I know it has been a long time, but our life just keeps on getting less and less fun as each day goes on. I actually had to look back to see what I had written about already and what of this nutty life I hadn't exposed yet!
First, about Grandma. She did wonderful in the surgery and was released to rehab on the Monday following her surgery on Friday. She had a few hiccups with pain meds and her stomach, but they got that under control pretty quickly. After spending just a little over a week in rehab, she was released to go home yesterday. She is doing wonderful - a lot of pain as would be expected but she is doing a good job keeping ahead of the pain, just like she should. When we went in for the family information meeting so that she could be released from rehab, it was incredible to see what she was able to do. She can actually go up and down stairs, not that she would particularly want to. She walks with a better gait now than what she did prior to the surgery. She is one tough lady - and very determined to recover completely from the knee replacement and I have no doubt that she will do just that.
All of the women in nurse uniforms has been a challenge and has brought one of his "stories" to the foreground as a new favorite. "The boss caught 6 Navy Nurses (angels of mercy, don't you know) in his room on the ship and said....blah, blah, blah" If you want to hear the end of that story, you will have to call K! All I can say, is boy, am I tired of those nurses.
K has been a real pill the past couple of weeks. Last week we had an incident where he refused to stay in the house. I've had to sit in a chair in front of the door before this to keep him in the house at night, but this time it came to a shoving match. So before it could escalate, we went to Lowe's and picked up keyed dead bolts with the plan to have M help me install them on the weekend. But the battle started again as soon as we got back home. So I decided to go ahead and install the locks that night, but while I was working on one door, he was going out the other! I wasn't able to get hold of M to come help me, so I called B, who is staying the summer to help Gma take care of D, and she came over and installed the second deadbolt while I distracted K. We got through it, but it was very upsetting and really left me wondering if I was going to be able to keep him at home like I want to. I think it is possible that he had a fairly rare reaction to the Namenda - agitation. Oh, the things they don't tell you. Thank God for the internet. I cut his Namenda dosage back to the half tab and give it only at bedtime. It does help him sleep and then I can sleep.
Dr Shatz described his walking as a needle in a groove. That's all well and good, but let me say right now - HE DOES NOT HAVE ALZHEIMER'S! (and yes, I am screaming this) All of the available material talks about distracting and redirecting the patient and they will forget the action they wanted and start doing the alternative action. I have distracted and redirected until I have just about spun on my head! But once he decides he is going to do something - HE IS GOING TO DO IT COME HELL OR HIGH WATER.
Case in point, today. I had an appointment to visit with our financial advisor today. K's companion was scheduled to take him out bicycling today. When I started getting dressed and cleaned up, K wanted to know where I was going. I told him I was going to get a mammogram over at the hospital. He has NEVER gone with me when I have my annual mammogram, so I never dreamed that would create a problem. He decided he was going and he wanted to leave before Cheryl got here. I told him no, men are not allowed to go back with women to get their mammogram. But he wanted to go. Cheryl came, with her bicycle loaded on the rack; I had gotten his bike down from the ceiling rack and aired up the tires; they had planned and looked forward to biking together. He would not go with her. I called the office and told them what was going on and they told me to come whenever I could. So I told him I cancelled the appointment. He would not get out of the car. He sat in the car, in the garage, until finally Cheryl and I came in and watched out the window to make sure he didn't take off. When he finally got out of the car, he came in, wouldn't consider going anywhere with Cheryl, sat in the chair with his arms crossed over his chest and stared at me. No way was he going to give me the opportunity to get in the car and go anywhere. So I cancelled the appointment, rescheduled and Cheryl and I discussed how to try again. She said that she had never had a patient she couldn't redirect. I desperately need to talk to our financial guy in light of the Ford buy-out proposal, but I also have to do it by myself and not be distracted by this sh*t. Argggg! Help someone! I am accepting any and all suggestions on how to deal with a 65 year old, 200 pound, 3 year old.
There are times when our situation is scary. Scary financially - after 37 years of planning carefully to provide for our senior years and now all that planning is out the window. Scary physically - he is getting less and less controllable and I fear I will soon have to concern myself with his strength versus my strength. He wins, hands down. Scary emotionally - will we become so isolated by this disease that we lose relationships, even family relationships, as people become more uncomfortable by his behavior. It is what it is. His behavior is not under my control, not under his control, either. This damn disease is robbing us of everything.
Someone on the support board wrote simply, "Today I was a nasty, nasty caregiver." FTD is not Alzheimer's. When I do become overwhelmed sometimes with the struggle, and lose my temper at him, I know I am just normal, but I also know that, at least right now, he remembers everything I say and do. I wish he had Alzheimer's. Even though they forget their family so much faster that the FTDp does, eventually FTD steals the memory as well as the speech. But meanwhile we have so many more behavior problems to deal with; it is tough beyond any one's knowledge who isn't going through it.
BTW, I now have to attend his every walk. It will be good for me eventually, but right now I bought new tennis shoes, wore the wrong socks with them and bruised my toes. Ouch.
All my love to all of my lovies. Mary
