Amping up from the butt crack of dawn

Comrade

OMG OMG OMG

Is this going to go on forever? Sue now wakes at 4AM, which was my only time to myself. She begins asking and repeating the same questions "tirelessly" and crescendos upward, until she is in tears.

This continues the entire day.

She cannot take a nap, hence I'm "on the job", with absolutely no break. The tension on my part is brittle. Actually, it is brittle for both of us.

Redirection is futile and absolutely hate giving Sue an Ativan, unless she is totally inconsolable.

Because it is cold outside, walking is out of the question. Driving around the park doesn't work and going through her PT exercises is like asking a small child to "clean their plate".

This is probably a phase and understand her fears, but OMG.

arizonadianne

Oh, no. That sounds awful. I hope it is a phase and that it passes. Good for you for knowing how to prevent escalation and avoid her in-consolation.

Ed1937

Hi Comrade. Sorry you are dealing with this now. It sounds very hard for you (and her). Hopefully this is a phase that will magically go away, but the uncertainty itself is hard to handle. I hope your day gets better.

Jo C.

How dreadful for the both of you.  Such behavior with repetitive questions as you describe are often based on emotion; in such a situation one must deal with the emotions behind the words and not the specific words themselves. Couple that with a fading memory, a feeling of insecurity,  and it is a recipe for those ongoing questions by a very troubled Loved One that often do not seem to have a stopping point and eventually end up with increased emotional behavior being involved.

Another thing you may want to have checked, is that of a "silent" urinary tract infection.  With these UTIs, there will be no complaint of pain or burning, but there is most often a significant change in behavior to the negative side of the ledger.  Many of us here have had this happen with our Loved One and it can happen quite often in some. 
 

For a urine test, it is best to not rely upon home urine test with a dipstick; that method is fraught with false readings. Have the doctor place an order at a lab and be sure he automatically requests a culture and sensitivity to be done.   If you do this, when dropping off the urine sample, ask for two sterile urine collecting cups so you will have them on hand for possible future use.

Sometimes, after awhile or with a new med, the cause may the need to adjust meds.  Since she seems to do this in the early morning; is she on any nighttime meds that may suddenly be causing a problem?  Can you detect any sort of triggers that may cause the cascade of behaviors?

Sometimes, we ourselves may be contributing to the dynamics, especially if we are not responsive in a comforting positive manner or as yet able to address the root cause of such behavior.  Our Loved Ones (LOs) are very, very tuned into our feelings and can pick up on our frustration, anger, irritation, etc. very easily from our movements, facial expressions, tone of voice, body language, etc.; and this can cause behavioral issues.

If this continues and the aforementioned possibilites are ruled out, it may be time for her to see her dementia specialist for an assessment and adjustment in treatment.

This is not only frustrating for the caregiver, but is also a huge negative upon the quality of life for our LOs who are actually suffering.

It also may be time to ask yourself if you can continue to do the same thing the same way any longer.   Would it be possible to have a companion or aide who is a good fit to come in as a "new friend" for her . . . . or is there a nearby Adult Daycare Center that specializes in people with dementia that has activities, lunch service, etc., that would give her increased socialization and give you time to yourself?   Each Daycare is different in how they are set up, function and the hours open; one has to do a little searching to find the most approprate one.

What we all learn is that "time we have set aside for ourselves," never stays.  Change is the only certainty.  We can only adjust our own schedule, adjust our expectations and responses ourselves because our LOs have lost the ability to do so.  It can be exhausting and when we realize the permanence of such dynamics, it is a difficult matter to face and to integrate into ourselves as well as into our daily lives on a permanent basis.  The disease progresses and the needs evolve.  We here frequently say, "Always have a Plan B in mind_ should a sudden need arise or if things slide too far sideways for us to manage any longer.  Even if the need for an alternate Plan is not actually at hand, it is always a good idea to have one in mind for a "just in case" need that abruptly pops up that could not have been foreseen.

Links:  How to respond to repetitive questions:

https://www.alz.org/help-support/caregiving/stages-behaviors/repetition

https://www.alz.org/help-support/caregiving/stages-behaviors/repetition

Let us know how you are and how your dear wife are doing, we will be thinking of the two of you,

J.

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Paris20

Comrade, I know what you are going through. It was the same for me. I made myself physically ill dealing with my husband’s horrible symptoms. I spoke to the neurologist. First he prescribed an antidepressant (for both of us). It has been a godsend for me but not so much for my husband. His rages increased. I worried they’d become physical. Back to the neurologist. He prescribed the antipsychotic, Seroquel, for DH. I’ve written about this but it’s worth repeating. It has made my husband’s behavior much calmer and less fearful. We can live together with a somewhat normal life, at least for now. It wasn’t that way a year ago.

I learned, during the 7 years I’ve been dealing with this, that I had to give up my preconceived notions about medications. At first I resisted giving “those chemicals’ to my husband. That was wrong. When you’re dealing with this degenerative brain disease, you cannot use cajoling, teaching, begging, rational discussion, or even diversion at times, to yield the results you want…and need. Keeping our loved one safe and as healthy as possible is our goal. Whatever it takes to do that is what’s necessary.

Comrade

Bonjour Paris, Je suis d'accord avec le conseils...

This is the worst imaginable affliction and yes, I have worried about the chemicals. However, I am neither a chemist or a doctor.

I will dispense as ordered and hope/pray that they help her.

Gig Harbor

Give her the Ativan. Hopefully it will help calm her and she will be happier.

Buggsroo

Comrade, I laughed at your title on your post. I sympathize with your plight. 

My husband goes to bed around 4 or 5 pm. He wakes up around 9 pm, 11 pm and then is up around 3 or 4 am in the morning. He paces the house, jacks up the heat and pretty well eats everything in sight. I am very grateful he does not need to have me along for the ride. 

It is upsetting and if it takes chemistry to get things more settled, go for it. I have been taking an antidepressant for years, honestly if not, I would be in a rubber room by now. I am in the midst of getting a geriatric psychiatrist to evaluate my husband and hopefully he can adjust my husband’s meds.

Good luck, I can imagine how stressful this is for you.

Joydean

My husband was having panic attacks off and on all day and most of the night, his PCP put him on Ativan for a short time, he ended up in er, and finally we got to see the psychiatrist, he took my husband off Ativan. He told me Ativan can have just the opposite effect on some people. It was actually increasing his panic attacks.  He changed husband’s meds and I brought him home and life is better. Each person reacts differently. 

Best of luck to you and your wife. 

ButterflyWings

Hi chiming in here - I always want to go with the lowest amount of medication possible and it is not the first option for us usually. But we aren't "anti-chemicals" either. Because my DH became a danger to others (and me) when hallucinating that intruders were arriving nightly, Seroquel was prescribed 2+ years ago and has made life livable. Started at 25mg with no sign that he even took anything. Increased to 50mg and his crazies calmed noticeably. Several months later we needed to increase to twice a day and last autumn I think, added a 3rd dose. Anyway, he his up to 300 mg daily of Seroquel now, which is simply necessary to keep him safe and sort of stable (except when the UTI monster shows up)- then all bets are off. 

Is Ativan the same as Lorazepam, by any chance? If so, that is something his team added on an "as needed" basis recently, when his exit-seeking and/or breakthrough agitation ramps up (they describe it as unmanaged anxiety). I have only used it rarely, and only half a dose (.25) but it does mellow him out without sedating him. For evenings, I keep Melatonin liquid on hand...up to 10mg to help him sleep if needed.

***But I wanted to mention, our nurse practitioner (NP) cautioned to only use the Lorazepam before sundowning time...like strictly only morning to perhaps no later than 1p. She said it has the opposite effect (paradoxical I think was the term?) for some people if given later than that. Said it could be ok, but you don't know until you try and if he was one who reacted to it after noon-ish, it could be like Joydean described, making things worse and/or behavior could be off the wall over the top. I wonder how many caregivers know that the time of day a medication is given, could factor into its success or not? I had no idea.

Comrade

I like Seroquel but Sue's body doesn't. She begins to have tremors with jerking, etc.

Her primary care took her off and the tremors stopped. It just didn't work.

At one point in my life, I was under a lot of pressure and was prescribe Seroquel in a very low dose. It worked beautifully.

darn*, trial and error feels so amateurish and wish their was a playbook that works and has just a little "one size fits all".

I don't like experimenting with Sue's body and mind.

Comrade

Thank you and am going to review the links right now.

White Crane

Comrade, like Paris 20, I resisted giving DH chemicals.  I went to a couple of support group meetings and got really nervous when they talked about giving medications to calm their loved ones.  I swore I would never drug my husband.  That was early on.  As things have progressed, those medications have been a tremendous help.  He now takes seroquel in the evening and sleeps through the night...which means I get to sleep through the night, too.  During the day, he takes an Ativan at lunchtime and it helps get him through the afternoon.  I don't feel guilty about giving him these medications.  He needs them to help him function.  And I need them in order to take better care of him.

Jo C.

C; here is a good link regarding med use from  the Association for Frontotemporal Degeneration. FTD of course is not the same as Alzheimer's Dementia and some meds can be contraindicated in FTD such as the cholinesterase inhibitors.  My LO was placed on Aricept by the Board Certified Gerentologist and oh boy . . . . the FTD went over the moon with dreadful behaviors until the med was discontinued by the dementia specialist who was new on our care team.   Quite dramatic.   Just a suggestion; you may want to check a listing of cholinesterase inhibitors to determine whether your wife is presently on one, or you may already know the class of each of her meds.

https://www.theaftd.org/for-health-professionals/treating-ftd/

J.