I am glad I have my Mom Book where I journaled the experiences of dementia early on. We began Our Dementia Journey in early September, 2016. I began my Mom Book 9/21/16, and stopped in August 2017, having used other means of expressing my thoughts and the happenings with Mom. Today, January 2, 2018, I can say Mom sounded really good on the phone yesterday, happy and lucid. She seems to do better when I am NOT around her as often. I’ve been advised to shorten my visits with her, make them less frequent, and make sure there is a definite STOP TIME that is not set by me. e.g. about 30-45 min prior to dinnertime or an activity that will draw her away from her room to do something independent of me. I shall heed that advice, even though she seems clear right now. She is happier and certainly less angry when my visits are shorter and less frequent. I think my presence reminds her that she is no longer the independent woman she has always been and still desperately wants to be. I’d wanted so badly to spend time together doing things we both enjoy! We both love to sew and do crafts, so a couple months before Christmas I took Mom some Christmas craft books and sewing ideas, suggesting we do some activities together, make gifts, etc. She said she’d look at it but when I’d ask later she declined the idea, said she didn’t really feel like it and none of those things interested her.
It is unfortunate that now, after all these years of living apart, we live near each other and she either doesn’t remember how, or no longer wants to do many of the things we both enjoy. We still have a common love of going to movies and out to eat, so we can certainly do that when she is in a good mood and feels up to it physically. She tires so easily and we are both scared of her falling again.
From journal and FaceBook entries of the past year+, I find my typical inward struggle as I faced an unknown, the Big D, that has now become so entrenched in my life I have a hard time remembering BD (Before Dementia).
September 21, 2016 I made my first entry in my Mom Book. My younger brother, Darwin, and I were at Mom’s house while Mom was in the hospital due to a fall. We stayed several days and Darwin took care of some repairs around the house, I cooked and cleaned, tended to Mom. My entry this particular day ends with a OOMOM (Out Of the Mouth Of Mom): Darwin had the local fire department install special smoke detectors and put Mom in their database for a mobility issue so in the event of a fire they will go straight to her bedroom. Fire Dept batteries are good for 10 years. Darwin also unclogged drains, installed no-slip strips in shower, fixed handrail at side door, and more. Text from Darwin on this afternoon: “I told Mom about the tub issue. She went ahead & told me where the Soft Scrub was located. Sheesh.” HAHAHAHA!! That’s our Mom!
9/22/16 I returned home (Georgia). On the drive Mom’s long-time GP (General Practitioner) called me, raising the medical alarm and insisting Mom see a neurologist. I told him we’d been pushing for Mom to do that for some time and she’d refused. He said he’d been setting appointments for her and she would not show up, and when called, would state she had no knowledge of the appointments despite having received letters and phone calls to remind her. He said he’d been very concerned for Mom for a long time and at minimum she needs in-home care, possibly 24 hrs a day. Said he sees signs of Lewy Body dementia and Parkinsons dementia. We planned a referral to neurologist at her next GP appt.
11/15/16 I had a long talk with Mom on the phone. I remember it very clearly- I was in my bedroom and pacing from there to the master bath as we spoke, at times lying on my bed staring at the ceiling. Incredibly, my concern for Mom was echoed by her and it was both a relief and even more distressing as she told me she knows something is very wrong with her. She was so scared to find out what it is, having experienced dementia with her own mother. I encouraged her to find out and told her that Darwin and I would be there with her for support, and that we will do everything we can to help her. I told her that we need to know what we’re dealing with so we can plan and that there are medications that can slow dementia, if that’s what it is.
It was after this phone call that we began speaking weekly, instead of every other week. In subsequent calls and visits, Mom indicated signs of paranoia, extreme anxiety, confusion, and the falls continued to increase. At one point she’d fallen in the front yard on a Saturday and it was very cold out. She could not get up and doesn’t know how long she lay out there until some Mormons happened by and helped her into the house, staying with her and making sure she was ok. I thank God for those young men and early in 2017 I was glad I had the opportunity to thank them in person and give them a hug. I was driving the 5-hr each way trip at least every other week, staying a few nights, and coming home. At times Mom would come with me and stay with us, but there were problems with that, as I owned a store and would spend time cleaning up urine and feces, and helping Mom before going to work long days in my store, where my thoughts were less and less on the store, and more and more on Mom. I learned I do not have the stomach for cleaning another person’s diarrhea, especially when it was on my kitchen floor. I wondered if the smell of poo would ever leave my nostrils.
During those months and several months prior, Mom would tell me she feels scared a lot, not safe, shaking inside and outside, experiencing extreme fatigue, and short of breath, and how uncomfortable she was living alone, she fell several times in her house. She frequently complained to friends and family that she was scared and could she spend the night with them or could they spend the night with her. She believed someone was watching her from outside her house and that she met a “new friend” at the doctor’s office and asked her to write checks for her. It was after that admission and looking through her checkbook I found other people’s handwriting in her checkbook and began taking over paying her bills. I began getting more information from Mom’s friends. One friend and her husband had found Mom in her living room floor one day when she hadn’t shown up for dinner. She’d fallen hours earlier and could not get up.
Over time our calls had changed from bi-weekly to weekly, to daily or every other day. Darwin and I met at Mom’s several times as she was in and out of hospital (injuries from falls) and he took care of getting the handicap hangtag for Mom’s car as well as renewing her plates, and a host of other things as I tended to Mom and doctor appts, cooking, etc. At times Mom would come stay with me at my house and I would stay with her in TN. Darwin, an EMT, organized Mom’s meds which had been terribly mixed up, and we spoke with the doctor about streamlining them. She went from 16 prescriptions to 8!
All this time, Mom’s blood work and all tests were “normal,” not deficient in anything other than Vitamin B. Late January I began researching in-home care options and even some Senior Living. By the end of January, Mom’s confusion was at an all-time high. She could not remember ANYTHING, short-term or long-term. She called me daily wondering where I was and why I didn’t show up to take her to doctor appts, etc., not realizing she didn’t have any appts when I wasn’t with her.
Given the state I was in most of 2017, I know I must make lifestyle changes or I will not survive Mom’s disease, either. I must establish boundaries with her and take care of myself as well as fulfilling my responsibilities to her care. After a two year hiatus (does that word even apply when the time span in question is YEARS?), I started running again last fall and now that it is a new year, I have begun a circuit strength and cardio physical training program. I am also more cognizant of my food intake- caloric and other nutritional values, and began a meditative program and yoga for relaxation and stress reduction. I use doTERRA essential oils for aromatherapy and as health aids and want to get rid of my remaining prescriptions over time, replacing them with oils. As Mom so lovingly points out to me, though, I “never finish anything. You’re always starting things and never finishing them.” Harsh as it is, there is truth to that statement and I do in fact feel I am a complete failure at anything and everything I’ve ever attempted. However, I do not want to and will not enter into this new year with a defeatist attitude. I need to be realistic but I don’t want to be defeatist. Putting to rest the nagging accusations in my mind will go right alongside all these other things I am attempting. As of today, Tuesday, January 2, 2018, I’m doing pretty well with my new lifestyle. DAY TWO.