Stolen Memories: A Life Unlived, Lessons Unlearned
July 9, 2013 by almostakiss
Up until this point in my life, everyone I’d known that has died did so while still in full control of their faculties. Whether it was natural causes, heart attack, stroke, suicide, etc., they were able to be recall the majority of their life experiences, up until their demise. I’ve been agonizing about whether I should write the story I’m living. I don’t know if there is anything to gain by sharing this but I feel compelled to do so.
The past 15 months has been a new experience for me. Dealing with an aging parent can be hard in itself, seeing their bodies become slower and more health problems surface. Dealing with a parent that has Alzheimer’s or Dementia is a whole other level of difficulty. I hadn’t really given it much thought what it would be like to live to a ripe old age and slowly, piece by piece, lose parts of your mind and memories. Of course, I’ve been fully aware that Alzheimer’s existed. Hearing about it on the news or even reading about it is totally different from seeing it on a daily basis.
I’m a strong believer in the saying, “Charity begins at home.” I’m not against helping others, friends or even strangers but feel that we should move heaven and earth to help out the family in our household first and foremost. We need to care for our own people and not leave the job to someone else because it is unpleasant, time consuming or emotionally trying.
All my life I’d wondered how anyone could put a loved one in a nursing home. My grandma (my dad’s mother) would’ve been 135 years old on 7/7/13. She died at age 93, when I was 9. I figured out then that our tiny house was too small for 2 adults, 4 kids and an aging grandma. She had lived about a block down the street until the time came when she must’ve broken her hip and went into a nursing home. My (now deceased) aunt had gone into “assisted living” after she decided to sell her house. For years I wondered why she couldn’t just live with one of her 2 daughters. One was widowed with 2 older kids and didn’t work. The other was divorced and lived alone. I swore that I would always have my mom with me, no matter what. It’s funny how life has a way of making us look like idiots when we get self-righteous or judgemental. The very thing we judge someone else for could very well happen to us.
I don’t have children but I assume caring full time for a 92 year old is similar to caring for a toddler. Except the toddler moves faster. As hard as life is every day, I’m blessed to have her with me. I just wish I had HER with me. The body/ shell is here but the person she was no longer exists. She had a mischievous sense of humor that made everyone say she was a real character. That is all gone. Her personality and everything that made her what she was, is long gone. It left slowly at first, then more rapidly. It’s one thing to forget something like a restaurant you only went to once, 10 years ago. It’s quite another to forget the last 30 years of your life. No one gets to pick which memories are stolen. It would be ideal if a person could actively forget all the painful memories and hurtful events of the past. To lose memories you at one time cherished is just plain cruel.
“When are we going home?” is what my mom asks every day. With all the patience I can muster, I say, “We ARE home.” When I ask her where she thinks we are, she says, “Elgin.” That is where we store our RV. So I ask her if she thinks we’re in the RV now and she says “Yes.” When she asks again later, hubby will say, “Tomorrow.” Then she’ll ask again later, “Are we going home tomorrow?” It is maddening and infuriating and beyond sad.
All my life, just about my favorite thing in the whole world was talking to my mom. Having long, heart to heart talks. Deep conversations where no subject was ever off limits. She always listened and offered advice or support, as needed. She shared stories of her childhood and life experiences. Now she is practically non-verbal. She doesn’t like to talk or be talked to. She doesn’t answer very often, no matter how many times I ask her something. Or she answers with something non-related. I thought for awhile it was because she didn’t hear what I said but have realized her cognition is lacking. We may be in the same room for hours and not speak. I try to engage her but no comprende.
She was always stubborn but now fights me about things like going to the bathroom and not picking her legs. Her body doesn’t signal her when her bladder is full so I try to time it about every 4 hours or so and remind her to go to the bathroom. She never thinks she has to go and doesn’t want to go. I have to always keep in mind when she went last and if she refuses to go before dinner, make her go immediately after dinner. This is so odd for me since all my life she’s been self sufficient. Up until early 2012, she was washing her own clothes! Then one day, she forgot how to run the washing machine. I showed her and helped her load her clothes. Then the next time, she had no interest in doing it herself so I’ve been doing it. I don’t mind. She doesn’t know where her clothes hamper is in her bedroom even though she’s had it for almost 18 years. She has always been extremely independent, wanting to do for herself. That is all over. Now she doesn’t want to do ANYTHING. She also used to have a bossy streak and would tell me what to cook for dinner or what dessert she was hungry for. Now she doesn’t care what she eats.
The doctor told me I’m expecting her to behave like she used to and that’s not going to happen. The greatest source of my frustration is trying to keep her from picking her legs. She has skin ulcers from congestive heart failure and they would heal if left alone. At the doctor, I got her some pills for itching. If I give her one, she sleeps ALL DAY but she doesn’t (usually) pick her legs. I’ve told her 100,000 times (no exaggeration) to not pick her legs. I put Neosporin on them and keep them wrapped up (I use paper towels instead of bandages because I’d go broke) and taped on. One was completely healed and we got the other almost completely healed. Then she started on the good, healed leg and now both of them are bandaged. It is more of a habit than anything but she either can’t remember not to pick them or doesn’t care. She does the most damage when sitting on the toilet. I don’t want to have to stand over her while she uses the toilet. In the mornings I wake her and give her her glasses and hearing aids. I do this as soon as I get her out of bed and walked to the toilet. She can’t leave her legs alone while I’m standing there OR after I walk away. I’m about to lose my damn mind. Short of handcuffing her, I don’t see a solution. I’m still afraid she’ll end up losing her legs if they get too infected.
I’d heard about people with Alzheimer’s wandering but she won’t leave the house on her own. She can’t walk far distances so I don’t have that to worry about. A few times lately, she has gotten up super early, gotten dressed and come downstairs on her own. Like at 5:30 am!! I’ve told her to stay in her room until I get her up. She also comes down in her housecoat the day after she gets a bath saying she thought she was going to have a bath today. Then on the day of the bath, when I tell her to put her housecoat on and come down, she’ll get dressed anyway. If I’m not watching her, she’ll head off to bed at 8 pm, not knowing what time it is and thinking it’s later than it is. She can still tell time, as far as I know, and wears her watch every day.
She doesn’t remember most of her possessions, jewelry or clothes. I’ve found her going through her jewelry box almost every night (or morning) and looking at everything like it was the first time she saw it. She also does that with every drawer in the house, every pile of papers, etc. She picks everything up and looks at it like it’s new to her. Over and over this happens. Same with certain clothes, she’s shocked to find out they are hers, even though they are hanging in her room and she’s worn them many times.
It breaks my heart that she can no longer remember how to sew. She was a prolific seamstress, even doing it professionally after retired. She made her own clothes and mine in the past. Halloween costumes, curtains, dog beds, there isn’t anything she couldn’t make. It was her passion and kept her going. I remember when I was working nights years ago and sleeping in the daytime. It was so hard to sleep when it was light out. The most comforting thing was hearing her sewing on her machine on the other side of the wall while I laid in bed. It lulled me to sleep and anytime I heard her sewing, I knew all was right with the world. All is not right in my world, anymore.
My mother was always an incredible housekeeper. I can’t say the same about myself. She always “looked like she’d just stepped out of a band box” (one of her sayings). She wanted everything clean and was strict about everyone washing their hands. I’m vigilant about handwashing too but now she’s let hygiene go by the wayside. She has to be reminded to wash her hands or she won’t do it! EVER. I feel like I’m the gestapo having to police her every waking moment.
The 2 things she answers to any questions I may ask, “I don’t know” and “I can’t!” These both burn me up. The funniest thing is that when I was growing up, she INSISTED that those weren’t answers. I was never allowed to say either one. I had to KNOW WHY I did things and keep trying to do things I might think I couldn’t do. She can still feed herself (with a decent appetite) and dress herself so there’s that. We keep her occupied most days with playing casino slot games on the computer. A year ago our computer crapped out and we couldn’t go long without one simply because there is no other way to keep her busy. She doesn’t want to do much else. She’s always done well with the games and for awhile I thought they kept her mind sharp. Now she’s having trouble remembering to click on the LEFT side of the mouse. I’ve told her 10,000 times (no exaggeration) and she still clicks with her right ring finger (not index). She ends up screwing it up and opening all kinds of other applications and programs on top of what she’s supposed to be playing. This is well and good if I am home (in the room). She no longer calls to me for help EVER even though I remind her all the time to just call me if it gets fouled up. Then I was afraid she forgot my name. She always called me Kitty. I asked if she knew who I was and she said “You’re my daughter.” So I told her to call out “Daughter” but she still won’t call out for help. I may have to get her a bell to ring like the drug dealer’s grandpa in “Breaking Bad” (season 2). She would probably forget how to ring it or what it was for. I’ve been lucky to be able to go on a half hour walk with the dogs while she amuses herself playing. Now I’ll come back and the game will be all messed up on the screen. It’s not a big deal in the realm of things but it makes me realize it won’t be long and I won’t be able to leave her at all. Hubby keeps reminding me that it will only get worse. Gee, thanks for that.
This is only the tip of the iceberg of what I’m going to be dealing with in the future. Now that I’ve broken the ice with this post about it, I’m expecting to do further updates here. Now that I’ve thoroughly depressed myself and everyone on the Internet, I’ll move on to another topic next time.
I still have no plans to ever put her in a nursing home but I’m starting to understand why others in my situation might. It really is all consuming. The emotional wear and tear on your heart and soul is palpable. I’m feverently wishing for a cure for Alzheimer’s/ Dementia. Hopefully, in 20 years the entire baby boomer population won’t have to go through this. I fear for myself. That I’ll end up with it as well and have no one to care for me or about me.