Parents w Dementia - In Assisted Living vs. Your Home - EDIT

For us the hospitalist or geriatrician came to us and said we couldn’t take Mum home. She required way too much care than we could provide. The staff on Seniors Psych asked to keep her there because they loved her. That’s exactly how it went. The doctor told us. That made us ready.

My MIL has dementia related to Parkinson's. She and my FIL have in-home care part-time. It isn't enough IMO--she falls daily, usually multiple times--but that is where we are right now. FIL is able-bodied and not that old (75).

After dealing with my father, I did have my husband sit down with his parents and work out a plan for if FIL dies or becomes debilitated. We will not take her in, nor will BIL -- she would go to a facility that could care for her.

I always thought I would take in my mother but after helping with my father I know for sure I could not do it.

My grandfather shielded the family from the worst of my grandmother's dementia but after he passed away, she deteriorated further. She had in home care for a while, but she was prone to wandering. Thankfully she had good neighbours who would call us if they saw her walking up the street or had been able to intercept her and get her to come in for a cup of tea. It reached a point where the calls were very frequent, and it was obvious she could no longer stay at home. When I think back now, she really should have been in aged care sooner than she was.

I don't know if my parents felt guilt for not taking her in, but my Mum has a nursing background and works in aged care, so she would have had very realistic expectations about what they could manage and the level of care my grandmother required.

My Grandma is 92, but was in her late 80s when she got into her final car wreck caused by her, no doubt. She then had a stroke and it was determined by the sister who lived closest to her (which was still not even in the same state) that she needed to go to a home. My Dad refused and because he was already in the process of moving to Missouri, had the sister and her daughter fly her to Missouri to drop her off. She also has dementia and limited mobility. The only saving grace is she's super tiny (always has been) and can be helped easier than if she was a larger person.

Needless to say, my 60something year old father just retired from nursing and is staying home to take care of her. He has aged considerably from it and dragged me with him, until I finally set more firm boundaries. He refuses to put her in a home, and I have a lot of anger over it because he thinks it'd kill her to go into a home, but I doubt she's very happy now.

I have worked in nursing homes and visited others that my Dad was working at and I understand people's hesitancy. I wish our country were more caring for our elderly, but I'd still go to a home than have my kids take care of me.

My mother was managing at home but I could see she was going to need someone with her later in the day probably in the next few months. Then she fell and broke her hip. Her Alzheimer's disease became much worse. I hired caregivers for her for when she came home from rehab but it did not work. MOther was afraid of 'strangers in her house' and she ran away, repeatedly, leaving her walker behind and crossing the road usually barefoot. She also saw my husband, her best buddy, as a stranger at times, particularly late in the day. So, she had to move into Assisted LIving memory care where there were people trained to deal with her situation and where she could not get out in the street.

I rarely tell this story, because it is difficult.

My dh's stepdad's mom was 95,still living on her own with family checking on her daily and making sure she was eating. She had not been diagnosed with dementia- part of this was because, well, have you ever tried to get a 95 year old Italian woman to do something she doesnt want to do? She did not want to go to the Dr. She did not want to leave her home.
She had lived with one of her other children for a few weeks (i cant remember why- i think a health issue), but as soon as she was able, she wanted to go back home.

The family knew that her memory had declined, but she was 95 and able to live on her own and function. They did not feel that her memory issues rose to the level of dementia.

A few years ago, we had an extreme cold snap- extreme even for where we live. It lasted for over a week.

One night during this cold snap, her daughter had come over to take care of anything she needed and got her mom ready for bed. When the daughter left, Nona was going to bed.
Around 2am, Nona went and knocked on her neighbor's door and tried to give him cookies for the children (i dont think he had young kids). The neighbor took her back home and waited until she was back inside and had locked the door. He did not call her daughter (I am not blaming the neighbor for any of this. I imagine he would have talked to her the next day and since he got her home, felt that she was safe).

The next morning, she was found dead near the local elementary school. My thought was that she may have thought she needed to go pick up her children from school, as that was the school they had attended. She died of hypothermia/exposure. (The news media reportes so many untrue things about her death that it caused a lot more pain for the family)

So, if you know that your family member has dementia, please be sure to get them into a locked facility once they progress past the point where someone can adequately supervise them 24 hours a day.

littlemama so so sorry...

A neighbour’s across our lanes Mom spoke very little English. One of my neighbours found her wondering down the middle of our street one day, returned her home and let her adult son that lived with her know what happened. Another day she was wandering the lane not knowing where to go and I returned her home and advised her Son. He had to turn off the breaker to the stove before going to work so she wouldn’t turn it on. I suggested he try to put a camera motion detector on the door she goes out. Eventually he placed her in a care hom.

There are no circumstances under which I’d have my parents or in-laws with dementia live with us. It requires special, professional care IMO.

For me, my dad moved in with me when he separated from his wife in February 2017. He just needed a place to stay for a few days and that turned into five years. His dementia started showing up more that summer when he would get in his car to go somewhere familiar and be gone all day because he couldn't find his way back. That's when my brother took the car back (it was his, not my dad's) and I started taking my dad to church, the store and all of his appointments.

We got a part time caregiver for him in July 2017 because I'm a teacher and had to go back to work. She basically cooked for him, cleaned up after him, took him places and just be his friend. That worked for several years. Christmas 2021 my dad got physically ill and never was the same. He was in and out of the hospital for various reasons. He was combative and argumentative and wanted to go home. He would leave the house and once he hitch-hiked to Walmart to buy a deck of cards. Usually though he was somewhere in the neighborhood. I bought an indoor lock with a key to keep him inside and that made him very mad. He would misunderstand something that was being said (in another room that did not even concern him) and throw a fit. He would "chase" his care giver out the back door when it was time for her to go home. He accused me of stealing his stuff (things out of the refrigerator, money from his wallet, his shoes, anything.) I called 911 many times because he would fall and he was too heavy and his body hurt when I tried to help him up. They were so so nice about it.

It was very hard. He turned into almost a 24 hour job. There are some things that I feel guilty about but I did my best. I did not want him to go into a facility because he hated the hospital setting so much. My brother and I discussed it often but we were always able to make do the way things were.

His part time caregiver had quickly become a family member and she was so much help. She could get him to do things that I couldn't. For example, one even he wanted a taxi to come get him and take him home so he walked out the front door. It was cold but he wouldn't come back in. He kept insisting I call a taxi. I got my brother on the phone and he couldn't talk him into coming back inside. So the caregiver came back over and told him she would take him home in the morning. He came inside and let her put him to bed. We learned as time went on how to handle things like that. Sometimes my brother could do it and sometimes the caregiver could and sometimes I could. It depended on who he thought I was at the time.

All of this makes me so sad!

We got him on hospice so he got care that way and it helped the caregiver out so much. By now she was full time. We tried to get another caregiver but nothing ever worked out.

It was decided that he needed a hospital bed so they set that up in the living room. Once he got in that bed, he never got out. He passed away 3 weeks later.

Having my dad in my home was hard, but it was best for my family. I certainly understand why it wouldn't work for others.

Thank you, everyone, for the kind words. Nona was still gardening the year before she passed away. She always put in a huge vegetable garden every year and would get PISSED if anyone tried to offer to do things for her. She was a character.

I am sorry you are dealing with this. It is a really hard decision to come to. There are some really helpful stories and suggestions on here. I had to stop reading them, they made me too emotional. My mom died in July 2020 and I still miss her everyday. 

My one piece of advice, whatever you choose to do, do not feel guilty. Someone suggesting you care for an elderly relative with dementia in your home does not mean you have to choose that path. I had a lot of reasons why we could not care for my mom in our home:
We don't have a bedroom or washroom with a bathtub or shower on the main floor of our house.
We have flights of stairs she could not navigate.
I work shift work and she could not be left alone. 
She needed medical care that was beyond me.
I needed her to be somewhere safe and I did not feel like that was with me. I had so much anxiety worried about her wandering away and getting lost or falling down the stairs. 

I loved my mom and wanted her to be safe and cared for and we were able to find that in a nursing home. We were lucky to find a smaller facility and the staff really seemed to care for the residents. She was happy there and always clean, dressed, well, cared for and smiling when we came to visit. 
We probably waited too long to move her into a nursing home from her seniors lodge but we just weren't ready until she needed to be there. 

Honestly, I get it. We all want to take care of our family members and we obviously will do better than any stranger, right? From the experience with my Grandma living with my Dad, there is no doubt in my mind that BOTH of them would be better off if she were put in a home. The experience we have with assisted living facilities already gives us an advantage. As long as the facility isn't just a dumping ground for your family, regular check ins do wonders for the care people receive. There are so many things that you can't know will happen. Nobody knew my Grandma would take a wrong turn out of the bathroom one night and land at the bottom of the 6-7 steps and have her ribs cracked, her elbow broken, and puncture her lung.

She'd get better and then get worse. He tells me all the time to just put him in a home if something happens. I have a feeling that will be sooner rather than later with the years coming off his life taking care of her because he's so damn stubborn.

I’m an only child, don’t have any help, and when my father developed severe dementia and needed round the clock care I selected a nursing home for him. Home health and hospice doesn’t even come close to meeting the demand when a person can’t sit up without falling out of bed, feed themselves, or go to the bathroom - we got to that point within six weeks of his dementia diagnosis.

It was hard. He was mad. There was nothing else I could do. Only child, full time job, child of my own to care for too - there was NO way I could do it.

When I knew I couldn’t manage it is when I made the decision. I couldn’t make him safe enough. He kept falling and the paramedics kept coming and it was too much. He was going to break a hip or, on his unpredictably mobile days, set his apartment on fire trying to cook or wander out into the street. I didn’t have a choice.

I have zero guilt. I made that decision out of care and love and would do it exactly the same way over again.