Sunday, June 8, 2014

Moving Back Home

Hello Friends,

The past year has been one of the long haul ones. It was this time last year that I started treatments in Alaska for my illness, (on top of the infusions I was already getting on a regular basis). Fun times never end. In addition to my own health issues, my parents in the Midwest are getting older and having issues. So I made the decision to come back to Illinois for a bit. Like I said fun times never end.

So, here I am, in Illinois, enjoying the comforts of various couches. Why couches and not my own place you may wonder. I know, after the past few weeks, I am wondering. I think it is because I do not want to establish a place of my own. I do not want to give up on my living in Alaska, (or Kentucky), dream. Alaska is an amazing place to live. The beauty and wildlife adventure cannot be beat. The cost of living is higher than I like but it is getting like that every where. So, in my mind, if I do not get my own place, I will eventually leave to find my place. Right? Help me out and say right.

In case anyone is wondering just what kind of wonderland I have signed up for my mom has been diagnosed with diabetes and dementia, (testing for exact diagnosis starting now). My dad has diabetes. So I am learning a healthier lifestyle cooking for them. My dad is the easy one. He knows I am using diabetes meal planning and will eat what I put in front of him. My mom though is a whole another story. She is a picky, junk food loving type of eater. One who has no memory of the Doctor saying she has diabetes and needs to test once a day. I have to watch her carefully or she will pop something in to munch as I get the test ready. I find myself in the strange position of being an adult child living in my parents home where I need to be the parent. It is such a strange position. I have to admit I am having difficulty with it. I haven't found the combo that lets me fulfill all the roles I play now. I try to respect the fact that this is my mom's home and she recognizes me as her child. The role I have to play though interferes with this though. I have to tell her things to do, what to wear and what/when to eat. I worry that she will feel that I am taking over, that she will feel useless. I worry that I will fail at this. I freely admit that I don't know what the hell I am doing or how to do it. I feel like I am learning to swim - not a good thing. I can't swim today because of memories I have of nearly drowning when I went for swim lessons. Good start right? I keep telling myself that I will do this. That I can do this. After all I raised children with no help. I had no instructions for that. I married and divorced three times, obviously no instructions there. I have infusions regularly to survive and I have had radiation. No fun there, (though when I got the first treatment I bought glow sticks. When I got in bed I broke them open and placed them under the sheet around my body. Seeing the reactions of my friends who were helping me was pretty funny so I guess there were moments of fun). I had my first grandson with me while both his parents worked, (me during the week, weekends with mom and dad deal). No instructions. And then I had another grandson with me for 5 years. Six months into it I knew something was wrong. Another six months and I was told autism. Trust me when I say I had no freaking idea of anything then. All I knew was Dustin Hoffman in Rainman at that point. I looked at the doctor and said what is the most important thing for him to know. He told me communication. So I learned sign language, we watched every word show I could find, I read to him, we played find the happy face, sad face, mad face, etc face for hours and I read every book I could find on autism. I searched out blogs and looked for products to help. I might have been lost but I had a map. And now he is verbal, loving, smart and fun though he still misses a lot of clues that come so easy to most of us. He taught me as much as I taught him. But this dementia thing I don't know what to do with. I already know the answer to what is most important - my mom being happy as I let her go. What the hell is that? I know we have to let go - death is part of life- but my heart screams not yet. So what do I do? I'm not even certain I am strong enough for this. I have no experience with diabetes or dementia. I am reading up but everything is contradicted. If you have any ideas, suggestions or want to share an experience please leave a comment. My sanity may depend on it. Haha.


Barbara said...

I can relate. I moved from Alaska to Georgia 7 years ago to be "closer" to my parents (that was where a job was, although my parents were in Indiana...Georgia is a lot closer than Alaska). Two years ago I quit my job and moved back home. My dad had heart issues & diabetes, my mom had diabetes and diagnosed with early stages of dementia. My brother was in DC with his family, my sister was in KY with her family, I was the only one "foot loose and fancy free." I have never regretted the move. I was back about 6 months before my dad ended up in the hospital, he was there 3 months, then passed away a week after he came home.

So, it's me and Mom. She knows she has memory issues, but forgets :-) The one thing I can stress is maintain a set schedule. I let Mom wake up whenever she wants, and make sure she takes her morning meds at 7:00. Sometimes she wakes up at 6:45 to go to the bathroom. I figure she's awake enough to take her medicine, so she takes them (and goes back to bed if need be). Since she knows she has memory issues, she's afraid to leave the house (which I am glad). I have found a job so, I do leave her home alone (but I am glad that our neighbors also keep an eye out for her). I have Meals on Wheels set up, to make sure someone checks in on her at least mid-day. I tell her that the meals she gets is considered her medicine. If she doesn't eat it, then she would end up taking more pills. She has a small whiteboard that I put notes on. I put the day of the week at the top of the whiteboard, then give her things to do, such as "coffee's ready have a cup," "wash dishes," "sit outside on the porch," "fold laundry." Sometimes she does it, sometimes not. Simple things that would be no big deal if she doesn't. Most evenings and weekends, we go for a drive. It gets her out of the house, and sometimes we'll pass something that might trigger a memory.

I have a pastor friend whose wife has Alzheimer's. He called the disease "The Monster." It helped that when "The Monster" would take hold of his wife, he could rail at it, and still care for his wife. The Monster would hide the remote, while his wife would help him look for "something." Finally, The Monster wouldn't let go of his wife, and he ended up having to put her in a facility.

One thing I will say, keep your sense of humor. If you can't laugh at these issues, you will just cry and go crazy. Also, find a support group in your area. AND keep in contact with their doctors. They are extremely helpful when they realize that a child is now the caregiver.

If you want to share ideas, or just "chat" my email is bbeell (at) windstream (dot) net

Frances said...

Thank you so much for commenting. You have wonderful advice. I am going to go buy a whiteboard. It will take more than one trip. The first time I go I look around and buy at least 10 items - none of which will be the board. The second trip I may possibly find 10 more items I missed the first trip. By the third I should have the board.

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