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I’ve wrote already about my 92 yr. old mother with dementia, but I need more help.


I took her to California on May 11 to AL. Since then, she has still not adjusted and won’t sleep, screams in the morning, afternoon and at bedtime. They put her on a low dose med 2 weeks ago and have increased it to twice daily and now upped that. Also, they are trying melatonin to help her sleep but it’s not helping.


I am afraid the AL will say she’s too disruptive and ask us to move her, but no one can care for her. She needs 24/7 care, with professionals who see this daily. She can’t be the only one to behave like this at a new place. She was a nice lady but with her dementia she has changed so much.


I thought she’d make friends and adjust but it’s not happening. This has not turned out at all like I thought. I’m at my wits ends.


Help!

Is your Mom under the care of a geriatric psychiatrist?

My mother’s facility that has one that comes in. We needed them on board when the GP was out of ideas.
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Reply to cxmoody
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"dementia she has changed so much."
Change to a new environment for people with dementia can be challenging the adjustment period I have seen last a day or two to as long as 3-4 months. Hopefully, she is a smaller memory care unit with A supportive environment for people with dementia that is designed to enhance their well-being and quality of life. Here are some ways to create a supportive environment at home:

Lighting
Make sure the house is well-lit to reduce the risk of falls. You can also try using LED lighting that can be adjusted throughout the day.
Colors
Use contrasting colors on the walls and floors, and select bright-colored furniture that stands out. Avoid patterns and stripes, which can be confusing.
Safety
Ensure floors are non-slip and free of trip hazards like loose carpets. Check that locks, doors, windows, stairs, and balconies are safe and may need modifications. You can also install handrails and mark the edges of steps with bright tape.
Outdoor space
Make sure outdoor spaces are secure to prevent wandering off. You can also install raised flower beds and sheltered seating areas.
Sensory stimulation
Use music, aromatherapy, and tactile objects
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Reply to NJCALA
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She is in ALF?
That is unusual, I need to tell you, for ALF to allow that to go on and remain in ALF.
You are not responsible for her happiness.
As you say in your profile, this is not the mom you used to visit on nice trips. This is a mother with dementia. I feel she should be in memory care. Or yes, in a nursing home if this continues. I don't know how much in contact you are with the administration, but if your mother's medical team cannot get some sort of handle on this then it will be a move to psychiatric inpatient rehab to try medications that will work or to plan for a move to care where sadly your mother may require medications that result in her being "too drugged". I know you understand the options here if this cannot be handled by a medical team.

I don't know how cognizant your mom is now, if at all. She needs to understand that this is now where she lives and that there is not now and never will be again in her life any better option. But that there are WORSE options such as a shared room in memory care where she receives drugs to "keep you sleepy". If she isn't cognizant enough to understand any of that and perhaps control herself to the extent she has any control, then that information would be cruel and useless and shouldn't be given.

You didn't cause this.
You can't fix this. There will not be happiness again for your Mom and the hope for that is likely pie in the sky (not that miracles don't happen). Your mother has severe dementia. The moves have been very disruptive and have perhaps caused a more quick escalation of what would have come anyway. We all hope we can die before this happens to us. My brother when diagnosed with probable early Lewy's was so able to discuss his fears of his future and his wish to die before all controls were gone from him including self-control.

I am so sorry. This is awful. This has no happy ending I fear. I would now consider close contact with the ALF, plans for what the future would mean in MC, and most of all CLOSE CONTACT WITH MEDICAL TEAM. Try everything and anything would be the way to go. For some today it is even medical marijuana which has resulted in miraculous turnaround for a friend's mom in nursing home in Texas. I wonder if the medical team has tried a low dose anti depressant. Or is she ON one and it is making it worse? A hospital gave my brother an ativan to calm him and he went off the rails nuts climbing the walls. People have odd reactions to medication.

I am so sorry. As you say, this isn't going how you hoped. You did a lot to make this as good as you could and NOW LOOK! You are going to have to settle into the fact you are not responsible for her happiness and no amount of money or care on earth can buy it for her. This is now experimental territory in the hopes that "something works" to calm her. My brother hoped to die before Lewy's could really "get him". He did, 1 1/2 years after diagnosis, of sepsis. I will be eternally grateful, as was he those last weeks in hospice. Never was anyone more ready to go.
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Patrice2 Jun 25, 2024
OMG Alva. Your sentence “you are not responsible for her happiness”. These exact words have been my mantra for the past 4 1/2 years as I deal with my parents in AL. Also “I am not responsible for their relationship”. Helps a bunch.
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My godmother had a difficult time adjusting when she entered her facility.

She had Alzheimer’s disease and macular degeneration. She eventually went blind.

My godmother was placed on meds. It can be challenging to find the right meds and dosages.

I agree with cxmoody. Your mom needs to see a geriatric psychiatrist.

Best wishes to you and your mother.
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Reply to NeedHelpWithMom
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It sounds like your mother is now beyond assisted living and really needs to be in memory care instead.
Memory care is better equipped to handle the issues your mother is presenting with.
Best wishes in getting her moved over to the memory care unit, which is hopefully attached to the assisted living she's already in.
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Reply to funkygrandma59
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I agree that the adjustment period is different for everyone and 1-1/2 months is not that long, in some cases.

I also agree to keep adjusting the meds. I takes time for her body to recalibrate to those changes every time, like 2 weeks. This is a pain-staking process but will pay off in the end.

Is she leaving her room for meals? How is she managing any other ADLs, like hygiene?

Has she been checked for a UTI, just to discount this variable?

Do you know what type of dementia she has? Vascular dementia can produce some very unpleasant personality changes, such as anger, agitation and violence.

I'm so sorry for this distressing situation. I wish you success in finding the right answers and care for her. Please do self-care, since this is very hard on you as well.
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Klopes Jun 25, 2024
She hates being in her room and is always by the front when anyone visits. She hates bathing, it’s a fight. I think her medication is interfering with her appetite too. She used to clean her plate, now she picks and is losing weight. It’s a struggle.
thank you
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I’m so sorry. This is exactly the situation I experienced and starting to find my mom was not getting the care she actually needed as I just don’t think they are equipped to help her properly even though I fell into that as well thinking they would.
This in my opinion looking back is why my mom could not settle in. My fear was long term care wouldn’t be good and she would feel more isolated and shress
However she ended up in long term 3 months after I had enough of the fact that they couldn’t deliver on the care or help her settle well. She’s better cared for now
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Klopes Jun 25, 2024
I feel the same. I thought this one would not be your normal old folks home, but it is. They prefer her in a wheelchair, even though she went in walking with a cane, and just let her be.
I think I’m moving her out in July. I don’t want her to die there with strangers.
thank you
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It’s so sad to see your mom like this I’m sure. I’d ask people to pray for her. I hope she’s not hurting or dealing with a UTI. In her dementia she could still be scared of all the strangers and new enviroment. I would be. I hope they are treating her with kindness. It’s amazing how negligent these places are because they are understaffed. Let’s face it, they miss things all the time.
I will be praying for you both
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Tajann Jun 25, 2024
I agree with you, praying they are treating her the kindness. My mom is in an AL/senior living facility and the amount of follow up I've had to do regarding her medications alone is disheartening and my mom is only 78.
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Good Morning,

Perhaps Citalopram in the morning and a low dose of Ability in the evening along with Trazodone. The Trazodone may have to be halved but it's hard depending upon their body weight too.

It takes time for these adjustments (meds) to settle and see what your mother's baseline is...

How about a 6-month check up with a Geriatric Neuro-Psy doctor, once the proper dose of meds is established. Sound like she needs calming but not too much so she is not like a robot. It's hard because every person is different and depending upon what other medications she is on and the side effects is another whole avenue.

UTI's can wreak havoc on the elderly. A shot of cranberry juice each day and water in moderation can control dehydration. Their brain is broken and the dots don't always connect the way they should.

An Upwalker Lite and a routine established once her medications are adjusted.

I know it's hard to see your loved like this but with the right Geriatrician or if there is a relationship with HouseCalls MD or the RN at the facility can all assist.
I'm sure you have already done this.
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VBRobertson Jun 25, 2024
Are you a doctor? If not, I would not recommend practicing medicine without a license.
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Is she residing in an AL or Memory Care as they are different areas. Sounds like she needs memory care where staff are better trained to handle her symptoms, medication management for symptoms, etc. Just a thought. The senior living community my mom is at has two different areas; her and I have seen residents on the AL side who very well need to be in the memory care area as they are disruptive to the residents who are relatively independent. "Typically" the memory care side is better staffed as well. There are several medications to help ease her anxiety, antipsychotics, antidepressants, sedatives for nighttime, ask to speak to the overseeing MD.
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Klopes Jun 25, 2024
She’s just in AL but her behavior says probably should move to memory care, she is disruptive. They’re trying Risperidone now. I wanted her to calm down but not too much. It’s really hard
thank you
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The more you treat them as a "problem" it's better to regard the horrible disease of dementia as ...something to live WITH...
Ain't never gonna be a cure and that's the dilemma of "support groups"
But I find encouraging a smile or a simple pleasant activity to be better than all the POWERS OF ATTORNEY....DRASTIC INTERVENTIONS....CHANGING SURROUNDINGS and all the "heavy" stuff I read on here.

..................my opinion.
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Klopes Jun 25, 2024
Changing her surroundings is why this all happened, I think. She had a routine and I messed it up which caused her to be anxious. I know her because of her dementia, a routine is very important and she doesn’t have it anymore.
thank you
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It will take time for your mom to adapt to her new environment. Try to visit often. Bring in some familiar personal items to her.
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Klopes Jun 25, 2024
See that’s just it. I am in SC and she’s in California. I moved her back where all the family is, here it was just me 24/7. So they are visiting but she wants to go when they leave and that’s another time she starts screaming. They’re trying, taking her treats and spending time.
thank you
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My mom and time in the facilities has shown me that mom needs/responds better to one/one care and cueing. I asked the receptionist in her AL if anyone had private caregivers and she pointed me to a wonderful woman who got me the best person for mom. She has been with us for 4 years and has moved to MC with mom. Mom is calmer, less anxious, likes having her own person who can help her and “read her mind”. The facilities are lonely places for elderly. The other residents may be hard to talk to because they are “broken” too. The staff is slim and have many jobs to do and don’t have the time. Mom’s caregiver is her advocate, helps her eat if needed, gets her the things she wants, showers her, lotions (AL and MC do not do lotions). Puts in her eyedrops, talks to mom, walks with her so she doesn’t fear of losing her way, takes her to events-mom was refusing because she was fearful of not getting back to her room when she wanted to leave. 3 facilities and they are all the same. Some staff are wonderful but they are limited in their face time with residents. When I first got mom a caregiver, I gave the lady some background and introduced her to mom as my friend. We sat together and with the background, mom liked her. They made plans to get together without me (I said I would try to get there but didnt) and it has been wonderful. Mom at one time told me she didn’t need a sitter but did it because I asked her to. So glad it worked out.
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Kchristian55 Jun 25, 2024
What is the cost of a caregiver? Does she live with your mom?
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It may be time for your mother to be put into a memory care facility. The AL facility will tell you if you should move her into memory care. If she becomes too difficult for them to handle, they wil insist you move her.
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Reply to BurntCaregiver
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My cousin in Philadelphia mom has Dementia and what she did was put her in rehab for short term until they got her meds adjusted and then she brought he home with home health care. And now things are working out great. And put she can get extra assistance for her mom to pay for the care. You also can use family to help out also.
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LoopyLoo Jun 25, 2024
It’s not wise to expect family to help, at least not on a consistent basis.
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as others have said - do they also have a memory care unit in this AL?

dont worry too much yet. I'm sure they are used to seeing people getting agitated a lot when they first move in. At the place my dad is at, there was a lady who was scooting herself down the hall, and then screaming randomly at different times of the day. They let it go for a while, but after a month or so of that, they moved her to the memory care unit..
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It’s not uncommon for people with dementia to experience behavioral changes, such as aggression, anxiety, and depression. There are meds for those issues.
That said, I find it interesting that your mom was screaming in the morning, afternoon, and at bedtime at the AL in California. Is she still doing that? I ask because I have worked with autistic students who engage in similar behaviors intended to get them out of doing work, sent home (not happening at our school), and/or to express discomfort, displeasure, and/or refusal. We had behavioral specialists who would do a Functional Behavior Assessment to determine the cause of the behavior. The they would develop a Behavioral Intervention Plan to reduce the behavior. Every member of the team is trained on the BIP, so there is consistency across all activities. Could your mom be using screaming to get out of the AL or MC and back home where she’s comfortable? It might be a good idea to have someone who specializes in these behaviors in patients with dementia. They may be able to discern whether these behaviors have their roots in the dementia/biological systems or whether they’re purely behavioral, intended to achieve a goal.
Have the medications had any demonstrable effect on your mom’s behaviors? Since she still screams “when necessary,” I’d say either “probably not,” or they were not the appropriate solution (those might be the same thing).
I hope your mom and your family can find the answers, so that everyone knows the peace that you all deserve.
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Klopes: Perhaps your mother requires residence in a memory care facility now.
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Reply to Llamalover47
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You brought her to CA because there is more family there? Are they helping? Does the local family presence help to soothe her? Im sorry you are dealing with this. I was a few states away until I moved to my home state to handle my 90+ year old parents stuff. It was too much hassle long distance. But, that said. I miss my independence and the buffer the distance created. Don't give it up too soon. There are medications. Let the local family step up and provide some support. A cross country move with a dementia senior could not have been easy. See if there is a way to make it work. would be my suggestion. And take care of yourself. If she is safe and cared for. Then its ok. Take care of yourself.
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Klopes Jun 26, 2024
Yes they are visiting her a lot and keeping me updated.
She does get upset when they leave also, but not sure how to stop that.
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I know this is very difficult for you. My heart goes out to you.
You do not indicate if and/or what level of dementia your mother has.
I know (from experience working w one main client) that 'trying' out various medications can be a very heart-wrenching/difficult process - as the meds are affecting her brain (and emotions). It is, unfortunately, a 'trial and error' process to find the right balance and drugs.

To ease your fears/concerns of the facility asking her to leave due to being disruptive, I suggest you discuss your concerns with the administrator and dept manager 'on the floor' together. Yes, facilities are very familiar with these transition situations.

See if you / family / others (volunteers) can visit more often.
- From her point of view, she is confused and frightened, and perhaps doesn't know what is happening to her (due to being in AL and the meds).
- Someone holding her hand (if that is possible) might be able to calm her down and/or just being there with her.

Speak to the facility MD if you haven't already.

Read the following and do some research. (Esp Teepa Snow, one of the country's leading experts on dementia - see her website, call, get her books).

Be careful with Melatonin:

See this website: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6699865/#:~:text=Safety%20concerns%2C%20especially%20among%20elderly,rising%2C%20and%20increased%20sleep%20disruption.

In part, it says:

Caution should also be applied in the use of melatonin for patients with dementia. Although Wang and others,10 in a metaanalysis published in 2017, reported that melatonin may improve nocturnal sleep time in patients with dementia, a Cochrane review published the previous year found no evidence that melatonin affected any major sleep outcomes in this population.11 Reassuringly, no detrimental effect on cognition or activities of daily living was detected.11
Melatonin is generally well tolerated, and it has a low potential for abuse and no significant withdrawal effects.12,13 

However, side effects may include residual daytime sedation, irritability, restlessness, abnormal dreams, anxiety, nausea, and diarrhea.12,13 

Although melatonin is usually considered safer than benzodiazepines, an increased fracture risk has recently been reported with this drug, and caution should be advised for elderly patients at risk for falls.14
Melatonin is only one option in the armamentarium of sleep solutions for older adults. On the extremely harmful end of the spectrum are benzodiazepines ...

And then I read:

Is there a downside to melatonin?

Less common melatonin side effects might include short-lasting feelings of depression, mild tremor, mild anxiety, abdominal cramps, irritability, reduced alertness, confusion or disorientation. Because melatonin can cause daytime drowsiness, don't drive or use machinery within five hours of taking the supplement.

Keep us informed. I am sad that you are going through this with your mom. I know it is heartbreaking for you.

Gena / Touch Matters
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Klopes Jun 26, 2024
Thank you for that information. I will ask them more questions at her facility.
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From the Mayo Clinic: Website:

https://www.mayoclinic.org/drugs-supplements-melatonin/art-20363071#:~:text=Less%20common%20melatonin%20side%20effects,hours%20of%20taking%20the%20supplement.

Don't use melatonin if you have an autoimmune disease.

Interactions___________________________ Possible drug interactions include:

Anticoagulants and anti-platelet drugs, herbs and supplements. These types of drugs, herbs and supplements reduce blood clotting. Combining use of melatonin with them might increase the risk of bleeding.

Anticonvulsants. Melatonin might inhibit the effects of anticonvulsants and increase the frequency of seizures particularly in children with neurological disabilities.

Blood pressure drugs. Melatonin might worsen blood pressure in people taking blood pressure medications.

Central nervous system (CNS) depressants. Melatonin use with these medications might cause an additive sedative effect.

Diabetes medications. Melatonin might affect sugar levels. If you take diabetes medications, talk to your doctor before using melatonin.

Contraceptive drugs. Use of contraceptive drugs with melatonin might cause an additive sedative effect and increase possible side effects of melatonin.

Cytochrome P450 1A2 (CYP1A2) and cytochrome P450 2C19 (CPY2C19) substrates. Use melatonin cautiously if you take drugs such as diazepam (Valium, Valtoco, others) and others that are affected by these enzymes.

Fluvoxamine (Luvox). This medication used to treat obsessive-compulsive disorder can increase melatonin levels, causing unwanted excessive drowsiness.
Immunosuppressants. Melatonin can stimulate immune function and interfere with immunosuppressive therapy.

Seizure threshold lowering drugs. Taking melatonin with these drugs might increase the risk of seizures.

In addition, ask the facility Dept Mgr / Nurse:
1) what other medications facility is giving to your mom and the possible side-effects.
2) how do all drugs given to her interact 'together'.

Gena / Touch Matters
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Is she in a AL or a memory care? If she needs 24/7 care and has dementia I am surprised an AL allowed her to live there to begin with.
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Klopes Jun 26, 2024
Yes they assessed her and said she could go.
I agree. They aren’t equipped to take care of her, even though there’s a lot of professionals there.
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It’s time for memory care .
At 92 with dementia , this was a big move for her , which caused a step down that she may not be able to be in regular AL .
Memory care can better handle trying different meds and get Mom less agitated , so she is at peace instead of living in this upset state .
I feel bad for Mom , get her to memory care .
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Reply to waytomisery
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Klopes,

I have not been though this, mom is still home, I just wanted to tell how sorry I am this must be horrible to go through.

Please take care of yourself, I do think she needs to be in memory care. A place they can handle this better
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Reply to Anxietynacy
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It sounds like she is beyond what assisted living can provide and she needs memory care now.

I'm sorry for your sad situation. I really am, but it happens all the time and there really isn't much that can be done for it.
It's not likely your mother will acclimate to anywhere at this point if her dementia has advanced to where she needs 24/7 care. The best possible outcome now would be if she gets put on the right kind of medications to keep her calm and relaxed. She isn't going to get that in AL. She needs to go to memory care now.
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