I am a first time poster. Please read if you have time. I need to talk to someone that understands. Please don't think/say I am stupid. I posted on another forum and the posters said I should know this but I don't... I'm learning.
Don't have to read the whole thing but main questions are:
Is the walking and going in/out of the house all the time agitation?
Will low dose Seroquel 12.5 mg stop the hallucinations, paranoia, and non stop walking? How often should it be given in a day?
My father was diagnosed with severe advanced dementia/alzheimer by his PCP in late Feb of this year. We've been dealing with it since December 22.
I just feel like I can't continue with the behaviors he has developed. Doctors so far are of little help in explaining to me why he is doing it or the stage of/kind of dementia he has. From what I have read I think it is Stage 6.
He walks all the time. He can't be still. He is in and out of the house constantly.
He hoards and hides items. Ties up his clothes.
He can dress himself but has come out of his bedroom with 4 shirts on, underwear on over his jeans, and various other combinations of dress.
He can't sleep. Doctor gave sleeping medicine which worked for a while. Now he just wakes up in 3 to 4 hours still half asleep. I have to put him back to bed and he will be up again in an hour.
He talks about wanting to go home all the time. Makes up things like he has a job to go to at 3 am. Sings and hums to himself. Talks and it comes out like gibberish or foreign language.
He gets agitated (I think), aggressive at times, has hallucinations and is paranoid that people are stealing his things.
He has become incontinent with his bladder. He will just go to a corner and pee thinking no one can see it.
I've tried so hard to talk to the doctors and get help. His PCP seems concerned but doesn't have time to listen. I finally got into a neurologist and he said "its dementia you will have to deal with it". No offer of any kind of medication. No staging don't believe in it. Said he didn't believe in different types of dementia.... they all are the same.
Last visit to doctor he prescribe an antipsychotic. Lowest starting dose knocked him out yesterday. I worry he will fall.
We've looked into memory care unit. They don't have enough money to afford it except for a few years. The people seemed very friendly at first. We did not put him there due to various concerns raised by siblings who do not participate in his care. Looked at other memory care places and can not afford them. Went back to the first one and they seemed aggravated. Not so friendly I guess because we didn't put him there the first time. Saw Other things that made me worry about him going there. I feel like we have no other choice though. PCP said we've dealted with this longer than most families would.
I am mentally and physically exhausted. I sleep 2 to 4 hours a night. He is waking up multiple times a night. Gets up very early. Then I listen to him talking all day, try to run interference on his hallucinations/delusions or run when he tries to go out the door when he shouldn't.
His wife feels the same as me. I am with him more but I know has affected her just as much. I can see it in her face. She is worried about putting him at this memory care facility too. Something doesn't seem right.
I just needed to let this all out. The Memory care said kick him out if he became aggressive and said they would send him to a physc ward. Afraid they will just take the money.
Would appreciate any help. Thank you.
11 Answers
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Your situation is very hard and I think dad is very unsafe at home. Please secure the doors ASAP as you do not want him wandering away. You need a helper.
I think his behaviors warrant more medication as well as placement in memory care. It's really time. His dementia seems quite advanced and it is just too much to deal with at home without a lot of in home helpers. If the money only lasts for a year or two, then he will have to be transferred to a facility that takes medicaid but you can cross that bridge when his money is close to running out. And you have no way to know how long he will live like this.
Who has POA? You? Or his wife? Whoever it is needs to be make sure it is activated as he is certainly incompetent. And then that person needs to make some tough decisions ASAP. Waiting is only putting him in danger as well as you and his wife. It's pretty unsafe and you all deserve better.
Best of luck.
Agitation is one of the most common and challenging aspects of care among patients with dementia due to Alzheimer's disease.
Agitation can include symptoms that range from pacing or restlessness to verbal and physical aggression. These symptoms are leading causes of assisted living or nursing home placement and have been associated with accelerated disease progression," Farchione said
In both studies, patients who received 2 mg or 3 mg of brexpiprazole showed statistically significant and clinically meaningful improvements in agitation symptoms, as as shown by total Cohen-Mansfield Agitation Inventory (CMAI) score, compared to patients who received placebo.
The recommended starting dosage for the treatment of agitation associated with AD dementia is 0.5 mg once daily on days 1 to 7; it was increased to 1 mg once daily on days 8 through 14 and then to the recommended target dose of 2 mg once daily.
The dosage can be increased to the maximum recommended daily dosage of 3 mg once daily after at least 14 days, depending on clinical response and tolerability.
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When I say "placing" someone What I mean is in a facility that will meet their needs in an appropriate manner.
That could mean Memory Care if that level is appropriate.
For some it could mean Assisted Living. I usually do not mention that for someone that has dementia as there is ALWAYS a possibility that the person could walk out and not know how to get back, or leave wanting to "go home" or to the store or any number of places.
It could also mean in a medical facility that will be able to care for mental and emotional problems that arise.
The main goal is that the person with dementia is SAFE and that family members are safe.
I also do not limit "safe" as physical safety but mental and emotional safety.
You should have allowed him to be taken for a Psychic evaluation. They would have run the tests necessary and found the correct meds for him.
His wife should see an Elder lawyer about having their assets split. Dads split going towards Dads care, when almost gone then his wife applies for Medicaid. At that point she becomes the Community Spouse, remains in the home, has a car and enough or all of the monthly income to live on. I am just giving u the basics, an Elder Lawyer can go into more detail.
By the way, your questions are not stupid and there is no way you would have known the answers.
Dads wandering is concerning. If he wanders when you are knocked out from the exhaustion you may not hear him leave. Make sure you have an alarm on each door that goes off if the door is open.
I would continue to look for placement. If he lives long enough and runs out of money you can start the process if getting him on Medicaid. There are a lot of posts on here about what and what not to do regarding that. My Mom is about to run out of long term insurance and I am prepared because of others experience on here. She had money but when it runs out I know what I am facing.
if you do keep searching for a facility ask if they also have medicaid beds. At one point I had both my parents secure and near me in assisted living. Dad passed and Mom is still here 4 years later. Over two years ago she went into full respiratory arrest. They placed her on Hospice and last year moved her back to palliative care. Hospice had given her 2 weeks at most.
If I had a crystal ball I would have perhaps moved them to a facility that had Medicaid beds just in case but statistically she has gone far beyond the average stay in a facility. I think my hands on attention has helped her plus my Grandkids visits etc.
my worry is she runs out if money and I have to move her, that is not something I thought would happen
Remind him he is at home, he is safe. That is the important thing to remind him of..."you are safe, I'm here, I will take care of you" This reassures him that he is where he is supposed to be and that he is safe.
As far as the medication. Each med works differently, or I should say the person may react differently. 1 dose for someone might be the right dose but a different body might need a different medication or a different dose.
You need a break and I am sure your mom does as well.
Are there any Adult Day programs in your area? If so get dad involved. A few days a week would give you both a break and it would keep dad active.
If dad is a Veteran check with the County Veterans Assistance Commission. They can help determine if he qualifies for any programs through the VA. AND the VA will pay caregivers to help care for the Veteran. This now means your mom and or you can get paid to care for dad.
And depending on where and when he served he may be entitled to a lot of other benefits. It is worth a call.
I do have to STRONGLY disagree with the doctor that said all dementias are alike. There are "traits" with some that do not happen with others, one Lewy Body Dementia should be diagnosed as there are some classes of medications that a person with LBD should not take.
The decline from Alzheimer's is slow and stead, the decline form Vascular Dementia is very different and where the decline from Alzheimer's is like walking down a ramp the decline from Vascular Dementia is like walking down stairs There can be declines literally overnight. (my Husband had both)
there are many types of dementia.
If you can get an accurate diagnosis, not just "they are all the same" that might prove helpful.
If you and your dad's wife (I am guessing this is a second marriage) can find an in person Support Group that might be helpful for both of you.
A call to the Alzheimer's Association can also help. They have counselors 24/7 that will answer questions and be there in case you need to talk. They should also have a list of Support Groups. Your local Senior Center might also have a list.
While you have toured some facilities offering Memory Care, and dad remains at home at this time PLEASE be open to placing him if needed. If it becomes unsafe for you or his wife to care for him, or if becomes unsafe for him for you to care for him at home you have to place him to keep everyone safe.
Anytime "we" can be of help just ask a question. With all the knowledge here and all the people at least 1 of us has probably faced a problem that you will and we may have ideas, suggestions.
And this is also a safe place to vent!
I believe he has Vascular Dementia. He has a history of strokes. A TIA about 20 years ago. Then the PCP said he believed he was having multiple mini strokes starting in 2021. I believe they didn't affect his physical movements but slowly affected his brain. Brain Damage from an old stroke and brain shrinkage. He was in a car accident in December. I believe he hit his head although nothing was found. He said he felt fine but that is when everything hit the fan so to speak.
You say "placing him" do you mean in a Memory Care or a Psych Hospital?
I appreciate everyone's advice and help.
I didn't even know about geriatric psychiatrists until that incident. I am trying to find one. PCP is referring to new neurologists that is suppose to refer to geriatric psychiatrist. This is so overwhelming.
I thought if we could get him in the memory care unit maybe they could get him medicated better but I don't know. The nurse said he had to be on a antipsychotic before he came in while the sale person said he did not. We just need to get him to a more secure environment. We don't have any help from family it is just the two of us. Only thing family does is laugh at the things he does which are not very funny if you are living it.
I will also try to work in reading the books suggested and break up my questions in to separate posts. Thank you all again.
With dementia there is often no "why" as to behaviors. It might be better not to try to understand them.
We found that geriatric psychiatrists were the best folks to both prescribe meds and explain what was going on with my mom with dementia. It might be worthwhile to find one.
Yes, if dad becomes aggressive, he needs to be in a psych facility to get his meds adjusted. Please don't resist that. It's what he needs if he is in danger of hurting himself or someone else.
You aren't stupid. Just very worn out and tired. If he acts out, call 911, having him transported to the hospital and refuse to take him home.
A bad experience with one home caregiver means you try again to find a good fit.
Your father also has behavior issues, which makes it difficult to place him. Keep working with the specialist and not the PCP. He is in a trial and error period. If he ever becomes violent, call 911 and ask for an admission under the Baker act so that he gets a 3 day psych evaluation. This may mean med adjustments again.
You ask several questions that require some book reading. Separate your questions on this forum to gain more specific answers. Doctors have little time to tell all and there is really no road map for this.
Most of all, do not ignore your feelings of despair but choosing just helping at home can lead to caregiver health problems or death. Attend a Alz support group to find out common problems and search for solutions.
Your dad is exhibiting classic dementia behaviors, all of them. Ativan is a calming med that may help him. It did my mom. As far as other meds go, only dad's M.D. is qualified to answer those questions about dosing, etc.
You can't keep eliminating all avenues of help......just keep trying things and in home caregivers to give you respite, meds to calm him down, until something works. No doctor will give you the magic answer, sadly, bc one does not exist. Which is why memory care ALs are popping up like flowers on every corner in the country. My mom lived the last 3 years of her life in one and got great care from "her girls" as she called them.
Find a memory care AL you DO feel comfy with and get dad placed asap, that's my recommendation. Even if the money is limited and will only last a few years, at stage 6, he may not live that long. Rent is paid to them monthly and your fears of having money stolen are unfounded. Again, find a reputable facility and go from there.
The 36 Hour Day is a very good reference type book about dementia. Teepa Snow has excellent YouTube videos you can watch about how to best interact with an elder suffering from dementia. I'd install slide locks on the exterior home doors to keep him inside and not wandering. Dad can get lost or hurt outside and that's a bad thing.
I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Wishing you the best of luck with a difficult situation. Make sure to remember that dad's life is not the ONLY one that matters here. If you die from stress, God forbid, what happens to dad then? He automatically goes into managed care.