It's Been a While and a Lot Has Happened...

The day following my last post, Jim had an episode where he was severely agitated. Fortunately I had my phone and key fob in my pocket. He didn't know who I was, but was very angry at me, ordering me out of the house. So that is just what I did. I drove around for about 5 minutes, hoping that by leaving and then returning it would break the cycle. As I came driving down our driveway he opened the front door and shook his fist at me, yelling for me to "Get out of here!"

Heeding the advice of Jim's gerontologist, Dr. S., I  pulled out of the driveway and parked down the street where he could not see me and called 911. Obviously it was not safe for Jim to be home alone, and it was not safe for me to try to enter our home.

I was very careful to convey to the dispatcher that Jim had advanced dementia. He assured me he would pass this along to the responding officer. I was advised to wait in my car with the doors locked, out of sight, until the police arrived. And that is exactly what I did.

The police officer that arrived was wonderful. He spoke with me first to get a little background information. I made certain he was aware of the recommendation of Dr. S. that he be taken to the ER and then admitted for stabilization and medication adjustment. We then both walked down the driveway; Jim met us at the door. It was interesting to see the officer's reaction. I could tell he was shocked by how relatively young Jim looked, given his very advanced dementia.

Jim was still agitated towards me, but respectful of the police officer. At one point the officer indicated to me to back away; so I did. Somehow he managed to get Jim to agree to go to the hospital. I remained in the background, not wanting to interfere with how well the officer was managing the situation.

Fortunately I had my packet of emergency medical information ready to go. I was able to give a copy to the ambulance crew and then the ER doctor and nurse. Everyone that evaluated Jim in the ER was very curious about "our story". I"m certain it is because Jim looks so normal and looks too young to have such advanced dementia.

Jim was admitted and was in the hospital for about a week. While there he was more confused than ever. The doctor asked him his name and he said he couldn't remember 😢 That hit me really hard. I know that hospitalizations and illnesses will increase confusion when someone is vulnerable like Jim. But it still just broke my heart. I cannot imagine how he must have felt. He had no idea where he was, or even who he was.

He was very glad to see me and seemed to know who I was when I would visit him in the hospital. He had  an aide in the room at all times. At one point he went for about 48 hours with NO sleep. Finally they added a sleep aid and he started to sleep at least a few hours every night.

While he was in the hospital I would visit 3 times a day, staying about a couple of hours each time. It was a difficult week as I struggled to figure out what I was going to do. I was exhausted and worried sick about Jim. What was I going to do?

The doctor at the hospital (who also happens to be a gerontologist) told me that there really were no further adjustments that they could make for Jim's medications. There might be a little tweaking, but nothing that would address the severe agitation that Jim was experiencing.

In a very kind way, he told me he was concerned about my well-being and that it was not safe for Jim to be at home. He shared with me a few stories of caregivers who had been hurt by a spouse with dementia. I listened carefully to what he had to say.

Dr. S. called me after she had spoken to the doctor at the hospital and essentially told me the same thing. She agreed that maybe there might be some little changes that could be made in his medications, but that his case was so challenging, she did not believe it was safe for him to live at home with me.

Toward the end of the week the hospital social worker told me that he met the criteria for needing some physical therapy, given his increased weakness and his problems with balance. She suggested nursing home rehabilitation and pointed out that this would buy me some time while I figured out what I was going to do.

Medicare picks up 100% of the bill for nursing home placement for up to 21 days. But only if there is a skilled nursing need (such as PT) and only for as long as the person shows progress. Once the person plateaus, the funding ends. At that point it becomes private pay for $144,000/year.

It's a long story, but I almost got tricked into accepting placement at one of the worst nursing homes in the area. Thanks to knowing someone with the right connections, Jim was accepted at a nursing home for short term rehabilitation. This particular nursing home is considered one of the very best in the area.

So, that is where he is, at a nursing home for rehab. He is getting PT. Once he plateaus and medicare payment stops, I'll need to have a plan B. I'm working on that....

Now for the part that is almost unbelievable. Jim is happy and content. He has no idea where he is. He is always happy to see me when I come to see him. He never asks "where were you?". He never asks to go home. He loves it.

The unit is locked, and everyone on the unit has dementia. The shape is rectangular, so that people who like to walk can just keep walking and remain safe. There is a very large courtyard in the center that folks can enjoy when the weather is good.

They have activities available from 9:00 AM to 9:00 PM, for those who are interested. Everything from ice cream social, movies, sing-a-longs, basketball (modified/from a chair), current events (only happy ones!), coffee hour, and of course don't forget happy hour with non-alcoholic beer and wine, cheese and crackers.

The staff love Jim. He is without a doubt the youngest person there and one of the more mobile ones. The staff are amazingly good with folks. Kindness and gentleness prevail. As I look at how active Jim is and how much he loves it, I realize that I could never provide for him like that at home.

So, what do I do.......I'm in the process of figuring that out. What's best for Jim is top priority, but the financial piece has to work too. I've met with our attorney (the one who did our power-of-attorney, health care proxy and wills), and I have another appointment with her later this coming week to talk more about what options I might be able to pursue legally, taking into account the financial implications.

I thought I would share with you something personal. A few weeks ago I realized that I was feeling very overwhelmed and very, very sad. I found that I was crying a lot. Usually first thing in the morning and late in the evening. Somehow I would manage to pull myself together for the day to make sure I was there for Jim.

I was smart enough to realize that things were going to get worse, not better, and that I should get some help for myself. Every time I have seen Dr. S. (she is my doctor too), she always asks me if I am doing OK, and she reminds me that depression is very common among caregivers. I always reassured her that I was fine, but that I would let her know if I needed some help. Well, the time had come.

So, I made an appointment for myself. Dr. S. was wonderful! She told me that she could tell I was under a tremendous amount of stress. My blood pressure has always run very low my whole life. The top number usually is barely 100, and the bottom number in the 70's. At this office visit my BP was 130/88 and heart rate was 98! I guess my body was trying to tell me something.

She started me on an SSRI. It usually takes a little time before you notice an improvement. I am very pleased to tell you that I feel so much better! I know that Jim and I are in a difficult situation with no easy answers, but somehow I now feel much better equipped psychologically to handle what ever comes our way.

I remember telling Dr. S. that I wasn't anxious, just sad. Boy, was I fooling myself! The difference is just incredible. I saw a very good friend of mine yesterday. Amy and I have been friends for many years. Her life is incredibly busy for a lot of reasons, including that she is younger than me and still works full time. So we have not seen each other in a long time. But we email, text and talk on the phone to keep in touch. It became especially hard to see each other when Jim's condition worsened and I needed to be here to provide around the clock care.

When I saw Amy yesterday she couldn't believe that I didn't look more stressed! And she is right. I really do have a sense of calm, knowing that I can control only so much; I have to let the rest go knowing that I will deal with it the very best I can.

So dear readers, thanks for reading this very long post. There is a part 2, which I will post later in the week. I include all of you when I think about all the wonderful support I have on this journey with dementia. And for that I am so very grateful.