Dad thinks he has done something wrong because I’m moving him to assisted living

bjohnsen3869

My dad has had ALZ/dementia for 3 years. He is in the late-mid stage. He also has aphasia which makes communication extremely difficult. Physically, he is still in good shape other than balance and ALZ shuffle. Up until 3 weeks ago he was living down the street in his house with his girlfriend who is mentally and physically capable. She was constantly calling me complaining about him and expected me to be over most of the day. I have a 10 and 13 year old, so I am unable to entertain my dad all day. I’ve tried home health, which she said wasn’t enough, and offered to move them both to independent living where he would have more to do, and she refused. When she texted me 3 weeks ago saying she could not do this anymore, I went over and packed him some stuff and brought him to live with me. He loves being with me and keeps telling me how I’m his girl and how much he loves me. Always apologizing to me for doing things for him. He keeps saying, “I’ll do better.” It kills me because he thinks he is doing something wrong.
I’ve recently put a deposit on an assisted living facility down the street from me. I’ve been taking him(reluctantly)to activities there daily and I’ve told him we are getting an apartment there but he thinks I just want to get rid of him. And, to be honest, I do. I want my life back. The constant engagement he needs every waking minute is too much for me to sustain, especially with my young kids. The guilt I am feeling is incomprehensible. I am constantly questioning myself. I am the only child so this is all on me, I have no one to bounce ideas or confirm my choices. The girlfriend is mad because I made this decision without her but I’ve tried involving her in so many things and have found that she rejects everything but wants to complain to me 24/7.
My dad is still aware of stuff sometimes but other times is out. How do I tell him that he needs to move to this ALF? How do I make him believe that it’s nothing he has done wrong? How do I make myself feel like I am doing the right thing? Should I tell him that it is temporary? With his aphasia, he can’t make a lot of sense when he talks which makes me think that he isn’t aware……..but I know he is. He keeps asking me when we are going to that place……..I finally told him that we would try for Monday and he said ok, that’s fine, but he got choked up and eyes watering(I’ve NEVER seen him cry).
I’ve taken care of my mother, half brother, and grandfather on their death beds……all dying of cancer. This disease is so much worse. It takes your dignity and humiliates you on a daily basis.

M1

Welcome to the forum. Heartbreaking indeed, but you are doing the right thing. You can hope he will adjust, but (personal experience) it may take a long time, and you have to steel yourself that knowing you are planning for his care in ways that he no longer can. You certainly can tell him it's temporary, that has worked somewhat with my partner, who has very little sense of time. But something to think about: is he still in touch with this "girlfriend"? She could easily sabotage you it seems, and you may have to make a decision about whether she is allowed to see/call him in AL. Where is she going to live, if the house was his? Are you going to keep it or sell it? Big decisions to make there. I assume you have power of attorney? Wishing you well.

bjohnsen3869

Thank you for your response. I’m worried about the sabotage from the girlfriend as well. They’ve lived together for 18 years. My didn’t marry her intentionally. My mom passed away in 2002 and the loss of her caused him to latch to the first girl he encountered. She has been good to him all these years and I appreciate that, but she is a negative person generally so she tends to bitch about everything. Yes, I’m the POA and the house is in my name and his. I told her she could live in the house as long as she wanted and I would pay all the bills or if she wants to buy something else, I would buy for her and put in her name and be done. The girlfriend and I have always got along until my dad started the decline. She does not like it when she isn’t in control. I do understand how hard this must be for her too. I think she needs a “bad guy” in order for her to be able to get through this. Her guilt would never allow her to make a decision based on what’s best for him. I’ve decided I can be the villian. She will hate me for the rest of her life and tell stories of how I took my dad from her and that’s ok. It’s hard for me to have a person hate me but I also realize this is best for my dad.

she definitely wants to visit him there. I thought about setting some guidelines or script for her to stick by and if she can’t do that then I will not allow her to come. The bottom line is that she doesn’t want to or able to take care of him so I don’t think she will want to just intensionally cause him to be unhappy.

bjohnsen3869

I feel so alone.

Marta

You are no longer alone. You now have all these board members to support you and tell you you’re doing the right thing.

Quilting brings calm

I would tell him that you know it’s hard on him to be around tweens all day, rather than people his own age.

Rehardless of what you tell him, it’s going to take a while ( as in several months) for him to adjust. He’s going to complain that he’s capable of living alone and that everyone there is ‘old’ etc. Just listen for a while and then leave. The goals are for him to be safe and you to be able to concentrate on your kids.

bjohnsen3869

Thank you all so much. This really does help me. I set up his room yesterday and I’ve told him we are just going to look at it today. He keeps crying and telling me he just wants to stay with me and how much he loves me. I so much want to “give in” but know in my heart that I can’t sustain this and isn’t the best for him.

Emily 123

I think you've provided a soft landing for both him and his girlfriend. If he weren't affected by the disease he would be able to take this step for himself. It will be an adjustment for him, but the best solution when taking everyone's needs into account. I hope your day went well. Hang in there.

Anonymousjpl123

It may take a while for him to adjust but I will say having him be so close may help a lot (and of course bring complications, but I have found it to be mostly helpful). We moved my mom from out of state to be closer to me and found a place 10 minutes from my house. Sometimes it sucks because she asks me to come over/needs something and I feel obligated because it is so close. But overall, it has made it possible for me to have some semblance of a life while still being very involved in her care.

Family dynamics are a bear and I hope his gf won’t be too difficult. You’re doing the right thing.

charley0419

You all do help a lot I’m knew here and new with dealing with this terrible illness can’t image anything worse then having a loved one loss it all down the road can’t wrap my head around it just read “ 36 Hour Day” great book with lots of help

think this group is going to help me a lot thank you

harshedbuzz

I'm sorry. This part is hard. The weeks leading up to dad's placement were some of the most emotionally difficult of my life.

One thing we did was to create a narrative of fiblets to present the MCF as 1) something ordered by his doctor and 2) something to benefit him and return him to "fitness" and his previous lifestyle. Both statements were untrue, but far kinder than telling him I am choosing mom's well-being over your desire to stay here. To that end, I told dad his PCP had ordered some PT to get him stronger; his gait was bad, and he'd had a couple of falls. Dad was all about taking care of dad, so he went along grudgingly. Dad was also something of a snob. He'd done some PT in rehab a couple years earlier and recalled hating the place-- I sold the MCF to him a "fancy rehab with all private rooms". This allowed us to spin this as something we did for him rather than to him.

I wonder if you could present this as a "senior hotel" where he'll be waited on instead of having to put up with the noise and chaos of family life.

HB

mommyandme (m&m)

I understand how hard and sad it is when our LO feels they are doing something wrong. My mom would apologize sometimes when I was changing her, which broke my heart. There were some other instances too. I’d assure her she’d done nothing to be sorry about and that I loved her… still so heart wrenching.

im so sorry for this journey you’re on with your dad. You’re a strong caregiver for sure! Hope you’ll keep coming back to share.

bjohnsen3869

Thank you all for your support. Your comments have been super helpful. I took him in Monday and we are going on the 2nd full day. I have ring cameras in his room, he was extremely confused this morning. Rummaging through different clothes for an hour and a half and just walk around his apartment. He looks very frustrated and at one point threw some shorts across the room in anger. I’m wondering if it was a mistake to try the assisted living portion of the facility. They have a memory care portion but I wanted him to have a separate living room and bedroom so I opted to try the assisted living first but I’m thinking he needs more one on one care. He doesn’t wonder when people are around so I thought this would work. Maybe I can hire a caregiver that can just be with him during the day one on one.

also, my dad likes to go to bed with the tv on but he can’t figure out how to turn it on or off. When he was living with me I would turn it on for him and wait until he fell asleep and then go turn it off. Does anyone know of a device that I could turn his tv on and off from my house? I’ve searched but haven’t really found a solution.

mommyandme (m&m)

I’m not sure about a device but there’s got to be one you can plug the tv into. I’d put moms tv on a timer through the remote so after a couple of hours the TV would turn off. Not sure if staff could help in AL. Maybe you could pay a staff member on the side just for tv controls at night?

I found this?

https://www.amazon.com/s?k=link+RM4+Mini+Universal+IR+Audio+Video+Remote+Control%2C+Smart+Home+Wi-Fi+Remote+Hub%2C+Compatible+with+Alexa&crid=1CPWY6GVDUSVF&sprefix=link+rm4+mini+universal+ir+audio+video+remote+control%2C+smart+home+wi-fi+remote+hub%2C+compatible+with+alexa%2Caps%2C138&ref=nb_sb_noss

Emily 123

It is frustrating. It took my mom about 6 weeks to start to recognize the daily routine, and about 3 months to seem settled, so give it time. Recall that without a short term memory everything will look new to him every time he sees it until repetiotion and routine starts to work. My mom was constantly checking up on all her clothes in her dresser at first, too.

I'm not sure if this is helpful because I don't know if you have to be near the TV, but Roku TV's have a app for your phone that mimics a remote. In theory you could use the app to turn on and off the tv, if you don't have to be near the tv for it to work. Another option might be an Amazon Show tablet--you might be able to set it up using Alexa to play movies or music every night, but of course your dad would need to have it near & it would be something totally new, so he might not take to it. An added bonus would be you can call it and the call automatically opens. I don't have one, so some investigation would be needed.