This is our journey through cancer and Alzheimer's. Barb had a rare cancer and passed away March 1, 2012. She did not loose her fight with cancer, she won and laughed in its face till her last breath. She lived valiantly!. Bruce, her loving husband of 50 years and 5 months, has Alzheimer's. I am one of their children, Kurt, and I write this blog not only for them - but for you. Thank you for taking this journey with us and we hope you will feel free to leave comments and thoughts.
Wednesday, January 9, 2013
Changes
When I stepped into dads apartment my nose immediately told me something was not right. Dad was in his chair and I told him to just stay seated. I put my medical bag down, took of my jacket and scarf and looked at the stove. Nothing was on the stove. Oven was off. I peeked inside the microwave disguising my investigating with, "how do you like the microwave oven?" He said it does the job. The microwave was clean. Then my brain started thumbing through the thousands of smells stored in my memory banks. It was urine. My heart skipped a beat. I went to his room, saying, "going I to your room to say hi to mom" (the urn is in there with a photo Robb created for her memorial service card). I pulled back the blankets...clean. Checked the pillow...clean. Checked his dirty laundry...nothing soiled. Then I walked into the bathroom and it hit me as my shoe suddenly made that just-walked-in-something-sticky noise. It was then that I realized I had been holding my breath. I took a breath in...the floor was covered in urine. I cleaned it up.
I sat on the couch as I usually do and I asked the tough question.
Dad, I don't mean to get real personal but I need to ask you if you think you may have some problems when standing up to urinate.
"Not that I know of," he responded.
"I wonder if it would be best for you for now on to sit when you urinate instead of standing. There seems to be a fair amount of urine on the bathroom floor so I'm guessing our aim isn't as good as it was when you were younger"
He agreed. But I know that getting him to do that new habit will be difficult. I've added daily washing of the toilet and floor instead of weekly, to my growing list of duties.
I always have dads feelings of self-worth in the forefront of my mind when talking with him and making decisions for him. I don't ever want him to feel like I'm treating him like a child.
I did my usual tasks...checked his feet. The skin issues on his arms and head. Took his blood pressure and blood sugars. All is well.
I then met briefly with Sue. Sue is the nurse practitioner now a part of the team that is caring for dad. We talked for a bit. I re-iterated to her that no one comes to visit dad without going through me or my sister. The door buzzer does not work to his apartment so he has no way to buzz anyone in. Also the office staff knows if anyone comes for dads they offer them a seat in the lobby and call me. She applauded that safety feature and thought it was a great idea. I was relieved she thought that way. I didn't need her to think, "here we go with an over-controlling caregiver". The whole team knows that I am a part of the team and if this program is to succeed for dad, it must have boundaries and expectations. They appreciate that attitude as usually they are left to do it themselves. They don't always know what's best for the individual.
So far in the team is Dagmar (social worker), Sue and Joan, (nurses), and myself. We will be adding a new doctor, podiatrist, optometrist, dietitian, and dermatologist in the next two weeks. This team is a part of what is called Community Care. It's a county program funded through Medicare. It costs me $160 a month but so far it's worth it.
Sue did an evaluation of dad. Her vitals matched mine (which is always nice to hear!). She gave dad a few oral tests. I'll get her written evaluation on Tuesday. The test support what the rest of the team knows:
...dads short term memory capabilities are pretty much gone
...He's happy and feels good and
...he feels that his memory is as good as anyone else his age
...although he missed mom, he's not in a hurry to be with her
We she asked who in his life he has that he can trust and turn to for problems, he immediately said, "Kurt and Robb and my daughter, Terri, if she's available".
After the nurse left I reviewed a new process we are trying. Dad needs to be increasing his water consumption. He drinks coffee but fails to remember that coffee actually dehydrated the body and that it doesn't count as water even though it has water in it. So I made a two-column list. One says coffee the other says water. I have a smiley face stamper next to the list. Every time he has a cup of either, to put a smiley stamp in the correct column. This way I can track his drinking. As I have been trying for a few months now to get him to drink more water, I decided on a slight scare tactic. First don't panic...because I think it worked. I told dad that if he doesn't drink between 4 and six large cups of water a day that he may get to a point that he needs to be hospitalized and possibly a nursing facility until he can get hydrated. That seemed to do the trick.
The goal of the team is to keep dad in his home and sometimes we need to remind him that is why we take these steps to get him to make positive steps for his own health.
Now another issue arose today. This one caught me off guard and I told the nurse about it today. Everyday I monitor his towels, soaps, the shower and dirty towels to make sure he is showering. All signs showed that he is accept lately his skin has been excessively dry and body odor has started to be an issue in the last week or so. Dad said today that he wipes down with a wet cloth daily but has not showered for over a month. He said he just didn't want to. We talked about if the shower makes him nervous or if there is anything about it that he doesn't like. He said no. Tomorrow I will talk with him about it and see if I can get him to agree to shower twice a week if I am in the other room in case he needs help. We will also have the talk about now he feels if he needs help in the shower and how he feels about me doing that for him. Sometimes that brings a new level of trust and bonding between patient and caregiver. When they are father and son it can either be devastating to the patient or rewarding. We will soon find out which one applies to us.
Good news came today that the administration of community care will approve compensation for me for caring for dad. Caring for dad takes about 25-30 hours a week. I will get compensated now. Basically either we would have someone come in and do what I'm doing but only three times a week...or they pay me an hourly wage for doing it. It's a good deal! It will relieve a lot of financial burden.
What's next? We will keep looking at assisted living facilities and hopefully find one that is well suited for dad and that he likes. Then we will fill out the application and go from there.
Dad is happy and healthy. He loves cards and recently received two from people he worked with in Florida at the forest service. He walked downstairs and showed a group of ladies playing puzzles. Want to make a guys day? Send him a card...a funny one...he loves them!
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