very upset when we could not find them. For a long time, we only watched shows with commentators, such as on the History channel.
Take care of the hateful part first, a simple change or added Med will help that. My husband, if I blink will pour the liquid on his pills, so I now pay very close attention. He doesn't pour water in tissue boxes but empties every box, plus toilet paper, paper towels daily, folds them ever so neatly and stuffs his pockets so full it's hard to remove then he will ask for a nose wiper, forget that he already has pockets full. At night once he's asleep I take two plastic grocery bags fill one with unused paper the other with used, discard the used bag and fill a container up for the next day for him. I tried not buying tissues, then I'm looking for TP when I need it, it's strange but it's what they do. I do not have the tv problem, he's not interested. He's late stage 6. You seem like you can adjust easily & that is what it takes, every day. 💜💜💜💜💜
OzarkOlly: I'm far from a super anything. I do have an angel of a husband. A close friend finally got through to me the importance me keeping my sanity and dealing with the anger I felt. Respit care became a life saver, both at home and for several days at an assisted living community. It was hard dealing with the guilt I felt. But I had so many people asking how did I know what to do. That inspired me to design an 8 week class (once a week for two hours) with the last 3 being tours of 3 different styles of communities. I retead my earlier text and saw my spell checker converted calamity to calamari. Funny. 😊
My Mom also gets TV and reality mixed up, dreams too. My Church puts video up every week for shutins. I put a small table in front of Mom with my 17in laptop on it. For the next hour she sings the hymns and recites the usual things. She got so into it last week, when over I told her she needed to get her shower she sais "in Church?". We have a number of cable stations that have the " old" shows. Those she watches. No news and no emergency shows. If there is a fire or bombing she thinks its going to happen in my house. Not sure what stage you would call it but I have seen downhill changes in Mom the last month or so and she is now in Daycare. Right now she is sitting next to be figetting. Bugs me. :).
JoAnn29, my Joe is always figetting, he is never still, makes me nervous too. It must be something to due with dementia, Joe was hyper before but now it is wacky hyper, poor man. I have to take control on all of this TV stuff. I have to make my kids understand this too when they come over. I have loads of DVDs from our church and I will play them for him too. Thank you for the information. I need all the help I can get. This is a battle and I'm going to win. I have to just stay ahead of him and figure out what to do next. This is the hardest thing I have ever tried to do.
Mom has been with me a year. Most of the time she thinks she is in another place and we have come to get her. Today she wanted to know how I knew where she was because she was at the movies.
College, I couldn't help myself, I grinned from ear to ear when I read about this sudden acting career and giggled like crazy upon reading a later comment where you mentioned how dramatic he gets at family get togethers. Oh dear, dear, dear. I don't have any advice to offer you, it sounds like you have the right attitude, its just tinged with a bit of natural frustration. Great advice from everyone who commented. I just want to thank you for lifting my spirits. God bless you and those you are caring for. Hang in there.
One thing that came to mind just now when I read, "this is the hardest thing I've ever had to do" oh boy you are so right. My dad is so childlike sometimes because of his dementia. With actual children we can accept that they are childish because they are children but in a grown spouse or parent it's just bizarre at times. I love the story Amy Grant shared when she was dealing with her dad's dementia. She had been venting her frustrations to a friend when her friend finally said to her, "these are the last lessons that our parents will ever teach us." Bittersweet.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
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In my opinion, you are at the dyke-plugging stage...where you'll be likely to be for some time. His behavior becomes more bizarre? You adjust just as fast. And you begin picking your battles, if you aren't already.
Adapt...try to stay a step ahead...manipulate and cajole.
Of course, at least for the time being, you are taking over his meds...handing them to him with his wash-down of choice and standing there waiting for him to take them.
This site is great for bringing your challenges looking for solutions.
There's probably not a person on these boards that doesn't understand your pain.
I have discovered that the delusions decreased when my loved on when on Cymbalta. She still has some, but not as many. For the most part, they aren't harmful ones though. She thinks her primary doctor sleeps on the couch in their lobby. She thinks one of the staff members took her out to eat dinner on a large, black horse. And she sometimes tells me she is at another place when I call her, like a mall she used to frequent. Before she was on meds, she thought that local newscasters paid her a visit and that they had animals surrounding them on their news show. She liked it though. I don't recall any scary delusions. If they bring your husband happiness, I would just go along with it.
I'm not sure what stage it is that you have delusions. My cousin has severe dementia and she still has them. She's had them since Moderate stage.
But do get him to see an appropriate physician and get medication.
As to the delusions, even though they're upsetting, are they really causing any harm? One of the coping mechanisms is picking and choosing your actions. If it makes him feel good to think he's an actor, that might even help detract from the confusion about pills and Kleenex.
Given how young your husband is, I would get him in for a complete physical and then a complete dementia workup. As it was explained to me, a real workup for dementia includes brain imaging (usually an mri) an evaluation by a neurologist ( who looks at balance, reasoning, memory and the functioning of the nervous system), and paper and pencil testing by a neuropsychologist. That person delves deeper into memory, executive functioning, memory, sequencing, reasoning, problem solving, reality testing.
So, as an example, my mom's long term memory is pretty good, and she knows us. Left on her own, she would put on her coat before underwear. She misinterpret what she sees ( if a man in a suit walks by, the nh is being sold; if she sees a spill on the floor, the pipes have all broken and place is going to heck in a handbasket).
If your husband hasn't been worked up, please try to do so. If you have a rehab hospital that is affiliated with a med school, they often have the staff to do this. Otherwise, find a hospital with a geriatrics department.
But you want to get him checked out by his pcp first to make sure this is not a uti or something easily treated.
Pam, what character does your friend's husband think he is on JAG? I ask because it's hands down my favorite series....ever. And there are quite a variety of good characters.
College...you will be glad to know Dad was able to go potty by himself up until he was bedridden, even when he could no longer eat. We just had to help him find his way to and from the bathroom. He did fight us sometimes, but he was able to orient himself and clean himself up pretty well. Sounds like your family is good with him, my was always great with dad. That helps sooo much
For practical purposes, it's more about coping with the changes as they move forward. TV is out. I learned that early with my dad. News is horrible and he was back in the war every time the news came on. DVDs with music are great. Nature shows. Anything but TV. DVDs of favorite old TV shows are available, now,too and many can be streamed.
The pure logic of making wetwipes by putting water in tissues made me smile (in retrospect we can smile - at the time it's pretty tough). But there was logic to this in your husband's world. As has been said by the wise people on this site, you'll be having to change fast to keep up. I hope that you can find some way to receive respite. No one can live with this day in and day out without some reprieve and stay healthy.
Keep reading the responses on this thread and let us know how you are doing. Everyone has compassion to offer and you'll pick up a few tips along the way.
Take care,
Carol
I was my Mom's caregiver for the 20 years she lived with us.
As long as they can manage their ADLs it's easier - sort of.
But the advice to pick your battles is important. As long as the statement or behavior isn't dangerous or harmful, take a deep breath and ask yourself if it's worth fighting over.
I found the safest channel for TV was DogTV. All sorts of animals, lots of puppies and all to gentle backround music. It worked for hours. During the last two years of Moms life, she passed away last February, I became an Assisted Living Administrator. Now I teach classes to help people better understand and also be more prepared for their future instead of waiting for calamari then trying to react.
But I had so many people asking how did I know what to do. That inspired me to design an 8 week class (once a week for two hours) with the last 3 being tours of 3 different styles of communities.
I retead my earlier text and saw my spell checker converted calamity to calamari. Funny. 😊