Weddings are rather like babies being born and people dying. One cannot predict when they will happen. Of course, each may be forced to happen at a certain time, but that is not always for the best. And so it was with our son and his bride. They had met in Washington State, while our son was in the Army. They asked us if we would plan a wedding for them because they had already been married legally in Washington but wanted to share the event with family. Her family lived in Vera Cruz, Mexico, however, and did not approve of her marriage to our son, so it was up to us to plan and pay for the wedding.

They wanted to be married during the holidays so more family would be able to join in the celebrations, so we chose January fifth. All the holiday break was spent taking care of Marjorie and Milford’s needs and wedding planning—oh, and Christmas shopping and celebrating.

I remember going to a Sunday School Christmas party at Carmen’s house with Lawrence, Milford, and Marjorie. Everyone was very helpful at the party and we actually had a good time. We had the Sunday School crowd over for a dinner party during that time too, where people remarked, “How are you doing it all?”, and I replied, “God’s special gift to caregivers of energy and antibodies”.

Lots of family came for a Christmas dinner too. We met our other son’s future wife at that time, which seemed like an added element of stress to me. She and the bride of our son who was getting married did not get along. They knew each other from where they lived in Washington State. There was ensuing drama that I definitely could have done without, but being a middle school teacher and having to deal with that sort of thing on a daily basis enabled me to take it all in stride.

The wedding was beautiful and went off without a hitch. I was exhausted, but it was a happy and good kind of tired. We had a wedding planner who was a fellow church member and she really helped. There were some challenges along the way, though. For example, we all wanted to attend the rehearsal and the following dinner, but Milford was not good about going out at night we had learned. And Marjorie did not want to go anyway. We didn’t feel good about leaving them alone at night, so we had to find someone to stay with them. Through trial and error, hit and miss, I had found a woman who worked as an independent private duty nurse. She agreed to come when we needed her, and we really needed her while we were getting ready for the wedding and during the wedding. On the day of the wedding, she came and I instructed her about what was going on and what I expected her to do, namely, get them ready and to the church on time and stay with them during the wedding and during the reception. They were late, but we waited and they showed up in about fifteen minutes. Those were very uncomfortable minutes.

After the wedding and reception, back at the house, relatives visited for a sort of post reception reception. By that time it was evening and Milford was in a foul mood. He wanted everyone to go home and ranted about how all anyone ever does around here is play cards and waste time. We were not playing cards. I did not know about Sundowner’s Syndrome or Sundowning, as it is also called back then, but Milford displayed the symptoms every evening; some evenings more than others. He liked routine, and when special circumstances prevented routine, it was not a pretty picture. He loved children, so I distracted him by calling his attention to his cute little 3, 4, and 5 year old great granddaughters as they played. He wanted to play with them, but that worried me because I wasn’t sure if he knew how to be gentle with them. So I sat with him and focused most of my attention on him until the company left and we could go to bed.

By Monday everything was back to our new normal. Lawrence and I worked during the day, our son Jacob went to school, and Milford and Marjorie stayed home. Now we had a paid nurse in addition to the home help person that the VA provided. And Marjorie had a visiting nurse that came to check her ulcers twice a week, paid for by Medicare. The first couple of weeks of January went by without incident except for the Medicare nurse not showing up once, and the VA nurse quit or was reassigned and a new one came that Milford did not like as well. I didn’t blame him. Who wants a stranger giving a bath?

The paid nurse was expensive, however, and I refused to pay any more money for their care out of our funds. After the wedding, and the previous expenditures we had made on their behalf, our savings were depleted. Lawrence still refused to write a check for anything unless his mother authorized it, and she refused to pay for anything. I asked Lawrence’s brother to help us out, and he asked for a dollar by dollar accounting of what we had spent, which I gave him. He said Lawrence should write a check from their account, but he didn’t. I asked one of the pastor’s from our church to visit us after explaining our financial problem to him. I knew his mother lived with him and I asked him if he thought it was reasonable to expect Mom and Dad Gridley to pay for their expenses while they lived with us. He said it was, of course, and he talked to Mom Gridley about it but she just got mad.

So the paid nurse quit coming. And I was tired. The VA offered to give me respite care for Milford. They said he could stay there for two weeks. I jumped at the chance but I did feel guilty when I was walking away and he called after me. Marjorie was upset with me for taking him there even though she verbally abused him every day. I reassured her that we would visit him often, and we did, but it was rather traumatic each time because he wanted us to take him with us.

February 4, 2008 I came down with the flu. I hadn’t been that sick for years and years. I could not get out of bed and was in terrible pain with a fever. Funny how I didn’t think to get a flu shot when Mom and Dad Gridley got theirs. I learned an important lesson. Caregivers must put their needs first and take really good care of themselves so they can give the services they provide. Lawrence cooked and Mom Gridley did dishes. I was out of commission for four days, and on the second day, Mom Gridley excitedly rushed into my bedroom (where she had never been before) to say: “The VA called and said we are to come and pick up Milford, isn’t that wonderful?!”.

I could not take care of him. I was too sick. I told Lawrence he would have to take care of him, but he refused. So I said, “Then you must take him somewhere where they will care for him”. I hated to say that but without money to pay for someone to care for him, he could not stay in our home. It was too much for just me. In retrospect I wonder if Lawrence wanted his father to go to a nursing home all along. Lawrence never could tolerate the children when they were small because of their ‘germiness’. He never changed a diaper in his life.

We had investigated a few nursing homes before Christmas in case Milford took a turn for the worse, making home care impossible. I had even paid an Elder Care Advisor to give me advice on how to care for Milford. She advised nursing home placement then, due to our financial situation. She didn’t tell me about the home and community based Medicaid waiver, but perhaps that is because it was still fairly new then. I don’t know. In any case, she recommended Thomson Hood and Pine Meadows Nursing Home. We chose Pine Meadows because it was closer to our home. We knew that the best care is given to people who are visited the most.

Someone at the VA, I think, said they would put him in the hospital to help us out. I didn’t understand what he meant at the time, but now I know he was putting Milford in the hospital before his placement into a nursing home so that Medicare would pay 100% for the first 20 days of his stay, and after a certain dollar amount out of pocket per day (the amount varies from year to year) Medicare pays the balance up to the next 80 days. After that personal savings, long term care insurance, or Medicaid must pay. Nursing homes are more likely to accept a new resident on Medicare because they are guaranteed payment. I didn’t realize back then how difficult it is to get admitted into a nursing home. The government limits the number of beds available which allows nursing homes to pick residents at their discretion.

They would not have picked Milford if they had known the future.