What do I do next?

ainigriV75tfarchsA19

Hi everyone. I’m new to this forum and I am finding it so so helpful. My mom was diagnosed with dementia in 2017 but was already underway. She refused to take the test to let us know if it was Alzheimer’s or not and didn’t even tell anybody. We found out in 2019 when my dad had several strokes and was hospitalized. She was acting really strange. About a month ago her doctor said she was close to going into the last stage. Then my dad died a week later. They’ve been together for almost 57 years. My mom‘s doctor said that pushed her over into the last stage for sure. Now she does things that toddlers do. She’s emptied out her entire bedroom. The only thing in there is her bed and empty dressers. She throws away her clothes regularly. She uses the toilet as the trashcan in the bathtub as a toilet. She’ll eat if you put food in front of her or if she sees food but if you don’t watch her, she’ll throw the food away and never eat. We literally have locks on every single door but hers to include closets because she throws away everything in the middle of the night while people are sleeping. She walks around, talking to herself in a whisper, and having a two-sided conversation while doing it as if she’s trying to clear things up in her mind that she’s confused about. She hallucinates quite often. She used to be a very fierce type A personality that got her way all the time. Now she’s quiet, and for the most part very docile. She refuses to take a bath or wash her hair and that’s been going on for months which can’t be very sanitary. The list could go on and on and on. Basically, I don’t know how to help her. She’s like a toddler. Is there a point where she needs to be moved to memory care? She has a caretaker at home, but we still have things in place due to the fact that people need to sleep. For example, her home has a guest stove. So we take the knobs off the stove every night because she’s tried to go down there and cook before and left the gas running. We’re trying to make things safe for her and everybody else but I’m just not sure if what we’re doing is enough. Any thoughts?

ainigriV75tfarchsA19

That’s a gas stove (whoops)

NC Girl 23

https://alzconnected.org/discussion/68375/what-do-i-do-next

I feel like I could have written this but in the reverse. My Mama had health problems but hid my Daddy’s decline (he, too, refused to take the medicine). We saw them every day and noticed some issues, but she always had an explanation. When she had a massive stroke and was brought home to Hospice at Home for 13 days (she couldn’t speak, eat, etc. but had decided long ago that she didn’t want a feeding tube), I took early retirement to care for her and Daddy. When she passed away, I could see just how bad things were and how much she had been covering for him. The grief overtook him and he had a significant stroke on Christmas Day of that same year.

After six months of PT, he did get to where he could assist in his care, but he declined rapidly. We lived right behind their house, so I was able to stay 24/7 during those first six months. At that point, he was adamant that he could stay on his own. I stayed during the day and cooked his meals but went home at night with the help of motion sensors and cameras.

My husband is my rock and took partial early retirement working only 3 days a week to help with Daddy’s personal needs that I couldn’t or didn’t want to do (showering, etc,). It soon became clear that I couldn’t do it on my own, and my husband retired fully to help care for him. He was able to go to the bathroom with a walker but soon had to wear disposables because of accidents. It was a huge ordeal to get him to wear them and then to change them. He tried to flush them and sometimes would go “commando” under his pants, causing irritation that he would allow us to treat. We had to turn off the stove and microwave after he turned on the stove and melted plastic containers in the burners, so I had to go home to cook and bring up food.

His behavior was totally out of character and erratic. He became verbally abusive and threatening. Some days he would know us and some days we were just the people who took care of him.

He passed away March 4 of last year, and the time since has been a roller coaster of emotions. We still can’t believe how quickly it happened, and I still can’t reconcile the feelings for the two entirely different men that I knew—the Daddy I had loved for 60+ years and the man I took care of but didn’t really know. I pray we are all able to find peace and comfort from this awful disease. You can only do the best you can and love them through the awfulness that they don’t understand or deserve. Take care my friend.

SusanB-dil

Hi ainigriV75tfarchsA19 - welcome to 'here', but sorry for the reason. Sorry for the loss of your dad.

So is mom at home with a full-time caregiver? as she cannot be alone at this point. Who does have POA? and HIPPA accesses/medical proxy? If you are 'wondering' if she should be in MC, then you are probably correct at this point. They can give her the 24/7 care.

What you are describing is not unusual. Our LO's can do some rather funky things when reasoning is gone.

You can check out the resources link (on the right, on this page: https://alzconnected.org/discussion/64696/dementia-resources/) and there is also the 24/7 Helpline 800-272-3900, ask for a care consultant.

Quilting brings calm

Yes It’s time. Unless you all have an ironclad schedule of caregivers and backups. Meaning someone awake 24/7 in the apartment with her. Keep reading posts here and you can get an idea of how difficult it is to keep someone at home at this stage unless you have a group of caregivers.

You commented that you don’t know how to help her. That’s another indication that it’s time for an experienced staff, who gets to go home when their shift is over. Many dementia patients feel more secure and content in a controlled environment with other residents similar to them. It’s just less stressful for them

Welcome to the forum

ainigriV75tfarchsA19

https://alzconnected.org/discussion/comment/200440#Comment_200440

You have certainly dealt with your share of trials. I know it’s a labor of love but it takes a toll physically and emotionally. I too live beside my parents but can’t retire yet. It is strange feeling like a parent to your parent. Thanks for sharing. Not feeling alone in this journey is very comforting. I have my husband and our adult children. Their support has been great. Still, being able to talk with someone who is or has dealt with similar situations is cathartic. Thank you