~window - Stanardsville, Virginia~
I've been in Virginia again for two weeks - visiting my Father in his Memory Care Facility, beginning the painful process of deciding what to do with my parent's possessions - and once again, photographing new places (new to me that is) in Greene County, Virginia. I realized yesterday, while wandering down Octonia Road for the first time, that I'm desperately and frantically traveling the roads of my Father's childhood - as if I'm trying to learn all that he has lost.
Each visit presents new hurdles - emotional and otherwise.
My Father didn't remember who I was when I first visited him. This is the first time that this has happened (that I was aware of). However a few days later he said "Hi Pam", and that sure felt nice. I know he is comfortable with me, as he is with those he has a sense of familiarity with... but he has been quiet this visit, not initiating conversation and responding with few words. Many evenings we have gone out to the front porch of where he now lives - cooler now in late September - and we just sit quietly, and often I hold his hand. He has anxiety, often he clasps his hands together tightly - and so I hold one of them in attempts to break this pattern. I often wrap him in his favorite UVA throw, and he wears his orange hat (he rarely wore baseball caps prior to his dementia diagnosis, now they have become his security blanket).
He no longer smiles very much, but sometimes he still does. He is turning more inward.
A few weeks ago he had shingles and a urinary tract infection all in the same week - and it was hard on him. He still has a lingering rash on his face that is slowly (too slowly) clearing. Shingles are terribly painful, and he said little about the pain (a side note: most dementia patients do not tell you when they are in pain or where it hurts - so you have to look for other subtle signs - it is not because they don't feel pain, they just aren't able to express what it is any longer).
He turned 80 a week ago. I made cake and cupcakes, enough for the residents and staff on his hall - and we had a small party. A few other family members came. He loved the cake (his favorite - a yellow cake with chocolate frosting - made using the same recipe that my Mother always used) - I think he had two pieces of cake and three bowls of ice cream. It made me happy that he wanted more cake and ice cream - it is the simple things now, whatever he enjoys is fine with me.
He is no longer walking. His body seems to have forgotten how to stand.
Dementia lessons learned over the past two weeks: (1) before your parents either pass away or lose their memories, ask them where the septic tank is in the backyard of their home, and (2) when guests come and exhibit poor (ill-informed) dementia etiquette, it's okay to ask them to leave (and yes, someone needs to write a book on dementia etiquette - and soon).
During my last visit (in July) - the AC Unit in the house died (it was old, and we replaced it with a new unit) - so to top it off this visit, the septic tank backed up in the basement of the house. Of course the septic guy asked me where the tank was - and when was it last pumped out... two questions I couldn't answer. Now - I know where it is, it has been pumped out, and a riser has been added so this won't happened again (in the near-term, my brother and I are going to rent the house).
As for guests with poor dementia etiquette - all I can say is that there are many individuals who are either scared of being around someone with dementia, there are many who feel awkward - and there are many who are simply clueless. When I arrived to visit my Dad a few days ago, he was just laying down to take an afternoon nap (we have someone that comes to sit with him for three hours per day, she was there with him when I arrived). Shortly after my arrival, a man (old family friend that I don't know) came to visit Dad - and was oblivious to the fact that Dad was very tired and wanting to sleep. Instead he stood over Dad in his short bed (and this man was tall) and he began to tease Dad about how he was going to take his blanket. Dad said 'no' and looked a big frightened, and the man simply continued, thinking he was being cute, or funny or whatever. My poor father actually looked fearful, and I'm sure he was afraid that this man would take his blanket, and that he would be helpless to stop it. So I didn't let this go on for long (two minutes maybe?) and I looked at the man and said that he needed to leave because Dad needed his rest. He looked insulted, said "well, I've only been here five minutes!" and he walked out. Good riddance I say. Visitors need to understand that the old jokes, the 'good natured ribbing', etc - can often be frightening to a dementia patient who is viewing the world much more literally. I have no doubt that my Father was scared that this man was going to take his blanket, and I have no doubt that this man thought he was being funny. It was two painful minutes for me, as someone who wishes she could protect her Father from any additional (or unnecessary) pain.
So please remember - if your parents have a septic tank, do you know where it is? And please, don't frighten the dementia patient with your lame jokes, okay?
I've been packing a bit this trip. Sorting is more like it. I did today take a few boxes of things - my Mother's good shoes, some small things, Dad's winter boots - and donated them to a thrift store that helps those in need in Greene County.
These were the first things removed from the house, other than some photographs. It is the beginning of the process, an important hurdle - but I felt awful doing it, as if I was betraying my parents. I know that this isn't the case at all, but was still hard. We plan to do a 'Vacation Rental by Owner' thing with the house - so many things will remain. We aren't ready to let the place go, and we may need to sell it in the future for Dad's care - there is much that is uncertain.
I was rattled a bit earlier this week when a staff member at my Father's facility mentioned 'hospice' - but fortunately it was followed by a much needed, educational conversation. Dad is still eating well (and on his own) so we aren't there yet. I was relieved - all of this has been happening so fast: in his home until last April (with 24/7 live-in care for the past four years), broke his hip, two months in rehab to heal, and now four months in a memory care facility. I need to catch my breath.
I've spent time over the past week in my parents garden - my Mother's garden - three acres of mostly oak forest with gardens in the middle. It has had minimal care since my Mother left us (just over five years ago) - most visits home since then have involved caring for Dad and little else. Today I cut down a row of butterfly bushes that should have been cut back three years ago, and it felt good to make some progress in the garden for a change. I have fleeting thoughts of moving back to Virginia and the mountains, leaving South Carolina - coming back and tending this beautiful peace of land. But then I go back to South Carolina and I'm greeted by salt air and I can't imagine leaving.
For now, I head up to the DC area tomorrow for work for a few days, then back to spend a few more days with Dad - then I head south again for awhile.