Dad is closer to me now and in a memory care community - we are new to this

jen ht

Hello dear community,

I know that I am not alone. I think hearing from others on this journey will help me cope and understand that some of what I am going through with Dad is part of the disease process. My heart is breaking. So here I am seeking camaradarie and support.

My Dad was living independently with an Alzheimer's diagnosis (getting infusion treatments) and doing well in his own home — until he wasn't doing well at all. We had to make an emergency trip from several states away and make very difficult decisions abruptly for him to move into memory care in his state to keep him safe. This was in mid-May. Then in late June (last week) we relocated him to a memory care closer to me in our home state.

He is really struggling with the transition to living in a memory care community. He wants to come home. He is pretty high functioning (mowed his own lawn, mulched, etc.) Even when I was in his home with him I couldn't stop him from making dangerous choices - related to both his finances/scammers and driving. I was worried for his safety and the safety of others. I was also worried about his finances and his future care funds.

I got him an Alexa because he really wants his phone. The phone was part of how the scammers got to him, though. Alexa has some safety options that help him be able to call people, yet be protected and safe from the unknown potential callers. While I want him to be able to communicate with friends and family, I have to be very careful. Anyway, he has only had the Alexa for about a week in the new community. He leaves me heartbreaking messages about how miserable he is. I think it is partly due to being bored and partly anxiety too. He knows something isn't quite right and it's like his brain won't let him rest. It keeps trying to figure out what's happening.

Anyway, I am an only child and he is an only child. He is also divorced. My Mom is also not well and struggling with her health.

Kind folks in the field have recommended that I get connected here with you all. I am in a dementia support group, but it only meets monthly. So I think that's why people have encouraged me to find my way here. So I can see that there is a community on this journey with me and that our journeys have similarities and differences. We are stronger together.

I look forward to being able to share with one another here.

Thanks in advance,

jen

eaglemom

I'm glad that you found us. We are here to listen and support you, and hopefully help you on this journey.

Let me mention before anything else, I too am an only. I do believe how we go about caring for a parent is somewhat different than those with siblings. We have no one to discuss the situation with, etc. On the other hand, that can be the blessing. We get to help of parent to the best of our ability, period. No one's feelings are hurt, no ones mad, etc. Its just us making the decisions.

Your father has had several big events in a very short time. The move to memory care, then the move to another state and another memory care all within a very short amount of time. Frankly, he is scared. You have done exactly what you should have done, to move him. But he will take time to adjust to the very different environment.

At the facility where he is now - do they have activities? Do you know if he is participating in the activities? Are you able to spend time with him at the facility? Meaning, pop in prior to lunch and sit with him while he's having lunch. Then you can help him to engage with others - get him to meet some people. Or show up when they are having an activity - be it exercise, etc and do it with him and again help him meet and chat with others. It's hard being the new person in a new place, and scary.

In his room, do you have things that bring him comfort, joy? A favorite soft blanket? Pictures of his family - young and older pictures. Those help the aids to engage him in dialogue. Does he read? Are there books, models? I'm sure you see where I'm going. Making his room more homey - his home. Does he have a TV? Can he use the remote?

You both are adjusting. I would also always make sure to pat his shoulder, give him a hug, kiss his cheek, show him this is fine - and that will help you also.

eagle

jen ht

Thanks so much, eagle! @eaglemom

I do hear you on the "just us" benefits. Plus I always tell people that it's what I know. I don't know any other way.

Thanks for saying that I've done what I should have done. The self doubt is incredibly heavy. So, I appreciate that.

They do have activities. They are still getting to know him though and the activities seem to be more for the residents who are seated and not as interactive. I was thinking that I could help supplement for him, but it seems that I am only reminding him that he wants to go home and that I am the one who could take him. Initially I did do the things you suggest here, which makes me feel better by the way. I sat with him during a meal and got to know the residents and their family members. We've hung out together in the patio area. I've brought his little dog in to see him and joined them during their walking club outside.

He has always been a worker with a project. That's been his "hobby" and stress reliever in life. So I feel like he is without his usual coping mechanisms. He does have a TV and he is able to use the remote. I am working on the pictures for him and hopeful that they will help. It is pretty comfy and I try to stay alert to what else I might offer to engage him. He just says over and over that he wants to go home. I try to get him to talk about what he wants to do at home when he gets there to see if there are hints within to help me offer things there. He wants to do laundry and be in his own space he says. We've (caregivers at his community and I) decided that I need to stay away for a little while so he can develop routines and relationships there.

He is fairly talkative and outgoing. I do hope that he will adjust more easily as time goes on. My wish for him is more active engaging activities and some friends to talk with in his new home. I know that will come with time. It is so hard to see him struggle. My heart hurts and so does his. It doesn't feel safe for me to take him out for a "field trip" so to speak because I'm not sure I could get him to go back. And he really does need this level of care. The scammers were cruel and he started to be so persuaded by them that he was becoming delusional.

Thank you for your reply and support and encouragement. It really does mean so very much. 💜

mabelgirl

I moved my mom from VA to FL after last straw incident at my brother’s house. There are 7 siblings but I’m the only one able to take her in. It’s just her and I and for the first couple of months things were okay, all be it she would say she preferred VA. She took a decline and then it became an almost constant complaint she likes VA better. Whether it’s accurate or not I do feel it’s not the geographic state she’s in that she doesn’t like but her mental state. The memories she has most access to occurred in VA. I tried encouraging exploring her new home, then tried reasoning 😳 and now I just say I know you do, would you like some ice cream? You’ll find something that suits your situation just remember not everything a PWD says can be taken literally . They no longer have access to all their brain.

Prayers for peace in this transition.

M1

Hi Jen and welcome. The suggestion to stay away is probably a good one, even though it's hard. You might also need to think about disconnecting the Alexa for a bit. Telephones in MC are a very mixed bag, and being able to call you may actually not be a good thing initially. The staff can let you know if there's a problem. It's very hard to make these choices, but it usually comes to that. When you do go visit, you can help him talk to friends or other family while you're there. There are 45 residents in my partners MC, and there is only one who has a telephone.

jen ht

https://alzconnected.org/discussion/comment/215009#Comment_215009

Thank you, mabelgirl @mabelgirl

I agree with what you said about their mental state and not necessarily their geographic state. I was thinking the same thing.

I love the want some ice cream approach. :)

Thank you for the prayers and wishes for peace. I am sending them right back your way. I appreciate your reponse. Thank you.

https://alzconnected.org/discussion/comment/215010#Comment_215010

Hi M1 @M1

Absolutely tracking with you about the Alexa/phone situation. In the 1st community he also wanted his phone and they recommended the Alexa instead. Now I am thinking that I could always reintroduce it later. Thank you for affirming this for me. I'm glad you replied. Take care.

eaglemom

I just had a thought. Would he be able to put together a model? Nothing with hundreds of pieces, but something he could manage. They have wonderful wooden models that my DH loves putting together. He might only "work" on it for 15 minutes or 30, but he loves sitting down and working with his hands making the model. My DH isn't a puzzle guy, but that might be something he's interested in doing.

It's good for you to let him become familiar with a routine. Like I said, you both are adjusting to several life changes and its difficult. You'll both get there, be kind to yourselves and patient with yourself.

jen ht

https://alzconnected.org/discussion/comment/215080#Comment_215080

I wondered about that too, eagle. I'm not sure. Maybe. I am trying to approach things with a "we won't know until we try" attitude. :) If you have a style or brand that you and DH like and you are willing share that with me, it would give me a starting point.

Thanks for your kind words. Yes, remembering to be patient and compassionate with myself is part of this too. Good points.

Thank you for sharing. Take care.