Let’s get real…

True confessions of an imperfect daughter.

Almost 3 years ago my mom was diagnosed with Alzheimer’s dementia. At that time she went through an evaluation process and it was determined that she was probably 2 years into the disease. I had an “aha” moment and twinge of guilt. Not knowing what was going on with Mom I had become increasing frustrated with how self-centered she had become. I remember hanging up the phone in frustration one evening and telling Mike that my mom had become even more of a self-centered bitch than she already was.

You see, my relationship with my mom has not always been easy. I’m not going to try to analyze it in this blog post but suffice it to say she had issues, I had issues, families have issues. I believe our issues were pretty standard, with our own unique family dysfunctions. My mom has always been high-strung, nervous and cold; as her disease progressed those traits were magnified. To calm her nerves, give her a slight mental boost and soften her interactions with Dad her doctor decided to place her on her first dementia medication and a low dose anti-depressant.

What a difference! She got a boost in cognitive function and I had my mom back with the added benefit that she became more easy-going than I had ever known her to be. So here is the first part of my confession…I liked her better this way. The barbed comments, negativity and cold assessments were gone. Mom has always been sharp and quick-witted, with this change she became even funnier – no filter but also no back-handed digs. This is why I have repeatedly made the comment that my mom is gone and I am caring for someone else now.

My posts have been made during this period time. The challenges have been hard and Mom continues to decline but the relationship has been strong and easy. I’ve shared the honest truth of it here with you. But there has been another change since placing her in memory care and I know that to keep this blog real and relevant I had to confess the struggles to you, my readers.

Mom took the news of her move fairly well. We settled her in to her new apartment and all was calm. Within the first two days a change began to happen. I don’t know how to explain it, and I assume it may be common, but her mental wheels began to turn more than they have in a long time. I think being thrown into a new situation activated her “fight or flight” mechanism and she began initiating conversations again, being more aware of her surroundings and of those around her. This change also brought back frustration. She wants to know when she gets to go home. Who makes that decision? She knows she has not seen a doctor since being here so who is evaluating her? Then the issues become more personal…will she ever live with my dad again? Are other women flocking around him now that she is away? Will he move on without her? Are we dumping her? We have decided to be honest with her and answer her questions directly and with compassion. It is hard, she is sad but as we talk she thanks me for not lying to her. This tears at my heart…

Then it becomes even more personal. She is pushing my buttons; bring up past criticisms, opening old wounds, saying things that used to rile me up. I kept my emotions fairly well reined in, only popping off a sassy retort one time. Stuff it down, do what needs to be done, finish what I came to do and make sure she is settled before I leave. Done, done and done. Success.

I get in my car to head home and all those stuffed down emotions come bubbling out. I. Am. So. Angry. At her for making me feel things I haven’t felt in years. Angry at me for letting it get to me. Angry at her for ripping open old wounds. Angry at me…for gods sake she has a disease, surely what she was saying was not intentional, just a muddled up mind lashing out at the one who is near. Angry at her for…what? The past? The guilt? The shame? This interaction happened two days ago and I still don’t know. I still haven’t fully come to terms with it.

I have a therapist I see on occasion, I like to say I see her when I need to get my head screwed on straight. If you have never met with a counselor, priest, pastor…any impartial third-party, I highly recommend it. Talking things through with someone who has no skin in the game, whose sole focus is on you and your well-being, is extremely helpful. I am seeing her today. Thankfully this appointment was already scheduled – I knew I would need to get grounded after moving Mom and prior to Mike’s surgery. It is almost guaranteed that my outlook will change and I may wish I had waited until after my appointment to make this post. But I owe you all reality. I’ve promised the good, the bad and the ugly. Well, right now it is ugly. I’ll keep you updated as I work through this next phase. Being human is hard and the struggle is ongoing.

Some of you are already on this journey, some are farther along than me, some have just begun and some fear it is on the horizon. Let me tell you, it is a marathon. Learn all you can. The 36 Hour Day by Nancy Mace is a good place to start. It is a roadmap that helps set your expectations for what is to come. Your next step – get you a person; a therapist, clergyman or someone else who is not part of your inner circle. To get the most from your person be 100% honest with them. It hurts at times but if you only say what you think they want to hear, or share the version of yourself you want to be not who you are, you will not get the help you need.

Lastly, laugh when you can; cry when you must. Know that you are not alone.

The Gap

You probably knew that with what is going on with my mom a blog post would soon follow. Writing helps me. Getting the words out of my head also releases them from my heart.

I’ve known this day was coming for quite some time but I don’t think you can ever be fully prepared. Mom can rally and be fairly cognitively aware and yesterday was a good example. As each of us kids showed up I could see her becoming a little more suspicious of what was going on. We live far enough apart that other than formal family gatherings it is rare for all of us to be in one place at the same time. As the last of my siblings arrived I actually saw her start doing a head count. And then the meeting was called to order…

She took it well, my dad not so much. He was pretty weepy and had to make several trips to the restroom. We loaded up the obvious stuff and made decisions on the lesser things fairly quickly. My siblings and I work well as a team and before noon we had two pickups filled and were caravanning our way over to Mom’s new home.

This is where the picture in my head of how things would go started to deviate from reality. Not in a major way, but in minor nuances and “aha” moments. There wasn’t any hand holding from the facility. We were basically left to ourselves to move stuff in with no formal intake process. (The intake process happened later in the evening, once the chaos of the daily activities of the ward died down.) It was right at noon so they offered a lunch for mom and it was helpful to have a place for her while we setup her room and got things in order.

Once last-minute things had been brought from the house and the final touches put on the room I started to see the gap. I hadn’t really thought about it. We were all eventually going to leave. Even Dad. Mom would be left in a new and unfamiliar place. Unable to effectively get herself around so she could learn her new surroundings. Even navigating the logistics of her room will not come easy for her. I started to fully understand exactly how many things Dad has been managing. Every. Single. Day. Day in and day out.

He gives the structure to her life. Hours, days, weeks, routine, these are all lost to my mom. Dad gets her up, makes her breakfast, gets out her pills. He runs the TV and makes the calls. He knows when it is time for lunch and gets them both to the dining room…same process for dinner. He fixes her bra when she puts it on backwards. She can putz around getting dressed, lay down and take a nap halfway through the process, and when she finally emerges from the bedroom Dad will remove one of the shirts if she has put on two. In one fell swoop this safety net is gone.

My mind knows she will have a new safety net, one that will develop over time as her old one did. A safety net that will come with many extra things my dad can’t provide, but the heart discards that and runs on pure emotion; logic be damned. She will have a new safety net…

But it won’t be us.

I felt like a parent leaving a child at school for the first time. Will she make friends? What if she doesn’t get along with others? Or others don’t get along with her? Will people be respectful of her things? What if someone takes something that belongs to her? Who will stand up for her, defend her, protect her? What if she gets confused in the night?

This being a memory care facility the typical social aspects of coming into a new community aren’t there. Many residents are in their own world. Introductions are awkward at best and will probably need to be repeated often. Everyone is confused and lost to some degree. How will she get integrated? How long will it take? There is no road map. I just want a god damned road map.

I feel like a fool that these things had not crossed my mind until yesterday evening. It doesn’t change my mind on the decision that was made. This change was necessary for so many reasons; for the well-being of both my mom and my dad. I just wasn’t prepared for the stark reality of the depth and breadth of the gap that will slowly need to be filled.

I woke up several times in the night and each time wondered if she was awake, confused, lost. I want to get in my car and go see how she is doing. At the same time I know she needs time to assimilate. We need to find the perfect blend of involvement. If we step in too much and try to fill the gap she will not get the full benefit of what The Waterford has to offer for her. So, here we go, another new normal. I am getting very tired of new normals. What is wrong with things just staying the same?

The short answer is, that is life. Ever changing. There is no normal. Adapt and keep moving forward. Humankind has been doing that for years on end. I am not the first person to want the cycle of life to stop and I am sure I won’t be the last.