reframe my thinking?

jen ht

Hello community,

I think I need a reframe for my thinking.

Taking some time away from visiting my dad due to his anxiety and agitation. He has been in MC here closer to me for about a month. I've stayed away for a week and half previously and am currently in the midst of another week away.

I keep thinking that he is struggling and I can't believe that I am leaving him alone to navigate this. Ugh. I am guessing that you all with way more experience than me might suggest that I am not thinking about this the right way. Help me with a reframe?

I guess it probably doesn't help that I find myself wishing I had chosen a MC with activities for residents on various places of their journey. I didn't know what I didn't know when I was choosing. I don't think he can go through another change, so here we are… trying to make the best of it. It's been suggested to me that there is no "perfect MC". I just can't shake the feeling that this one wasn't ready for a resident like dad and that now he is struggling more than he would've if he had options to engage with that capture his interests. Maybe not - maybe he would still be perseverating and begging to go home.

Am I supposed to let it sink in that I can't help? Is "ignoring stress and anxiety" really a best practice?

Is the idea that he is fine other than when he sees me? I think it is generational most likely, but he has always outwardly shown that all is well and that he is okay and doesn't need help. So I worry that this "front" he puts up is keeping him from getting the help he needs. Ugh.

I guess I feel like he is scared and I am abandoning him.

I welcome your reframes for my thinking.

I don't think I can stay away for another week. I know that living on his own is not an option. I know that I can't provide the care he needs. So, I know MC is the right choice. I've just gotta get my head right about it and convince myself of what's helpful and why. Staying away? Trying a short visit with his dog - usually soothing for him?

Thanks for listening and thanks in advance for sharing your knowledge with me. There is so much I don't know and don't understand. There are many places for learning. I read old posts here lots and lots to soak in your hard earned wisdom.

grateful,

jen

Daisie

My psych told me that when I think I'm being cruel, etc., I'm also thinking in terms of how my LO USED to be, not how she is now or the situation. Several of my friends, including one who's an RN, said I'm not being cruel by wanting my LO in MC and not having to spend all day every day with her. It's for her own safety and well-being. She has no social interactions when she's with me, relies on me too much for that, and it causes a lot of undue friction. She needs more engagement with others, which she's not getting. And so do I. I don't want to end up in this situation myself in the next 30 years!

So, basically, what I'm saying is that you're doing what's right for both you and your LO. It may not seem right based on how things USED to be, but it is now. It also becomes a matter of survival. You have to be there and be strong for your LO, and that may mean keeping some distance so you get the rest and space you need to be emotionally stronger for both of you.

I don't know if that's necessarily helpful or enlightening, considering I'm struggling with this myself, but intellectually, it makes sense (just not emotionally yet LOL).

You also can't try to figure out what your dad is thinking. That's moot at this point because of the dementia. It's like we try to think of things from the mindset of a normally functioning mind and that doesn't work. It only frustrates the matter.

You do the best you can. You are enough!

M1

Jen, I don't think a MC really exists that has different activities tiered by skill level for their residents. i think there's too much turnover for that and not enough staffing. I do know that some facilities that have both assisted living and MC will allow some MC residents to attend activities on the AL side, but generally they have to be accompanied. You could try hiring a companion for your dad, but that gets expensive, too-- they generally charge $35 an hour and up..

My partner is a farmer and a builder and a gardener and very much a loner and an introvert. Living in a group setting has been very difficult for her, and she is not interested in socializing or group activities, period. Hates eating meals in a common dining room. That has been by far the hardest part for her. Now she's pretty much bedbound and on hospice, so it's not as much of an issue any more.

it's still very early days for you. I think you're right that this is likely harder on you than it is on him. How does the staff say he's doing?

jen ht

https://alzconnected.org/discussion/comment/217302#Comment_217302

Staff at both MCs have insisted that he's doing great and that all is well… this sort of thing. But a couple of brave souls at the 1st place quietly let me know that he was struggling. That has caused me to question when they insist that "all is well". I'm like, is it? 🤔 Plus the NP here has called me about his agitation and pacing.

I guess I don't know who I can trust.

Maybe they are trying to say that there's nothing I can do to make it better.

Leaving him on his own while scared and anxious just feels so ick. And hearing people say "oh he's great" really makes me wonder. I am so conflicted on the best next steps.

jen ht

https://alzconnected.org/discussion/comment/217298#Comment_217298

Thank you for the solidarity and reassurance. Your words are helpful here. Thanks so much. I think you are right that I am trying to figure out what he is thinking and how he is feeling. Good point about that.

Take care.

Quilting brings calm

please give him several months to adjust. One month isn’t enough time. I read somewhere that six months is about the average adjustment time when a person moves into a group setting. It’s going to take you time to adjust to his new reality too

jen ht

https://alzconnected.org/discussion/comment/217307#Comment_217307

I do hear you and I am trying. Not very successfully. I feel like I need to find a new way of thinking. I will keep working on it. There is so much I don't understand about the hows and whys. Thank you for encouraging me to be patient.

mabelgirl

1. Just some thoughts on your post, not knowledge ..
2. You have not left him alone or abandoned him. You have given him a safe place to have his needs met while maintaing your self. You matter too.
3. He is not navigating anything. This is harsh, but I do believe it’s true. To navigate one would need a disease free brain. He is being directed and walked through his journey by staff, hopefully with care and compassion.
4. It is not his location that he hates, it’s where he is at inside his brain. He longs for old memories and to be able to make sense of the world around with all these missing pieces of information.
5. Accept the positive, I.e. “outwardly shown that all is well ”.

Prayers for peace.

jen ht

https://alzconnected.org/discussion/comment/217342#Comment_217342

I needed each of these mabelgirl. Greatly appreciative. I've just been sitting with each of these today. I think I am to the part of the relationship where I'm realizing that this a little like not letting youngsters eat sugar and candy for every meal. They don't really fully understand what they need. They just know what they want. (not saying to treat him like a kid, just applying different life lessons across ages here) He doesn't know what type of care and protection he needs. He just knows that he wants to go home.

I think I am slowly coming to more and more learnings and deeper understanding.

Thank you

H1235

If you notice under each stage it gives a rough age equivalent.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

snicholson

Hi Jen ht,

Although I am not one of the members with a lot of wisdom or experience to offer, I just wanted to comment and let you know that you are not alone in the struggle of still trying to figure out what the "right" or "wrong" things are in these situations. I believe that our rational minds want so badly to make sense of what is happening to our loved ones, that it is just so difficult to accept that there isn't a good rational answer to so many of the struggles when dealing with dementia. Although the situation with my father is different than yours, I still frequently wonder if I am checking in enough, or if he actually is doing as well as the staff claim. I had to shut my father's phone off, prior to taking him to AL, (to keep toxic people away) and it has been difficult to not just be able to text him to ask if he needs anything, just say hi, etc. Rationally, I know that if there were problems the staff would call me, or he would use a phone there to call me. I feel that sometimes a bigger challenge we face as caregivers is that we don't respect our own adjustment period and all of the emotional shifts that can come with it. We just expect ourselves to adapt quickly and "get on with things." I personally thought that I would only feel relief once my dad was in AL, and that I would be happy to finally be able to breathe and focus on some of my own needs. However, I am noticing that there has been a different kind of anxiety now. I wonder if I need to hurry and get him a new phone number so he can talk to people outside of the AL, are people visiting, is he sad or feel abandoned, etc. I have to stop myself from spiraling by admitting that these fears are about me and my adjustment to the new situation. I don't know if it will give you any peace of mind or not, but while my father was in the hospital (during his "acute fit" about not wanting to go to AL) every time a new provider would call with questions, etc they all told me that dad was very agitated and unhappy, but that he was doing fine at the same time. Obviously, I don't know your father, but is there a chance that he is similar to my dad in that he was very angry and agitated at me (because in his eyes I am the problem) but was still able to do well and interact with others appropriately? Knowing that I was the main source of dad's anger was frustrating, but also helped me to know he wasn't being hateful towards anyone else, if that makes sense. I know it is easier said than done, as I have to do a lot of self-talk each day, but try to recognize where YOU are at with things and what it is that YOU NEED. Your dad is safe and being cared for, so it may be you who needs the compassion and self-love right now. Be kind to yourself, you are doing the right things and you deserve to find some peace (even if in tiny doses right now). Not sure if any of that was helpful, but wanted to relate and tell you some of the things I believe for you and have to tell myself often! Take Care!

Anonymousjpl123

@jen ht i don’t know if this will be helpful to add, but I do know that helping my mom on this journey has been one of the hardest things I’ve ever done. I think you have to be gentle with yourself and your dad.

Both of you will get through this.

He may need more time to adjust, and it may be better for him to navigate it on his own. I spent a lot of time with my mom when she moved to MC, and while it felt good to me I’m not sure it was great for her. Then I stepped back. It was a back and forth like that for months. And she now has adjusted (although I’m having tons of problems with her place).

The truth is, there is no perfect situation for our loved ones with dementia. A wise person here said to me “all we want is for our loved ones to be safe, cared for, and happy, and sometimes we have to settle for safe and cared for.” That helped me. Give him time, stay in very close touch with the staff, and if something seems at all off, visit. It will be ok.

jen ht

Thanks so much @snicholson and @Anonymousjpl123 and @H1235

I have read and re-read what you've generously shared with me here. Thank you so much. I apologize for my delayed response. Mom also is struggling and school is starting soon (I'm a teacher) - so, I've read and thought and pondered but not replied. I am sending you much love and appreciation. May we be well. 💜 ~jht

jen ht

Hi @Merla

It is. You're right. You've found a wonderful place here to read up and find support.

Wishing you well on your search. Probably the best pieces of advice I've gotten since starting my search in May are the following… There's no perfect memory care. It is incredibly difficult for you and for your LO. There's a lot to learn about this journey and while there are common themes, it truly is different for everyone. As you make decisions keep in mind your LO's safety and your sanity. Pick a place close to your home if possible to ease some of the strains of this process.

What I do like about dad's community - the people. They do genuinely care. They are kind and helpful and understanding. They know that I am learning and hurting too. They try to support me through this period. They affirm my love for my dad and my wishes to help him get what he needs. All of that said, though, they have other residents to care for too, of course. Adjustments are slow and take time. I do note that they have recently added some more active options. On the app where they add photos of residents and their activities I was able to see dad playing ping pong. He LOVES ping pong. This was a huge celebration for me to see. Previously many of the activities were seated. Most of the residents there are women, so there's a lot of sitting together in the common space and chatting. Dad's anxiety is soooo high. He needs something more active to really pull his attention up and out of perseveration. He was still mowing and mulching at his home when he was living independently, so MC has likely felt like slamming on the brakes for him.

His previous community in another state had lots of singing and painting and walking. He mentions missing those things regularly. I do think his new community is trying to add things like this.

Best wishes, Merla. You're so right. It is hard. It's hard in many different ways for different people. We do the best we can and we carry on. ~jht

Nancy Anne

I have just read this thread and feel so validated by how I am feeling. We are all going through the same thing. I have been so conflicted about visiting. I have learned that it's okay to miss a few days for my own well-being. It has been so gut wrenching watching the man you love and lived with for 54 years dying slowly. The future does not look good, and I hope I have the strength to be there for him. It's hard for me to talk to our children about the decline and sometimes I don't want to call them, but I do need their support. It's difficult for them to visit due to distance and I am sure they are suffering too.

Thanks for listening.

fmb

https://alzconnected.org/discussion/comment/223324#Comment_223324

Call your children and talk to them about what their father and you are experiencing. They need to know, and you need the support. If they love you and their father, they will want to know.

My DH lives in an assisted living facility with hospice care and is dying from advanced ALZ and congestive heart failure. His younger daughter visits every Sunday and is very grateful for all the caregiving I have done and continue to do. Her support means a lot to me. DH's older daughter has been estranged from him for the past six years. She resents me for taking 'her' inheritance. After a great deal of prayer, I am going to call her tomorrow (her birthday), first to wish her a Happy Birthday and then to invite her to come visit her father this Sunday. I had been estranged from my father for many years when he died from ALZ in 2019. I lived 1000 miles away, and due to my caregiving responsibilities with my DH, I was unable to fly out to see him before he died. I want to extend to her the grace of the opportunity to reconcile that I never had. I have no idea how she will receive the invitation, but am praying for a good outcome.

Nancy Anne

I hope your husbands daughter was able to come. If not it was her choice. God Bless you during this difficult time.

Lyn89

https://alzconnected.org/discussion/comment/217342#Comment_217342

I needed this as well and am printing out a variation to keep on my desk. Thank you for the insight. <3