Father with dementia, just moved into my home

Tami1504

My 87 yo widowed father has alz(diagnoised 8 years ago) and vd. He fell asleep after a dr appt in awaiting room and was wandering confused with delirium in the facility after he woke up. He was seen in the ER and admitted for mental status change. He has had a couple of other incidents similar but not in the community-found during the night by neighbors wandering down the street in his underwear not knowing where he lived. I live 2000 miles away and have been paying his bills, managing his finances, visiting every 2 months (or more), taking care of household issues and coordinating healthcare, and setting up his medication. He has been very suspectable to on-line and phone scams. I have had to change his credit cards 11 times in the last 2 year due to suspected/real fraud. Countless other issues (buying windows he did not need), getting a second car insurance policy and not canceling the first, canceling his medicare insurance-there is a long list …. Anyway, I flew to his state and met him in the hospital, he was inpatient for 4 days. 3 doctors told me and him that he needs 24/7 monitoring and can no longer drive due to progressing dementia (previously his neurologist told him he could drive during the day to places he was familiar with)- He agreed to come back to my house at discharge. Now six weeks later he does not remember the hospitalization or agreeing to come to my house. He is very angry with me stating that I lied to him and demanding that I take him home that he can live on his own. He will refuse to leave his room, eat, take his meds or bath for a couple of days-then I can coax him to get up and interact with family. I am getting his health care appointments changed to providers local to me but this is taking time. He can have very lucid moments; however, he has forgotten large chunks of recent information, and struggles using a phone or computer. He has recently been trying to search on how to cancel a POA-thinking that if he does then he can go back to his house. He can be totally independent with his ADLs except remembering to take his meds. He has always been pretty mild in his temperament, but I have seen and heard anger and aggression directed towards myself and my spouse that I didn't know existed in him. In-home services in his own home are very difficult to coordinate from a distance - found this out when he/we were caring for my mom. My spouse and I have spent thousands of dollars and hours of time in an effort to keep him and before she died my mom in their home. I believe he either needs to live with me or in a senior living center close to me that I can no longer do this long distance. I am joining this for my own mental health as well as to get understanding on how others are traveling this journey. My family (adult kids and spouse) want me to move him to an assisted living facility as they are concerned about his aggression towards me. He will not discuss it and only states I need to go home. I do have a mental health appt scheduled for him and different one for myself-I think he is depressed and he agreed at the time to the appointment. he will be seeing local neurologist but that is a couple of months out, he has a heart condition and needs cataract surgery which I am also coordinating.

terei

Start touring local AL facilities that also have memory care so he can be transferred there when the time comes. Read the many posts here of how to move your LO to a facility…forget about him agreeing to it. Work with the facility and arrange the move with the help of your family and take him there with any ‘explanation’ to him that you feel is appropriate.

I told my mother that she was going to be doing some PT under doctor’s orders til ‘she was better’. Others have told the PWD that you have to have work done to your home and he has to stay at there while the work or repairs are finished.

Many times the caregiver (in this case, you) is a trigger for the PWD ire and/or aggression. Certain meds can help. Being in an environment where he socializing and in a structured setting can also help. Good luck.

SusanB-dil

Hi Tami - welcome to 'here', but sorry for the reason.

terei is correct. Totally agreeing on all counts. Dad can no longer make any of these decisions. He has anosognosia, which is not denial, but rather, the total inability to know that anything is wrong and everybody else is just there to aggravate him. Do get a PCP, and hopefully a neurologist onto your team. A neurologist appointment can take months, but is worth it. And hopefully a PCP that understands the dementia experience. It sounds like a meds change may be in order to tap down that aggression. There are some that start with low-dose, and without being zombied.

Also - if at any time someone doesn't feel safe with dad, do call 911, explain the situation and diagnosis, and have him brought to geri-psych. They are more able to understand and get the meds needed.

Do disappear the phone, or at the very least, get a child-phone, that you can program to only send and receive calls that you program. Our LO's have been known to lose a lot to scammers.

The book 'The 36-Hour Day' is helpful, just utilize the chapters you need currently. Also Teepa Snow and Tam Cummings videos.

This is also useful: DBAT: https://us.v-cdn.net/6037576/uploads/B0XGDF5TALMA/dbat-287-29-281-29.pdf

Another thought on the cataract surgery - will he be able to leave bandages and his eyes alone, and adhere to the strict regimen of the eye-drops before and after the surgery? Unfortunately, and sadly, some of our LO's on the posts have had to decide to forego the surgery, due to these issues.

Sorry you are dealing with 'this'.

April23

Hello and welcome to the forum no one wants to be a part of. Glad you are here.

Let me start by saying that if you haven’t already, you should put the thought of your dad going back home or living alone out of your mind. That is no longer an option no matter how mad he gets, no matter how much he begs or pleads.

You are correct that he must be near you. It is simply not possible to provide the care he needs and manage his affairs from far away. So you have already taken that huge first step successfully.

No matter how lucid he seems at times, 24/7 supervision is required. He will never acknowledge his condition or think there is anything wrong with him, not even when the new neurologist says so. He should not be driving, cooking, managing medication, nor should he have a phone or access to the Internet. You’ve already gotten a taste of the damage that can be done. Wandering or exit seeking can also be a concern.

There is a book called The 36 Hour Day that is helpful for caregivers. Anger and aggression is a real possibility and medication may be necessary, the neurologist can help with this.

A daughter caring for a father can be challenging. Hygiene and toileting will become issues if they aren’t already. Sleep deprivation inevitably affects the caregiver. PWD have zero safety awareness and falls are common. For example if he spills something on the floor, he will walk right over it unaware he needs to clean it up. Executive function and decision making abilities are gone. Keeping the PWD safe is the goal and their personal happiness becomes secondary. Only you can answer whether caring for him yourself will be possible as the disease progresses.

H1235

Welcome. I agree with terei. Keep in mind facilities can have a waiting list to get in. If you really feel strongly about caring for him in your home, you should keep in mind he is going to need constant supervision (like a toddler). This is not going to work well if you plan to work from home. You’re asking a lot of your spouse. If he lives with you, you and your spouse end up always being the bad guys. Telling him he can’t do this or that, reminding him to use his cane, getting him to take medication and encouraging healthy habits. It’s not uncommon for the person with dementia to become angry and resentful of their caregivers. Your relationship may resemble caregivers and patient vs father and daughter. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. Trying to reason with him or get him to understand the need for Al is only going to lead to an argument, since he probably feels he would be perfectly fine to live in his own home alone. You need to do what is best for him even if he doesn’t like it. It’s hard! I will attach a staging tool. Notice it gives a rough age equivalence at each stage. Consider this when making decisions. You don’t need to discuss decisions with him and sometimes it may be best if you use a fib. For example constantly try to convince him he can no loner drive is going to cause agitation. I will attach a few other links that may be helpful.

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

you

Tami1504

Thanks I have him on multiple waiting lists at assisted living centers close to me. Currently he is angry that I won't help him find someone to live with him in Florida in exchange for them getting his house after he dies. That is his current plan to move back home, unless he can find someone to marry and live with him in Florida.

atl86

All of your experience sounds very familiar to me. Plan his future living situation based on his worst day. I agree that his phone needs to go missing and ensure he doesn't have access to the internet. It's for his own safety and financial wellbeing. Change his address to yours so that all his bills come to you. If you don't already have access to all of his financial accounts, you need to get it. It will take time to deal with every credit card company, bank, brokerage, etc., so start now. It may feel like a full time job for a while. I was able to set up online access to a lot of my loved one's accounts because my LO liked to do everything by mail vs electronically. And, at some point down the road you'll need make decisions about his house in Florida. I have found this discussion board to be a wonderful resource with each new situation i encounter. No one wants to be on this journey and I'm so sorry you've become a fellow traveler.