What does progress look like?
Decisions made. Forms completed. Appointments scheduled. Progress.
Progress also looks like arguments and people storming out the door. Silent treatments and tears. Understanding and misunderstanding.
Believe me when I tell you, there is no easy way to do this.
I finally finished the “Tour of Memory Care Facilities” (zero stars, do NOT recommend) and made a decision. I looked at brand new ones, old ones, red ones, blue ones – you name it, I looked at it. The one I finally chose wasn’t the newest, the sparkliest, the shiniest. It was the one that felt as though I was walking into my best friend’s house. It is soft and comfortable – and it feels like home.
And that’s the feeling I want for M.
I had hoped to sit down with my sons last weekend to talk about the different properties I had seen, go over all the costs and make a decision. That did NOT happen. One son was adamantly opposed to the whole idea, felt as though I was going to warehouse his dad in some asylum and wash my hands of him. The other son knows this move needs to happen, but doesn’t want to be the “go between” between his brother and me, so please leave him out of it.
And I get it. I really do.
What neither of them understand is how lonely and soul-draining this process is. In a normal world (hahahahaha), I would be doing this – going through this horrible business – with my partner. With M. Instead of doing it for M. This is the hardest thing I’ve EVER done.
I never wanted to be this “strong.” I never wanted to HAVE to be this strong. It’s not that I expect life to be easy, but M and I have always been partners. A team. There was nothing we couldn’t handle together. And now I get to handle it for both of us.
And I understand how the boys feel. They’re angry that this is happening to their dad. But what to do with that anger? They can’t be mad at their dad. Dementia isn’t really something you can be angry with. There’s nowhere you can direct that anger. So, it’s easy to get angry with mom and what she is doing, Like I said, I understand. It doesn’t make it easier.
I don’t remember signing up for this.
Maybe that’s the better/worse, sickness/health bit.
Since last weekend, both sons have come around to state that they support me in whatever I decide . . . but that’s as far as the support goes. No one wants to talk about it. No one wants to know what’s going on. No one is standing there with me as I’m making these decisions.
So, yesterday, I went back to the place I had chosen and picked out a room – yes, I actually had a choice. A moving date has been set, assessments have been scheduled, movers hired and I’m in the process of making decisions about what M will take with him.
Doing it all by myself – but making progress.
I am praying for you through this whole process! I can’t even begin to know what you are going through. But I can pray for you.
Thank you! It really does help to know there are people out there who care and support us. I wish one of you had a magic wand 🙂 but until then . . .
I’ve been thinking about you and M. Thank you for this update. Prayers and a big hug as you struggle to get through all the stumbling blocks strewn in your path. Yes, it sucks that you are no longer a “team.” And yes, you are doing it for “the team.” I was starting to go down that path when my husband’s heart stopped. I do kinda understand. Take care of you.
Oh – bless you! Is it terrible that I kind of wish the same thing for M? That one morning, he just won’t wake up? It sure would take away a lot of these decisions and second guessing. I know he wouldn’t be acting out (or acting up) if he weren’t so scared – but that doesn’t me I can handle it. Thank you for being here.
It’s so hard. I didn’t deal with this exactly but it was similar with aging parents. It all just feels so wrong. You’re doing your best and that’s all anyone can do.
You’re so right. It’s almost as though, if we’re dealing with our parents, we kind of expect to have to do it. I never expected this – even when we got the diagnosis. I don’t know what I thought was going to happen, but I didn’t think it would be this. Thank you for being here.
I’m sorry you have to do these horribly hard things by yourself.
I say I’m following you not just because I read you but because all along I have been about 9 months to a year behind you with my M. My support group just had a meeting with a great dementia neurologist and a husband caregiver who had to do all of those things you have just done. It sounds like you’re doing the right things in the right way from what you say. They said deciding to put a loved one into full time care is one of the two hardest decisions a person has to make in their lives. I admire you.
Oh no – I don’t think I want to know what the other “hardest” decision is. Watch me be set up for that one before too long. I’m so sorry you’re walking this path, as well. I wouldn’t wish this on my worst enemy. I hope you and your M are able to enjoy the good days, while they last. Store up all the memories you can and don’t put anything off. Thank you for being here.
It’s heartbreaking to have to be this strong and to have to make all the decisions on your own. I’ve been down this road twice now. Sending hugs and prayers.
I’m so sorry you’ve been down this road, not once, but twice. I can’t imagine anything worse, because you know what’s coming. I almost think that’s worse than being surprised by it. Thank you for being here.
My best thoughts for you. Wonder what that one son that said you were “warehousing” him would say when M gets around to cold-cocking you. You’re doing the right thing. Had to do it with my mom.
I’m so sorry you’ve been through this with your mom – and I thank you for your support! I really think my son doesn’t think his dad is “that” bad . . . or doesn’t want to believe it. He is busy, works odd hours and has an active, young family – so he doesn’t see his dad at his worst. His dad manages to keep it together for the time they’re around each other – of course, he saves the “best” for me. Thank you for being here.
This is so hard dealing with a parent, I can’t imagine the stress and heart ache this must be for you. Prayers for a smooth transition for you, M and your boys.
I appreciate you sticking with me – miss seeing your witty comments on the Book of June. Those were the days . . . I guess I’m most surprised that I haven’t had shingles pop up again 🙂 Thanks so much for being here!
Prayers for you while you help M with this transition. Cannot imagine being in your shoes.
Thank you – I’m counting on all the prayers I can get. Thank you for being here.
I am so sorry. I can’t imagine the loneliness and all the other barrage of emotions you must be experiencing at one time.
Thank you. Fortunately, I have good friends who have kept me from circling the drain. One even took me to Mt. Airy (the inspiration for Andy Griffith’s Mayberry) on Saturday and I got my photo taken in the jail. Maybe I should have stayed there. Thank you for being here.
Prayers for all from a little town in the hills of Tennessee…
You have no idea how much I appreciate all the prayers I can get – I’m going to need every single one. Thank you for being here.
You are a hero. I think about you all the time in my own journey as a pioneer, someone ahead of me on the same road that ends at the same destination. It breaks my heart though, as you said it so eloquently: ‘No one wants to talk about it. No one wants to know what’s going on. No one is standing there with me as I’m making these decisions.’ I feel that way every single day and I feel angry that others don’t get it. It’s not their fault, I just have to find a way to process these emotions. Those of us who are in the same boat, who are your sisters and fellow companions in this God-awful, soul-wrenching war where there are no winners, stand beside you and know the agonizing responsibility you face and the loneliness you endure. These words cannot take away your pain, relieve your guilt or minimize the frustration. Just know that you are not alone and you ARE doing the right thing. You are a good person, wife and mother and YOUR life matters too. God bless you.
Thank you! I’m so sorry to have you as a fellow traveler on this road, but we are here to support each other. It’s good to know my ramblings can do that. Thank you for the reminder that I matter in all this, too. There are lots of times that’s easy to forget. Thank you for being here.
On a different scale, I know how it feels to have adult children who do not step up. I always thought that when the time came, these strong, young people would be by my side. Sadly, that is not the case.
I am so sorry that you have to go it alone.
Sometimes I wondered if I sheltered them too much. Before I could drive, I worked as a candy striper at the hospital and a nursing home (and this is back in the day when they were actually nursing homes) as though I was going to have a career in health care. No. But I went in there every week and didn’t think anything of it. These guys took one tour of a memory care facility and were freaked out. I know it’s hard – but come on! Thank you for being here.
You are amazing and inspiring and one of the strongest people I know. Your candor has left all of your readers inspired and encouraged as they go through their own journeys. I’m proud to call you my friend.
Thank you! Thank you for being here and for your support! I don’t think I could have made these tough decisions and gotten through these days without knowing you were in my corner – cheering me on. There have been many times I’ve thought “well, maybe I won’t do this right now,” and then I think of your advice and what you’ve been through and it keeps me going. You have truly inspired me.
I’ve experienced this from a couple different angles, which is probably why it scares the crap out of me to think that these decisions may not be far off for me with my husband. We don’t even have an official diagnosis yet, but his decline is incredibly rapid in just a few months. I helped him to navigate these decisions with his parents when his siblings were similar to your sons “we’ll support whatever you decide.” Meanwhile he had one parent rapidly declining in Memory Care, the other parent failing physically in a nursing home, and we had a toddler. Also watched how my parents navigated these decisions with my grandparents. My Mom & Uncle were amazing, agreeable and did so well making decisions together with love. My Dad was not allowed any input by his sister in regard to their parents care, only called upon when he was needed physically, or if additional financial support was warranted. I also work in financial services and have witnessed SO many different scenarios with clients and their families. We’re told to plan ahead for this, but I’ve learned that often things change so fast that their is no opportunity, you just do your best in the moment. The biggest take away that I have to keep reminding myself of.
This disease is as hard on families as it is on the patient. Maybe even harder. But I don’t want it to be the cause of broken relationships on top of everything else it is taking away from me. It’s SO HARD, but I try to remember that I see the progression every day – my sons don’t – so they don’t have the same viewpoint that I do. And we all need to have grace for each other. Thank you for being here.