February 18, 2019, Leslie Trichka Beery, VIS Chair and Webmaster, Women’s Issues Chair, Fort Morgan Chapter, NSDAR
Post picture provided by Leslie Trichka Beery – typed and phrased by Marcia Ziegler in response to her illness and trying to describe the feelings and fear associated with it.
As many of you know I am currently in a caregivers role for my parents who are in their late 70’s and each have health issues. My mother has Alzheimer’s Disease and my step-father has immune issues and keeps getting Septicemia/Sepsis which has been debilitating to his joints leaving him bedridden and dependent on others for everything. My husband and I have been living my parents since May 24th 2018, the day that my step-dad fell and was rushed to the hospital and put in ICU. He spent 100 days in rehab facility after his hospitalization and then was hospitalized two more times for sepsis since he was home. During this time my mother has actually improved in some areas, she has more socialization now and I involve her in things that are outside of her box — but there is a definite change happening with her illness as well. My Mom is tired of all the home health people in and out of the house all the time for him. RN, PT, OT, Home Care, Social worker, and medical equipment deliveries. She gets very negative about the situation so it is important to divert her attention and stay positive and upbeat at all times no matter how tired I am. My Mom has very teary days, mostly around how appreciative she is that I am helping her out and how proud she is of my brother and I. She also has tears about not being able to remember things and feeling embarrassed. To change the mood and help her work through some frustration and anxiety we go for walks, go to the book store, go to the museum, watch author interviews, talk about gardening and sometimes I just bring up a subject and we discuss it until we are both convinced we have saved the world. I can usually always change her mood and realize that I have to keep my own attitude in check at all times – I really think she picks up on anxiety and stress in other people and adjusts her own mood to match.
Last year, early in the year I was going through some anger issues around this disease and what it is doing to my Mom. I found that I felt angry and kept it inside because I did not know who or what to direct the anger at. It was driving me crazy so I tried to think of something, anything, positive to try and channel the feelings and work through the anger portion. I decided to find something that the two of us could do that was not difficult and not frustrating. I decided on journaling, more specifically, a discovery journal called “Like Mother, Like Daughter” by Paula Spencer Scott and Page Spencer. It is written and intended for young mothers and their teenage daughters but I adjusted some of the questions and sections to reflect my Mom and I and documenting who we are, what we remember, and capturing some family stories before the memory and ability to communicate is gone. We have a long way to go still and lots of blank pages but the conversations and memories it triggers are amazing. Mom calls it our trip down Memory Lane together. It is emotionally draining for me but it seems to be a sort of tonic that lifts my Mom’s spirits and brings a glow to her face.
My step-dad is bedridden and needs full care (diaper, catheter, bed baths, IV, etc….) We have home health come in 5 days a week for 2 hours to help me with diapers and bed bath but I am solely doing the site to stand and hoyer transfers, meds, cooking, cleaning, and everything else to take care of him and my Mom. I make him get out of the bed part of the day and sit in a recliner and I use the different lifts and gait belts to move him. He was doing the majority of the care giving for Mom and I was coming over 2 or 3 days a week to help for part of the day but I have a business, grandkids, responsibilities, etc…. I have had to put all of that on hold because there really is no one else to step up in the family to help. As I have been here it is apparent that my step-dad was not taking care of her properly but made us all believe he was. That is not to be taken negative or in any way that we blame him for any type of decline. They are both elderly and have health issues that have been going on for awhile. When you are aging it is tough to let go of independence and that is where we were before May 24th. We helped with a lot of things but knew that they both wanted that independence and were not ready to have family step in. I have been able to make a difference since May with regular medication, eating better, increased interaction, exercise with chair yoga and walking, and just being with Mom. I have pushed my step-dad with different things to increase his independence with small things that help him to feel more in control of his situation.
My brother and I have power of attorney for Mom, financial and medical. We both have medical power of attorney for our step-dad. They have lived their entire marriage as separate lives, separate accounts, separate money, separate everything. I walked into a bookkeeping mess and my Mom who did not have memory to tell me anything about any account or her financial affairs. It was serious detective work for 3 to 4 months to just get a good idea of what the status was on many things. In this time I was also going through a steep learning curve to get up to speed on Medicare, VA benefits, investments, pensions and retirement accounts, FSA accounts and many other things. Nothing had been done in regards to planning for medical events, no advance directives, no will, no discussions about the house or facilities.
I can say now, 9 months later, we have so much in place and have had several tough discussions about what their wishes are going forward. We are still not to a point where we know 100% what my step-dad’s new normal will be. We have a surgery to get through to see how he either heals or stays the same, then we can have more conversations and make more decisions.
It is so important to be prepared in some ways not just for yourself but for your family if they will be involved. I was left to do a full MRSA clean of the house after my step-dad went to the hospital in May. In addition he is somewhat of a hoarder in his area of the house (2 huge rooms) so there were some other issues that needed to be addressed along with the MRSA. MRSA Sepsis clean up of a house is a scary thing that looks like a slow motion space movie, men in suits with respirators fogging hospital grade chemicals to kill anything bacterial,viral, or otherwise. It felt strange to be sitting on the couch with my capris and slippers, reading the new Magnolia Journal while watching bio haz-mat clean the infection from our lives. In those rooms were the missing file folders of financial information for my mother that my step-dad had tried to handle for her over the past year or so prior. Needless to say it was a mess of a situation.
As women we have so much stress on us in the world but we also need to be on top of our future. Asking the hard questions early and documenting everything can save yourself and your family a lot of work. We will be posting a three part mini series on Aging and Action to followup this blog post. Resources, What you need to Know, Medical Actions, Money matters, Retirement/Property and Investments and Final arrangements action lists.
Next Posting in the series will cover the basics of getting organized and how to approach getting things in order for yourself or for a family member. Whether you are a caregiver or just wanting to get things in place for the future, you will find the information beneficial and it will save you a lot of time if things change suddenly.