what is my aim? I still feel like I'm missing something

jen ht

Hello dear community,

I did take a break from visiting Dad. Mainly because it seemed to be upsetting for him. I've applied your advice (shorter visits, take someone with me, bring a treat to eat, stay in common area spaces) and it helped a lot. I do not go as often and I apply the wise advice given here when I do go.

I know keeping him safe and me sane are important aims.

What is my aim in terms of checking in on him to see that he is getting what he needs for his care?

I have a hard time knowing when there is a legitimate concern and a real need for further support for him and when it's just "the way it is" and the reality of Alzheimer's and memory care.

He is still anxious. It has improved with time and with meds. Is my aim to stay the course and hope for further improvements as he adjusts?

I can't quite wrap my head around when there is a need for a change in approach for him and when I need to keep waiting.

Is there ever a true need that is being missed - beyond more time and adjusting? He seems to be focused on needing to get work done and needing to take care of things at his house, etc. He is replaying this over and over. He is bored and it seems to be contributing to his difficulties. He is used to being outside and working as his stress reliever. Now he is in a stressful situation without his coping mechanism.

I often feel lost. Maybe I need to call the 24/7 line for guidance while also having a conversation. I just can't shake the feeling that something is off and that we're missing chances to ease the pain and upset of brain change and home change.

I've also considered companion care options to visit with him to hopefully help guide him to engage more with the community of his new home. When it's me, he gets caught in the "I've got so much to do" (elsewhere) loop.

Is this just part of what family members can go through on this journey? I can't figure out when it's how Alzheimer's is playing out for him right now and when it's something that is communicating a need that's being missed.

Take care, all.

May we be well. 💜

Quilting brings calm

I think you are trying to apply logic in regard to someone that can no longer process logic. By that I mean this: You know that you would be bored in a situation such as this, so you think he is. He may be- or he may not be. A greater level of activity might just stress him out.
Second, you feel there’s something you should be doing to fix things. There’s not. His brain isn’t fixable. We feel we need to make things right for those we care about - and it causes us actual physical discomfort until we can. That’s where you are- physical discomfort because you can’t fix this.

The staff will help you figure out if he needs something that you can do something about.

jen ht

@Quilting brings calm I probably do need to pursue better understanding of what he is going through. He reports boredom and talks about things he wants to be able to do and take care of. He reports that he is doing absolutely nothing to help engage his brain. His first community was in Florida. They had other types of activities that he participated in regularly. He reported that it was helping him. Now, granted - he still wanted to go home. But I thought it helped him pass the time more positively. They did lots of redirecting to activities like painting and singing and long walks.

Maybe it's him that has changed now? Maybe it's not that these activities aren't offered here. Ugh. I am just really struggling with this. Thank you for your words. He sits in his dark room with blinds closed and everything off the bed and folded in the corner with his fully packed bags. He organizes and reorganizes his things to go home while saying that there's nothing to do there and that they aren't helping his brain engage. He says "We've got to fight this" and "We've got to try to slow this down" I am at a loss on next steps or recommendations from there. He still seems like my "busy" Dad is in there wanting to be able to live even a little more active life.

Based on the tears that flowed from reading your last 3 sentences… I think you've found a way to say something that I needed to process. Thank you. I'll sit with them.

So it just is what is? The best practice is to let him be in his anxiety soup? Ugh… so hard to take. But I do hear you and I am trying to wrap my head around this approach.

I keep thinking - but he is safe. And then I think - but is he? is he truly safe if he is constantly going over and over what he'll do as soon as he leaves?

I know there may be no answers to this. Thank you for listening and for replying.

jen ht

@merla we've tried that too. A good idea in theory.

Maybe his brain change is further along than I think it is. Maybe that's what's making this so hard for me to understand what to do. Anosognosia for him. Denial plus the pain of witnessing a loved one in pain for me.

Anonymousjpl123

@jen ht i am not sure this will help, but i am struggling with very similar things with my mom’s transition to MC! It helped a lot to read your post.

Two things you reminded me of:

• Wisest thing anyone ever said to me aboit this, which i finally “got” but forget all the time: Your mom is on her own sacred journey. Sometimes it will be painful. Your job is to make sure she is safe, warm, and cared for, and to stay the couse so she knows she’s not alone (on whatever level that’s possible). Fixing her and staying with her on the journey are two very different things.
  
• Our loved ones may find joy, friendship, and happiness even now. But it may not be how we think. I have visited my mom A LOT over the past two years. But maybe that makes her too dependent on me. At her nee MC, I am going to see if she can find meaning and safety in the community.

I think it is very natural for you to worry about your father and his stimulation. But it may not be something you can fix right away. Make sure his medical needs are attended to, he’s eating, and he is encouraged to socialize even if he says no. Also maybe sit and watch a movie. this is so hard, everyone is different, and there is no “right way.” He is, however, very lucky to have you. And on some level im sure he knows it.

M1

Jen i don't think there are clearcut answers. it is entirely possible that seeing you triggers his anxiety. My partner spent all afternoon today taking the toilet paper off the rollers because she was convinced we were leaving the facility and should take it with us.

maybe his meds for anxiety need to be tweaked? What does the staff tell you? The nice thing about going daily now is that i have huge allies among the aides.

Daisie

I'm glad you wrote this post because it addresses something I know I will struggle with soon.

That being said, it's important to throw out logic. It's been challenging for me, but I've been trying to work hard at it. I've come to really appreciate the friends in my support circle and their diverse perspectives on this. I met one for coffee at the Bux this morning, and she said to me, "The mom you knew is gone." My friend is the kindest, most thoughtful person in the world, but I needed her bluntness. It resonated all day. It shows me I can't expect to understand what she's thinking or needs when her wires are crossed. She probably doesn't even know anymore, so why should I be able to figure it out?

It's time to just focus on making sure basic needs are being met: safety, food, water, warmth, comfort, and some social life. The latter will not look like we expect it, but I believe as long as my mom's with people and surrounded by more people than just me, it will help to some degree. A lot of this is about blind faith. There's a point where we have to let go of expectations based on our needs. It's time to let the staff at your dad's facility do their work. That's why he's there, to be taken care of by experts. I say this without malice because I need to practice what I preach!

JM27

https://alzconnected.org/discussion/70245/what-is-my-aim-i-still-feel-like-im-missing-something

Hi Jen,

I recently moved my dad from his home and his home state with me in a whole other house and state and we go thru the same thing daily. My dad isn’t aware he won’t be going back home. He has been just coming up on a month and everyday it is the when I am going back home, I have to take my vehicle to get serviced, I have to do my yard, I’m going to put my house up for sale and need to start cleaning things out.

Those are all things he said when he was in his home. Most days he slept till 12pm and sat on the couch in pajamas until 4:30ish then would decide he needed to get ready if he remembered so he could go pick something up to eat.

Every now and then he would take his yard or get lost in looking for something in the garage. Which to him he got a lot done.

I am having the same anxiety am I taking him away from something that helped him with stress. The truth is my LO was stressed in his own home just as much or even more then he is now. In his own home I think there was the he had to do everything so he was struggling to remember or in his mind he did it.

I feel either way they are going to have those stressors.

He currently doesn’t do much here and I am trying to come up with things for him to do daily.

I too talk understand how you feel if there’s something missing ect.

This is something that is really hard to deal with. I have even thought maybe I should take him back with me to clean and pack up his house to give him closure when we do sell it but I am told I will probably not be able to convince him to do that or get him back here.

So for now I reassure myself I’m doing this for his safety and whole being, although at times I question it.

You’re doing great job caring for your LO and trying to figure out what to do to help him. What I am learning is this is a very very hard thing to deal with all the way around.

I hope you will be able to find some peace with this.

M1

Maybe what you are missing is actually the person you remember? I too feel that all the time, like there's something that just doesn't click and if I could find and fix it, everything would be okay. There's this sense that "if only"…if only they got it, but they don't and never will.

JM27 I wouldn't worry too much about providing things for your dad to do. He obviously wasn't doing much in his former home, even though he thought he was. I have come to realize that my partner also thinks she's accomplishing a lot when in fact she's just vegetating. Her mind confabulates that she's been busy.

harshedbuzz

What is my aim in terms of checking in on him to see that he is getting what he needs for his care?

I have a hard time knowing when there is a legitimate concern and a real need for further support for him and when it's just "the way it is" and the reality of Alzheimer's and memory care.

He is still anxious. It has improved with time and with meds. Is my aim to stay the course and hope for further improvements as he adjusts?

It depends. Most psychoactive meds take time to become fully effective. That said, if he's been on a SSRI for 6-8 weeks with no improvement, he may need a higher dose or a different medication entirely or in addition to what he's taking now.

Most PWD do adjust to their new home by 2-3 months.

I can't quite wrap my head around when there is a need for a change in approach for him and when I need to keep waiting.

Sometimes the approach needs to be tweaked only a daily basis depending on where he is mentally and emotionally.

Is there ever a true need that is being missed - beyond more time and adjusting?

Sometimes one has to settle for clean, safe and cared for. Joy or purpose may be beyond him. It's haard to say.

He seems to be focused on needing to get work done and needing to take care of things at his house, etc. He is replaying this over and over. He is bored and it seems to be contributing to his difficulties. He is used to being outside and working as his stress reliever. Now he is in a stressful situation without his coping mechanism.

I often feel lost. Maybe I need to call the 24/7 line for guidance while also having a conversation. I just can't shake the feeling that something is off and that we're missing chances to ease the pain and upset of brain change and home change.

The phone call would be an option. Therapy or an IRL support group might help. Whenever I felt frustrated by dad's behavior, it helped me to re-read Understanding the Dementia Experience (you can find a link under Groups/New Caregivers). What you might see as boredom is probably caused as much by the apathy, inertia and poor executive function that are significant in dementia. It's really hard to overcome these losses just as you can't medicate or activity away the memory loss in dementia. It becomes a what is thing.

I've also considered companion care options to visit with him to hopefully help guide him to engage more with the community of his new home. When it's me, he gets caught in the "I've got so much to do" (elsewhere) loop.

Companion care might be useful. Many of the residents at dad's MCF had a private aide come visit to supplement the offerings of the facility. Unfortunately, given the need for safety and the gender demographics of most MCF, there isn't going to be a lot of traditionally male outdoor activities on offer. It's the nature of the beast. I'd see about hiring a male companion and see if there's something more engaging for dad.

Is this just part of what family members can go through on this journey? I can't figure out when it's how Alzheimer's is playing out for him right now and when it's something that is communicating a need that's being missed.



It's probably pretty universal given that the disease is constantly impacting one's LO in new ways.

HB

mabelgirl

The goal of a visitation is to ease your grief journey knowing that you saw your LO before they were gone. Secondary is to keep the staff on their toes by showing someone is always checking on their care of your LO as well as any supplies that may be needed. Is he clean, his surroundings , any bruises or scratches , etc .. Frankly, aside from maybe an unseen connection to our LO I don’t try to do something for my LO but just visit and pray that it registers with your LO. I’ve come to accept that anything I do for my mom, is really for me to make me feel better for her.
I do think I recognize patterns of phrases that indicate what my mom is feeling. For instance she would say “you’ve been out all day” (most of the time I had just left). I believe she was saying this because she was scared. I try not to listen or give too much weight to her words as I do the current situation. So much of what she says are contradictory that I am relying on my instinct and sleuthing to discern a need. I’m not sure how I’ll do now that she is in an ALF .

jen ht

@Anonymousjpl123 @harshedbuzz @mabelgirl @M1 @Daisie @JM27 @Quilting brings calm @Merla

Thank you for your thoughtful responses. School started here and time has gotten away from me.

The other memory care families have asked dad's community for a town hall mtg. I have no idea why, but I do hope to go. I hope this may give me connections with others who have LOs there and more insight into this community overall, too.

It will be this coming week.

With appreciation,

jen

sandwichone123

In my experience, the things I look for when I visit my loved one are his space: are items in reasonable places, does he have what he needs, are things missing (beyond reasonable laundry backups), etc. Is your loved one receiving the care they need: are they clean, is their bathroom clean, is their bed clean? There should be an activity calendar and you can spot check to see if an activity is being held as scheduled, keeping in mind that thlngs do change—planned entertainers flake, staff calls in, but in general if an activity is scheduled one should occur.