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So we are at the point that I will not be able to change/dress my FIL without some sort of sedative. Two of us can do it, but not me alone. He’s too combative.
I used Ativan (which we abandoned for nighttime because it worked initially then he was worse a few hours later) and waited 30 minutes. He was a little better. Waiting an hour may have been better. But now, 2 hours later, he is a zombie, can’t eat or hold a cup.
For tomorrow I am thinking of giving it to him at 7, dress him and get him in his chair at 8. Recline him and let him sleep until 10 for breakfast. Maybe?
Any suggestions on what worked for you are appreciated. I wish there was something that worked faster and wore off faster.
Hi Mayflowers - Does he absolutely have to be dressed/redressed every morning and night?
We have adapted the type of clothes (and underclothes) my DH wears, as well as how often he really needs to get "dressed" just to hang out at home all day, every day. Here are my current practices:
1)Clothes: DH's wandering was/is triggered by getting dressed. Meaning, he equates changing into different clothes with getting ready for work. It is a major issue that leads to endless redirection or medication to keep him from eloping immediately afterward. I was facilitating agitation (his as well as mine!) by trying to keep the morning dressing and nighttime change -into-pajamas routine. For us, sweatpants and slip-on shirts can last more than 1 day, if using bibs/disposable pads to catch mealtime spills and dribbles. And just like camping out, road trips, long distance travel or other scenarios, its fine to sleep in what he sat around in during the day, if not sweaty or soiled. One less struggle on this journey.
2)Incontinence briefs: Double layering the incontinence briefs works well. DH was struggling to understand my instructions to lift his leg, or push vs pull. And that's on a good day. The rest of the time he was belligerent and resistant to my even trying to help him get wet or dirty pants or underwear changed. So, I learned here to use the tabbed briefs next to his body, and then keep a pull-up over that. Holds things together and prevents him unfastening the "diaper"-style tabbed brief and causing leaks. That way I can quickly remove and replace the wet layer only, as needed without having to get a leg or two out of pants and back on, etc.
4)Sedative: To answer your question about Ativan (I think that's the same as Lorazepam which we have for "as needed" use also.) Hospice provided .5 mg. However, his neuropsych suggested we could instead just increase his Seroquel with a 25mg dose as needed...since he tolerates that well. I got the impression it may be a more forgiving class of drug than the Ativan (?). But he said if I used the Lorazepam maybe try .25 mg, which I have done and it took the edge off DH's agitation so he was not exit seeking and combative. Did not use it to attempt physical care.
**Hospice RN cautioned that some people cannot tolerate that med after noon-ish. Said it causes sundowning type issues for some although they can take it during the morning without adverse behaviors. I avoid this one unless I really can't keep him or me safe.
Bottom line - what is "good enough" has changed drastically here in AD land. And what works for us now may not in the future, I've learned. Nor will it necessarily work for you and your LO. I believe strongly this disease is best managed using the path of least resistance. Wishing you all the best.
When you say "change" do you mean toileting/Depends changing or do you mean putting him in a new outfit?If this is just about putting on fresh daytime clothing, I might limit the number of times weekly this is done. We kept dad in things like dorm pants and sweats that were comfortable to sleep in.If this is a new symptom, I would make sure he doesn't have a UTI or other infection. If this is an escalation of an existing symptom, I would encourage you to explore another class of medication with a geriatric psychiatrist or his neurologist. Sedation trends awfully close to chemical restraints. Perhaps a low dose of an antipsychotic would dial this back without sedating him. IMO, it is kinder to medicate proactively to avoid the anxiety that drives this kind of behavior than treat is reactively with a benzo as a first line approach. You may need a benzo from time to time, but maybe at a lower dose and less often. HB
Thank you for sharing your routine. I've been feeling so guilty for putting mom to bed in the sweats she wore for the day, or giving her a sponge bath on the toilet when a shower isn't manageable. Wow, I feel so much better knowing I'm not the only one who has made those adjustments! She's clean, dry, and comfortable, but we get there differently these days. Thank you!
I’m another who follows Butterfly’s routine pretty closely. DH often sleeps in his “daytime” clothes, usually some version of sweat/athletic pants, and t-shirt. He may, depending on what he does, wear the same clothes 2 days, as long as they’re not dirty or smelly, and he’s comfortable.
He may go a few days without a full bath or shower, instead using wipes to “hit the hot spots”. Again, depending—but he’s not active, and can still toilet pretty well. But really, there’s no need for him to change into different clothes much, unless/until they’re dirty.
As said, thoughts about what’s “good enough” change after Alzheimer’s. The least resistance, etc. Obviously, diapers/incontinence is a different matter.
My mother stays in the same clothes for the day and night unless they are soiled. Some type of sweat or pajama pant that are easy to sleep in. She doesn’t do anything so she’s not dirty. She gets some sort of complete bath once a week. Every toileting session is a complete cleaning of that area and I wash her face and her hands as needed. Lotion her up daily.
She’s disliked changing clothes for about three years so we adjusted to her.
Thanks to everyone for the replies!
Butterfly Wings - unfortunately we do have to change his clothes twice - he requires a one piece zip up the back pajama or he will remove his diaper (or pull it out) and pee everywhere and be soaked from head to toe (plus the bed, floor, walls) He still is slightly wet with the pj’s every morning but not head to toe. But the slightly wet pjs still have to come off.
He has been able to pee outside of everything we’ve tried before the onsie - even when he cant undo the diaper, he just pulls it out of a leg hole or where ever. It wasn’t unusual to find his diaper dry and everything else wet.
So the onesie has been an improvement because I don’t have to bathe him head to toe every morning to wash off pee.
We only shower once a week when DH is here. The rest of the week it is spot bath like you do. The CNA does a more thorough bath too once a week. He doesn’t mind the baths as much as the changing, oddly.
I may try a smaller dose of Ativan. He did not do well on seroquel.
HB - it two weeks but the hospice doc finally called in another antibiotic for a UTI. We’ve suspected it for a while. This is his second treatment, the first helped some but I don’t think it wiped it out.
UTIs....devil on steroids sometimes. Unfortunately they sometimes require a specific antibiotic, thus the culture.
Jfkoc, the first one was a sulfa, this one is Cipro. I’ve asked for a culture for 3 weeks now, but they decided to just treat instead. I think this goes back to a shortage of nurses maybe - but no one seems to want to cath him for a urine catch.
Why can’t I just wring out a diaper into a cup, lol
Speaking of catheters, my good friend said her mom (dementia) getting a catheter was the best thing ever… and despite the warnings she never pulled it out or got a UTI. I’m seriously considering it
I know the disease can cause combativeness May flowers but it
can also be caused by a medication or has that option already been exhausted.
Seroquel caused it with my dad. But once he was put on escitalopram 20mg (we
could give all at once or half morning and other half night) he became pleasant/he
was dad again.
Hospice added on ativan again mostly trying to find dad some
sleep relief. At 3mg he could do nothing
to help us help him not even the next day. At 2mg, we had same results. 1mg is
the most his elderly body can tolerate. With the ativan I still felt it was problematic
issues like making the dementia worse as far as memory, slurring words, and at
time a bit on the feisty side. Glad the hospital took him off that one but not
happy about the escitalopram but trying to see how it all goes while under
skilled nursing at the nursing home.
When dad lived with us, we also did the once a day change
because he would be wet during the morning. Mornings I knew I could get in a
really good sponge bath and lotion (the works) while he was on the toilet.
UTI also caused this for dad a few years back. He had a
really bad one. He was throwing punches, kicking, and trying to head butt. Things
I’ve never seen dad do. It was a battle to clear up.
I see that you've updated. The two experiences we've had with hospice is one would help catch a urine sample with a urinal and then the other would not catch a sample at all and only wanted to treat.
I just fought with the nursing home for two weeks for a catheter removal. I don't know. In my opinion, they also can be trouble and will definitely depend on your love one and the handlers.
Olly, thanks for replying. He’s only on melatonin, Zyrtec, and reflux meds now. Until the recent am/pm combative behavior with changing, this has been the been the best combo. He is pleasant, relaxed, and alert during the day and sleeps a good 12 hours at night, and eating/drinking a ton. He doesn’t mind anything we do during the day, even toileting if I don’t have to pull pants down (he’s very private). Nightshirts have helped during the day.
He came here from the hospital after a fall at the MC facility. After randomly pushing two residents over a period of 3 weeks last year, he was sent to a Geri-psych facility where he was put on Risperdone, Ativan, Lexapro, Lithium, Donepezil, Gabapentin, and Memantine. He was a complete zombie during the day and tossed and turned and cried out all night.
The hospital took him off risperdone so he would wake up after surgery. He weaned off the rest here with help from his neurologist. That made a world of difference in his behavior and sleep overall. That’s why I’m so hesitant to put him back on anything…
You already have a lot of very good suggestions. Just wanted to mention sedatives did not agree with my mother either. We did not use Ativan though. We saw much of what you are seeing plus, if given for any length of time, I believe they caused mood swings. There's also the unsteadiness to deal with.
I would also caution against antipsychotics because they come with a lot of side effects and risk. I am not saying there isn't place for them - my mother is currently on the lowest dose possible of one - but I would say to try those as a last resort. I am uncertain this is the best solution for her and am hoping to get a review soon.
I do not know what medication your FIL is on but, perhaps, there is an antidepressant that could be helpful to relieve the anxiety that would be helpful to your situation. Also, the combativeness is specific to a certain task, while he is relatively good the rest of the time. I'm sure you are doing this but I'd try to explore every option and every way to manage the behaviors without further medication first. You may want to try aromatherapy too.
Update, well we are nearly finished with the Cipri, and the combativeness did not improve a lot, so we are back to square one. I also feel he is not voiding during the day. His diapers have very little urine but at night he is soaking his diapers, clothing and bed.
Is it possible he is trying not to pee? He keeps doing a planking thing - either on the chair or toilet. When he sits up straight on the toilet, he says “ow”, He also does not appear to be fully evacuating so I’m not sure which is which. I’m going to share this with hospice today as well - the nurse that comes out here is not helpful at all. She’s the one who I told for 3 weeks I thought he had a UTI and she never followed through with the doctor on it. He really may need a catheter, at least temporarily.
Anyway, we were given a green light to try risperdone. He was on it before the hospital took him off so it’s the only med we haven’t seen how it affected him firsthand. He’s been on a very small dose a few days and so far he is still trying to be combative but too groggy to really put up a fight. The downside is now he is not eating well - he is too out of it.
Thanks for the advice Olly. The nurse took a look, and he is definitely having trouble or trying not to void. His bladder is so full. He won’t go lying down either. Flomax (Tamulosin) has caused delirium and agitation in him so that’s out. We’re working on the constipation, it’s slow but happening. He took Gabapentin for neuropathy years ago, he was put back on it at the hospital after surgery I January, probably for pain. We are treating the pain when he grimaces or seems uncomfortable- he never tells us he’s in pain.
I am trying Solaray D-Mannose with CranActin too I haven’t noticed any stomach issues but will keep an eye out.
They are going to cath him today. Thankfully, it’s the nurse I really like and who is very competent. The plan is try it for a few weeks while trying to clear the UTI. They had to do the same in the hospital after surgery - he had a UTI then too, was holding back and was painfully full but the catheter gave a lot of relief.
Day 2 of Risperdone was remarkable! He was pleasant, cooperative, alert, ate and drank a lot, and he started communicating. He walked better and we had no issues getting him in the shower. He was talking so much yesterday, full sentences and asking questions. Some word salad but we could understand what he was trying to get across. For example, he asked me what kind of chickens I raised, corrected me on something about WW2 (he was a history buff), whistled for the dog, remembered his other daughter in law gave him a hat for Christmas, asked for a toothbrush, told my husband he was burning dinner (lol) and called me by name. He hasn’t talked that much in 6 months. I got about five full smiles, teeth and all.
I know it’s temporary but wow, it was almost like the movie “Awakenings”. Have others had their LOs respond this well to a med? I’m cherishing it but I’m also tentative and bracing for the other shoe to fall.
Back again. So they couldn’t get the foley in! They kept hitting something and couldn’t get any further. Whatever it is, makes me wonder if it’s the same thing keeping him from voiding.
Very odd. Waiting for next steps from the hospice doc. I’m guessing a urologist visit or in home ultrasound if they do that.