No Sleep(3)

Kenzie56

Any suggestions on how to move to the guest room?  My DH is up and down all night. He either wanders around or goes to the bathroom and often just thinks he has to pee every hour on the hour. (I know, I am lucky that he thinks he has to pee and isn't peeing in the bed).  Every time his feet hit the ground, I wake up and either guide him back to bed or to the bathroom. I have nightlights every where - he just forgets where it is.  I have tried several times to sleep in the guest room, which is also on the main level. He comes and gets me and wants me back in the room with him. If I close the door he knocks until I open it. I am so sleep deprived, I can hardly function.  Has anyone come up with a good solution? His PCP prescribed Belsomra, but it doesn't really work. He is in stage 6 and doesn't really comprehend what I am saying and can't really communicate to me his needs. MC facility is going to be a necessity down the road, but like everyone else on this site, just trying to get up the courage and decide when the time is right to make that decision. We've been married 43 years and he is glued to my side 24/7.  Suggestions welcomed.

Ed1937

Hi Kenzie. My suggestion would be to ask the doctor to find something that will work to help him sleep. Even if he wets the bed, there are incontinence underwears to help with that. Just pick a major brand. We use Dry Direct from Parentgiving.com. They work the best for us, and others here agree, but not all. Your sleep is very important.

If he gets to the point where he wets the bed, even though he is wearing the best underwear, come back for tips on dealing with this.

Kenzie56

Thank you, Ed, I will.

billS

Kenzie I feel for you, I have gone through the same thing. My wife's memory care doc has tried adjusting her antipsychotic meds and antidepressants up and down and switched types several times, all with no benefit. Finally I tried a particular cannabis gummy (cannabis is legal in my state) which has reduced the night wandering quite a bit. But last night she was doing the energizer bunny routine again, starting around 1:30 AM. I can usually tell when it will be a bad night since she will be constantly wandering our property the day before, and carries that habit over into the night. I can't understand how she is not dozing off all day since she gets little sleep! Next week we finally have an appointment with a geriatric psychiatrist, who is supposed to be the expert on medications. I'm not very hopeful. Sorry I don't have a magic bullet.

June45

No suggestions but much empathy from me and others here on the forum. As I have posted before on this topic, my husband's popping up and down randomly all night is my biggest complaint of caregiving. It will be the reason that I eventually place him in MC if I can't resolve it. And you are right, it takes courage and guts (and lots of money) to place our loved ones; something I just can't muster up yet. I hope someone will have a suggestion that works.

Marie58

Sleep deprivation on my part played into the decision for my DH's placement. Hope you find a solution.

Lills

Ah, yes, I remember that well!  My DH used to also get up 4+ times per night.  He'd turn on the TV, etc.  I, too, was sleep deprived and it's no fun.  

My suggestion is Seroquel!  DH began with 25 mg and shortly after it was increased to 50.  It worked like a charm AND solved the roaming problem.  Yes, DH was incontinent and that's a different problem...

Good luck.  

JoseyWales

Add me to the sleep deprived list. In the past couple of weeks DH has taken to sleeping on the couch, and I get the bed. I still listen for him to get up, because who knows what could happen and if I'm not there he gets angry. 

I've seen some improvement with melatonin. We'd tried it in the past with no success, but either it's working or somehow the stars aligned right and he's sleeping a bit better. A bit. I'm still up each night for about 1 1/2 hours with him.

This is one of the biggest reasons I'm going to place him.

Kevcoy

I'm taking all of your suggestions for myself as well.  My DH is getting up around 2:30 am to make the coffee and usually won't come back to bed.  After he is up he comes in every half hour or so to tell me the coffee is brewing, the coffee is done or if I don't get up he is going to toss out the coffee until I finally give up and get out of bed.  This wouldn't be so bad except for the fact I work all day as a teacher for special ed high school students.  Thank goodness we have to wear masks so everyone wouldn't see me yawning all day long.

Jeep1

Hi, I just joined and the sleeping disruption has started with my DH.  He walks out to the family room and is on the couch.  When I approach him, he looks at me so mean and says I want to be here.  After about an hour or so, I am able to get him back to bed.  Things are declining quickly and on Sunday morning, he said I was not his wife.  This is so very hard and never thought I would see my loving DH like this.

Jo C.

You are his security and he may feel he must be near you as he may see you as his security; that is a difficult dynamic.  But first; I wonder if your husband may have a prostate issue such as an englargement or even prostatitis that is causing his needing to void over and over again each hour; if so, there is medication that can help this.    If not already done, he should also be worked up with a urine culture to determine whether or not he has a UTI.  Those items should rule out (or in) as possible medical causation for the dynamics.

Sometimes our LO at such a stage of AD can misinterpret what is happening or being felt and it really isn't about voiding at all;  perhaps a delusional miscue from a compromised brain, and if all other medical reasons for hourly voiding is ruled out, then he may find benefit from an adjustment in his current medications to more fully meet his needs rather than a non-working sleep med.  NOTE:  Has your husband seen a dementia specialist before?  This may possibly be a situation beyond the in-depth expertise of the PCP.  If this is a nighttime delusional situation or other such dynamic, then the specialist can assess him and aptly prescribe appropriately to meet the needs.  While Risperdal or Seroquel come to mind, the specialist can easily make that determination for what med and what dose would be appropriate for the medical history and his needs.  Or . . . perhaps the PCP can consult with the specialist.

Re bathroom finding:  There was a Member here whose LO also had the bathroom finding issue.  What he did was to put a "plant" uplight in the bathroom lighting the toilet and bathroom up . . . . the light was one of those one puts near a potted plant and aims it upward so it shows off the plant. Evidently this worked for his LO as the toilet and bathroom were indeed lit sufficiently but not overlit to be frightening. Or; just leave the bathroom light on all night along with a hall light.

I have also heard of colored toilet lights that light up the bowl with color so one would know where to "aim," and also makes the toilet easily identifiable at night.

That of course does not stop the behavior of needing you during the night.  That is a hard one under the circumstances.  If it is a delusion or need for your being security, the behaviors are unlikely to stop without help.   It appears his present sleep med is not working and making no difference; so if the doctor agrees, perhaps it can be discontinued but only with a doctors input.   If there is no prostate issue and no UTI, then another medication can be helpful if this is a nightime delusional issue.

Wish I had a better answer, but this is all I can think of from what has been written.  Let us know how things are faring and so hope help is found soon.

J.

Kenzie56

I thank everyone so much for taking the time to respond. My DH has been under the care of a neurologist for a few years and that doctor communicates with the PCP. DH has permanent A-Fib and high blood pressure to boot. He has been on memantine (10 mg twice a day) and donepezil (23 mg) for a couple years and they are no longer helping, like they once did - which is expected. He just had a complete physical and is healthy in all other areas. As for the bathroom - I have a sign on the bathroom doors and night lights in the bathrooms. I leave the overhead lights on in the bathrooms at night as well - but with all this lighting, he has peed in the tub on occasion.  I actually have nightlights all over the house...but he stands in the living room looking around, just lost and then comes back in the bedroom and taps me on the shoulder (if I haven't already gotten up) to ask where the "water room" is.  I'll talk to his PCP again to see if we can adjust his meds.  Last night I tried the guest room again...but he found me and crawled in that bed and the waking up continued there.  I never heard of lights in the toilet bowl...I could give that a try - at least for the aiming part once he is guided in front of it.  Thanks again for all the advice...even our two German shepherds are tired and no longer get up with him at night. LOL

Jo C.

Kenzie, you are doing a very good job of trying everything possible to help the situation; you have left no stone unturned.  I think you are on the right track in having his meds assessed; it sounds as thought there is really not much of an alternative.   I recall several Members who out of long term sleep deprivation being desperate, had their LO admittted for a short period of respite care so they could recoup themselves as it had got so over the moon bad and affecting their health. 

Another Member's LO just would not sleep at night, but did at times during the day, so the wife would lie down to sleep whenever he did.  That seems like a temporary measure and it certainly would upset daily functions and skew the poor wife's own ability for "normal" sleep later.

Just saw the following link from the Alzheimer's Assn., and it has a section on just this topic, here is their input:

https://www.alz.org/alzheimers-dementia/treatments

 

So hope you are able to find relief soon; let us know how it is going.

 

J.