These are the very dilemmas we are facing at this point with my mom. While, for the most part, she is able to meet her basic needs, there have been some safety issues that are of concern to us in leaving her home alone. In talking with other members of my online support group, my dad and I have concluded that we do not want to wait until the moment that disaster strikes to realize that she needs full-time supervision and care. We are in the process of obtaining Social Security benefits for her; in the meantime, it would be quite costly to bring in a full-or even part-time caregiver and aren't in the position to do that at this point. Until we are able to receive some sort of benefits or caregiving grants, we have family coming in a few times a week to help supervise mom while my dad is gone at work. Hopefully this arrangement will continue to work until we are able to obtain some funding to assist us in her care.
Mondays are my day to go in and "babysit" my mom. I've been doing this for a few months now, and mom is still resistant to my being there. There is usually the preemptive measures attempted by mom the night before (when I remind her I'll be over in the morning) to prevent me from coming,
"You don't need to come over, no. I'm okay, I'm fine. I don't know why you think you need to come over every time on Monday."
Followed by my attempted pacification,
"I know you're okay, mom. I just want to come visit you and help you out. I know you don't always feel good, so I thought I could help and keep you company. It must be lonely being by yourself everyday."
Despite her resistance, I always show up on her doorstep every Monday morning. I usually let myself in with my housekey.
Last Monday, after my boys continually rang the bell while I fidgeted with my keys, mom cracked open the door, peeked her head out, and said, with obvious disappointment and annoyance in her voice,
"Oh. It's you. I was hoping you weren't coming today."
I chuckled (I know better than to let it hurt my feelings) and let myself in. As usual, the house was dark and stuffy. Mom gets very hot and sweaty while blow drying her hair. She believes that only if she keeps all the doors and windows shut, and every light off, that her house will remain cool. Often times I find her sitting in her room in the dark, on the edge of her bed, arms folded across her chest and her posture slumped over as she stares down at the ground. I admit I feel somewhat of a shut-in when I am at her house. When I arrive, the first thing I do is open up the curtains in the living room-after leaving the front door open to air the place out. She usually goes back to her bedroom to finish getting ready-getting ready for what I don't exactly know. Ready for a day of sitting at home. She doesn't want to look like a "Plain Jane", even for herself. When she makes her way back into the living room, she immediately shuts the door and complains,
"I don't like it when you leave the door open. There's yucky stuff in the air that comes inside."
Sometimes she will swat at the "yucky stuff" in the air (which I only see to be normal lint that can only be seen in the light), followed with, "See? Ewe, no, yuck!"
Sometimes she will leave the blinds open; other times she will close them and complain that it makes the house too hot. The sun hits the opposite side of the house, and I don't notice the house getting any hotter with the blinds open. I usually open everything back up when she leaves back to the office to play games on the computer, only to repeat the process once again when she comes back out.
One of my Monday duties is to clean out the fridge. This has become a sore spot with my mom. She gets angry with me for throwing out rotted food.
"I don't like it when you come over and throw my good things away, it makes me mad when you do that!"
On a couple of occassions, she has dug the rotted food out of the trashcan, insistent that she is making it for dinner. I had to call my dad to forewarn him about the situation and let him deal with it when he got home. I feel bad to push it off on my dad; it's difficult for me to be in a confrontational situation with my mom. On one hand, I can empathize with how she must be feeling. It's hard to accept this role reversal, with me acting as her mother. And in her mind she is perfectly fine; she doesn't need me to come in, invade her space and throw away her things, even if it is rotted food. On the other hand, I simply cannot allow her to eat rotted food and risk her and my dad getting sick. I've learned to try and clean out the fridge while she is away playing her games or fixing her hair. But when she catches me, it isn't pretty.
Many times, we will run errands to the bank or grocery store on my Monday. Lately, I've been trying to get her to do more than play computer games all day. A couple weeks ago, I brought over one of her favorite games from the past. When I told her the game by name, she had no idea what I was talking about. When I coaxed her to come and sit down and see what I was talking about, she remembered how to play the game. In fact, with only one minor reminder of one of the game's rules, she was a great player. I only beat her by one turn.
By naptime, she is practically pushing me out the door. She wants to be alone in an abolutely quiet house. My youngest son is usually in the other room napping, and my 4 year old quietly watches a movie. I firmly, but gently, tell her that I will be sticking around for a while longer and use that time to clean up around the house and organize some of the chaos. We could literally not say a word the entire time she's napping, but she would still complain that it's not quiet enough. Eventually, she's going to have to adjust to having someone around 24/7. May as well help her adjust to that now.
By the time I get home, I feel a little overwhelmed as I look around my own home and see the mess that I didn't have time to clean before I left the house: the breakfast mess that is both on the floor as well as the table and in the sink, the toys that have been scattered about, shoes that were pulled out of the closet in a rushed effort to find each child their shoes, laundry piled up waiting to be thrown into the washer. I feel physically and emotionally drained. Not necessarily because my mom has worn me out. It's hard to put to words; the situation is just draining. It is very despairing to watch someone you love slowly slip away. Yet, as maniac as my Mondays are, I am grateful to be able to help and give back for all the many things my parents have done for me over the years. I would hope that if I found myself in this same situation someday, that my children would be there for me. I know that my mom is oblivious to what we are doing for her now, but I believe that someday, in the hereafter, she will know everything we've done for her. Someday, she will be whole again; she will be able to look back and see, through my actions, just how much I love her. That is my hope.
As I read this blog, I think about the times I spent with my mom and my aunt, both of whom had forms of dementia. I remember how exhausted I would be all the time. I lived with Mom after Dad passed away, and my aunt lived next door. My older sister helped a lot, but our two siblings were very problematic - both involved in their own lives, with their own issues, and unable to help. Interesting how most of the time I don't remember the really hard things any more. Mostly I remember the funny things, and the sweet moments. I have generally said that I wouldn't have wished those years on my worst enemy, but I wouldn't have traded them for anything. My aunt has been gone almost nine years, and my mom almost eight. I miss them every day, but I also know they are in Heaven and I will see them again. Thank you for what you are doing for your mom (and dad). I am sorry for what you are having to deal with. God bless you.
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