I think for many people, their outside world is a reflection of their internal one; of what’s going on inside their mind. One reflects the other. It’s orderly, or it’s chaotic. I think an Alzheimer’s mind must be like having 412 browsers open on your computer, all at the same time, with several of them frozen, several not working, a few keys stuck, and several beginning to crash the system. Chaotic to say the least. These pictures are from my mom’s home, right before she moved in with me. They are painful to look at, as I think they are a symbol of how her brain must have been functioning at that time.
Mom is a hoarder. She’s always had a lot of stuff, and being a depression era baby, she never threw anything away. Prior to Alzheimer’s, her home was neat, and the hoarded stuff was in closets and under beds ~ out of site. After Alzheimer’s, she was no longer able to hide it. Her home is overwhelming to me… the thought of my brother and I having to go through everything, clean out the house and sell it, is completely overwhelming. So. Much. Stuff. To be honest, I’m really ticked at my parents for doing this to me. They were retired for years before dad got Parkinson’s and mom got Alzheimer’s. They could have begun going through things, donating, down-sizing, throwing out, etc., but they chose not to. “All this stuff will be yours one day!” Ugh. The house is huge; aside from the kitchen, living room, dining room, family room, and 3 bedrooms, they have a mother-in-law’s suite with a bathroom, large bedroom and walk in closet. They have an office, the size of a two car garage, filled with file cabinets and papers about who knows what. They turned their old 2 car garage into a library, with floor to ceiling books on all four walls, prior to building a new attached garage. There is a tool area and an art room the size of a bedroom, where my dad painted. So. Much. Stuff. I made a promise to myself and to my kids that I would never do that to them. In fact, I’m in the process of down-sizing and moving to a smaller home, with no basement to collect stuff. It is freeing to just keep what’s actually needed, and not a lot of extra things. People all over the globe do it. More experiences, less stuff. That’s what I want my life and family to be about.
Mom’s a hoarder, but she’s what I like to call a ‘high-end’ hoarder. Mom had beautiful tchotchkes from all over the world. Exquisite Lladro figurines, but sitting next to a plastic statue from the Dollar Store she thought was cute. Hummel figurines next to things from Walmart. Every time I went to Florida to visit her for the few years, prior to her moving in with me, I tried to go through one closet, one area of the garage, etc. If I threw something away, she would get it out of the garbage. She had bags and bags of empty hangars in the garage. “Mom, every piece of clothing you own is on a hangar. You don’t need to save 200 extra hangars.” ‘I might need them.’ I threw them away, and the next day they were back in the garage. There was a box of old mugs in the garage that had been sitting, unopened for years. I started to get it, and mom said “You may not give that to Goodwill!” I said “This box hasn’t been opened for 20 years. I will give you $5 if you can tell me what’s in it.” Of course she couldn’t. So it’s become very clear that my brother, sister-in-law and I will need to clean out the house without her in it. She wants to see her house again, but I am torn. First, she is very difficult to travel with. She doesn’t move quickly through airports, and it’s hard to use public toilets when wearing Depends. But I also think it might give false hope that she could live in her home again if she sees it. She also won’t let me throw things away, which would defeat the whole purpose of the trip for me. On the other hand, she would enjoy seeing her friends. What to do, what to do?
When mom moved in with me, I told her that we were not going to hoard things in my home. I know what you’re thinking: good luck with that, right!? Every night when it’s time for bed, I make her put away the 20 pants and tops that are on her bed. She moves them towards the wall and wants to sleep that way. In Florida she had a king sized bed, with most of her wardrobe stored on her bed, with just a small edge to sleep on. We are not doing that in my home. So every evening we clean off the bed. Every night we throw away the 15 used tooth picks on her dresser, along with multiple used tissues, that I’m not sure why we’re saving. We are not going to be hoarders in my home. Every bag the newspaper comes in - if I don’t take it off the paper first, I find them wadded up all over her room. Managing the hoarding is a full time job!
The physical hoarding I can do something about; I can try to manage it, even though I know at some point it will not be a battle worth fighting. It’s the emotional hoarding – or managing all the open tabs in her brain - that’s harder for me to deal with. Alzheimer’s is shrinking her brain, and she can no longer track things, especially with so many browsers open. Its one minute saying “I want to stay here. I want this to be my home.” To the next minute asking for the name and number of a lawyer (to report me, as I made her eat her dinner before having her dessert.) It’s not knowing who I will come home to after work – the kind mom, the anxious mom, or the mean mom.
I keep thinking that peace and order and no hoarding in my home (and her world), will decrease the incredible anxiety she experiences, but I’m not sure it will. She has been so focused on death the last few weeks. First, she tells the aide I’m trying to poison her with her pills at night. Then she asks me if I want her dead. She cries almost nightly saying “I don’t want to die.” With my most positive, upbeat voice I say “Mom, you’re not dying! The doctor says you are very healthy.” And she sighs in relief. She got out of bed last night, came out crying asking if she could just live one more month, she doesn’t want to die this month.” So sad. She also thinks her friends have died. She’ll say “I know Ann’s husband died.” And no one has died. It’ probably time to call the doctor to adjust the meds. I know I can’t medicate away Alzheimer’s, but medication can help reduce the anxiety, and I think hers needs to be adjusted.
Alzheimer’s is an adventure for me. I often have too many tabs in my brain open as well; too many things to juggle. I’m learning that I need to manage my stress and self-care while I can; while I’m aware of what’s going on, so that I can be in this for the long haul. Mom's mother lived alone in her own home till she was 96 years old – so I think mom might be around for a while!
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