Our New Normal in the Grip of Corona Virus

Day Seven of Social Distancing

- We are separated from our grandkids, which is very painful. We Facetimed with Charlie (age 4) and Luke (age 4 months) yesterday, but it's just not the same. I bought a book (Tales of Desperaux) and had it shipped to the girls (Lila 8 and Rose 7) - when they get it I plan to read a chapter a day aloud with them. We'll see how that goes! We wanted to watch Charlie so he wouldn't go to day care, but Matt and Ashley are just keeping him home instead. It's a blessing that they can work from home! Elyse and Jeffrey are doing the same, because their nanny has her own family and worries. It's a mess!
- Since I'm not going anywhere, I spend a considerable amount of time on the phone with friends.
- Where are the tests? Jessica became symptomatic a week ago, and could not get a test through her doctor or otherwise. Fortunately, she is better, but Casey and Dave have all self-quarantined along with her. It hasn't been a year yet since Dave was in lung cancer treatment, so he is compromised. President Trump and his "greatest of all time" team of experts have daily press conferences where they say millions of tests are on the way, but they have not made it to Gwinnett county. In the meantime, the entire NBA has been tested...apparently you can get tested if you are rich. Life in Trump's America! Rita Wilson and Tom Hanks were diagnosed in Australia, where he is working on a film...they got it in the USA but couldn't get a test until they got to Australia, where they are readily available. Also, Jordan, a chef for Hilton hotels, just got furloughed because there is zero business in the hospitality industry. Many states have closed all restaurants and bars, but not enough. The malls all just closed yesterday. America is soooo not great!!!!
- My understanding is that once you get the virus and get better, you cannot get it again. It kind of makes you wonder....maybe it almost be better to get it??? Just sayin...
- In the meantime, spring is here in the south, and it is beautiful outside. I've spent some time in gardening therapy, which helps a bit.
- Mom's entire assisted living home is on quarantine, and so far everyone there is healthy. All we can do is wait.
- We've had to cancel our Mediterranean cruise in May - this virus may last until July they say. One possible bright spot is there are only 10 cases in Mexico! Perhaps this virus doesn't like it hot! Or perhaps they don't have testing either. 
-At any rate, I feel fine and Bill does too. Every sniffle or sore throat is a worry though.
- WE ARE IN A ROBIN COOK OR STEPHEN KING NOVEL!

So hard NOT to despair for our country

As a country, the US van has driven to the brink and is dangling over the edge. We are more divided than ever, as evident by the Kavanagh hearings. When Dr. Ford's allegations came to light and she was scheduled to have her say to the Judicial committee, many of my friends had already concluded that she was a  "liberal operative" who would say anything to ruin this good man's reputation. Then the hearing began with what appeared to be a miracle. She was humble, kind, apparently nonpartisan and BELIEVABLE. In comparison, Mr. Kavanagh's testimony could not have been more of a contrast. (Just watch Matt Damon's portrayal on SNL, which is funny as hell and eerily accurate.) He came across as arrogant, aggressively scary, and worst of all, extremely partisan. Not an admirable quality for a judge to the HIGHEST COURT IN THE LAND, who we all hope will be at least somewhat unbiased.  As my mother always said, "You only have one time to make a first impression." I had never seen either Dr. Ford or Judge Kavanagh speak before, and they made very strong and opposite impressions to me. In spite of her compelling testimony and the judge's angry rants, late in the day it appeared that the Republicans who held most of the cards were still going to vote for his nomination. Then, a second miracle - Jeff Flake agrees that the FBI needs to investigate further. The president and Senate leader allowed for a "limited" investigation. What does limited mean? They were given one week to investigate, and were instructed on what they could and could not investigate. In the meantime, our president, who had initially said he would allow the FBI to do their job, angrily denying that they were trying to direct this investigation, went out on the road complaining to his "base" (oh how I hate that word) about Dr. Ford's "unfair" accusations. So, let's just call a spade a spade - this FBI probe is just a bandaid on a compound fracture. It might look like some action is being taken, but let's not kid a kidder.This is a sham to appease the few people who have the power to deny this man's appointment. Another thing my mother used to say was "I was born at night, but not LAST NIGHT!" If Judge Kavanagh wins this appointment, the red white and blue van will crash to the rocks below. And the radio will broadcast as the van free falls, "The stock market rose again by 50 points."

Recap of the past 6 months

Since July 24, Bill and I have done our best to obtain the best care possible for Mom and Dad. There have been many more bumps in the road than we would have liked - here is a recap of our efforts in the last 5 1/2 months:

• Locating a residence that would provide appropriate care for them that was near to both us and Dave and Casey (Delmar Gardens)
• Convincing Dad to give a move to Georgia a try
• Coordinating the move on July 24 (thank you to everyone of you who helped this happen). Completing extensive paperwork that was comparable to a first mortgage closing.
• Working with the staff at Delmar Gardens to help them acclimate as much as possible
• Dealing with Dad's long hospitalization and confusing diagnosis (UTI? congenital heart failure?)
• Dealing with Mom who was separated from him for the first time in 63 years of marriage and was increasingly agitated and upset being alone
• Learning that Dad would not be able to go right back to Delmar Gardens until he went to rehabilitation, only to learn further that no rehab center would accept him due to the fact that he had been restrained in the hospital
• Scrambling and calling anyone I could think of who might suggest where he could live as the hospital was pressuring us to get him out, and saying we would be "private pay" if we didn't get him out of the hospital
• Learning of Hope Memory care through Senior Provisions, who said they would take him with little question and who accepted him THE VERY NEXT DAY  (more paperwork)
• Keeping Mom company at Delmar while she was separated from Dad, especially at bedtime when she was the most upset and unable to settle
• Moving Mom in to Hope in a week's time
• Learning that Mom climbed out of the window after one week and that Hope recommended she be admitted to Eastside Behavioral Hospital to be medicated for her safety and peace of mind - she was there for two weeks
• Signing up Dad for Embrace hospice for additional support for his congestive heart failure. Embrace provides additional services to compliment those provided by Hope, including providing equipment such as hospital beds, wheelchairs, diapers, cleaning supplies, weekly chaplain visits, bathing and dressing services, and weekly visits and care from a registered nurse who specializes in palliative care. All of this is paid for by Medicare.
• Meeting with an attorney who specializes in qualifying veterans for VA "Aid & Attendance" benefits in order to help them receive these tax-free benefits. This required a great deal of paperwork, most of which is completed, but am still waiting for the physician form to be completed by Embrace Hospice.
• Returning Mom to Hope after 2 weeks and trying to get her medications regulated so she was more comfortable but not "doped up"
• Signing up Mom for hospice for additional support.
• Dealing with Mom's unexplicable decline in December due to an apparent medication mixup. She has improved a great deal
• Meeting with Hope and Embrace Hospice representatives to try to improve communication between them, each other, and with the family.
• Hiring Sam as a sitter to help out with Mom and Dad while we were out of town for 10 days.

•  

Questions for Attorney

Medicaid process - talk us through
Status on VA - will move to new facility affect this process?
Kelsey Larios - Hope contact for financial form
Discuss move and concerns

Another day, another fresh hell

So today was ALMOST a good day. My sweet sister-in-law took over today with the folks, taking mom to see dad in his new place. I guess they had a lovely afternoon, but as she was trying to leave Mom in her apartment at the memory care, mom got extremely upset and begged to go home with her. So my sil called me to ask if I thought that was a good idea. My husband, my HERO, got in the car and went over there to calm Mom down. This is just dreadful.

Tough Decisions

Here's an open letter to my family:

I would like to arrange a tour of Hope Memory care when Matt and Steph are in town next week. I was thinking perhaps Thursday (10/26)  late afternoon, so Dave could come by after work? Maybe 5? or 6? I think that Tammy would meet us whenever. I want you to see the place and hear her "pitch."

I know we all agree that the ultimate goal is to have mom and dad live together forever. We have a tough decision to make in the next 30 days - whether to move Dad back to Delmar or to move Mom to Hope Memory Care. There are pluses and minuses on both sides. Here are a few:

Delmar Positives:

•  It is beautiful, and mom and dad have adjusted to life there. 
• The new activities director is young and energetic, and trying to increase the amount of stimulation the residents have there. 
• Many of the staff members are caring and competent. We love Donna and Tiffany. They are awesome.
• If  M&D stay in memory care as they started out, it is less expensive than Hope. 
• They do have Medicaid rooms in skilled nursing, but I have been told from many sources that they don't extend that privilege to dementia patients. This means that as they use up all their resources, they would sign over the pension to Delmar Gardens and get a room until death. I will be checking.
• It is closer to both us and Dave & Casey.

Delmar Negatives:

• I'm not sure they have a true "age in place" philosophy - meaning, they are committed to allowing both Mom and Dad live there until death. THIS IS VERY IMPORTANT. I am going to request a meeting with Kelly or Jennifer (the head honchos) to see if they can give a written commitment to that. If not, we could be waiting for the other shoe to drop and be scrambling for a place to put them. I'm also not sure they can guarantee a place for either of them in skilled nursing, next in line below memory care.
• If Dad moves to skilled nursing at Delmar or we have to hire additional sitters (as Delmar would have required for Dad to return right now), costs will go up astronomically. Ad to that the fact there would be LESS care than they get now for much more money. It would not be safe or affordable. I don't think this a viable option.
• Per the hospital's request, Delmar did assess Dad  to see if he could return as he was being kicked out of the hospital, and their requirement was to send him to the mental hospital for a "geri psyche" (geriatric psychiatric) assessment. He would have been hospitalized 5-7 more days, and they would put him on more meds to "regulate" his moods since he had been trying to get out of bed and had been in restraints. Restraints are not allowed in Assisted Living. Now I am not against mental health meds, but I don't think Dad needed that. The doctor told me he had a UTI, and that could have been why he was trying to get out of bed. Makes sense to me - if you've ever had one (as I have), you feel like you have to pee all the time. Misery.
• Donna, who runs the memory unit at Delmar, told me many times since Dad's hospitalization that Dad's size is a problem. She said she can't run the risk of her staff members hurting their backs to handle him.  She told me that if he fell, they would call 911. That means the paramedics come out and lift him up. I've been told that they won't do that forever. Doesn't seem like a solution. Up until now, Dad has been able to make it to the bathroom with great difficulty (as you know back at the house he did too). Now he can't toilet alone. And they leave them alone a lot at Delmar.
• The way the memory care unit is designed, there's a lot of walking at Delmar. Yes, there are people in wheelchairs, but the policy is they need to ambulate themselves. And they need to be able to transfer from chair to toilet and back. Dad cannot do that alone at this time. I hope this skill will return, but just don't know.

Hope Memory Care Positives

• The entire building is devoted to memory care. Unlike Delmar, they divide the population by their levels of dementia. Dad is currently in the only area that had an opening - an area called "Wandering Brook." People there are "wanderers." They wander all around the unit. They know this is not where Dad needs to be, but that is where the bed was, and we had a bind. The insurance was going to stop paying for Dad's care, and rehab had rejected him since he had been needing restraints. I will be forever grateful to Hope for their willingness to take Dad IMMEDIATELY with little questions asked. Today, Mom and I toured the "Sunny Surf" section - where Mom and Dad belong. I wish you had seen Mom. She spoke with every resident, introducing herself and chatting. It was lovely to see.
• Mom and Dad CAN age in place at Hope. As long as they are not on a trach or feeding tube, they can stay until death.
• Dad's size is no big deal to the staff at Hope. They told me they have a man there who weighs 100 pounds more than Dad. Wheelchairs are also not a factor. I have witnessed them help him toilet, with the thought that Delmar would not be able or willing to do that.
• All activities at Hope are for the Hope residents, unlike Delmar, where many of the activities are limited to the IL and AL residents. They have outings too, something not open to Delmar memory care residents.
• The entire building is one level - no elevators. It is very accessible throughout.

Hope Memory Care Negatives

• It does not have the amenities of Delmar Gardens, which I have heard described as a "cruise ship on land." No beautiful grounds, swimming pools, putting greens, beautiful dining rooms (although Mom and Dad only eat there with us).
• Yes, there was a urine smell in Wandering Brook, and yes someone had just peed on the carpet (which is going to be replaced soon). But that is not where M&D will be staying, and I was there for 4 hours today and noticed no smell.
• It is more expensive than Delmar's current plan we have. However, if they go back to Delmar, the prices will probably increase a lot, and the price at Hope could be actually cheaper.
• It's a new adjustment for M&D. I don't like that either, but I think they will adjust the same away as long as they are together.

I just want you to know that I went over to Hope to sit with Dad through breakfast, and Bill picked up Mom and brought her over to visit Dad and see the place. They were sitting together holding hands, and we left for a few minutes to pick up some supplies (Dollar General is right next door). We walked back in, and Mom greeted us with, "So am I moving in here? Because we just want to be together." She really liked the place, and I am confident she would fit right in. And Dad is good as long as she is with him. He told me before I went to Indiana, "I don't know what I would do without my wife."

Unexpected Zappos Encounter

I'm typing this with tears in my eyes. Back story: I ordered a pair of LARGE slippers for Dad from Zappos. His feet are swollen with  lymphedema and the only shoes we can get on his feet are his tennis shoes which are barely closing. So a friend recommended this brand (Old Friend) and I tried a pair of 15 wides but they were too small. I love the Zappos company - the nicest friendlist people, so instead of returning via internet I called to talk to someone. The lady that answered - Ellie - was obviously from a different country by her accent. We had some miscommunication because she thought I said I was returning these shoes for my daughter.  She said something like, "I'm sorry these didn't work for your daughter" and I got a bit prickly and said, "They are for my 86 year old father - yeah that would be a funny story to tell your coworkers about a daughter with size 16 shoes!" Anyway, she proceeded to tell me - very nicely - that she envied me that I had my father in my life. Her father has not spoken to her since she got pregnant and had to drop out of college. He told her she was his failure. I was shocked. I asked, "How old is your child now?" Her answer: "Twenty-one." I was so embarrassed and humbled by my initial reaction. The trite statement is so true that you NEVER know what someone is going through.