I don't know if anyone noticed that I did not write a blog entry last week. I hope at least one or two people missed me.
I had no energy to write last weekend. My husband's Alzheimer's Disease worsened significantly. He was more confused and was not walking much at all. We had to start him wearing pull-ups because he was unable to get himself to the bathroom. He was waking me every hour or two because he could not get comfortable in bed. I was having to try to lift him which was nearly impossible. He would become totally rigid and could not help at all. I no longer have the strength I used to, but I'm not sure I could have ever lifted him in that condition even before FTD. Add in the confusion of FTD, I could not even figure out which way to move him when he would say he wanted to be further up on his pillow. It never even occurred to me to simply move the pillow.
On Monday, his condition was serious enough, my sister and brother in law helped me take him to the hospital. That was an adventure in itself. Here was this man, drooping in a wheelchair, not being able to speak much and totally confused. Yet we waited three hours until he was seen. Then we waited five more hours until they moved him out of the emergency room. The hospital was low on rooms so they decided he could go to an observation room.
The problem of being in an observation room is that Medicare and other insurances consider observation an outpatient situation. That means that for the CAT scan and MRI of his brain will cost us $500 each as a copay. If he was in a regular patient room, both would have been covered under his hospital stay. I hope those are the only two surprises.
There are so many problems with not only medicine today, but with hospitals and insurance companies. The entire stay was extremely frustrating because an observation unit is not equipped for the needs his condition warranted. Of course the staff got just as frustrated as I did. I had to argue with doctors who actually knew less about dementia than I do.
I have still been unable to get a report on the brain scans. I had an appointment with our family doctor on Friday and she was livid that she had not received them either. In this day of electronic records, she should have had access to his entire hospital stay but did not.
The next problem cropped up on Wednesday when the hospital wanted to send him off to rehab. We happen to have a fantastic rehab hospital in our town and I had no qualms about sending him there, knowing he would get better care than he was receiving at the hospital. I should not have been surprised when the insurance company denied the transfer. (Just today I received my copy of the denial and their reasoning was that his condition did not warrant it.) The next recommendation by the hospital was to transfer him to a nursing home that offers rehab treatment. He ended up being sent there and is receiving one rehab session a day. If he had been in the rehab hospital, it would have been three sessions a day for a total of five hours.
Don't get me wrong, he is being treated very well in this nursing home and is making progress. My grievance is that this decision was dictated by some clerk sitting in an office at the insurance company who was looking at his medical record and made this decision. They did not discuss it with hospital personnel, much less a consultation with the family. This seems so wrong to me.
Let me get back to FTD now. My limitation from FTD contributed to him needing to go to the hospital in the first place. Then, sitting for that length of time in the ER waiting area was extremely difficult... televisions blaring, people talking, children crying. I was out of control. I finally knocked on the door to the triage area (He had been through there soon after we had arrived.) I explained to the triage nurse how long we had been there and that his condition was worsening as we sat there. I finally asked her (not very politely) if she wanted him to die in the waiting room or if we should take him home to die. Not nice of me, but he was seen within ten minutes. I should also add that throughout this entire period of waiting, the patient advocate kept coming to us and assuring us he was at the highest trauma level and would be seen as soon as possible.
Morale of that story is "Don't stress someone with FTD, you can never tell what they might do or say!"
By time they took him to a room in the ER, I was totally exhausted, could not speak at all without stuttering, had a horrid FTD headache and was crying out of frustration. It didn't get much better for the next two days. He was calling me every two to three hours throughout the entire night. The third day, I knew he was getting better when I begged him to please not call me that night and explained how I needed some sleep. I did not receive a call until 7:45 a.m. and it was the nurse, not him. I was so relieved that he had actually comprehended what I was begging for.
I felt extreme guilt about not spending the entirety of each day there at the hospital with him and for not wanting to answer his calls. I knew he was just as frightened as I was, but I just could not deal with things on the small amount of sleep I was getting. Anyone with FTD who is reading this will understand. We need more sleep so that our brains can rest. Our brains seem to need more than our bodies do.
I also feel guilty because I am very angry with him. Two years ago, when I was frequently falling down the stairs, I begged him to have a stair lift installed. He refused, thinking that $3600 was too much and that I just needed to be more careful. I'm sure you guessed it already, I am having one installed for him in a couple days, before he comes home. I also purchased a rolling walker for him and a few other items to make the house easier for him to live in. A rolling walker is another thing that he refused to purchase for me. The anger level of someone with FTD can be downright frightening so that compounds my guilty feelings.
I have written so many times about the importance of a support team as well as the frustrations involved in not having one. So many of us have experienced our friends and family members running away in droves. I swear they must think dementia is contagious. My support system consists of my sister and her husband. They have been phenomenally supportive. She has been my chauffeur and has shown the patience of a saint with both my husband and me. Her husband spent his entire day on Monday with us at the hospital and kept us supplied with snacks and drinks. Wouldn't you think that the hospital, if they are keeping you waiting for that many hours, would at least offer a bottle of water? He also came over to the house and did a couple tasks that were too overwhelming for me right now. Plus, he did not complain about how much time my sister was devoting to me. Best brother in law ever! Best sister as well!
Now, after I have you screaming that I need to take care of myself if I plan to be able to care for him at all, I am finally listening. I left the nursing home at 2:30 this afternoon, which is Saturday, and do not plan on returning until midday on Monday. He is in the dementia unit at the nursing home so he does not have a phone in his room. I plan on sleeping and sleeping and sleeping.
I also asked our family doctor if she would order home nursing visits after he gets home and she immediately said she definitely would. So, if the insurance company has any compassion at all, I will have at least some help.
When I was diagnosed with FTD, it never occurred to me just how much it would impact every single thing in my life, nor how much difficulty my life would have over and above dealing with my own dementia. FTD controls our lives, impacts everything in them and can make us miserable without even trying. I hate this damned disease. I don't like Alzheimer's Disease and better either.
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