(my mother and her mother "granny")
Where do we go from here? Mom was bright and outgoing a social butterfly involved at one time in both her home and community, even after retirement she remained active in the church and worked as a senior companion for United Way. How would I inform her she was no longer safe to drive or to continue to live independently (the first would be much easier then the later...as we will all soon see). The year was 2003 and mom now had stop driving for a couple of years, and all of our lives were about to change almost over night. Our pre-teen was now a teen, mother's dementia was progressing faster than ever, I had changed jobs after seven and a half years and again found myself in a management level position, still had very little or no support system in caring for mom, and somewhere in the mist of all of this I was a wife. It's funny looking back now I had one person who would not come home (our teenage daughter) and another who kept wandering off from home (my mom) it was truly a trying time in my life. I did not know which way to turn from day to day, I was overwhelmed.
I did not have a single person who could offer me any advice or direction so I reached out to our local Department Of Human Services and literally cried out for help. I was working full time managing two different Physical Medicine departments at two totally different hospitals, handling all my mother's affairs including but not limited to shopping, paying bills, providing outings, cleaning her house, and responding to calls from the neighbors that mom was walking in the rain up and down the street. I moved mom into our home for six months (at least I would know where one person was) and it worked for a while; and yes there was an adjustment and it wasn’t the big stuff but the really little things. I remember one night being awaken by the alarm system at four in the morning mom was "just looking for the restroom" and opened the front door or listening to her talk to herself or sing at the top of her voice in the middle of the night, or getting up early to get her dressed and yourself before going to work (the true role reversal), changing diapers, more frequent washing and modifying the house to allow aging in place. Now remember I still had a teenager (whom I'm sure should have qualified for some award for having the most car accidents in history in the first 12 months of driving) I stop counting after 8 or 9. After six months mom seemed to be doing well again, almost back to her old self well her new old self and we agreed that she could once more be managed in her home with help so I packed all her belongings and took her home. I went back to checking on her before work and after and all my other duties (again without support), DHS did approve a home health aide to assist with light meals and housekeeping three days a weeks, the only problem was she was not qualified to work with individuals with dementia and after coming to the house two weeks and asking my "if she were hungry" which she would reply "no" instead of just getting up and cooking and restating the comment to "it's time to eat" mom just stop answering her door. I had told my mom to never ever open her door to a stranger. I was blessed to get my mother in an adult day care five days a week and boy was that the high light of her life she looked forward (although not at first) to going everyday she actually looked forward to going to bed early so she would be refreshed in the morning.
She enjoyed going to "the center" as it would be referred to later, so much that she would actually sit on her four-wheeled walker all day from 7:30am till 7:30pm on Sat. and Sun. waiting for the van driver to pick her up, refusing to eat or go back in the house to toilet; (need I say more). I was informed by a neighbor (they would call me each time and I would talk her back into her house) she had wonderful neighbors. I always had to out think mom and often this was not an easy task, but we agreed that she would remain in her house and that the van driver would give her a call each day and then he would walk her to the van; therefore she would need to wait by her telephone as not to miss his call. A great ideal is only born once, she would now remain in her house and all was again fine, at least for now. Monday through Friday she received breakfast and lunch at her center and I would provide dinner every night, the only meals we would need to make arrangements for were on the weekends. So I thought that will be easy there are only four weekends in a month and between my three sisters, myself and a niece we could actually pull this off; everyone could sign up for which ever weekend they would like and since mom had no dietary restrictions she could eat whatever any of us had prepared that evening for our families for dinner; no big deal right....WRONG. One of my sisters even commented "the human body can go up 48 hours without food if the person has water" true, but who wants to, I continue to this day to be amazed.
I made a point of always having snacks and deli items in the house after disconnecting the stove for her safety and making several other home modifications to ensure her safety. Every few months would bring more and more challenges as her cognitive status declined. I was reading and researching anything and everything I could about different forms of dementia; Time magazine articles, HBO specials, and multiple medical articles. I listen closely to the news report which informed the world that our late President Ronald Ragan had been diagnosed with Alzheimer's. Once I asked mom's neurologist if she could order a PET Screen the newest and most efficient means at that time, to look into the brain and its structures non-post mortal and she informed me "if you want to see Alzheimer's just look at your mom". I continued day and night making daily trips over to mom's house to make sure she took her medication, ate and most important was safe. I often thought what bright mind came up with a "memory pill"' for a person who cannot remember to take a pill; thank God today I believe they have developed a patch. My objective was to allow mother to remain in her home for as long as possible; I decided it would be best if mom had someone live with her rather than she being forced to leave her natural environment. I had only one sister who came to mind to take on such a task as this; a person who was easy going, caring and selfless willing to do anything for just about anyone, the only problem was her and mom had been estrange a number of years, but it was worth trying. Keep in mind I still had a teenager (who was growing out of control, fast), a husband (who was waiting yet again to get his wife back), and me who had lost 15 to 20 pounds from just pure stress (I jokingly even today call it the Alzheimer's diet). Dementia was kind in some ways because mom could not remember what she was so angry with my sister about or even that she had been angry. She was not so keen on having some strange person moving into her house though; she actually got herself a chair and blocked the door we cleverly just waited till she fell asleep and moved my sister in right over her head, man were our arms sore the next day. Every day was new for mom so the next day when my sister called her in for breakfast it was like she had just been there all the time; each morning was filled with hot coffee, long lost hugs, and a lot of love. I would remain very much involved and a support system for my sister and she for me. This arrangement worked great for the next couple of years, but things were still about to change and what a change it would be.